Cancer Survivors Network

I am praying this does it for you, never heard of it before your last post, but thank God for the scientists out there, hope this is exactly what you need...keep us posted on your progression...
Jim

Dear RRMCJIM,

Thank you for your kind thoughts and prayers. Today marks my two year anniversary of being informed of this dreaded disease so Happy 4th of July! I was given the two year bit with "get your affairs in order" dialog so I do have something to celebrate.

Best wishes,
Glen

Wow! I am a 55 year old, and 2 months since surgery. I hope and pray the best for you. I sometimes think anything is better than the alternative or is it? Best of luck to you with good thoughts and prayers your way.

Jim (shubbysr)

Jim,

Thank you for your post and your prayers. FYI...my initial Urologist, Oncologist and Surgeon suggested RP, (Divinci) along with Radiation and Hormone therapy but after further investigation posting my gleason, PSA, and staging into some computer models to determine RP outcome,I felt hormone therapy was the best for me considering quality of life.

Initially I was diagnosed as a stage 2 but after seeking a second opinion learned my disease was a stage 4 with distant lymph node involvement and extensive peritoneal invasion based on a prostascint scan. Radiation Oncologist stated to save radiation for when I needed it, bone pain, and a new Urologist suggested I be on Taxotere. I also visited the Datolli Cancer Center in Sarasota FL for seeding but my scan showed my cancer wasn't contained.

Hopefully yours was contained and surgery got it all.

Wishing you good thoughts, good health and many prayers your way.
Glen (Medcomglen)

"I received two 120 mg. injections of Firmagon today..." not 125 mg.

Hate to be picky,but your follow-up will probably be 80 mg., not 85. It's going to hurt anyway for a bit :-)

Jack

Happy Birthday America! The injection site pain subsided with only minor discomfort today. So far I am tolerating this therapy really well with no hot flushes, fatigue or back pain as I did under Lupron. Still having insomnia but hopefully this will pass.

Well Glen, this sounds like it agrees with you, not any side effects to speak of so far.... I know of a few who have suffered side effects from Lupron injections, hope this continues to be the answer, and that sleep catches up to you...lol...
Jim

Hi Jim,

Hope you are well and thanks for your post. Caught some Z's finally with a little help from the medicine cabinet last night. I noticed my prose seems a little sharper now. I read some previous posts and emails and I think I wasn't all there after my injections.

Feeling "so so" today but still better when compared to the other testosterone reducing drugs. Lupron made me an instant couch potato. I think I should invoice Ferring Pharma (maker of Firmagon)for all the free publicity here. LOL

Best wishes,
Glen

Great news! My PSA results came back today...0.8 down from 4.7 one month earlier with initial dose of 240 mg of Firmagon. Received the first follow up Firmagon injection of 80 mg. yesterday but I am planning intermittent therapy for the future if PSA remains low. I experienced injection site pain, redness and swelling but overall side effects are still better when compared to my past experience with Lupron.

Congrats on your Number!

Appreciate your support and a big "Thank you!"
Best wishes...

My Oncologist prescribed Darvocet and a steroid pak to lessen the pain with swelling. Doing well three days later. Experiencing typical hormonal therapy side effects, minor hot flashes and loss of libido but that's all for now folks. At least my PSA dropped significantly down to 0.8 from 4.7.

what were your experiences with lupron?

Hi Carl,

Sorry to hear about your painful experience but in a strange way it's soothing to know another member is taking Firmagon on these boards. I hope to compare notes in the future if you concur.

My initial two injections last month resulted in severe muscle pain and abdominal swelling that subsided over three days. My injection last week was indeed worse resulting not only with muscle pain but also a raised itchy red patch at the injection site. My Oncologist prescribed MethylPREDNISolone and Darvocet.

For what it's worth... I read that the secondary 85 mg. single injections are stronger by volume compared to the two initial 120mg's. This may be the culprit from the follow up injection site pain you experienced. Let me know if you switched from Lupron or Eligard and if you notice any different side effects.

Thanks in advance and best wishes,
Glen

Hi Glen,

It looks like we are experiencing just about the same results from our first and second set of injections. I had my second treatment on August 06. The next day, Aug. 07, the pain started getting stronger. By 8pm the pain became terrible enough that my son Jon took me to the ER at the hospital. They did a lot of tests before giving me an injection to stop the pain. I went home about midnight feeling better. About three days later the pain seemed to have pretty much gone away.
In response to your question, I have not taken any of the Lupron or Eligard. This is my first trial of anything for my cancer which has been spreading around in my body. I have gone through four Bone Scans and one MRI which showed where the cancer has spread. Thanks for your information. I value it highly, and look forward for more. Best wishes to you. Carl

Hey Carl,

Thanks for your update and I'm sorry you had to go through all that. I seriously think Ferring should emphasize the potential injection site pain scenario more then they do to Medical Professionals but with that said...clinical studies showed only 2% experienced any severe pain apparently. We both fall within that group for sure. I wonder how many others out there have experienced this severe injection site pain?

After I received a press release on Firmagon back in March where I use to work I phoned several major Cancer Centers and not one had even heard of this drug so we should consider ourselves true pioneers.

I look forward to your PSA results if you care to share. I'm getting tested next week so look for my new PSA result post.

Till then, wishing you good health and keep the faith.

Glen

Hello Glen,

Sorry that I'm so late with this. When I went for my Double Injection, a Blood Test was
performed, and the results for PSA were that their test only went as high as 50.0. The Blood Test that was performed just before my second injection came up with PSA of 5.0 Great!
My next injection will be on September 06, and I will get another PSA Reading, and will contact you with the results.
All good wishes for the best to you. Carl

Hey Carl,

Congratulations! That's an incredible response from Firmagon since you went off the PSA charts. I bet after September your PSA will be 0.1 :-) I'm scheduled for another injection this Friday and then I'll take a break so I can beat my chest again. I'll look forward to reading about your next low, low PSA result.

Wishing you good health.

Glen

Hi, Carl,

Four bone scans? I don't think I could endure that, judging by my one experience with it. I found it to be most uncomfortable being confined motionless to the narrow hard bed for I think what was a least half an hour. I had one about a year ago and it came up clean, but my urologist wanted me to have it done again, but I had to refuse. I'll have to mention to the doctor that I would do it again if I could be given a sedative. But the discomfort was nothing like a cystoscopy or a biopsy through the anus. The biopsy resulted in blood in the urine. When I first got blood I was standing up and the blood gushed all over the toilet and beyond. So after that I had to sit down. I collected a sample to show my doctor and he declared it to be "gross hematuria" It would show up sporadically and eventually after about a month it cleared up. My oncologist thought it was blood from the cancer, but since it has stopped I'm of the opinion that it's just from the biopsy, although I'm not denying that I have a Gleason score of 8.

Jack

Hi Carl,

I had about equal amounts of pain on my first (double dose) and second injections. Third I hardly felt. Had my fourth 8/14- some moderate pain for the next day, I can't really feel it today.

How long does your pain last?

But it is definitely doing the trick!

Good luck!

Hi Bill, Thank you for the information. My pain was different. I had pain the day after my first (double dose) however I was able to live with it, however, on my second injection, the
next day pain (in my stomach) was bad enough that after a whole day with no let up, I wound up in the ER for relief. I'm keeping my fingers crossed for the third injection which is coming up on the 6th of September. I wish you all the best, and hope to keep in touch with you. Carl

Hi, Carl,

It's interesting that I had exactly the same experience. For one week after my first follow-up I felt like I had been shot, besides which the injection was on my belt line. A couple of Ibuprofen takes the edge off. However,I had no flush and little muscle ache. Except for having to get up at night 3 0r 4 times, I feel well. An afternoon nap helps a lot. I see guys talk about getting their numbers down to .5. Starting from 800, I wonder if I'll ever see numbers like that. I had hoped to deal with my situation with intravenous vitamin C. It worked for a while, but then my veins collapsed and the procedure was too painful. So now I take a lot of vitamin C orally.

Jack

Hello ID34,

Thanks for your question and the reminder. I too have to remind myself that I (we) are not alone. :-)

When I was first diagnosed two years ago I was given Casodex 3x/day but stopped when I was informed I was a candidate for surgery. Long story but I opted not to have surgery due to the extent of my disease but continued on Casodex 3x along with several other meds for six months. Quality of life suffered and I was probably going to loose my job so I stopped and continued on just an intermittent Lupron hormone therapy. I did take Casodex once again to overcome tumor flare when injected with Lupron, 10 days prior and one week into therapy. I read that Casodex would stop any tumor flare and lessen pain during the flare up. Currently no Rx for Casodex.

Degarelix is designed to target and block the GnRH receptor. This rapidly prevents the production of testosterone and avoids the risk of flare. So far so good except the injection site pain.

Wishing you good health.

Glen

How did, in your case, intermittent lupron work?

One lupron shot and then off or a years worth of lupron and then off?

At what level psa did you resume the lupron shots?

Lots of questions ,I know, but I do appreciate, very much, your answers. I will process them and with full understandng that all situations are different and need to be handled in an individual way.

Isn't it ironic,that this thing(testosterone) that we are trying to stop now,was a chest beating prize when we were 20?

Hi Id34,

Here's my PSA and injection history...6/07 PSA 14.7; 8/07 First injection of Lupron (Trelstar Depot); 10/07 PSA 0.3; 12/07 PSA 0.1; 3/08 PSA 2.1; 3/08 Second Lupron (Eliguard)injection; 6/08 PSA 0.2; 7/08 PSA 0.2; 9/08 PSA 1.2; 11/08 PSA 3.8; 12/08 Lupron (Trelstar) injection; 3/09 PSA 0.4; 5/09 PSA 2.7; 6/09 PSA 4.7; 6/09 First Firmagon injection,240mg.; 7/09 PSA 0.8; 7//09 Second Firmagon injection,80mg.

I hope this gives you an understanding of my intermittent hormone therapy and I plan on beating my chest again soon :-)

Best wishes,
Glen

Hi Medcomglen,

I am receiving Degarelix-

Fourth injection yesterday. I get them once a month. My PSA was at 89 when I started. Three weeks after my first injection it was at 29. It was down to 2.2 last month. I'll find out this Friday where it is now. I'm thinking a lot lower.

I also had 42 IMRT treatments.

Good luck!

Hi Bill,

That IS GREAT NEWS! A very promising drop in PSA and you are way ahead of Carl and I on Firmagon injections. Did you have any severe injection site pain? If so, do they lessen after each injection or get worse?

Wishing you the best on your next PSA reading.

Glen

Medcomglen,

Thanks!

Found out yesterday that my PSA is at 0.6. Doctor is EXTREMELY happy. I'll be on the stuff for a couple of years. Doctor was involved with Degarelix studies at UCLA- stressed the importance of being on the stuff for a couple of years. He's pretty positive everything will be fine. He also mentioned that Pomegranate juice might be helpful. He was involved with trials (nothing conclusive, yet) that showed promsie for Pomegranate juice reducing PSA.

I do get the 'moderate' pain from the injections: that night and the next day. First time it seemed ot ahve lasted a lot longer. I can;t even feel it today, and it's been eight days since the injection. My belt will press against it occsionally and I don't sleep on my stomach.

I actually think the doctor smiled yesterday!

God, I like good news!

You might find this link of interest:

http://www.renalandurologynews.com/Pomegranate-Juice-May-Help-Prostate-Cancer-Patients/article/146790/

Excellent article. I'm buying up all the pomegranates in the Southland! LOL.

My urologist mentioned he was involved in these (apparently) same Stage 2 trials.

Bill

Thank you for the interesting link on the pomegranate effect reducing PSA. Great stuff! I wonder if the pill form supplements have the same effect?

I started on the pomegranate juice. Read another article that said the pill supplements will provide the same effect so I switched since they are alot cheaper. Also I could only find one grocery store that sold 100% Pure pomegranate juice. Many of them are mixes with other juices.

I also take Green barley capsules, Vitamin D, Acai supplements, Flax seed oil and another combo vitamin called malegard. My first post surgery PSA will be in Middle October.

If all these suplements aren't helping I'm at least doing my part to stimulate the economy!

Larry

Hey Larry,

Thank you for your suggestions regarding Pomegranite juice and the alternative supplements. After reading the fine print on some of the Pom juice I was drinking it only contained about 20% extract.

I recently ordered Pomegranite supplements along with Resveratrol. I've been taking vitamin D3, Vitamin D, B-12 and was taking calcium supplements for bone strength but stopped taking these after reading calcium can actually increase PSA. I guess I will continue to stimulate our economy but save a little pocket change taking only supplements now. You have my prayers for your zero PSA reading in October.

Best wishes,
Glen

Hi Larry,

"If all these supplements aren't helping I'm at least doing my part to stimulate the economy!"

My sentiments exactly. I'm probably one of Vitamin Shoppe's best customers, (online) but I'm saving a few pennies by using Black Cherry concentrate rather than pomegranate. You could get pomegranate concentrate from them. I like their policy of no shipping for a $99 purchase.

Good work!

We're tied at 0.6- maybe we can race to 0? LOL.

Hey Bill,

My Testosterone is 45, down from 336 in June. What's yours?

Best,
Glen

Hi Bill,

That's incredible news! I bet your Doctor was all smiles. I wasn't going to receive another injection of Firmagon until my PSA rose but... we GOT GAME now. LOL Keep up the great news.

Best,
Glen

Received third injection August 26th. Experienced injection site pain with red rash again but not as severe as previous injections.

Hi Glen, had my third this morning. Also got a reading on my PSA. It went down from 5.0 to 1.5. Sounds good to me. I have been reading all comments from you ,Bill and Larry (Lewvino). A great bunch. My best wishes to all. I am tracking right along with yours and things sound very good. Until the next time. Carl

Way to go Carl! That is some decrease compared to three months ago. It's great we can compare notes on our progress here. We should name our little Group "The Firmagons" eh?

Best,
Glen

Good work, Carl!

I've been hitting the pomegranate juice and visualizing my PSA dropping.

Only bad news lately is that the urologist figures I'll be on Degarelix for a total of three years.

I'm not real excited about the side effects of my testosterone dropping.

But, oh, well- my wife commented that I'm a lot easier to get along with.

Take care!

Bill

I've read the visualiation of the cancer dying is a good therapy! So keep it up!

Larry

Hi Glen,

I didn't ask the doc about testosterone level. I'll ask this Friday when I go in.

I got another Degarelix injection yesterday. I hurt a little this morning. Nothing horrible. And I feel a little 'weird': tired mainly. A bit of a stiff neck. But it is

Saturday, and I'm normally getting over a week's work. So it's hard to separate normal tiredness from Degarelix effects.

I asked the nurse who gives me the injections if she gets any complaints along the lines of what I've been reading here. She said no: no infections, no extreme pain, etc.

The pain from my radiation treatments (IMRT) have disappeared. Urinating no longer hurts.

I see the radiologist this Wednesday. Looking forward to his prognosis.

I forget I even have cancer sometimes! LOL. Friends will ask me how I'm doing and I'll think 'oh, yeah... I got PC!'

Hope all goes well!

Bill

Hi Glen, Just a little report on my 3rd injection. I kept waiting for the pain to appear, however, by the fourth day there had been NO PAIN of any kind experienced. What a great thing. I hope that you are also experiencing the same. I have had quite a bit of a little dizziness and weakness but I still take our dogs up the mountain that we live on for a good walk every morning. I read Bills article regarding Pomegranet Juice and am now taking it every day.
A note, We shop at a Ralphs market and the juice costs $8.99 per bottle, However, We went to
Trader Joe Market and bought the same thing exactly for $4.95 per bottle. We live on Lookout Mountain in the Los Angeles, CA area. Where do you live? I hope that there are Trader Joe Markets available to you. I will get my 4th injection on the 6th of October. My best wishes to you, and Bill and Larry. I am now going to sit down and read everything from you, Bill and Larry all over again. I don't want to miss any of the correspondence. It is great to read all the information.
Thats all I can say until the 4th injection is completed.

My best wishes to you. CARL

Carl,
Make sure and read the label on the pomegranet juice. I live in Tennesee and some of the brand's that cost less are not 100% Pure. They have other juices added. I've switched to getting capsules of pomegranet at the health food store instead. Its not near as expensive.
I'm also taking Vitamin D, Acai Berry extract, Green Barley capsules and another capsule called Male Guard which has numerous things in it. I won't know if they are working for some time. Today is 32 days post surgery and I do not get my first psa until Oct. 17th. I'm concerned since I had a positive surgical margin and a gleason 7.

If you get a chance head out to Loma Linda California (near Redlands) and about 15-30 miles past Ontario airport. They have a large Prostate Cancer support group out there at the medical center. They specialize in Proton Therapy but I understand they promote a very healthy diet for follow up. They might be able to give you some pointers on supplements and foods if you find out when they meet. My dad was treated for his prostate cancer at Loma Linda back in 1996.

Hi Carl,

I found humor in your comment “waiting for the pain to appear.” The laughter brought back my injection site pain. Thanks! Seriously, you just give me hope regarding my next injection. I still have a raised patch from last injection and I too experienced dizziness for brief moments after last injection.

Wish we had Trader Joe’s in Sarasota Florida because the cheapest Pom Juice I found is about $9.86 in Wal-Mart so I recently ordered capsules from Swanson’s thanks to Larry’s advise. Yes, it’s great we can exchange our experiences here and I look forward to the positive feedback and advise. Feels like Family for sure.

I’ll have another PSA test next week and based on results will decide on intermittent therapy. Been doing this on and off for over two years now. My stomach is telling me to go back to the three month Lupron injection in the ass but I experienced terrible exhaustion and mood swings compared to Firmagon. My abbs are looking forward to the Firmagon clinical trial results that Ferring has under way. They want to see if one shot will keep PSA down for three months or more.

Wishing you great health!
Glen

Hi Carl,

Glad to hear about the reduced injection site pain.

I've been grabbing pom juice at whatever store I've been at- but I think it's time to make a Trader Joe's run. Love that store. Thanks for the reminder.

I've also got a couple of juicers, but I haven't priced fresh pomegranates- I imagine some sticker shock.

I'm out in the Riverside area. Beautiful weather! No problem with the recent fires.

Take care,

Bill

Hi Bill,

You have the right attitude which as you probably know does more to cure us then any meds will. My ex worked on an Oncology floor for 25 years and always said that's the key to those that survived.

It's promising to read other patients experienced no injection site pain from Firmagon. Carl and I experienced some dizziness and I had an occasional stiff neck but thought I slept on too many pillows. It's incredible how well you are doing compared to some blog entries not to mention you are still working. Too bad we couldn't bottle this.

Wishing you all the best... until next time,
Glen

Hi Glen,

Thanks for the positive comments!

My PSA crept down to 0.5.

No urologist for three months, no oncologist for six!

Other than the lack of testosterone, I feel REALLY good. A bit of injection site pain, but no dizziness. Euphoria sometimes... maybe a hot flash (not sure). My wife doesn't mind the lack of testosterone that much- she says I'm a lot calmer; and I wonder if my testosterone levels were too high and contributed to the PC?

It's great to be working and back to complaining about getting out of bed and commuting and too much work to do and too many boring meetings.

Laughter works wonders, too, I think.

One of my brothers decided to hassle me about the rigors of my biopsy (last April), so that I started laughing during the procedure. The nurse was wondering why I was laughing. I told her about my brother's take on all this, and she thought it was kind of mean.

I got a couple of other friends who actually got me laughing when things looked pretty grim.

Take care, looking forward to your next posting! (And you WINNING your battles!)

Bill

Hi Bill, Great news! We are both tied at 0.5. I received my results Friday. I'm going to take a break from Firmagon for possibly three to six months if I can. Are you doing intermittent therapy too? Sounds like you have a great support system. (your wife:-)

When I was first diagnosed my testosterone was pretty high too so your assumption is probably right. Testosterone feeds those nasty little cells.

Your "rigors of biopsy" brought back a memory... I received a Sonogram up the old a-hole from a "seed" Doctor in the beginning of this exciting PC trip to see if I could be a candidate for Brachytherapy. I wasn't a candidate, "too far gone" they said, so after the procedure I turned to the technician and blurted out... "Leavenworth wasn't all that bad compared to that wand thing you just used on me." The male Tech remarked in a French accent, "Really!" "You were in famous American Prison?" Till next time and Thank you for making me laugh, hope I returned the favor.

Glen

Hi Glen & Bill....I got the Davinci in May...it didn't work apparently as my psa since has been .3 in june to .7 a few days ago. My urologist suggested hormone therapy & radiation. My pet scan did not show conclusive evidence of cancer & bone scan was negative. Because of the scans I am hesitant to let them blast away with radiation. Since you both are doing hormones and appear to be doing well, can you tell me of the side effects? Sex life, mood,fragile bones, tiredness, weight gain......do any of these apply? Do you take injections forever to knock psa down? Your info is appreciated & hope you both continue to do well.
Regards,
George
central Fl.

Hi George, my friend Glen asked me to post a response regarding your situation. Two years ago I had the DaVinci procedure with favorable margins reported on the pathology. 9 months ago my PSA measured at .30. My urologist recommended radiation. I had 38 radiation treatments of the prostate bed. my psa is now measuring at <.01. They really pinpoint the radiation. they actually inserted a few gold markers in the prostate bed so they could direct the radiation just in that area. the only side effect i had was that i was a bit tired the last 3 weeks or so of treatment.

I still have sex, no problem with continence. If you would like to contact me you can send an email to segersales@aol.com and I can give you my phone number as well.

Did your cancer cells show up on any scans?

Hi, no nothing showed up on my scans. i dont check this very often, so if you have questions, email me at segersales@aol.com

Hi George,

I'm currently on Degarelix. It knocks the hell out of testosterone. I feel pretty good (just a little weird the day after the injection, and I have a sensitive injection site).

The only real draw back is that I don't think about girls as much as I used to. But that's kind of a plus since I get a lot more of other things done.

I'm not sure going from .3 to .7 is any real cause for worry, but I'm not the doctor. PSA (as I understand) can also be affected by any type of stress in that region- bike riding, etc.) Mine is presently at 0.5 (tied with Glen! and my dad who had proton beam- nothing else- 13 years ago).

Radiation was pretty easy. Some diarrhea, hair loss in the region, pain in the urethra.

All gone now. Other than the sex drive, everything else is the same. I'm working full time (business trip the other day). My mood is actually improved. Apparently my testosterone was high before I went on the treatments. Not sure. I'll ask next time.

I'm thinking that excessive testosterone can make you moody, edgy.

Also try pomegranate juice. There is stuff posted around here somewhere on it and how it apparently lowers PSA. My urologist recommended it.

Take care and visualize the positive outcome to all this!

Sounds like you haven't lost your sense of humor. I see the radiation doctor next week. I know he is going to want to start shooting. But he has to convince me he knows what he is shooting at. All my scans were inconclusive. Also, not sure if they do find the perpetrators if I want proton beam or Imrt radiation therapy. If I need hormone therapy, since I'm a singer, I worry my voice will go up a octave. And as a tennis player...will I lose my competitive nature? I already lost most of my "up time" for sex with surgery, so the loss of "drive" may not be any big deal! Here I am blab, blabin away......but you guys know where I'm at. Good luck....and lets keep drinking that pomegranate juice.
George

hi bill, before i received radiation, they inserted a few gold markers in my prostate bed...too many jokes here, I know. So the idea is that they were able to really target the prostate bed to kill rogue cancer cells...so far my psa has been measured at <0.01

Hi George,

Sorry to hear you have a PSA after RP but I read that you should be concerned if your PSA rises past 15ngl. and then some look for a doubling time. Someone wrote..." ask five Urologists and five Oncologists the same question and you will receive ten different answers." I see my friend Denis replied to your post and did fine with radiation when his PSA rose. The hormone therapy side effects are different for everyone but I've experienced exhaustion, loss libido, hot flashes, weight gain, moobs, personality changes etc. This is one reason why I chose intermittent therapy so I can give my body a break. The side effects seemed worse with Casodex and Lupron when I started two years ago compared to Firmagon but there are trade offs. Firmagon is what drove me to these boards in the first place. Check out some of the older posts for more info on hormone injections and my intermittent therapy/PSA roller coaster. Great car by the way but I want to know where Bonnie is?

TTYL and keep the faith.
Glen

I've been doing this for the last 18 years.
e-mail me at olddukey@gmail.com call at 561 441 9796.
John 34 ford 2 dr high boy 302 with 671 blower just for fun.
I'm SE FL

Glen,
too funny!

Talked to my dad Tuesday night. He hasn't gotten any hormone treatments, but he had proton beam back in '96. His PSA hovers around 0.5 since. He was bragging to his senior citizen buddies about how high my PSA was originally. My brother commented it was the same as my IQ.

I'm getting injections every month for at least a year. Doctors are watching and waiting.

Could be a lot worse: poor guy at work just got the news about having colon cancer. He's only 38!

Bill

Hey Bill,

I've even "bragged" about your PSA score in a Prostate support group so you are becoming rather famous. Based on your IQ I'll take over the book and movie rights. OK? LOL
Your Dad's success is a good sign for you.

So true, alway's someone out there worse off but it seems that cancer is hitting younger and younger folks these days.

Best to you.
Glen

Glen,
too funny!

Talked to my dad Tuesday night. He hasn't gotten any hormone treatments, but he had proton beam back in '96. His PSA hovers around 0.5 since. He was bragging to his senior citizen buddies about how high my PSA was originally. My brother commented it was the same as my IQ.

I'm getting injections every month for at least a year. Doctors are watching and waiting.

Could be a lot worse: poor guy at work just got the news about having colon cancer. He's only 38!

Bill

Carl,

Great news on your PSA score and thank you for your kind words. At your age you are definitely an inspiration to all of us fighting PC. No need to apologize for not communicating on these boards. I should have replied sooner but I attended my 40th High school reunion last week. I can brag that even with my disease I still looked ten years younger compared to most of my old H.S. buddies. LOL. Great news on your PSA score. You won! I was due for another Firmagon injection but decided to beat my chest for a few months . I can tell my libido is coming back so it will be interesting to see my next PSA results next month. Have you tried drinking Soy milk to lessen hot flashes? It seems to work for me when I remember to drink it. Stay in touch and best wishes for recovery.

Glen

Glen & Carl etal
Please let us know where you found out about Fimagon. Did your Doc suggest it or did you have to request it's use??? Lupron no longer works for me so looking for the next step toward more aggressive treatment. Thanks
Bob

I read your comments concerning Lupron failure. Would you be kind enough to provide prior details. How did you get to the Lupron phase? Surgery? How long the Lupron work for you etc.
I thank you in advance.

Bracheytheropy in1998 after biopsy PSA 19.7 3+2=5 and PSA went to <0.1 lasted for about 14 month then elevated so started the Lupron in 2000, one shot per monthe (7.5) brought the PSA back to the <0.1 for about 7 years, then re occurrence stopped Lupron and found a
supplement (pills) from Mexico called PROSTAL (may not be available now) brougnt PSA back to<0.1 for nearly two years the re occurrence this year started Lupron again in July but PSA not responding
Bob

Thanks for the very quick response

Your comments on the following will be most appreciated

Side effects of Lupron?
Lupron every month vs every four months?
Relationship of gleason and Lupron failure?

Thanks

ld34
I have very little side effects from Lupron except hot flashes and after so long a time thought I needed a training bra. No experience on any other dose other than the trial of one for 3 months (which did not work) so elected to keep the one per month. My doctor said we needed to do SOMETHING when PSA hit 10 so will discuss whatever he recommends for next step but in looking at all the sides on Fimagon the nost scary one to me is the 5.2 "Effect on QT/QTc Interval" cannot tell whether Fimagon is worse than Lupron or not or whether both would cause a problem after prolong usage. Good luck with your decision.
Bob

Great to find this group, thinking about Firmagon. I asked my doctor about the QT interval and he said it was related to dropping my testosterone and would be a potential issue regardless of the drug. Weighing my options and staying positive.

ld34
Your doctor will tell you that at SOME point the Big "C" will overcome the Lupron treatments, we are all a little different so cannot say when.
Bob

One more thing, Bob.... Did you start your Lupron at a psa of 7.5?

Hi Bob,

I posted a reply earlier today but for some reason the post never showed up here. Anyway, I found out about Firmagon from a Ferring Pharma Press Release I received while working for a Medical dot com.

Has your Oncologist suggested Casodex and or Taxotere since hormone therapy no longer has an effect? Taxotere does not increase life expectancy very long according to some studies but we are all snowflakes so this may reduce your PSA long enough until a new cure is discovered. Keep us abreast as to what your Doctor recommends since we will all be following in your footsteps at some point in time.

Best wishes,
Glen

Hello Bob,
My urologist called me and said come and see me, I have found something new that looks like it could be just what we need to help you. We met and he said that because of the serious condition that i am in we should start the treatment immediatly, and we did.
If you read what each of us Firmagonians have written, you will see the results from each one of us. I live in Hollywood, CA. Where do you live?

I wish you all the best. Carl

Hey guys many thanks for the input. Presently on Casodex (since July) and yes I have been reading the fantastic results that seem to be too good to be true for each of you. My appointment is Nov 4th and will post a notice of results (may have to wait for couple of days for) Lab results. Live in DFW area.
Bob

Hi Guys
Update on last lab report, call it a little Christmas present, PSA down from 11.5 to 6.5 with Lupron shots. Don't know why it kicked in now but will take anything I can get to reduce it. Happy holidays to all.
Bob

Hi Glen,
I just realized that I gave the wrong information in my October 10 communication.
I had my 4th injection, NOT MY 5th injection.
My 5th injection will be on November 3rd. I will let you know what my latest PSA reading is maybe on November 4th. Sorry about this. I am feeling pretty darn good most of the time. Once in a while a bad day but there are more good than bad. My best to you along with all the good wishes for you. Carl

Hi Carl,

Hoo Rah! PSA results remained the same at 0.5. My last injection of Firmagon was August 26th. My plan is to stay off Firmagon until my PSA rises to 2.0. Wishing you a painless fifth injection.

Best,

Glen

Hello Glen,
Here I am late to respond again. I had my 5th injection on November 3rd.
My PSA reading went up a little from 0.4 to 0.6 but was told not to worry
about that. I will be going in for my 6th injection and a PSA reading on
December 4th, 2009. I am having a lot of stomach problems lately, but, I
also have some very good days. On Saturday, November 21st I was feeling
great and put a new tire, and a new spark plug in our 1964 Rambler Wagon.
The next day I felt terrible and did nothing. Today the 23rd of November
I felt good again and washed off about 6 months of dirt from the Rambler.
She runs well, and looks great. Enough for now.
My best to you and all the others there.

See Ya, Carl

After my last shot of Firmagon on 8/26 my PSA remained the same at 0.5 two months in a row for October & November. December 9th PSA results were even better at 0.46. This never happened before after taking a break from hormone therapy on Lupron. Happy Holidays everyone!

Carl
I have one more question, did you at one time have Lupron shots? thanks
Bob

Hi jpmpage.........I'm not Bill or Glen but I'm 65, a Davinci failure, and looking at radiation & possible hormone therapy so I can live to the age of 88. I applaud you for doing what it takes to live 88years. You are my role model. Keep us posted on your progress. Lets raise a p-juice glass...........
George

George,
I'm 18 years into itermitent therapy.
I works, all my parts work most of the time and there are NEW treatment options all the time.
John
dukey@mail.usa.com

Hi Guys,

I'm glad I happened upon this forum. It has given me a good idea of what to look forward to since I'm getting my first shot of Firmagon tomorrow. I haven't had any other conventional treatment since my PSA started going up a few years ago. Now, at age 77, I have a Gleason score of 8 and a PSA of 800. You read that right, 800. The cancer has not metastasized, but it has given me an annoying case of incontinence. I'll keep you up to date. I have to mention: The biopsy was very painful. I've also had a cystoscopy and it was the most painful 2 minutes I have ever experienced.

Hi guys,

I've had my first (double) shot of Degarelix. For the first day I was somewhat achy all over, so I took ibuprofen and I was much more comfortable. However, the injection sites were annoying, especially the itchiness. I also had one brief, mild experience with hot flushing. There's been no change in vitality or ability to sleep. So far, so good. It's too soon to tell, and it just may be a coincidence, but I've been making one less trip to the john at night.

Welcome Jogger,

I too experienced itchness, swelling, rash at injection site. One of the other "Firmagoners" posted he ended up in the ER after an injection.

Hopefully Ferring will develop a 3 month or longer injection program soon. Monthly abdominal injections can become a bother. Compared to the way I reacted to Lupron therapy I'll put up with the side effects of Firmagon. My last injection was in August and my past two PSA results remained the same at 0.5. This was the first time in two years this ever happened. I'll learn my newest PSA result tomorrow. In the meantime I wish you best of health.

Glen

Hi Glen,

I have absolutely no medical knowledge, but it seems interesting that one could get a PSA down to .5 after a diagnosis of lymph node involvement and grade 4. Way to go!. With a Gleason score of 8 and a baseline PSA of 800, I should be so lucky. Happy New Year!

Jack

Hi Jack,

I was surprised as well as to my low PSA results especially for the length of time from my last Firmagon injection in August. "Knock on wood" Hopefully you will experience the same results.

Best wishes,
Glen

Hi Glen (and others)

Yesterday I had an ultrasound of my prostate, which is a month after my third shot. Doctor is 'very pleased' with the amount of shrinkage. I had my fourth shot yesterday and it still hurts a lot at the injection site. However, I have no body aches or flushing such as I have experienced before. The nurse took blood to get my PSA and testosterone levels. I put off dealing with my prostate conventionally for years, counting on infusions of Vitamin C, which I had to stop because my veins gave out. It's just as well because my PSA was off the chart. I hope I did the right thing in that I may have avoided the possibility of surgery, chemo or radiation and their side effects. The Degarelix has not affected my libido because it was down to zero even before I had my first shot. :-) After my biopsy months back I had bloody urine for a while. Now every time I see the doctor the first thing he wants to know is do I have any more bleeding. I think he believes the bleeding was from the cancer. I like to think it was just the biopsy. Oh, well, time will tell.

Jack (the ex jogger, thanks to the recent development of angina.) Bummer I had done the NYC marathon when I was 50, 60 and 70 and I was hoping to do it at 80. Just as well. The entrance fee is too high these days. (sour grapes)

Jogger,
You chose the perfect login name for yourself. You should finish the marathon again at age 80. I'll pay your entrance fee but... I'll be the first to get your autograph and I want 30% from your Late Night talking engagements and book publishing rights.

I had bleeding too after my Biopsy and I remember reading a pamphlet stating that would be possible for a few days after biopsy. Blood also appears in semen. (What is that?) In fact I don't know anyone I've spoken to that didn't have blood in their urine after a biopsy for about 3-5 days. I hope it wasn't from your cancer cells.

There is a video on youtube on Firmagon and Doctor Chodak said 35% of patients in the clinical trials experienced injection site pain. I'm almost thinking of switching to Lupron so I don't have to endure the Mack Truck to the stomach feeling again. My last injection was this past August and my PSA has been down to 0.5. or below. I get checked again this Friday so wish me luck. If my PSA has risen beyond 2. I'll have to get another injection. Best wishes, Glen

Hi, Glen,

I've had my sixth shot, or is it seven? Any way my, PSA is now 2.6, down from 800. I guess the gain is worth the pain at the injection site, including the 'rock' and the inflammation, both of which last a week. Ibuprofin does help. I hope I can get some time off from the shots. I see your PSA held from August to January. What's your score now?

Off the topic, (try and stop me), but I'm taking blood thinners as a result of my bypass. They are a pain because you gotta keep going for a test (every two weeks right now) to see that the viscosity of the blood stays within a certain range. I bruise very easily. BTW, one of the medications I was prescribed is Lasix. When I started to lose my hearing I looked up all of medications and saw that the Lasix has the potential to cause deafness, so, without doctor's orders, I took myself off of it and within days my hearing was back to normal and I didn't see a rise in edema, which is what the Lasix is supposed to stop. And now, as to my potbelly, I can't get a decent aerobic workout going because of low back pain. I do what I can laying (lying?) down and pumping my arms and legs. I had one slice of bread for two weeks and lost a lousy one pound.

Jack

Glen,
please email the results to me.
I file all info for future use.
I went off Zoladex in April and had a 1.1 then, 3.4 May, 4.0 July and 4.6 in November.
I still take a proscar every day. Have for the last 15 years. They say it halves the PSA
but I think it's anti cancer qualities are always there working for us.
john
olddukey@gmail.com

Hi Olddukey,

Sorry to see your PSA rose and hopefully will dropdown again.

My last reading 12/14/09 came back at 0.4.6. Down from 0.5,October and 0.5, November. Last Firmagon injection received August 26th. Testosterone reading was down to (7) on 12/14/09.

Trying to keep warm here in the Sunshine State.

Talk again soon.
Glen

Hi Glen, on the 4th of January, my PSA was 0.9. I was given a hormonal injection and told that next month I will be put on a three month period for these injections. For the last month I have been feeling GREAT, in fact, I have been working very hard to remove a very large tree that a recent wind storm blew down. It landed against our house. The tree was my pet, it was a Crab Apple tree, and I love Crab Apple Pie especially the way my wife makes it. I planted that tree back in 1949. I wish you and all of our CSN group of Firmagonians a GREAT, and healthy NEW YEAR.
jpmpage (Carl)

Hi Carl,

Thank you for the New Year wishes and glad to hear your PSA is under control. I assume you are taking one of the following: Lupron, Zoladex, Viadur, Trelstar or Eligard since you mentioned three month injections. As long as it works and agrees with you is the bottom line. Sorry to hear about your 60 year old crab apple tree. We had an old one growing up and the little apples made for great ammo playing war with the neighbor kids. Hopefully your Wife can make one last pie. Wishing you and yours a happy and healthy new year.

Glen

After my fourth shot my PSA report shows that I went from 800 (800) to 7! My doctor was as excited as I was.I hope I can keep it up. Sadly, I can't keep anything else up:-).

Glad to read your new score and it seems as if when the PSA scores are down nothing else goes up. What an incredible decrease in your PSA score.

BTW I found a great YouTube video just now on degarelix (Firmagon).

http://www.youtube.com/watch?v=lYjaY_7Gkec

Best wishes and keep it up or should I say keep it down :-)

Amazing results. 0.9.46 in other words no significant change. Going on six months since last Firmagon injection.

Hi Glen,

Unfortunately, I've had to take time off from my injections. I had a minor heart attack and I fell into the hands of cardiologists who wanted to take me 'all the way' with it, i.e., triple by-pass. This was a day after a stent was put in and the failed attempt at another stent, including two shocks to keep me from expiring! I've just finished 3 weeks of recovery. It feels like being struck by a big truck. I wonder where my PSA is at now.

Jogger (Jack)

Hi Jack,

It was shocking to read your post. No pun intended. What happens now without the stents? Is your Cardiologist going to try again? I'm sure your PSA readings are low since Firmagon seems to knock the testosterone down. My Oncologist said I was officially in remission now. I asked if I was still a stage 4 and the answer was yes but I could be in remission for sometime...months and even years since my PSA readings have been so low for sometime since August.

Wishing you a speedy recovery.
Glen

I an new to Firmagon (Degerelix), had my second injection on Mar 22. The stomach pain was no where near the level of the first double injection. I have experienced hip pain following both injections. Was almost back to "normal" until second shot, then it started again. Ever heard of this? My PSA was 40 in January, bone scan confirmed metastasis to sacrum and pelvis. Last Lupron was back in Sept 09, on it since 06. Went on Casodex in Jan, PSA dropped to 7.3 by Feb 11, then had first Firmagon. PSA now 7.7. Dr thinks it could be due to overdue on second shot by a week or so (schedule screw up on their part).
Radical in 2000, Radiation on 05, Lupron 06. Gleason 8.

Joining the string

Anyone experience any hip pain while on hormone therapy?

Welcome CaptnJack,

Sorry to hear you are going through a painful experience with your therapy. I never experienced hip pain nor heard of hip pain complaints from hormone therapy but then again I'm only going on my own experience and what members state on these boards. I imagine since you already had metastasis to the hip that possibly the Firmagon injection created a reaction of some sort. From what I have read, Firmagon lowers testosterone immediately which seems to feed those nasty prostate cancer cells. What were your testosterone levels before and after your injections?

Best regards,
Glen

This is my first post as caregiver to my husband, John.
Didn't plan on participating until final test results of lymph node biopsy... but in reading about Firmagon, I couldn't wait.

Some information
79 years old
Gleason score (5+4) 9
Stage 3 or 4 depending on lymph results
Bone scan, no involvement

My question is...I've been reading about pain after injections of Firmagon, which he had late yesterday afternoon. At the moment, he's still asleep, but if he's in pain may I give him one of my pills 'Hydrocodone' (which I got after my dental implant.. but didn't need)

He's supposed to avoid blood thinners because of his pending biopsy... and don't know if this would fall in that category. Hope someone can respond before he wakes...
Thanks,
Joyce

Hi John,

Are you taking any Hormone therapy? If not you're doing really well after fifteen years. Keep up the good work. Mine's still staying down below 0.1 with no shots since August.
I'll let you know my next reading in May.

Take care,
Glen

Hi Alexandr,

I'm sorry to hear your Father has this dreaded disease and he's lucky to have you as his support member. I searched Ferring Pharmaceutical company's website and discovered an office in Moscow for you to contact.

Ferring Pharmaceuticals B.V.
Representative Office
Kosmodamianskaya nab., 52, bld. 4
115054 Moscow
Russia
Tel.: +7 495 287 0343
Fax: +7 495 287 0342

I was prescribed Estradoil Transdermal patches when I was first diagnosed from a company named Mylan. Here's their link. http://www.mylan.com/

Good luck and hopefully these drugs will be available for your Father in Russia. Keep me informed of his progress.

Best wishes,
Glen

Hi Glen,

I've been reading about your success with firmagon. I had my first two shots three weeks ago and get my next shot in 5 days. I've had radiation therepy four years ago. My psa went down to o.5 to 0.6 fo about 9 months and then started back up; the last reading inApril was 3.8.

I'm excited to read about the successes, and especially yours. I get another psa check in July. I guess that'll give me a good checkpoint. I'm prayerfully hopeful that it'll be down .

thx for "listening"

wayne2

Hi Wayne,

Welcome! Glad you found these boards so we can compare our journey fighting Pca. Firmagon seems to be working for you. Unfortunately my PSA results rose to to 2.8 last week. Previous PSA was 0.9. three months ago. Time for another injection.

Best wishes,
Glen

Hi Glen....Thx for the note. I unexpectedly had my psa checked when I went in for my second injection on May 14th............It was 0.4.Down from 3.8 and the lowest I can remember !! I hope this hormone keeps on working. My doc says 2 to 3 years, but I'm praying for more and from what I've read here and elsewhere. I hope your next injection knocks yours down again !!

prayers.....Les

Wayne,

That's great news...looks as though Firmagon is working for you and I bet your PSA will stay down for sometime. Was your Doctor referring to the "2-3 years" as the time frame before becoming Hormone refractory?

I spoke to my Onco today and he decided to check my PSA again next month before I receive another injection of Firmagon so I get to beat my chest a little longer :-)

Best,
Glen

I think the 2 to 3 years is the timeframe the hormones will keep the cancer contained....ie; good quality of life...................maybe even longer ?surprised that you're are stopping the hormone shots when your psa level drops. Is that normal procedure? I thought I'd be on them continuously (once a month shots).Thx for the response, and have a good memorial day.

Les (wayne2)

The pain I got after my first 5 injections was tolerable enough, but after this last shot it was tough to take, what with the hard 'knot' under the skin and the inflammation, both of which lasted a week. Another annoyance is seeing myself in the mirror. I've gone from a waist size of 36 to 40 in about two year's time, in spite of doing light but consistent exercise every day. I have to buy new pants, preferably with a stretch waist.

The pain I got after my first 5 injections was tolerable enough, but after this last shot it was tough to take, what with the hard 'knot' under the skin and the inflammation, both of which lasted a week. Another annoyance is seeing myself in the mirror. I've gone from a waist size of 36 to 40 in about two year's time, in spite of doing light but consistent exercise every day. I have to buy new pants, preferably with a stretch waist.

Jogger,

I don't like to be shirtless around people anymore although I'm told I look fine but I see a big change compared to two years ago. Yes, exercising seems to be an up hill battle. Regarding the Firrmagon injection pain, I'll lean over against a car fender or something and a spot on my stomach suddenly hurts like hell. Seems like a previous injection site where it caused a knot. Not looking forward to another injection but I guess it's better then the alternative. Talk again soon and tighten that waist.

Hi again Glen............once again, is stopping Firmagon a normal approach when psa goes down or is this a case by case decision ? I'm under the impression that I'll be getting monthly shots continuously.

Thx..............Les

Hi Les,

There doesn't seem to be any "normal" approach in dealing with Prostate Cancer since we are all snow flakes. I was told to have DaVinci RP surgery, radiation and hormone therapy by my Urologist but turned out I was a stage 4 after seeking a second opinion.??? My current Oncologist suggested Hormone therapy injections straight for two years but I opted for intermittent hormone therapy after reading Dr. Myers book and after experiencing terrible side effects from triple hormone therapy. I had extreme hot flashes, memory loss, muscle mass reduction, mood swings, exhaustion etc. After switching to Firmagon it seemed that I had lesser hot flashes and more energy but I still opted for a better quality of life. Some seem to believe that IHT can trick the body and can be reprogrammed to not produce the higher levels of testosterone which fuel PC growth for periods of time. Firmagon did keep my testosterone and PSA down for close to eight months. During my "off periods" IHT side effects slowly ceased and I was feeling like a 'Man" again. Apparently overtime Hormone therapy will cease to work at all so the idea is to prolong it's power but IHT has not been proven to have any advantage of prolonging life when compared to continuous Hormone therapy. I believe a study is under way so we'll know in a couple of years if IHT has any advantages. In other words it's quality of life versus longevity at this point. It's a hard decision to make and IHT may not be right for your circumstance.
Best to you and Prayers.
Glen

Tomorrow I have to make a decision about hormone therapy for advanced prostate cancer. I have read your posts for the past year. Given all that you experienced, would you make the same decision? My PSA has risen from 0.87 last June to 30.0 yesterday. I had seed implants in 2006 followed by 7 weeks of radiation to treat a stage 3, gleason score 7 disease. I am 62 and a stay-at-home dad for a 13 month old.

Let me jump in here to ask what concerns do you have about hormone therapy???, it would seem to be the best choice given your PSA jump, at your age I don't think any sides would affect your ability to care for your little one, and certainly you want to knock the PSA back down.
Bob

Hi jfe,

Thanks for your post and sorry I'm late getting back in time for your decision. Please explain why you were given an exact deadline to decide on Hormone therapy injections? A few day's or a couple of weeks for that matter isn't going to make all that much difference from what I've read.

To answer your question though... I wasn't a candidate for seeding, radiation or RP since my cancer spread beyond the seminal vesicles into three lymph nodes, mesenteric artery and showed peritoneal involvement based on results from a ProstaScint scan. My only option was Hormone therapy to reduce the tumors and lower my testosterone thus reducing further cancer spread. Yes, I would go with IHT again.

In your case it sounds as if Hormone therapy is a salvage therapy since you already had Brachytherapy and Radiation. Let me know your decision and best wishes.

jfe,

This is a very difficult decision to make, trust me, as I am going through the same.

The thing with hormone ablation is that it is as much a crapshoot as the primary treatments, except that hormone ablation will never cure the cancer. The crapshoot is whether it will keep your cancer at bay for an extended period (not 2-3 years), which would make the quality of life impact much more bearable. For those who go on hormone ablation and find it failing in ,say, two years, not only did it not work but the side-affects had to be endured at the same time---a terrible double whammy.

I will not go into my "story" at this time. However, safe to say we both should do something. Certainly if one elects not to go on hormone ablation, than significant life-style changes should be made (diet, exercise, stress). Even with that, chances are still greatly in the favor of the PCa still growing (but maybe at a slower pace) but at least one can feel that he is in control. Of course, the doctors are not always right and it is OUR right to demand to go on intermittant hormone ablation or ask for other forms of therapy (ie ketaconazole, estrogen), that will not be covered by insurance (who cares...they are cheap)and would have less quality of life issues (estrogen actually BUILDS bone strength).

Hi Glen......And thx so much for your input. Right now, after two injections of Firmagon (the first was the double).....I seem to be having maybe ? mild side effects so far. A little pain at the injection point for a few days, some hot flashes......sort of, maybe some forgetfulness, but at age 76 some of that is normal?.......also low sex drive :-(( and some fatigue.......but yesterday I got up at 3:30 am to take a friend fishing on Norfork lake here in Arkansas. Started fishing at 5am......caught a bunch of bass, white bass, and a nice striped bas. We quit at 8am,cleaned fish for dinner, and was napping by 10:30am:-))Hope I can keep this up a couple of times a week.

I aim to discuss the Firmagon aspects with my Urologist next time I see him in July..I get my third shot on June 16th . I'll keep you posted.....right now with my cancer back(and possibly/probably contained in the prostate according to ctscan and bone scan)i,m mainly shooting for longevity if my quality of life doesn't get much worse.

thx again ........"snowflake" Les

Hey "Snowflake",

I'm sure you can count on a high quality of life for years to come. I'd say enjoying an early morning nap with a good fishing buddy after catching all those fish at your age, you have one fantastic quality of life! Now about your sex life...:-)

That's great news about your PCa being contained. Looking forward to hearing what your Doc say's about side effects and continuing with the Firmagon homone therapy. Sounds like you got a good Urologist.

Keep fishing,
Glen

"People are like fish hooks, some are just sharper than others..."

11/2000: First visit to Urologist, age 68, PSA = 4.0
12/2005: First biopsy, nothing found, PSA = 9.0
03/2006: Second biopsy, Results: Stage 1, Gleason 3+3
04/2006: CT and bone scan negative
06/2006: Seed implant
10/2006: PSA = .05
03/2007: PSA = 1.5
03/2008: PSA = 3.0
03/2009: PSA = 6.0 CT and bone scan negative
03/2010: PSA = 9.5 CT and bone scan negative
05/2010: ADT treatment started - Double dose of Degarelix
06/2010: Second dose (single) of Degarelix

Comments on ADT (Degarelix) treatment.

First treatment started in May 2010. I was concerned about injection pain but there was practically none (similar to a flu shot). I have an "38 waist so the Doctor had plenty of fat to work with. After the injection, I was some what exhausted after my daily 30 minutes on the treadmill. This improved to normal after about 3 days. There was a minor irritation at the injection site but that was that was easily handled with 200mg aspirin (ibuprofen) 3-4 times a day for about a week.

I have increased my workout time on the treadmill to counter the side affects of possible weight gain. The urologist suggested a nutritional supplement (Prosteon by Theralogic) containing high amounts of Vitamin D and Calcium to counter potential bone loss. No hot flashes occured but erectile function is now 0. Next PSA will be done in October.

Katman,

Glad you didn't experience any injection pain. I don't look forward to another injection but... I had a good run since August '09 with Firmagon so I guess I can't complain.

Received my new test results today and my PSA doubled in two months.

5/12/10 PSA: 2.8
7/9/10 PSA: 5.79

Just had my first blood work since starting Firmagon in May and the PSA is down to 0.0. Can't get better then that. The urologist originally said that I would go for a year on the injections. Don't know if he'll want to continue injections but I assume he will.

Hi cjw749,

Sounds like you found a caring Urologist and thank you for sharing this new Hormone treatment recommendation. I read the clinical trials and Vantas has a great track record.
It kept testosterone down to castrate levels for the whole year with minimal side effects.

Timing is everything...I happen to have an appointment tomorrow to discuss my next plan of attack aince my PSA doubled recently and I was not looking forward to the Mack Truck to the abdomen scenario so I appreciate this tip and will post any updates.

In the meantime, I wish you the best of health and no "stated side effects".

medcomglen, let me know what your urologist thinks about the vantas implant. i got mine in my upper, inside arm at bicep level. it has not caused me one minute of inconvenience even during weight lifting and golf. i would gladly repeat this painless implant process next year at the 12 month juncture.

Hi CJW,

My Oncologist pointed out that since I didn't fair well previously with the Luprolides (Trelstar and Eliguard) side effects that I would be better off continuing intermittent therapy with Firmagon. Not looking forward to the abdomen injection this Friday but I guess a few days of potential stomach pain out weigh three months of exhaustion. For some reason the Lupron type drugs knocked me for a loop. Glad to hear you are doing well and still able to play golf etc.

Let's stay in touch and in the meantime, stay healthy,

Glen

Hi Glen...I always enjoy reading your comments to all on this board. I've posted some prior comments, but not sure all of them were recorded correctly.I had my fourth MACK TRUCK 10 days ago and my psa level is now down to 0.1....from 0.4 after my first two trucks. This was my fourth in the series. I mentioned intermittant shots to my Urologist and his eyes glazed over so I told him I would do more research. Could you remind me why you decided to have the shots spaced out until the psa goes up again ?? My side effects are mostly ok. I stay busy with my fishing " ministry" (my boat is named "retreat"), church stuff, computer stuff, gym ,socializing, and ice cream. The future is still uunknown, but today is what I have:-))

UR FREND..........LES

repeat

Great to see your name again Les. Your PSA results are doing great and since you're not experiencing any severe side efects other than what we all get being chemically castrated you're still on your game.

I'm on intrmittent HT for the following reasons.

·to minimize adverse events and there by improve quality of life (QoL);I was exhausted too often but not as bad umder Firmagon. I seem to be able to enjoy some libdo in between my off times which helped my MANLY depression... recently Augugst '09- June'10 experieinced low PSA and minimum castrate levels.

·to delay the progression to hormone-resistant prostate cancer; A new study came out by two Doctors attesting the results from Firmagon extended castaste levels longer thus not needing as many injections, and last but not least,,,·to reduce the costs of care.

I have stage four PCA with no bone or organ involvement so we are trying to prolong the time LHRH works into the future by dosing when PSA rises everytime.
I'm somewhat unique since I'm beyound radation, I have lymph gland involvement and was not a candidate for seeding. RP was suggested but would result in permanent loss of libdo, no nerve sapring surgery for me is available, it's too far into the seminal vesicles, RT and RP would mean potential reduced immune system, possible pads, new plastic syfincter replacement etc. so my only hope is intermittent hormone therapy hopefully with lesser side effects, free existance..seems to work so far and my quaity of life increases with time. I'll let you know after next Friday (I prolonged my Mack Truck injection one week to go fishing/camping with my daughter) Pray for me please and I'll post you my new results
Glen

Hey Glen.........HAVE A GREAT TIME WITH YOUR DAUGHTER; THOSE ARE PRECIOUS TIMES. I so enjoy your writing; it always gives me an uplift :-)) Fishing is a real peace-giving time for me , and early this month I caught a 9 + pound largemouth bass.......my biggest ever. Also been catching some walleye and striped bass(stripers). I'll see if I can post a photo in my profile.

Regarding PCA.......I had 43 radiation treatments ending in sept.,2006. psa went down tp 0.6 from 4.6 over an 24 month period then started climbing back up. I started the hormone treatment mid april this year. I had a checkup with the radiation oncologist this am. The sustitute doc was there.......real pleasant guy, but has STUBBY fingers :-))As I said last time, my psa is down to 0.1.........How long will it last ?? Nurse this am mentioned 5+ years......doc also, but they always caution with words like "who knows?",etc..........so.............who knows, but today is ok. My side effects are bothersome for a few days, especially if I think about them but overall life is good !! I'm 76 yrs young and still catching fish and having good times with wife and family.Hope you have/had a good week........

peace and prayers for you............Les

Hi Les,

Congratulations on catching your nine pounder. That must have been a gas pulling that one in. My daughter bets me when we go fishing and usually empties my wallet I hate to admit. They are special times for sure. Great photo and you look great by the way. Handsome fish too.

Got my Firmagon injection Friday and it feels like a Peterbilt hit me. More refined this time … a perfectly raised itchy red patch about 2”W and 3”L. It’s better today but still warm and tender. No other side effects yet.

Keep fishing…
Glen

Hi Glen......Sorry you got the 'ol PETERBILT symptom again :-((.........I try to just keep on truckin' when I get my shot..........my wife lets me whine for a day or two unless I go fishing. Then she thinks I'm well again..........but hey, it beats the alternative. Goin' fishin' again tomorrow. I try to get out twice a week......early; about 5am and quit before the high heat. We live in North Central arkansas and it's been warm lately......but the fishin' has been good. Have a great day/week.

keep on livin' it up :-))............Les

Hi Les,

The stomach pain subsided after five days and I only have a 2" red and round tender node now. The hot flashes started but not as severe as in the past. Overall I feel pretty good and fishing with my daughter is good therapy. We live in west central florida on the gulf and fish the intracoastal waters. We use to freshwater fish but the gators kept stealing my bass off my stringer :-)

Live Healthy,
Glen

A friend and I caught over forty fish this am on topwater.....very unusual for this time of the year. The surface temp is 90 degrees.What a great time we had; never once thought about cancer :-)).........until I started reading the blogs here again, but the words here give me great hope..........kind of like prayers :-))Thanks again for all your encouraging words and info. I get my next firmagon shot next Tuesday. It'll be my fifth month of the shots.......and the side effects seem ok, considering the alternative :-))Get my next psa test in a couple of months. Sounds like your fishing is different than mine; we don't have gators,etc.

wishing you more happy "daughter therepy",

Les

Hi Glen...I haven't written for a while and also haven't seen anything from you for a while....I hope all is going well for you.

I had another firmagon shot last thursday............a real Mack Truck as you say.
I'm now taking Plavix for some moderate arteriosclerosis(sp?)......and it SURE enlarges the red area around the 'ol tummy shot..........and I REALLY try not to touch it for a few days.
But, hey, I went fishing the next morning at 6am.......didn't catch much tho.......one of those "humbling" experiences, but it was beautiful out on the water.

hope you're having some fun.

Les

repeat

My Uncle got an hormone implant for his pca that lasts much longer then the painful shots. Is that not an option for you?

Hi Gkoper,
Are you referring to Vantas? There's been some discussion on these boards but unfortunatly I don't do well with the Lupron type therapy drugs and it's a twelve month dosing sequence. I'm preferring intermittent therapy to reduce hormonal side effects and prolong the hormone refractory situation.

This is my first posting on this board although I've been reading it for the past few months.
I was diagnosed with prostate cancer May of 2007. I chose cryosurgery to deal with the problem. Recovery from the procedure was slow and uncomfortable lasting about 9 weeks before they could remove the pubic cathetor. In hindsight, I wish I had chosen radical surgery.
My PSA was undetectable for about 6 months but then began to rise. My urologist started me on Lupron every 4 months. This worked quite well bringing my PSA down to 0.2 after 5 months. We tried staying off Lupron for 6 months with the thought that perhaps intermittent treatment would prolong the effectiveness. In May 2008, my PSA had risen again to 3.1 so we started it back up again. Once again the PSA went down but this time only to about 0.7. A bone scan was done and showed spots on a couple ribs and also the pubic bone. The doctor started me on Casadex along with continued Lupron injections. By May of 2010 my PSA was up to 5.1 so I was given my first two injections of Firmagon. He continued a one a day Casadex. My next Firmagon was exactly 5 weeks later because of travel scheduling and my PSA had risen to 12.9!!. I was really disappointed because I'd been reading the experience of the men on this board having such great success with Firmagon. Thinking perhaps a mistake had been made, I went to another lab and had a PSA done which was only 3 days later and the reading was 7.2. A drop from 12.9 to 7.2 in three days had me hopeful it was working this time. During those 3 days I had quit taking Casodex as per my doctors instructions. He later changed his mind and put me back on Casodex when his lab results came back showing my testosterone level at 34. I had blood drawn a couple days ago (3 1/2 weeks from the previous one) and my PSA was 12.6 almost unchanged from the last one at his lab. I get my next Firmagon this Friday which will be exactly 4 weeks from the previous one.
I hope this background data isn't too confusing. The question in my mind and am wanting input on from this board is this. Is it possible that Casodex fights the effectiveness of Firmagon? Have any of you had a discussion with your doctor on this subject? I appreciate and look forward to any input.
Frank

Hi Frank
I cannot give an answer you requested but your post is of great interest to me because you have previously been on Casodex and Lupron which is the present treatment I am on. Yesterday my PSA is down to 6.5 ( my history is posted way up the line here somewhere) and testosterone level is 4. I take the Lupron every 28 days and one casodex every day so I wonder why your doctor switched you to Fimagon???????
Perhaps it takes a few injections of Fimagon to start working for you( when I restarted Lupron my psa also went up for a couple of month before starting to reduce) so hang in there and please continue to post your results for us. many thanks
Bob

My father is taken Casodex 2 times per day on a even day and 3 times per day on an odd day and has the Vantas implant for almost 3 years. His PSA was estable for a short period of time. The last PSA level as of last week is 222.2. Now the Oncologist is changing from Casodex to Nizoral 2 tablets twice a day and an steroid twice a day. The Oncologist is trying other medications until insurance agreeds to cover the cost of Provenge.

My dad has an appointment with his Urologist next week and will ask if it's better to try Lupron or Firmagon instead of Vantas. Vantas is convinient and has reduces my father's testetorone to 0, but the PSA continues risen.

Hello Noniu,

I asked my doctor about Vantas and he wasn't very enthusiastic. I got the impression that his clinic hadn't used it much. It's kind of hard to remember everything these doctors say but I think he said that Vantas and Lupron are for lack of a better word of the same family of hormone treatment. Firmagon apparently is different. All things being equal and having had both, I would prefer Lupron being it can be given in a stronger dosage to last 4 months. In your father's case, perhaps Firmagon would be a better choice being his PSA has gone up to 222 on Vantas. It's something to ask his doctor about.

In regard to Provenge, I am not very hopeful that medicare will approve it any time soon. That's just my opinion but at $93,000 for the treatment and only extending life by 4 months, it's understandable. Of course, the study group whose life was only extended on average 4 months were patients who had become resistant to hormone therapy and had already received chemo. In other words, they were pretty far gone. It begs the question, what results would be obtained with earlier stage prostate cancer patients.

Please keep us informed of what the doc recomends and what the results are.

Regards,
Frank

Hello Bob,

Thanks for your response to my post. To answer your question, my doctor started me on Firmagon because my body seemed to be developing an immunity to Lupron. After having worked quite well for the past two years, my PSA had risen from 0.2 to 5.2. Seeing my PSA at 12+ after two treatments, I have to wonder if it is any better for me than Lupron. Your experience of an increase in PSA the first few injections after having been off for a while and then to see it start to go down again gives me encouragement that perhaps Firmagon can work the same way.

I had my third treatment of Firmagon day before yesterday. The soreness in my stomach is a little less than last time and I'm hopeful the reaction each injection will be less. If it works, who cares about the discomfort. I kind of like living.

Looking at your previous posts, I see you had your seed implants in 1998. That's a remarkable amount of time and it looks like the hormone therapy is working well for you. I hope for your continued success.

Yes, I'll post my progress in regard to PSA reduction and whatever else I can share as they develop.

Hi Guys,
It's heartening to me to see so many of you are still getting help from Firmagon in holding your PSA down. My doctor tells me that some men get effective results from hormone treatment for many years.
Firmagon simply didn't work for me. My PSA went racing up to 47. I'm getting treatment in Alaska and surprising as it may seem, we have clinical studies going on here that are unavailable in many states. There's a drug called ipilimumab developed by a subsidiary of Bristol Myers. It's been used with some success in treating melanoma and also in prostate cancer patients. It hasn't proven to be a silver bullet cure yet but does extend life Up until now, it was only given double blind to patients who had already undergone chemo. I was accepted into a phase III study for those who have not yet gotten chemo but were no longer responding to hormone therapy. The program calls for 4 infusions 3 weeks apart. After the first one I felt no side effects so couldn't have any clue if I was getting the real thing. 2 out of 3 get the real thing and the 3rd one a placebo. After infusion 2 I broke out with a rash which is one of the symptoms. That was encouraging. After infusion 3 I developed the runs and have been fighting that for almost a month. During the time, I've lost about 18 lbs and I'm just a small man. The way the drug is supposed to work is it bolsters the bodies own immune system enabling our own body to attack cancer cells. I get a bone scan and ct scan today and see the results Thursday. It's slow acting so may not see any results yet but I'll let you know. My PSA is now 194 but the clinical nurse said to not be alarmed. They don't pay much attention to PSA at this early stage.
Frank

Hi guys,
Im new to this forum and was diagnosed with PC in mid august. Im a 48 yr old fireman have a wife and three beautiful kids. I originally went to see a urologist for typical BPH type problems (frequent urination and clear discolored ejaculate.I just new deep down that something was wrong.Well,digital exam and PSA (8.4) revealed problems.Had a Biopsey done (ouch)and got the news mid august. 11 of my 12 biopseys tested positive for adenocarcinoma.Gleason score of 10(5+5).My world was rocked.Had lots of tests done in the last month bone scans ct scans MRI with probe,MRI of spine ultrasounds blood tests etc etc.They found stage 4 cancer with a prostate cancer lesion on my bladder and a suspitious lesion on my L4 lumbar that has yet to be confirmed.My urologist immediately put me on HT with degerelix.No major problems yet except for in the bedroom.I now enjoy sensitive chic movies,chocolates,shopping with my wife and just need to be held!!!LOL!!trying to stay positive and have great family and friends who are there for me no matter what.Reading your experiences on this forum is giving me hope for my treatment in managing this crap.I got my foot in the door at Sloan Kimmel center for prostate cancer in NYC.Dr.David Solit (Oncologist/researcher)is going to be asked a lot of questions this monday when I see him.I will keep you guys posted,thanks Wardy

WOW, Wardy, what a way to get your life rocked. And how many times can you watch "Pretty Woman" or "The Devil Wears Prada" anyway??? Seriously, you seem to have a wonderful attitude for facing this situation and it looks like you've heading someplace where there are a lot of experts to help you. Please keep us posted on your progress.

Heard some good news and bad news at my meeting with my oncologist.The good news PSA went from 8.6 before treatment to 1.13 on 9/15 to .77 as of today(only 28 days of hormone therapy).My testoterone levels are 13 and dropping.The BAD news is that My MRIs showed Extremely advanced PC with new findings on the rectum wall/and lymph nodes.Previous exams showed PC involvement on the bladder and on L4 lumbar.My Oncologist wants to put me on Casodex along with my degerelix but my liver enzymes are elevated and wants to get those numbers down first. He thinks that my PC is causing high enzyme levels.No more red wine with dinner for now dammit. I guess pomegranite juice instead of Merlot!LOL.My Oncologist said some things that really scared me and a few things that give me hope but overall im feeling pretty scared and down,but this pity party wont last long!! I am going to kick the **** out of this cancer and piss on it!!!I am young strong and will be extemely aggressive in my treatment.Diet,exercise, continued hormone therapy, positive attitude,and radiation on the horizon. Oh and dont forget hunting and fishing with my kids and friends!!Thats good therapy too!!! stay well Wardy

I recieved my 2nd shot of Degerelix on Monday. No major discomfort,but have been feeling pretty down the last couple of days.Im wondering if it has to do with the fresh dose or if its just me.Some more results came in from mondays blood test.My testosterone went from 13 up to 17 in 2 weeks time. Is that a significant change?? Im not up om my testosterone info? Thanks Wardy

Wardyboy,

After reading your initial post your positive attitude not only uplifted me but probably all the guys on this blog. Personally I was down in the dumps after receiving two Firmagon injections recently after my PSA jumped in two months from 2.7 to 5.9 but your enthusiasm has helped me to stop feeling sorry for my self if you can relate. Sucks when you cry after watching a Lexus commercial.

I think you're probably feeling the normal side effects of chemical castration. HORMONES Just wait till the moobs start growing LOL. Well at least we still have our humor.

You're a breath of fresh air and I look forward to your positive outlook and progress.

I'm not a Doctor but your slight rise in Testosterone isn't signicant. Mine was 68 while maintaining a 1- PSA score for several months.

Good Health<
G

I have to keep positive to fight the good fight. I have a monster of PC to battle.When my Oncologist(who deals only with PC at Sloan),told me that im in the top 1% of most advanced PC that hes dealt with, I cried and im still reeling from it.I have only been dealing with this for 6 weeks and have been through a lot!!!My family,friends and brother Firefighters have rallied around me.The guys in the Firehouse are working my tours for as long as I need !Several of them have called me to let me know that they too are battling PC.My employee assistance counselor for my department has just been diagnosed with PC and wants to partner up with me to share info, support etc .How about that I might be counseling my counsler!!!LOL.I think that my next step is to talk a few oncologists.I dont feel "good" with my current guy. I just feel like another patient.Hes mainly a researcher for Sloan and only sees patients 1 day a week.When I asked about diet and supplements and what "I" can do to make my body as "unfriendly" to this cancer as possible,he didnt offer much.I am going to start researching this next and any recommendations that you guys can give would be appreciated. Thanks Wardy P.S. Nice tractor Glen ! My 56 yr old Farmall tractor is like an old friend,but I drool looking at the new ones!I might be down in your area soon. Going to sneak down to Sanibel Island with my wife for a long weekend for our anniversary.Cant wait to fish and swim in that warm gulf water!! Good therapy for sure!!!

Hey Wardyboy,

If it's any consolation my Oncologist said I had two years to live probably and to get my personal affairs in order. That was three and a half years ago. I asked him on the two year anniversary about his prediction and he told me I'm still regulated by hormonal therapy and every patient is a snowflake. Throw the stats out the window and just believe in yourself and that you can control this beast. Sounds like you have a great support team behind you and some on these boards too. I too asked about diet and was told it was too late to change now. My ex-wife has worked in Oncology as an RN for 25 years and always said the ones that make it changed their lifestyle with no stress and a healthy diet. Funny you mentioned Sanibel. Had my Honeymoon at South Seas Plantation. Let me know your plans and maybe we could meet at the Bubble Room for a healthy lunch :-)

Hi Glen.....I've missed you. Your blogs really give me a good uplift. I've read wardyboy's input and really feel for him......As for me, I'm growing boobs too.........I get my eighth shot of FIRMAGON in about ten days along with a psa check. I also get these mind attacks once in a while...........WHEW !!.....NOT FUN STUFF.......but all in all I keep counting blessings and try to give back some of what I've been given............Fishing is still great, but the catchin' is lacking right now, but time on the water with friends is precious.

Wardyboy..........hang in there. I've read some info on the Mayo Clinic website about hormone treatments that is really positive. And we'll all keep praying. Thanks for sharing at the gut level......and

.....PEACE TO YOU ALL..........wayne2

Hi Wayne,

Thank you for your kind words to me and to Wardyboy. Hopefully Firmagon will keep Wardyboy's PSA in check... I've been on a roller coaster of emotions, aches, muscle pains and such after my back to back Firmagon injections in August and September but I'm doing better every day. At least my PSA dropped down to castrate levels. I don't know how you manage with continuous month to month injections. I did notice after my second injection that I experienced the same terrible exhaustion as I had before while taking Lupron so it may not be the difference in drugs but severe hormonal changes. Yes, the Moobs started growing again. My daughter said she'd loan me one of her bras but she's much bigger then I am thank the Lord. I was getting to look like my old self prior to the first injection but I'll accept the trade off. PSA will be checked again Thursday so I'll decide to have one last injection before my Cobra insurance runs out. After that I don't know what I'm going to do to pay for future injections since out of pocket is around $2,000. Hope for the best and keep on fishing :-)

Hi all,
New to this site. Does anyone know if firmagon can be used after having a radical prostatectomy and radiation, and if yes, what their experience was? My PSA is getting higher and in the last 2 weeks has gone from 3.8 to 4.73...starting to go fast! Thanks

Sure enjoyed your last note..........as usual. Yep, I think I'm up to a 36D............and get the "sleepys" a lot around noonish............good solid naps :-)).......but, staying active helps with my mental salvation .....reduces the number of brain farts experienced.
I get my seventh month injection of the Firmagon tomorrow. Had my psa checked this week...........still at 0.10......same as July.......so far so good..........hope I can stay awake long enough to finish this note........it's going on 9 pm :-).....this is all better than the alternative..............your two year "notice" to an actual 3-1/2 years SO FAR IS GREAT NEWS !!.......and you're still going STRONG !!

Comment re your $ concern: I've heard of some drug companies helping with the costs of some higher cost drugs. Firmagon is made by Ferring Pharmaceutical (looked it up)......maybe it's worth a shot contacting them..........or the urologist doing it or health center or ??

I'll get back to you after my visit to the urologist tomorrow........and fishing is still great, but the catching is tuff right now, but beautiful out on the water :-))

Here in France I have just had my double whammy 240ml shot. Its all free on the health system but on the box it says it would cost 400 euros if I were outside the system. This will be followed by a single shot every month until my next blood test in 5 months time.
My PSA had got to 17 but the urologist said that was nothing to worry about as long as Firmagon brings it down again which he is convinced it will.
I have been on various tablets since 2005 and Firmagon is currently being lauded as the latest wonder drug, so lets hope so.

After the injection I had 3 days of discomfort and went up 3 belt notches but very quickly everything came back to normal.

October 20, 2010 - 7:01am
Firmagon pain
This is my first post as caregiver to my husband, John.
Didn't plan on participating until final test results of lymph node biopsy... but in reading about Firmagon, I couldn't wait.

Some information
79 years old
Gleason score (4+5) 9
Stage 3 or 4 depending on lymph results
Bone scan, no involvement

My question is...I've been reading about pain after injections of Firmagon, which he had late yesterday afternoon. At the moment, he's still asleep, but if he's in pain may I give him one of my pills 'Hydrocodone' (which I got after my dental implant.. but didn't need)

He's supposed to avoid blood thinners because of his pending biopsy... and don't know if this would fall in that category. Hope someone can respond before he wakes...
Thanks,
Joyce

p.s. posted incorrectly, it's somewhere in with March 25th messages, so I copied and pasted again... just a newbie

p.p.s. just read up about the drug... tell your doctor...prostatic hypertrophy, urethral stricture etc. This pill is not for him, plus he just got up NO PAIN,
Thanks anyway.

After my jabs it was not exactly pain but a kind of painful discomfort with bending and twisting especially on the belt line which lasted almost three days then....all gone.

I would not have thought traditional pain killers would have been much use anyway as the pain was not muscular but it seems he did not need them anyway.

Good luck with everything

Hi Royalalbert,

My Oncologist prescribed POPOXYPHEN-apap (DARVOCET) which I took before and after my Firmagon injections. This did seem to lesson the stomach pain along with PREDNISOLONE which reduced swelling when compared to my previous injections. Again, my injection site pain was still present but my waist didn't swell as had before.

The PSA was checked last week with wonderful news of 06.91. drawn on October 18th. I plan on having another injection when my PSA rises again over 4.-5. I may have to start learning French so I can afford future Firmagon injections. Mmmm Blackmarket Firmagon? Just joking.

Wishing you the best,
Glen

Hi Glen
Funny you should mention Black Market Firmagon.
When I got my first shots the prescription was for 2 injections. The Pharmacist who had not heard of Firmagon gave me 2 boxes. When I opened them, each box had 2 shots in them. As I wouldn't have used the 2nd box I took it back a month later. He hadn't realised or even missed the 2nd box.

Had my second shot now with no after effects except belt-line discomfort and slight swelling.
Because its all free in France I am disappointed it only costs 170 euros per shot. I feel that if it were more expensive it would work better and that I am getting something out of the system!

Mind you, if I had to pay I would be sticking with Casodex, Pomegranate juice and prayer.

The american postings seem to have much more info about their disease than I ever get. My Oncologist is French and although I can't understand half what he says all I ever get is a PSA result and a gallic shrug. No Gleason scale,no testosterone scores,just PSA.

Perhaps he works on the notion The less they know,the less they worry.

Thank you for the laughs. Possibly French Doctors keep information to a minimum since it's socialized medicine and would be too costly for further explanation. Just a guess:-)I just posted this under a new discussion...Great news from Ferring...

"I contacted the Ferring Pharmaceutical Company that manufactures Firmagon(degarelix) last month regarding if they had a compassionate drug program. My Cobra Insurance was ending 10/31/10 and affording Firmagon as an out of pocket expense would be a severe financial burden. I was informed Ferring did not have a compassionate drug program for Firmagon in place but they would check on my situation and let me know.

To my surprise I received a phone call from a Ferring representative today asking for my Oncologists address so they could mail 3-4 injections for free for my future injections.

I would like to publicly convey a sincere thank you to all of the Ferring Pharmaceutical company employees that contributed to this compassionate decision.

Sincerely,
Glen M."

Thank you for the laughs regararding French Doctors. Possibly French Doctors keep patient information to a minimum since it's socialized medicine and would be too costly for detailed medical explanations. Just a guess:-) I just posted this under a new discussion...Great news for me from from Ferring...

"I contacted the Ferring Pharmaceutical Company that manufactures Firmagon(degarelix) last month regarding if they had a compassionate drug program. My Cobra Insurance was ending 10/31/10 and affording Firmagon as an out of pocket expense would be a severe financial burden. I was informed Ferring did not have a compassionate drug program for Firmagon in place but they would check on my situation and let me know.

To my surprise I received a phone call from a Ferring representative today asking for my Oncologists address so they could mail 3-4 injections for free for my future injections.

I would like to publicly convey a sincere thank you to all of the Ferring Pharmaceutical company employees that contributed to this compassionate decision.

Sincerely,
Glen M."

WHEW...............psa is still 0.1...............But the last two injections have been VERY PAINFUL.Had another one today; taking tylenol...................but still better than the alternative.

I'm happy for you, Glen regarding the company send someeds your way.............HOORAY AND CELEBRATIONS. !!

Any ideas re pain? I'm gonna go lay down and read...........BUT !!!I DID FISH FOR TWO HOURS AFTER MY INJECTION TODAY..........GOT TWO NICE BASS........PUT 'EM BACK.....................Then the pain hit me...................but I am blessed!!

good wishes and prayers to all..................Les N.

In 2004 my husband had a radical prostatectomy. Still, his PSA never went to 0.0 and after four years of very, very slow increases he then had 42 radiation treatments. The radiation treatments also did not bring his PSA to 0.0. Finally, in June he stared on Firmagon and his August PSA was 0.1. HOORRAAYY! He's sheduled for a PSA again this month and I hope it will either be the same or finally 0.0. He is having soreness at the injection site after each injection. His hot flashes and mine coincide which is quite amusing to some people. He is 70, is on medication for high blood pressure and his heart, works out three times a week at the local gym and all in all is in realtively good health. We eat a little stangely because I have Graves Disease and Celiac Disease which cause us to eat more fruits and vegetables, gluten free everything (he still eats cookies and other goodies at times, and we seem to feel better.

It is my understanding that they cannot measure down to 0.0 if he is at 0.1 we all would take that in a minute.

Hi bobmack,

Good to hear you are a six year survivor and still going strong. I can relate about the back to back injections of hormone therapy and Firmagon. Had two injections back in August and September and I was really hit with exhaustion and weight gain. 5'-4" 165 lbs. Use to be 150 lbs. By the way, I noticed there is a Newsletter for noscapine. Are you a subscriber? If not here's the link to copy and paste or click on it. Sounds interesting since it use to be a cough syrup.

http://pcref.org/mailing/?p=subscribe&id=1

Here's a recent study too:
http://www.upi.com/Science_News/2010/03/23/Noscapine-use-for-prostate-cancer-studied/UPI-40241269377522/

Good luck with your next Firmagon injection. If it's in your spine you probably should remain on a monthly schedule and hopefully the "Doctor will see you now" :-) What other herbal supplements are you taking for your Prostate?

Best of health in the meantime.

We're in Texas visiting a son and his wife for Thanksgiving. I had my last firmagon shot on Friday, Nov. 12th...............went fishing that afternoon and active in the boat ; lots of pain at the injection site that night and for several days after. I still have a hard knot at the site........about the size of a half dollar. This new for me. I read that the injection forms a nodule and then emits over a 28 day period..........anyone else have this happen ?

However............I still am blessed and have much to be thankful for.I pray for blessings for all this holiday.

wayne2

I take 200mg Ibuprofen before the shot and then 2-4 times a day for a week or two to take care of the injection pain. That makes the pain very tolerable. The knot from my 11/2 shot (left of belly button) is still there but almost gone. The next shot (number 9 since May) will be 12/2. The doctor will switch to the right of the belly button so there should be no problem. Alternating sides every month is the only way to go.

Katman,

Great advise...hopefully Wayne2 will see your post. He finally experienced the "hard knot sitiation" injection site pain. I always switch from side to side too but I think the raised itchy patch occurs when the drug is injected at a certain angle into firm tissue. Having a little fat probably helps deflect the medication :-)

My urologist just switched me from Degarelix to Eligard. The nice thing about Eligard is that it lasts for 4 months and there was no injection site discomfort or hard knot. I got the impression that the length of the needle was only about 1/2 as long as the one for Degarelix but I could be wrong about that. Also the general tired feeling that I had for 3-5 days after Degarelix is gone. The doc said we can always switch back to Degarelix if there is any problem with Eligard. I guess the acid test for Eligard for me is if the PSA is still 0.0 which is where it is now after 7 months of Degarelix.

Happy belated Thanksgiving Wayne,

Sorry to hear you finally joined the club of "hard knots" amongst us "Firmagoners." Take two Darvocets...nope, can't take them anymore they were pulled from the shelves recently.

I took Darvocet and a steroid anti-inflammatory medication before and after which really helped with my injection pain.

My last PSA was only 0.7 up from 0.69 a couple of months earlier so I was thankful and was blessed too. I even saved a ton of money getting my PSA test from a walk in place called Any Lab Test Now. Only $39. with my ten dollar coupon I found in a local health magazine. I use to pay upwards of $80 with insurance read by the same company. That makes no sense does it? Haven't received my free Firmagon yet due to a mix-up between my Oncologists wholesaler and who Ferring uses to distribute Firmagon but I'm still hopeful.

By the way, my daughters boyfriend caught a goliath grouper they think weighed 300 lbs. 12 miles offshore at a reef. Had to release it of course.

Happy Fishing!

Thanks, Glen for your note.......always gives me an uplift. Thanks to you too, Katman. I get another "HARD KNOT" tomorrow and still have part of the last knot. I'll try taking some tylenol beforehand........and then cool it rather than getting too active around the knot.The nurse does rotate around the front of my belly...........four different positions in kind of a square pattern.Tomorrow is my ninth shot.Glen, your psa "rise" to 0.7 from 0.69 might be insignificant...........margin of error ?
A 300 lb grouper ??? WOW.........Did it have to be released or just too bug to handle ? I hope your free Firmagon arrives for you soon.

WARDYBOY..............Congrats on your low psa !!!

blessing wishes to all.............wayne

Hi Glen, There is another site more descritive about this cough syrup. Many pitfalls were verified, so it should be taken seriously.
Have a look at;
http://www.psa-rising.com/mednews/tx/62-off-label/61-cough-medicine-noscapine-prostate-cancer-study

Regards
VGama

VGama,
Thanks for sharing that information. This looked very promising to stop the growth of lymph node involvement. I'll ask my Oncologist about Noscapine.

Best regards,
Glen

Where do you apply the capcaicin?

I havent been on this board in a bit.Busy with the holidays and Hunting season!My son took his first deer this year and boy was i proud.I have been feeling great,especially since having the stent in my bladder removed.That sucker was causing me grief for over 9 weeks!!Well I have been taking Casodex daily along with my monthly Degerelix injection for about 4 weeks now and just got my latest PSA test results. Im down to .10 !!!!! Hopefully it goes even closer to 0 next month.Were going to get some MRIs done soon to get a look at whats going on and maybe radiation in a couple of months. Wardy

Wardyboy,
Congratulations on your lower PSA. Great news. Surely it goes to the zeros you say.

I guess I'm about as pleased as you are with your .10 as I am with my 1, having started from 800 twelve shots ago.

Hi Guys,
I'm heartened to hear so many of you guys are responding well to firmagon. My doctor tells me that some men remain receptive to hormone treatment for years.
Firmagon simply hasn't worked for me. My PSA shot up to 47 so I just went back on Lupron. A new clinical study became available for me here in Alaska called ipilimumab. It is a drug developed by Bristol Myers and the way it works is the drug bolsters the bodies own immune system allowing our own body to attack cancer cells. It's been used with some success with melanoma and I think it may be close to FDA approval for that cancer. It's also had success in extending life for prostate cancer patients. So far, it's been available in studies for men who have received chemo and are not responding. I'm in a phase III study for men who haven't yet had chemo. Presumably a group who still have a lot of body strength. I was very excited to get in. It's a double blind study with 2 of 3 getting the real thing and the 3rd a placebo. I didn't have any reaction after infusion #1. Infusion #2 left me with a rash which is one of the side effects. Infustion #3 on November 5th really socked me. I've been battling lose bowels for about a month now. Lost 16 lbs and I'm a small man. Anyway, I'm sure I'm getting the real thing.
I'm getting a bone and CT scan today and will see the results on Thursday. In the mean time my PSA has risen to 194. The clinical nurse said it's not abnormal for that to happen being this is a slow acting drug. Eventually, the PSA should drop. I'll keep you guys posted on what develops.
Frank

I realy hope that this adventure of yours is beneficial to you not just to the ones reading your post.
The rise in PSA does not sound good. Are they giving you some assurances on the control of the cancer?
Wishing you the best
VGama

I have no assurances. It's a study program and results of programs such as this only become public after months or years or study. Being I'm obviously getting the real thing, I can be a source of update to all you guys as to whether Ipilimumab works and be able to track the progress. I'm just so very thankful to be in the program. For this phase III study, 600 men are recruited worldwide, 150 from the United States. Only about 22 states have clinics participating in the study. For that reason, I'm willing to fly back and forth from our winter home in the Phoenix area to Alaska for lab work and infusions. Never had so much attention in my life.
Will keep everyone posted as this program progresses.
Frank

While you're not exactly a newbie with several posts already made, I'd still like to extend a warm welcome. I've actually been following your posts, and agree that you are indeed fortunate to have been accepted into the phase III ipiliumamab study. Thanks for sharing your very important and informative posts about your history and progress. While some of the side effects appear to be unpleasant, you have a good idea that you did not receive the placebo. We all know there are no assurances in clinical trials, but thanks to men like you who participate, there will be hope for others. I might like to offer one suggestion: since you are no longer taking the Firmagon injections, and this thread is mostly about Firmagon, you might consider starting a new thread about ipiliumamab and posting your history/updates there for a wider audience of PCa forum readers who might learn/benefit from your experiences--just a suggestion.

Hoping that your recent (and future) scans provide good news and that you respond favorably to the drugs. Wishing you well and much success.
mrs pjd

Thanks for your suggestion of starting a new thread specific to Ipilumamab. That would be more appropriate. Anyone on this thread interested in following my experience can go to that thread.
Frank

That's wonderful you responded that fast. You may want to see if you can have a ProstaScint scan too with your other scans. Read my first blogs and you'll see why. In the meantime congrats to your Son, I just finished some great venison from North FLorida. Did you ever maske it down to Sanibel? Wishing you and yours a Happy Holida Season.
Glen

That's wonderful you responded that fast. You may want to see if you can have a ProstaScint scan too with your other scans. Read my first blogs and you'll see why. In the meantime congrats to your Son, I just finished some great venison from North FLorida. Did you ever maske it down to Sanibel? Wishing you and yours a Happy Holiday Season.
Glen

I seem to be responding well to the degerelix/casodex combo.I pray that it goes from .10 to zero.Im doing as much as possible with diet/supplements and now that my stent is out,exercise.I stay very busy around my property but i am not working(Fireman). My doctors dont think that I will be running into burning buildings with 100lbs of equipment on my back anymore. I miss it terribly! I truely love being a fireman. Im pretty sure that all the crap that I was exposed to at ground zero on 9/11 has something to do with my aggressive/extensive cancer.Sorry for getting off topic(damm hormones).Glen I did get down to Sanibel back in October.Weather and water and fishing was great.Just what the doctor ordered!!!.........I wish you all a joyous and healthier Holiday. I know what you guys want for Christmas and pray it comes true!!! Wardy