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Firmagon (Degarelix) substitute for Lupron

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

After discovering this new gonadotropin drug I discussed taking this with my Oncologist and we decided to inject this in a week or two since my PSA doubled from 2.8 to 4.7 this past month.
If you have any experience with Firmagon from Ferring Pharma I would love to hear back on side effects etc. I'm a 58 yr. old two year survivor, 14.7 PSA, Gleason 7 with prominent metastactic disease.
Thanks in advance...

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

I received two 125 mg injections of Firmagon today as a booster shot. My last shot of Lupron was 12/10/08 and my PSA rose from 0.2 February to 4.7 in June. I was starting to feel my cancer was growing inside me if that's possible. Pain in lower stomach and overall agitation. The injections were a little painful and after a few hours I feel that a Mac truck hit me in the 6 packs but I must say that I feel like a new person already besides the injection site pain. My next shot will be a 85mg dose injected in the stomach in 28 days.

RRMCJIM's picture
RRMCJIM
Posts: 149
Joined: Mar 2009

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

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

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

shubbysr's picture
shubbysr
Posts: 87
Joined: Jun 2009

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)

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

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)

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

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

jogger
Posts: 47
Joined: Nov 2009

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

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

Experiencing less injection site pain with only minor swelling today. Was able to sleep finally after being up all night day of injection. Managing daily chores now with higher energy levels. I feel my testosterone levels are down which means the Cancer is no longer being fed. Words to the wise...I would recommend your Doctor prescibe a script for pain along with the initial two shot stomach injection to aliviate injection site soreness and pain. Clinical trials showed immediate 98% decrease in PSA when compared to Lupron within 28 days. Plus Casodex is not needed to reduce tumor flair as with lupron injections. Looking forward to my PSA results in a few weeks. Stay tuned :-)

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

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.

RRMCJIM's picture
RRMCJIM
Posts: 149
Joined: Mar 2009

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

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

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

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

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.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Congrats on your Number!

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

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

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

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.

califvader's picture
califvader
Posts: 108
Joined: Aug 2010

what were your experiences with lupron?

jpmpage
Posts: 13
Joined: Aug 2009

August 7, 2009

Hi Glen,
I just had my first follow-up injection yesterday of degarelix. I am surprised that today I am experiencing much more pain in the abdominal area than I did a month ago after the initial double injection. Was your experience similar at all?
--Carl

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

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

jpmpage
Posts: 13
Joined: Aug 2009

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

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

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

jpmpage
Posts: 13
Joined: Aug 2009

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

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

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

jogger
Posts: 47
Joined: Nov 2009

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

Bill91101
Posts: 34
Joined: Apr 2009

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!

jpmpage
Posts: 13
Joined: Aug 2009

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

jogger
Posts: 47
Joined: Nov 2009

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

ld34
Posts: 24
Joined: Jun 2009

I noticed that you took casodex to prevent a tumor flare.

What was the regiment for your casodex prior to or while on Firmagon?

I thank you in advance for your response.

I wish you well.

Remember ( I always have to remind myself of this)... You are not alone.

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

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

ld34
Posts: 24
Joined: Jun 2009

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?

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

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

Bill91101
Posts: 34
Joined: Apr 2009

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!

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

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

Bill91101
Posts: 34
Joined: Apr 2009

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!

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

You might find this link of interest:

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

Bill91101
Posts: 34
Joined: Apr 2009

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

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

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?

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

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

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

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

jogger
Posts: 47
Joined: Nov 2009

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.

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

August 19, PSA dropped to 0.6. from 0.8.

Bill91101
Posts: 34
Joined: Apr 2009

Good work!

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

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

Hey Bill,

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

Best,
Glen

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

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

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

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

jpmpage
Posts: 13
Joined: Aug 2009

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

Medcomglen's picture
Medcomglen
Posts: 95
Joined: Jun 2009

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

Bill91101
Posts: 34
Joined: Apr 2009

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

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

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

Larry

Bill91101
Posts: 34
Joined: Apr 2009

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

jpmpage
Posts: 13
Joined: Aug 2009

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

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