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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...

AKFrank
Posts: 9
Joined: Aug 2010

As was suggested to me, I started a new discussion board under ipilumamab. If anyone is interested in how it's working out for me, visit that site.
Frank

AKFrank
Posts: 9
Joined: Aug 2010

As was suggested to me, I started a new discussion board under ipilumamab. If anyone is interested in how it's working out for me, visit that site.
Frank

mrspjd
Posts: 688
Joined: Apr 2010

Hi Frank,
This Firmagon thread is getting a bit unwieldy and it’s difficult to find some new posts. I’ve been trying to locate the recent post you referred to today with the latest update on your experience in the “Ipiliumamab” or is it “Ipilimumab” clinical trial, however I’m unable to find it. I had previously suggested you start a new thread about your experience with the Ipilimumab trial, but perhaps you might have misunderstood or be unfamiliar with the “how to’s” of this CSN forum (something we all have been through at one time or another).

A “new thread” refers to starting a new discussion topic on the PCa discussion board. Since you are no longer using Firmagon and instead in a Ipilimumab trial, that would seem to make sense so that others interested could more easily find the info you would share about that clinical trial experience. In order to create or start a new discussion subject/topic, go to the main PCa discussion page http://csn.cancer.org/forum/126 and click on the heading “Post new discussion topic” located on the top left just above the list of all the PCa discussion topics. You might want to call your discussion topic something like “Ipilimumab clinical trial.” Perhaps under that new “thread” or “discussion” that you create, you might include a PCa history & summary of your txs, including info about the study you are currently enrolled in. Hope that helps. I look forward to reading your updates.

Wishing you all the best.

wardyboy
Posts: 13
Joined: Sep 2010

Hi Guys, thought id check in here after being away for several months. I just finished up 9 weeks of radiation and everything went smoothly. Very few sides effects even though they hit my bladder/rectum, prostate and lymph nodes and whole prostate bed! Im continuing my casodex/degerelix combo. My PSA has remained less than .01 which is great!! However my Degerelix shot yesterday knocked the crap out of me today.VERY tired, achey,and running a fever of about 101.3 currently. This hasnt happened before and im slightly concerned.Im waiting for my Drs. to call back. I suspect that the 9 weeks of rad has left me weak and thats why im having this response.Anyone else have a response like this?? My future holds SRT rad to my L4 lumbar and continued hormone therapy. My Oncologist at Sloan wants me on full time HT for the next 3yrs!!! I was very upset to hear this.I was hoping to do 2yrs and then go on intermittant HT so I can get some mojo back. HT is really starting to show its effects after almost one year, going to need a bra soon!!LOL or is that called a Bro or Manzire!!LOL.Still keepin my spirits up although i do have some down days.I was supposed to go striper fishing today if i didnt have this Dam fever and feel like crap.Taking the whole family to Ireland in early July!! Lookin foward to that! Hope all is going well for my brothers here on this forum. Thanks Wardy

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

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 make it down to Sanibel? Wishing you and yours a Happy Holiday Season.
Glen

Elle Mae
Posts: 3
Joined: Jan 2011

Hi Glen,
I am new to this posting. My husband, who is 61 and had normal psa levels every year, April 2010 was 1.0 was diagnosed with Prostate Cancer Gleason Score 10 with bone mets. He received his first Firmagon shot on 12/23 and is doing well. We saw the oncologist today who feels that right now Firmagon is the best choice of treatment avoiding chemo. Feels that quality of life can be maintained on Firmagon and depending upon how my husband's body responds to this treatment hopefully can delay chemo. Reading your postings are very positive to me which in return I share with my husband who isn't being so positive at the moment. I wanted you to know that your postings are helping me to think positive and thus try and keep my husband in positive spirits. Thank you

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

Hi Elle Mae,

Thank you for making me feel all warm and fuzzy knowing I have spread some hope for you.

For a Guy to suddenly loose your manhood and knowing you may begin to grow "moobs" can be very devastating especially for us Men that like to beat our chests.

I attended a seminar this past Saturday given by Dr. "Snuffy" Myers, Medical Oncologist and Cancer survivor. He stated that patients need a good motivator to live and fight this disease because of hormonal changes causing depression. His own motivation to fight his cancer was his grandchildren. I related to that because I was in deep depression over my disease progression but one-day my 17-yr. old daughter said she wanted me to live to see her graduate school and get married someday. This really woke me up out of my depression. Someone needed me to stay alive and because of this mutual bond she has given me the strength to fight and not give up hope. I would recommend your Husband read Dr Myers book and hopefully he will see that there is some light at the end of the tunnel. Your Husband already has a great motivator to stay positive...YOU!

Royalbert
Posts: 5
Joined: Sep 2010

After reading all the good news on here I was convinced that Firmagon was the answer.
After 3 injections I have just got my blood test result and PSA has gone from 13 to 67.
Seems like I need a trip back to the Consultants

Royalbert
Posts: 5
Joined: Sep 2010

After 3 months on Firmagon my PSA has gone from 16 to 68. My bone scan is showing my pelvis cancerous so will be seeing the specialist on 24th Jan to see what's next.
The service here in France is impressive. Got my disastrous blood test results last monday, already seen the Consultant,had a bone scan and starting treatment next week.
I'm just a bit disappointed in Firmagon although I read somewhere it can get worse before it gets better.
We'll see.

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Hello
I was recently diagnosed with PC --psa of 55 & a gleason score of 9.
Two options available >Surgery or radiation & if I chose surgery, radiation would also be needed.

Bone scan & ct scans show clear--no metasis.
The first (2 in stomach) firmagon shot was painful for awhile but subsided after a day. I'm scheduled for the next shot in another week. The first shot made the psa go from 55 to 17. According to urologist the next shot should take it to zero.

Just turned 65 & have a lot of living to do --hope I can make it a reality.
Bless all involved with this dreaded disease.

VascodaGama's picture
VascodaGama
Posts: 1508
Joined: Nov 2010

Hi RadHope
Sorry to know you got PCa. I hope you learn in living with it and that this forum becomes of some help to you..
For all I read in guys with your diagnosis of Gs 9 and PSA 55, surgery or radiation are only recommended if the cancer is considered localized. This can be assumed from the data retrieved at biopsy (not mentioned here), which surely are the bases taken by the doctor who recommended those treatments. You can take that as a good chance for a remission, even with a high Gleason and PSA.
It is also practice to use hormonal drugs (Firmagon) to minimize the size of the prostate (with the tumour) before treatment so that it will be easier to cut it off or it will weaken the cancer cells for a better result from RT.
All treatment causes side effects which you should be familiar with. I would recommend you to read some sites in the net by googling “side effects from prostate cancer treatments”.

I wish all goes OK in your journey.
VGama

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

THANK YOU SO MUCH for the encouraging feeedback, I truly appreciate it. I'm devasted with the findings & reading everything I can to understand the paths I must travel. Your memo was very helpful in understanding what Firmagon is attempting to do. I'm somewhat afraid to have the three gold seeds permanently implanted in my prostrate but understand this will help direct the radiation beam. I'm just starting this journey & wish you the best for yours. Firmagon already dropped my PSA to 17 & the urologist said the next shot will take it to zero. I will then start the radiation treatments a week later which hopefully will result in remission & or cure. Again THANK YOU for the response ---I wish the best for everyone.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Radiation Hopeful,

I had four gold seeds (fiducials) implanted in conjunction with my radiaiton treatment. I must say that it was pretty much a non-event and much less onerous than the biopsy.

There are two methods to implant fiducials. The first is transrectally and the second is via the perineum. My transrectal biopsy was very unpleasant so I chose the second method for fiducial placement with a local anesthetic. No lingering pain and much less chance of infection or other complication.

You have more than your share to worry about as you go forward but fiducials shouldn't be one of them. They will provide your radiological team with real time feedback on the movement of your prostate while you undergo your treatments so that the radiation can be accurately delivered and minimize potential damage to surrounding tissue and organs.

Best of luck in your journey.

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

THANK you KONGO

I read several of your previous posts & wish you the best. I had the rectum biopsy where 12 cores were removed & yes it wasn't pleasant. My urologist is doing the rectum procedure to implant the seeds, I must take medicine prior to, during & after the procedure to prevent infection. Due to the high Gleason score I was told they have to do a wide beam (IMRT/IGRT)type of radiation due to statistics indication microscopic cells could be in the vesicles & or lymph nodes. I was also told Surgery would require radiation if I chose that route. IF the cancer is in the prostrate only (unlikely) it would be a home run. Both the urologist & radiation oncologist strongly recommended the external radiation procedure. Thus I'm going that route & will try to maintain stamina through proper nutrition. Thanks again for the reply, I'm glad I found this site.
Blessings & prayers to all facing this dilema.
How are you feeling regarding the radiation approach?

VascodaGama's picture
VascodaGama
Posts: 1508
Joined: Nov 2010

Hi Radhope
The decision on a new treatment is very challenging. We always have to thing on a long term affair with the culprit, even if we aspire for a quick end. I have been on this bumpy road for ten years and have done the most classical protocols in the best institutions, with the intent of getting rid of the cancer. Nowadays I see it more as a chronic disease which I will continuously have under check. Quality of life has been important to me.
There is another forum with hot discussions on several treatments seen from newer perspective. You may as well give it a look to get ideas on your choosen treatment.
http://www.healthboards.com/boards/showthread.php?t=750224
http://www.healthboards.com/boards/showthread.php?t=755409
Good luck to you in sorting out things.

Merry Christmas
VGama

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Hello VGama

Thank you for the reply--appreciate it

After looking at the sites you noted, I believe my decision to go with external beam & hormone therapy may be appropriate for my situation. I sure hope I don't encounter any severe side affects.
THANK YOU & MAY YOU HAVE A WONDERFUL CHRISTMAS.

Radiation Hopeful

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

repeat

wayne2's picture
wayne2
Posts: 31
Joined: Apr 2010

Hi All..........GLEN,RADHOPE,VGAMA,KONGO, AND ALL SURVIVORS...........WHAT A BLESSING IT HAS BEEN TO READ ALL THE MESSAGES.........I'M GETTING ANOTHER PSA NEXT MONTH........BEEN AT 0.1 FOR A WHILE NOW...........6 MONTHS. THE NEXT SHOT WILL BE MY TENTH MONTH OF FIRMAGON. tHE WAIT BETWEEN SHOTS THIS TIME WILL BE FIVE WEEKS INSTEAD OF THE USUAL FOUR..........FOR SCHEDULING CONVENIENCE I GUESS. THE KNOT FACTOR WAS BETTER THIS LAST TIME, AND WE'RE HAVING GOOD FRIENDS OVER FOR DINNER TOMORROW............SO BLESSINGS TO ALL AND THANKS FOR BEING THERE.

MERRY CHRISTMAS...

WAYNE

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

I can relate to your statement since I was diagnosed at age 56. At least yours hasn't spread too far. Glad to see your PSA lowered that fast too. Hopefully you will receive another good report and an early Christmas gift as I have had recently with low low test result numbers from Firmagon. My last shot was in September and I'm still below the one mark. It's a tough decison to have or not to have surgery but I assume you have educated yourself on all the pros and cons. I was informed to have surgery too in the beginning but after calculating my grade, stage and PSA in the Partin Table, surgery wasn't an option for me personally. I also had a ProstaScint scan that showed lymph gland involvement which proved I made the right decision. I feel for you having to go through this during the Holidays but no time is the right time to be faced with this.

Wishing you the Best and enjoy the Holidays,
Glen

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Hello Glen

Well --I got my second shot, it hurt a little but now feels "ok"---won't know results of PSA until I get another blood test around mid-January.
Question> did you take any medication for the bones since the drugs affect the bones by making them thin? The radiation treatments start around week of January 17th.

Thanks in advance for your reply

Radiation Hopeful

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Hello Glen

I had my first stomach (2) shots of Firmagon as I indicated in a earlier thread--second shot in another week (only one shot this time) with NO side affects on the first --other than a little pain in the injection site for a day or two. It hurt when I would bend down etc. but it eventually went away. It lowered my PSA from 55 to 17 thus it works. According to my urologist the scond shot should lower the PSA to zero. Keep in touch & I'll let you know how it goes. I'm having the three gold seeds inserted in the prostrate in a few weeks after the holiday --preparing for external beam radiation.
Hope this info helps you --my Gleason score was a 9 & Psa was 55 last month in November--2010.

I love tractors (have a Oliver & a International-old ones that still work)& see you are on one---what is it?

Rdiation Hopeful

VascodaGama's picture
VascodaGama
Posts: 1508
Joined: Nov 2010

Hi Glen
Congratulations on your earlier Christmas Gift at the low level. Hopefully that will repeat in 2011.
Have a Merry Christmas
VGama

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Hello VGama

I too am glad to hear Glen had a good report.
Just had my second shot of Firmagon --don't know results until I get another PSA blood test around end of January 2011. My radiation treatments will start around the week of January 17th 2011 & continue into March or April. I'm watching my diet & taking some vitamines to help the bones since the drugs thin the bones.

Have a HAPPY HOLIDAY--look forward to future postings

Radiation Hopeful

VascodaGama's picture
VascodaGama
Posts: 1508
Joined: Nov 2010

Hi Radhope
It is nice to know that you reached a decision on the type of RT you will undertake in January. I am surprised for the length of the treatment (January to April). Surely you will do well and have peace of mind once all is over.
Both, RT and low testosterone affect bone mass, however, the tendency for bone loss is higher in guys in continuous ADT (androgen deprivation) for long periods, as a prime treatment.

You could take now a bone density test to serve you as a base in future decisions. My BDT detected osteopenia in the lumbar and femur neck in a very low percentage. But my doctor recommended me to take a weekly bisphosphonate (70mg) tablet since I started ADT.
I suggest you to do some physical exercises as its anabolic effect are good in countering the side effects from RT, as well as it helps in avoiding bone loss. You will need to consume foods with plenty of calcium and vitamin D, for bone build up, not only supplements.

I wish you the best in the treatment. Meanwhile enjoy the New Year.
VGama

mrspjd
Posts: 688
Joined: Apr 2010

Am always interested in learning. Your post indicated that RT affects bone mass...so wondering if you might elaborate on how that takes place, separately or isolated from ADT. I'm aware of the effect that ADT has on bone health from lack of testosterone/DHT, but did not know that RT does as well. How does this (bone mass loss) occur from RT for PCa tx? Thanks.

VascodaGama's picture
VascodaGama
Posts: 1508
Joined: Nov 2010

reapeted;

mrspjd
Posts: 688
Joined: Apr 2010

Vasco,
I've reviewed some of the info links you posted & similar info previous to your postings. In regard to radiation in space, we are exposed to radiation every day right here on earth too. In space, while astronauts are exposed in their protective outerwear "space suits" or inside the craft, their radiation exposure is full body, not specific/localized as is IMRT/IGRT, used most often today for PCa RT tx. As to the matter of pelvic RT exposure, the studies you referenced (and others) were done with women dx with gynecological cancers who also may have been post menopausal and/or had hormone txs, so any pelvic/hip fractures may have resulted from hormone reduction. Also, EBRT (an older form of RT), may have posed more risk for women in those studies. In addition, that exposure was not whole body (as in whole body bone mass loss). It is my belief that any potential bone cell death, possibly occuring as a result of localized PCa RT, has the ability to regenerate, but that is another matter, different from whole body bone mass loss. I would agree that RT, like any PCa tx, has it's share of possible side effect risks, whether immediate or future. However, I do not see the correlation of how external RT in the localized tx of PCa can cause whole body bone mass loss as you initially indicated.
Best.

VascodaGama's picture
VascodaGama
Posts: 1508
Joined: Nov 2010

Hi MRSPJD,
I have been following with interest some studies done in Japan in regards to the after effects in atomic bomb survivors, particularly in respect to the radiation we patients are continuously exposed when taking so many CT scans, Prostascint scans, etc. I have also participated in a medical conference on the theme “Radiotherapy and its Long-term Effects”. Recently my interest in the matter was triggered with regards to the astronauts loss of bone mass due to exposure to space radiation and the near-zero gravity.
There exits many data and information on the subject. Just google and follow links, if that is of your interest.

You can read about the findings by Professor Ted Bateman, PhD, from Clemson University at this site;
http://www.rense.com/general74/CATTN.HTM
It says; “…The scientific world has been shaken by a report from Clemson University that a single therapeutic dose of radiation can cause appreciable bone loss.”

Dr. Bateman comments like this; “… astronauts in space can lose about as much bone in a month as an average senior citizen loses in a year here on Earth. Scientists have long known one cause of bone loss is the near-zero-gravity of space. Using micro-computed tomography in studies on mice, Bateman found that space radiation rapidly attacks bone health.” (http://www.nsbri.org/projects/indivProject.asp?id=412&projID=134)

In another report they say “According to a recent article in the Journal of the American Medical Association, there is a 60-200% increase in hip fracture rates following radiation treatment for pelvic cancers in women. Breaking a hip often causes a large decline in quality of life and leads to death in approximately 20% of those affected” (http://medicalphysicsweb.org/cws/article/research/31544)

I wish you find what you looking for. Happy New Year.
VGama

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Once again >Thank YOU for the memo regarding bone loss. I will take supplements & exercise to keep my bones strong during the radiation treatments. My wife is also changing my diet so I eat more healthy foods. I will talk to my family doctor about a bone density test as you mentioned.
When I say January to April --radiation treatments will be starting the end of January & continue for 9 weeks with weekends off. I hope to have strenghth & stamina when Spring arrives. Once the weather is better I can then take walks etc. During the winter months, I will try & shovel snow plus plow with my garden tractor in an attempt to maintain a exercise routine.
We have a pellet stove & I fill the bucket daily by emptying 40 pound bags of pellets into a container then filling the bucket from that. Carrying the bucket into the stove area requires the use of muscles.
My wife found two articles on the web indicating hormone therapy first then radiation were the most current approaches showing promise of a cure from this dreaded disease.

Thanks again for the sound advice --- I appreciate your feedback

Radiation Hopeful

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Repeat

VascodaGama's picture
VascodaGama
Posts: 1508
Joined: Nov 2010

Hi Radhope
I believe you are now more relaxed and prepared for the “T” day. You did your researches so you know about what you can expect during and after the treatment.
In your last post you commented that you have lost 20 pounds of weight due to your new diet. I would suggest you to balance what you are eating, particularly now that you will start your treatment. You need to be fit and healthy, so you should not avoid anything during this period. You can go back to your new diet once all is over and you are more in command of yourself.
I wish you the best.
VGama

wardyboy
Posts: 13
Joined: Sep 2010

Got my 5th injection 2 days ago.When I read posts on this thread about the pain some of you guys were experiencing from these shots,I thought you guys were wimps!!LOL!!Well,now im a wimp too!! It hurts like heck this time and my injection site is bright red and hard like a rock. Its getting better so im not too concerned. Had to take some Ibuprofin the first day and I had to slow down a bit....I also got my latest PSA. The reort says "Less than .10" !! They didnt give a specific number. Am I getting the most accurate PSA test??? Its a Standard Prostate-Specific Ag,Serum. Regardless,Im happy with the report. Wardy

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Hi Wardboy

Sorry to hear about your discomfort ---how were the previous 4 shots? Do you think they may have injected it into a muscle instead of the fat section of the stomach? Your readings of .10 are fantastic. What was the name of the drug? Lupron or Degeralix? As always I wish you & everyone going through this journey the best of wishes & keep everyone in my prayers.

Radiation Hopeful

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Hello VGama
Thank you for the reply--appreciate it. I will try my best to stay fit & healthy.
I read a post yesterday entitled Prostrate Cancer Diary obout a individual that went through the radiation treatment. He detailed the exprriences encountered every day back in Oct. 2004 to Dec. 2005. I wrote him a memo & asked how he is doing today in 2011. He was kind enough to reply & informed me he now has leukemia. This scares me somewhat as to did I make the right decision to go with radiation? This coming Wednesday, I'm having the 3 gold seeds inserted then it's a couple days wait until I go to the hospital for a cast fitting. I don't know if they had such methods as gold seeds back in 2004 thus I sent another memo & asked ---didn't receive a answer yet.
Anyhow Thank you again for your reply. If you can add anything to what I noted , please respond.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Hi Hopeful,

I can understand why the response from the man who underwent radiation several years ago and now has leukemia could be disconcerting. I don't believe scientists know exactly why leukemia develops and, of course, there are many variants. Tobacco use and exposure to large amounts of radiation are enviornmental factors that have been shown to increase the risk of leukemia. But the dosages that caused leukemia in many people, such as the Japanese who suffered after the atomic bombs were dropped in WWII, received a much, much higher full body dosage of radiation than what you would ever see in an IMRT enviornment. The fiducial placement will help your radiological team develop a dosage plan that minimizes radiation to tissue and organs near your prostate.

From the information you relayed, it's unclear what type of EBRT the other man had, whether or not it was to the general pelvic region or very accurately placed as is done in an IMRT procedure. We also have no way of knowing if there were other factors that may have caused his leukemia and whether it was in any way at all related to the radiation treatment he had.

I read of a study in France that looked at 13,000 patients who received EBRT in the mid-90s for various forms of cancer. From this group, 35 had developed leukemia by 2005. That's like 0.26 percent. As I recall, the authors could not asertain if there was a linkage to the radiation or not as the number was so low it approached the occurence of leukemia in the total population. As IMRT today is much more accurate that EBRT of 15 years ago I would guess that the risk is even less.

Of course you can't eliminate all risk and some people do indeed develop seconday cancers from radiation treatment. Some people (certainly not many) develop sepsis after surgery and die. I think it's a matter of understanding the risks involved with any treatment procedure and making a risk/reward analysis with your eyes wide open.

If you are very uncomfortable with this, perhaps you should pause or consider something else. My personal opinion is that we should be at peace with whatever treatment choice we decide upon. Most of us will continue to worry and have some degree of anxiety but if we're not convinced the course we're about to take is the best for us individually, then it's probably not the right course.

I am sure you will discuss this further with your medical team and I hope they can put your mind to rest about potential ramifications and long term side effects.

Best to you,

K

VascodaGama's picture
VascodaGama
Posts: 1508
Joined: Nov 2010

Hi Radhope,
Do not be impressed by the results of that individual. We cancer patients react differently in similar cases so, we can expect different results. His case is his and yours is yours. Believe in yourself and hope for the best next week.

Making a decision on treatment is difficult, particularly when we know that all of them have side effects that could result in a future problematic affair. But that is what Prostate cancer is all about. We try what we thing that it is the best, (for sure that we choose the best) and later wait for the good news. I have no regrets for the treatments I have endured since 2000, even though sometimes I see guys doing better than me and others do worse.

I am an IMRT survivor from 2006. I have commented about my experience in another post. But unlike you, I did not have the prostate in place at my time because I had RP in 2000. Back then, I learn about IMRT when researching about treatments. My clinical status with PSA=22.4, gleason score 2+3=5, 6-core biopsy all positive, and non-evidence of extra capsular extension, indicated that both, surgery or radiation would give me similar chances of success with a slight inclination to radiation. What turn me off for RT were the results from radiation treatment (3D-EBR) machines whose side effects at the time were horrifying. IMRT were available in MSKCC and at another institution in USA only (super expensive) and statics on treatment were practically null.
The new machines are extraordinary. Very reliable and with aggregated newer modalities such as the IGRT (with fiducials for guys with a prostate in place), which assures better results in terms of lesser side effects and long survival. I am pleased with my results even if the ultimate “cure” did not occur.
Kongo gives a good insight of older vz IMRT.

Here is a site about fiducials. You need them because prostate moves even when in therapy, requiring constant live alignments of the gantry.
http://www.ncbi.nlm.nih.gov/pubmed/15270586

I Hope you find it easier once all is over.
VGama

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

THank You to both Kongo & VGAMA for the postings about my radiation decision. As both of you indicated ---we are individuals & the results may never be the same for all. We are snowflakes in essence & I appreciate that.
I'm stickig with my choice & preparing to have the three gold seeds inserted going forward with the radiation. I understand whatever choice I made , each has it's side affects. My family doctor told me he had his prostrate removed but was considering radiation informing me the outcomes were basically the same. He chose removal years ago in N.Y. in order to get back to work ASAP without taking radiation treatments.

I didn't hear back from the man I wrote to regarding his leukemia status. If I do, I'll post what I found out.
Thanks again to both of you for posting the enlightening info--I truly appreciate it & wish the best to all.

Question> Did either of you have to sign a consent form for the seed placement? There is one statement that reads> Because medicine is not an exact science, no guarantee can be made regarding the results & the risks involved with this procedure are Infection, Bleeding & Urinary retention.
It's probably a standard form but it sure scares you. Hope he can place the 3 gold seeds so they don't hit the urethra.

Rad Hopeful

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Hopeful,

Yes, I certainly did sign an informed consent form for seed placement. The seeds are placed with ultrasound guidance. I wouldn't worry too much about them hitting the urethra as they have a pretty good view. BTW, seeds are not unique to prostate cancer. They are placed frequently anywhere in the body whenever a soft tissue tumor that is subject to movement exists.

Best,

K

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

THank YOu Kongo

You are very knowledgeable & helpful--Appreciate the post. I hve to take a antibiotic called cipro the day before , the day of & the day after the 3 gold seed insertion along with flagyl. I'm anxious to find out if the prostrate shrank any since taking the hormone drug.

Thanks again

Rad Hopeful

VascodaGama's picture
VascodaGama
Posts: 1508
Joined: Nov 2010

Hi Radhope
Firmagon shrinks the prostate to a small extent. Firmagon (Degarelix) is a GnRH receptor blocker (similar to Eligard) that will stop the fabrication of testosterone at testis, and therefore, reducing the testosterone in your body. Finasterine which is a drug of the group 5-alfa reductase inhibitor is used to inhibiting the “fabrication” of the Dihydrotestosterone (DHT) at the prostate and it reduces the size of enlarged prostates (BPH).
The low testosterone in your body will starve cancer cells to die as these live of testosterone. However some cells can survive because the adrenal glands also produce about 5% of the testosterone in our body.
The radiation therapy will confront a weaker tumor (applauses to firmagon) and it will eradicate the cancer.

On Wednesday, you can ask advice from your doctor about any preparedness. I recall that I was recommended of drinking lots of water one hour before each section to have the bladder filled (protection ????). I used to drive to the IMRT facilities clinic (50 km far from my home), and be finished in about 20 minutes (3 under radiation).

Good luck.
VGama

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Thanks VGAMA for the post

Tomorrow I'm scheduled for the three seed placement & will ask questions.
My first urologist didn't know about Firmagon & was going to give me Lupron. Glad I switched because the Firmagon appears to be working as I indicated first shot --dropped PSA from 55 to 17.
I don't know why but I'm now going to the bathroom with a strong stream. Perhaps the prostrate shrank some?
I still feel good -very mild side affects --"THANK GOD"--now I start the long journey into the unknown affects of the radiation in hopes of eliminating the cancer.
Only time will tell & I'll keep all posted. Thanks again for the advice

Rad Hopeful

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Hello VGama

Had my 3 seeds inserted this afternoon--wasn't s bad as the original 12 core biopspy.
I saw in a earlier post you are on Eligard. I only had two shots of Firmagon & didn't experience any severe side affects. The urologist was training two nurses how to implant the seeds (could't see them but heard them as he gave instructions.)
My question to you is How are you doing with the Eligard? He told me they only give the Firmagon to suppress the Testerone then Eligard every 4 months so I don't have to come in every month.
I don't want to offend the dotor but if Firmagon is working WHY change other than to extend the time frame between shots.
I don't like what I read about Eligard which is why I'm asking about the affects.
By the way my prostrate shrank from 30 to 17 cm. & the PSA on the first shot of Firmagon went from 55 to 17. On Monday the 17th I go to the hospital for start of Radiation journey.
Looking forward to response of side affects of Eligard.

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

January 10, 2011; 1.3
November 16, 2010; 0.7

Last Firmagon injection,80mg: September 2010

VascodaGama's picture
VascodaGama
Posts: 1508
Joined: Nov 2010

Radhope,
Congratulations. Great news about the seeds. Smooth, simple and no pain. Just perfect. You will be ok.

Regarding Eligard, I am doing find. I think you are more worried than you should. The difference between Firmagon and Eligard are two;
(1) Firmagon gets patients quicker to castrate levels in just 48 hours (no cause of “flare”), whether Eligard causes “flare”. Meaning that the testosterone first goes up before starting to go down, in about 10 days. Because of the “flare”, patients in advanced cancer status (ex: cancer in the spine bone or in the urethra) could experience bone pain or difficulty in urinating. To avoid this (flare), doctors prescribe an antiandrogen to be taken for one or two weeks before the Eligard shot. Even though, this practice is done usually in cases of advanced cancer, my doctor prescribes all his patients to take Cyproterone (Androcur) 2x50mg daily for two weeks before the shot (Eligard, Lupron, etc).
(2) Firmagon has only a monthly shot (I read that they are preparing shots for longer periods). Whether Eligard are manufactured for one-month, 3-months, 4-months and 6-months shots. This possibility of several applications permits better scheduling of protocols and that it also avoids monthly painful injection.

I start taking Eligard (6-month shot) in November 2010. So far the only side effects I have experienced were caused by the low level of testosterone; Fatigue during three weeks (now gone), and mild Mood changes. As I commented before, I am active in physical fitness to help me in combating the side effects. I walk almost every day approximately 7 to 8 km (3 x 2.5) with my dog and play golf on week-ends. I believe in fitness for caring of prostate cancer.

Both drugs, Firmagon and Eligard have the same principle and may differ slightly when in action in our body, but the side effects caused by the drugs are only natural in patients on long term hormonal therapy (my case not yours). One could expect equally from both; Redness and Swelling at injection spot, Fainting, Irregular heartbeat, Hypertension, Insomnia, Decreased red blood cell count, and Dizziness.

You can see on these sites descriptions of Side effects caused also by the low levels of testosterone;
http://www.eligard.com/side-effects/eligard-side-effects.aspx
http://www.drugwatch.com/firmagon/side-effects.php

Hope my explanations answer your question.

Take care
VGama

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

VGama

Thanks once again for the info, I questioned the change of one drug (Firmagon) to the other (ELigard) & was told the Firmgon is only used to suppress the PSA while the Eligard will stop total testesterone production.
I also try to stay active & got scared of what I read about the Eligard. Very happy to hear you are taking the drug without serious side affects.
Since I start the radiation next week I really didn't want to change hormone drugs. Can you tell me what dose you are taking --the 1, 3-4, or 6 month injections?
I believe you get the PSA flare based on the amount of the drug you receive. The one month injections have a low dosage while the multiple months are high thus placing a strain on your entire system. But again why change if one is working & lowering the PSA along with shrinking the prostrate---this is what bothers me. Another concern is I'm just a little guy weighing in at 120lbs. (lost 20 lbs. since November)& would have a much more severe reaction than say a 200lb. man. I'm also taking heart medication for irregular heart beat & fear taking chances. I have very few side affects using Firmagon (don't know what the PSA reading is from the second shot)& have a request in for the doctor to contact me regarding the change. I believe I mentioned earlier I had Lyme disease a few months ago (JULY2010)& still have residul side affects such as nerve damage to the fingers. I'm afraid taking the Eligard could result in even further nerve damage since this is one of the side affects---not so with Firmagon.Thanks again for the post----prayers & good wishes to all having this terrible disease.
Rad Hopeful

VascodaGama's picture
VascodaGama
Posts: 1508
Joined: Nov 2010

If you are satisfied with the firmagon (good results on weakening the cancer and non aparent side effects) then you do not need to change to Eligard. Discuss your concerns with your doctor, including your past nerves history, etc., and ask to stay on Firmagon. He will understand it or explain you a good reason for the change.

The site above on Eligard explains the difference between the various dosages. I am taking the 45mg (6-month shot).
Relax do not be anxious.

I hope all goes ok to you.
VGama

VascodaGama's picture
VascodaGama
Posts: 1508
Joined: Nov 2010

Glen,
A new number another meaning in your chronology. Hope you continue in the low levels.
I would suggest you to have the Testosterone checked too. The PSA alone may be influenced by the drug but it is the low level of the testosterone that can assure the strike on the cancer. Dr. Myers in his book recommends specifically the control on the testosterone levels as part of his protocols.
Take care,
VGama

wayne2's picture
wayne2
Posts: 31
Joined: Apr 2010

Hi Glen...............Looks like you're holding your four months after your last injection!!..............Keep the faith and keep on praying. I took my Bass photo off my profile. I think it was overwhelming somethng. I'll get a better one up soon. I'm blessed with another psa of 0.10 taken yesterday. I see my urologist tomorrow for a checkup. I've been getting the firmagon shots since last April. At my age, every good month is a HAPPY TIME. Too cold to fish right now. I try to help at church, socialize with other guys, and do some oil painting and do stuff with my wife. Tried fishing a week ago and got blown off the lake. Hope you're able to get another Firmagon shot soon.

blessings.....................wayne

VascodaGama's picture
VascodaGama
Posts: 1508
Joined: Nov 2010

Extraordinary. I like to read reports on low PSAs. And you guys are constant winners.
I wish you continuous low results.

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

VGama or anyone else with this disease.

Thanks for the posts --past & present.
I read many posts on the discussion board & noticed the majority of men afflictted with PC chose surgery & many although not all still having very low PSA scores indicating remission or cure.
To your knowledge did you ever read or hear about anyone taking hormone therapy plus radiation treatments----- having similar outcomes & or a possible total remission?
I know a lot depends on the cancer stage--is there a realistic hope of cure? A neighbor of mine (a nurse) was emphatic that there is NO cure.
Again I pray for all having this disease.
"Thanks to all that respond"

Looking forward to a response

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