Firmagon (Degarelix) substitute for Lupron

jogger said:

degarelix
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.

First Degarelix injection
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.

gkoper said:

Pomegranate juice
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

intermitent(sp) hormone therapy
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

jpmpage said:

Two weeks behind you
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

degarelix
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

jpmpage said:

degarelix/Firmagon injection pain
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

bone scans
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

Medcomglen said:

Firmagon injections
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

PSA score
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

Medcomglen said:

PSA Results after Firmagon injections
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

Happy New Year
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)

Medcomglen said:

Happy New Year!
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

Progress report
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)