Medical Forum / Diseases and Disorders / Prostate Cancer / June 2005
Zoladex
|
|
Thread rating:  |
Larry - 27 May 2005 11:46 GMT Thanks to Marshall Schuon for sharing your decision to quit Zoladex. Our paths are very similar. I too received my first injection February 2004. My urologist wants me on it for two years. My last injection was a couple of weeks ago and it was a very emotionally draining experience - the worst I had faced. The thought of two more injections (at the prescribed 3 month intervals) depresses me no end. I suspect that the two year figure is somewhat arbitrary and recommended to fit neatly into his study rather than any particular benefit to me.
I have been doing my best to fight the SE's but I feel like I'm loosing ground on all fronts. Just the thought that I may have had my last injection is enough to make me feel better even though the effects wouldn't start wearing off for a few months.
Refresher (nickel version): Diagnosed with 14+ PSA May 2003 during routine physical. Found a urologist who specializes in PCa - biopsy negative Continued monitoring PSA - second biopsy positive Started Zoladex February 2004 Bone scan - clean Lymph node penetration - microscopic - result of lymph node dissection Treatment: Continued Zoladex - two more injections scheduled - August, November 25 EBRT treatments April-May 2004 105 PD103 Seeds June 2004 PSA's consistently 0.1/complex 0.1
My hiatus from the group for the last 6 months probably was one of the side affects. I've been sitting at my computer since 1:00 am - I've been a lousy sleeper the last couple of years. One of the SE's? And was drawn back to the NG. Maybe Divine Intervention that drew me to Marshall's post?
Larry
Gordy - 27 May 2005 17:23 GMT Yes, insomnia is but one of the lovely side effects.
> Thanks to Marshall Schuon for sharing your decision to quit Zoladex. Our > paths are very similar. I too received my first injection February 2004. My [quoted text clipped - 29 lines] > > Larry Gordy - 27 May 2005 17:24 GMT Yes, insomnia is but one of the lovely side effects.
> Thanks to Marshall Schuon for sharing your decision to quit Zoladex. Our > paths are very similar. I too received my first injection February 2004. My [quoted text clipped - 29 lines] > > Larry I. P. Freely - 27 May 2005 18:21 GMT > Thanks to Marshall Schuon for sharing your decision to quit Zoladex. Our > paths are very similar. I too received my first injection February 2004. [quoted text clipped - 3 lines] > ground on all fronts. > I've been a lousy sleeper the last couple of years. One of the SE's? Thanks, Larry. I'm adding your experience to the results of my ADT SE poll of this group for my future reference. It ain't pretty.
There is some basis for your doc's two-year recommendation; the only ADT duration proven by trials at that time to help after RP is 28 months; maybe he applied that result to your radiation-based protocol.
And, yes . . . ADT clobbers sleep in at least two ways. T deprivation impairs sleep directly (one reason we sleep more poorly as we grow old), and the hot flashes. Even my very mild flashes were enough to impair my sleep for three months following my single 28-day experiment with Zoladex.
I.P.
Clarence Crow - 27 May 2005 21:19 GMT <snip>
>. I suspect that the two year figure is somewhat arbitrary and recommended to fit neatly into his study rather than >any particular benefit to me. <snip> I've just come to the grim awareness that any Clinical Trial Study just re-classifies the patient as a Lab-Rat. I also doubt the "Randomisation" of which "Arm" of the study is assigned to you. Your pre-qualification Data are fed into a so-called "Artificial Intelligence" program in some remote computer and your "Randomisation Arm is spat out". IMHO, the computer is loaded with past data fed in by Humans, so it's just like sifting dirt thru a sieve in your back garden. You don't need to be a Rocket Scientist to know what your Treatment Regime will be, if you've already made an assessment of your condition prior to entering a Clinical Trial. I must admit I welcomed being in one as it was the only option remaining for me and also was free (to a large degree).
So where am I going with this Rant?
I went into the trial with fairly bad Osteo-Arthritis in both feet, ankles and R knee. This has now been exacerbated by ADT to the point where I'm now on fairly heavy pain-killers, but now my good L knee is also painful and I'm having difficulty getting DOWN a small flight of stairs without handrails.
I've completed 23 fractions of EBRT and now have Cellulitis in my R lower leg. The Govt. Podiatrist and my local GP have suggested this could be a SE of the Radiation AND the ADT lowering my resistance. The GP is holding it at bay with oral Anti-Biotics, but it's slow to recede.
I'm up for 3 fractions of HDRB come July 11-14 and scheduled for 3 more Lucrin, (similar to Zoladex), Injections finishing December 2005.
I've asked about BMD tests and have been told by the Rad Onc and the GP that they are only for patients presenting with signs of Osteoporosis, (not Osteoarthritis), prior to Treatment, plus any bone supplements would not relieve pain and would only serve to strengthen and rebuild bone lost by resorption thru ADT, plus would take 18 mths to work.
So in summary, if you're in a Clinical Trial, you're locked into the hand of cards that's dealt to you, (like a train on tracks), until the Trial is completed. They don't really give a sh.t about your SE's so long as you complete the Trial and your Data are fed into the computer for the next lot of Lab-Rats.
If you Opt out of the Lucrin/Zoladex without completing the prescribed period in the Trial, any futher Treatment/Monitoring/Salvage Therapy Procedures become Billable at Full Cost, which may be offset by Insurance or Medicare, but you would possibly need a Lawyer to recover any Monies as you would've been blacklisted for Opting out of the Trial.
Have a nice day (it may well be your last!)
-- Reader to complete... -- Please reply to this ng as my email adress is fake:
-- Regards
-- CC
Alan Meyer - 28 May 2005 00:47 GMT > ... > If you Opt out of the Lucrin/Zoladex without completing the prescribed [quoted text clipped - 3 lines] > any Monies as you would've been blacklisted for Opting out of the > Trial. Clarence,
I don't know what the legal situation is on all of this, and it might be different in Australia and the U.S., but it seems to me that morally, the doctors have some obligation to you.
You fulfilled your part of the bargain so far. You took the drugs they gave you. You accepted the protocol. Now you're being hit with side effects that they didn't tell you about and for which there isn't much doubt that their treatment is responsible.
My impression of the doctors who ran my clinical trial was that they really did care about the patients. They weren't just in it for the glory of scientific discovery and publishing.
Talk to your doctor about the problem. Maybe he'll be willing to continue the treatment without more injections. I presume he already has the funds for the treatment, and he's already spent half of them on you. And it's not like he'll get no information at all from your experience.
I've also had some arthritic effects from Lupron. They started after the Lupron wore off, but I believe the Lupron was the instigator. For me, the only thing that's helped, and it's helped a great deal, is exercise. I know you're in pain, but keep trying to move those joints. Maintain flexibility. Don't let them freeze up on you.
Some people have gotten great benefit from swimming. In the water you can move all of your joints without putting a lot of weight on them. Maybe it will help.
Best of luck.
Alan
Marshall Schuon - 28 May 2005 06:19 GMT >Thanks to Marshall Schuon for sharing your decision to quit Zoladex. Our >paths are very similar. I too received my first injection February 2004. My [quoted text clipped - 9 lines] >is enough to make me feel better even though the effects wouldn't start >wearing off for a few months. <snip>
>My hiatus from the group for the last 6 months probably was one of the side >affects. I've been sitting at my computer since 1:00 am - I've been a lousy >sleeper the last couple of years. One of the SE's? And was drawn back to the >NG. Maybe Divine Intervention that drew me to Marshall's post? > >Larry _______
Hi Larry, So glad you found my comments and that they were helpful. I'll be interested to see (an understatement!!) how long it takes the SE's to wear off, and I'll keep everybody posted.
Marshall
Larry - 28 May 2005 15:30 GMT Marshall, I'd been thinking about this for a long time. I came very close to not getting the injection last time but felt I had to go with my doctor's recommendation. It was a lot of pressure (self imposed). You actually did what I was wanting to do and I got a lot of strength from that. A little reassurance that I got from your post is all I need. Absolutely I'll keep you posted. Looking forward to see how you do. I would also be anxious to hear from others on how long it took after they stopped taking hormone therapy to notice a reduction of SE's Thanks, Larry
> Hi Larry, So glad you found my comments and that they were helpful. > I'll be interested to see (an understatement!!) how long it takes the > SE's to wear off, and I'll keep everybody posted. > > Marshall Tom Cular - 31 May 2005 10:47 GMT Larry,
I got my last 4 month Lupron shot in Oct. 04 and the first post treatment PSA in April 05 because my Dr. felt there was still residual effects of the drug for a couple of months following the planned life of the dosage. I experienced a few minor hot flashes until this month and definitly feel more energetic. The libido is returning and that's a good sign. From my experience, it seems to take 3 to 4 months from when the last shot would have run it's course to begin to loose the SEs.
Tom
> Marshall, > I'd been thinking about this for a long time. I came very close to not [quoted text clipped - 14 lines] > > > > Marshall Larry - 31 May 2005 16:14 GMT Hi Tom, Thanks for sharing this information. It's very useful. What was the result of your April PSA test? Larry
> Larry, > [quoted text clipped - 7 lines] > > Tom Tom Cular - 01 Jun 2005 10:43 GMT Larry,
It was <.1, but that still may have been influenced by the Lupron. I'm scheduled for another test in Aug.
Tom
> Hi Tom, > Thanks for sharing this information. It's very useful. What was the result [quoted text clipped - 14 lines] > > > > Tom kh - 01 Jun 2005 01:02 GMT > I got my last 4 month Lupron shot in Oct. 04 and the first post treatment > PSA in April 05 because my Dr. felt there was still residual effects of the [quoted text clipped - 3 lines] > experience, it seems to take 3 to 4 months from when the last shot would > have run it's course to begin to loose the SEs. That's my experience too. My "declined" shot of Lupron was supposed to be in January 2005. I was still a Lupron mess in February and March.
In April, I was on the way back, feeling stronger and clearer but not there yet. Libido was, ah, starting to stir; 50 mg of Vitamin-V was getting the motor started.
I was working a 10-11 hour day in April and have been increasing this each week. I'm counting fixing my home computers and doing home repairs as work.
During the cancer treatment, I let a lot of things slip. I had to, I didn't have the focus or the strength. How important is painting the back room when you are fighting cancer and getting up 2, 3 times a night to pee?
Since March, I've done home repairs, nothing major, just replaced the kitchen faucet and garbage disposal. Typical homeowner stuff but stuff I flat did not have the time or strength for.
In April, I did more work, both on the paying job, on a contract part-time job, and around the house, than I did in two months while on Lupron.
Still not there yet though. I'm exhausted by the weekend.
Each week, though, I'm able to do more.
|
|
|