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Old 01-21-2008, 02:38 PM   #1
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Hormone Therapy (Chemical Castration) Side Effects...

THREAD TITLE CORRECTION...
"Hormone Therapy (Chemical Castration) Side Effects..."

I have a relative in his early 50's who chose hormonal therapy as his treatment for prostate cancer. He was always pretty secretive about his situation so I did not know he was diagnosed until he approached me soon after my diagnosis and he told me that he felt like he needed to shared his personal experiences with me as I was in the process of making a treatment choice. Not being familiar with this treatment other than the name he gave it, "Chemical Castration", I asked him how it works. He shared with me that the primary strategy of hormonal therapy is to decrease the production of testosterone by the testes or block the actions that testosterone has on the prostate cells. I was shocked when he mentioned, "Hormonal therapy cannot cure prostate cancer. Instead, it slows the cancer's growth and reduces the size of the tumor(s)."

He continued to tell me that his side effects were pretty significant and included decreased sexual desire and ability to have erections, hot flashes, fatigue, and decreased muscle strength. Some other serious side effects he and his doctor have noticed since being on this therapy for a while include anemia, altered lipid levels, decreased cognitive function, and decreased bone mineral density.

Needless to say, after hearing his story, my treatment decision became much easier.

So far, from what he shares with me, his numbers and his prognosis are very encouraging but he does admit that living with the side effects is sometimes extremely difficult. He says he takes a lot of meds, both prescription and OTC, to counteract these side effects and he says he finds himself popping pills almost hourly for relief.

I'd be very interested in hearing from those who are having similar first hand experiences with hormone therapy and can share some of the ways they counteract the side effects.

Thanks!
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Last edited by able5; 01-21-2008 at 07:45 PM. Reason: grammar & content

 
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Old 01-22-2008, 07:28 PM   #2
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Re: Hormone Therapy (Medical Castration) Side Effects...

I tried interspersing answers in green earlier and it seemed to work, so here goes again.

Quote:
Originally Posted by able5 View Post
THREAD TITLE CORRECTION...
"Hormone Therapy (Chemical Castration) Side Effects..."

I have a relative in his early 50's who chose hormonal therapy as his treatment for prostate cancer. He was always pretty secretive about his situation so I did not know he was diagnosed until he approached me soon after my diagnosis and he told me that he felt like he needed to shared his personal experiences with me as I was in the process of making a treatment choice. Not being familiar with this treatment other than the name he gave it, "Chemical Castration", I asked him how it works.

That is definitely one of the names for the therapy, and it describes the main objective: stopping production of testosterone, which of course fuels the cancer, from the testes. I don't care for that name because it's misleading and scary. You still retain all your equipment, and the side effects are reversible if you are on intermittent therapy, provided the combination of age of 70 or over and time on therapy longer than two years, or bad luck in rare cases, makes it impossible to produce testosterone again even when the medication is stopped. ("Two years" is not an absolute boundary, but the risk of not being able to recover increases the longer blockade is continued beyond two years.) These days "orchiectomy" - actual removal of the insides of the testicles, is not done much. That, of course, is actual castration. It is the fastest way to stop production of testosterone, and that is sometimes crucial when the patient is in bad pain because of growing spinal metastases; the patient normally experiences rapid relief as the metastases cease growing and begin to shrink. It is also the least expensive form of hormonal blockade. If the case permits at some point after orchiectomy, some men may be able to regain testosterone with patches of medication.

He shared with me that the primary strategy of hormonal therapy is to decrease the production of testosterone by the testes or block the actions that testosterone has on the prostate cells.

That's correct but incomplete, as the adrenal glands are normally in a kind of balance with the testes, and can also produce testosterone. Normally they contribute only about 5%, but when the brain senses a shortage of testosterone, the adrenal glands can ramp up production, in some men contributing up to 40% of the former normal amount. That can wreck a hormonal blockade program and is the reason many of us take "antiandrogen" drugs like Casodex, flutamide, or Nilutamide, with other options outside the US. The latter act by blocking the action of testosterone or dihydrotestosterone on the androgen receptors of the prostate cells. Another class of drugs, the 5-alpha reductase inhibitors finasteride (formerly Proscar) or Avodart, block the conversion of any remaining testosterone to DHT, which is a far more potent fuel for the cancer. The 5-ARI drugs have some additional beneficial effects.

I was shocked when he mentioned, "Hormonal therapy cannot cure prostate cancer. Instead, it slows the cancer's growth and reduces the size of the tumor(s)."

For the most part that is true: while a few actual cures seem to have happened, mostly it is a method of controlling the cancer, in many cases for many years if not indefinitely. It usually does more than slow the cancer's growth. Normally, it will reduce the cancer ("reduces the size"). For instance, my urologist (I finally found a very good one) has done DREs while I am well into a course of triple blockade and has found my formerly somewhat enlarged, rock hard prostate to be flat and soft. Blockade typically will turn off virtually all production of PSA in the first few months; it will then kill many of the cancer cells in the months through months nine to about twelve, it is thought; it will also apparently put virtually all or all of the remaining cancer cells into a dormant state, but, for most of us, unfortunately, won't kill them.

He continued to tell me that his side effects were pretty significant and included decreased sexual desire

That's very common, though degrees vary, a lucky 10% gets the full benefit but desire is unaffected, and countermeasures can help to a degree for many of us.

and ability to have erections,

That is also very common, though often some ability remains, and countermeasures can help quite a bit.

hot flashes,

Again, this is very common, though degrees vary. Older men tend to have an easier time with most of the side effects, though some do not. The fact that your relative is in his 50s - relatively young, could be why he is experiencing a heavier burden from side effects. Experience in one practice described on page 153 in "A Primer on Prostate Cancer" was that 23% had fairly mild flashes while 25% had bothersome flashes, with some requiring medication. That totals 48%, with 52% not experiencing flashes worth mentioning. There are a number of countermeasures.

fatigue, and decreased muscle strength.

I never experienced fatigue due to hormonal blockade except fatigue resulting from interrupted sleep during the early months, which I could take care of with a nap. The Primer reports mild weakness in 51% of patients, with really bothersome weakness in an additional 5%. Typically, blockade patients lose some muscle, especially upper body muscle. However, aerobic and strength exercise can fully take care of this for most of us. I did not noticeably lose lower body muscle, but did lose some upper body muscle during the first round of therapy. I did a lot of fast walking but little for my upper body. Dr. Mark Scholz and others have emphasized that strength exercise makes it possible to even build muscle while on blockade, even with virtually no testosterone. I thought I'd give it a try, and I actually succeeded in building upper body strength during my last blockade cycle. That made me a believer. My impression is that exercise also eliminates the fatigue problem for most of us. Dr. Scholz has similar recommendations for another muscle of great interest to us, and that apparently helps a lot with some of the issues mentioned above. Exercise also helps prevent or counter depression. Exercise is clearly a key countermeasure!

Some other serious side effects he and his doctor have noticed since being on this therapy for a while include anemia,

I've never had an anemia problem, but a fair percentage of us do. The Primer puts mild anemia at 32% and bothersome anemia, perhaps enough to require medication, at an additional 13%; thus, 55% of us don't experience anemia. There are excellent countermeasures, such as drugs like Procrit, but use is a judgment call as there are some side effects/complications issues.

altered lipid levels,

Also fairly common, with a total of 57% experiencing "hypercholesterolemia" according to the Primer, 18% mild and an added 34% significant enough for medication. We now know that statin drugs help prevent well advanced, lethal prostate cancer, especially when used for at least three years, so taking statins is a natural here, in my non-medically trained understanding of the issue and research. Both diet and exercise also can make a big difference with lipid levels.

decreased cognitive function,

The Primer gives a total of just 17% for this one, with 14% in the bothersome/requiring medication column. I think that may be low. My wife would certainly agree. (Of course, she's wrong there!

and decreased bone mineral density.

This is another common side effect, so common that some doctors automatically start their patients on a bisphosphonate drug coupled with calcium and vitamin D3 without even testing for bone density. Fortunately, the bisphosphonates are, in my opinion, wonder drugs, and they basically take care of this issue. Without bisphosphonates, hormonal blockade would be a far less effective option. Strength exercises also are highy recommended, particularly those for the lower back.

Needless to say, after hearing his story, my treatment decision became much easier.

That's pretty understandable, especially if you have a low or intermediate risk case and have a decent shot at a cure. However, blockade does not cause incontinence, and for those of us on intermittent or one cycle blockade, the side effects are fully and fairly quickly reversible once we go off therapy. Some low-risk men have chosen triple hormonal blockade with finasteride or Avodart maintenance as their only therapy and have achieved outstanding control of their cancer and an excellent quality of life. However, data on this is limited to just a few practices, and it is obviously investigational and not a standard of care.

So far, from what he shares with me, his numbers and his prognosis are very encouraging but he does admit that living with the side effects is sometimes extremely difficult.

He may not know of the many countermeasures available for the side effects. On the other hand, some men have great difficulty finding relief. He may do much better if he can go off-therapy for a while, provided he hasn't stayed on blockade so long that the body can no longer resume production of testosterone.

He says he takes a lot of meds, both prescription and OTC, to counteract these side effects and he says he finds himself popping pills almost hourly for relief.

I've got one of those four times a day pill organizers. Blockade is a hands-on therapy. I'm sometimes envious of my friends who had seed therapy and were in and out in a day and have had few side effects.

I'd be very interested in hearing from those who are having similar first hand experiences with hormone therapy and can share some of the ways they counteract the side effects.

I would be happy to go into more detail, but this is already quite long. You could focus on specific effects in replies. The Prostate Cancer Research Institute has a newsletter called PCRI Insights that is available in printed copy and online, and the latest issue has an excellent article on side effecs and how to counter them.

Thanks!
Take care, and thanks for giving me a chance to speak from one of my favorite soap boxes,

Jim

 
Old 01-22-2008, 09:01 PM   #3
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Re: Hormone Therapy (Medical Castration) Side Effects...

Hello -- I am responding to your post as the daughter of a 78 yr. old man that has been on hormone replacement therapy for over 11 years. He takes Lupron injections and Casodex and his psa has remained less than 0 since therapy began. The side effects you mentioned all exist for my father and the lack of energy and bone pain are definitely a problem. Hot flashes, cognitive ability and loss of muscle are also noticeable. Surgery was not an option, since his cancer was stage 4 when discovered and the cancer was outside of the prostate.

He has thought about going off of the Lupron for a short time period to see if the side effects would go away and to have a better quality of life, as his doctor has said that was an option. However, as of yet, he has not done so.
Coincidentally, I had a conversation with him today about that very subject.
He's a very strongwilled man, and has proven his doctors wrong -- as they first told him he probably would only live 2 yrs. He had continued to work part-time until the end of December when he finally chose to retire.

He is a perfect example of someone living with cancer and dealing with it on a daily basis. A positive attitude is essential.

 
Old 01-23-2008, 05:01 AM   #4
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Re: Hormone Therapy (Medical Castration) Side Effects...

Quote:
Originally Posted by IADT3since2000 View Post
I tried interspersing answers in green earlier and it seemed to work, so here goes again.



Take care, and thanks for giving me a chance to speak from one of my favorite soap boxes,

Jim
Thanks for your post...

I have asked my "relative" (brother-in-law) to visit this forum but he does not own a computer and relies on me to print out these posts.

The information you supply will help him greatly to better understand his journey and to know his experience is shared by others.

Although he's currently winning the physical battle against his disease, his mental attitude is in need of support.

Thanks again!
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Old 01-23-2008, 05:04 AM   #5
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Re: Hormone Therapy (Medical Castration) Side Effects...

Quote:
Originally Posted by Ruthy View Post
Hello -- I am responding to your post as the daughter of a 78 yr. old man that has been on hormone replacement therapy for over 11 years. He takes Lupron injections and Casodex and his psa has remained less than 0 since therapy began. The side effects you mentioned all exist for my father and the lack of energy and bone pain are definitely a problem. Hot flashes, cognitive ability and loss of muscle are also noticeable. Surgery was not an option, since his cancer was stage 4 when discovered and the cancer was outside of the prostate.

He has thought about going off of the Lupron for a short time period to see if the side effects would go away and to have a better quality of life, as his doctor has said that was an option. However, as of yet, he has not done so.
Coincidentally, I had a conversation with him today about that very subject.
He's a very strongwilled man, and has proven his doctors wrong -- as they first told him he probably would only live 2 yrs. He had continued to work part-time until the end of December when he finally chose to retire.

He is a perfect example of someone living with cancer and dealing with it on a daily basis. A positive attitude is essential.
I appreciate your post. I will pass your words along to my brother-in-law.
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Old 01-23-2008, 12:42 PM   #6
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Re: Hormone Therapy (Medical Castration) Side Effects...

[QUOTE=Ruthy;3405612]Hello -- I am responding to your post as the daughter of a 78 yr. old man that has been on hormone replacement therapy for over 11 years. He takes Lupron injections and Casodex and his psa has remained less than 0 since therapy began. The side effects you mentioned all exist for my father and the lack of energy and bone pain are definitely a problem. Hot flashes, cognitive ability and loss of muscle are also noticeable. ...
He has thought about going off of the Lupron for a short time period to see if the side effects would go away and to have a better quality of life, as his doctor has said that was an option. However, as of yet, he has not done so.
...He... has proven his doctors wrong -- as they first told him he probably would only live 2 yrs. He had continued to work part-time until the end of December when he finally chose to retire.... QUOTE]

Ruthy,

Thanks for passing on the inspiring story of your dad! It's wonderful to hear that he is doing well at 11 years having started with stage 4 disease and a two year prognosis. I love these stories about long survival for those of us who had a very pessimistic prognosis.

I don't remember whether you mentioned in your other post about his being on a bisphosphonate drug? Has his bone density been evaluated? What I'm thinking is that due to both prostate cancer and eleven years on Lupron, he may have lost enough bone density to account for the pain. Going on a bisphosphonate might help (with associated supplementation with calcium and vitamin D3). (On the other hand, a few patients have increased pain when they go on a bisphosphonate. Perhaps it's a case of too much of a good thing for a body no longer used to it.) At his age, a quantitative CT scan (qCT) for bone density could be better than a DEXA scan because of the likelihood of some arthritis. The book "A Primer on Prostate Cancer -- The Empowered Patient's Guide," talks about differences between the scans.

Is he exercising, or getting a lot of physical activity? Exercise can go a long way toward overcoming lack of energy and loss of muscle, perhaps even helping with cognitive function. I hope he still feels well enough to try exercising. If he isn't exercising, the keys are to start with just a little and increase gradually, and a capable doctor's or nurse's supervision would probably be a good idea. Personally, I believe that drinking plenty of water helps. I know that glucosamine helps me, and it is safe for prostate cancer patients, unlike the glucosamine/chondroitin combination, which is dangerous for us. (My knees creaked before I started taking glucosamine and stopped creaking after I started. I never have any trouble with stairs at age 64. In fact I walked up eight flights to get to my doctor's office this morning. I think that both the water and the glucosamine help with that.)

From hearing stories about many cases in the support group and elsewhere, I think he would be pretty safe to stop Lupron now. Monitoring with PSA tests will insure that his PSA doesn't rise far enough for the cancer to get out of hand. At the least, stopping Lupron would save the expense of the shots (my copay alone is around $200 per shot - thank goodness for insurance ) as well as the soreness after the shot. At his age and years on Lupron continuously, my impression are the odds are against his recovering testosterone, which would be the key to a better quality of life. An older relative of mine just made the same choice, going off Lupron after many years following metastatic disease after an RP. On the other hand, not recovering testosterone is the equivalent of free Lupron shots.

I've heard of low-risk men (with no signs of detectable metastases) safely (with monitoring of course) going on testosterone patches when they cannot recover testosterone after stoping Lupron or similar drugs, but the same doctors who have reported that in their practices have said they would not do it for a man who had had detectable metastatic disease. I haven't heard of anyone loosening up that guideline, but I'll bet that some previously metastatic patients have risked it, and we may sometime hear reports of how they have done. Who knows, after many years of keeping a virtually undetectable PSA, it may someday prove safe for some once metastatic patients to go on testosterone supplementation. Maybe that has already been reported, but I haven't heard of it.

Jim

 
Old 01-25-2008, 01:02 PM   #7
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Re: Hormone Therapy (Medical Castration) Side Effects...

Thank you for your interest and response. He also subscribes to PCRI's newsletter and saw the side effect article. His bone density test a few months ago must have been ok, his doc did not prescribe any new scripts for biophosphonates, and he does have regular PSA checks. He has them graphed on a chart in his home office so he can remember when to go if the doc fails to set up an appointment. Calcium + D is one of the many vitamins he takes and he is really pretty active for his age, so he gets some exercise. He has an organic vegetable garden and spends alot of time working in the yard when weather allows. Lately it's been cold and he can't get outside, and I think that sometimes intensifies pain, or at least dwelling on pain. He only takes arthritis strength Tylenol for pain and doesn't abuse it. He's just tough. After hip replacement three years ago, he only took one pain pill and went home a week earlier than physical therapy usually allows -- he was in good shape. He read your last post and is still thinking about stopping Lupron. I think he is just afraid, that possibly something might happen, since his psa is still low --- just a little apprehensive.
Thank you again for your input. I assume you are a well-informed prostate cancer patient. Good health to you.

 
Old 01-25-2008, 03:07 PM   #8
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Re: Hormone Therapy (Medical Castration) Side Effects...

Quote:
Originally Posted by Ruthy View Post
... He read your last post and is still thinking about stopping Lupron. I think he is just afraid, that possibly something might happen, since his psa is still low --- just a little apprehensive.
Thank you again for your input. I assume you are a well-informed prostate cancer patient. Good health to you.
Ruthy,

Your dad sounds like an interesting guy and indeed tough. I'm glad he gets the newsletter. The doctors closely associated with PCRI are some of my heroes, and I've learned so much from them. I've attended four of the national conventions that PCRI has been a big part of and the driving force behind two of them. PCRI and these doctors have helped me become a very well informed patient (but with no enrolled medical education).

It's understandable that anyone would be concerned about stopping blockade after achieving excellent cancer control, especially with disease that was metastatic at least in the beginning, but it may be reassuring to your dad to consider that he can track his PSA with an ultrasensitive test. The one I usually am tested with is accurate to <0.01 ng/ml. If his PSA starts rising and makes him worry, then he could restart blockade while the cancer is still extremely small and knock it back down again. My impression as a layman listening to experts is that resumed blockade would be highly likely to be successful, but this is something your dad could discuss with the doctors.

If it were me and I had not been using an ultrasensitive test before now, I would do that once before stopping to get a baseline for comparison. Ultrasensitive tests have different lower limits. Mine is great (Immulite Third Generation), but I have to have the sample shipped out of state to a lab that can handle it. An alternative test is reliable to a lower limit of <0.04 and is available in a building adjacent to my doctor's office, so I can get results the next day.

My relative who recently stopped was metastatic years ago, but he and his doctor believe that the metastasis has disappeared. He's going to keep a close eye on his PSA.

Since your dad still has his prostate, if he recovers testosterone and it is able to kickstart the regrowth of healthy prostate cells, then his PSA will go up due mainly to those cells rather than mainly due to cancer. Of course, there could be some cancer too. Fortunately, Drs. Leibowitz and Tucker from the Burbank, CA area have explored what happens to men with unradiated, intact prostates who stop triple blockade but continue finasteride maintenance. They found that many men had their PSAs rise to around 3 to 4 and then level off for years. Others, like me, had PSAs that kept rising, signalling the need for more blockade therapy, and all of these men had at least one high-risk case feature. For a man not on finasteride, I'm guessing as a layman that the equivalent range for the PSA rise could be 6 to 8, but that would make me nervous. This is where it would help to have a doctor who is expert in blockade. Dr. Labrie's papers may describe what kind of rising pattern he observed in men who had had only blockade and not surgery or radiation.

You can get free abstracts of Dr. Labries papers by going to [url]www.pubmed.gov[/url]. I just did a search to locate one paper that could be very helpful using this string and got 2 hits: " labrie f [au] AND prostate cancer AND cure AND 2004 [dp] ". The paper I was thinking of actually has an icon of a page with a green header, meaning that you can click on the icon and access the complete paper for free. I took a look at it, and most of his results apply to men with localized cancer. I'm wondering if he has done the same research on cancer control after stopping blockade for men who were metastatic. If so, any report would not have been earlier than 2004 since he did not address that in the 2004 paper. You can adjust the string to see other papers he has written, but there were over 100 hits when I used just his name plus activation of the limits feature for papers only on humans and with abstracts.

Take care and good hunting,

Jim

 
Old 01-25-2008, 05:41 PM   #9
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Re: Hormone Therapy (Medical Castration) Side Effects...

Thank you for the information on where to look for the Labrie papers; I'll have to see what I can find.

I think I failed to mention that my dad took a full round of radiation (as much as was allowed) when he was first diagnosed since his psa was extremely high when diagnosed. I'd have to check with him, but if I'm not mistaken his psa at diagnosis time was over 100. I was with him when he first got the news and I vividly remember the doctor showing us the bone scan xrays showing the dark spots entailing his spine and several other hot spots -- it was scarey.

Thank you for your advice.

 
Old 01-26-2008, 07:38 AM   #10
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Re: Hormone Therapy (Medical Castration) Side Effects...

Quote:
Originally Posted by Ruthy View Post
Thank you for the information on where to look for the Labrie papers; I'll have to see what I can find.

I think I failed to mention that my dad took a full round of radiation (as much as was allowed) when he was first diagnosed since his psa was extremely high when diagnosed. I'd have to check with him, but if I'm not mistaken his psa at diagnosis time was over 100. I was with him when he first got the news and I vividly remember the doctor showing us the bone scan xrays showing the dark spots entailing his spine and several other hot spots -- it was scarey.

Thank you for your advice.
Hi Ruthy,

Your dad's story just gets more impressive! How wonderfully well he has done, and what an inspiration to others!

Even though your dad's PSA is great, and that should be an excellent indicator that the cancer is minimal and dormant, has he thought of getting a bone scan before making his decision, just to make sure? There's a special PET scan using the isotope flourine 18-deoxyglucose, which is suposed to be superior to a conventional bone scan. On the other hand, it would probably be better to have a scan that could be closely compared with the earlier scan. Possibly both could be done. According to the Primer, page 59, "... PET scans, therefore, not only can locate tumors in the above manner but also can provide information on the metabolic activity of the cancer. This allows for a 'live look' at how tumors are responding to treatment, rather than providing a static image, as do most other imaging techniques."

On the other hand, I know that some scans, like the ProstaScint scan, do not seem to work very well when PSA is extremely low. That's probably because there is so little cancer to detect, or because what there is is dormant. I doubt the latter because the ProstaScint scan uses the anti-prostate specific membrane antibody (anti-PSMA) to seek out any prostate cancer cells, and I think that would work even with low levels or dormant cancer; however, there might be so little that the camera detector cannot pick out broadcasts from the radiation marker linked to the antibody (and therefore the cancer) from the "noise".

Even though your dad's prostate has been well radiated, he still has one, and that might lead to some production of PSA by healthy cells once blockade is stopped, even though your dad is 78 and has been on blockade for 11 years. I'll bet the doctors who are experts in blockade would know the answer, but I do not.

Take care,

Jim

 
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