New on this forum, need help for my Dad please

Hello everybody,

My dad is in his 70s and in 2015 he had 6 weeks of daily radiation. He then had regular Prostap or Zoladex injections. The last injection was in October 2016. He's been going to his oncologist every few months to have blood tests. His PSA has been around 0.1 or 0 going back as far as July 2015. Testosterone is 7 nmol/L (9 -30). I'm looking at his results to confirm this. I had his thyroid tested and it shows low thyroid aswell as pituitary TSH function. So the pituitary gland isn't even bothering to push the thyroid gland to make the necessary hormones. I'm a thyroid patient myself.

The problem is he still suffers from hot flushes, he feels weak, suffers from shortness of breath. A scan shows that he his non-alcoholic fatty liver. He cannot get to sleep whereas in the past he would be out like a light within minutes of going to bed. He's also gained weight around his tummy. This isn't surprising given his low testosterone.

My question is how can you recover post androgen deprivation therapy? Is it possible to safely raise his testosterone and give him some of his life back? I feel so bad for him. Please help. Thanks.

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  • Let me first give the standard disclaimer. I'm not a doctor. My opinion is that of a layman who has done some reading about prostate cancer and followed support groups like this for many years, but I have no training and am not qualified to give medical advice. But, having said that, I'll tell you what I think. In any case, raising your Dad's testosterone level will require the help of a doctor - so he'll need to get expert advice.

    Assuming that your father was given ADT as an adjuvant (i.e., supplemental) therapy to his radiation, and not because he has metastatic cancer that was not curable by radiation, then I think the answer is, yes, it is probably possible to safely raise his testosterone level.

    The value of ADT as an adjuvant therapy to radiation is greatest during and immediately after the radiation therapy. The first few months of ADT has the biggest positive effect on survival. The next few months adds to that, but not as much, and so on. I have read that the maximum survival benefit comes from 2-3 years of ADT, but most of that benefit comes in the first 6 months.

    If your Dad's current oncologist is uncomfortable raising his testosterone level, I'd get a second opinion. This is not a simple problem. Quite a few oncologists will not, under any circumstances, prescribe testosterone for a person who has ever been diagnosed with PCa. If you deal with an oncologist like that, you don't need to see him or give him any details, his answer is always a guaranteed NO! If you can find that out before visiting him your Dad can save the time and money by seeing someone else instead. Opinions are changing and there are more and more oncologists who are using T therapy.

    It's possible that, if no more ADT is administered, the problem will soon resolve itself. The actual effects of ADT almost always last longer than the nominal period listed in the prescription. If he got a "90 day" or "120 day" injection, the effect may well last for 6 or more months before T levels start to rise. However the older a man is and the longer he's been on ADT, the longer it takes, so the problem may not resolve itself any time soon and T supplementation may be desirable.

    In the meantime, I recommend that your Dad begin a program of diet and exercise. The exercise can be as simple as walking. He may only be able to do a few minutes at a time, but he should keep trying to extend the time. Exercise will have many positive effects. I think it will build back some muscle, cut some weight (if done with dieting), add to daily energy, and help him sleep. I've known men on ADT for whom walking several miles a day did wonders for their energy levels and their outlooks. I think diet and exercise are useful for anyone, with or without ADT, and get even more important as we get older.

    I'm 70 years old and, although I'm not on ADT, I try to workout for at least an hour every day. I use a stationary bike or an elliptical trainer and also do some pushups, situps and light weight lifting. A stationary bike is cheap, doesn't take up much room, can be used in any weather, can be set for easier or harder workouts, and one can watch TV or listen to music while using it. I have a book stand on mine and I read books while I'm spinning the wheel. I have been on ADT in the past and exercise helped me a lot to keep my weight down and my energy level and spirits up.

    Best of luck.

    Alan

  • Alan, seven months since my six month eligard shot and I am barely sensing any increase in T so I think you are correct in pointing out that these ADT shots tend to last longer than advertised. I'll be getting my T and PSA checked in two months. Both were very low two months ago.

  • My last Lupron injection was supposed to be for 90 days (3 months). At four months my T was still at castrate level. At 5-1/2 months I first began to feel some return of libido. After six months my T level was barely at the low normal level. I was young (58) at the time and had only had two Lupron injections, so I probably did better than most older men and/or men who have been on ADT for a long time.

    If you're sensing any small increase at all, that's a very good sign. Hopefully, in two months you'll feel a little closer to your old self.

    Alan

  • Be very careful doing anything!!

    I had radiation and ADT treatments. My ADT treatments ended 1 year after the completion of the radiation, in Sept. 2015. I had low testosterone and negligible PSA and felt well. A slight rise in my PSA in July 2016 led to me going back on ADT. By Nov. 2016, I found that the cancer had spread to my bones, lungs and liver. Well now I am on chemotherapy and ADT. The negative effects of ADT that you describe are nothing compared to what happens if the disease becomes metastatic.

  • Egg,

    was the prostate cancer metastasis because you had a spread of prostate cancer PSA negative cells that was not reflected in your slight rise in PSA. When I was at The Mayo Clinic they showed me scans of guys who had negligible PSA and who were loaded with Prostate Cancer

    Gus

  • Biopsy on the PC which spread to my liver and the PC in my prostate show similar results that the cells do produce very low levels of PSA probably because they are very deformed. My PSA which was 0.12 ng/ml in March rose to 1.59 in July indicating something was happening. A whole body MRI saw PC in the prostate and neighboring bone which we were trying to control using ADT. In October, I started not feeling well which got worse. My PSA reached 10.25 in November. I had a CT scan then which showed that the PC had spread to liver, lungs and more bone. PSA reached 19.97 in December when I started Chemotherapy along with ADT. PSA peaked at 24.77 in January and has fallen back to 4.59 in March. The PC apparently spread through a lymph node sometime last fall and spread to other organs of the body. My oncologist believes that the increase in the PSA level is due to the greater number of cancer cells than any change in the per cell output of the cells.

    I believe my cancer is similar to the Mayo Clinic scans you are referring to in your post.

  • Hi. I, too, am not a doctor. But from all what I have read and heard, I would be careful when it comes to raising testosterone levels. After all, they try to slow down the production of testosterone in men with prostate cancer because it has shown to have an effect on the tumor groth. In other words, the lower the testosterone, the more likely it is that the cancer grows very slowly. I am not sure, though, if that is true or if it is a good way. To me it seems rediculous to take this very important hormone awayy from men, sometimes for years, be cause it has many devastating effects such as weakening the bones, general weakness and exhaustion... I think your dad has to discuss everything carefully with his oncologist and get a second or even third opinion.

  • First of all I'd like to thank everybody who has responded to this post. I've learnt so much reading your responses. AlanMeyer thank you for telling me about the term metastatic cancer. I've just double checked and my Dad had his prostate removed over 10 years ago. Most recently in 2015 they found cancer in the prostate bed. I am assuming that is what metastatic cancer is? By ADT I'm assuming you mean Androgen Deprivation Therapy. I was assuming that the Prostap and Zoladex injections are exactly that. I will ask my Dad to check how long the effects of the injections are meant to last in the body when he has his next quarterly oncologist appointment.

    eggraj8 thank you for sharing your experience. Do you know why your PSA started to rise again? Was it simply the return of the cancer? I hope you start to feel well again and quickly recover.

    MelaniePaul thank you for writing. Now that I think about it, his Vitamin D levels have been dire and this is probably all related like you say. He was given a Vitamin D injection about 2 years ago. The smallest fall last autumn resulted in him breaking one of his ribs. We were on the train and he lost his balance and fell on the armrest. It broke my heart I felt so sorry for him. I've got him taking 5000iu of Vitamin D3 a day with Vitamin K2-MK7 which directs calcium to bones rather than arteries. He's also taking Magnesium Citrate and Zinc. I've asked him to have his iron, B12 and Folate checked. I'm hoping this will help somewhat but so far he's still not feeling that well.

  • What you have described about your dad is called a prostate cancer reoccurrence. This means that there are prostate cancer cells outside of where the prostate gland had been located. In situations like this one can never be sure that there isn't other Prostate Cancer Cells in the body, just not detectable at this time.

    Therefore, it would not be advisable for you to have him receive supplementation with testosterone.

    Different men to recover after hormone therapy has been stopped at different rates. Some men will never recover after hormone therapy. Statistically there is a relationship between a man age and whether or not they recover and how quickly they recover.

    joel

  • JoelT thank you very much for explaining this to me.

  • i have a detailed description on my response to Gusgold above. Basically, my cancer was waiting to start growing again and it did. PSA rise seems to have indicated that the cancer cells which were dormant during the initial ADT were becoming active 9 months after I had quit ADT.

  • See the blog developed by Chuck Maack of Us Too for a great reference tool by a PCa survivor.

    theprostateadvocate.com/obs...

    Clint

  • I had not heard of Prostap before. There are many posts on its side-effects. I see "trouble going to sleep" among them, and here is a list of postings:

    community.prostatecanceruk....

    I agree with what I think is a general comment - continue looking for a doctor who can both have a reasonable conjecture as to what is going on, and is allowed to make intelligent changes.

  • Is it also possible to have a constant headache? I know I feel awful if I don't sleep for a few days so that could be a possible reason but I honestly don't know why my Dad's head constantly hurts.

  • When possible side effect of hormone therapy could be headaches. However, I would discuss the headaches with your doctor to make sure that it's not something else.

    Joel

  • Also I wonder if anybody has taken melatonin for sleep?

  • I haven't read all responses and I've only been on this road with my dad since June. I just wanted to reach out my hand and let you know I undrstsbd your pain and I'm here if you need me

  • Daddyishealing thank you for the good wishes. I wish your Dad a speedy recovery and a return to good health.

  • Ty. Add results yesterday 2.34 yayy still dropping. Chemo results no progression. Shrinkage of some lymph nodes. I personally think S 3rd me should have been added to drop quicker during chemo and there chemo would have been more beneficial if castrate level. Happy sigh results though of course we all want to hear zero Mets but no progression is great news and I'm going to wish the same for you and dad

  • I have no expertise here, but send best thoughts and wishes to your father.

    QL

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