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Exercise whilst on HT (Bicalutamide).

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User

Posted 07 Feb 2020 at 21:12

I've more or less decided to take the 20 mg per day and monitor the side effects. In my somewhat obsessive research I've turned up numerous papers that show 20 mg per day to be the optimal dose, that the NICE recommendations are completely outdated and recognized as such and that there is a strong view now that Tamoxifen is far more effective than radiotherapy.

The most convincing document I found were some minutes from a NHS trust in Derbyshire. It was decided there that tamoxifen should be the preferred prophylactic over radiotherapy and that 20 mg was the optimal dose. Interestingly there were GPs at the meeting representing primary care and they said that they were happy to prescribe the drug for this purpose as it was a drug they were familiar with. Women, of course, can be on it for 5 years.

Finally I have to recognize that my Oncologist is a particularly eminent one. I should have more faith.

User

Posted 07 Feb 2020 at 22:27

Originally Posted by: Online Community Member

Women, of course, can be on it for 5 years.

Just under half of them get non-alcoholic fatty liver disease (NAFLD) as a result, but that's preferable to suffering a breast cancer recurrence. Unfortunately, a small percentage of cases of NAFLD turn into cirrhosis of the liver.

This is why to check your liver is coping with it. My GP wasn't worried about effects of NAFLD in my case because my Gamma-GT is very low (as a non-drinker), so NAFLD is unlikely to turn into cirrhosis, but I decided to try and avoid NAFLD. If you drink or consume significant fat, then that's even more important. My full body MRI scan was at my original peak Tamoxifen dosing, and it showed my liver fat had gone up from 5% (normal) to 8% (half-way to NAFLD) in 3 months. This was why I sought to minimise Tamoxifen dose by adjusting dose to symptoms. I don't want boobs, but not so badly as to trash my liver.

So, after 3 months, get a liver function test, gamma-GT (which for some reason isn't included in liver function test in my area), and a full blood count.
Check your alanine aminotransferase (ALT) level hasn't gone sky high, and if it has, check if your platelet count has dropped (even if still in normal range). That indicates your liver doesn't like Tamoxifen, and it is likely to give you NAFLD. Then check your Gamma-GT, and if it's below around 30, there's a good chance NAFLD won't give you cirrhosis, but the higher it is (even within normal range), then the chance of cirrhosis with NAFLD increases.

Edited by member 07 Feb 2020 at 22:58 | Reason: Not specified

User

Posted 08 Feb 2020 at 10:14

Andy - would I be right in thinking these liver tests would have to be done privately? I know that on my last PSA test the oncologist had ticked 3 boxes under Liver and it appears my liver is not a cause for concern at the moment. I don't know the detail though.

I'm in a bit of bad place mentally at the moment. Let's just say sore moobs is a side effect that I fear (having experienced it already) over all other considerations. I could see me dropping the HT altogether and putting quality of life over length of life in extremis. I am 71 so this affects my decision making in a way it wouldn't do if I was 20 or even 10 years younger.

I also feel a bit of a wuss. Women have to put up with sore breasts every month throughout their fertility.

Just a reflection on different prescribing regimes. We have the "chocolate fireguard" NICE advice (now 12 years out of date) of one tablet a month. My brother is on this and it is completely ineffective and virtually every trial done on low dose tamoxifen shows it to be useless. Cheshire Chris and I are being treated at the same centre but by different oncologists and these 2 doctors have a different approach to tamoxifen as well. Finally there is another (NHS in Derbyshire) which says radiotherapy should only be used for gynecomastia if tamoxifen is unsuitable and that 20 mg a day is default position in that area.

I have yet to take a tamoxifen pill - 2 days back on bicalutamide.

User

Posted 08 Feb 2020 at 10:22

You should be able to get a blood test for liver function done at your GP’s surgery, Pete. Mine was happy to oblige. Fortunately in my case, it came back showing no issues.

You could do what Andy does and start taking the Tamoxifen only when (and if) you start getting tenderness in the breast buds, and stop again when it goes away.

Best wishes,

Chris

User

Posted 08 Feb 2020 at 10:49

On a lighter note, glad I did dry January now. Whilst not a heavy drinker I was drinking most days and, on occasions, would go mad with the red wine. Doing this has, as the organization behind claims, reset my attitude to alcohol a bit. I didn't miss it half as much as I thought I would have. This week, first week back on it as it were, I've had 2 units.

This can only be good given the various medications I am on.

User

Posted 08 Feb 2020 at 11:58

Pete,

Ask your GP for a liver function test, Gamma-GT (if not part of liver function test), and full blood count, about 3 months after starting tamoxifen. If you have a PSA test due around then through your GP, or any other blood test, add them on to that. Won't cost you anything - your GP should be keeping an eye on your general health, and how your body handles the prostate cancer drugs is part of that, but your GP may not be aware of things to keep an eye on for tamoxifen use. It's good that you know your liver is fine to start with.

By the way, the breast tenderness (pain is too strong a word) is not a big issue by itself - it's an early warning that breast buds are growing, and it's the growing breast that concerned me, not the tenderness.

Edited by member 08 Feb 2020 at 11:59 | Reason: Not specified

User

Posted 08 Feb 2020 at 13:04

Yes - tenderness probably a better word. Mine seemed quite bad first time round on bical but that was only six months and coming off the treatment resolved the issue although still a bit mooby if that's the right word. Clearly 24 months on bical is a different kettle of fish. The buds are horrible I agree.

Odd what side effects bother people. I had the hot flashes but was OK with them. I also had the odd period of tearfulness for no reason but, again, quite manageable. I think the fact that I knew it was the hormones helped with that.

User

Posted 10 Feb 2020 at 17:51

Back, briefly, to the original subject behind this thread, I've been looking at various ways I can get more structure into what I do in terms of fitness. One thing I'm looking at is using a personal trainer if only for a few sessions to get me on the right path. In Warrington, many of the leisure services are run by a company called Live Wire and they have a number of personal trainers. Some of these have a speciality in dealing with older people and, in particular, cancer patients. I'd be interested if anybody else has used a personal trainer and what, if any, the benefits are.

User

Posted 22 Apr 2020 at 08:41

I totally support the advise for regular exercise for men on hormone therapies and also men receiving radiotherapy or before and after surgery. It will help maintain mood, weight, core strength, help protect the heart and brain - it is one of the most important help help factors to help you keep-healthy after cancer.

In fact, the evidence is so strong it is actually in NICE guidelines that men should be referred for a 12 weeks exercise programme - so (post Covid) if you do not have acces sto a local group you can ask your GP for referral to the local municiple Gym

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