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Exercise whilst on HT (Bicalutamide).

User
Posted 04 Feb 2020 at 15:06

Interested in what other people in similar situations to mine have done with regard to exercise whilst on long term Hormone Therapy - in my case 150 g of Bicalutamide daily for two years. I'll be starting in the next day or so.

I have experience of this drug as I had 6 months on bical in and around my EBRT back in April 2016 but this is for the long haul as part of  a treatment plan involving 3 sessions of SABR radiation to deal with 3 tiny tumours that a PET scan revealed in pelvic lymph nodes.

I do bicep curls 3 times a week with two 3 kg dumbells. Other than that, my main exercise is gardening when weather permits and a short walk to and from the paper shop (about 15 to 20 minutes a day).

Most of the advice talks about "light" exercise so I'm interested in how others have interpreted this and what worked for them.

User
Posted 05 Feb 2020 at 18:39

There are many reasons to do exercise.

Hormone therapy has a tendency to lose muscle and gain fat, and exercise (combined with right foods) can help combat that.

Strenuous exercise has been shown to slow progression of PCa. There was anecdotal evidence of this for years, but more recently, trials of those on active surveillance showed that those undertaking strenuous exercise stayed on active surveillance significantly longer than those who didn't, and needed to switch to active treatment sooner.

Another big concern is loss of calcium from bones, because without testosterone, your bones will not be laying down much new calcium, but the process to dissolve away old bone calcium continues. It seems that if you are shocking or stressing your bones and your body has calcium and vitamin D3 available, you can still lay down new calcium. So taking a calcium and Vitamin D3 supplement, and undertaking exercise which stresses or shocks bones is very good. Many people here use Adcal-D3, which you can buy from the pharmacy (you'll have to ask, but no prescription needed). You might want to check with your doctor that the calcium is not contra-indicated by any other medication or condition, and your doctor might even prescribe it for you.

Finally, if you have a local prostate cancer support group, many of these run weekly gym sessions either cheaply or for free. I've just come back from one of those.

User
Posted 05 Feb 2020 at 19:27

Bear in mind,Andy, that there is no loss of testosterone with bicalutimide. It blocks testosterone reception, not production.

Pete, I've been on 150mg bicalutimide for almost 18 months (I stop taking it in 11 days' time) and have done reasonably long walks and a twice-weekly exercise class (almost) throughout that period without problems.

One very common side-effect of bicalutimide is breast growth. If your oncologist hasn't prescribed you Tamoxifen to counteract this, I'd strongly suggest asking for it.

Best wishes,

Chris

Edited by member 05 Feb 2020 at 19:28  | Reason: Not specified

User
Posted 06 Feb 2020 at 13:13
I started out on 20mg once a week, but started having breast tenderness after a couple of months. I then increased to 20mg twice a week and that sorted it for me for another year. The tenderness then returned and I first increased the Tamoxifen to 10mg/day and then had breast-bud RT. One or the other (or the combination) completely stopped the tenderness.

Cheers,

Chris

User
Posted 06 Feb 2020 at 13:28

I am prescribed 20mg per day, but with the recommendation I start off taking it twice a week, so I can adjust my dose how I like.

I would suggest 20mg twice a week if you start it with the bicalutamide. (It seems quite well recognised the 20mg/week NICE dose doesn't work.)

Since you have been prescribed it daily, you could do what I do, which is wait until you have symptoms, and then start taking it, but start with a dose escalation to get the level in blood up quickly. So I take it daily for 8 days, and then drop back to twice a week, and stop when pain has gone and growth reversed. I do this because my liver doesn't like it very much, so I adjust dose to symptoms. After the first time I did this, I didn't need it again for 8 months, but I'm back on it again at the moment.

Do get a liver function blood test from your GP after the first 3 months, to check how your liver is coping with it.

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

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User
Posted 05 Feb 2020 at 18:39

There are many reasons to do exercise.

Hormone therapy has a tendency to lose muscle and gain fat, and exercise (combined with right foods) can help combat that.

Strenuous exercise has been shown to slow progression of PCa. There was anecdotal evidence of this for years, but more recently, trials of those on active surveillance showed that those undertaking strenuous exercise stayed on active surveillance significantly longer than those who didn't, and needed to switch to active treatment sooner.

Another big concern is loss of calcium from bones, because without testosterone, your bones will not be laying down much new calcium, but the process to dissolve away old bone calcium continues. It seems that if you are shocking or stressing your bones and your body has calcium and vitamin D3 available, you can still lay down new calcium. So taking a calcium and Vitamin D3 supplement, and undertaking exercise which stresses or shocks bones is very good. Many people here use Adcal-D3, which you can buy from the pharmacy (you'll have to ask, but no prescription needed). You might want to check with your doctor that the calcium is not contra-indicated by any other medication or condition, and your doctor might even prescribe it for you.

Finally, if you have a local prostate cancer support group, many of these run weekly gym sessions either cheaply or for free. I've just come back from one of those.

User
Posted 05 Feb 2020 at 19:27

Bear in mind,Andy, that there is no loss of testosterone with bicalutimide. It blocks testosterone reception, not production.

Pete, I've been on 150mg bicalutimide for almost 18 months (I stop taking it in 11 days' time) and have done reasonably long walks and a twice-weekly exercise class (almost) throughout that period without problems.

One very common side-effect of bicalutimide is breast growth. If your oncologist hasn't prescribed you Tamoxifen to counteract this, I'd strongly suggest asking for it.

Best wishes,

Chris

Edited by member 05 Feb 2020 at 19:28  | Reason: Not specified

User
Posted 05 Feb 2020 at 20:32

Originally Posted by: Online Community Member
Bear in mind,Andy, that there is no loss of testosterone with bicalutimide. It blocks testosterone reception, not production.

There's not a lot of difference between not having testosterone, and not being able to use it (except for the speed of recovery afterwards).

User
Posted 05 Feb 2020 at 21:25

On the tamoxifen issue the oncologist was on this immediately when I told her about breast soreness and growth on my 6 month stint back in 2016 so it's on the prescription. My older brother has had this as well with his long stretch on bical but says he is not sure it has made too much difference to him.

Good points about the high impact exercise in terms of bone strength. I've read a bit about this. My preference is for longer and brisker walks although my oncologist seems to think something that got my heart rate up a bit more than walking might be useful as well. As I am type 2 diabetic (and HT is no friend to diabetes patients) she was keen to get me to do more. I am going to try and increase my use of weights as well. Thinking of joining a gym and getting a bespoke programme.

User
Posted 05 Feb 2020 at 21:37
Best wishes for your treatment, Pete. I've been fortunate and got through my 18 months with minimal side-effects. I had a few weeks at the start of feeling that my head was stuffed with cotton wool and unable to think clearly, but that cleared up. I've had no hot flushes, and the only other impact (other than complete loss of libido, as one would expect) was the breast growth which, for me, only kicked in after I'd been on bicalutimide for over a year. The Tamoxifen and 2 sessions of breast-bud RT sorted it out.

Cheers,

Chris

User
Posted 05 Feb 2020 at 22:09

Tamoxifen works in about 70% of cases. Tamoxifen has got a long [complicated] half-life, which also means it takes a long time to build up the working level in the blood. Usual dose is 2 x 20mg/week, but it takes 3 months to reach target level in blood. If you start taking it with the bicalutamide, that doesn't matter because it takes about the same time before breast growth starts. If you only start taking it when you get breast pain or growth, then it takes a long time to have any effect. I do my own initial dose escalation to get around that, but that's completely unorthodox, and is because I try to take it only when I'm experiencing breast growth, because my liver is not overly happy with it. You should get a liver function blood test after you've been on it for 3 months to make sure your liver is happy with it, or it could lead to non-alcoholic fatty liver disease (NAFLD) after long term use. It's generally not available to people with cardio problems or increased chance of DVT.

The radiotherapy blast to the chest works in about 50% of cases. (I wondered if that means probably just one boob, but the research paper isn't that specific;-) There is a small chance of slight heart muscle damage with the treatment (2%), but no cases where this caused any problems - it's only been identified when looking for something else.

If you are diabetic and taking an anti-diabetic drug, you should strongly consider using Metformin as your anti-diabetic, which is particularly beneficial to hormone therapy patients. It counteracts some of the undesirable effects HT has on lipid levels, and it's been shown to reduce chance of cancer recurrence. Other anti-diabetic drugs don't have these effects. (Metformin is sufficiently beneficial that there are trials of using it in non-diabetic patients on HT, to work out the optimum dose.)

User
Posted 06 Feb 2020 at 11:34

The metformin thing is interesting Andrew. Using the HBa1c test my first reading was 49 - 2 points above the threshold - the next 2 readings were both 48. I'm hoping it will dip back to merely pre diabetic in April but my GP is not minded to put me on metformin for diabetes management as it should be manageable by lifestyle changes given that I am only just over the threshold.

On tamoxifen, I've just picked up my prescription for that and the bicalutamide this morning. I'm looking at the boxes as if they contain nuclear waste! The dose for the tamoxifen is 20 mg to be taken daily and the review is down for January next year. From what you say and from what my oncologist says tamoxifen is more effective if taken on a preventative basis being far less effective if taken when the gynaecomastia starts. This may explain why my brother has stopped taking it because he started taking it once the breast soreness and swelling started and not as a preventative.

Certainly looks as if the liver can take a potential beating from both drugs. Glad I did dry January now and I will certainly be looking to reduce consumption on a permanent basis.

User
Posted 06 Feb 2020 at 11:44
That’s a very high dose of Tamoxifen, Pete. Normally for prostate HT you start with 20mg once a week and increase as necessary. 20mg/day is the level it’s taken at for its main purpose of breast cancer treatment. One relatively common side-effect of Tamoxifen is cataracts, so I wouldn’t personally want to take more than was necessary.

Best wishes,

Chris

User
Posted 06 Feb 2020 at 12:50

I might go back to the oncology team about the dose. The NICE guidelines are 20 mg once per week. That said, numerous studies have indicated that the low dose is pretty much useless and it was the 20 mg daily dose that had a dramatic effect in reducing gynecomastia. 

So my thought process is this - the NICE guidelines seem to be cautious in the extreme and numerous studies have shown the low dose to be almost completely ineffective.

I'm thinking I go with the daily 20 mg dose or put up with breast pain and enlargement (I will get this as I got it on my 6 month course of bical) and sack tamoxifen off altogether. No point in taking a small and demonstratively ineffective dose. 

I'll seek advice.

User
Posted 06 Feb 2020 at 13:13
I started out on 20mg once a week, but started having breast tenderness after a couple of months. I then increased to 20mg twice a week and that sorted it for me for another year. The tenderness then returned and I first increased the Tamoxifen to 10mg/day and then had breast-bud RT. One or the other (or the combination) completely stopped the tenderness.

Cheers,

Chris

User
Posted 06 Feb 2020 at 13:28

I am prescribed 20mg per day, but with the recommendation I start off taking it twice a week, so I can adjust my dose how I like.

I would suggest 20mg twice a week if you start it with the bicalutamide. (It seems quite well recognised the 20mg/week NICE dose doesn't work.)

Since you have been prescribed it daily, you could do what I do, which is wait until you have symptoms, and then start taking it, but start with a dose escalation to get the level in blood up quickly. So I take it daily for 8 days, and then drop back to twice a week, and stop when pain has gone and growth reversed. I do this because my liver doesn't like it very much, so I adjust dose to symptoms. After the first time I did this, I didn't need it again for 8 months, but I'm back on it again at the moment.

Do get a liver function blood test from your GP after the first 3 months, to check how your liver is coping with it.

User
Posted 06 Feb 2020 at 13:44

Really helpful replies Chris and Andy. I've just emailed my brother to get a bit more detail on his dosage and side effects. I think he told me he only started it after the issue became bothersome.

User
Posted 06 Feb 2020 at 14:18

One other thing, if you get breast pain, that's obvious. However, pain doesn't always precede breast growth, so you want to be able to identify breast growth quickly too. I suggest a couple of things:

Measure your breast size regularly. No, I didn't know how to do that either, but what you do is measure right around your body at the level of the nipples, and again just under the breast. The difference is your breast size (in inches, that's a women's bra size, I believe). So I suggest doing this weekly, and keeping an eye on it (I stick it in an excel spreadsheet).

Second, have a really good feel of your breasts so you know what they feel like. If breast buds start developing, it won't initially make any difference to your breast size, but you will feel them under the nipples. I first noticed this when I was clutching a pile of books against my chest - it felt like there was a marble against my chest, but of course, it's inside your chest. Tamoxifen completely reversed that growth.

User
Posted 06 Feb 2020 at 15:16

Thanks Andy. I will establish my Wonder Bra size later today! Seriously, good advice in terms of monitoring - it hadn't occurred to me.

My brother has got back to me. He is being treated at the Christie in Manchester. He was prescribed one 20 mg tablet of tamoxifen a week (in line with NICE guidelines). Utterly useless he says and although he still takes it he hasn't gone back and asked for a bigger dose. I guess one tablet a week is the pharmacological equivalent of these very low alcohol beers - the dose is so small as to be insignificant. Does make you wonder about NICE and their guidance on this and any other medical issue.

I am going to follow your regime for starters. I'm starting the bical tonight so I thought one tamoxifen on Sunday and one on Wednesday and escalate as appropriate. I'll report back what the team at Clatterbidge say.

User
Posted 06 Feb 2020 at 15:39

Just to correct what I said earlier. I thought my brother had stopped taking it but he hasn't and he did get it from day one. He says he can't know whether the enlargement/soreness would have been worse without it so he just carries on with one a week

User
Posted 06 Feb 2020 at 16:32
I'd suggest that your brother ask for the dosage to be increased, Pete. All I had to do was phone my oncologist's secretary at Clatterbridge, and she arranged for a fax to be sent to my GP authorising the change. Very easy to do.

Cheers,

Chris

User
Posted 07 Feb 2020 at 11:01
I suspect my brother might just be accepting the breast issue as just one of those things. He is far more exercised by the appearance issue than any pain. The internet is a good/bad thing - done some heavy duty googling over the last 24 hours. I try to studiously ignore anything that isn't an academic study or from a mainstream health provider but there is so much rubbish out there.

Anyway, several studies describe the 20 mg daily dose as safe and effective. Spooked by the cataract issue, I did some research and it is absolutely an issue but mainly in women who have been on it for 5 years or more who have something like a 20% increase in risk. I will be on it for 2 years. If I finally decide to go by the daily dose, I will have extra eye tests to make sure.

One thing is for sure - the NICE recommendations make little or no sense to me. One tablet a week will have zero effect according to every study I've read so if you are worried about the side effects of tamoxifen it is probably best not to take it. That's the conclusion I have drawn so far.

Gynecomastia and the associated pain are my most feared side effects. I think I need to talk it through with a health professional.

User
Posted 07 Feb 2020 at 20:34

I have been taking Bicalutamide for around 15 months now.  I had a dose of radiotherapy at the outset to restrict breast growth.  After about 10 months there was a noticeable swelling to the breast and they were quite tender and sore.  

After reading posts on this forum I asked for and was given Tamoxifen, 10mg tablet once a day.  After a couple of months the swelling has gone down and tenderness gone.  By my experience, 10mg daily is an adequate dose.

There has been no mention of testing or monitoring liver function so I will ask about that on my 6 monthly visit in March.

 

I was originally told that I would be taking Bicalutamide for two years (ends Nov 2020)  I seem to have lost quite a bit of flexibility in my body, legs and knees a bit achy but not much. Complete loss of libido but apart from that described above,  manageable if a bit demoralising.

I'll be glad to see the back of them. I hope that they are doing the trick.

I wish you all well,

stu knowles

User
Posted 07 Feb 2020 at 20:57
Stu, I too was originally supposed to be on bicalutimide for two years, but my oncologist was happy for me to finish at 18 months. He said that recent research has shown that 18 months is equally as effective as two years. Consequently, I’ll be taking my last tablet 9 days from now, 16th Feb! Might be worth asking your oncologist about this?

Best wishes,

Chris

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 09:41

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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