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Side effects of bicalutamide/tamoxifen treatment?

User
Posted 27 Jun 2019 at 16:13

hi all

I am now about 19 months into 2 years HT,  breast pain gone, though some growth has remained. Still fatigued easily and red blood count still low.

But I wanted to ask the community about your knowledge and experience of other side effects? The reason I ask is because for a while now I have developed some limb tingling, particularly in my lower left leg and foot. As well as this I am getting weird pains in my feet and in my hands

Can these be side effects of HT? 

 

Bill

User
Posted 27 Jun 2019 at 17:34

I can answer the breast part, but not the second part.

Tamoxifen can reverse breast bud/gland growth which has occurred during the last 12 months, but not growth before that. It most effectively and quickly reverses growth that just happened, and is less effective and slower at reversing older growth. It cannot reverse fibrous growth that forms to support the breast glands, and I don't think it has any impact on fat growth. It takes about 3 months to build up the final blood concentration of tamoxifen from when you start taking it, so it might be a couple of months before you see it start to work. (I have a theory that initial dose escalation could get it working within 8 days, but that's not got any scientific peer review.) Tamoxifen works for about 70% of the people who try it, but not everyone. It probably helps in some cases even when it doesn't work completely.

If it doesn't fully remove breast growth, it might be because what's left is fat redistribution, and will require a weight loss program (possibly after you come off hormone treatment). If you can't feel any breast glands/buds, then the tamoxifen has probably done as much as it can.

Tamoxifen can give you non-alcoholic fatty liver disease (NAFLD). You might want to get a periodic Full Blood Count (FBC), Liver Function Test, and Gamma-glutamyl transferase (GGT or Gamma-GT) test done at your GP. Check your Alanine Aminotransferase (ALT) level and Platelet count. Tamoxifen will likely push ALT above normal anyway, but if it's way above normal and Platelet count is low, you are at risk of getting NAFLD. If your GGT is also above normal (high alcohol intake makes this more likely), any fatty liver disease is more likely to turn into liver sclerosis long term. About 50% of women on Tamoxifen for 5 years get NAFLD, although on the plus side, they are less likely to get a breast cancer recurrence than the women on Tamoxifen who don't get NAFLD - the mechanism behind that is unknown. I haven't seen any data for men, but they are usually on it for less time and at a lower dose, which may mean the percentage getting NAFLD is lower.

User
Posted 27 Jun 2019 at 18:25

Bill

I can't comment on the pain you're experiencing.  I'm 16 months into the same treatment as you but I haven't experienced pain.  That said, I hate this treatment.  I now only need to shave once per week, my body hair has gone, my muscle tone has gone, I'm tired and yet don't always sleep well and I'm very forgetful and significantly reduced in my ability to concentrate.  I finish in August (18 months for me) and i won't be sad to stop.

Maybe a call to the specialist nurses to see if the pain you are experiencing is coneected to the treatment?

Ulsterman

User
Posted 27 Jun 2019 at 21:15
10 months on 150mg/day for me. I’ve had weight gain, tiredness, lack of energy, woolly-headedness (which has largely worn off) and complete loss of libido, but no hot flushes or sleeping problems. Everyone seems to be affected differently by it.

Best wishes,

Chris

User
Posted 28 Jun 2019 at 12:14

KayakerBill,

If you stop taking it completely, it will take your body about 4 weeks for the level in your blood to drop from the 20mg/day level to that of the twice weekly dose, so you could stop it for 4 weeks and then resume 2 per week, if you want to get down to that level in the shortest possible time (4 weeks).

If you change from 20mg/day straight to 2 per week, it will take 3 months for the level in your blood to drop to that of the 2 per week level.

It doesn't matter which you do, but if you are trying to match dose to symptoms, it helps to understand that it takes 3 months to build up to the final level in your blood when you start taking it, and 3 months to decay away after you stop taking it. The effects of it will be noticeable in less than the full 3 months (typically 1.5-2 months, depending on target dose).

I am also dosing according to symptoms, which has the blessing of both my GP and my consultant, because my liver is not completely happy with it.

User
Posted 27 Mar 2021 at 08:08
17 months after stopping bicalutamide treatment and 3 years after radiotherapy-

PSA <0.1

Feeling fine now, still have small breasts though which causes me to feel self conscious. I need to approach my GP to ask about referral for be breast removal surgery which he has said he would do.

I imagine it will take some time though in current situation and my issue is way down the priority list of people awaiting operations

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User
Posted 27 Jun 2019 at 17:34

I can answer the breast part, but not the second part.

Tamoxifen can reverse breast bud/gland growth which has occurred during the last 12 months, but not growth before that. It most effectively and quickly reverses growth that just happened, and is less effective and slower at reversing older growth. It cannot reverse fibrous growth that forms to support the breast glands, and I don't think it has any impact on fat growth. It takes about 3 months to build up the final blood concentration of tamoxifen from when you start taking it, so it might be a couple of months before you see it start to work. (I have a theory that initial dose escalation could get it working within 8 days, but that's not got any scientific peer review.) Tamoxifen works for about 70% of the people who try it, but not everyone. It probably helps in some cases even when it doesn't work completely.

If it doesn't fully remove breast growth, it might be because what's left is fat redistribution, and will require a weight loss program (possibly after you come off hormone treatment). If you can't feel any breast glands/buds, then the tamoxifen has probably done as much as it can.

Tamoxifen can give you non-alcoholic fatty liver disease (NAFLD). You might want to get a periodic Full Blood Count (FBC), Liver Function Test, and Gamma-glutamyl transferase (GGT or Gamma-GT) test done at your GP. Check your Alanine Aminotransferase (ALT) level and Platelet count. Tamoxifen will likely push ALT above normal anyway, but if it's way above normal and Platelet count is low, you are at risk of getting NAFLD. If your GGT is also above normal (high alcohol intake makes this more likely), any fatty liver disease is more likely to turn into liver sclerosis long term. About 50% of women on Tamoxifen for 5 years get NAFLD, although on the plus side, they are less likely to get a breast cancer recurrence than the women on Tamoxifen who don't get NAFLD - the mechanism behind that is unknown. I haven't seen any data for men, but they are usually on it for less time and at a lower dose, which may mean the percentage getting NAFLD is lower.

User
Posted 27 Jun 2019 at 18:25

Bill

I can't comment on the pain you're experiencing.  I'm 16 months into the same treatment as you but I haven't experienced pain.  That said, I hate this treatment.  I now only need to shave once per week, my body hair has gone, my muscle tone has gone, I'm tired and yet don't always sleep well and I'm very forgetful and significantly reduced in my ability to concentrate.  I finish in August (18 months for me) and i won't be sad to stop.

Maybe a call to the specialist nurses to see if the pain you are experiencing is coneected to the treatment?

Ulsterman

User
Posted 27 Jun 2019 at 18:48

Thanks

Ulsterman, different locations do different treatments I guess, yours is 18 months mine is 24

I have similar problems to you re: fatigue, strength, dry skin, no body hair, lack of sleep - not even mentioning the bloody hot flushes. Maybe the anaemia has something to do with the tingling and feet/hand aches

 

yet again I am wishing to stop but going against the Consultants advice feels a toughie, Ive discussed it with my wife and she is wanting me to see it through

User
Posted 27 Jun 2019 at 19:19

After 48 weeks on Zoladex, I have now just moved onto Bicalutamide and Tamoxifen as evidence suggests this is a more easily tolerated path. Expect another year on hormone therapy subject to PSA remaining low.

 

User
Posted 27 Jun 2019 at 19:21

Bill

I forgot to mention weight gain!

I've been sorely tempted to give up, but I'm almost at the end.  If I had to go to 24 months, I'd end up looking like the Michelin man.  That said, I will ask my oncologist if there would be any benefit to me continuing for another 6 months and, if she said yes, I'd continue.  I'd like to maximise my chances of a cure.

My PSA has remained at <0.006 and I want it to stay there.

Ulsterman

User
Posted 27 Jun 2019 at 19:36
I had all the above side effects, and add hot flushes and thin skin. The last one is important to me as a climber - if I wasn't careful, my hands would easily end up looking like something out of a horror film. It was the fatigue that finally got me, it frankly destroyed me and I stopped at 14 months. The onco was OK with that, but it really wasn't her choice. I was that broken, even my wife and mum agreed it was time to stop.

Around a year later, skin and brain work again, moobs reduced, hot flushes gone, I've lost the weight and muscle tone has returned. Took a bit of work though! PSA is 0.004.

User
Posted 27 Jun 2019 at 20:02
Very interesting post as Bicalutamide does not reduce testosterone , it simply blocks its use by the cancer. However it can have some estrogen like symptoms. I was on 150 mg and 20mg Tamoxifen for exactly 11 months. Never touched my libido tbh nor any hot flushes. My fatigue hasn’t altered at all since I’ve been off it. Nor has poor concentration. Can’t comment on ED as was only 8 months post op so was knac**erecd anyway. Breast soreness but zero growth. Good luck all

If life gives you lemons , then make lemonade

User
Posted 27 Jun 2019 at 20:03
Zero weight gain also

If life gives you lemons , then make lemonade

User
Posted 27 Jun 2019 at 21:15
10 months on 150mg/day for me. I’ve had weight gain, tiredness, lack of energy, woolly-headedness (which has largely worn off) and complete loss of libido, but no hot flushes or sleeping problems. Everyone seems to be affected differently by it.

Best wishes,

Chris

User
Posted 27 Jun 2019 at 23:51

Originally Posted by: Online Community Member
Very interesting post as Bicalutamide does not reduce testosterone , it simply blocks its use by the cancer. However it can have some estrogen like symptoms. I was on 150 mg and 20mg Tamoxifen for exactly 11 months. Never touched my libido tbh nor any hot flushes. My fatigue hasn’t altered at all since I’ve been off it. Nor has poor concentration. Can’t comment on ED as was only 8 months post op so was knac**erecd anyway. Breast soreness but zero growth. Good luck all

It blocks all Testosterone receptors. Unfortunately, it's not just specific to cancer cells (that would be fantastic). It is significantly worse than the LHRH drugs for breast growth.

I was on it for 6 months at the wrong dose (50mg instead of 150mg). That didn't reduce PSA by much, but gave me most of the symptoms:
Loss of nocturnal erections and "morning wood" pretty instantly,
Reduction in semen by around half,
Reduction in testicle size,
Nipple pain and breast bud growth (both completely reversed by Tamoxifen),
Thinning of body hair,
Loss of body odour.

I then switched to Zoladex, and that added:
Loss of libido,
Loss of semen,
Fat gain,
Blood Glucose increasing,
Fragile fingernails.

Still no hot flushes though.
No loss of erections, but loss of libido makes you easily not bother.

However, 4 months after switching from bicalutamide to Zoladex, I noticed:
Some recovery of "morning wood" (unexpected if not entirely unwelcome),
Possibly some recovery of body hair (not completely sure about that as I'm not measuring it, but at least no further loss). Today, I was talking with someone on Zoladex for 2 years, and he is still quite hairy. I had not thought that was an avoidable side effect until today.

A couple of days ago, I was worried by these last two symptom reversals in case it indicated my last Zoladex injection had not worked, so my GP did a PSA and testosterone test. PSA is still falling which is good and suggests Zoladex injection probably hasn't failed, but haven't got the Testosterone result back yet - hopefully tomorrow.

EDIT: Testosterone came back as 0.2, which means Zoladex injection worked. Maybe loss of "morning wood" and body hair are related more with bicalutamide than Zoladex?

Edited by member 28 Jun 2019 at 10:07  | Reason: Not specified

User
Posted 28 Jun 2019 at 06:49

Originally Posted by: Online Community Member
Very interesting post as Bicalutamide does not reduce testosterone , it simply blocks its use by the cancer. However it can have some estrogen like symptoms. I was on 150 mg and 20mg Tamoxifen for exactly 11 months. Never touched my libido tbh nor any hot flushes. My fatigue hasn’t altered at all since I’ve been off it. Nor has poor concentration. Can’t comment on ED as was only 8 months post op so was knac**erecd anyway. Breast soreness but zero growth. Good luck all

As far as ED goes, in my case, bicalutimide has taken away the desire but not the function. I can still achieve erections if I want to; it’s just that I rarely do want to any more! Obviously, since my RT, ejaculations have been dry, but they still feel the same as they did before.

Best wishes,

Chris

 

User
Posted 28 Jun 2019 at 11:46

Since the breast/bud growth and pain have gone I think I will reduce the Tamoxifen to 20mg twice weekly from 20mg daily

I will monitor thongs closely and if growth/pain returns I can revert to the daily dose

User
Posted 28 Jun 2019 at 12:14

KayakerBill,

If you stop taking it completely, it will take your body about 4 weeks for the level in your blood to drop from the 20mg/day level to that of the twice weekly dose, so you could stop it for 4 weeks and then resume 2 per week, if you want to get down to that level in the shortest possible time (4 weeks).

If you change from 20mg/day straight to 2 per week, it will take 3 months for the level in your blood to drop to that of the 2 per week level.

It doesn't matter which you do, but if you are trying to match dose to symptoms, it helps to understand that it takes 3 months to build up to the final level in your blood when you start taking it, and 3 months to decay away after you stop taking it. The effects of it will be noticeable in less than the full 3 months (typically 1.5-2 months, depending on target dose).

I am also dosing according to symptoms, which has the blessing of both my GP and my consultant, because my liver is not completely happy with it.

User
Posted 28 Jun 2019 at 13:09

Thanks for the information Andy, that’s very helpful to know

User
Posted 27 Mar 2021 at 08:08
17 months after stopping bicalutamide treatment and 3 years after radiotherapy-

PSA <0.1

Feeling fine now, still have small breasts though which causes me to feel self conscious. I need to approach my GP to ask about referral for be breast removal surgery which he has said he would do.

I imagine it will take some time though in current situation and my issue is way down the priority list of people awaiting operations

User
Posted 27 Mar 2021 at 10:49

Great PSA result, long may that continue. 

Ido4

 
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