Tamoxifen

Hi all
I was wondering if any of the men reading this had Tamoxifen and if so, did you have any side affects ?

Interestingly I had both positive and negative side effects.

First the positive, Prior to starting Tamoxifen I was always bad tempered with a short fuse! After a few months on the drug I found myself to be calmer and others found me way easier to live with!

The negative is that the drug completely destroyed my libido. Fortunately my partner was in the throws of the menopause and we have a very solid relationship so cope with this, but be prepared.

My other observation is make sure you come off the drug SLOWLY, on the instructions of my oncologist I simply stopped it and the side effects (mental health wise) were not nice.

I has to be emphasised that these experiences were mine many men take the drug with absolutely no issues.

I was initially put on Letrazole which made my bones and muscles hurt a lot, so it was switched to Tamoxifen. I lasted less than 6 months on it. The physical side effects of bone and muscle pain continued; and what with that, and side effects post chemotherapy I could hardly walk.
Tamoxifen also had a negative impact on my mental health, which was not nice.  
I was finally switched to Extamastene, I was on that for five months until it to was stopped as it was raising my blood pressure.

For the last 14 months I’ve not had any further hormone tablets. I feel quality of life must be balanced with the the benefits of hormone treatments, all of which are prescribed to men, in the same way as ladies, and in truth I’m not sure there has been many documented studies done on the side effects, if these meds, in men. Anatomically we are different and hormones play different parts in males and females, treating both sexes the same, Seems a little strange to me, but that is my opinion only.

Hi Male now 59, had a mastectomy at 57.5 years. On Tamoxifen for last year and half. Noticed another lump in my remaining breast - feels very similar to teh one chopped out. I. Thought Tamoxifen was supposed to prevent this. WOrking overseas so wil be xmas before i can get it checked out

Hot flushes on and off for a year or so, but seems to settle down now

hi all,
I’m on Tamoxifen since February this year and so far the side effects are very small. Feeling very hot at the moment and start sweeting easily. But maybe, that is down to the lovely English summer days. I think, it also makes me sleep worse than before.

However, I have another question and wonder if anyone else here has similar experiences.
Since I’m taking Tamoxifen, I have more problems with my teeth and also pain in my bones. A female friend told me, that she experienced similar issues.

Has anyone had similar issues and if yes, what have you done against it?

thanks in advance all,
HJ

HI @HF76

I have not heard of that one about the teeth
Have you spoken to your Oncologist about it?

Hi @The_Plumarade ,
Haven’t yet, but will do that.
Thanks
HJ

Hi @The_Plumarade
FYI, have spoken to my oncologist, they have not heard about and impact of Tamoxifen on teeth.
However, for the bone and muscle pain, they recommend to take a supplement called Glucosamine. Not sure if anyone here has taken it and can confirm that it has a positive effect?
thanks all
HJ

I have not heard of it but I am sure someone else here has

Hello HF76

I was in Tamoxifen back in 2019 for about 5 months I came off it and went on to Letrazole for a further four months sadly both of these Hormone blocking drugs had a field day with both my bones and muscles, I could hardly walk at one point as my heels hurt so much. I was later put on Extamastene which I tolerated rather well I thought, until I found out it was silently raising my blood pressure which caused an Abdominal Aortic Aneurysm that I already had to grown rapidly leading to the stopping of hormone drugs and the surgical repair and grafting of my Aorta.

I never took hormone drugs again….until this year when the Cancer returned it had traveled to my lungs.
I’m now back on hormone blockers Anastrazole and Zolodex injections.
And use bone and muscle pain has returned. I asked my Oncologist about Glucosamine he suggested I wait until after my three month scan… so please ask your oncologist they will know of any side effects . Others I know say it does help but buy reputable supplements, some are garbage.

Take care of you

Regards
D

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Hi D,

Many thanks for your response.

Sorry to hear that the cancer came back. I hope you will fight it succesfully.

My Oncologist recommended Glucosamine and I have ordered it from a reputable distributor, so will try it.

Take care

HF

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Can you let us know how you get on with them ?
Doug

Hi Doug,
Will do that.
it could take 2-3 months to feel an impact.
Will give an update asap.
HF

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Hi all,
thought I give a short update here on re the effect of Glucosamin.
After taking Glucosamine for nearly 3 months now, I can say, that I feel my muscle and bone pain got better. However, I have also started doing more exercise again and it could be the combination. It doesn’t cause any side effects, as it is a supplement only.
I hope this helps.
HF

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I read your post about Glucosamine with interest as I was thinking of trying it . I started taking Glucosamine with Chondroitin and Vitamin plus a Vitamin D ( though I was on that anyway ) and Turmeric about a month ago and there’s is a definite improvement in my injured left knee and shoulder . It’s a bit of minefield with supplements as some are not recommended for BC but all the above check out ok .

Glad it helping you too.
Joanne

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