a Tamoxifen question

This site was created fro whines, whinges and rants remember. So no apologies needed

I've been a martyr to acid reflux ..... tee hee...... but I have suffered for many years. I take Lansoprazole daily and if I forget boy do I know about it. Now whether for you this is because of Tamoxifen I cannot say, but some meds do affect the lining of the stomach. There are the typical Gaviscon and Nexium meds you can get over the counter to help acid reflux. Maybe see if they work first before going to the GP.

LOSING WEIGHT. I am refusing to get on the scales. Like you trying my damndest to drop a little weight. But I am sure what you say is so true about our bodies. They just want to mend and eat nice comforting foods. Plus it is wintery and we all go for good wholesome food. I must admit now I am adding more exercise I have noticed a weight loss. No exciting exercise just the walking, tai chi and aquafit. I chose the later as it has less impact on my aching joints.

I think the plan is do not beat yourself up. We have experienced so much (some even describe it as PTSD) that time is not our enemy we need to use it as our friend to get well

I guess others may know about Tamoxifen and will have some good advice too

Leolady56

PS. You can have a break from all meds but best on the advice and support of your onco team.

Hi

i have been taking tamoxifen since mid October last year. Brand is Teva.  I suffer with indigestion and never have before and i have put on weight despite running 5km most days!  However i lost so much weight  after diagnosis last September i needed to put on weight. 

I have been taking daily lanzoprasole for 2 months and dont think its helped the indigestion at all.  I also developed a dry cough last November which was stopped in its tracks by anti histamines and i have never been allergic to anything before. Oh and i have also developed ovarian cysts just to add to it! 

I actually think i have had it pretty easy side effects wise but the ovarian cysts are being monitored apparently tamoxifen is known to cause this. 

Xx

If you are having more side effects than usual, it is very likely to be the brand of Tamoxifen. Call your GP and ask them to prescribe you another brand, and see how you get on.  Once you find one that you do get on with, you can ask them to state the brand on the prescrption.  

Do go onto the Yellow card scheme website and report your side effects, the more people that do it, the more they take notice. All reported side effects have to be added to the information sheet that comes in each packet.

Hello to you Leolady56, I too have been a martyr to acid reflux, but never more so than currently ha ha.  I have omperazole, although it is not helping at the moment... and gobble my way through gaviscon like there's no tomorrow!    And I am feeling most indignant about the inability to lose weight!  I walk to work, and I do a gentle workout with a pilates ring.  Would love to go swimming but I don't drive and there are no pools conveniently located on public transport routes.  I love swimming and bobbing about in the water.  Come the warmer months I may have to make the extra effort!

I may phone oncology and see if I can get my next follow up brought forward.  And will definitely ask about possibility of different brand of tamoxifen and if they think that will make any difference.

Just trial and error I guess, and patience... ugh.

xxx

Gosh I'm sorry to read you are struggling so, and ovarian cysts - it's the gift that just keeps on giving isn't it!  Running 5k most days?  Are you mad??????  I hobble about 5 feet and I'm shattered ha haaaaaaaaaaa.

I hope that things settle as much as possible for you.  Sending hugs and healing vibes xxxx

thank you Helen.  I will definitely bring it up at next onco appointment.  And go onto yellow card scheme to report side effects.

Best wishes, and thanks again x

Hi there, sorry first time on here. 

I am on tamoxifen, have been since May 2017. I have gained about two and half stone. I can't get it off. Also I have zero sex drive too. ... I am always tired.

I have times when I think do I just come off them and try to be normal (if that's ever possible again) but I am scared too.

Oh my life what will happen when the five years of check ups end. 

Sorry brain over thinking again. 

Night ladies

Oh sweetie don't be sorry, my brain goes into overdrive too, and I suspect we are not the only ones. I am so sorry you are having a rough time with it all. Feels never ending doesn't it.

i know exactly what you mean about wanting to stop but the fear of consequences if we do. If only there were definite figures and odds we could be given to make the decisions we need to.

i recently stopped Herceptin treatment early (after 11 out of 18 treatments) on the basis that research has shown it is most likely that 9 treatments are as effective as 18. I was over the moon to be able to stop as I had a terrible time on it, but there is a tiny part in my brain nagging away, wondering if I did the right thing.

its all a big old unknown, we're all different and respond differently and nobody can tell us with any assurity what will or won't happen if we keep going or indeed stop! 

If I find the secret to shifting the weight (I've been rigidly sticking to diet for 10 weeks and not lost so much as an ounce! Furious!) I will share!

in April I am going to attend MacMillan 'Hooe' workshop - it's over 2 days and it is all about living with or life after cancer, how to manage, cope, make changes to help improve your situation, simple goal setting, how to manage emotions, support networks etc I don't know if you have a Macmillan centre where you are but I would thoroughly recommend visiting them if you do. They have so much to offer by way of support and advice. I went to the one here a few times during treatment when I felt well enough, sometimes just to sit and have a cup of tea or get some peace in a 'safe' environment and I could not ha e done without it.

the future is scary and we risk not living it if we think too much about what's going to happen. I am trying to live by my new motto 'throw caution to the wind what's the worst that could happen' .... I may regret that but you never know ha ha.

good luck with everything xxxx

We always seem to point the finger at the hormone treatment as responsible for any kind of symptoms.  I’ve had tamoxifen from at least 6 different manufacturers over 18 months and not noticed any differences - the active ingredient is the same and the excipients are largely the same.  I do take it last thing at night in case of gastric upset but also so I don’t forget it!  The symptoms I have are those associated with loss of oestrogen; having to work harder to avoid weight gain is part of that.  I need fewer daily calories than I would like...

Your symptoms seem worth proper investigation as it would be a shame to stop taking tamoxifen, which is providing protection against cancer recurrence.

Hi ,

I'm not sure about the differences between brands.  I've been on Tamoxifen since June last year and requested Teva brand which the GP put on the prescription and the chemist knows to get in.  They normally have Relonchem.  I only asked for that after reading another thread on here where more women seemed to get on better on that.  I have no issues with acid reflux anyway. 

I've put on about a stone (compared to pre-chemo weight) since the end of chemo but had lost half a stone during chemo so needed to gain some.  I was worried that the scales were just going to keep going up but it's definitely levelled off.  I eat more healthily than I used to just to get more fruit and veg in but am not trying to lose weight.  Like LL, I think upping the exercise has helped but it can still be difficult post-menopause.  I'd probably like to lose this stone but am not fretting about it at the moment, but rather rebuilding my body and strength and enjoying my food again.  The one good thing about completely losing your sense of taste for weeks on end is that it has made me appreciate the joy of food again. 

All the best,

Linda xx