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Tamoxifen how well tolerated

8 REPLIES 8
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Re: Tamoxifen how well tolerated

Hi Sarah

Thank you so much for your lovely message and kind words. I'm sorry that you didn't get your results but hope you will get them soon.

I had chemo first, then a mx and node clearance plus implant at the same time, then radiotherapy and now Tamoxifen. Helly describes chemo as "doable but tough" and I think that's a good way to put it. As with all drugs, it affects everyone differently. I can't say it was easy for me but as I didn't really have an option somehow I found a way to get through it and you will too. Hopefully it will be kind to you. My lovely BCN told me that I owed it to myself to do whatever I could to get rid of all trace of the lump and her words kept me going. There are monthly chemo groups on here that I would recommend as you will all be going through it at the same time and can support each other. Radiotherapy was a lot easier but, like Helly said, it was tiring going to hospital every day for 3 weeks.

Definitely accept any and all offers of help when you go through treatment and do stay away from Google! I'm very happy to answer any specific questions you think of, now or in the future, on here or private message. You are on a steep learning curve at the moment, so ask as many questions as you like.

My very best wishes to you

Evie xx

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Re: Tamoxifen how well tolerated

Hi Sarah

 

I found the whole journey doable but tough, I was lucky to have good support from my hubby and also from the NHS which helped as I really do not cope well with needles, the toughest parts for me were the biopsies and the docetaxel chemo, everything else was managable, with rads being the easiest part.

 

Dont mess about with any fancy washes and creams, you just need simple shower gel for washing and aveeno cream for moisturising your skin as neither have any nasty chemicals or metals in them ~ thats very important. I had 20 rads over 4 weeks and the worst part was travelling as the hospital is an hour away and doing it everyday is exhausting, but you develop a little friendship group with the other people attending at the same time, so you sort of support each other along the way.

 

Just be kind to yourself and try and take time every day to enjoy small things whenever you can, will really help with your mood

 

Thinking of you

Helly xx

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Re: Tamoxifen how well tolerated

Thank you so much for this Jill. Really helpful and I so appreciate you taking the time to reply to me.

Sarah x

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Re: Tamoxifen how well tolerated

Thank you so much Helly, your reply really helped as reading so many awful things about Tamoxifen but as Evie says people probably only feel the need to post when things go wrong. How was radiation for you please? I am probably not going to be offered chemo until Covid19 has gone on its way. Strange to think the virus is influencing my treatment. 

Best wishes

Sarah

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Member

Re: Tamoxifen how well tolerated

Dear Evie

I want to thank you so much as that was just such a fantastic response to my query that really put my mind at rest. Not only were you my age and premenopausal also but your comment about people only posting when something goes wrong is so sensible. I hadn't really thought of that and it has helped me greatly as I was reading some horror stories about Tamoxifen. Incidentally I have been researching and want to take Indole 3 carbinol and also want to research into the Oncotype DX test. I don't know whether it's because of Covid19 that I am getting little help from the professionals but I do feel on my own and needing to be up with all the modern techniques as the doctors don't seem interested. I had a 2pm call booked today to give my full pathology results and the oncologist just never called. Nothing! So will have to chase that up tomorrow. Anyway, Evie thanks as your reply did help me and I appreciate you taking the time. Did you have radiation or chemo and how were they. I am learning a new language here from scratch. 

Best wishes Sarah

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Re: Tamoxifen how well tolerated

Hi Sarah

First of all, a big hug to you as you go through all this treatment.

 

I have been taking Tamoxifen since June 2017 and touch wood all is ok, just some hot flushes. I too took mine during radiotherapy. I am also 52, I was pre menopausal when I started taking Tamoxifen and am continuing with it even though I'm now post menopausal.

 

You have to remember that if you google or read posts on this forum you will get a slightly distorted view of side effects - because mostly people only post if there is an issue/problem, it is more unusual for someone to come on and post that all is well. That isn't a criticism of forums, but is the nature of them.

 

Also you have to remember that the leaflet has to list all side effects, but it doesn't mean you will get them.  Jill makes a good point that some people find different brands suit them better than others - my doctor doesn't believe the brand can make a difference but it does for many people.

 

Best wishes to you as you go forward, and I'm happy to chat more or answer any questions.

Evie xx

 

 

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Re: Tamoxifen how well tolerated

Hello Sarah

 

Im 40, been on tamoxifen since dec 2019, they started me the same week my radiotherapy started.

 

I can honestly say I was very worried about side effects but apart from some hot flushes at night I have none. The flushes are also affected by the chemo as it battered my ovaries so Im due to have my bloods checked in aug to see if Im pre or post menopausal.

 

I also have lots of friends who have tolerated tamoxifen fine and none of us have had any hair thinning or other issues so far 

 

Thinking of you

Helly xx

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Community Champion

Re: Tamoxifen how well tolerated

Hi Sarah ,I tolerated Tamoxifen quite well I had hot flushes and some hair thinning but nothing dramatic but everyone is different and some people find different brands of tamoxifen effect them more than others in terms of side effects .You can take hormone therapy whilst having radiotherapy. 

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Member

Tamoxifen how well tolerated

Hi all

I am ER+ with positive nodes and had my Mx and Ax 13 days ago (don't get me started on seromas!). It is looking like I will be put on hormone therapy and I'm guessing tamoxifen (I'm 52 but premenopausal) and I was wondering if I will have awful side effects on it. Also can it be taken at the same time as radiation? I know they are going to want to delay chemo until the coronavirus has passed for obvs reasons. All very scary indeed. I am keen to do hormone therapy and some sites even say that it is as effective as chemo!?

Any advice appreciated.

I'm based near Windsor.

Sarah x