I’ve been taking tamoxifen for 8 weeks now but have not experienced any hot flushes or night sweats. I had an appointment with the BC nurse this week and she confirmed that this indicated that the tamoxifen was not working so effectively (I hoped this was just a myth!). My questions are:
- I understand some folk are tamoxifen resistant - but is there any test to confirm this?
- Do I have any other options?
My cancer was grade 3, HER-ve, ER+ve, no node involvement but I’m only 43 so pre menopausal. My next visit to the onc is not for another 8 weeks and I’d like to be prepared.
Hi Arrangirl
Whilst you wait for the other forum users to reply with their experiences
may I suggest you give the BCC helpline a call. Here you can talk through your questions and concerns with one of the trained members of staff who will offer you support and information. The number to call is 0808 800 6000 and the lines are open until 2pm today and 9 to 5pm Monday to Friday.
I hope this helps.
Kind regards
Sam (BCC Facilitator)
Hi Arrangirl,
I was just surfing the web looking for some info on Tamoxifen and I found this article on the breastcancer.org site. I had read your thread this morning and I thought of you…not sure if it’ll help…
Fiona xx
Abnormal CYP2D6 enzyme: About 10% of people have a CYP2D6 enzyme that doesn’t function as well as it should. Having an abnormal CYP2D6 enzyme might keep a person from getting the full benefit of tamoxifen. Ask your doctor about being tested for this enzyme abnormality if you are seriously considering taking tamoxifen.
Medicines to avoid while taking tamoxifen
In the list below, the medications under the headings “Strong Inhibitors” and “Moderate Inhibitors” can inhibit CYP2D6 and interfere with the effectiveness of tamoxifen. The medications under the heading “Not Inhibitors” do not block the CYP2D6 enzyme and will not interfere with tamoxifen treatment.
This list is incomplete and subject to change over time. Use it as a starting place and ask your doctor if any medications you are taking or that are recommended to you are compatible with tamoxifen.
Strong Inhibitors
Generic Names Brand Names
Bupropion Wellbutrin
Fluoxetine Prozac
Paroxetine Paxil
Quinidine Cardioquin
Moderate Inhibitors
Generic Names Brand Names
Duloxetine Cymbalta
Sertraline Zoloft
Diphenhydramine Benadryl
Thioridazine Mellaril
Amiodarone Cordarone
Trazodone Desyrel
Cimetidine Tagamet
SSRIs and SNRIs That Are Not Inhibitors
Generic Names Brand Names
Venlavaxine Effexor
Citalopram Celexa
Escitalopram Lexapro
I asked my onc about this one ad he told me that the amount of side effects makes no difference to whether it works.
Also, my flushes didnt start til I had been on tamox for 3 months and i am told it takes that long to fully get into your system.
There seems to be several thoughts about why tamoxifen doesn’t work for some people. This recent article suggests it could be linked to the FGFR1 gene:
news.bbc.co.uk/1/hi/health/8530305.stm
but I’ve seen other articles cite other possible explanations.
This article springerlink.com/content/x476748h8m746170/ seems to support the link between flushing and effectiveness.
Lolly73 - one of my friends told me the flushes may take a couple of months to kick in but the BC nurse said I’d be getting them by now. Never thought I’d be wishing for them - it’s a strange world!
I’ll see what the onc says. The only alternative seems to be ovarian ablation but I’d prefer to know whether the tamoxifen was working one way or another before heading down that route.
Hi, I’ve been on Tamoxifen since mid Dec, 09. Not experiencing much side effects either.
I wasn’t very convinced about the effectiveness from the start and have raised the issued a few times with my onc.
Feemac: I’ve asked my onc about the CYP2D6 enzyme and he said that because I’m strongly ER+ and PR+, even if mine is abnormal, he’d still give me Tamoxifen to give it a try.
I was asked to stick with it for at least 3 months because hormonal drugs take some time to settle down. But at the back of my mind, there’s is still this doubt. Anyway, my onc did assure me in the end that there are still lots of other hormonal drugs to try before the last option of going back on chemo.
Take care
Even if you have ovaries removed (as i have) you will still need to take tamoxifen or similar.
MY Onc also tells me that the amount of side effects makes no difference to whether Tamoxifen works or not, like all drugs SEs will be different for everyone i suspect .
This is from the Macmillan website.
Each person’s reaction to any medication is different, and it is impossible to predict who is going to have side effects. Many women who take tamoxifen have no side effects, while others will experience them.
Ive been on Tamoxifen for over 2 years now with very few side effects at all so am quite pleased lol, ive never doubted that it may not be working ,so far so good.
If you are worried though i would talk to your oncoligist with your concerns.
All the best
Linda
I am 32 and Ive been on tamoxifen for 3 mths and have no side effects at all. Every drug ive ever been given has never given me side effects so i assume its just me.
I cant believe its just not working and my onc didnt seem worried?
S
X
Hello Ladies
I’ve been told I will be starting Tamoxifen once I finish chemo and Rads. I’ve read whatever I can find, and also spoken to GP because of a few concerns I had - his response was ‘most of his ladies on Tamoxifen do not have too many side effects and the benefit for someone pre-menopausal (I’m 45, had hysterectomy 3 years ago but no ovary removal) far outweighs the risks with regards to bc recurrence’. My neighbour had bc 12 years ago - mx, rads then Tamoxifen for 5 years and her only side effect was a bad taste in her mouth!.
Arrangirl - like you I am/was grade 3, ER+ve, HER-ve with no node involvement - I’ve got 1 more chemo to go then Rads (? 18 sessions TBC) and the commencement of Tamoxifen. I will ask about the CYP2D6 enzyme test at my next Onc appointment though as it appears unless we ask about stuff GP’s and Doctors etc do not offer this sort of information freely like so many other things I’ve discovered on this ‘journey’. My Chemo Nurse also said that ovary ablation is now an outdated procedure that is not undertaken that often anymore as hormone therapy is the best possible treatment for women like us. I’d be interested to hear from any ladies re. their experiences whilst taking Tamoxifen.
Leigh x
Hi Leigh,
Like you and Arrangirl I also had a grade 3 IDC ,HER2- ER/PR+ no Nodes or Vascular invasion, and as i said have had very few SEs on Tamoxifen.
There are many people who do not have many SEs on Tamoxifen and i think we need to remember that people only post when they have problems with a particular treatment and we dont very often hear of those who are doing well on a drug as there is no need to post.
I know a lady in her 80s who was DX 8 yrs ago and her only treatment due to other heath conditions and her age is Tamoxifen, it has in that time considerably shrunk her tumour and has kept the desease stable and she too has had few SEs from taking the drug.
Im not sure why some drugs work for some people while for others they dont ,i quess its the same as chemos working for some and not for others or any other drug for that matter, its proberly a combination of many different factors, but i certainly dont believe that haveing SEs or the lack of SEs has any bearing on its effectivness.
Try to not worry too much about starting Tamoxifen,as the chances are that you will be absolutely fine on it , it realy is a very good drug and is still considered by many oncoligists as the Gold Standard for ER/PR+ Cancer.
All the best to everyone
Take Care
Linda
I’m another side effectless person…been taking it since last April and have had no side effects whatsoever, my onc said I should rejoice ! Just keeping fingers crossed that it is actually working.
Sandra x
no side effects for me either -tamoxifen since September 09
Tamoxifen since June 2009 and has initial night sweats but they disappeared after a while. SE left with is joint pain, joint stiffness in ankles and hands, face rash and itchy skin.
I think it could depend on age etc., I was post menopausal so when I took Tamoxifen first I got hot flushes again! After three months all should settle and the SE your left with could also change after a period of time. Mine are severe but I want to persevere with the Tam.
Interesting thread as we dont know enough about this drug. Lets keep it going long enough to find out.
Good luck everyone.
Hi,
when you read about people who switch brands of tamoxifen tablets you find that many go from overwhelming side effects to hardly any or none as soon as they switch brands. All these tablets contain the same amount of the drug and it seems to be agreed that it is the coating and other ingredients that cause the side effects. I can’t see how one make of tablet would work and another not on the same person. So I hope this brings a little relief to anyone who is doubting whether it is working for them.It is the most successful drug I read. If you have just started I would say wait and see what you are like in the summer when it is much warmer, thats the big test.
Good luck everyone
Lily x
Totally agree with you Lily , it is the bulking agents in the different brands of drugs which cause most of the SEs , Im on APS brand but on the 2 occasions that i couldnt get APS and had CP pharmacuieticals SEs were significantly worse for me.
I think in this age of the internet and all the research we all naturaly do,it ends up giveing us confusing or conflicting new worries, and i think at the end of the day we have to trust our med team with whatever treatment they reccomend for us as they are the experts in treating our cancers.
All the best to you all
Linda
Hi Ladies,
I am new to this site.Was diagnosed in Dec 09 grade 1. Had 4wks of rad and am tacking Tam and have monthly injections of zoladex.
Only had a few hot flashes but take 1000mg of evening primrose oil every day.
The last two weeks however, I have started to get leg cramps and my feet are killing me, I feel like an old woman. Have started to drink bitter lemon with quinine as the quinine is supposed to help the cramps and so far I think it might be working.
Interesting to hear about the different brands though,mine come from CP also.
sla66 xx
Hi
I am on Tamoxifen (55 days now - APS brand) and do have night flushes (since day 10 - I’m 45 and was pre-menopausal though chemo appears to have stopped ovaries at No.4.) The flushes are pretty mild and no where near as bad as I have heard some women get. However I to, have had leg cramps since starting 55 days ago and when I saw my GP about them, the list he brought up on his computer about the side effects Tamoxifen can induce was vast!!!
We had a long conversation about Tamoxifen and my GP said that sometimes it is very easy to presume hot flushes indicate its effectiveness when in fact there are many other side effects experienced that are Tamoxifen induced but are not interpreted to be the Tamoxifen working for some women. Indeed my next door neighbour was diagnosed with BC 12 years ago (she was 48 at the time and pre-menopausal), underwent mastectomy, rads and Tamoxifen for 6 years and her only side effect was a metal taste in the mouth. She has been cancer free (so far) since and is the picture of health.
It is a worry to know if it is working or not and I feel sure different brands also play a part in the side effects experienced so maybe trying different brands may help. Try not to worry to much either as this is not a good thing for us either:)
x
most people dont get side effects from drugs… that doesnt mean they arent working it just means your very lucky… im surprised a BCN would come out with such a flippant statement which isnt based on any evidence.
tamoxifen may not work in people with oestrogen receptor poor disease so thats people who have an er of say 2-4.
we are all individuals and experience different side effects… the ones that they tell you about are the most common ones… eg the hot flushes… i dont get them from tamoxifen… but i do get them from the menopausal symptoms iv had since i had chemo.
the side effects i get from the tamoxifen are dehydration effects… dry mouth, dry skin, dry eyes, constipation etc.
i would say if you can tolerate it keep going… especially if you have no SEs as the benefits out weight the risks.
i think most people on here would agree that hot flushes and constipation would be a better option than another breast cancer.
take care
Lx
I agree, side effects are better than cancer but the pain in my foot tonight is verging on the unbearably. I feel like my bones are broken and I have to hobble around. Will be going to the docs tomorrow to try another brand and will let you all know.
Sla66 x