Hello ladies,
I have recently moved to the UK and had my first appointment with the GP. She questioned the dosage of tamoxifen that I had been prescribed by my oncologist - she seems to think 10mg is the daily dose and I have been put on 20mg. I had mastectomy for DCIS so theoretically tamoxifen is for prevention of recurrence in the other breast.
I thought I had all the research done but this has confused me…
Thanks.
Love,
J
Hi J,
I am on 20 mg once daily. This is also the dose this it says on the info sheet that is in the box with the tamoxifen. I also had a mastectomy (had dcis and tumour).
Hope this is of any help.
love Dutchy
I’ve just been prescribed 20mg per day too, though not taking it til after Christmas as need to shake off last dose of chemo first. Mine’s for a liver secondary, and any other little blighters that got through the net!
Jacquie
yeah 20mg here too.
Welcome to the Uk hope your settling in ok. Where are you from?
Ruthie x
Thank you ladies, I feel better now. Didn’t fancy overdosing.
Ruthie, I am Croatian (not going to be very popular this evening I’m afraid) but had lived in Italy for most of my adult life. I was diagnosed at the end of a sabbatical period in Croatia, just as I was preparing to move to the UK. However, I made it here in the end - it feels good to be able to pick up where one left off. And I’m feeling very much at home already.
Love
J
Hello Bubica
Welcome to the site. In one of your posts, you mentioned you were on Nolvadex but were going on generic. Do you mind me asking why? It’s just that over here, we usually do it the other way. Not that it matters at all as it’s all Tamoxifen it’s just that most of us have to fight for Nolvadex.
Love
Debbie
Hi Debbie,
& thank you. In Croatia I was immediately given Nolvadex (I do not think generic Tamoxifen is available). The generic brand was prescribed to me by the GP here, and I am a bit worried about side effects which so far I have not had. She did, however, say that she would give me Nolvadex if side effects showed up on changing to generic tamoxifen. Anyway, I’ll post my experience here, in case it is of help to anyone.
Love
J
Hi Bubica
The only problem I have found with generic tamoxifen is that you cannot guarantee getting it from the same manufacturer and cannot specify which one you want like you can with Nolvadex. I am using up the last of cp pharmacuticals before I go on the nolvadex I have got and find this brand ok but might not be able to get it next time. I might find that Nolvadex doesn’t suit me so will go back on generic but it is nice to finally have the choice
Love
Debbie
Hi, Have read the last few posts with interest. can someone explain the difference between Nolvadex and tamoxifen? I am pre menopausal and have been on tamoxifen for 11 months following mastecomy, and was told that I would have to take it for 2 years before it would be changed, I wasnt offered anything different, should I be asking for Nolvadex?
love Debs
No Debs
Nolvadex is supposed to be Tamoxifen without too many bulking agents that you find in generic tamoxifen ie CP Pharmaceuticals and APS etc. Some women find that they have fewer side effects on Nolvadex than generic tamoxifen. That said, the male doctors at my surgery and the male consultants/registrars I see, point blank refuse to accept that there is a difference and refused to prescribe it to me even though the bc nurse was sitting there saying that a change might help. I have been angry over this for over a year now. The same male medics say that Tamoxifen cannot cause cramps and muscle pain which is rubbish. If you suddenly get these things after starting Tamoxifen when you have never had them before, how can they say this?
Debbie
xxx
Hi Debbie,
I was rather upset after reading about your male doctors’ attitude, so I dug out a few things that link Tamoxifen to muscle cramps. Hope they’ll be of some use. If you check some older threads on the subject, there are suggestions on how to deal with the cramps.
From an article on menopause: ‘as estrogen levels drop during menopause, magnesium levels seem to diminish as well’ (quoted from umm.edu/altmed/articles/menopause-000107.htm). Tamoxifen depletes the body of estrogen. Magnesium depletion is known to cause muscle cramps.
From a scientific article: (jama.ama-assn.org/cgi/content/full/295/23/2742)
“The increase in leg cramps among participants treated with tamoxifen vs those treated with raloxifene was an unexpected finding. Leg cramps were associated with raloxifene in the MORE study and in the Lilly pooled analysis.4, 35 However, we found no prior reports linking leg cramps with tamoxifen. For example, the 1995 Physician’s Desk Reference (PDR) did not list leg cramps as an anticipated adverse effect of tamoxifen.39 The BCPT symptom checklist did not include leg cramps, although the consent for that protocol did anticipate leg cramps as a rare adverse effect.”
And finally, from an American breast cancer website:
breastcancer.org/tips/life_quality/ask_expert/2003_05/question_12.jsp
Looks like it’s about time those cramps were included in the already too long list of side effects.
Best wishes,
Jelena
Got a most hideous cramp right after posting. Just wanted to share.
Love J
Hi Jelena
Thank you for that. My latest problems are pain and numbness in jaw and ear and I wonder if that is Tamoxifen related. My wonderful ( female ) dentist has reffered me to the face people at the hosp due to my bc dx " just to be on the safe side ". Don’t think for one moment that a male doctor would have done so I am pleased I went to dentist and not doctors. She thinks I have been grinding my teeth at night and thinks a brace might help. Won’t do anything for my already struggling sex life though.
Hope you are well… Lovely name…
Debbie
xxx
Hi Debbie,
Thanks, that’s very kind - the name’s the slavic version of Helena.
Now, grinding your teeth might just be a side effect of how you feel about your doctors… And while we’re on the subject, my first surgeon earned himself the nickname of McScreamy by being a champion insensitive b******. (I was very much into Grey’s Anatomy in those days… come to think of it, it was the only sex life I got).
Wishing you well
xx Jelena
On the subject of insenitive comments. My list since dx
" You could get knocked down by a bus tomorrow" This was during first consultation with Consultant after core biopsy and he had just told me he thought it was cancer and was made by nurse standing in for bc nurse who was on holiday.
" Don’t forget you have a life threatening disease" Consultant when I asked if there was a solution to hot flushes caused by Tamoxifen.
" I told consultant you were a bit of a challenge " BC nurse after I had wept down the phone to her.
" We are really busy and you will just have to wait". After asking for some pain killers in hospital. The info booklet tells you not to wait until pain is really bad but to ask beforehand.
" There’s been a problem and she is still in theatre " nameless member of staff to my husband when he rang after my WLE. The problem actually was that there wasn’t a porter available to bring me back to the ward.
And lastly to someone else I just heard of. Same staff, same ward, again after surgery. Her husband phoned to ask after her and was told " I’m sorry. we have lost her". Husband and son stopped crying just long enough for someone to explain that they meant they couldn’t find her on the computer.
It beggars belief doesn’t it… then there are all the pitying looks and remarks that it can’t have been that bad as I didn’t need chemo and that I should “move on now”. ARGGGGHHH
Debbie
xx
Hi All.
Debbie what a awful awful list of comments.
The worst for me was the Bc nurse sayin to hubby at my Dx ‘is your wife usually so highly strung’ Then when i told her when she came to my house i had not liked her comment or her very much she said ‘oh the doctor didnt know how to cope’
As hubby said to me 'it was not the doc who couldnt cope it was her. I dont usually hold grudges but i have changed BC nurse since and this one is fab.
The awful Bc nurse also said to me when i was horrified to be told i needed chemo and asked if there was a shorter chemo regime or lighter chemo as i had no glands involved ‘chemotherapy is chemotherapy theres no easier or lesser severe one’
Maybe we should start a thread somewhere called 'Insensitive comments made by ‘Prats’
I get the same tamoxifen from tesco although its written on perscription 56 tabs they give me 30 as i get 2months supply over 6 months thats 24 tabs extra nearly a months supply. Superdrug gave me exactely 56 so wont go there again.
I dont like it but been on it for 16months and used to it. Flushes been better this week.
Rx
.
Hi Debbie & R,
What awful comments. It is tempting to start a new thread, ‘top ten insensitive comments’ or ‘line-up for mr insensitive b****** 2007’, though it might not be a reassuring read for some of the ladies who are just embarking on the journey.
Just to add my bit, McScreamy said to me when I went to complain of breast pain post-surgery: “You are wasting time talking. You could already have taken your shirt off (in the time it took you to describe the pain.)”
Later on I engaged in a proper shouting match with him, and then changed hospitals.
I just wonder how women coped before internet?
Debbie, do you mind me asking what your diagnosis was? I was diagnosed with DCIS and didn’t have to have chemo either.
xxx Jelena
Jelena
That’s awful. The shirt comment I mean. Mine was Invasive ductal. Stage 1, WLE, 7 nodes removed none affected and a sentinel node biopsy. The tumour was originally thought to be grade 1 and 2.8cm but turned out to be grade 2 and 2cm. I was told chemo wasn’t necessary although some ladies with the same size and grade etc seem to have been offered it. I was told that due to my age, 43 at dx, I would have everything they considered necessary so I have to trust that it really wasn’t necessary even though I have spent the best part of a year worrying that they have missed something. I had 15 rads and 4 electron booster rads and Tamoxifen. I started Tamoxifen the day after they got the results from my op. and have been on it now for 13 months.
A year on, I feel much better.
I am going to start that thread you mentioned. Take care
Debbie
xxxxx
Hi Bubica
I have been taking 20mg Tamoxifen since the beginning of Oct and consider myself lucky as no side effects to date. I’m going to go to the same chemist for my tablets each time to make sure I get the same brand.
Can’t believe the insensitive comments some of you ladies have suffered, I think the Dr’s and nurses need to go for sensitivity training before being let loose on patients.
Debbie I had WLE with similar results to you and I was not offered chemo. I have had 15 rads and have 2 of my 3 boosters still to go. Unfortunately skin split yesterday so anxious to finish treatment and heal. I’m happy to hear that a year on you are feeling much better.
Good luck everyone
Caz x
Oh Caz
So sorry about skin split. If you are like me, you will get VERY SORE. I couldn’t bend forwards or move my left arm for the pain. If this happens, and I sincerely hope it doesn’t, make an app to see a dressings nurse at your doctors. I got lots of help from the radiographers I saw but nothing worked. It was over Xmas and I was unable to get a doctor or nurse app. When I told my bc nurse what had happened, she hit the roof and said that the district nurse should have been seeing me daily to dress the wound. It took about 3 weeks to heal to a comfortable degree and before then, it oozed green mucus. The graneodin ointment the onc gave me helped and there was no infection but all the doc did, when I eventually got an app, was give me sticky on dressings. Hopeless when I had no healthy skin to stick it to. The skin turned grey and brown and has left me scarred underneat. Sometimes I have to go braless even now, i year on, as it get uncomfortable. Two months after it healed, I got ringworm which can appear in areas of damp moist or dead skin and can show elsewhere. In my case, my arms and legs. This is easily cleared up with anti fungal cream.
I wish you all the luck in the world and am v sorry if I alarmed you with my comments but I think that if you are warned you can cope.
Have a lovely rads free Xmas
Debbie
xxx