Page 32 | **TAMOXIFEN 35**the all dancing,fat boy snacking and drugs thread

MaryAnnSingleton · 2013-04-26T15:15:06+00:00

yoo hoo - over here- bring the trolley...

malteserzz · 08/05/2013 14:26

Nobody has mentioned tamoxifen or anything to me yet does everyone have it ?
I was on a high yesterday as things seemed manageable, now low again as I've been into work and I just want my old life back
Got some bachs rescue remedy is that ok to use ?

Gigondas · 08/05/2013 14:51

Bachs is fine. I think tamoxifen is dependent on hormone status of the cancer so I guess need to wait on full analysis for that. But as Copt said , it's a well trodden route and doable.

KurriKurri · 08/05/2013 14:55

Hi all,

Asho - hope they wort out the pouchitis at the hopital and Dr W is helpful and doesn't live up to his name

Spero - the main side effects I had were menopausal symptoms, which are a pain but manageable on the whole. Cognitive impairment - well my memory is shit but I'm pretty sure that's a combo of chemo/old age! I found the side effects calmed down after about 6 months and no I would say I don't really have nay at all - but there are other drugs available, not just tamox. so if you don't get on with it, there will be an alternative.

malt - not everyone has tamoxifen - depends on the type of tumour, but you don't usually start it until after other treatment so it may just be that they haven't mentioned it yet. I think rescue remedy is fine - I took it (and still do when necessary)

Ooh - I just clicked something and my font has gone extremely small I have wailed loudly and DD is going to sort it out for me

Waving to Smee on the train, and everyone else. xx
Old lady dog has allowed me to trim her beard with minimal grumbling, so she is looking very pretty

Original poster

MaryAnnSingleton · 08/05/2013 14:57

am sure rescue remedy is fine. Ask your bcn about whether your tumour is ER+ which means sensitive to oestrogen, if so then you'll most probably be offered tamoxifen - it won't have any effect is ER-. I wonder too whether they've tested your HER2 status - if HER2+ then you would be offered herceptin. If you are negative to both (and negative for progesterone as well) then you are triple negative and will have chemo. Does tht make any sense ? BCN should explain it all properly.
spero hot flushes are because the oestrogen is blocked on tamoxifen so you do experience menopausal symptoms- your periods may go and haywire too. Quite frankly tamoxifen wasn't too awful at all- I was dreading it, but the thought much worse than the actual taking of.

OP posts:

amberlight · 08/05/2013 15:07

I think HER2+ status needs at least three weeks to 'brew' before they are able to say if you've got that sort or not. Only 15% of people are HER2+ sort. I am.

So, as the others have outlined, after all the other treatments, if you've got ER+ sort, you'll be offered Tamoxifen eventually as pills once a day for five years. If you've HER2+ sort, you'll be offered Herceptin which is given every three weeks via IV drip (for most people) and carries on for a year.

Bach flower remedy is fine.

Spero · 08/05/2013 15:14

Thanks for all tamoxifen reassurance!

Gigondas · 08/05/2013 15:14

I was going to grab a but for done reason idea of brewing samples put me off .

Which reminds me have I been told but bet amber knows more. Antioxidants ( ESP in green or white tea) are meant to make chemo loads more effective. Both dietician and dr says studies shown t his.

Copthallresident · 08/05/2013 15:21

Sperro I think the effect varies, they don't really fully understand how Tamoxifen works anyway. It throws some people into menopause, others it doesn't. My friend who had an inoffensive tumour has just had an oophorectomy because five years of Tamoxifen didn't stop her periods and then five years after she stopped Tamoxifen she has had a local recurrence which was strongly Oestrogen positive. And actually only one third of women have any menopausal symptoms, it's just they winge enough for everyone .

My periods stopped after the first round of chemo but blood tests whilst on Tamoxifen showed me as peri menopausal with some highs and lows of Oestrogen levels (though all much lower than pre chemo) . I had the odd period too, about every year / 18 months but when they did a vaginal ultrasound to make sure it wasn't anything nasty the ovaries showed no activity. Absolutely no menopausal symptoms until I stopped taking it and then the hot night sweats hit with a vengeance and the joys of my old hibernating sluglike ways under the duvet are a thing of the past

malt They either have or will test your tumour for whether it is Hormone Receptor positive, breast tissue cells have hormone receptors on them because it is their job to respond to hormone signals. Some tumours keep these hormone receptors and hormones stimulate them to divide, so starving them of those hormones is part of the treatment. You can be Estrogen or Progesterone positive or both. They think Tamoxifen acts by mimicking Oestrogen and attaching itself to the tumours hormone receptors and starving it of real Oestrogen. They also test the tumour for a protein called Her 2 Neu which also plays a role in cell division going hyperactive and mutant, which they can now treat with Herceptin.

The doctors will talk this through with you but where I was treated they now are doing trials that are showing hormone therapy alone can be just as effective as chemo / hormone therapy if a tumour is strongly ER /PR positive (you get a grading 1-3 but my tumour was at the very top end of 3) even for one like mine that was aggressive and fast growing, and in the lymph nodes. They are just trying to work out where they put the goal posts in terms of recommending who has chemo as well and who doesn't. The hormone therapy team there is expanding fast and involved in all sorts of exciting trials. However Dr Geek thinks doctors are naturally conservative and are sticking with chemo even in the face of all the evidence that has been emerging. He is referring a lot of patients, including a couple of my friends, to the specialists in hormone therapy.

Copthallresident · 08/05/2013 15:50

Forgot to throw some Reuben's brownies on the trolley for afternoon nibbles. As he passed them to me he said "I will pick the ones with the extra gooey fatty layer justa for you" He knows me so well

gigs just in Waterstones as having helped Little Copt with revision, I am now going to have to understand experience of Colonialism in Africa, some widely tenuous link to my thesis, but mainly need to satisfy curiosity. Underneath was Roman History shelf and I was thinking that following the Pompeii exhibition I would like to do same. I just wondered if you could recommend any good readable books, not especially on Pompeii but something stimulating and interesting that gets to the underlying spirit / truth?

KK Unlike Cancer cells Computers are inherently vindictive and malevolent and out to get you

AshokanFarewell · 08/05/2013 16:11

Hello all,

I've had another sleep so feeling a bit less pathetic.

Dr W rather lived up to his name. He was not at all sympathetic that I have been to the loo more than ten times per night since Sunday and just said it might not calm down until the weekend. His overall message was get on with it he refuses to believe there is any possibility that it is an infection but if it hasn't calmed down tomorrow I'm going to go to the GP instead. Touch wood it is better today anyway, although I now have stomach cramps

Also I now have to decide whether to have the infusion at a lower dose again, maybe 30%, or have just tablets instead for the remaining cycles (three left) he doesn't know whether it is better to have only tablets but complete the cycles or have an infusion and only a few days of tablets. It's quite scary having to decide that for myself :( so if anyone has any insights at all they would be greatly appreciated :)

On the plus side I've sent my dad out in search of macaro(o)ns so will pop some on the trolley when/if they arrive

KK hope your computer is sorted out now. If not try pressing Ctrl and 0 as that usually resets the size :) I'm always accidentally making mine too big or small.

gigs if you think that's gross, I read a book a while ago that recommended maturing your wee for ten days in a jar and then rubbing it all over your body and face as a cure for chronic fatigue

tipsy topsy hope you're enjoying your pj and junk food day? :)

trice I have a CLIC Sargent social worker who I think is the equivalent of a Macmillan nurse. I sometimes find it easier to talk through things with her as she is not emotionally involved. Also she knows all the different organisations and resources available and can point me in the direction of things I need. It might be worth trying a Macmillan nurse at least once just to see what they can offer you :)

Waving to everyone, I hope you're all having a lovely day :)

coorong · 08/05/2013 17:45

Afternoon all - just picked up my tamoxifen prescription so the discussion is very timely. My GP added "vaginal discharge" to the list of side effects ....... Hopefully it won't be too bad. She also talked about tamoxifen blocking the receptor oestrogen sites on any cell in the body. So, cells related to periods etc are also blocked, hence the menopause like symptoms.

Malt, I worked all the way up to my operation (the Friday before a Monday op) it was the best thing because it kept me too busy to dwell.

Ash - sorry your Dr lacks a bit of bedside manor, perhaps he makes up for it in clinical excellence

malteserzz · 08/05/2013 18:00

Am learning all the time from you all so thank you I'm sorry Im not able to contribute much advice back at the minute but hopefully in time I will
Having my coil out tomorrow, I loved my coil
Plan to work for the next 2 weeks then it's half term and my op is the week after. How long do you think I'll need off after a lumpectomy ? I think she said 4 weeks yesterday which sounds a long time ? I teach little ones so quite physical though I'm never on my own in the classroom so wouldn't have to lift etc. Meeting with my head tomorrow and would like to be able to give him some idea of how long I'll be off
Have a nice evening all, apprentice again at 9 !

Spero · 08/05/2013 18:13