Tamoxifen

I need some advice after my appointment with my oncologist yesterday.
I have been having really bad aches & pains, dryness etc after starting Tamoxifen. Yesterday I spoke to my oncologist about it yesterday. I have been told I have 97% chance of cancer not returning within 10 years without Tamoxifen and 98% with Tamoxifen. Totally confused 1% difference for my life being turned upside down with this drug. I really thought it was a major % difference & that was why I had ben put on it. He told me to keep on it aslong as I could but basically it wouldn’t make much difference if I came off of it as it was ruining my quality of life. Any advice? Has anyone else been told that it only makes this small difference in your chances of it returning? Would be interested in others opinions. Thanks Lisa xx

hi there,

i have only just started tamoxifen last week, and waiting to see what side affects are going to appear.

1% does seem low. i suppose it depends on the lump you had. i havent seen my onc yet, my consultant surgeon just persribed it so i will find out the ins and outs of it when i see onc. can i ask what grade and size your lump was etc and other treatment you have had? maybe this has bearing on how much tamoxifen will benefit you i am guessing.

TTM

Hi Lisa

I think it depends on how receptive tumor is to eostrogen if highly eostrogen + then predicted good response. I agree that 1% sounds intriuging need to ask ONC or breast care nurse may be able to help

Love Poppy x

I think it comes down to what amount of risk are you personally happy with.

I started on Tamoxifen last August and struggled through to October but had such horrendous side effects, including feeling suicidal which is not at all.

Against my onc’s advise I stopped taking it and having also finished my Herceptin am starting to feel great again.

My stats were 91% without Tamox and 96% with. Now personally for me that is a risk worth taking BUT only you can make that decision.

My onc’s view is that I haven’t finished the prescribed treatment, but she basically has a list and she exepects all her patients to complete everything on the list, no discussion and no excuses. But for me quality of life is important, I am only young for goodness sake and for 5% am not prepared to feel suicidal for 5 years.

For me having had chemo, surgery, rads and Herceptin. No node involvement, I feel that the treatment I have had so far goes a long way to prevent recurrence.

The most important thing is that if I were to have a recurrence I can honestly say I wouldn’t blame not having Tamoxifen, it will be just one of those things.

Sam

I agree with sam.
Tamoxifen for me was terrible and much against the oncologists wishes i started to reduced my dose to three a week and then stopped it totally in january. My stats showed a 5% benefit too. Im 34 now, with two small children and altho i have everything to live for and i dread a re occurance, weighing it all up i chose to stop tamoxifen. I had joint pain, fatigue, couldnt bend my knees properly, dry everthing, mood swings,painful hideous periods, no sex drive, water retention, foggy brain…i could go on.All classed as minor SE by oncologists.

I took it for a good 20 mths and in that time i even quit my job as i couldnt cope with it. The fatigue was just ridiculous.

Now ive lost 2st, feel fit and well and have started back at work part time.

S

hi
. iam 3 weeks into the 5 year course of tamoxifen, and feel its taken over my body, hot flushes, pins and needles in legs, but worst of all i seem not to care about anything, havent left the house for a week, my OH now comes home at lunch time, he only gets half hr, think he is worried its made me feel sooooo low, everything is a huge effort, wonder if this will pass as its only been 3 weeks, yesterday was shocked, as i slept for nearly 5 hrs, then went to bed at 9pm and woke at 6am.Thought it would be easy now after the ops, chemo, RT,Never ever felt this low going thro all that, but now,i dont know, feel everything about me has gone. RANT RANT RANT.

GP what you are feeling is normal. i found the first year after everything ended difficult as everyone feels its done and dusted and your body and mind dont agree! Its a form of post traumatic stress. Sleep if you can and dont be too hard on yourself.

s

Hi Evie,just wanted to say hello,really pleased your doing well xxxx

Hi TTM,
I had a WLE with sentinel lymph node removal. Then 4 weeks of rads (3 to whole breast & 1 week to tumour site). Started Tamoxifen in December for 5 years. Grade was 1 & Stage was 1 & it hadn’t spread to lymph nodes. Type was invasive carcinoma.
I have been awful since taking the tablets. At the beginning felt very sick, constant thirst & dryness all over. Nausea now eased but dryness awful ie eyes contact lenses & down there lol & hot flushes I can handle. But the aches are awful I feel like an old lady & can’t remember waking up without aches & pains (mostly in back, arms & legs).
This percentage came from the oncologist so he must know what his talking about. But it seems that if it is only giving me a 1% difference for all the side effects is it really worth it. I don’t know what to do but suppose its still early days.
Hope your treatment etc goes well.
Lisa xx

Hi Poppy,
It was my oncologist that told me as I had been feeling so ill since starting taking it in December. I really didn’t know in my case it was such a small percentage. He did say to keep on it as long as I could & if not come off of it. Obviously I want to make sure it doesn’t come back but 1% seems so low for feeling so ill & the fact the Tamoxifen can cause other cancer & womb problems etc.
Thanks for your comments.
Hope all well with you
Love Lisa xx

Hi Sam, Evie,
Thanks for your comments. It is nice to hear others experiences & nice to know its not just me that feels with Tamoxifen. I agree it is about quality of life too & when you are young these changes can cause havoc on top of everything else. I know people may say well 1% is 1% but it still seems very low risk for all the side effects i’m experiencing.
Love Lisa xx

Hi GP,
Thank you for your comments. Hope things get better soon for uou.
Love Lisa xx

hi drabble! thanks for remembering me! hope you are well?

This weekend i feel really guilty about stopping tamoxifen but just keep looking at the packet and thinking i dont want to take you!!

Why cant they design something that didnt have a bucket load of SE. I couldnt stand the awful aches and dryness the most.

S

hi there,

maybe you could change brands of tamoxifen and see if that improve things a bit for you. i know have read on another thread about there being 3 brands of tamoxifen and some seem to suit some people but not others. i have got wockhardt. like i say only just started on it so early days. only got 30 tablets from hospital and then have to get my repeat perscriptions from GP. have rang surgery yesterday to make sure they have got info through. receptionist said if i find a certain brands suits me better they will put the actual brand name on perscription and then chemist has to give you that brand. she seemed to think wockhardt suited a lot of ladies, but have read a few on here who it doesnt, so we shall see.

sorry to waffle but like i say it might be worth swapping and see if things improve. also publication i got given to read about it does say takes a good few months sometimes to settle maybe upto a year!.

hope things get better TTM

hi all

Diagnosed Jan 2011 thought ok I can get through this
i had mx March 2011 no problems carried on as normal
Chemo finished Oct 2011 got through that fine no SE carried on as normal
Started Tamoxifen Oct 2011 fine no SE
March 2011 can’t seem to deal with things want to run and hide.
Daughter 13 and son 9 keeping me from running.
Is this a SE of Tamoxifen? Can’t think straight.
Rambling mind all over the place.

Hi there - I stopped taking Tamoxifen last Sept. Had been taking it for 2 years, but absolutely hated the intense menopausal symptoms (I’m 53)and also the lack of focus I seemed to have experienced since taking it. The Onc. agreed with me that I was low risk (stage 1, grade 1 invasive) and that it was just belt & braces after radiotherapy and surgery. I’m glad I came off it - feel a little bit like I’ve got my life back!

That said, I’m on these forums because I’ve had a surprise bleed and from the posts I’ve read it seems that tamoxifen can also thicken the lining of the uterus and cause polyps - waiting for a scan appt to have it checked out…My assumption is that thre’s a hormonal upset again when I came off tamoxifen.

I’ve been taking Tamoxifen for just over a year, just recently i’ve been extremely irratable, snapping at anything and everything. I spoke to my doctor to see if there is anything I can take to relieve the mood swings (caused by Tamoxifen) she suggested ST Johns Wort. Having research SJW, I have found that it can interfere with Tamoxifen, I have mentioned this to my doctor, however she says research says it’s very effective, and that it’s up to me if I take it??!!!
Can anyone suggest anything I take do or take, I do not like the person i’m turning into, and to think i’ve got another 4 years of this, is there life after Tamoxifen.

Hi Juddyduddy,

This is exactly why I wonder if it is worth me staying on this awful tablet for 1%. I have booked an appointment to see my doctor as emotionally i’m a mess. The other night I was having seriously silly thoughts & really didn’t know why. It got that bad I sat in front of the computer looking at the Samaritans website. I am usually a bubbly outgoing person who now has turned into someone I don’t know anymore. I can’t think straight & do some really silly things, my memory is awful & ache all over. I try to keep going & make out all okay but as soon as i’m on my own that’s it. I sit at work & just want to burst into tears somedays. I know its probably depression but really don’t want to go on to anti depressants. Anyone think if this linked to Tamoxifen or is it just the cancer diagnosis etc in general. Would appretiate any advice.
Love Lisa xx

Hi Lisa

I am sorry to read that you are having such a difficult time and wanted to suggest that you give our helpliners a call for further support, the lines are open 9-5 during the week and 9-2 Saturdays and they will provide a ‘listening ear’ and you can talk about how you are feeling with someone in confidence.

Please feel free to call on 0808 800 6000

Take care
Lucy

Hi Lisa,

I have been on Tamxoifen for 2 months now and halfway through rads. I am forever breaking down in the most embarrasing places and I just cant stop - I do believe its the tablets - I take APS. I am usually a laughing bubbly person also but now I feel like the wicked witch of the west ! I am now off work for 6 weeks and I just want to be n my own all he time and hubby is just about coping with me. I had grade 2 invasive with no node involvement so when I go back to see my onc in May I will also be asking the % rate. I am considering throwing them away as on top of the shock I really cant deal with this for the next 5 years !!! I ache all over and feel dizzy I have sort of puffed up and all my cloths are tight as well !

I am envious of the women that dont get the SE but on a positive note the sun is shining !!!

Good luck and keep me posted.

xx