Just had enough of the drugs!!

Ah u poor pet. Sent u a private message

My heart goes out to you and I can well understanding you wanting to get back to some kind of normal life. If tamoxifen only reduces the risk by 5% I think I would say the same, I don't want it, especially as it affects you so badly. Have a serious talk with your doctors/nurses and ont let them talk you into continuing if you don't want. My father was convinced in to avian chemo although his tumour was removed and he was cancer free. They told him his risk of it returning would be reduced from 70% to 20% so he went for it although I had said he shouldn't. Two years on from finishing he has severe pins and needles in his hands and feet from the chemo and his quality of life is crap. So ont let them tell you they're doing for your own good as he'd have been better not having it at all. Dreadful to end your years like that and there is no improvement or will there be. I wish you well in whatever you decide.

My heart goes out to you and I can well understanding you wanting to get back to some kind of normal life. If tamoxifen only reduces the risk by 5% I think I would say the same, I don't want it, especially as it affects you so badly. Have a serious talk with your doctors/nurses and ont let them talk you into continuing if you don't want. My father was convinced in to avian chemo although his tumour was removed and he was cancer free. They told him his risk of it returning would be reduced from 70% to 20% so he went for it although I had said he shouldn't. Two years on from finishing he has severe pins and needles in his hands and feet from the chemo and his quality of life is crap. So ont let them tell you they're doing for your own good as he'd have been better not having it at all. Dreadful to end your years like that and there is no improvement or will there be. I wish you well in whatever you decide.

Thanks Wicklow lady, I do think quality of life has to be a big part of the decision and I do feel the medical team just go by the book and not the person sometimes. Sorry if my post was a bit of a rant, I am in ranting mood. Thanks for the input!! Xx

Oh rant away that's what we're here for. Yes I agree its all about curing and keeping it away and blasting you till kingdom come and feck the consequences but you have to have quality of life or there's no point in living

I can relate to what you're saying!
I'm having a few side effects on the lovely tamoxifen and would dearly love to come off it, having only been on it for 2.5 months! I've been turned into an old woman and not liking it one little bit!!

I'd ask your onc about coming off it. I think we have the same one and they wouldn't have you suffering needlessly on it?? Was your tumor strongly er+? ( mine was) that would be another weighing up factor in your decision?? But get in touch with the powers that be- you shouldn't be feeling like that after going through the crap of active treatment.

Let us know how you get on- it'll arm me with a bit more knowledge when I've got my appt in October!!!

Xx

Ania

My heart goes out to you. No one deserves what you have been through but especially not at 28 when you are only starting out in life. I think they tend to throw the kitchen sink at it in Ireland to ensure we have the best chance of it not coming back but that comes at a cost of all those side effects. Perhaps there is something else you can take or maybe as you say quality of life is more important. Certainly talking you your team can't hurt and maybe finding out what care is given in other countries e.g. Australia for the kind of cancer you had. Once your recon is over you will be there so it would be interesting to know what they would make of your situation. You might need to do a bit of research and get a recommendation as to the best oncologist to care for you over there.

Where are you doing your recon by the way? and who is doing it for you?

All the very best.
Dane

Hi there, have not been on this form for about a year so just came on there and saw your post. I'm just wondering what did you decide in the end?
I did tamoxifen for 10 mths and had enough! I never felt so toxic in my life!!! Not only was the 5/10% protection against recurrence that was off putting but the fact that its a well documented carcinogen with regards to greatly increasing a woman's chance of getting uterine cancer. Chemo and radiation is already well documented as being a major carcinogen so by the time I was on tamoxifen I reckon I had enough carcinogenic crap in my body including the cancer!! After much research I came to believe that changing diet and lifestyle had a 40% reduced risk of recurrence so this made more sense to me and it meant I got to be responsible and more involved in my well being. I take no pharma meds now and after much detoxification routines I am feeling so much healthier than I ever have in my life. I hope whatever you have decided is working well for you and should you ever wish to contact me I would be happy to share some well documented scientific nutritional research with you. You are truely amazing for a young lady your age to question all these supposedly wonderful treatments, keep looking for answers x x xquote="Ania"]Ladies, I desperately need your advice cos no one else understands!! I am 12 months into my cancer treatment, had chemo, surgery, rads and tamoxifen and I have just had enough! I'm done.

I have had severe reactions consistently throughout my treatment and because I was so young I was just told I was stressed out. During chemo at varying stages I lost the ability to speak and walk, my head has been melted from all the drugs and I am just not able to make decisions, or be independent essentially, my head is just so badly fogged from everything. Anyway tamoxifen was suppose to be my last treatment, I was on it and due to severe reactions it was stopped for 6 wks and I felt great, then tried it again and only lasted 4 wks on it and my tremor came back (started with chemo but faded slowly after 6months) so it has now been stopped again. I just can't take it anymore, I seem to be really sensitive to drugs and no matter what, I suffer side effects. I just want to be normal and get back to some sort of life but I can't do that on drugs.

I am going to tell my oncologist I have had enough and am refusing further treatment cos I can't take it anymore. I have had to give up my life for the last yr and am still waiting for final reconstruction in early oct but then I am off to aus to start again.

As far as I am aware the tamoxifen reduces my personal risk of reoccurrence from 15% to 10% which I personally think is useless to me cos if u get cancer in ur 20's there is no way I will get a forty year free pass, if its going to come back it will and I have a tried everything to give myself the best chance but enough is enough!

Ye know the pains associated with all the different medications and know that it's not easyi would like to hear your thought before I make radical decisions, any advice really appreciated!!!![/quote]

Hi
Thought I'd throw my tupense worth in!!!!I did the tamoxifen for a year and then partly changed due to side effects but also as I had become post menopausal,so am now on femara for the last 6 months.Am in on Monday for review and am armed and ready for them.the joint and bone pain is just at the unbearable stage I'm so tired and worn out from the pain.I also have a swelling on my neck along the collar bone which I'm hoping is down to the pain in shoulder.pain killers don't work and have just tried a pain patch which also was no use,so like you I think I'm going to call it a day with the femara no way I can do another 4 years of this!!!
Its really unfortunate as these are the only side effects to otherwise a great drug.

Hope you got on OK with your once
When are you off to aus?

Xx w

Hi ladies,
Yeah I went in armed to quit but my oncologist had got there on her own. She said due to my side effects it wasn't worth continuing with tamoxifen and she was hesitant to try anything else, because the only other thing was an injection and side effects if any could last up to 6months to wash out of my system. At least with tamoxifen side effects subside fairly fast once you stop taking them.

So I am officially drug free and feeling better everyday. I miss my memory though, no sign of that coming back, but sacrifices were made.

I dunno, she said I needed a bit of luck now, but you can't buy that. I had herceptin for a year, radiation, chemo, radical surgery and 4 months of tamoxifen, so hopefully that'll be enough to stem it for a few years, let me get back to living my life, but I feel likes its 50/50, it'll either come back or it won't. I have to have an MRI every year for the next 5yrs. But there is nothing I can do to catch it early again, so if it comes back it'll be most likely too far gone to do anything about. So I am just going to keep living like I always was, making the best of everything with a positive attitude.

I am heading back to Perth in January regardless, I just need to get away from as here anyway and a bit of sunshine will do me the world of good!

Wishing you all the very best of luck and then some more Ania. Please God you will get the break you need and deserve!!! Live that life in Australia and enjoy every moment.

Dane

Hi,

Just to say that I agree with Neadi on this subject.

We definitely need to discuss coming off Tamoxifen with our doctors. The statistics all show that "in general" the ER+ ladies who take their Tamoxifen for at least 5 years do better in terms of disease free survival and overall lower mortality. Some of us are at higher risk than others. The bigger the tumour and the more lymph nodes affected in the initial diagnosis, the higher the risk.

I promise that I am not trying to scare anyone, but just to state that coming off the drugs is simply not a decision to be taken lightly. Nor a decision to take without expert medical advice.

On this site most of us are doing pretty well on the breast cancer threads. There are very few posts from ladies with recurrences or mets. When I read the heartbreaking posts on other sites, and meet friends who are living with mets and advanced cancer, I feel that I need to do everything I can to lower the risk of getting cancer again.

Spage brought up the subject of diet and lifestyle. To be more specific it is actually physical activity that reduces the risk of occurrence and recurrence by 40 percent.

A month ago my radiotherapy oncologist suggested that I stop Tamoxifen for a month to see if the flaky skin problem I have is being caused by Tamoxifen. The idea was to go to Aromasin instead if the problem went away. I had been taking Tamoxifen for 16 months.

A month ago I had the following problems that I thought were part of the joys of Tamoxifen:
- hot flushes
- nocturnal cramps in my feet, calves and thighs
- disturbed sleep
- flaky patches on my arms, legs and recently on my face too
- 4 kg weight gain since last year, but stable for several months now

Her suggestion of a month of freedom from all of that was music to my ears.

Guess what ladies - not one of those symptoms has gone away. The skin problem is probably psoriasis and totally unrelated but needs to be confirmed when I see a dermatologist. The rest is the menopause I guess.

So I'm back on Tamoxifen on Friday.

All the best for your Australian adventures Ania and good health to all.

Kath