71.9K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Tamoxifen Homeopathic Alternative

10 REPLIES 10
Kess
Member

Re: Tamoxifen Homeopathic Alternative

Everyone has to make their own decision and take into account their own circumstances weighing up their recurrence chance against the side effects they are suffering. I would recommend though that if you decide to stop taking it you are honest with your team. It is of course your choice, but it's better if they know what choices you have made....
Cookie17
Member

Re: Tamoxifen Homeopathic Alternative

I was put on Tamoxifen after they took me off Capcitabine.  i coped with it for two years before they had to take me off as my tumours were no longer responding and new ones were developing in my liver.  I am now on Anastrazole.  The side effects I have had have been many, hot flushes, aching joints, pins and needles, nausia, dizzy spells, stiffness and much more.

 

My Oncologist is very good.  I now ensure they know every detail of what I am suffering from.  I have terminal cancer of the breast, spine, liver and lungs. I am in constant pain from a laminectomy done back in 2011 where two vertebrae were crushed due to the tumour compressing on my spine. I know have a fused spine and it is riddled with secondary bone cancer.

 

At times I dont know if I am coming or going but I must have a high pain threshold to deal with what I do.  For those of you suffering with side effects, dont live with them, do tell your Oncologist and push to see if there is an alternative you can use. I have, this year, been on Anastrazole, invasive chemo (two types) and then back on Anastrazole as the invasive chemo was going to kill me off!  They promise to review in a month's time after another CT scan to assess what is going on. One thing my husband and I have learnt is to ask, ask, ask, if the Oncologist, Registrar whoever likes it or not. You are entitled to answers and being put on an alternative.  I am lucky as I get informed as to what possible side affect may be so have the choice to go ahead with it or not.  Hope this helps.

Cookie17

Butterfly318
Member

Re: Tamoxifen Homeopathic Alternative

Hello Maire.

 

I'm really sorry that you're side effects have been so bad.  It is the bit you say about worrying whether how you feel is side effects or the cancer coming back.  I have aching joints, my knees grind together when i sit, my feet hurt so much and the worst is a dull stress like headache most of the time.  My GP said 'you are bound to worry that it may come back'.  Worry doesn't really cut it, i have an overwhelming dread at every tiny ache or pain and wish i had to courage to ditch the Tamoxifen.  I had a 6.5cm idc grade 2 in 1/23 node which had minimal response to neo adjuvant chemo so i really need to take it but am struggling.  

 

Gilly x

NAZ
Member

Re: Tamoxifen Homeopathic Alternative

I stopped taking tamox ages ago. You can throw everything at it and it still could come back, but for me it's quality of life that matters. 0 sex drive, irregular periods and mood swings makes me miserable, so the tamox goes. So far, I have not regretted my decision. Best of luck .

Mindy63
Member

Re: Tamoxifen Homeopathic Alternative

I have been taking Tamoxifen for just over a year but just can't take it anymore! I've looked at the stats and would like to continue taking it but am just overwhelmed by how awful I feel and the constant worry about whether it's tamoxifen side effects or cancer!

Sans61
Member

Re: Tamoxifen Homeopathic Alternative

I have stopped taking it as well, the body couldn't cope I too have not told anyone Im just bustling along living a very full life which I could not even imagine when taking the dreaded Tam.

i know everyone is different but i am at peace with my decision, i lost a very dear friend who had everything thrown at her, she religiously took all her meds but sadly lost her fight to this horrific diease still very nervous about first check up in December though fingers crossed.

best wishes and good luck with any decision you make. 

SamLee
Member

Re: Tamoxifen Homeopathic Alternative

Like I say I think the main thing is, YOU have to be happy with the decision.  My husband just said that it was up to me, we are both very pragmatic and well aware that you can do everything they tell you and it can still come back, there are no guarantees.  He has never given me a hard time about it.

 

I was 42 when I was dx.  I have never told my onc or surgeon that I stopped taking Tamoxifen, I see her and my surgeon once a year, and when they ask how I am getting on I just smile now and say, yeah fine, everything's fine and then just go on my way for another year.

 

 

hotmomma
Member

Re: Tamoxifen Homeopathic Alternative

Hi Sam,I coudn't have put it better myself. What is the point in living longer,if you feel miserable? And it's not 100% certainty that it won't come back anyway. I too was diagnosed in April 2010 and only 44yrs old. I want some of my old self back. I'm happy that I've made the right choice for me. I just have to tell my oncologist now as I was told at my last appointment,there are no other  options. Oh, and I havent told my husband either. Not looking forward to that Woman Sad

SamLee
Member

Re: Tamoxifen Homeopathic Alternative

I don't know if this will help both of you, as it is not really advice, more my experience.

I was dx in Nov 2010 and had the full works, chemo, surgery, radio, herceptin for a year and was then expected to take Tamoxifen.

I tried on and off for a few months, but within days of taking it I felt awful and it was really impacting on my daily life.  So after around 6 months I stopped.  I didn't tell my onc as by then I was only seeing her once a year, I just stopped ordering my repeat prescription.

That was in 2011.  Yes, I know I have increased my risk slightly by not taking it, but on the other hand I had every other treatment, more than some people have, and I am happy with my decision.  And I think that is main thing, you have to be happy with your decision, not what someone else says. 

Yes the cancer may come back, but there again, I could take Tamoxifen for 10 years and then the cancer could come back after another 2, there are no cast iron guarantees.

I don't do anything special or take anything special other than vit D, but that was because I was diagnosed with a vit d deficiency.  I still eat all foods in a balanced way, and I still have a drink when I want one.  For me it is quality of life over quantity.  I don't see the point of going through all that treatment to be miserable.

 

hotmomma
Member

Re: Tamoxifen Homeopathic Alternative

Hi Christine, I have been on and off hormone therapy since January 2011. I started Tamoxifen for one one last go 5wks ago,but decided last Sunday that I'd had enough of the side effects and couldn't imagine being on them for years. I phoned my oncologist's secretary yesterday to cancel my appointment to see her on 4th November and to let her know that I stopped taking the Tamoxifen yesterday,but I was told it wasn't really wise to stop treatment and to keep my appointment. when I first took it in 2011 , I lasted 4mths and because of joint pain and fatigue,I came off them for a mth and felt great. Went back on them and couldn't  do any exercise whatsoever. Stopped taking them for a yr and felt fantastic,but was told to try Anastrazole instead. The joint pain was worse and I developed carpal tunnel syndrome in both wrists and nodules on my knuckles. Came off them and I as I said decided to give the Tamoxifen a final go. In just 5wks I have had enough. The list of side effects is endless and like you I'm scared as to where I go from here to ensure I do my utmost to stop a recurrence. I'm very health conscious,eat pretty well and go to the gym and walk my dog,but will this be enough to stop BC coming back. Any advice welcome

ChristineV
Member

Tamoxifen Homeopathic Alternative

I realize many will censure my decision, but I only made it 4 months on the tamoxifen.  The leg pain and fatigue were too much for me.   Now my new friend, the dark cloud of fear, is hovering a bit closer.   

 

I am doing what I can - off sugar, lots of leafy greens in my diet, trying to reduce stress, taking vitamin D etc...

 

However, my question to you survivors is, has anyone else out there also made this decision?  And, if so, what homeopathic alternatives are you using?  I've been reading about D I M and I3C, but haven't talked to anyone using these supplements, or any other, for estrogen receptive positive breat cancer prevention.  I'm really looking for some advice from like minded women.

 

Thank you very much for your input.