I’m 37 (dx at 35) and started tamox march 2010, due to my periods returning a month after chemo they also put me on Zoladex in april 2010. I have struggled for the past year with the side effects (as i know may of us do) but i have got to the point where i can no longer justify the benefits against the negative impact the treatment is having on my quality of life.
I have gained almost 3 stone in weight and tried a number of anti-depressents to help with mood swings, anxiety and depression - none of which have worked to any great extent.
I am 7/8 er/pr+, but only grade 2 11mm tumor with no node involvent. I think the total % difference was about 7 or 8% with chemo and hormone therapy combined. I can’t see this being significant compared to the next 5 yrs feeling like i do.
I’m also single and heading to the big ‘4-0’ i would have liked to explore the chance of ‘finding’ someone before then, but with the way i feel both sexually (non-existent) and self esteem (zero) - this ain’t gonna happen!
I am due to see my onc next week to discuss coming off the treatment and was wondering if anyone else was going through the same dilema or has already stopped their medication? And what your experiences have been with making this decision?
I stopped tamoxifen for a week and started to feel so much more like me. I stopped it when i went on holiday too so i felt normal. I have gone back on it now and the side effects are starting again. I dont sleep more than 2 hrs at a time. I continually wake and feel like i am in a fog. I am never rested and my joints ache like an old woman. The tiredness has made me stop working when we cant really afford but i felt dangerous at times.I am clumsy and uncoordinated probably becasue i am so tired.
The mood swings mean i shout at my precious daughters way too much then hate myself for doing it.
Thinking about 4 more years fills me with dread. My quality of life is definatly a bit crud but i am scared of re occurance. Interestingly my periods have never stopped or even been late and they dont seem concerned and did not feel zolodex was worth while. I was Er +, no nodes, 2cm.
hi evie,
so good to hear from you - i havent been on here very much, but i think i have just reached the end of my tether now, sorry that youre having a cruddy time of it too.
I never thought i’d see the day when i was wishing for the normal monthly PMT moods, aches and pains - but those are nothing compared to the constant onslaught on fatique/sleeplessness, hot/cold sweats, depression/hysteria i seem to suffer daily.
i’m not too concerned over recurrence - ever the optimist! But i am concerned if it still comes back after going through hell for five years i’d totally crack up!
i guess my sanity is my main concern - and the ‘quality’ of mum my son gets for the next few years. Like you, if i’m not screaming at him, it just means i’m asleep on the sofa when he gets home!
i have to say chemo was a breeze in comparison!
I’ll let you know what my onc says next week - i saw a registrar a couple of weeks ago but was a total waste of time. I’ll be seeing my dr for the first time in almost a year - having explained that i will be coming off the lot before my next app if not!
I agree chemo was a breeze in some respects because you eventually got better whereas with tamoxifen you just get worse!!
I begrudge feeling menopausal yet still having periods with proper pmt and pains! How does that work out?!
I think zolodex is whats causing you the most trouble tho as we are too young to be plunged into a false menopause. On just tamox alone you may feel a lot brighter. My onc said tamox alone was enough to protect me. Strange their different opinions. If i could just sleep it would all be tolerable. Taking sleeping tablet tonight! hope it bloody works!
Hope your onc appointment goes well. Thecdropping zoladex but keeping tamoxifen sounds a good half way house to try maybe, especially as there seems to be different opinions zbout it’s usefulness in a similar situation to yours. Maybe give it a fixed time period to see if it gets better? My onc said we will hVe a talk about zoladex if/when my periods return. I’m 36, no node involvment, grade3 17mm tumour, 4/8 er, -ve pr.
Hi, hope u dont mind me joining in!! I am in a very similar position to you, i started Tamoxifen and Zoladex March 2010, after having chemo n radiotherapy. I was only 24 when diagnosed so was told i needed both zoladex n tamoxifen!! I really hate the hot flushes n night sweats, they are horrid!!! I had appointment with my surgeon last week, n discussed coming off both, but she talked to BC nurse who advised i stay on both for a min of 2 years!! I also want to come off them to start a family though, so its not just the side effects that i have been discussing!! So at the moment it looks like i am on both for at least another year, then hopefully i can come off them both!! Let me know how u get on with you appointment please, as i have noticed on here that different nurses seem to have different opinions on treatments!! Good luck
Hiya,
saw my onc yesterday she was absolutely fab - though i did cry bucket loads on her!
She has agreed for me to come off zoladex and tamox for a two month trial to see if we can get the old me back (or should that be the younger me??!!)
Justmarried - i imagine they will look at your case much differently as you are so much younger. And i suppose it all depends on your histiology too. I think considering all the factors - size, grade etc - not having the hormone therapy only increases my chance of recurrence by about 7%. She did say it would be preferred if i continue for at least 2 yrs - but the couple of months break should’nt make much difference at this stage.
i think it is the right thing for me at this moment in time - i just could not go on - hit the brick wall and was about to jump off without a net!!!
Evie - hope you are getting on ok. I’ll keep you informed over the coming weeks - due back to onc in 8 weeks.
take care.
xxx
That sounds fab plan!! i am being rubbish and taking one tablet every 3 days but still feel rough. Seeing surgeon tomorrow as got lumpy sore armpit so will ask him to refer me!!
evie
Could it be lymphodeama? I have it mildly in the top of my arm and it feels like pressure in my armpit, tho its not lumpy just quite painful - and i seem to be walking around like a body builder does when there arms cant quite hang straight to their sides!
best of luck tomorrow - fingers n toes crossed for you. Let us know how you get on.
Pixie, your description of lymphodema just made me feel a bit better as i am at hospital tmrw too with swollen breast, pins and needles in arm and i have pains undr my arm a bit too. Im scared sh!tless. Glad your onc appt went well. If symtoms dont reduce in
those two months, do they just tell you you are just a right moody cow!!!
pIXIE the clinic was 1hr 45 mins late so they couldnt do any tests! Surgeon said he could feel what i was worried about and he would order a scan and mammo. He did say he didnt think it was anything but he did tell me my grade 3 cancer was 99% benign last time so i cant tottally trust me. He also said that i would benefit from tamoxifen so unless i am about to top myself- to stay on it! He said other drugs would have worse side effects!
Mine was pretty similar to evie’s. I had to go to NMGH as my surgeon at oldham is off sick. I waited from hslf two til quarter to six, getting increasingly anxious. Surgeon had a good feel round, looked at my red bit on scar and she said the swelling looks like common post rads dsmage/after effect, red bit normal in a scar as they chznge over time, pins and needles could be early lymphodema but she could see no swelling in arm but is referrinv me to the clinic. Didnt think i needed a sczn but said she would arrange one to reassure me but as place was deserted by then , i have to go back for the ultrasound. So feel slightly better but still got scan terror to face
have u started on your oncologists plan yet, any change???
Hi just wanted to check in and say hello pixie and evie. I too have often wondered if its worth it taking the tamox. I started it June 2009 and have had ups and downs. The side effects were really rotten for about 8 months then it seemed to ease up. Then it got worse again, with night sweats etc. I cut down to half a tablet for a couple of months and probably reduced to a couple of sweats per night. Recently upped dose again. I wanted to stop but was afraid to. I’m not doing the diet and exercise thing to see if I can lose weight and if that makes a difference. It’s a tough decision to stop - then if the cancer returns you’d never know if it was linked to stopping tamoxifen! Tamoxifen is not without risk itself of course. I don’t know what the answer is. I think half dose is a reasonable compromise.
Alex
xxx
hi alex - fab to hear from you again. i struggled with the diet and exercise route because i was soooo tired all the time - i just didn’t have the energy. it was like a viscios circle - eating to more to fuel my body but not being able to make it to the gym as i was so knackeered after lunch. Lack of exercise - leading to depression - leading to more fatigue.
I have noticed a marked increase already in energy levels - i’ve managed a couple of full days at work this week! I’m still tired - as i’m struggling getting to sleep at night but its sooo different from the fatigue i was having before.
vickie/sue - sorry you both have not got any solid answers as yet. You would expect that once you had been dx as a younger woman with BC they would be a bit quicker off the mark and take our concerns more seriously! Fingers crossed for you both.
take care.
xxx
i stopped taking it witin few months of having it.the side effects for me were horrible.i felt i rather take a chance and have some quality of life each to there own spose
I stopped it for my holiday and felt wonderful in 3 days. Same recently, stopped it for a week. No knee pain, no mood swings, energy to get off couch and play with kids and tidy up.
I slept better too.
Cant all be psychological? I also lost weight- water retention i feel.
I am taking a couple a week and feel bad but sick of living a half life but too scared to stop completely.
I’m currently on tamoxifen and zolodex and have decided to try a couple of weeks off the tamoxifen to see if the side effects improve. Mainly because I am struggling to cope with being post op (first stage recon) and having the fatigue/bone ache/hot sweats etc. Want to see my onc but he’s on holiday for about 4 weeks (!) and although the reg’s are lovely I’d rather see The Man. It’s only been a few days but already the awful bone ache has gone and the sweats have reduced. I know tamoxifen is doing it’s job but when it’s really affecting your quality of life and making working full time incredibly difficult it feels like the right decision for me. And my poor SO bears the brunt of the mood swings and loss of libido - so not good when you’ve been married less than a year!
