Hi
I was just wondering if anyone else had the same experience as me, I’m looking for solutions.
I went on standard tamoxifen 8 months ago, 3 months of generic and my hair was falling out, joints aching, flushes etc. Changed to nolvadex d and had 3 or 4 beautiful weeks of nothing! I slept like a baby! BUT then the hot flashes started, now I’m having them every hour al night long, I never feel refreshed, actually I am mrs serious crabby arse, eat everyones head off. I am now trying vit E and primrose oil, and thinking about acupuncture. Has any one had any success with acupuncture?
Otherwise I’m giving up, can’t stand this…its driving me crazy, and I mean clinically demented!
claire
hi Claire, i was only on tamoxifen for 50 days, and i found it as bad as your describing it, it didn’t help that the onc gave me one brand for a month and the gp gave me another brand! it was like going to hell and back, you really need to go and talk to your onc again, no one should have to suffer like that, i ended up having zoladex, which was equally as bad, then having a full hysterectomy with billateral oopherectomy, i have just started on arimidex and am hoping this is better for me, i am at the moment going through the menopause proper, but i had to fight to get the tackle removed, as i did not want to go through the menopause symptoms and then go through it all again after five years. i would also check about the primrose oil, just make sure that its not oestrogen based, anyway, good luck, don’t take any bull from your onc
lots of love
Alisonxxx
I was only on Tamoxifen for 20 days before I was taken off them because of my right leg swelling up enormously and being extremely painful that they thought it was DVT. The 20 days I was on Tamoxifen, I felt dreadful, ached from head to foot, one hot flush after another, no energy and fell asleep as soon as I sat down. My onc changed me over to Arimidex but I still had the hot flushes/aches and pains, but no swellings and I didn’t feel quite so ‘dreadful’.
The hot flushes and violent chills I was having were awful so I went to see my BCN and she recommended StarFlower Oil 1000mg with 220mg of GLA capsules for the hot flushes and also suggested I bought a ‘Chillow’ for the night sweats. Since starting them in early November, the flushes have subsided dramatically from 15-20 a day to 5 or 6 [sometimes less] and rarely any through the night and that’s without using the ‘Chillow’. Aches and pains have nearly vanished too, I think the ones I get now are only from over-exertion and also I am nowhere near as fatigued as I was. My BCN did warn me that it would take at least 6-8 weeks to notice the benefits of SFO capsules and it’s such a relief that for me, that she was spot-on. They have made life much more bearable.
Only comment I can make about acupuncture is that I’ve just had 3 sessions of it for tennis elbow and it’s relieved the pain so much, so it obviously works.
Hi There
Although I am having hot flushes they are maybe 5 or 6 during the day and the same at night (although the last 2 nights I have only woken once in the night with it). But my major problem is constant nausea, really bad in the mornings, have to keep postponing morning plans as feel unable to even get on a bus.
Did either of you experience this and was there anything that helped? What are GLA capsules Spooks? And where do you get them from?
Cecelia. x
Hu Cecelia, i fetl like i was having morning/noon and night sickness, for me it was just like being pregnant, it was awful, and really you do need to talk to your onc or bcn to get something to help you to combat this nausea, best of it is they don’t tell you about it before they shove you on tamoxifen, nothing at all helped me, but that could be because if a side effect can get me it will!!!
Alisonxxxx
GLA is actually present in the StarFlower Oil capsules Cecilia
Quote from the label: Starflower Oil is nature’s richest source of this imported unsaturated fatty acid Gamma Linolenic Acid, better known as GLA. These capsules may be chosen by people wanting to maintain healthy skin and supple joints.
My BCN said only to get the SFO capsules that had a minimum content of 220mg GLA, so I just did a search for a supplier and ordered some online, but have seen them since readily available in pharmacies and health shops.
I have read loads about StarFlower/GLA on the net and there’s many, many varying reports of what they’re good for, but whatever they are, they seem to be working for me at the moment.
Thankyou Spooks and Alison
I’ll get some Starflower oil, even though the hot flushes have subsided a bit, it can help with joint pains I’ve been getting.
The nausea is totally unacceptable. I have domperidone which worked for me during chemo but don’t seem to do much at all at the moment. I have just bought some ginger extract capsules from the chemist and have necked 2 of those so we’ll see!
Thanks
Cecelia. x
hanks for your replies, i was worried when I started tamoxifen but couldn’t believe that I would contemplate dumping it. I read messages from women who had dumped it and thought what can be worse than bc, surely a few side effects will be manageable, how wrong I was, they chip away at you till you feel like you are going insane, aching joints, hot flushes, pmt like symptoms…i mean crabbyness, I understand now, I would so love to move to a place where my cancer treatment was behind me, but every flush and ache is a reminder of the blasted bc.
claire
Dear Claire
Back to your original question, I think alternative therapies are well worth trying. Hypnosis or acupuncture for example can really help.
Know what you mean about the constant blimmin reminders of the BC. I have no nausea today, had a reasonable night, but still need just 1 night when I don’t wake up at least a couple of times drenched in sweat.
Hope you feel better soon
Cecelia. x
Hi Cecelia
I had Nausea on the generic tamoxifen but it went when I switched to nolvadex d, and hasn’t come back. Are you on tam or a different one?
claire
Hi there
Started a different one today, originally it was the G (for Generic?) one.
I asked for 10mg pills that I can take twice a day to see if that helps, so they have given me 10mg in a box marked CP Pharmaceuticals, all it says on the box is Tamoxifen.
Anyway, will see how it goes, but either I had a bug or the ginger tabs work as I feel much better today.
How are you today?
Cecelia. x
Hi, try Venlofaxin. My consultant presecribed it due to the hot flushes (brough on by early menopause due to Chemo (I’m only 43!). It is an anti-depressant, but has known beneficial side effects to reduce hot flushes. Since starting in November, they’ve reduced to 3 or 4 per evening, but they’re not true flushes (I no longer feel that somebody is peeling my skin off!)
Suzie K
Hi Susie
A friend of mine said she had that too and it really got them under control.
Thanks
Cecelia. x
Hello everyone - this is my very first time on the chat room. It is such a relief to read that so many other people are having problems with Tamoxifen. I am beside myself with stiff joints/hot flushes/mood swings/nausea and indigestion/weight gain and horrid lots of watery vaginal discharge. I have been trying to find out what I can do about these side effects. So far I am going back to the GP to see if they will prescribe prozac - as this has been recommended - and perhaps some lansoprazole for the heartburn. I’ve also been recommended to get a chillow - do any of you know where you get them? I will also take your advice. I still get my periods and am quite young. As one of you said - I just want to get on and I feel like some old lady with all these nasty side effects!! May the force be with us!
Katster
Hi Katster!
i got a chillow and got my off e-bay. It’s great but be warned it does lose it’s coldness through the night.It seems to adopt your body temperature and warm up.I chuck it out and then grab it again later when it’s cooled down. I also have a set of fans around the house. An upright by my settee in the lounge and a small fan by my bed if i need it. I’ve tried acupuncture but unfortunately it didn’t help me.
good luck
mandarin
Hi katster
I have added a link to a Breast Cancer Care publication called ‘Menopausal symptoms and breast cancer’ which you may find helpful. The publication can either be downloaded via the link or ordered from the helpline on freephone 0808 800 6000 the lines being open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm.
breastcancercare.org.uk/docs/menopausal_symptoms_jun_2006_0.pdf
Best Wishes
Lucy
Can I just say I did not find the chillow pillow helpful because as mandarin says it got hot with my body heat. i bought one whilst going through chemo in the summer of 2006 and having mega flushes. the thing slipped down and was so hot and hard and uncomfortable.
18months on tamoxifen and i just think if it keeps my cnacer at bay i wil take it but the side affects are horid i feel like a 86 yr old instead of 46. could be worse though i could have extensive mets.
I just accept now that i am a cancer survivor and my medication although crap with the side affects is prolonging my life.
Rx
Have I not read on here somewhere that that some ladies have been described a mild sedative by their gp that has reduced the hot flushes? Could be wrong brain is so scrambled but thought it was a thread on here.
Hugs
Karen
XXX
Hi
Just found the thread have a look for yourselves
Undergoing treatment: hormone therapy, tamoxifen etc.: Back on the happy pills
Karen
X
I too have a chillow and have found it really useful. It takes a little getting used to, as it is harder than a pillow, but it is worth sticking with it. Yes it does heat up where you are in contact with it, but when I wake up hot in the night I just turn it around so my head is on a cool part, and that feels so good! I got mine off Amazon.