I think tonic water no longer has quinine in it. It says aroma of quinine, or something like that on the bottle.
Sorry to hear about your current symptoms. You say you have completed radiotherapy, was this recently? as I'm sure you are aware, tiredness & fatigue is also a side effect following rads, so this is probably not helping, but should resolve more later on.
Is fibro - fibromyalgia? as if you have been off your usual treatment, so as you say, this may not have helped either.
You have been through a lot, so in some ways it's not surprising you feel the way you do currently.
Most women are fine on tamoxifen, or at least find any side effects manageable & am stating the obvious here, but see what your dr thinks, if you haven't already.
Please do be aware that surgery is one of the most effective ways to treat bc, yes, its scary - we've all been there, but when it comes down to it, the bc needs to be removed to get the best outcome.
There is no evidence that alternative treatments can do the job of conventional treatment & there is a lot of 'woo' out there. Obviously, some alternative treatments are fine to use with conventional treatment & if it makes you feel better then great, but do take advice from your wife's team.
Oh, yes indeed. Screw this stuff!
I was on Exemestane prior to this, which damaged my thoracic bone marrow within 3 months of taking it according to a recent MRI. I have 4 degenerative discs there and was soon literally incapacitated by bone pain. I threw the rest out and felt great within 2 weeks.
I agreed to try Tamoxifen but only one month in, I am getting spasms again in my thoracic spine, as well as a return of the bad pain at the base of my spine, radiating up to my waist. I see the oncologist on Monday. If there is any benefit to trying a month on and a month off I willl give it a shot, but otherwise, it goes in the garbage with the other drug.
I have been in pain from my spine for 25 years( I'm 63), am now on pain management, which helps a lot, but no way am I going to tolerate any more pain than I am usually in. I would rather feel well and not live as long, than feel like I am dying every single day and live a long time.
I also quit chemotherapy due to severe side effects. I did do radiation, but
I am on year 4 of 5 on Tamxiofen and for the past week my left knee has been hurting. I am scheduled to see my medical oncologist for a follow up today. Do you have any suggestions on how to relieve the pain. Ibuprofen is not working for me.
Hello, Im almost 43 who had oestrogn and progrestrone positive and Her negative breast cancer. Ive been on tamoxifen for about six weeks now and have had a lot of joint pain but mostly really painful muscles on my weaker side.My left side has been so weak and the hip pain dreadful but my physio says its muscles. I have CFS too and i think the chemo has made it worse as my brain has been so fogged and unable to cope with anything. Now four months after chemo ended the fatigue and fog are clearing. Being in the sun and exercise everyday has helped me with the CFS. I havent had any fibro pain. Do stay on the tamoxifen- it is so important to stop the oestrogen which feeds the cancer. Im having a complete hysterectomy too hopefully next month! Hope you're doing ok.
I am 45 year old BRCA negative patient who just went through a lumpectomy and 6 weeks of radiation. My cancer was est and pro positive and I started taking tamoxifen 7 weeks ago and feel awful. On top of that I have CFS and Fibro and had to go off of cymbalta. My current symptoms are extreme fatigue and weakness especially on my right side. I thought it was being off of the cymbalta that was causing my decline but now I'm not so sure. I am having a complete hysterectomy at the end of this month. I am going to go off of the tamoxifen for a week and see if the fatigue and weakness subsides some. Any other recommendations? I'm not sure what else to do. I am a pediatric PT and find it really difficult to treat and work with the way I feel. My cancer had micro mets and no chemo was needed. I am also on a plant based diet. Please help.
I was on tamoxifen for 12 weeks and just this week stopped taking it due to side effects. My concern was if these are the side effects I can see what are the side effects I can’t see and what are the long term effects on my body. That concerns me. I understand your wife’s stance. There has been much research done on natural ways to reduce or eliminate cancer (if that is at all possible). I suggest looking up natural solutions to cancer treatment. There are some great sites out there to research and a wealth of knowledge. Though you do need to choose a direction that you are both comfortable with and that varies with everyone (my husband if he were me would stay on the medication where I am choosing to try an alternative natural method). Also there are many foods and spices such as turmeric that are historically known to reduce cancer cells. Start your research and see where it takes you. Good luck and stay positive….that is half that battle for both of you!
Is it possible for the cancer to go away with Tamoxifen and Zoladex alone. My wife has been on Tamoxifen and Zoladex for the past 6 months and the cancer has decreased 30 percent. But, the doctor insist that she will have to go through masectomy as she has two lumps in the breat. My wife just doesnt want to go through surgery. She is 36 years, I also wanted to know what are the chances of her to get pregnant after she get off Tamoxifen and Zoladex.
Thank you in advance.
I've found drinking a small can of tonic water every day (or whenever possible) helps with joint pains - apparantely it's the qunine in it.
Hi, funny thing is that I am on year 4 of 5 taking tamoxifen and over the last two months I have had knee pain only in one of my knees, it comes as quick as it goes. The first time it started was two months ago and it lasted for two weeks the last time was 3 weeks ago and it just eased off 4 days ago. I have been referred to a consulatant who checked me out and cant find anything obvious wrong with my knee, so I have now to go for a MRI scann next week. But its funny how so many of us who are taking tamoxifen have almost the same issues.
I'm not sure if you're still active on this site but thanks very much for this posting, I have had a very bad stiff neck for about a year and only recently realised it could be the Tamoxifen. I get a bit of pain in my ankles but I think I've been lucky with the side effects. The recipe of various supplements and drugs is very useful, I'd read about glucosamine but didn't know how much to take. I'm going to try this. I thought I wasn't able to take Ibuprofen with Tamoxifen so that's a bit confusing but I'll phone my BC
Sorry to hear you are having pain too. The pain in my feet is under the balls of my feet and seem worse after walking on hard floors at work.This has never been a problem before and I've done the same job for the last 6 years.I did have a very sharp knife pain in the area you talk about but I thought it was from a Canula and tube that had been in there during surgery. I had Acupuncture and it really helped.
Hope yours settles down.
I too am experiencing foot pain but i hear lots of ladies complain about pains in the heals and the sole of the feet but i am experiencing pain on the top of my foot towards the right hand side of my right foot. its just very stiff and i seem to hobble until i get it moving.
where is your pain?
I have been on tamoxifen for 11 months and I already feel like 90 I am 45.
I was also given a different brand about 5 months after starting tablets and felt awful on them.I spoke to the breast care nurse and she said it was most likely the change in brands. I went back on the original brand and find this suits me better.
The worst side effects are aching bones, weight gain, and the hot flushes are a nightmare day and night.I was given clonidine for flushes is anyone else on these they didnt help me at all.I have just had them changed to (Megace) is any else taking these and how do you find them. I haven't started them yet as the side effects also look like a nightmare.
I have been taking Tamoxifen for a year and haven't had any joint pain until now. I remember someone on the Forum saying different makes of Tamoxifen can cause different side-effects and I have just been given a different one by my chemist. I have been having painful feet and wondered if it was the new Tamoxifen. Has anyone else had the same problem?
Thank you everyone for your responses. I will definately discuss it with my oncologist on my next visit. Ive just finished a 12 & 1/2 hour shift at work, and have been on my feet most of the day, and the pain is much worse! Even got aching knees today!
I have been on tamoxifen for almost two years and have suffered previously with not being able to sit comfortably. it always got better with chiro treatment.
This time I have been six times for treatment and it has actually got worse affecting my lower back so it feels as though a steel band is round me. I cant sit comfortably and the last visit it was suggested did I think I had cancer again as there was no progress.
I have had an x ray and am waiting to go for blood tests, I am turned 60 so it could be my age, but I feel so stiff and uncomfortable.
Whenever I have mentioned could it be the tamoxifen they seem to dismiss it.
Definitely having a lot of joint and muscle pain, so much so have been having physio for the past year. I don't know how much is the tamoxifen and how much is the chemo-induced menopause - probably a bit of both.
Mine affects my back, neck and ankle and foot. Elinda x
I mirror what the others have said.I started Tamoxifen just over 2yrs ago and at christmas i started getting a shooting pain down my thigh.This progressed into a soreness in my groin area,Onc sent me for a bone scan that has come back clear.However the stifness/pain has now affected the other side of my groin and leg,and walking a lot seems to aggravate it more.
I am 48 going on 98.
I want to take comfort from the result of the bone scan,but little doubts still niggle as a result of the ongoing pain.
I have been on tamoxifen for 2.5yrs and seem to be getting stiffer and stiffer. My back is very stiff when getting up after sitting down and if i have been on my feet for too long it aches. when i sit down and rest it it does get better. Also i am having quite bad trouble with my right foot but not on the sole of it but the top of it. i hobble out of bed as if im 90 but im only 37. I asked the onc as she said it ws tamoxifen that is causing stiffness.
I have been taking tamoxifen for about 3 years and have been having increasing pain in my hips with shooting pains down my thighs. My BCN said that the tamoxifen shouldn't cause it although I have heard of plenty of people on here who have had achy joints whilst on tamoxifen. Anyway, I had a bone scan that was clear this time last year but because the pain is still there and is now constant I have been sent for another bone scan and if that is clear I will have an MRI. I'll get the results next week. Don't want to frighten you because it is probably nothing but I think it's worth getting it checked out. I'm 35 by the way but feel about 95!!
Tamoxifen doen't cause bone thinning problems. It actually has the opposite effect.It gives us some protection. It is the AI's given to post menopausal women that can cause bone thinning problems.
The joint ache and pains could be caused by being put in an early menopause or by the hormone blocking effect of tamoxifen. You should definitely discuss the pains with your BCN or onc.
Hello, Im 31 years old and have been on tamoxifen for the past 2 & 1/2 years. I am getting increasingly worse hip and thigh pain, which I think is caused by the medication, which is starting to get me down now. It started about a year into my treatment, and has definately got worse. I feel like my hips are separating! Ive never been offered bone density scans or discussed implications of osteophorosis (however its spelt). Does anyone experience this and what response has your oncologist given? Is anyone on tamoxifen having treatment/monitoring for bone problems?