Hi Ladies,
I started taking Aromasin about 7mths ago after being on Tamox for 2.5yrs and the SEs for me are now bordering on unbearable,these last few weeks my feet have been badly affected and are so swollen and painfull so much so that today i ended up sitting in A&E for 3 hrs as no GP available due to the easter hols.
Last night i woke up with a severe pain in my left foot which was excruciating all i could do was vigiourously rub the foot untill it eased off about 5mins later but i couldnt put my foot on the floor without pain or put any weight on it,this morning i woke up with a red and very swollen foot, it worried me that it may have been a blood clot so i ended up going to A&E to get checked out to be on the safe side.
After getting checked out by the drs they didnt think it was a blood clot (thank goodness) but after them reading up on my meds they think the severe swelling is being caused by the Aromasin as it was listed as a (Uncommon SEs) in their drug book.They have given me Analgesic cream to rub in my feet 3x a day and ive been told to keep my feet elevated untill Tuesday when ive been advised to ring my onc to get some advice as to whats best to do.
Both feet are effected by swelling and i also still suffer with daily horrible cramp in both feet and legs.
Just wondered if anyone else has had this kind of reaction with Aromasin and if so were you advised to change meds?or given something to help? as im not sure i can put up with another 2yrs like this!
Thanks
Linda x
Hi Linda
I’m on Aromasin but I haven’t had such a violent reaction to it as you seem to have had. I do sympathise, after everything else we have to put up with it would help if the medication we take didn’t cause such problems.
I have been on Aromasin around the same length of time as you and was on tamox before that too. I have very stiff joints particularly my feet and ankles and my left hip is very sore, so much so that I have trouble sleeping. I seem to be popping the paracetamol all the time
It sounds as if you need to speak to your onc about it all and see if you can try a different AI. I had awful cramp in my legs with tamox but haven’t had it with Aromasin. The main problem for me has been headaches. I have severe migraine and Aromasin made my migraine worse. I got some tablets from the doc which seem to have solved that problem.
I hope you get sorted, it’s miserable when you can’t get about and are in pain.
Love to you
Jan xxx
Hi Jan,
Thank you for your reply,yes i do think i need to speak to my onc asap as my feet at the moment are a nightmare,i shall get in touch with him after the easter hols on tues and realy hope he will be able to give me something to help or if needs be change me to another AI.
Its horrible sometimes isnt it with some of the potencial SEs ,i guess its just how each of us react to different meds sometimes, but i also know of other ladies who take Aromasin with few problems too so i quess im just unlucky. Aromasin is a very good drug according to the latest trials so i will be a bit upset if i cant continue with it but i know i definately cant go on like this.
Like you i also suffer with Mugraines too so i realy do sympathise with you ,my migraines have also increased on both Tamox and now Aromasin its horrible isnt it.
Oh to feel like “normal” again, wouldnt it be wonderfull think ive forgotten what thats like!
Thanks again
Love Linda x
Hi Linda
I hope you manage to speak to your onc today or at least get an appointment soon.
I think Aromasin is good but the other AIs are good too. I think we have to accept that we are going to have side effects unfortunately. Yours seem rather extreme though and are severely affecting yout quality of life. My BCN told me not to put up with side effects for longer than 3 weeks. There is always something that can be done.
My ‘normal’ is different now from pre-BC normal. The whole thing has changed my life. I view the world from a different perspective now.
Let me know how you get on today.
Love Jan xxx
Hallo… Know what it’s like when these rotten side-effects peak during mass Bank Hols!
Have been on Aromasin 6 or 7 weeks now (Tamoxifen & Femara failed to halt progress of secondaries in bones and lymph node) and initially thought I was ok-ish on it. Femara was a nightmare for the first 6 weeks but then calmed down. However - over the Easter period, problems in feet and lower legs (and hands to lesser degree) got me thinking favourably of amputation at the knee (plus nearly had to have wedding ring cut off…!)
Lucky for me, I have 2 Hospice nurses in my church and they advised me on Sunday to start on the codeine phosphate I had been prescribed (but was resisting due to the constipation side effect as I still have anal fissures from the Femara Nightmare…) add paracetamol and Movicol (laxative) plus loads of water/fruit and see how that goes. Today - things a lot calmer… They also said that if no better, small doses of Amitriptaline could help.
I’m determined to stay on the Aromasin IF it’s working - just a matter of finding the right level of pain relief. The other recommedation is foot massage particulalrly if you have a friend/partner strong enough to pull toes right forward whilst holding ankle back so you get a real pull on the tendons in calf - SUCH relief!! Also, piles of pillows under legs whilst siting on sofa/bed help when you’ve been pottering for too long… Good luck!
Hi Haxted
I had a bad time with Femara with my migraines. Aromasin has been better for me but I do get stiff joints in the lower half of my body. My knees are very painful at times and my left hip. Initially I also had stiffness and pain in my hands and fingers but that’s just about gone now.
The constipation thing is really horrible. If they ever introduce it as an Olympic sport I’m the woman for Britain. I use some fuit cubes called Ortisan from the herbalist . They are the only thing that work for me. A bit expensive but worth every penny.
I hope you get some relief from the aches and pains. Today my stiffness isn’t so bad, fingers crossed it might be going away, pleeeese!!!
Love
Jan xx
Hi Ladies,
Just to let you all know i got a phone call from my onc about 5.30 after todays clinc,to discuss the horrible problems im haveing with my feet , my onc has decided to try me on another AI, Anastrozole (Arimidex) and is posting the first mths supply to me which i should get in a couple of days, hes also writing to my GP for him to perscribe future perscriptions.
I was a bit worried about swapping meds but my onc doesnt realy want to give me extra meds for the water retension as he says they cause even more problems sometimes like kidney trouble/stones ect tut, so he wants to try Anastrozole first to see if things inprove, he has assured me these meds are just as good so fingers crossed.
Does anyone know much about Anastrozole ? of course am a bit worried now about what SEs this med might bring!
Ah well, keeping fingers crossed at least my feet might improve.
Hope you are all doing ok, it can be pretty rubbish sometimes cant it, Haxted like you ive also been seriously considering amputation too! big hugs to you all.
Love
Linda xx
Hi
The whole BC thing is rubbish, you’re right Linda. But we just have to get on with it.
I’m pleased that you were able to speak to your onc. Usually when we need them they either take days to get back to us or they have just gone on hols for 2 weeks!!!
I have two friends who have taken Armidex. One has now done her 5 years and finished them just before Christmas. She had aches and pains which improved as time went on but she says that she’s back to normal now so that’s good to know.
My other friend has been on Arimidex for about 3 and a half years. She was stiff with aches and pains too but she says she’s much better now. She had bad arthritis before BC anyway so she already had trouble with her joints.
It’s just a case of trying them and seeing what happens I suppose. I do hope you find that they are OK.
I swim a couple of times a week and I think that helps a bit with the stiffness.
When will you know if the Aromasin is working Haxted? I do hope it does the trick for you. We can do without all the worry on top of what we have to cope with already.
Keep us posted.
Love J xxx