Has anyone changed their aromatase inhibitor and had fewer side effects as a result?
The background to this is - I am 64 and I was put on Tamoxifen, which I thought was giving me huge fluid retention in legs, but in retrospect I think that was from chemo - so I changed to Arimidex for 8 months, but I then got swollen tendons in my thumbs and fingers - trigger finger - gradually getting worse. Despite a cortisone injection this did not improve, and I felt the beginnings of carpal tunnel syndrome and even weakness in my ankles - maybe I imagined the last one. This worried me as I type a lot. I changed back to Tamoxifen and the problems went away.
However, not only do I have lymphoedema in the breast and trunk, but I got erisypelas/cellulite in my leg last year, and the doctor says it results from lymphoedema in the legs. I get regular manual lymphatic drainage (I am in Germany) and I am supposed to go three times a week, but I only go twice. I am now wondering about trying either Arimidex again or maybe one of the others.
I know I am lucky to get so much MLD, but I hate it. I hate being dependent on other people. I hate going to doctors and being told I am imagining my symptoms (‘You haven’t got trigger finger, and if you had, it would be normal at your age’) or being told ‘You’ve neglected the lymphoedema in your legs for years’ and then ‘Lose another 3 stone and it may improve’ (I lost 2 stone last year despite being on Tamoxifen). The gynaecologist knew I had lymphoedema in the breast but he didn’t know it could be treated. I have to work out everything myself. When I see the gynaecologist I want to tell him what aromatase inhibitor I might need to try if, as I suspect, the Tamoxifen really is making the lymphoedema worse. If I get another inflammation of the leg, I will surely have to try the change.
Obviously logically all aromatase inhibitors should have the risk of the same symptoms, but surely different people react differently to them?
Would be interested to hear other people’s experience.
I changed from Arimidex, after a couple of years, to Aromasin (exemestane) and have fewer side effects with this. I have been on Exemestane for about two years now and the plan is for me to remain on it for another 3 years.
I had Tamoxifen 5 years, now in year 3 of letrozole.
After about 6 months on Letrozole, started having problems with my mouth, just been diagnosed, after trying various things, with Burning Mouth Syndrome, apparently(I don’t believe it) 1 in 3 postmenopausal women suffer from it.
Now all the companies that make Letrozole say that mouth ulcers or dry mouth are a side effect but Rambaxy does state that their Letrozole has an uncommon side effect of redness and swelling of the mucous lining of the mouth(stomatitis) and dryness of mouth.
My Onc let me have 4/6 weeks break but made no real difference as not really long enough.
I am due to go back to him in April and I want to pin him down to why I should stay on Letrozole for 5 years after he initially said 3 years.
He has said that I can change but from other posts I see that the other 2 AIs have side effects so I don’t know.
I was on Arimidex for 2 years, side effects of hot flushes and joint pain in hands. When I saw my ONC inn September he suggested a change to Letrozole, I had 2 week break with no tablets then started Letrozole. I have felt ill ever since with nausea, no appetite worse joint pains and worse hot flushes. Yesterday I went to my GP and explained and she agreed it must be SEs of Letrozole, on reading the letter from my ONC I was only supposed to be on it for 4 to 6 weeks trial which I wasnt told, therefore I have put up with this for over 3 months. The ONC in the letter said I could always try exemestane but after reading the SEs list to me I have decided to go back on Arimidex. Better to have 2 SEs on this as opposed to 12 on Letrozole. I now have a 2 week break before starting Arimidex so hoping I start to feel better soon.
We are all different so its finding the right one and as the GP said they all have SE`s unfortunately, but better a tablet than BC.
Pam
Yes I think that it is worthwhile trying different AIs, if you can prove that it is a SE of the drug.
In my case I have never(touch wood) had problems with my joints or aches and pains but my mouth is the problem and proving that it is a SE and convincing an Onc that it is a SE is a problem. I am under an Oral Clinic for Burning Mouth Syndrome and not once have they looked at the SEs of Letrozole. My Onc only says “I have never heard of that one”
I go back to my Onc in April so will ask to try Arimidex and make sure that he states in his letter to the GP that it is not to be a generic version.
Thanks very much for all the replies, and thanks to Nicky for the bump-up. I’ve had quite some experience of difficulties with doctors. At least my gynaecologist will probably prescribe me what I want. But one of the oncologists I see every 6 months (because I was in a study) has not spoken to me since he lost his temper when I said I want to change from T to A, and he said: What if you have more problems with A? and I said, then I’ll try a different one - he was furious, and yet I hadn’t changed at all at that point, nor, which is probably more important, stopped altogether.
Anyway, I may try to stay on Tamoxifen for another year, but if I get inflammation in my legs again, I will prefer to try Letrozole or Exemestane.
Pam, you should definitely try another one. You can’t be certain that Exemestane would be worse. They all have lots of possible side effects, but not everyone gets them. My problem is that I suspect the general tendency of AIs is to cause tendon swelling. But there can be no harm in trying. I translate so I want to avoid having operations on my fingers (apparently not too bad) plus my wrist.
Is Tamoxifen out of the question for you? From everything I have read it is just as effective as the AIs, and the one or two per cent difference in results may have different reasons. As long as AIs cost thirty times as much as Tamoxifen, the drug companies were putting lots of money into advertising them. Of course, there may be reasons you can’t take Tam. And five years is the maximum on it as there were studies that showed its effects deteriorated after that time (although I am not an expert on this).
I can’t take tamoxifen because of hormonal history and have been on Letrozole for best part of a year and have all the sore and stiff joints. My heels are the most often painful, hands are mostly just in the morning, and I get very stiff if I sit for any length of time. I had 7 sessions of acupuncture which seemed to help, but I think this may not be a good idea if you have lymphoedema.
I have thought about asking for a change but changed my mind when I read the study that suggested that the pain/stiffness side effects mean the pills are working. I’d love to have no side effects but then I’d fret that the pills weren’t being effective.
Hi Margaret
Doctors don’t like patients to disagree with their advice, I have found. I was really unwell and had to stop working on tamoxifen and then kept denying it was side effects. Eventually the consultant’s wife who is a breast cancer nurse, told him I wasn’t to take it any more. They were very unhappy. Well guess what they’re going to be even unhappier with me next month as I am struggling on letrozole now so will be asking them if there is anything else I could take. It is a balancing act, isn’t it?