Forum Discussion
kmakm
7 years agoMember
Letrozole - Year 2
I'm six weeks into my second year of Letrozole. The good news is my hands have remained better since I took a one month break after six months. They still hurt, both bone and joint pain, especially with the cold weather, but they've never returned to the earlier level of pain.
My ankles have bone ache 24/7. This pain is now spreading up my calves. It's also spreading into my wrists forearms. My elbows remain sore and the inside soft tissue very tender.
I've given acupuncture a red hot go. It seemed to help my hands initially but not so much now. It gives me pain relief for my ankles while I'm there, but none when I'm gone. It's had no effect on the hot flushes. All in all I think I'm going to pull the pin on it shortly. It's expensive and I don't think the results justify the cost.
So I've moved on to try osteopathy. Many of you here have raved about it, and I've joined your ranks! It just makes my body feel better. The effect lasts for a few days, it's cheaper than acupuncture, and I get some money back from the health insurance.
I've accepted that the five to ten years on Letrozole are going to be painful. There's no getting away from it, so now it's about doing what I can to help me cope.
For example, the best thing about acupuncture is the heat lamp. It really soothes my ankles, so I'm going to save up and get myself one.
The mental health aspect remains challenging. I discussed it with my oncologist. Cancer or menopause or Letrozole or a combination of some or all? So she has asked me to take a two month break, keeping a side effects diary for two months before, and during the break. That way we'll know what is the Letrozole and therefore if we can tweak the AI in some way. I'm going to do that in the summer so I can really enjoy the break.
My oncologist was very sympathetic. She said it's often difficult managing the estrogen drop in women like me, who haven't gone through menopause before BC and then go onto an AI. She had some interesting thoughts about estrogen sensitivity. That in her experience the women who develop ER+ BC are very estrogen sensitive and therefore have a hard time on AIs. She said AIs had been tested on women with ER- BC and they don't suffer the side effects anywhere near as much to zero.
She said I'm in the 10% risk range so there's no doubt about it, I have to be on it. I'd very much like not to be the woman who cries on the phone when she's talking to her dietician (who she's met face to face six times) and finds out that said dietician is leaving forever to live in London (a romance)... However it seems as if that's who I am now. Hopefully a 'side effect' that stops when I stop taking the little brown pills. Ridiculous!
Oh and my oncologist also confirmed that the joint pain is arthralgia, and won't turn into arthritis when I've finished taking Letrozole. This was one of the questions that I put to the webinar doctors that wasn't answered.
There was more but I of course can't remember. My right toe joint is very very sore tonight me so I'm going to take a pain killer and go to bed and try to sleep. BS tomorrow for my next check up. Nothing to worry about but I can't help but feel a bit nervous. I think the worst bit is the flashbacks to diagnosis and all the bad news I received in that office. Nothing for it though, has to be done.
My ankles have bone ache 24/7. This pain is now spreading up my calves. It's also spreading into my wrists forearms. My elbows remain sore and the inside soft tissue very tender.
I've given acupuncture a red hot go. It seemed to help my hands initially but not so much now. It gives me pain relief for my ankles while I'm there, but none when I'm gone. It's had no effect on the hot flushes. All in all I think I'm going to pull the pin on it shortly. It's expensive and I don't think the results justify the cost.
So I've moved on to try osteopathy. Many of you here have raved about it, and I've joined your ranks! It just makes my body feel better. The effect lasts for a few days, it's cheaper than acupuncture, and I get some money back from the health insurance.
I've accepted that the five to ten years on Letrozole are going to be painful. There's no getting away from it, so now it's about doing what I can to help me cope.
For example, the best thing about acupuncture is the heat lamp. It really soothes my ankles, so I'm going to save up and get myself one.
The mental health aspect remains challenging. I discussed it with my oncologist. Cancer or menopause or Letrozole or a combination of some or all? So she has asked me to take a two month break, keeping a side effects diary for two months before, and during the break. That way we'll know what is the Letrozole and therefore if we can tweak the AI in some way. I'm going to do that in the summer so I can really enjoy the break.
My oncologist was very sympathetic. She said it's often difficult managing the estrogen drop in women like me, who haven't gone through menopause before BC and then go onto an AI. She had some interesting thoughts about estrogen sensitivity. That in her experience the women who develop ER+ BC are very estrogen sensitive and therefore have a hard time on AIs. She said AIs had been tested on women with ER- BC and they don't suffer the side effects anywhere near as much to zero.
She said I'm in the 10% risk range so there's no doubt about it, I have to be on it. I'd very much like not to be the woman who cries on the phone when she's talking to her dietician (who she's met face to face six times) and finds out that said dietician is leaving forever to live in London (a romance)... However it seems as if that's who I am now. Hopefully a 'side effect' that stops when I stop taking the little brown pills. Ridiculous!
Oh and my oncologist also confirmed that the joint pain is arthralgia, and won't turn into arthritis when I've finished taking Letrozole. This was one of the questions that I put to the webinar doctors that wasn't answered.
There was more but I of course can't remember. My right toe joint is very very sore tonight me so I'm going to take a pain killer and go to bed and try to sleep. BS tomorrow for my next check up. Nothing to worry about but I can't help but feel a bit nervous. I think the worst bit is the flashbacks to diagnosis and all the bad news I received in that office. Nothing for it though, has to be done.
71 Replies
- kmakmMemberThanks @Afraser!
- AfraserMemberGood luck, hope things improve!
- kmakmMemberWith my oncologist's blessing I have just commenced a two month drug holiday. No Letrozole until March 1st!
I was going to start this break in December but because of the QUE drug trial I had to wait.
Last time I took a break it took two weeks for the hand and ankle pain to disappear. The hand pain was never as bad again, but this time I have considerably more foot and leg pain, and elbow and arm pain. I am fascinated to see what resolves, when and how much. It's only the third day, but already I am no longer having the raging thirst for the first six hours after taking the little beige pill.
I'm also very interested to see if my mood lifts, my sleep improves and if the hot flushes abate. I think Letrozole is permitting my depression to continue. It's just not me to feel the way I do. My psychologist thinks it's possible I'll have to stay on an antidepressant for as long as I'm on the AI.
Don't get me wrong, I willingly take Letrozole for the benefit it gives me. But as we know, it's a bloody difficult drug to live with, so a break is very welcome. Stay safe everyone. K xox - JeanjeannieMemberThank thank you Cath x
- ArtferretMember@Jeanjeannie
Hi, the flushes will settle over time, at it did for me. I've just come off a 2 month break and the mini flushes have kicked back in big time which is a bummer but hoping they won't hang around for long. And yes what you are experiencing is 'normal'. Have you tried seeing an osteopath for the aches and pains? Mine works wonders for me. Also you can ask for 'drug holiday', it's well worth it. 2 months was a good time frame as it allowed the worst areas in your body to ease back to pre BC levels without feeling like the time was too short. Ask your onco about having a break. They are usually rather accommodating and will accept anything that sounds reasonable, their reasoning being that if it keeps you on the drug for the time period you've been given then all the better.
It's still the biggest pain in the butt though, and ankles and knees and, and ...all the best and ask us anything, anytime. Cathxx - JeanjeannieMemberThank you for that, all the best x
- arpieMemberHi @Jeanjeannie - I was 15 years post menopause as well when diagnosed early last year and also had arthritis in my hands, hips, knees & everywhere else! grrr I started on Letrozole but within 6 weeks, the exacerbation of pain, stiffness and 'clicking' fingers (also called Trigger Fingers) was too much to bear & I swapped to Exemestane! It was good for 6 months, then it became as bad as Letrozole. So now I am on Arimidex and so far, so good!!
take care xx All the best with your continuing treatment - kmakmMemberMany of my friends are now on the other side of menopause, no one so far has had it really badly, and they're all happily saying how good they feel... :/
- AfraserMemberSadly it’s all rather variable. I was well and truly past menopause when I started letrozole. My oncologist warned me that the symptoms could resemble menopause which reassured me as, like @iserbrown, menopause for me was a symptom free transition. I do have vaginal dryness so not side effect free, and my hitherto excellent bone density has diminished but not dangerously so yet. But no pain, cramps, flushes or sweats. It may be that one’s menopausal experience is relevant. Who knows?
- iserbrownMember@Jeanjeannie
It will get better as your body settles in and adjusts accordingly. There's a lot of confusion as @kmakm has said BC put her into menopause. The menopause is a breeze for some but difficult for others, coupled with meds that are fighting any stray cells the body seems to want to rebel. For me personally menopause was a non-event, a breeze, it's just this BC battle that turned in and lately my body is not too impressed with it all!
Take care and best wishes and hopefully you will find solace
Copy and paste from the good old google. Link from copy and paste
https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs/letrozole-femara
Letrozole lowers the levels of the female sex hormone oestrogen in the body. ... These breast cancers are called hormone sensitive or hormone receptor positive. Letrozole can stop or slow the growth of these cancers. Letrozole only works in women who have had their menopause.Apr 2, 2019