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
- Julez1958MemberThe number of views on this topic says it all - many BC patients will be put on letrazole ( or one of the other aromatose inhibitors) and many will have side effects.
For some the side effects will be mild, for other they will be more.
You will only know once you start.
Some oncologists still tend to downplay the side effects ( reason to find a new oncologist) but they are real and common.
A change to a different one sometimes helps as does exercise, acupuncture, massage or a variety of supplements depending on the type of side effect.
Always discuss with your oncologist before trying any supplements or “ alternative therapies” as they may in fact counteract the drug.
My favourite comment on here was from someone who said the most important side effect of these drugs was she was still alive .
Like so many things to do with BC , it isn’t easy. - iserbrownMemberYes I have and occasionally still have leg cramps on AIs
- LocksleyMemberI'm wondering if the leg cramps I'm getting could be related to letrozeole. Anyone having leg cramps.
- AfraserMemberI’m in my tenth year of Letrozole - no
joint pain, aches or menopausal type symptoms. A couple of other side effects but manageable. - iserbrownMemberDear oh dear!
Not everyone suffers. For some it's a mixture of menopause and treatment. For some it's a couple of side effects and others nothing!
Have you read the BCNA booklet on Hormone Therapy? If not, here's the link
https://www.bcna.org.au/understanding-breast-cancer/treatment/hormone-blocking-therapy/
The main message is if it's not compatible to you your Oncologist will change to a different one
Take care
Best wishes - Pommy8MemberAll these side effects sound horrendous.
Due to see oncologist in 2 weeks going to be putting me on Letrozole scary feel healty at 58 sounds like medication going to reduce quality of life. - RomlaMemberNature’s Way Curcumin is on special at Coles until Tues pm around $18 for 30 tablets. Woolies have on special sometimes too.
- RomlaMember@TaraV have heard a lot of good reports about turmeric esp it’s refined version called curcumin.Many ladies I know take it for osteoarthritis and find it very helpful.It is an antiflammatory I understand without causing stomach problems like ibuprofen. The ladies I know buy their Curcumin in the supermarket - I think the brand is Nature’s Way.Worth a shot .
- TaraVMemberHi @Afraser, thanks for those tips. I've seen info about tumeric but have never really taken it apart from in food - might need to think about that again. Having said that, my joint pain has mostly gone away at the moment - I think exercise makes a big difference for me. It's just a case of keeping myself positive enough to get up and exercise. Thanks for your suggestions and good luck x