Forum Discussion
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
- @kmakm Sometimes, Kate, that pressure valve just has to blow particularly when all you want are answers and the disappointment of not getting any useable advice is enough to tip you over the edge...again. And yes, you're over it happening. Crikey i know i was. Also the ct and bone scan you're about to have would also have been playing on your mind, that subconscious mind of ours has a lot to answer for, mucking us about behind the scenes.
This will pass, Kate, i know it will. Have faith in yourself and in the people who know and love you. Big hugs, Cathxx - Sounds like heaven @Artferret. Absolute bliss.
Couldn't fake it anymore today. Broke down late morning and cried for an hour and a half in the car, parked in a side street, after seeing my breastcare nurse. I was hoping she could give me some advice on how to get my mojo back but it was not to be. It's been a bad day. - @kmakm
Skiing has been pretty good considering a couple of weeks ago there was virtually no snow...you feel sorry for the people who rely on it for a living but that's the way with seasonal activities. One minute it's bust the next a half metre dump and everyone heaving a sigh of relief. Falls creek is apparently one of the best in the world for snowmaking. Having a break for the next couple of days waiting for the weather to clear. Saw my first blue bower bird in our backyard the other day! We get the young ones which are olive green but i hadn't spotted the male. They love our figs...along with every other bird!
As for faking it, I'm past master of that to the point that my family still don't know how bad i was coping at the time, except my husband and even then only some of the the time. Went away to Byron Bay with a group of long time girlfriends and ended up blowing up at them...i don't know who was shocked more, me or them, i think they were. But i figured later on when going on my cool off walk that if i couldn't say what i did to a bunch of good friends then they're not good friends. They certainly tiptoed round me for the rest of the day!
So today will be a day of relaxing, dog walking, walk down for morning tea and applique. I can hear king parrots calling, i love imitating them, they get rather confused! - @Artferret You are so kind, thank you. Mentally I'm a teeny bit better than six months ago. I can see how it could go, fractionally improving as time goes by. "Infinite patience" indeed. That's a terrible thing to contemplate, feeling so mired for so long, but what choice do we have? I'm just so tired of feeling so sad and desperate. I just want it to stop. For the sake of my kids I'll keep faking it.
Sounds like we're treading similar paths with Letrozole and breaks and perseverance and osteos. But you'll never catch me skiing! I'm glad you're having a lovely time. Plenty of snow?
See you soon I hope. K xox - @kmakm
Hi Kate, i have until the end of the month before going back onto letrozole and boy have i enjoyed the break! Looking back at the diary I've kept it took a full month for all areas of my body to have relief and am enjoying our weeks worth of skiing right now. My hands will always be an issue as i found out the full results of the xrays i had done just before going off the drug when i saw my gp last week. My hands and wrists are showing signs of being riddled with arthritis, unfortunately hereditary, but even so i didn't have the pain associated with it before going on the drug. That and mobility has improved significantly during my break...I'm not swearing as much! So I'm hopeful that will not go back to what it was on the drug.
Interesting about the oestrogen sensitivity as i would have been in that category.
As for my osteo, she is a godsend. Having seen her since i dished my shoulder skiing in 2011 she knows my body well. I book an hour every month and she never has a problem filling it!
I have decided to go back on letrozole after chatting with my gp at least until my yearly check up in October. If all is going well then I'll keep on it. If not I'll try anastrozole.
As for the mental side, that takes time, Kate, time and an infinite amount of patience and you've been through a lot. It'll come and will probably creep up on you in stages until one day you'll think, wow, that's stopped happening or I'm not having that dream anymore or I'm not stressing out so much come appointment time. I still mildly stress out come appt time but that's easing. Still can't have a normal blood pressure reading though when seeing my gp! You've gotta laugh... - @kmakm apparently takes a month to get out of the system.
- I don't know quite what to expect @kmakm. My onc wants me to see her as he thinks that she is likely to have a bigger bag of goodies that can be selected from to help with side effects. Except for the $, I figure it can't hurt to find out.
- @"Kiwi Angel" I have to say that at night when I'm not moving round, I get completely fed up with being in constant pain. It's not low level enough to be pushed into the background. It intrudes. Not always massively but enough to be mentally wearing. Oh well, it is what it is. I plod on.
I'm sorry you have so much worry about taking a Tamoxifen break. How long it takes to leave your body if you do stop taking it? K xox - @Sister That's so good that the prednisolone has had some lasting effect! What are you expecting from the rheumatologist?
I can also suggest gastroenterology as a medical specialty. With the at home poo test they are now receiving 700 referrals a week at my local public hospital. I'm now on the waiting list for a colonoscopy. It will be six to seven months... - I'm happy for you that something seems to be helping. It's the rock and hard place thing - who wants to live like this but you have no choice if you want to live.
Although some of my pain has returned since taking the prednisolone, so far it hasn't gone back to anywhere near what it was beforehand so I'm hoping it has settled - I think I can manage this long-term. Finally heard from the rheumatologist's rooms yesterday - appointment for 23 December, but I'm on a cancellation list. If anybody's kids are looking for a medical specialty, I'd suggest that one - long waiting list and big gap.
Good luck with the bs appointment @kmakm
