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bravescholar
Member
since
11-08-2015
329
Posts
55
Hugs
20-07-2020
08:38
Thanks for that. I think it will be a few months before I know whether it’s working sufficiently well for that. All good after round two but first set of scans not due til the autumn. Fingers crossed.
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18-07-2020
02:27
Thank you. I appreciate you taking time to respond.
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18-07-2020
01:49
Hi. I’m on my third round of capecitabine/Xeloda for bone mets with bone marrow involvement. Am doing well. Latest blood test results were good. The oncologist has said if things continue to go well, we could look at changing from the usual 21-day cycle (two weeks on and one week off) to a 28-day cycle (week on, week off, week on, week off). The benefits are fewer trips to hospital and fewer blood tests. I have heard of this happening if you are not tolerating the drug well but not if you are tolerating it well. Does anyone have any experience of either? Thanks.
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28-05-2020
11:14
1 Hug
My onc told me the longest she’s had someone on capecitabine for is three years and four months. She also confirmed that, depending on how things go, it is possible to go back to hormone treatment
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28-05-2020
10:49
1 Hug
Hi. I’m in more or less in the same situation as you. I’ve been on abemaciclib and fulvestrant for a year and today I agreed with my onc’s suggestion that we move to capecitabine. Tumour marker’s been going up for months, haemoglobin is down for third month in a row and scan results today showed enough progression in bones for her to want to try a new approach rather than try most obvious next treatment, everolimus and exemestane. Good luck to both of us. Best wishes.
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08-03-2019
09:01
Hello. Sorry to hear you’ve been in pain. Trigger finger/thumb is most definitely listed as a side effect in the patient information leaflet of several of the makes of letrozole I get. I’ve read of several cases of GPs not knowing this until a patient has pointed it out. On my front - and this might give you hope - the painful trigger thumb I developed on both hands within months of starting on letrozole has completely gone. I’ve been on letrozole three years and while I can’t recall when it went, I’d say it must be more than two years ago. I’ve still got slight swelling in the thumb joint but it is very slight and it is not painful. Thankfully I never had the joint pain/swelling that has afflicted others on letrozole. Best wishes.
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30-04-2018
05:37
1 Hug
Ha. I realised I had already posted on this. It still works, though, as an update!
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30-04-2018
05:35
Hi Maru and Nat! This is funny timing as I've been meaning to post in this thread for a while. That's good news from you on the thumb front, Maru. I have good news on that front too. I had trigger thumb - it started several months after I started on letrozole - quite badly on both hands. It's gone, however, and I realised it had gone several months after I'd started long-distance cycling. I have no idea whether it had anything to do with the way I held my hands while on the bike but I thoought it worth reporting here anyway! I still have reduced strength in both hands and some swelling in the thumb joint on my right hand but it's not painful, just irritating. I've been on letrozole for two years now. I've just had a follow-up DEXA scan and all was fine. Good luck and best wishes to all of you.
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20-09-2017
09:46
This is very, very sad news but thank you for letting us know, Lavendar Blue. Tat enriched our lives. I wish her family well. If you can, pass on our very best wishes to them.xx
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13-08-2017
07:34
That's not good. Hope you far better on letrozole. I have a weird tale to tell. As I've said here, I developed painful trigger finger on my right hand several months after I started on letrozole in Jan 2016. It gradually got worse, to the extent that I could no longer bend my thumb at all. However, that meant it was no longer painful. I also developed it in my left hand and it evolved the same way. I decided just to live with it; it was inconvenient but not painful. Then in March this year I started long-distance cycling. Now, five months later, on my right hand has disappeared and, while I still have a bit of a ganglion, the movement is completely back to normal. I'm wondering if it has something to do with the position I've been holding my thumb in while cycling. I also have much more movement in my left thumb, but it's gone back to triggery and painful. As I say, weird.
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27-06-2017
08:28
Dearest Tat, Thank you for letting us know. It has been a privilege to know you. I will always remember your calm advice with regard to parenting teenagers. I am wishing you and your family the kindest wishes. Fondest regards, Maureen
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11-06-2017
06:28
Hi all! Yes, Bibi, it's been a while since this thread was live. That's great to hear on the mammo front. I have a six-moth check up tomorrow with the breast surgeon. I have nothing to report, I'm glad to say. Next 6-monthy Zometa is in September then 2nd annual mammo in December. All good on this front. Love and best wishes to all. xxx
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05-05-2017
04:02
Dearest Tat, Thank you for being so honest with us. My heart aches for you and your family. I am sending you warmest wishes and hope that you find strength and that you manage to enjoy and appreciate the love and affection that is no doubt coming your way during these very difficult times. xxx
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23-04-2017
07:51
Hi all... I just got an email saying there was a message from Tat but when you click on the link, it says the message you are trying to achive is not available. Are we all getting the same message? Tat, I'm wishing you warm thoughts. xx
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05-04-2017
07:28
Liz, I'm very sorry about your news. AC, hope your mammogram results were good. Tat, sending you warm wishes. AC, I agree with you on the value of this thread; it's been a real help throughout. And the advice from Tat re teen-rearing has been very comforting and reassuring! I'm only sorry things haven't gone well for Tat and I'm angry for you, Liz, with your latest news. Love to all.
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28-03-2017
08:39
Hello Tat, I'm so sorry. You'd think we of all people should know what to say but words seem so inadequate. Life sometimes seem very unfair and random and this is most certainly one of those times. I'm wishing you the best that can be wished for you and am sending you very, very warm wishes. Take care, Tat.
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13-03-2017
07:31
Logging in to say hello to everyone but especially to Tat. Thanks for the prompt, Bibi. Along with Bibi, I'm hoping the doxorubicin is doing a good job, Tat. Things are going fine with us. Hubby, boys and I had a lovely week's skiing over half term. Nice family holiday, with plenty of time together but plenty of opportunities for the boys to go off on their own. I had my fourth cycle of Zometa today; remember that's to reduce risk of recurrence in bones and to reduce risk of letrozole-induced osteoporosis. Been six months since my last one. Felt very strange to be back in a chemo unit. Still putting lots of effort into keeping fit. Doing the London Surrey 100 mile bike ride at the end of July for Breast Cancer Now. A big challenge but one I'm massively looking forward to. Wishing everyone warmest wishes.
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21-12-2016
12:55
Good to hear from you, Carole. Glad your early-year panic was just that. I've had three cycles of zoledronic acid now and I really have to say that in terms of side-effects, other than some bone ache after the first one, I honestly wouldn't have known I'd had them. Sorry! Hope you fare better with your future cycles. Your anecdote about your daughter having calmed down now she has a boyfriend is funny. My two boys are close in age and I'm afraid are very much partners in crime. Bring on the girlfriends! All the best over Christmas and for 2017 too! xxx
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21-12-2016
12:44
Hi tat, Good to hear from you and thank you so much for your reassuring words on teenagedom and parenting. I really, really appreciate that. The hip pain is indeed subsiding. Thanks for the good wishes on that front too. I'm massively keeping my fingers crossed that the doxorubicin works for you, tat. I had f our fortnightly sessions of doxorubicin & c yclophosphamide in combination followed by four fortnightly sessions of paclitaxel on its own. If the antinausea meds they give you initially aren't strong enough, demand Emend (aprepitant). It must be good to have your family around you at this difficult and uncertain time. I'm hoping you will be able to take strength from them. Sending you very warm wishes now and for when the next round of treatment starts... and good luck in Dorset with the Aga! Brave x
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18-12-2016
11:01
Hello everyone! Just thought I'd log in to send everyone best wishes for the coming festive season. I'm loaded with a cold, but had a clear mammogram and ultrasounds on Monday (my 1st since my op last yr on Dec 19). I mentioned a pain in my hip that had been coming and going for a couple of months to the consultant who gave me my results and he whisked me in for a bone scan two days later. Said he'd been in this game long enough to know not to leave anything to chance. It was all clear on the bc front but I have some early arthritis in my lower back and knees that could be causing the pain in the hips. Am on high-dose ibuprofen for a week to try and reduce inflammation. Given what it could have been, I guess I should be grateful. I'm still playing tennis and running, work is good and generally I've been doing ok but I am still finding things quite tough in terms of keeping that fear of recurrence in check.. My boys are proving difficult.There's a lot of, how should I put it, experimentation and partying going on. I find it quite hard to handle. I'm looking forward to a quiet Christmas. How's everyone? It's tricky, isn't it? Sometimes you don't want to ask how people are because you're scared of the answer. But you know what I mean, we were all in the same boat. Sending very warm wishes to you all. xx
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