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Joeyaff
Member
since
01-11-2018
23
Posts
9
Hugs
3 weeks ago
Hopping on to some of these questions to save overwhelming our fabulous Breast Nurses. I am 3 years post Lumpectomy, ANC, chemo and radiotherapy now taking Letrizole after bad reactions to Tamoxifen for 18 months. Have cyclical fatigue - 2-3 weekly - and various issues with lymphodoema in my anc arm and breast area, tendinitis, vaginal atrophy and back pain from the chemotherapy. I have noticed my body takes much much longer to repair itself - a razor cut on my shin can take up to 6 weeks to heal fully, I bruise really badly etc - so I too am wondering if I would be better staying home as much as possible to avoid this nasty virus. I read this study which seems to suggest that people who had my chemo regime (FEC/Docetaxel) would only return to 64% of pre chemo immunity? J
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3 weeks ago
Just hopping on here as I too am wondering how long the fatigue can last having the same kind of timeline as you Louise. I changed from Tamoxifen to Letrizole after 18 months which helped with the overall low low mood but I still get overwhelmed and lose my appetite for a couple of days every fortnight.... jx
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29-02-2020
09:57
Hi there There are so many things we have to battle to stay cheery aren’t there xxx I was on Tamoxifen for the most miserable 18 months of my recovery and they changed me to Letrizole in November 2017. I suffered almost permanent pain in my joints and under my shoulder blades. Just miserable. I find the brand Accord gives me the least trouble and 18 months on the pains are subsiding. I still have pains in my hands and legs when I wake up - it takes me the length of my landing to stand up straight!! But with paracetamol they are manageable. I noticed a big difference when I started taking Vitamin D and Calcium and Yin yoga and swimming really help too. Hope yours reduce sooner rather than later as the drugs are very good at what they do - it’s just a pain with all the side effects xxx
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27-02-2020
11:50
Pretty tough is an understatement and a half. It is total crap but it has taken around 3 years and I am beginning to feel like me again - occasionally. You will get there - just don’t feel obliged to be brave or stoic all the time - we Breast cancer women go through the mill big time even when the cancer has gone xxx
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27-02-2020
08:10
Hi I have found the side effects reduce as time goes on - I take Lyrica and Ibuprofen for the pain which seems to work. I also found Vitamin D with Calcium helped.
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27-02-2020
08:07
1 Hug
Anyone else been prescribed this. The Gynae Consultant prescribed it for vaginal atrophy caused by the Tamixifen and Letrizole I have been taking. Just concerned because my cancer was ER+ and the drug has oestrogen in it. I have to assume they know what they are doing but am worried when I think about it..
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27-02-2020
07:56
Hi I had the Zometa drip every six months for 3 years as did my Mum who is 84. I didn’t have any side effects but my mum has nausea from the calcium she had to take. I was and am prepared to do anything to try and make sure it doesn’t come back 😮 😮
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29-05-2019
10:38
I just asked my Pharmacy to make sure that I always had the Accord brand a small I haven't had any hair loss or mood changes as a result of taking this brand of Letrizole - if your chemist is refusing to order a certain brand then I would recommend yo either move or threaten to move and see if that helps. Xx J @Tina Hailstone wrote: How did you manage to get the make you want?
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29-05-2019
10:36
Do you have the bone strengthened as a six monthly drip? Or more regularly?
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15-01-2019
12:07
Hi Armaghgirl I was diagnosed Feb 2016 and during that year had Lumpectomy, ANC, Chemo and Radiotherapy. I was on Tamoxifen until a couple of months ago but have just started Letrizole to see if that is any better for me. I am still taking quite heavy pain relief - had managed to cut it down but the joint pain I am getting with the new drug means I am taking more again. I was suffering quite badly with anxiety so am on medication for that too although now I have discovered a fab yoga community I am starting to feel better about reducing that. But the one thing that has never improved has been the regular bouts of fatigue with anxiety and the foggy chemo brain. Clearly I do have good days but I could never pass a memory test I am sure. I cam on here to find out if anyone else is still experiencing fatigue and fog - so in some way I am glad to have found you as it means I am not unique. The web suggests it only last months after chemo but I am now 18 months on and in some ways feel just as bad. Did you have a strong reaction to your treatment - get lots of side effects? Sorry that isn't any help but at least you know you are not alone.
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19-11-2018
09:54
Thanks for that - I am hopeful not to have every side effect going on the letrizole 😀
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01-11-2018
06:47
Hey ladies - this is my first visit to the forum - I was always too scared to incase I read something that set my brain off into overdrive with worry! I was diagnosed in March 2016 and had a Lumpectomy, ANC, chemo and radiotherapies and then onto Tamoxifen. It really doesnt suit me but I have given it a good try - over 18 months of feeling every day as though I had a major dose of PMT, plus fatigue in a 2 week cycle, neuropathy in hands and feet, tendonitis all down right side joints and dont even get me started about the state of my vagina!! No chance whatsoever of being a lover who had cancer like the advert shows!!!! I had to give up work after being back for a year as I couldnt plan anything - never knew on what day the wave of fatigue and nausea would hit and keep me bed bound. Have just had a 7 week holiday off Tamoxifen - and had the best month since my diagnosis - and blood tests show I am now through the menopause so have been prescribed Letrizole. Now I am reading the side effects from that and thinking am I jumping from frying pan to fire??? Is Letrizole more gentle - am I likely to ever get my sex life back? Is it mainly joint pain thats a problem? Am happy to take whatever drug I need to so I can stick around for my kids but I thought I was getting a better option.....????
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01-11-2018
06:30
1 Hug
I was so freaked out by my diagnosis I couldnt read anything - this is the first time I have been brave enough to come on a forum and I was diagnosed in MAy 2016 - so well done you having the guts to read any of that stuff. You are a lot braver than you think. But if it isnt doing you any good then maybe do what I did - get a close friend to read it all so that when things happen she can confirm if it is a normal side effect or not - she can filter out the noise and just give you the headlines to watch for.
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01-11-2018
06:23
I found ginger ale was good - especially towards the end of the week when the old tastebuds disappeared!
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01-11-2018
06:19
2 Hugs
I was devastated to be told I would probably lose my gorgeous funky purple hair when I started chemo so I decided to definitely try the cold cap to keep my hair as much as possible for me and the kids. The first treatment was hard, and it left me with a migraine for the full first week on top of the steroid side effects but worth it. Sadly when I went back for my second treatment the chemo nurse told me I had lost more hair in the 3 weeks than some people do over the whole chemo regime - without the cold cap!! She said it clearly wasnt working for me and agreed wiht my husband that it wasnt worth the extra discomfort and time. Sad for me but some people just do not get a positive result. Seeing what some people here are saying I would say give it a go on your first chemo and see if it works ....if you are one of the lucky ones it is one thing less for you to feel crappy about!!
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