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.
Tamoxifen side effects
I've been taking Tamoxifen (exemestane) for 3 weeks now. The hot flushes are manageable but the pain in my joints and muscles has been pretty bad. I was told it usually peaks at 4 to 6 weeks? Does it get easier then or just plato? Circulation seems to help but by the end of the day I'm sore and tired and the last thing I feel like is exercise. Nights are the worst, I'm not sleeping well and after a while laying in bed because pretty painful too. Does it get better or do you get used to it? It started mostly in my legs (feet, ankles, knees then into my calfs) and then my groin. Now my chest, elbows and wrists have started? My journey has happened quickly, 8 months since diagnosis, chemo, surgery and radiation. Stage 3. They said this is my best shot so I want to make it work. Does anything make it easier? Hemp oil? Vitamins? Anything?Dandruff
As the Letrozole and my chemo induced menopause have dried me up, and as my hair has regrown, it appears I have dandruff for the first time in my life. Cancer, the gift that keeps on giving... I really don't fancy spending money on anti-dandruff shampoo if there's a home remedy or two I can try. Anybody have something they can recommend? Thank you! K xox
Hormone blockers
after surgery and chemo I began hormone blockers in dec 2017, tamoxifen made me a crying mess. Started on Letrozole the joint pain became unbearable, I had a break of a month and pain went just leaving me with the neuropathy pain in hands and feet. Have stared Anastrozole, and joint pain really kicking back in. Is there nothing we can do??? Is this horrible pain in EVERY joint in my body my lot for the next ten years?????!?
Tamoxifen and toe nails.
I have been on Tamoxifen since April 2016 and my toe nails since chemo have always been a little odd. Often growing in a raised ^ rather than a nice curve. Lately both my big toenails are receding in the nail beds and I have lost half of the nail attachment in a matter of a few days. If it continues I will end up losing both nails. It is not painful although I do still have a bit of peripheral nephropathy on some toes. Could it be my body has had enough of Tamoxifen? Walking bare foot on the beach in the sun while on Tamoxifen wouldn't be killing the nail beds would it? I had it during chemo but not since then, until now.It's Letrozole For Me
Saw my oncologist this morning. She is giving me two to three more weeks to heal from the BMX & reconstruction and then it's on to Letrozole for 7 - 10 years. She said it makes no difference which AI I start on and alternates with each patient! She said seven years but it may be 10 as there are three clinical trials due to mature in that time. She said that it will almost certainly give me stiff joints which I'll have to manage with exercise & supplements like krill oil. She reported that other women have had success with turmeric and other supplements. I will work through all recommendations in my own clinical trials. Suggestions welcome! As I'm only (ha!) 51 and was still menstruating when I was diagnosed, she'll monitor my ovaries with blood tests every three months to see if they show any signs of trying to get me to do so again. If they do it's a monthly injection of Zoladex into the belly. Oh joy... The exercise physiologist at the BCNA Life After Breast Cancer information night was very interesting and informative. So I'm starting to plan what my exercise regime is going to look like. I think maybe something like yoga once a week for stretching and stress management, weights twice a week for warding off the osteoporotic side effects of Letrozole and improving my metabolism, and walking for at least an hour six to seven days a week for cardio health, fat burning and joint stiffness. Does that sound about right? Apart from being a massive time and money soak that is...
Fibromyalgia and Aromatase Inhibitors
Hey Everyone! I've been on Arimidex for about 14 months now and side effects have been quite debilitating in terms of joint, muscle pain. I came off as recommended for 6 weeks and kept a diary for my Oncologist, I am yet due to see him but the symptoms reduced dramatically. I know there are alot of women who suffer side effects and there are some women who also suffer NONE! I was diagnosed with Fibromyalgia about 14 years ago, as the years went on I forgot all about it and got on with life, lets face it who has time for it right?? My Medical Team said I suffered so badly through chemo due to Fibromyalgia and that for some reason it affects sufferers badly. I didnt think about it as I said I forgot all about it, it doesnt rule my life and I put up with pain. The other alarming thing that has come to light is and why I want to share this is, if you have FIBROMYALGIA any Aromatase Inhibitors such as Arimidex actually make the pain worse. I thought it worth mentioning to anyone else out there who has this and if you are suffering on medication this is most likely why. The answer??? I honestly don't know but will talk to my Oncologist, I know Magnesium is important with Vit D. but since going back on Arimidex the past 2 weeks have been horrific in terms of pain...and finally I worked it out. Melinda xo6 Weeks trial off Arimidex has finished as requested by Oncologist....
Hey All, So 6 weeks finished off Arimidex and I wanted to let everyone know if there was or wasn't any difference at all. The first 2 weeks there wasn't anything noticeable, but as the weeks went on it was very noticeable. I had no struggle getting out of bed in the morning, I did NOT walk like I was on hot coals, I DID NOT have pain in my feet. I found I was walking in general so much better, my all over joint pain I had was not there. So safe to say, Arimidex was causing all my symptoms on the tail end of Chemo side effects. I don't see him til May in which he wants to discuss and then he will suggest to switch...I'm thinking really??? to what?? bit concerned...especially with my Optometrist appointment today showing I have a drastic deterioration in my right eye in 7 months and the question was asked am I on Tamoxifen, I said NO due to recurrence but I am on Arimidex.
Treat post Breast Cancer vaginal dryness with the purest lubricants
Manufactured in England, the water based moisturiser is the first certified organic product put on the NHS in England available on script from doctor. Unfortunately, we don't have vaginal moisturises available on script in Australia. From what I have been advised from BCNA Policy they do not believe worth pursuing an application for vaginal moisturisers to be made available on script here in Australia. For anyone suffering vaginal atrophy and unable to treat with estrogen pessaries/creams (on script) I suggest you have a look at these products. They cannot reverse vaginal atrophy the same as estrogen but some ladies on this site have found they definitely help matters. Vaginal moisturisers are best used every 2nd or third day, the pre-filled applicators can be very expensive so if you can afford them these products are worth a try (I think they have free samples). Just check out the site. Always remember to run list of ingredients past your doctor. https://www.yesyesyes.org/breastcancer/ For further information this is an article written by Susi Lennox, co-founder of Yes which was published in a Newsletter for the charity, Cancer Options UK www.canceroptions.co.uk. You will also find some extensive feedback from customers from all over the world on their testimonial page https://www.yesyesyes.org/why-yes/customer-expert-testimonials/?cat=7 I buy direct from Yes as I think it cheaper however if looking to buy in Australia you may have some luck from the following companies: http://www.greenorganics.com.au/ https://organictrader.com.au/catalogue/
2nd Year check up
Hi all, It has been awhile since I was last here - and that is a good thing, but it is still very awesome that I am still able to come back and talk. Today I am off to the oncologist for my 2year check up. I have had my mammogram, ultrasound and blood test. Today I will get the results of all this and to work out the 'what next'. And there it is ' The WHAT NEXT' - it just doesn't seem to go away, just changes. I am better with the scans this year, at least I wasn't in tears booking them - so hopefully next year no tears at all. There probably will be some today, as going back into a space that you never want to go back to is daunting, especially as I lost a friend this year to another cancer and we both had the same oncologist and chemo ward staff. This is going to be a massive challenge but I will take my music, and her courage, strength and humour with me. I am unsure of what will happen, and after having had a parathyroidectomy knowing that I may have to change to a tablet that will affect my calcium levels, and possibly give me bone joint pain is not fun as I have just got rid of all that. I have also got used to the tamoxifen so changing is not one thing I would like to do but if I have to then so be it and on another adventure we go. Also just wondering does anyone have the sensation in their feet and hands that they get numb tingly fingers and toes, and can't feel them. I have almost cut my thumb off three times - the third should of had stiches but managed to heal. I have also walked around the beach area in summer with no shoes on (have done this since being a kid) and didn't think to much about it, until the next day when I had two giant blisters one on each foot. Mental note: make sure wear thongs this summer. Over all, very happy with how things are going and only moving upwards from here. I have finally started to foward plan (been a massive issue - still is but getting there) and have re thought work and work hours and work stress. So hopefully in the next couple of years, or sooner, it will pann out and I can be happier, more me and able to spend more time with my friends and family. Will up date you later on when I can. Thank you to all those here as this is an amazing space and a safe place to talk and share and vent.