Abemaciclib Verezenio side effects
Hi Ladies, I have recently started on Letrizole/Hormone Therapy, and Verenio / Abemaciclib and am struggling with the side effects. I am in the fortunate position in that both these drugs are being given as a preventative measure. I don’t have Mets, but am at very high risk of re-occurrence. Originally diagnosed with bi-lateral early breast cancer back in March 2023. Had a small 1cm triple negative tumour, and a larger (5cm), more aggressive (grade 3) oestrogen positive tumour with lymph node involvement. After initial breast reduction to remove both tumours and additional auxiliary clearance, I had 6 months of chemo, plus radiotherapy to both breasts. I managed to keep fairly positive throughout these treatments, and while at time a struggle did manage to work albeit at reduced pace throughout. Just as I finished radiotherapy my oncologist recommended abemaciclibb as part of a trial that is showing reduction in recurrence rates of around 6%. I’ve only been on these for 5 weeks, and while the side effects are manageable, they are not a lot of fun - diarrhoea, fatigue, vertigo, and just generally feeling unwell. Hot flushes and insomnia with the hormone therapy which again are manageable and on their own no big deal, but the combination has me exhausted. I was soooooo looking forward to end of my active treatment and getting some energy back, getting back to working full time aswell, but now with two years ahead of me on this regime, I am wondering if it is worth it. Oncologists reluctant to reduce dosage and are keen for me to stay on the Abemaciclib, but I’d love to hear from anyone else is in a similar position and how you are managing the pros and cons of the treatment options versus quality of life, and from anyone who’s been on Abemaciclib for a while to know if side effects improve over time. Thanks JenniMastectomy/Diep flap reconstruction - What to prepare for
Hello, I am heading into hospital shortly for a Mastectomy with a DIEP flap reconstruction at same time. I am starting to prepare everything now, ie stocking freezer, ensuring I have everything at home ready and staying to look at what to pack for my stay in hospital (5 days). My Plastic Surgery has asked that I bring in post op bra and if I have spanx or similar bring that in. The bra was no issue I got ones from Kmart and Berlei. In terms of compression pants, I am at a lose. So much on the market, Any recommendations, do I go for underwear type, shorts or just stomach ones. I would be grateful for any tips.
Using 'the oil' for Exemestane side effects
Hi there, I'm curious to hear from people who've been using 'the oil' to treat side effects of hormone therapy. I've noticed people don't say the actual name of it, assuming it gets flagged?! To cut my long story short... Diagnosed in June, mastectomy in July, radiotherapy in August/September, and then started hormone therapy September/October. I'm on Goserelin every 28 days, plus Exemestane daily. I'm told this is the plan for the next 5-10 years. However, my joint, ligament and muscle aches are horrible! I've read similar side effects from others on here - where there's a joint, it aches, particularly overnight - I didn't even know elbows and knuckles could ache! My feet are so painful to walk on any time I get up from sitting/lying down. I'd heard a few people say the oil has helped them with these side effects. I've been taking it for 5 weeks now and am quite disappointed that I feel very little effect. I'm taking Altreleaf C B D 100 ISO - 100mg. I take 0.5ml in the morning, 0.5ml at lunchtime, then 1ml at 8pm. He gave me one containing T H C too (because I asked for it ;-) but I can't really use it as you can't have it in your system at all when you drive. I'm 46 and a mum of two young girls so driving is a pretty essential part of my daily life. I'd love to hear it others have tried the oil and had similar disappointment, or any success. I'd also love to hear from anyone who's been on Exemestane and changed to another drug - because I'm told it's brutal and not many women stay on it. I'm thinking my only option really is to switch to something else but worry it'll be the same! Thanks in advance!
Post surgery changes
Good morning, I have a quick question to any women who have had lumpectomy/s and where the surgeon removed fat from under the underarm area right side only for me (side boob) to refill breast/s. I had lumpectomy's on both breasts at the same time, early cancers, both hormone positive ILC & IDC over a year ago now. My question is if they have been left with what looks like a small 3rd boob to me under their armpit that protrudes out. I cant understand how an area that has fat removed from it ends up bigger than before. It is uncomfortable, causes rubbing/friction that I did not have to contend with before and finding a bra that covers the area so the excess bulk doesn't get squeezed out from and overhangs from the bra line is frustrating. I only have B-Cup breasts and never had to wear heavy duty thick/wide band bras before because I wasn't big or had a lot of fat in the side boob area. Since surgery & having the fat apparently removed to fill the area my small tumours were removed from, I am now left with a bulge that is very noticeable from both the front & back. I dont wear singlet tops any more because the bulge is too noticeable. Very disappointing because I was not told about this outcome, only that there will be scar/s, which I have & don't concern me at all. Having a bulge/mass sticking out from the side of your breast seems more notable to mention than whatever scars might be left behind. Had I known I would not have had my breasts "refilled" from the small tumours removed. Any lop-sidedness or unevenness if any would have been fixed with a bit of padding, which most bras come with these days. I feel I have acquired a 3rd boob that is very noticeable whether I am clothed or not. Has this been any one else's experience?Would like to chat to others
Hi all I am 6 months post bilateral mastectomies and still having a few issues. Haven’t been to follow up appointments because I am a nurse and hate being in the patient side. Haven’t been to also avoided all counselling as I feel there are women far worse off than me but would be good to chat to women who have been through the same. Emma
Newly diagnosed with DCIS - starting the rollecoaster
Hi all, I live in Geelong. I'm 41. Single mum to a 13yo son, co-parent 50%. I was diagnosed with DCIS estrogen+ on the 14th Feb. Luckily is stage 0, which eases my worries a bit. My mum and sister had stage 2, and they are in remission. So this gives me hope and keeps me positive. I am not scared of the surgery or radiotherapy...but just have lots of doubts of how is the process going to affect my ability to concentrate on my phd and thesis writing and my ability to work (part time teacher, looking for change in career). I'm considering taking an intermission from my phd, but I don't know for how long, and how I am going to support myself financially. Did anyone kept working or studying through the treatment? I'm a planner....but this doesn't have a timeline...and I think I just have to take a day at the time. I don't have a date for surgery and radiotherapy yet...I don't know how long is going to go for and how I am going to feel.....My guess is just go with the flow.....Hormone therapy and sex
Hello, it’s a bit uncomfortable to talk about but I can’t really find good tips. I’m only 29 and on hormone therapy. I have zero libido which I can even live with the problem is I have extreme pain during sex, I’m extremely tight, I start bleeding, it feels horrible that I started crying multiple times. I’m now extremely terrified of being intimate which makes it even worse. Every time I date someone and it’s about to get intimate I end things because im so scared. I tried lube etc. I can’t date anymore because at some point being intimate is part of it. And I’m too young to be single forever. I don’t know what to do it’s getting worse and worse. And I’m uncomfortable talking to someone I’m just dating about this, and obvisouly no man who is t invested in you yet will want to continue dating if you say you don’t want to be intimate. Does any of you have tips?
Docetaxel Side Effects FEC-D Long term side effects or menopause?
Hi all, its been several years since I posted on here. I'm hopeful someone can help. My apologies for my long post. I promise Im not a hypochondriac. I'm coming up to 7 years cancer free and should be living that life changing, "Im so greatful to be alive" kind of life. But I feel like cancer has added 20 years to my health. Anything that ailed me before treatment has amplified. My knees and ankles constantly ache. Its very hard to stand up from a seated position. I have neuropathy symptoms from the knees down. I randomly run out of breath. My hair feels noticeably thinner (it grew back white). My scalp constantly itches (no dandruff, just red) and I keep getting small lumps on my crown and the nape of my neck. I'm also getting re- occurring cysts in my arm pits, some have showed up in my breast during mammograms, but they come then go. Ive had chemo induced menopause for 6 years now. So much brain fog and vertigo. I now have osteoarthritis and to top it off, during my post chemo scans they found a lump in my skull towards the base of my neck which was deemed to intrusive to do a biopsy. At one stage I was told I would need yearly scans. I feel like its been put in the too hard basket. Ive been trying to get doctors to listen to my concerns for 2 years now. Ive also been trying to get a specialist to see me since June last year. I cant even get on their waiting lists. The team that looked after me during my cancer journey were absolutely marvellous. Now that Ive been 'signed off' help and understanding have been lacking. I'm on long waiting lists to have things looked at, living with the fear of re-occurrance is always at the back of my mind. Im going around circles with my GP but Im now too emotionally exhausted to make a change. I lived with anxiety and depression before cancer but now I feel it is overwhelming me. Ive tried counselling several times but I havent found them helpful. Dealing with this and lifes 'normal' challenges has really changed me. I have searched the internet for sites that deal with life after cancer. Trying to find out what side effects are common or potentially long lasting. How to treat them or how to deal with them. Are my symptons a result of treatment or is it a menopause thing? All the sites i find talk about treatment and short term side effects. Im hoping theres a site out there that might inspire me and give me back the drive to look after myself. Even a site for menopause after triple negative breast cancer would be very helpful(preferably an Australian site). Ive been told to avoid any hormonal treatment. Are there other options? If there is anyone living a similar outcome to me, what are you doing to help your self? How are you treating menopause after TNBC? Whats working for you? Thank you if you took the time to read my post, I know its a long one but i really appreciate it.
Hormone treatments, tamoxifen and tendonitis
Hi there, I'm very new to this, but wondering if anyone has experience of tamoxifen and tendonitis? I've had two different types of breast cancer, but one side was HER2Positive so since January this year I have been on anastrozole. In late July I got extremely painful tendon damage - a torn and swollen hamstring tendon near my seatbone, so it really hurts to sit, and two other gluteal tendons with tendinopathy as well - no idea what set these problems off, but discovered that anastrozole, in reducing oestrogen, weakens tendons. My Oncologist said suspend it, so I haven't been taking it since early August. She later offered me a script for Tamoxifen instead. As Tamoxifen also is designed to reduce oestrogen I am wondering whether I should switch to it or not? I don't want a breast cancer recurrence, but my life quality at the moment is much affected by the tendon problem which is not healing very quickly at all. It's going to take many many months I think. If I take tamoxifen now will I slow down the healing? What should I do? Anyone out there had any experience with tamoxifen and tendons? Thanks for any experience you can share with me!!!
Joint pain, muscle stiffness
Hi all I am 5 weeks post radiation for invasive lobul ar carcinoma. 6 lymph nodes removed. I am on letrizole. I started getting joint pain and muscle stiffness in my knees shoulders hips and muscle tightness. When I mentioned it to radiation doc she said it would not be from radiation to breast area. Has anyone experienced similar symptoms. I had a mastectomy. No chemo.