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Cording/axillary web syndrome
Hi everyone, it's been a long time since my last post and so much seems to have happened in my life in that time. After having a lumpectomy and axillary lymph node removal on the right side, July 2024, I undertook chemo and radiation. Since then it's been medication treatment with Letrozole (hormone lowering) and Verzenio (cancer blocking). I've undertaken some gym working, focussing on weights to build bone strength but still have residual side effects from all the treatments. I've been to my lymphatic physio yesterday and she informs me that I have axillary web syndrome which is travelling from my affected breast down the fascia of my ribs. Quite painful! And after her massage (sounds nice, but wasn't! š©) I was wondering how many of you might have had the same? Do you have any tips that could help me please? It's lovely to reconnect again and hope to hear your story. āŗļø Jo
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 donāt 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%. Iāve 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 Iād 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 whoās been on Abemaciclib for a while to know if side effects improve over time. Thanks JenniLetrozole - compound pharmacy
Hello I was wondering if anyone has had any luck with getting Letrozole made by a compounding pharmacy to reduce the fillers and preservatives that come with the commercial Letrozole? I am about to start Letrozole and am trying to minimise side-effects as much as possible from the get-go to increase my chances of staying on it - I am very sensitive to meds, preservatives, etc. With that in mind, Iām very interested in hearing peopleās stories and experiences with compounding chemists and hormone therapy. Thank you all :)My armpits feel like they are coated with ADHESIVE!
Hello, I had a mastectomy and lymph node removal two weeks ago . The last few days the most annoying side effect, my armpits feel quite sticky. I have regularly cleaned, tried using and not using deodorant and even moisturising cream. None of which has worked. Did anyone experience this? if so how can I get rid of it?
Regrowing hair
This possibly sounds silly and vain however, I am looking for advice on regrowing my hair post chemo. I have been looking online but hasnāt been helpful. The first hair that came through was grey and crazy and is now an inch long and there is a black āsheenā coming through now. Should I get number two all over to tidy up and have hair all same length and then start growing OR just persevere until it gets some length and then deal with it. I have mostly been accepting the au natural look which is looking very nutty professor at the moment. thanks in advanceBone and join pain side effects of chemotherapy
Hi, Iām new to this group and have only just started chemotherapy. Iām experiencing strong bone and joint pain from the chemo and wondering if anyone could suggest ways to minimise this. Iām taking Panadol but it doesnāt cut through. Im also doing the scalp cooling treatment. Iāve been advised to wash my hair only once a week. Does anyone have any suggestions on how to keep it looking fresh? It looks very greasy and bedraggled.
Letrozole - aches and pains continue
Last year I was switched from Tamoxifen to Letrozole. At first I was feeling okay on the Letrozole but then I had a post menopausal heavy bleed (thats a whole other story), so had a medication holiday. When I resumed the Letrozole I started to ache and have body pains constantly, usually at night which resulted in ongoing fatigue. I saw my doctor who advised to stop taking the Letrozole - I was 4 years post breast cancer at this stage, so it was felt, as my initial prognosis was good, this would be okay. My issue is now, 6 weeks after ceasing the Letrozole, I still get the body aches and pains. It seems to be getting slightly worse. Does anyone have any experience of ceasing the meds and how long does it take to start feeling pain free?
Chemo treatment decision
I was diagnosed with IDC in my left breast in April 2025. I have had surgery and am now navigating treatment options. I had my tumour tested with the Oncotype DX test and it came back in the middle range for benefit of chemo being possible. I was hoping it would come back as either low score so no benefit or high score large benefit so I didnāt have to make the decision on whether to proceed. I discussed with my oncologist who was surprised it had come back as the score it did as he was convinced it would have been low. My tumour was 16mm had some lobular feature and DCIS and was also vascular but hadnāt got to the lymph nodes. So I do have an additional risk factor there. I feel like I want to know Iāve thrown everything at it so if it comes back I know I did my best as Iām a what if person. He supports this and my age he supports a decision to do chemo if I want to. I just want to hear stories of people who have had similar situations as I know the decision is individual based and that chemo wonāt be a walk in the park either. thanks in advance for any insights.Genomic Testing experiences
Hi all, Iām a 46 year old mother of two older teenage boys and was diagnosed with breast cancer in April 2025. I have since had a lumpectomy and sentinel node clearance and been advised I had Stage 1 Grade 2 invasive ductal carcinoma with lobular features with clear margins and no node involvement. My tumour was 16mm and is ER/PR positive and HER2 negative. I saw my medical oncologist on Friday and we discussed will be radiation and hormone therapy with Tamoxifen for up to 10 years if I tolerate it. My online prediction is that chemo will be of no benefit to me but my oncologist did discuss the genomic testing and that it was my decision as to whether I have it or not but if I did want to go ahead I would need to make a decision quickly as I am already nearly 3 weeks post op. I am looking for advice or peoples experiences as to if they were offered the test and what they did. I know everyone is different and that the cost would be prohibitive for a lot of people. We can afford to do it but Iām unsure as to if it is a good idea or not. thank you in advance for any advice or experience youād like to share and good luck with all your journeys xMastectomy/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.
