Starting on targeted breast cancer meds.
Hi all, hope you are coping well with your situation🙏. I am 12 years on from right sided mastectomy and SN biopsy. Last year I started developing cancer in the lymph removal scar, which spread up my arm and down my chest wall. Had it treated with radiotherapy 4 months ago. My onco radiotherapist said the treatment had gone well and he was pleased with the result. However, the CT scan showed a nodule in my left lung had doubled in size from 8mm to 19mm in 6 months. I have been referred to the thoracic clinic who wants to do a biopsy, which I think seems rather risky. Also the lumps in the skin under my arm and on my chest wall are coming back. My right arm movements are somewhat restricted. It is hard to pull a jumper off my body! I am considering starting treatment with CDK4/6 Palbociclib, Tamoxifen or AI Letrozole. I also have Osteoporosis. So, I would be very grateful for any response from anyone who have used these meds and what was your experience . For instance did you loose hair, were your bones affected, were you able to live a normal life whilst on them and how long have you been on them. Thank you for taking the time to read this and I would be most grateful for any responses🙏🙏🙏🙏
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Hace 20 años tuve un pequeño tumor en un mama que me fue quitado,junto con 10 ganglios,pues en el análisis hecho en la operación,no se encontraron ganglios contaminados,pero si el primer ganglios en los análisis hechos posteriormente. Me aplicaron rayos,en corto tiempo ,pero muy intensos y luego 5.años de tamoxifeno.Muy pronto los calambres en mis piernas eran insufribles y yo suponiendo que el tamoxifeno era la causa pedía al medico que me liberase de ese medicamento.Solo me permitió dejar de tomarlo,5 meses antes de lo convenido.Tres o cuatro años más tarde sentía algo extraño en el empeine de mis pies. Me parecía siempre que mis sandalias o zapatillas estaban desabrochadas y yo trataba de ponerlas bien. Y de a poco está sensación fue en aumento y muchas veces tenía la sensación que se me cruzan los pies y no los dominaba bien. Esa fue en aumento y hoy camino moviendo los pies de manera poco controlada y poco los siento.No diferenció ya si estoy parada sobre una superficie fría o caliente.
Pero no tuve nunca dolor. Solo espasticidad en aumento. Y una insensibilidad que llega hasta la rodilla,pero no de una manera .
Agradezco que nunca sentí el más mínimo dolor.
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@mecha
Sorry to hear about your health issues. I'm curious if you have any other medical conditions that can explain the foot/leg numbness and spasticity that occurred much later. I have numbness in my feet, temp issues, but it's from a rare hereditary neuropathy and now I also have diabetes so diabetic neuropathy may be contributing as well. I had the numbness issues long before breast cancer or related treatment. I will say that once I went on Kisqali and Letrozole, my pre-existing random neuropathic pains increased in frequency and location, but that's because my neuropathy make my nerves highly vulnerable to damage. For that reason, I can never do chemo.
Went through same thing a year ago. My tumor was a little larger and grade 2 but I went with lumpectomy and sentinel nodes. They did give me Tylenol with codeine but I only used it the first day or 2. Didn’t really need it. Only pain was when wraps came off to shower (pressure bra and ace bandage) and that was alleviated with rebandaging. By 2 weeks when they started removing wraps I was fine and needed no pain meds even without the wraps.
I’m so sorry you’ve been through so much! Thanks for sharing your story. I’m also a brca2 and planning to have DMX next year. I had lumpectomy before I found out about my gene mutation. I wish you all the best. ❤️
@myoga
Sorry you have to go through a second surgery. How long after your lumpectomy did you learn about the BRCA2 mutation?
After reviewing my family history, my surgeon suggested gene testing. I found out about it a month later and couldn’t bring myself to go through another surgery. I think I’m ready now. I don’t tolerate pain well but I know I have to do it. It’s been 2 years since my lumpectomy (it was excisional biopsy but the margin was clear).
@myoga
Sorry they didn’t test you in the first place. I have had unbearable pain from my abdominal surgeries, but not so from my mastectomies. My surgeon put in an anesthesia pump that lasted the first 3 days post op so I felt no pain. I don’t know how the pain would have been, but after 3 days I still didn’t have much pain. I did have major issues with my arms freezing up (not everyone does) so do the recommended exercises to keep things working. I did have to do PT for that, some lymphedema and cording but PT really helped. Ask about the anesthesia pump. Prayers for you.
@californiazebra
Thank you so much for your advice. I certainly will ask for the pump. I heard that nerve blocking is good for only a day. My insurance is with Kaiser so I don’t know if my request will be accommodated.
Thank you all for your support. 🙏
@myoga I had a paravertebral block that lasted 3 days as I remember. I didn't need any pain meds, which have made me really sick in the past.
@windyshores Thank you! Three day without pain is what I hope for.