Starting on targeted breast cancer meds.

Posted by ginny100 @ginny100, Aug 13 4:49am

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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@kblioce

I’m sorry you are going through this! I can only comment on Tamoxifen because I did not take the other drugs you mentioned. First, let me give a little of my background. I was diagnosed in 2014 with Stage 4 breast cancer mets bones. I took Tamoxifen for 6 months. I did lose my hair (which I knew was going to happen and I was ok with that). I have to say I was never sick a single day while taking it. I was tired but that was nothing unusual for me. I’m blessed to say by the end of 6 months, I was cancer free (NED) and have been for 10 years. Prayers to you

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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

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.

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@kathyoung

Can someone share with me their experience with a lumpectomy please? I’m schedule for one next week, having a sentinal node biopsy at the same time. Has anyone had both done together. I’m told I’ll only need Tylenol and Advil for pain after?
I had a colon re-section 3 years ago and followed Mayo Clinic blog for that. I find it so helpful. If I can help anyone with that experience , just ask.
I’m terrified this time. My tumour is 1.6 cm not sure the stage. The biopsy said stage 2 but I know they really need to look at the actual tumour once it’s out

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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.

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@californiazebra

@ginny100
Regarding a lung biopsy:

Did they tell you how your biopsy would be performed? With a needle from the outside or how? There are many methods to do lung biopsies depending on the size and location of the tumor.

I had a lung biopsy due to my rare neuroendocrine lung cancer (not related to my breast cancer). Mine is very slow growing cancer (Ki-67 2%). They first discovered over 50 tumors in both my lungs back in 2008 with a CT for chronic bronchitis. They wanted to do a biopsy, but the largest tumor was buried deep and only about 1 cm then and they couldn't reach it with any certainty any way except to filet my chest and lung and I felt that was too much to go through and recover from so I declined. They were guessing it was either metastatic cancer with an unknown primary cancer or it could be something benign. They were baffled. I was not going through a major surgery just to hear it was benign.

Fast forward to 2020 when my breast cancer came back. The largest lung tumor was now 2.6 cm and they said they could now successfully do a needle biopsy from the outside. They insisted on the biopsy to see if it was related to the BC. I anxiously and reluctantly agreed. I was as concerned as you are. The biopsy took about 45 minutes, 8 tissue samples, while I was awake. They went through my back into my lung. It hurt some, but not unbearable. Note that pain meds and sedatives don't work on me. It was not a pleasant procedure, but doable.

There was a 15% chance of getting a collapsed lung and I did get a partially collapsed lung afterwards. That caused chest pain, severe fatigue and breathlessness, but healed up in about a week. Again, doable. I was borderline of having to go in the hospital so I chose to stay home to heal. I just had to go for a chest xray every day to monitor. I did not need a tube inserted. I later had microwave ablation to successfully destroy the largest tumor and that also resulted in a partially collapsed lung, same story. They believe the reason I likely got the collapsed lung both times was because I had a chronic cough and they think the coughing didn't allow the opening in my lung to heal.

There is an 85% chance you will not get a collapsed lung. Ask about that. Maybe procedures have even improved in the past four years.

A biopsy will tell you if the tumor is related to the breast cancer or not. It may not be and, if not, the treatment may be different. It turned out not only was mine not connected to my breast cancer, and not only was it a rare neuroendocrine lung cancer, but I also have an even rarer condition called DIPNECH (only 300 documented cases) that is what causes me to have so many tumors and all the respiratory issues of chronic coughing for 30 years and shortness of breath misdiagnosed as asthma. The DIPNECH is why 20 doctors over 12 years couldn't figure out what was in my lungs until the biopsy. Most doctors still have never heard of it. I can't have my lung tumors resected because there are so many tumors scattered across my lungs so we'll just destroy any that become 2 cm or take off from the pack as those are more likely to metastasize. Most are 1+ cm now. I have advanced DIPNECH, but after all these years, my neuroendocrine lung cancer is still considered stage 1 since it's confined to my lungs.

Please share your decision and outcome. Prayers for a good outcome all the way around.

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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. ❤️

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@myoga

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. ❤️

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@myoga
Sorry you have to go through a second surgery. How long after your lumpectomy did you learn about the BRCA2 mutation?

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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).

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@myoga

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).

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@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.

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@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. 🙏

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@myoga

@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. 🙏

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@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.

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@windyshores Thank you! Three day without pain is what I hope for.

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