MARROW mets causing low numbers (RBC, WBC) - success stories?

simhansen

Dear all,

7.5 years since met diag.

Been mostly on endocrine therapies + xeloda and eribulin.

After 1 good year on Verzenio we have learned I have marrow metastases / marrow carcinosis. This means the breast cancer in the marrow is causing numbers to struggle to keep up (hemoglobin, ANC, platelets).

I believe this will call for aggressive chemo and maybe transfusions and neulasta.

Any succes stories? I am scared as heck and know it will be challenging. The good news is I have not received that much chemo so cells may be sensitive to Taxotere, Gemzar, etc....

My disease is very widespread bone mets + numerous (smallish) liver + marrow.

Will see a new onco tuesday who is a bigshot and hope he has an ambitious plan.

Please share success stories and how it was approached in your case. I need hope and information....

Nkb

Hi Simhansen- I hope that you have received some good options in the last few days. Good story follows:

I had something they called a MAHA reaction which caused my hemoglobin to go to 6.2, platelets to 45,000 and all my other numbers to plummet as well as the cells were all 3+ weird shapes- I was still making cells, but, my marrow was full of cancer that was destroying the cells I made. I had to get blood transfusions every 4 days for 2 months. This was after I progressed on everolimus and was changed to Tamoxifen- I also got a severe virus in February 2020 (possibly covid, but, will never know about that) which was a month after Tamoxifen was started. I was hospitalized and they did all sorts of lab and imaging. my TMs were 12,000.

I was started on Xeloda as an outpatient and my TMs descended rapidly- after about 2 months my marrow cleared and stopped destroying my cells. I think it was the virus that triggered this- but, it is speculation. I have had bone and bone marrow mets since 2017. At one point they were going to add IV chemo, but, I turned around without it.

So far I am progressing in bones at a very indolent pace and I am still on the Xeloda. DM me if you want more info.

good luck!