Anyone with bone marrow involvement? - SHARE Metastatic ...

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Anyone with bone marrow involvement?

Olha profile image

I have stable bone metastases (since July 19) on Letrozole and 75mg IBrance (3 weeks on 2 off due to low neutrophils) with Primary in 2010. My haemoglobin is dropping quite quickly last 2 months, will have to have a transfusion next week, and now neutrophils and platelets also dropping despite holding IBrance last 6 weeks to see if it was the drugs affects.

My liver AST also rising and LDH and ferritin but all other blood markers normal and liver is fine. Cancer was in my marrow back in 2019 so feel it must be some activity in marrow, bone scan 3 weeks ago still stable. My oncologist not interested in LDH or ferritin but now looking at AST.

Any thoughts or experience gratefully received!

My best wishes, Kate x

11 Replies

My right hip and femur joint was 100% cancer through the marrow when I had a scan and MRI in August 2020. I had five small doses of radiation and it has cleared up along with the pain which really hadn't been that bad.

Thank you for your reply. Has the cancer in the marrow affected your blood counts - the haemoglobin for example?

My blood counts are all normal which stuns my team at the cancer center ...all but my CA15 which is ridiculously high. I am on Xeloda now and hoping it will knock those down.

May I ask what your CA15 counts are? Also, do you do CA 27-29, and if so, what are those numbers?

I don't post them because I don't want to freak anyone out. My CA-15 started at 636 in 2019 and was over 8000 (yes thousand) last visit - hoping Xeloda will change that.My other similar test is CEA and it started at 3.4 and rose to 9.9 last visit.

Wow that is indeed a high number.....I can just imagine the looks on the lab personnel that do it. I'll bet they always think they made an error and ask someone else to double-check. Hope Xeloda works for you too.

Sandra

yep Doc asked if I was trying to go for a record

I don't want to beat your record, but I'm close behind @ 7769. Onc has no clue why. Will be doing a liver bio to try to get more insight. However, I have progression in both bones and liver so that could be it.

girlsptz profile image
girlsptz in reply to SoCalLady

Those two tumor markers(CA 15-3 & CA 27-29) are interchangeable and it isn't typically beneficial for them to monitor both.

Sandra

i have similar mets in my bones and take letrozole and ibrance 125 mg. my numbers have been good since i started in 2017, with an occasional dip in the white blood count. when that happens i take a week off the ibrance to let the wbc build back up. after full bone scans in december, my mets remain stable and i can live with the side effects of the ibrance, so here i'll stay for now. 😀

Bexly profile image
Bexly in reply to howsthis

My story is same as yours.

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