Utter shock. Bone mets with bone marrow disease.

Lillymillie

Hi everyone, can anyone help? Everything was stable on X and then it wasn't. Was told I had a few spots and all of a sudden my platelets have dropped to 60. They should be 100 but he said he can treat with weekly taxol. 10 is internal Bleeding territory. If I don't response to chemo they will stop treatment in4 weeks. Am in utter shock!!

Has anyone been here?

Iwrite

What a shock Lillymillie! Thinking of you and hoping they have a good plan to clear things up! I believe others have had some treatment successes with marrow involvement. Sending virtual hugs to you.

Husband11

Are you currently on xeloda (x?)? What makes them so sure it is proliferation of the cancer in the bone marrow, requiring a switch in treatment, and not simply suppression of your bone marrow owing to the xeloda (or whatever treatment you are currently on)?

Lillymillie

Thanks iwrite.

Hi Concerned Husband, I was on xeloda for 18months, cleared my liver mets and feeling great. Get scanned every 9weeks. Last scan on mid Sept showed new spots on bone in a few places. Onc was pretty relaxed and said we can manage this. He suggested 3 weekly taxotere. All went a bit down hill with my bloods. The platelets are sitting low. Suggested weekly taxol. No biopsy but haematologist confirmed that there is bone marrow involvement. They can tell from platelets being so low.

Husband11

While you don't want to waste time, I would want to be very sure that the xeloda is failing before dropping it as a treatment. I am sorry that you are facing this challenge. The next treatment could work well and produce lasting results. Don't lose hope.

Lillymillie

Thanks Husband 11, what do you mean make sure it is failing? My understanding from him is if new bone mets appear compared to the previous scan the the drug is no longer effective. I actually don't have huge amounts of bone mets. Weirdly I have faced so many challenges that I thought I'd never overcome and I have. My husband reminded me if this. I'm really hoping the taxol will help. I can maybe get a second opinion in London UK too.

Husband11

I just mean that it is positively identified as bone mets or worsening bone mets. Sometimes oncologist and Doctors in general make conclusions based on probabilities, that are later proven to be wrong. Imaging or blood tests aren't necessarily conclusive evidence. I've met three people who were told they had lung cancer, and only after a biopsy was that conclusion based on imaging proven to be wrong. Perhaps a biopsy makes sense, or maybe it doesn't. I'm no Doctor. But a biopsy alone is capable of conclusively determining the presence of cancer. Imaging and lower platelet counts are not. They are just suggestive. I am not sure what evidence your Onc is basing the conclusion on that the cancer is spreading.

Lillymillie

Thanks Husband11,

I nevered questioned it. I suppose I trusted him as he's the top guy here and the fact that he scans (ct and full body mri) me every 9 weeks and scan show new spots in different areas. He had suggested taxotere 3 weekly but since platelets are dangerously low he'd going with weekly taxol. I just hope it's not as grave as he thinks it is. I have had all sorts of plueral effusions and liver mets that the options he chose cleared them completely. I have to hope this is right too. I'll get a second opinion for one of the top guys in London too so we can see if there's anything else