Bone Marrow

[HbbM]

Can you tell me what you’ve experienced with bone marrow involvement?

How do they know it’s reached bone marrow? What tests? Does it change the medication options? Transfusions not an option for me. What else can help?

My B12 is very low. RBC is always just below normal but hemoglobin is always just above normal so oncologist not concerned but I’m suspecting anemia from bone marrow issues.

I’ve done a search on this page and found good information but just wondering if anyone else has dealt with this and how they detected it and how they treated it.

[Kerryd22]

I haven’t had the experience but I talked to a lady at my clinic and she had been in the week before and had been given a blood transfusion. She expected she’d get another that day. She told me that they deduced her bone marrow was now impacted by the cancer because of her blood tests results. I don’t know what happened precisely because I never saw her again although I’d seen her regularly up until then. We’re at a clinic where treatments for stage four are palliative only. So we won’t have surgery for example, although we have plenty of treatments but they must result in decent quality of life because the aim is to improve our life not make it harder. A blood transfusion is a temporary solution but it’s only to find out if the marrow is now fully involved rather than the blood counts being down due to medication. My file is marked clearly that I don’t want a blood transfusion and the oncologist highlighted that so I won’t even be offered a transfusion. As she said asking me to have a blood transfusion when I don’t want one wouldn’t make me happy 😊.

There are options to raise both red and white cell counts that aren’t blood transfusions but they are expensive. Each injection here is $800 and that’s considered too expensive for everyday use apparently. That’s what my oncologist told me but any time medications have impacted my blood counts an extra week off the drugs have been enough for me.

I think the treatment you are offered will depend entirely upon where you live. While we have universal healthcare it doesn’t mean that everything is entirely free or available. I think it’s similar to the NHS but I’m only going by what I’ve read. In America you can get anything that you can afford or the insurance company will pay for. While we have private health insurance it doesn’t cover much more than Medicare does. It just costs more and it gives you a choice of doctor - within reason.

Sorry I just reread your post so came back to add that Turkey Tail mushroom supplements are said assist with building up white cell counts. It’s taken as a tea once a day. It’s not cheap and you need to be sure if it’s provenance as most comes from China and it can be affected by heavy metals. It needs to be grown on wood. Suppliers will provide the details of how and where it’s grown because it’s a known problem.

All the best

Kerry