Just left onc. today, this was 4th BMB onc. seemed pleased as no acute leukemia seen, #4 done b/c plts have been very low since middle of August in 20's - 30's, finally up to 127,000, but also noticed he was talking of transplant since over -due 6 weeks for consolidation, have ALL and afraid leukemia cells could break through, got copy of pathology report and didn't notice till left that last page shows "hematopathology specimen information" that states Diagnosis of Multiple Myeloma with samples submitted and flow cytometry states myeloma/plasma cell disorders, Dr never mentioned this and of course unable to call this weekend as not in till Monday to ask, to be admitted next week for chemo, but this scares me to death, could that have been b/c the platlets were only 19 when the biopsy was done or is it really cancer of plasma cells??, had thought before maybe ITP and would give prednisone, but know is not that, has anyone got any ideas of this???, last time dx said ALL in Sept with plts low, thanks for any advice
Hi Anne,
I was just wondering if you've tried to call your doctor's office - because there still may be someone on call over the weekends who could pull your BMB report up and explain it to you - I know I have talked to my doctor's partner on the weekends, and I've called my mother-in-law's cardiologist's office on the weekend and got connected with his on-call partner, who was very helpful. Or you could call the oncology ward at the hospital where he practices and see if someone's covering for him over the weekend that could speak with you. I'm thinking you have nothing to lose by trying, and you just might be able to connect with a doctor who can answer your questions so it's not such a loooonnnng weekend! Good luck...
- WBF
I am with Farm on this: you need to talk with someone who is directly knowledgeable about your situation. Remember to write your questions on a piece of paper so that you can keep your train of thought on track.
I did a google search for myeloma and acute lymphocytic leukemia. The results were spotty, but I did find that it is very rare for this combination to happen. Still, you need an explanation as to what is happening in your case, not somebody else’s. That's why you need to contact someone who can explain your pathology report.
Good luck,
Joe
Third vote for making a weekend call and talking to someone. We're not equipped to interpret these things.
Do let us know what you find out.
Blessings
Finally got an answer today from nurse of onc. about dx of multiple myeloma on hematopathology report of BMB, she assures me my husband does NOT have myeloma, said that must have been from a different patient and a mistake and this is why they do not like to give out copys of reports to families, although she is always very nice this does upset me, I believe those reports are of our bodys or our families and we have a right to them and even if I don't understand all the antigens, cytogenics, DNA, etc., I can read and find ways to determine what the words mean, I am also a nurse, so I do understand medical terms, although this is way over my head as I'm not a scientist or onc nurse who I have found also don't always understand markers, etc, maybe with children Drs sit down et explain things more, I also was unable to get in touch with any onc over the weekend to explain this, because the fellows of BMT are only on call and can not determine these reports, must be the attending, thanks for everyone trying to help me with this and Blessings to all, Annie
It's more the doctor than the profession. My docs have never hesitated to give me any report I asked for. In fact, they usually have them ready for me before I get around to asking. I haven't had an onc who wasn't willing to sit down and explain what's going on for me. Heck they'll usually answer questions about things I encounter on the boards that have nothing to do with my case.
If your docs aren't giving you the information you want and need, you might want to consider if that's the group you want to continue with when you get to a breathing point. Then again, changing horses in mid stream isn't always wise. But I want, need and expect my docs to be forthcoming with information.
Blessings
Just curious, where do many patients go for Tx or transplants, not that we will necessarily change hospitals or onc, just wondering were many of patients feel getting the best Tx possible for leukemia, we live in the Midwest, but that doesn't really matter, thanks
Folks on these boards have had transplants at places around the US and globally. Mine was at Fred Hutchinson in Seattle and I highly recommend it...I met patients from every corner of the globe there. But there are many other equally wonderful places that might be more conveniently located. A good place to start might be with your insurance carrier as they may have an approved list of transplant facilities.
I was at Fred Hutchinson/SCCA, too. I can't say enough good about that group. Excellence followed by excellence.
But, as Barlee said, there are a lot of places where you will get top notch care. Her suggestion to start with your insurer is a really good one.
Blessings