[Bubbles1978]

Myeloma count confusion

by Bubbles1978 on Wed Apr 27, 2011 8:21 am

Hi all

Just after some advice really, my MIL got diagnosed with multiple myeloma last summer after falling in the high street and damaging her hip. It turns out that the damage was due to the bone wastage caused by multiple myeloma. Anyway, finally home after a 3 week stint in hospital, and on a 6 month course of chemo tablets and thalidamide and calcium, told in december gone into remission with a count of 3 which was good news.
Appointment 10 weeks later to check progress, count gone up to 6 in this time, advised a session of radiotherapy as pain was returning in the hip area again. After the doctors forgot about her and it was chased up she finally had her radiotherapy just last week. Today she has been back to the specialist and again the count has double to 12! I don't understand much about counts so if anyone can help please advise! Last time at 6 the consultant said it could be levelling out, but I'm worried about her state of mind with the doubling up each time, as I don't want her thinking its a losing battle! Could the radiothrapy she had last week help this? FYI her initial count on admittance to hospital was 86.

[NStewart]

Re: Myeloma count confusion

by NStewart on Wed Apr 27, 2011 9:00 am

Bubbles-
Can you supply a little more information? What count are you reporting and in what units of measurement was it reported. There are so many numbers that are watched for multiple myeloma that one number without explanation doesn't really tell us anything. What treatment has she had so far other than the radiation? What tablets was she taking?

This information would help us to respond to you and give you some questions that you should be asking the oncologist.

Nancy in Phila

[bubbles1978]

Re: Myeloma count confusion

by bubbles1978 on Wed Apr 27, 2011 11:24 am

Hi there, sorry I just received the info via text, I'm assuming it was the Paraprotein levels, she had 6 months of chemo in tablet form, the only one I know of for def that she had was thalidimide (sp?) and has been having a drip monthly to strenthen the bones? I'm not sure what else there is! Thanks if that does help!

[NStewart]

Re: Myeloma count confusion

by NStewart on Sat Apr 30, 2011 1:07 pm

It sounds like she needs to be tried on a different protocol for treatment since her number is rising. Is the oncologist she seeing an multiple myeloma specialist? If not, I would suggest getting a consult with a specialist even if s/he isn't near where she lives. Often the specialists will work with the local oncologist to coordinate treatment.

When she goes to the oncologist ask to get copies of all of her blood test results. This will provide a lot of information. Then go to the IMF website, http://www.myeloma.org, and look for/ask for what tests you should be following that are markers for myeloma. I watch my paraprotein, free lite, immunoglobulin, hemoglobin, calcium and creatinine levels. Ask lots of questions.

nancy