[PSWhite]

Newly diagnosed, Stage 3 - many questions

by PSWhite on Tue May 19, 2015 1:57 pm

My brother was recently diagnosed with multiple myeloma. He just started the first month a four-month oral chemo treatment. Prior to the start of his oral treatment, he had a hip replacement. The doctors were going to wait on the surgery, but he was in so much pain that they conducted the re­placement. They stated that they are glad that they did, because his hip was like a sponge.

With the surgery completed, he just started the oral treatment. His kidneys and liver are fine, he is 45 year old. My questions:

1. What type of treatment have others at this stage found most successful?
2. What type of questions about treatments do you wish you would have known to ask your doctor?
3. What type of things and/or treatments were a waste of time?
4. Is there anything new in treatment that we should pose to the doctor?
5. Is working a full-time job wise at this stage or can it deplete energy that could be used to stay healthy and fight the disease?
6. How important is diet?

[Dr. James Hoffman]

Re: Newly diagnosed, Stage 3 - many questions

by Dr. James Hoffman on Tue May 19, 2015 2:50 pm

Happy you found this forum. We need more details to offer any real advice. It is not typical for a young myeloma patient to be on oral therapy alone (unless participating in a clinical trial).

Would be helpful if you could add:

1. Where he lives (country/state).
2. His exact treatment
3. The details of his myeloma- subtype (e.g., IgG lambda, IgA kappa, etc.), genetics (FISH, etc), initial bone marrow biopsy results (plasma cell percentage), etc
4. Plans for a stem cell transplant?

Myeloma is a complicated illness, and each case is different. The details are very important.

Hopefully we can help.

[ByYourSide]

Re: Newly diagnosed, Stage 3 - many questions

by ByYourSide on Thu May 21, 2015 7:14 am

This leads you to a list of treatment centers dedicated to myeloma and, in my opinion, would be the first step in getting the best treatment for your brother's situation:

"Multiple myeloma treatment centers"

I would make an appointment with a myeloma expert as soon as possible to find out what's best for him. Good luck! There's a lot of information on this site that may be helpful to answer some ques­tions and to help formulate questions to bring to your 1st appointment. And keep a notebook!