Experience with Multiple Myeloma

[Anonymous]

My fil had the smoldering form and is free and clear after treatment! Good luck! It's possible to beat this!

[Anonymous]

My dad was diagnosed about a year ago and his sister the year before that. They both did radiation, then chemo, then an autologous stem cell transplant. My dad's was in December. It is a very hard procedure, but he's recovered pretty well from it.

Both my dad and aunt are doing really well right now, and we are hopeful that they will have many more years.

My cousin's dad was diagnosed maybe 8 years ago and is not doing as well but he is older, and I think his disease had progressed more before diagnosis. Plus, treatments ha s advanced quite a bit in the last few years.

[Anonymous]

Go to the Myeloma Beacon forum. Top MM specialists can answer your questions as well as patients.

[Anonymous]

Anonymous wrote:Please let me know if you had a family member who went through this. My dad was recently hospitalized for a cardiac issue, but in the month since then, debilitating back pain, leading to an MRI, leading to a diagnosis of "lesion" on the spine, is suggesting multiple myeloma. We are awaiting test results but it takes so long to get them back!

I have been googling and I see the various societies and online resources. I am wondering how your relative was diagnosed, how the situation progressed, and whether or not they survived. Also what tips and insights you might be able to share in dealing with doctors. The things you didn't know you should ask about until you went through this.

Thanks!

Thalidomide is a huge help with MM. If there is no kidney involvement, MM patients can live for 15-plus years.

My friend's husband had pretty bad kidney involvement and lived five years. But he would not stay on the Thalidomide because he didn't like the side effects.

[Anonymous]

First always get second opinions, even if it confirms what you've already been told.
Sloan Kettering in NYC has Neha Korde and Ola Landgren who specialize

[Anonymous]

Family member with it, living with it for more than 10 yrs.
Medications and chemical can be debilitating, but they are still here and have a high good quality of life!

[Anonymous]

Anonymous wrote:Family member with it, living with it for more than 10 yrs.
Medications and chemical can be debilitating, but they are still here and have a high good quality of life!

Meant "Chemo", not chemicals ( even tho Chemo is a chemical)

[Anonymous]

OP, I'm sorry you're dealing with this. My MIL has MM -- doctors started watching her blood cell count many years ago when she had a bout with another form of cancer. As I understand it, a couple years ago the MM cells started increasing and they began treating with radiation and chemo. A little more than a year ago she elected to undergo a stem cell transplant.

There should be no sugarcoating the fact that the stem cell transplant is a very rough procedure. The patient is in the hospital for at least 6 weeks and the first few weeks after are really hard. And then there's the recovery after the hospital. I would think you'd have to be otherwise pretty healthy to get through it (which my MIL is; still runs daily!). For my MIL it was all worth it, though -- she's in remission at this point and is on "maintenance" drugs.

If you're local, both Johns Hopkins and University of Maryland Medical Center are top notch in terms of treatment. Good luck with everything -