Experience with Multiple Myeloma

[Anonymous]

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!

[Anonymous]

My only advice is to get on the internet and research the top hospitals and doctors who deal with MM. This is a very challenging illness and over the head of most local doctors and hospitals. It may require more time and money but will be worth it. Good luck!

[Anonymous]

I have a friend who has this -- diagnosis was based on back pain initially.

I don't know all the details but my understanding is that the outlook has improved in recent years, so you should stay away from Google and actually talk to some docs.

[Anonymous]

My Dad was diagnosed 5 years ago. He is doing great! Goes to treatment at John's Hopkins every 3 months. He also has to get regular blood tests and bone scans.

His numbers are holding steady since being diagnosed.

My advice is get a good doctor who knows MM. My dad had to go to Baltimore to find one we considered top notch. Dr. Borrello has been wonderful for him.

[Anonymous]

I'm sorry to hear this. My brother's FIL passed away from MM about 3 years after diagnosis. He had 2 stem cell transplants that ultimately didn't work.

[Anonymous]

We are in the same boat, OP. I'll be following this thread.

[Anonymous]

My dad has been battling it for 3 years.

There are actually many different cancers that are called "multiple myeloma" collectively so seeing a doctor that knows the disease and can customize treatment is important. Plus it sounds like he has other health issues, so those need to be taken into account with treatment.

[Anonymous]

Dana Farber in Boston is one of the leading medical centers in the field.

[Anonymous]

Yeah we are talking about going to Dana Farber.
Dad is 70 years old.
Thank you for the info!

[Anonymous]

My uncle was diagnosed with this years ago and he's still around and still functioning. He's taking a newer medication. I don't know what's it's called though. He does have some problems with neuropathy. He's in his 80's.

[Anonymous]

Last year 3 new drugs were approved for MM in just one month alone. But there is still no cure.

[Anonymous]

My father was diagnosed in 2003 and had a stem cell transplant- he is fine 14 years later! The treatment was very novel at the time.

[Anonymous]

My MIL unfortunately passed away from MM earlier this year. She was diagnosed about 4 years ago - she also had back/rib pain and was feeling extremely tired and weak (her primary care doctor initially said it was allergies, thankfully she went back in a week later and a NP told her to go to the hospital immediately). I think it really depends on what stage they catch it, for my MIL she was in a later stage. If they had caught it before it progressed, I think she would have had more time with us but who knows.

She did a autologous stem cell transplant, where they took her stem cells and "cleaned" them. She also went through chemo. This treatment kept her numbers down for about 2 years, and she led a pretty normal life.

Unfortunately last year her numbers spiked and the doctors (she went through treatment at John's Hopkins, and her doctor was wonderful) wanted to do a stem cell transplant with a donor. Her numbers never got low enough to the point where they could do the stem cell transplant (she was on this chemo maintenance drug type thing during this time). Our last hope was that we could get her "healthy" enough to get into a clinic trial, she just never got to that point.


I would say if they catch it in the early stages, we were told with treatment that the person can live 10, 15, 20 years with limited/no issues. My MIL was just so sick by the time the diagnosed her, I think that really limited her time. There isn't a cure but can be manageable with different treatments. Prayers for your Dad, OP.

[Anonymous]

My late-70s father was at death's door from kidney failure before he was properly diagnosed with MM almost exactly a year ago. His cancer is currently undetectable, though we know it will come back at some point. He had an autologous stem cell transplant (which is a very difficult procedure, at least in his case) and participated in a clinical trial at Georgetown.

Second PPs who said to find an expert in the field. There are so many new treatment options that you want to be with someone who is current on the research. I found this site very helpful for research and information when my dad was first diagnosed: http://www.myelomabeacon.com/

[Anonymous]

I have the smoldering form. At some stages, the treatment is no treatment, but watch and wait. There are good doctors all over. Since it's a cancer people live with for decades, I'm focusing on other things.