[Julie Shilane]

What should new myeloma patients *really* know?

by Julie Shilane on Thu Apr 29, 2010 1:25 pm

Looking back to when you were first diagnosed with multiple myeloma, what information do you wish you had been told then that you now know is really important or useful to know -- but you just weren't told?

We've been discussing this issue a lot here at The Beacon, and we felt the topic would be a good one to pursue further here on the forums.

So what are your thoughts?

Thanks!

[Ricardo]

Re: What should new myeloma patients *really* know?

by Ricardo on Fri Apr 30, 2010 11:16 am

That's a great question! It will be interesting to see what people have to say.

Matt had some comments about this in a forum posting about three weeks ago. He said:

On opposite sides of the spectrum there are two approaches to the treatment. On one end, there are cancer centers which use drugs very sparingly, the idea being that overall survival is lengthened when the cancer cells are not given the opportunity to build up a tolerance to various chemotherapy drugs. Dr. James Berenson in Los Angeles uses this approach. I would say the overall goal is maintianence.

The opposite is a very aggressive course of treatment. The best representative of this approach is Dr. Barlogie at Arkansas. They use a battery of drugs up front, followed by tandem stem cell transplants approximately six weeks apart. This is followed by two years of maintainence therapy. Arkansas bases their approach on the way in which childhood leukemia is treated.

Both Berenson and Barlogie claim overall survival at twice the national average. Perhaps this means that there is more than one effective way to approach this disease. ...

The second thing I wish I had known about was various clinical trials. As a newly diagnosed patient, you may be eligiable for some of these.

[Linda]

Re: What should new myeloma patients *really* know?

by Linda on Sat May 01, 2010 11:41 am

The first thing I needed after my multiple myeloma diagnosis was hope. One of our children was friends with a cancer nurse who knew a multiple myeloma specialist. Because of that I had a second opinion with that specialist. After our visit, my hope rose dramatically.
At that visit I learned about the novel agents Velcade and Revlimid. With these drugs, and a little luck, you can have an excellent quality of life while you are dealing with multiple myeloma.

[NStewart]

Re: What should new myeloma patients *really* know?

by NStewart on Sat May 01, 2010 9:58 pm

I guess one of the things that I would have liked at the beginning was a definition of bone pain and what might be an indication that that pain is what was developing. I was diagnosed with MGUS and was told about the possibility of increased infections, bone pain, and kidney problems and that I should call the onc if any of these developed. I already had anemia that was being watched and treated. But, since I had never had a broken bone I really had no idea what bone pain might feel like.

Well I found out when I developed a pathological fracture of my arm and shoulder. Because I also have significant arthritis in that same shoulder, I thought that my shoulder was at the point of needing surgery. It wasn't until I was unable to move my arm at all one day that I went to the ER where the fracture was diagnosed. I could have saved myself weeks of pain if I had had some idea of what bone pain might feel like.

Oh, well. Now I know and hopefully won't have that again. But, if I do I'll recognize it sooner for what it is.