[Matt]

Re: needing some inspiration

by Matt on Tue Apr 06, 2010 3:20 pm

Jay,

Here are a couple of things I wish I knew when I was first diagnosed. I don't know if it would have necessarily changed the choices I made, but I do wish I'd known before I started treatment.

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.

Ask your doctors at Hopkins and Farber specifically what their opinions are of the Arkansas protocal versus Berenson and discern where they fall on the spectrum. They should be able to provide you the clinical trials and other research that informs their approach. You can make an informed decision regarding your treatment.

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.

Regarding whether or not you will be able to return to work after induction and/or stem cell transplants, I say that every patient responds differently. There are many different factors that contribute to this, such as the amount of bone or organ damage done by the disease. One thing you can control is the amount of exercise you do during treatment. Exercise will help you bounce back faster.

[Jay2010]

Re: needing some inspiration

by Jay2010 on Wed Apr 07, 2010 11:52 am

Thanks Matt and all,

That's exactly I wanted to ask the doctors when I meet because maintenance v/s TT3 are at opposite end of spectrum.

Matt : How do you find about clinical trial, I checked with the govt site and there no trial that I can qualify for. Are there any other places where I should look..?

Jay

[Matt]

Re: needing some inspiration

by Matt on Tue Apr 13, 2010 7:36 pm

Thanks Matt and all,

That's exactly I wanted to ask the doctors when I meet because maintenance v/s TT3 are at opposite end of spectrum.

Matt : How do you find about clinical trial, I checked with the govt site and there no trial that I can qualify for. Are there any other places where I should look..?

Jay

Jay,

I have non-secretory multiple myeloma which makes me ineligiable for a lot of clinical trials. Ask your doctors about clinical trials. I am reserving that option in the event of relapse. I even spoke with a doctor in Boston about the possibility of a clinical trial where they do stem cell transplants using unbilical cord blood. (Neither of my brothers were a genetic match. If they were I would have had an allogeneic transplant. Approximately 1/3 of the people who have an allo transplant never have a recurrance of multiple myeloma.)