[Pat]

Nothing works so far!

by Pat on Fri Oct 19, 2012 6:46 am

Hello everybody!

I once startet a thread in march 2012 about my mother.

My mother (70) was diagnosed with multiple myeloma back in march 2012 (stage IIIA).
Our lifes changed dramatically since then, because cancer was no issue within our family til then.

Therapy with Velcade, dex and cyclophosphamide started in Mai 2012.

Now after 6 cycles of 4 chemos nothing has changed.

Her results are still bad. The bone marrow is infected with 80%-90% of cancerous cells.
Her M-Gradient (paraprotein) doesn´t move and the overall lab results don´t really change for the better except the free light chains.

My mother took the chemos really well and she still lives like nothing ever happened. Sometimes I forget how very ill she ist.

We are very desperate. The doctors will continue the chemo with a new drug in 4 weeks, but I don´t know what the substance will be yet.

Any constructive words on this matter?

Thanks!

Pat (son)

[Mary Degenkolb]

Re: Nothing works so far!

by Mary Degenkolb on Fri Oct 19, 2012 8:02 pm

When I got diagnosed I did not realize that my Dr. Had a plan that worked! He had dealt with this before and what they did was a biopsy to test for the type of multiple myeloma they were fighting. Then since I had a damaged marrow with multiple myeloma in my vertebrae, we did 10 radiation treatments. Then I went on Revlimid at 25mg for 3 sessions. The third one ha the steroid as the 2nd part. This put me in remission.

Then they did another biopsy to confirm the remission. Then I was sent to Augusta, Georgia to the Georgia College of Medicine and planed out the stem cell transplant. I did the one with my own cells that they harvested from my blood. I had to take shots and drugs to get my stem cells to multiply. But when the cells were numerous enough, they harvested them, admitted me to the meyloma ward, and gave me two rounds of melphalan chemo and on the 3rd day, I got my cells back. A few weeks in isolation and now 1 year out of transplant I'm still in remission!

[Pat]

Re: Nothing works so far!

by Pat on Sat Apr 20, 2013 6:44 pm

Our unsucessfull story continues as wether the VCD regime nor the Thalidomide regime worked in any significant way. It´s a pity and not an easy task to keep up good spirits.

As far as I know our next treatment will include pomalidomide.

I hope this will work for some time...

I would have never guessed that my mother is "gifted" with such an high risk and hard to treat myeloma.

Damn it!

[Denise H]

Re: Nothing works so far!

by Denise H on Sat Apr 20, 2013 8:33 pm

Hi, Pat.. My husband has had numerous therapies during his six years with aggressive and resistant multiple myeloma.

The most recent line of therapy for him was Revlimid/Velcade/dexamethasone. It was very effective and has put him in a remission. Of course, as we know, multiple myeloma will return, but we are hoping for at least several disease-free months. His main problem now is frequent upper respiratory infections.

Has your mom's doctor considered the rev/vel/dex combination?

We are optimistic about the availability now of carfilzomib and pomalidomide and the various combinations using them.

Don't lose hope. New developments in fighting this disease seem to be coming along at a promising rate.

[silverberg]

Re: Nothing works so far!

by silverberg on Sat Apr 27, 2013 10:50 am

Think of combinations.

Alkylating agent (cyclophosphamide, bendamustine, melphalan)

Immunomudulatory drugs (thalidomide, Revlimid, pomalidomide)

Protease inhibitors (Velcade, kyprolis, mln9708)

Monoclonal antibodies (elotuzumab)

Steroids (dexamethasone, prednisone)

And so perhaps talk with your doctor about what the next combination could be.

And then get a second opinion.

We are resistant now to CYBORD, primary resistance to revlimid-ex, but highly responsive to melphalan-thalidomide-velcade-dex.

Is a auto stem cell transplant a possibility for your mom? If yes, then avoid melphalan in the induction.

Good luck!