Slight return...

It's back. The remission had a good run, but myeloma is a wily beast that changes its spots regularly.

There's an excellent chance of this being beaten down once again with perhaps the same protocol used in induction therapy: Velcade, Doxil and Dextamethasone. The induction therapy was stopped because it was working so well they achieved a remission, not because the therapy had stopped working.

I had written here that there was not a lot found. This was my mistake, I misunderstood what Richie had said. There is a pretty big concentration of mutant cells in the sample, (60%) although the fact that the M-Spike is only 1.0 leads the doctor to suspect he hit a pocket of mutant cell activity with the biopsy.

One fact which militates in favor of a rapid return to remission after treatment: Richie is in better physical shape now than when he first presented at City of Hope in late January 2007.

Keep thinking good thoughts, praying, or whatever for him. That always helps.

M-spike is down and staying down!

The M-spike is the specific marker for multiple myeloma. It is secreted by mutant plasma cells, and Richie's initial value was close to 9.0. Once the initial Velcade/Doxil/Dextamethasone treatments were given, the M-spike dropped first to around 3.5, then to 1.5, then down below 1.0 to where it's pretty much been since June. In December, the M-spike was down to a point where it's referred to as being a "trace band" where the actual value is so low it cannot be reliably measured. Basically the take home message is that the myeloma has been knocked down to molecular remission. It's still there...cowering in the shadows, waiting for a moment when Richie weakens and it can pounce. But it has been effectively beaten down to the point where it is at a standstill. On the 10th it will be four months since the transplant. Awesome.

Survivor day: 12/26/2007

This is the anniversary of when Richie was diagnosed with multiple myeloma. Richie is doing fine...yesterday we took a walk between our house and about 2/3 of the way to the hospital at which Richie was diagnosed, and I was more winded than he was.

Two more of our friends were diagnosed with cancer recently. One has a blood cancer that's basically a kissing cousin of what Richie has, the other has prostate cancer which I lost an uncle to a few years ago.

I know that Richie isn't out of the woods...it was explained to us that the only way to know that you have beaten multiple myeloma is to die of unrelated causes. Sort of like what happened to Peter Boyle...he died of a heart attack unrelated to his myeloma. However, we are quite hopeful for the future. Things aren't perfect: there are limitations we'd like to learn to work around right now. The maintenance meds that Richie's on need tuning, which is something to be expected considering that it's a new regimen.

It is likely we will not be updating this site in a while, but every now and again I'll post some bits about Richie's progress. Also there's the album recorded at the benefit gig...it'll come out. Eventually.

Almost 2 months since transplant: good news!

Tuesday Richie got some excellent news: he is officially in remission. This time it really, really IS official. Three clear bone marrow biopsies sort of equal remission by most criteria in judging cases of multiple myeloma. They have started him on maintenance therapy: Thalidomide/Dex/baby aspirin + Zometa IV once a month. This will continue for the foreseeable future. Since he only needs the IV once a month, they are not installing another port, be it a PICC line or a Hickman.

Richie's energy level is improving big time. He's still not 100% but he's looking at recapturing more of the energy levels he used to have rather than settling for some sort of "new normal." I have told him this is not necessarily so realistic considering I will never get back to anything above a "new normal" level of energy after my bouts with Chronic Fatigue Immune Dysfunction Syndrome. He is likely to not ever get back to the 100% mark he was at pre-mm. He might get to 80%, he might get to 90%, heck, he might even get to 95% or better but he will never be the same.

Thanks to everyone for their support.

OK, starting this up...

I know that City of Hope has pages set up for patients there, but this is easier for me.

The idea of this site is so that people can find out, at a glance, what's going on with Richie and his treatment. He's going in for a Stem Cell Transplant on September 7, and hopefully he will have as good of luck with this part of his treatment as he has with the treatments he's had before.

Here's the history of Richie's illness.

• November, 2006: Richie starts having mysterious fatigue. It wasn't a flu. It didn't lift. As someone who has survived Chronic Fatigue Immune Dysfunction Syndrome, I dreaded that maybe Richie had gotten the mysterious "factor X" that caused my disease.
  
• December 20, 2006: Richie was admitted to Mission Community Hospital with unexplained anemia far below normal.
  
• December 26, 2006: Richie gets his DX of Multiple Myeloma. Fine time to get it, even though neither of us are Christian or celebrate Christmas.
  
• December 28, 2006: Richie is discharged (basically kicked out) of Mission Community Hospital. There is no arrangement for continuity of care -- he's told to go to the ER at Olive View/UCLA County Hospital. After waiting there all afternoon we are told that he can be treated outpatient for his MM.
  
• January 2007: During the early part of the month, we are stymied by a lack of access to care, and Richie's deteriorating condition. We petition to get help at City of Hope. After Richie's left shoulder balloons to twice normal size, with attending pain, he is given an intake appointment. Dr. Stephen Forman, Chair of Hematology, becomes his coordinating oncologist/hematologist. Richie's "numbers" are not great: lots of calcium in the blood, not a lot of hemoglobin in the blood, and lots of MM markers in the bloodstream.
  
• Late January-May 2007: Richie is first brought in for inpatient treatment at Helford Clinical Research Hospital at City of Hope, then outpatient treatment through Brawerman Outpatient Clinic, also at City of Hope. Dr. Forman, in consultation with Dr. Krishnan, chooses Velcade with Doxil and Dexamethasone as first-line treatment. It was a gutsy (and off-label) treatment regimen, and it was extremely effective in his case. All MM markers took off downhill at a remarkable rate of speed. There were side effects, some really nasty, others just annoying. However, quality of life was never diminished enough to discontinue the regimen. Dr. Brian Durie, the medical director of IMF, gives an informal consultation backstage at the FOR Benefit, and basically agrees with everything that has been done so far.
  
• June 2007: Bone Marrow Biopsy done at the beginning of the month, no mutant cells found in the marrow. MM markers down almost, but not quite, to zero. Now that the disease is held at bay, an unrelated but troublesome medical issue could be addressed. And plans began to be drawn up for the next step in Richie's treatment: the autologous (cells taken from self and given back to self) stem cell transplant.
  
• July-August 2007: Preparations for SCT. In two sessions, three times the bare minimum and twice Dr. Forman's comfort level of stem cells are harvested from Richie's bloodstream. As of 8/31/2007, it's full speed ahead. Check-in at Helford for the transplant is scheduled for 9/7/2007.
  

Anyway, hopefully this record will help someone else, and help those who care about Richie keep up with what's going on.