Friday, May 16, 2014

New Hope . . .Bodaecia Rising

Since my last post in January, things have gone from bad to worse and it has been an extremely difficult time.  Many times, I tried to begin a post but I was overwhelmed by how I was feeling and the frightening fact that the drugs were failing me and my lambda light chain was going up at a precipitous rate. My warrior spirit had left me and I was beginning to feel defeated.

In my last post, I was on 200 mg of thalidomide along with dexamethasone.  I felt postively toxic and never felt well and at times, I felt like a toxic dump. To make matters worse, my lambda light chain kept going straight up along with the beta 2  microglobulin number. The thalidomide was having no effect on the myeloma and after one 28 day cycle and part of the next cycle, my doctor stopped that regimen.  My creatinine was creeping up and being watched carefully.  

My next plan included a 21 day cycle of 20 mgs of revlimid daily  along with dexamethsone.  I continued to feel toxic and the creatinine was still misbehaving.  I was ready for the week off after the 21 days, thinking I would start feeling better.  That was not to be.  Each day I felt worse and by the fourth day, I knew I needed to get into the doctor and soon.  I went the next morning and by afternoon I was in the hospital with acute renal failure.  They flooded me with fluids and transfused me and on the fourth day I was able to go home.  My doctor reduced the revlimid to a much lower dose: 10 mg every other day.  On April 22, I was hospitalized again because my calcium had become dangerously high and I was still in acute renal failure.  Again, I was flooded with fluids and transfused.  This was followed by:

- A kidney ultrasound which showed that my kidneys did not look damaged.

- A kidney biopsy that revealed that the myeloma was sending proteins to gather in the kidneys and that was causing the failure.

-A bone marrow biopsy which revealed that the myeloma burden in the bone has risen to about 70%.  This has caused my wbc and rbc to have taken quite a prolonged dive. My white count has hovered from .7 to about 1.6 for about three months.  However, yesterday, the wbc was 2.9!

- Next, my feelings of toxicity were validated because the toxins were unable to be processed out of my body and the residue was still in there swirling around. It was determined that kidney dialysis was in order, so I had surgery to place a hemodialysis catheter.

-Another phase of treatment was to begin plasma phoresis.  This process uses a centrifuge like is used to separate out platelets, stem cells. etc.  The goal of plasma phoresis is to remove the proteins from the kidneys that are impairing the kidney functions.

- While I was still in the hospital, I began dialysis and plasma phoresis.

- I was released after nine days, but have been going back to the hospital to continue dialysis and phoresis.

Last week my outpatient schedule looked like this:

Monday, 8:00 AM -  Four hours of dialysis 
Tuesday1:00 PM -  Two to three hours of plasma phoresis
Wednesday, 8:00 AM -  Four hours of dialysis and two units of blood
Thursday, 1:00 PM -  Two to three hours of plasma phoresis. (This  turned out to be a seven hour day....a long story.)
Friday, 8:00 AM -  Four hours of dialysis

I had seven plasma phoresis treatments and am finished with those.  But the dialysis continues on Monday, Wednesday and Friday.

In the meantime, my oncologist started dexamethasone again at 40mg each day for four days and then four days off and repeating that.

I have been feeling much better lately even if I am  being "propped up" by dexamethasone, dialysis, and transfusions. I even baked bread yesterday!   However, there have been some dark days especially when I was still  in the hospital. I felt like I was nearing the end and starting to think about things like not making it to my 45th anniversary in June, attending my  50th High School Reunion in the fall or finding out how the last season of Mad Men ends.  Of course, there were many other much more important worries and laments that were troubling my emotional state. It was the worst of times.

My oncologist was adament that I go back to Seattle Cancer Care Alliance (SCCA) which includes world renowned Fred Hutchinson Cancers Research Center. In 2010 I had my autologous stem cell transplant there.   I was able to get an appointment with Dr. Bill Bensinger who is their myeloma expert and guru.  He has been prominently featured a in number of Patient Power videos with Andrew Schorr.  That appointment was today and I feel like I have a new lease on life.

It was an encouraging and uplifting consultation as we reviewed my case and discussed possiblities.  His recommendation is a combination therapy with two new drugs, carfilzomib and pomalidomide along with dexamethasone.  He indicated that it has been an effective combination in a high number of cases and he was confident that it could help me. This may also allow my kidneys to improve their function if the myeloma is being beaten back.  No guarantees on this but I am hopeful.   He said this combination has the ability to get patients back into remission and if not remission, close enough that an autologous stem cell transplant  could be the next step. I still have 5 million stem cells in cold storage at SCCA and we can follow up the combination regimen with a transplant if necessary.

It was the best of times today.  We left Dr. Bensinger feeling there was hope again and that has been sorely lacking over the last few  months.  Today, I began  to feel my inner warrior emerging again.....she has been absent for months.  I think I'll call her Bodaecia after the Queen of the Iceni who led a revolt against the Romans in ancient England.  She was a fierce warrior and that is exactly what I need to be as I enter this next phase of fighting this insidious disease.