Wednesday, August 12, 2015

The Disappointment

In my last blog post, I described how we were waiting to get the results of more recent labs and to meet with the Bone Marrow Team up in SLC.  Well, we did both.  Two weeks ago today, we met with the BMT  my (very late) 100 day checkup.

Doctor Ash did not try to beat around the bush.  She started out by saying that she had some bad news.  Just the day before I had seen the latest posting online of my Provo lab results, but I was hoping there was a mistake or perhaps I was not understanding the context.  That's not what she said.

So, to give you all some context. The M-spike is a lab result that shows the level of abnormal (cancerous) protein in the blood.  Normal people's score is 0, none.  I was diagnosed when it was 1.7 (fairly low compared to some other people we've spoken to).  After my rounds of chemotherapy, it dropped (good news), and it was 0.2 just before my stem cell transplant.  The most recent results available at the time we met the BMT was 0.6.  This means that the cancer is back and growing.
All I could think was:

Patricia told me after the meeting that she wanted to slap the doctor across the face and tell her, "Stop talking!"  It was a difficult thing to hear.  The lab result that shows the presence of other proteins that can damage the kidneys were also way higher than normal. She said that the team believed that my cancer was "refractory", meaning unresponsive, to the chemotherapy that was used in the hospital.  In other words, I went through that, and it did succeed in killing my immune system, but it didn't kill the cancer.  Again, I thought:

So we've had a hard couple of weeks adapting to the news.  We met with our oncologist yesterday.  He was also a bit disheartened.  We discussed options including the possibility of a donor stem cell transplant; this is a fairly effective treatment for some other conditions (such as Non-Hodgkins Lymphoma), but he said he would not recommend it for Multiple Myeloma -- too risky with mortality rates around 20-30% and the evidence is not clear that the gains for many are worth the risk.  Some people have done well with it, but that is apparently not the norm.  We discussed participating in a clinical trial with some of the new treatments that are coming out and resuming chemotherapy at home, with new, updated drugs.  We are taking a month to do some research then we'll meet and decide what to do.  

So -- thank you for your prayers and support.  Please keep them coming.  We'll post more when we know what we are doing. There are some new treatments and opportunities.  I hope to be bothering all of you for some time yet.