Doing Great

Saw the doctor again today, and I continue to do great. Hematocrit was up to 39. Other labs good. He had not gotten the protein count yet, I'll get that number tomorrow night.

We decided to harvest stem cells. in that regard, he advised to stop the Revlimid, and the Dex too if I want. I want.

I'm travelling the next couple weeks, but when I get back I will meet with the doc and we will set it up. I'm scheduling around some eye surgery set for Nov 4.

The news continues to be good. My doctor gave me the results of my latest blood tests, which reveal the hematocrit up to 35 and monoclonal protein down to 0.2. He is still amazed at how well I am doing. Also I had a bone survey, showing no skeletal problems. Next month I will have a bone density study.

When we started treatment, the goal was to become transfusion independent. I have been so for 3 months now. A new goal is to get the protein down to 0.0. We will call that remission.

I am in the 2nd month of treatment with Revlimid and Dex. This past month I have been feeling quite well, with more energy than I have had in quite a while. Today I had my transfusions scheduled for 9:00 AM, and visit with my doctor at 11:00. The doctor met me in the waiting room and took me back to a normal exam room. He told me that he was cancelling the transfusion since my hematocrit was at 32. This was a drop of only 2 points over the month from the presumed 34 after my last transfusion. Further, my M protein dropped from 4.4 to 0.4. These are not great results, but phenomenal to use his word. Since no transfusion, I also can stop taking Exjade as iron levels have fallen.

Wow, 2 months in and dramatic results. I am very encouraged.

Yesterday was the first blood test/transfusion since I started my Rev/Dex treatments three weeks ago. Usually my hematocrit drops to 25, this time it dropped only to 28. My M protein had risen to 4 in the past, this time it dropped to 3.4

It is still too early to say this is anything more than an aberration, but I will take it as positive news. I'm pretty excited about this.

Day 7, end of the first week. Could be worse. I have had a little nausea, very tired, and I itch. On my dex day, I had insomnia. Today my blood pressure is very low, 85/58, causing lightheaded, dizziness.

Dex again tomorrow, not set to see the doc for almost 2 more weeks.

I have taken my first dose; 40 mg dex and 25 mg of Revlimid. Aside from not sleeping last night, so far, so good

For over two years I have had it pretty good. I have been able to largely ignore my illness. The fact that I smoldering myeloma has meant no cancer treatments, only treatment of symptoms by giving me three units of red blood cells about every six weeks.

But the times they are a changing. I am needing more blood. My hematocrit has again fallen to 25. It will be only 4 weeks until my next transfusion. This is a significant amount of blood. And the side effect of iron buildup now needs treatment. Exjade is an iron chelating agent that is expensive. Thankfully, I have good insurance that covers almost all of the $6,700 monthly cost.

But we have decided that there has been enough progression that treatment of the disease is now needed. I will be starting on Revlimid and and dexamethasone. the cost of Revlimid is apparently about the same as Exjade. So just those two will run better than $13,000 per month!

Makes me think about health care. How much is my life worth? How much is any life worth? There are many who can not afford this treatment. What should be done about that?

We are starting with this two drug combination. It's about tradeoffs. Adding a third drug would be perhaps effective more quickly, but it would be IV and tie me to coming in for treatment every two or three days. Also side effects would likely be worse. So to balance treatment with quality of life, we will start with two.

I can't help thinking this decision will define the rest of my life. Is it the right one?