We met with Dr Sborov again Friday to figure out what the next step is. Chris was originally supposed to have a break from chemo until May but just prior to collection we found that his Lamda Light Chain numbers were high. In October his Lambda light chains were 323 (Normal is .57-2.63). Starting chemo they dropped fairly quickly and were down to 4.67 by December and dropped regularly each subsequent test. They were normal for the first time in February at 2.03. Just prior to collection they were 12.6, and when tested again this week they are at 18.4. So all the plans to start treatment were moved up. Dr Sborov would like to start again as soon as possible, he would have started this week if he could have.
Trying to describe the status of myeloma is tricky. There's approximately 724 trillion blood cells in the average human body, so there's a lot of places for myeloma cells to hide. There's a lot of debate about using the term "remission"" for myeloma. Most myeloma patients, even those who do transplant, are on maintenance chemo to keep the myeloma at bay. Compared to most other cancer patients when in "remission" are not currently being treated. One term is "Complete Response" which I interpret to mean that the drugs are doing their job. I've learned that when they decided to do collection Chris was in SCR (stringent complete response) meaning that according to his blood tests and bone marrow biopsies things were in normal range. The meyloma was behaving so they used the opportunity to collect. Because his numbers are climbing he has "relapsed". Since he hasn't been doing chemo it's to be expected but they had hoped it wouldn't come back quick so quick.
When Chris was originally diagnosed, because of his kidney failure their options for treatment were limited. Now that his kidney's have improved he's eligible for the "Ferrari" of treatments. While Dr Sborov meant it in terms of the quality, it's hard not to be staggered at the cost two of his medications are each both likely 6 digit figures in terms of cost per year. Years ago I remember standing in line picking up a prescription in St. George. The person in front of me was picking up one that was about $250 and trying to figure out how to pay for it. I was shocked and wondered what the costly medication could possibly be. I remember then picking up mine and being grateful that it was only about $10.
Over the years we've been shocked at the prices of medication. $600, $900, $1000, $1100, $3000...Several times it was common to hear the timid pharmacists carefully ask "You know this is expensive right?". We are very fortunate to have insurance that covers a large portion of the cost. Especially since his chemo usually has a 5 digit price each treatment. However one bit of knowledge that I can highly recommend to anyone is that if you get a prescription that's very expensive is to see if the company has an assistance program that can help bring your co-pay costs down to a reasonable amount. Not sure what would be covered by insurance and what we would have to pay, I looked into this as soon as I got home to get signed up for anything available.
Next week he'll have his first treatment of DRd
daratumumab (Darzalex®)
revlimid (lenalidomide)
dexamethasone (Decadron®)
His previous treatment was all done once a week on the same day (an infusion, a shot and pills). DRd will be different. It is a weekly infusion (Daratummab), Revlimid (daily pills) and dex (weekly pills).
Daratumamab is a monoclonal antibody. It targets the CD38 protein that is highly expressed on myeloma cells and attacks and kills them or allows the body to kill them. The way I picture it is like a military operation and we are sending in reinforcements. The body doesn't know that's what they are, so for the first couple infusions most people experience a reaction and in varying severity. When a reaction happens, they will stop the infusion, treat the reaction, and then when safe to do so start the infusion again at a slower rate. Because of this the infusion can take a long time, usually about 10 hours. After the first couple infusions, the body seems to realize that we're sending reinforcements and instead of causing a reaction they become allies and fight the myeloma. He will do these infusions weekly for a while, eventually going to bi-weekly and then eventually monthly.
Revlimid is an oral medication that will likely be taken for 21 days followed by a week off. Revlimid is an IMiD (Immunomodulatory drugs). This Immunotherapy treats the disease by inducing, enhancing, or suppressing an immune response. It can cause low blood counts, fatigue and blood clots. They will monitor his blood counts carefully and because of a family history of blood clots he will also be on a blood thinner. It's a powerful drug which required several pages of consent, and regular phone calls with the company to make sure he's taking it correctly.
Dexamethasone is a corticosteroid that is very common and included in most myeloma treatments. It is used at almost all stages and sometimes even alone when nothing else works. It can help with inflammation, help decrease nausea, and at high enough doses can even kill myeloma. It can also help make other myeloma drugs work better.
After the first couple weeks things will gradually get better and getting down to only one infusion a month instead of one a week will be amazing. The past six months we've had little time or energy to do anything else. It will take time, and these new medications will surely have it's own side effects to deal with but I'm hopeful there's a chance to to reclaim a part of ourselves and have time to make some happy memories. Treatment, in one form or another, are likely a permanent part of our life but with a few windows of opportunity opening it hopefully won't be all encompassing.
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