First, let me start-out by thanking my readers and friends for their congratulatory phone calls, comments and emails this past week.
But I was reminded yesterday how tough it is for us with multiple myeloma to find–and then sustain–remission or a complete response.
I have a standing 3 PM Wednesday appointment at my infusion center every week. I don’t always receive treatment. Sometimes they only do some blood work. More often I’m getting a sub-q Velcade infusion or other IV meds.
But I changed that appointment to Tuesday morning this week, since I was flying up to Minneapolis to visit a pair of support groups in Stillwater today and St. Louis Park on Saturday.
I chatted with the tech as he drew my blood and checked my INR. The clinic routinely runs that test because I am taking the blood thinner, warfarin, to help keep my blood thin enough to prevent blood clots that may be caused by taking Revlimd. No problem there, it was fine.
Then the bad news. My absolute neutrophil count (ANC) was a very low 0.8. I was stunned. Since I hadn’t taken Revlimid for over two weeks, I thought that my white counts would have had plenty of time to recover.
Instead, my counts had dropped, and my overall white count was also low at 2.0.
What did all of this mean? No Velcade or Revlimid until my ANC climbed well above 1.0.
Well, that’s a bit disappointing! Less than a week after learning that I had achieved remission following last year’s relapse, I have already hit my first “speed bump.”
Instead of Velcade, I was given a sub-q injection of neupogen to try and artificially boost my counts.
If I was staying in town, I could have gone back for a re-test and hopefully my weekly Velcade injection. Because unless your bone marrow is completely fried, neupogin can work miracles in getting your white counts up.
But since I was heading out of town and would be gone through the weekend, what should we do?
My medical oncologist, Dr. Malhotra, was working in a different clinic yesterday. But my nurse got him on the phone. Dr. Malhotra felt that we should wait until the following Wednesday to try again.
If you will bare with me, I’m sharing all of these details for a reason.
For a patient who is stable has just achieved remission, one might ask “What difference does it make if you skip a week of treatment?”
Great question! And the answer is “It probably won’t make a difference.”
After all, in the “old days” three or four years ago, many oncologists would have rewarded my chemo packed, nine month quest for remission with a well deserved drug free holiday. Heck, I may not have started on any chemo again until I relapsed.
But not these days! Today, a relapsed myeloma patient almost always stays on constant maintenance therapy.
Back to my point. As you can see, missing a week or two for me probably isn’t a very big deal. But what if I wasn’t in remission–or even stable–and my myeloma was getting worse?
In that case, missing a week or more could be disastrous, especially if a patient’s bone marrow had run out of gas and wasn’t able to recover quickly. What happens if even neupogen shots couldn’t get someone’s counts up in a week or two or three?
Ask Linda or Cindy from my support group down in Florida. Oh, sorry, you can’t. They both passed-away last year.
Why? One broke her leg and was forced to delay treatment. The other simply couldn’t keep her blood counts up high enough to continue receiving chemo.
The lesson here is a simple one. Even if your myeloma is stable, in remission or CR, we must all be vigilant and work hard every day to keep our bodies and bone marrow as healthy possible!
Exercise regularly, eat well and get plenty of sleep, because the longer we undergo treatment, the more likely we are to hit one of these “speed bumps” that forces us to delay or alter our medical team’s preferred treatment plan.
I’m writing this on the plane, headed north to the land of 10,000 lakes. As far as I’m concerned, I am more than happy to take a chemo break. But I would be lying if I said that I wasn’t concerned about my bone marrow’s growing lack of elasticity and ability to quickly bounce-back.
This is the first time that my ANC count hasn’t recovered by at least a point or two after a 7-10 day break.
I’m sure I’ll be fine. But there’s never a dull moment for us, is there?
Feel good and keep smiling! Pat