Who knew maintenance therapy could be so hard? My white blood count has a history of being suppressed by Revlimid. No surprise there. And my counts have always bounced-back following a week of rest. But since my stem cell transplant 15 months ago, that reliable resiliency has vanished.
The absolute neutrophil count (ANC) is a one of several “must watch” numbers for multiple myeloma patients. It measures the number of mature white blood cells that are available to fight-off infection. I have a history of Revlimid suppressing my white counts. In the past, reducing the dose over time seemed to be enough. Not anymore!
At the end of my last 21 day Revlimid cycle (no dex), my ANC count was a low 1.0 and dropping fast. Since I was scheduled to travel to Boston–and later to Grand Rapids, Michigan–my medical oncologist suggested I take a syringe filled with neupogen on my trip to self inject my first travel day.
Neupogen is commonly used to help our bodies produce more white blood cells. Typically, my ANC count should jump from, say 1.0 to 3.0 following a single injection. The bump doesn’t last very long, but it does hold for two or three days.
I am currently taking 5 mg of Revlimid, 21 days on and 7 days off. Since I was traveling so much last week, I fudged and took 8 days off. The result?
No change. My ANC count was 1.0 yesterday.
Really? No Revlimid for 8 days and a neupogen shot, and my ANC didn’t improve at all?
This presents a problem, besides my not feeling well. 5 mg Rev is the lowest dose one can take. Yes, I could switch to a two week rest cycle. But at some point, why bother at all?
And the ironic thing is–IT’S WORKING! Yesterday I learned that my M-spike was still ZERO! Honestly, I don’t usually pay much attention to that once I’m stable. But I don’t know. Yesterday I was really excited to see that zero number on paper.
So what’s going on? Why is my bone marrow so inelastic now?
It’s the Revlimid, right? Partially, of course. But both of my docs–Dr. Malhotra, my medical oncologist, and Dr. Alsina, my myeloma specialist–are concerned that my lagging white counts might be pointing to something more serious.
They are so concerned that both feel I should undergo a bone marrow biopsy (BMB) soon. Dr. Alsina mentioned that when I saw her briefly two weeks ago. And Dr. Malhotra came to the same, independent conclusion a few days later.
While speaking with Dr. Malhotra’s physician’s assistant (PA) Ann last week, she let slip what I know both docs suspect: MDS.
I’ll explain tomorrow.
Until then, feel good and keep smiling! Pat
October 19th, 2012 at 11:32 am
Pat,
Great to hear that the MSpike is at ZERO – my favorite number when it comes to MSpikes!
If you start this video at about 6:15, Dr. Barlogie mentions that MDS appears to be becoming a major issue to the myeloma patient community. He says he sees 6-10 patients weekly that are showing signs of MDS. I have mentioned this before, but the Doctors do not even know what all Revlimid is doing to a myeloma patient. Note that Dr. Barlogie says he is “shocked” that patients using Revlimid are showing a higher liklihood of getting MDS. He thought Revlimid would decrease a patients chance of getting MDS. It would really be great if the Doctors understood what our current therapies are doing to patients and how to best use them than continually be looking for the next “miracle molecule”.
http://www.youtube.com/watch?v=EZyLcTjMAww
October 19th, 2012 at 12:17 pm
Pat,
I sincerely hope that your doctors’ fears of MDS are unfounded. You have shown amazing courage and grace throughout your ordeal with MM. The last thing you need is another hiccup along the way. I sure hope your BMB gives you good news. Keep smiling, Pat!
October 19th, 2012 at 1:27 pm
I hope this is a false alarm, and your body just needs some rest from the continual chemo. As you’ve told us repeatedly, none of these drugs were intended to be used indefinitely.
October 19th, 2012 at 2:46 pm
Very helpful. Thanks, Mark! I’m working on a couple of stories that may help us understand more about MDS and our risks of getting it…
October 19th, 2012 at 2:47 pm
Much appreciated, Bill and Holt! I must admit I am becoming a bit concerned…
October 19th, 2012 at 3:34 pm
Pat,
I’ve been mentioning this to you lately, relative to the “Revlimid-is-not-meant-to-be-taken-forever” discussion.
Even the researchers at UAMS are warning that long-term lenalidomide exposure can risk MDS.
http://myeloma.org/ArticlePage.action?tabId=22&menuId=164&articleId=3625&aTab=-4&gParentType=link&gParentId=6106&parentIndexPageId=356&parentCategoryId=644
It is from the ASH 2011 meeting:
Dr. Saad Usmani “Second Malignancies in Total Therapy 3 Trials for Newly Diagnosed Multiple Myeloma: Influence of Lenalidomide Versus Thalidomide in Maintenance Phases.”
The upshot is that MDS is a worry… You might want to share this with Dr. Alsina.
Anyway, remain happy about your M-spike zero. Let’s hope other things get straightened out and that the BMB comes back clean.
Danny
October 19th, 2012 at 7:24 pm
Thanks, Danny! I remember meeting with Dr. Durie as he proudly told me about his patient that was in the original Revlimid test cohort. Still on Revlimid, at that time over 8 years.
October 20th, 2012 at 9:02 am
Hi Pat,
I’m sorry to hear about this, although it is truly a wake up call for all of us on long-term Revlimid. However, I am confused, as I found this article that describes Revlimid as a REMEDY to MDS: http://www.health.gov.on.ca/english/providers/program/drugs/ced/pdf/revlimid_mds.pdf
I emailed Dr Anderson to get his thoughts on this discussion.
Be well.
Bob
October 20th, 2012 at 9:34 am
Pat -
First, I agree with Bill and others in fervently hoping that the MDS theory is proven to be false.
I would add a couple of things.
First, even if you have some myelodysplasic cells, that could be the Revlimid tweaking the cells rather than your body making those cells from scratch. When you have your marrow analyzed, make sure they are able to distinguish. As an example, eight months ago I had a few myelodysplasic cells which scared me, but when the actual cytogenetic analysis was done of the cells in the marrow, they were all clean. This most recent BMB two months ago was completely clean. So make sure this distinction is made.
Second, even if you have MDS it doesn’t necessarily lead to Leukemia. Barlogie has said it is a concern but people don’t yet understand the clinical significance of it. Feels like MGUS is to Myeloma.
That’s said, I will pray that you don’t have it.
Of interest to the broader community is that Dr. Anderson (among others) noted to me that MDS is really an issue for those that receive an alkalyting agent (eg Melphalan) in addition to Rev. People on Rev without traditional chemo don’t seem to be as impacted. Of course Anderson is not a transplant guy, generally, so that could have a bearing on his perspective.
Be well, Pat, and keep us posted!
October 20th, 2012 at 1:58 pm
Yes Bob. If you watch Dr. Barlogie’s interview, sounds like he is confused, too.
October 21st, 2012 at 12:13 am
Thanks for your insight, Nick! I know you had a close call with MDS recently. This is all premature. But it does happen–and then we have no choice but to deal with it. So glad everything looks good for you!
October 25th, 2012 at 5:06 pm
Hi Pat, I have been out of the loop for awhile and just read this. I am praying that this is just a blip on the radar screen. Revlimid is such a double edged sword and hopefully it is nothing. Big hug! Terry
October 25th, 2012 at 9:27 pm
Thanks much, Terry! BMB and other tests tomorrow…