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Medical Update: Pat’s latest neutropenic crash!

Posted on February 24 2012 by Pat Killingsworth | 1,486 views

While my latest medical update may not live up to the sensationalized headline, I am facing some serious issues with low blood counts and questions about whether I can continue on my RVD consolidation therapy as planned.

There is no question that staying on full dose RVD (Revlimid, Velcade, dex) six week cycles may not be possible for me as I try to squeeze the most out of the therapy.

When I was hospitalized two weeks ago with a neutropenic fever, my neutrophil count was 0.9 and my fever was between 102 and 103.

Let me pause here and explain about why our neutrophil counts are so important–and why this is especially true for a recent stem cell transplant (SCT) patient.

According to my medical oncologist, Dr. Malhotra, the ANC count (absolute neutrophil count) measures an average of how many mature white blood cells there are circulating in your blood.

So while your total white count is important (mine was a low but not alarming 1.9), it’s the ANC count which tells our doctors how well our immune system is going to be able to fight-off infection.

Everyday Health defines and categorizes neutrophils this way:

A neutrophil is the most common type of white blood cell, the cells that protect the body against infection by destroying bacteria.

Immature neutrophils are called band cells, while mature neutrophils are called polys. If a person has a low neutrophil count (as tested in a complete blood count), he or she has an increased risk of infection.

But I would not have been hospitalized if I had a normal temperature and an ANC of 0.9.  But combine that with the fever only seven months following my SCT–plus I was a bit dehydrated–and into the hospital I was forced to go, kicking and screaming a bit.

Still, it was the right call.  Following protocol for a post transplant patient only seven months out.  Three different types of IV antibiotics and two days later, feeling OK, except for that “funky” feeling I get after your system has been flooded with antibiotics.  Any of you get that buzzing, bloated feeling after taking a heavy course of antibiotics?

Three days of neupogen shots brought my ANC up to over 4.0.  So I started taking my 25 mg of Revlimid again, missing only two days.

HEY!  I’m serious about all of this.  Chemotherapy isn’t supposed to be fun, and I am determined to hit my myeloma as hard and as often as I can while we have it on the run!

Moving on, last week I did not feel well on Tuesday and Wednesday.  Why?  No surprise–my ANC was back down to 0.9.  Is it possible only three days of Revlimid could do that?  Apparently so.  Obviously, my system isn’t very elastic right now, and the neupogen props my ANC number up but can’t hold it there–at least when I’m taking a full dose of Revlimid.

But no fever, so no hospital.  I was given neupogen shots on Thursday and Friday which brought my ANC all the way back-up to 3.6.

Back up to a 3.6 ANC, I re-started taking Revlimid again.  My plan was to take it every other day until I could get me counts checked again Wednesday.

So Friday I warmed-up by taking a left over 10 mg.  Felt fine.  Saturday I took a 25 mg.  Felt a bit week Sunday.  Really?  After one 10 mg and one 25 mg?

Disappointed, I decided to follow doctors orders and lay-off the Revlimid until I had a better feel for what was going on Wednesday.

Wednesday results were mixed.  My ANC was a paltry 2.3.  Not bad–if it would hold there.

I received my Velcade sub-q injection.  It hit me a bit harder and sooner than usual, so I took it easy Wednesday night.  Before bedtime, I took my 10, 4 mg little green dex tablets, one Ativan and went to bed at my usual time.

I slept very well and felt good that morning.  I still skipped the Revlimid–mostly because I only have 25 mg capsules left–a lot of them.

So I can say with little reservation that the reason I feel poorly the morning following Velcade, dex and Revlimid is the Revlimid.

Today I will go back and get another neupogen shot.  This will be standard procedure here on out.  Tonight I will take my 25 mg capsule–but I may decide to skip a day in between for a while.

My myeloma specialist, Dr. Alsina, has conceded (she was lobbying hard for me to stay on 25 mg dosing for as long as possible) that it is probably best for me to drop back down to 15 mg dosing.  Hard to argue with that!

But since my insurance company won’t authorize overlapping doses, I can’t get the 15 mg until mid-March.  So every other day using 25 mg capsules it is.

Like I said, I’m determined to keep hitting this thing with everything we’ve got, even if it makes it a bit harder to get through each day.

My body–my choice!  Isn’t that how the slogan goes?

No worries!  I don’t even get my M-spike tested again until the end of April.   If I’m diligent–and don’t have any more major blood count set-backs which halt my therapy–I’m hoping we can push my current 0.1 down-and-out and gone!

Wish me luck!  Feel good and keep smiling!  Pat

 

4 Comments For This Post

  1. Jane King Says:

    Hi Pat,

    You are a determined cancer fighter! What can I do?? Will the pharmaceutical company help with the 15mg doses?

    I think of you and Pattie so often! I have been “filling in” at work and have been averaging 6 day weeks including very busy weekends…whew.. Sky still home month 6.

    We lost Dad K. 2/11/12… we are all so sad.

    Sending angels to surround you and hugs with my thoughts,
    hugs to you both, Jane

  2. Pat Killingsworth Says:

    So sorry to hear about your father! Yes, insurance company will cover cost of 15 mg doses–just not in the same month I received 25 mg capsules. So next month. Hearing from you made my day!

  3. Susan Says:

    Hi Pat,

    My ANC is driving me crazy, too! I am 6 months post-sct. I came down with a fever in December and when the fever left, so did my ANC. I was on antibiotics for almost 40 days! I was on 10mg Revlimid for 21 days. I managed 2 cycles on that, with an ever decreasing ANC. I started cycle 3 of 10mg for 14 days and my ANC was .95 at the start of the cycle. Now I’m at .7. It totally stinks because I do feel well! I’ve mostly been hibernating at home, trying to avoid all germs, but I do go out walking many days for 3 miles or so.

    In your opinion, is exercising a good thing to do with such a low ANC? I’m still learning. I am just 11 months from my original MM diagnosis.

    Best of luck to you! May we find ourselves with stronger immune systems soon!

    Susan

  4. Pat Killingsworth Says:

    Susan-
    Sounds like we have a lot in common! Listen, I had low ANC counts after I was first diagnosed during induction, too. Kept working and never worried about being around people. And YES! Keep exercising! Actually helps keep your counts up. Good luck!

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