jm's Adventure with Multiple Myeloma: Cycle 2 Pomalidomide For Relapse Update - April 5 2013

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Friday, April 5, 2013

Cycle 2 Pomalidomide For Relapse Update - April 5 2013

On 2 Apr 2013 started Cycle 2 Pomalidomide at 3 mg nightly and 40 mg Dex weekly (on Tuesday's). I consulted Dr. Smith at UCH regarding dropping the pomalidomide dosage from 4 mg to 3 mg since my platelets are so low and liable. He was in agreement.

Had a TERRIBLE day yesterday, 4 Apr 2013 with a left-sided neck ache and NO ENERGY. I don't know if this was sort of migraine-event or just coming down off of 40 mg of Dex. I haven't had migraine in greater than 5 years. I didn't sleep more than a couple of hours in the last 24 hours. I felt so badly, that I did not take the 3 mg of pomalidomide at bedtime.

This morning, 5 Apr 2013, I feel better. Still shaky from the dex, but the left-sided neck ache is gone. I have very little energy and increased heart rate with activity.

The nurse from St. Luke's Hospital, Twin Falls, Idaho called and said they were faxing a CBC lab test order to Lost Rivers Medical Center. So, I went to Arco, Idaho and had my blood tested this morning, 5 Apr 2013.

My white blood cell count is slightly lower at 2.0 (norms 4.5-11); absolute neutrophil count (ANC) lower at 1.09 (norms 1.9-8.8); hemoglobin lower at 8.5 (norms 12-16); and platelets slightly up, but still critically low at 45 (norms 140-440).

I will go back to Arco on 10 Apr 2013 to have another CBC.


  1. Hope you get some rest and energy

  2. Praying for you from Portland, OR to start gaining energy and feeling better!

  3. Thanks everyone for thinking about me. I'm doing better this weekend. I just have to figure out how to take the 40 mg of dex each wee, so I don't have such highs and lows. jm

  4. Hang in there! Prayers from NJ. Terry L.

  5. I've been following your blog with great interest. I started pomalyst 1 or 2 days after you and ended up in the hospital for 4 days after taking it for 1 week. I had an UTI
    and very low counts.
    I am now waiting for the counts to recover before starting again on a lower dose.

    the best to you

  6. Hi Anonymous on Pomalyst. Good to hear from you. Sorry you ended up in the hospital. Pomalyst has caused my upper GI tract to distend and not empty at an appropriate rate - resulting in belching and reflux. I have to take anti-constipation pills nightly to get my lower GI tract moving. So, for me, Pomalyst severely limits my normal GI mobility and the distention ends up making my entire abdomen and back hurt BADLY. I try to avoid pain pills as that would only slow my GI tract further.

    I am careful to drink LOTS of water each day - at least 2,000 to 3,000 ml.

    I'm not walking as much as I should because my hemoglobin is 8.5 and I get out breath easily.

    My MAIN ISSUE with taking the Pomalyst is with the 40 mg of DEX that I have to take with it - I just cannot tolerate that big dose at one time. This coming Tuesday, I am going to take 10 mg for four days and see if that helps - have NOT discussed this with anyone - but, I have to figure out something.

    Thanks again for your comment. jm