Pomalidomide (Pomalyst) Update For Relapse After 7 Doses – March 12 2013

Absolutely NO sleep last night – My gastrointestinal track has just STOPPED all of a sudden and I suffered all night. Took Senna-S and Phillips Tab – hope things start up again SOON.

Took half of my weekly 40 mg Dex for the day with breakfast (20 mg). Will take the second half with dinner since I take my Pomalyst at bedtime.

My GI tract started back up, but, I am still distended in my abdomen.

Update after first 7 days of pomalidomide (Pomalyst) 4 mg. Drove to Lost Rivers Medical Center in Arco, Idaho (30 miles each way) and had my blood drawn to see how my bone marrow is reacting to the new Pomalyst. They had not received my blood draw order from St. Luke’s Hospital in Twin Falls, Idaho and I had to call them to get the order which came quickly, but lacked the LDH which should have been drawn – oh well.

My labs are not much different than before I started the Pomalyst 4 mg. My white blood cell count (WBC)  is low at 2.2 (norms 4.5-11 and reflects your ability to fight infection); ANC (absolute neurtrophil count  is low at 1.36 (norms 1.9-8.8 and reflects your immune system quality and whether you can be in public with or without a mask); hemoglobin low at 9.2 (norms 12-16 and reflects your oxygen carrying capacity or energy level) and platelets low at 97 (norms 140-440 and reflects your ability to clot your blood). I hope my platelets hang in there throughout the Cycle 1 (21/28 days).

My kidney function tests via my blood continue slightly abnormal. My creatinine is slightly high at 1.10 (norms 0.52-1.04); BUN is normal at 14.4 (norms 7-17); and GFR is abnormally low at 53 (norms > 60). My liver function tests are back to normal since I stopped plain Tylenol.
Drove back to Mackay and pretty much slept all day on the sofa…had to make up for that sleepless night.  Had a little gastritis, but nothing too bad.

The St. Luke’s Hospital MSTI (Mountain States Tumor Institute) Pharmacist from Boise called today to ask me about any side effects that I’ve had from the Pomalyst. They have to report side effects to the manufacturer, Celgene, and they will be calling me each week. I explained that the only side effects that I could attribute to Pomalyst were:
  • burning scalp (improving)
  • creepy legs (had before I started Pomalyst, but seems worse at night – taking 1/4th to ½ tabs of plain Oxy which helps. Trying to balance dosage so I don’t feel hung over during the day)
  • increased neuropathy of left leg especially from knee to groin – was about a 2 (1-10 scale) prior to Pomalyst and now 4. I am attributing my left hip pain to neuropathy now since all of my tests (plain x-rays and MRI were normal).
  • tired, especially after taking
  • constipation (I forgot to tell her this, I will next week)
My neighbors this morning.


Pomalidomide (Pomalyst) Update For Relapse After 5 Doses – March 10 2013

Update on side effects of pomalidomide (Pomalyst) after five (5) 4 mg doses. I take the pomalidomide just before bedtime because it makes me almost instantly tired.

  • continued scalp burning
  • creepy legs with a fullness feeling in left calf (like it is being blown up with bicycle pump)
  • neuropathy of left leg rated 4 on 1-10 scale, especially from back of left knee to left hip
  • neuropathy of left foot is mild
  • poor sleep attributed to neuropathy
  • tiredness, especially in afternoons and evenings
  • no diarrhea and no constipation
I have been experimenting with small doses of oxy (1/4 tabs) to relieve the neuropathy and not leave me feeling hung over while awake. The scalp burning might freak me out, but since I know this was only a temporary sign after I started Revlimid (a relative of pomalidomide), I’m fine with it.

My gastritis is GREATLY improved – I’m sure it is caused by dex and not pomalidomide. I take 40 mg of dex by mouth each Tuesday. Almost instantly develop gastritis BURNING PAIN after taking dex and by Friday had very little to no gastritis this week.

Continue nightly Fragmin 15,000 unit injections to thin my blood and prevent blood clots from pomalidomide.

Have been walking Kemmer daily – 0.82 miles on 7 Mar 2013; 1.28 mile on 8 Mar 2013; and 1.28 miles on 9 Mar 2013. My back hurts across my scapula when I walk, but that was happening even before I was officially diagnosed with myeloma.  It is still winter here in Idaho and COLD. My hair is still growing and I think I even need a haircut to even it out.

Able to do laundry, house cleaning, etc. without problems. In addition, I feel like I am clear of thinking of late.

Gut Improving and Lab Values – December 7 2012

My gut started moving this morning and I feel some better – but, there is room for more improvement.

Drove to Lost River’s Medical Center and had my blood drawn to check my platelets for my Fragmin dosage.

My white blood cell count was low at 2.4 (norms 4-11.2); my ANC (absolute neutrophil count) was low at 1.45 (norms 2-8); my hemoglobin low at 10.6 (norms 12-16); and my platelets low at 62 (norms 150-440).


 Walked Kemmer to the Mackay City Limit Sign on Smelter Avenue – 0.82 miles – NO RISK at all of me exceeding the speed limit!



The Taboo Of Pain

I know it is not a thing to be discussed in polite society, but, if you have ever experienced constipation whilst having a fractured rib, you would want and need to tell somebody about it.

It hurts. Plain and simple.

Afterwards, I recommend the douche.

The Helping Hand

I have denied myself a helping hand, or shall we say, jellied bullet, since, well, forever. It was not permitted in the hospital and it has not been permitted until now… However, after four days of chemotherapy and intense discomfort, I have given in. I am weak. Sometimes, one just needs a little medicine and my, was this dose eye opening.

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I am not sure what I am happier about, the return to normal service or the fact that I was nimble enough to, erm, do the deed.

Compazine and ME – March 23 2012

I was really nauseated with burning guts in the night and decided at 1 AM, March 23 2012 to take a compazine tablet. The pill helped my stomach A LOT, but made me DIZZY and unstable on my feet. I had to sit down in the shower or faint, as I got ready to leave for my late morning appointment at UCH.

VDT-PACE Day 2 Begins at 8:20 PM March 17 2012

RN Breanne hangs my 2nd 24 hour bags of VDT-PACE chemotherapy that run in to my PICC Bard Power line in my left arm which has bruised around the insertion site and continues TENDER.
I’m retaining fluid and my face is puffy. I also have NOTHING going south in my gastrointestinal tract and despite Miralax in juice today, no results. They won’t let me take my usual Phillips Tablets (500 mg

UCH Breakfast and Visitors – March 17 2012

You have to call Room Service and order what you’d like to have for your meals. Then, the meals show up about 45 minutes to 1 hour later. Here is my breakfast. I was only able to eat the eggs with ham, because the potatoes and the veggie sausage were too heavily seasoned with PEPPER for my tummy.
Soon after eating, it seem all the peristalsis in my gut STOPPED and things wanted to come north. I was given Compazine IV and it helped a lot. However, it made me very sleepy.
Faye Hummel and Juli Richter came to visit at mid-day. They are both a lot of fun.
Jani came later and stayed until nighttime.

Day 90 – Maintenance Chemotherapy Administration Month 1 Week 2 – December 12 2011

Jani took me to UCH for my second week of Month 1 Maintenance Chemotherapy of intravenous Velcade (1.7 mg) and intravenous Dex (20 mg). In the hour prior to the administration, I took 40 mg of Prilosec and 150 mg of Zantac by mouth in an attempt to reduce the ACID esophagus and stomach I had following last week’s dose.
The headphones for the television on their smallest setting are still way too large for my tiny head with a skiff of new hair. Now, about this mask….either I’m the only patient in this huge infusion center that has had a stem cell transplant, or I’m the only patient who is following the MASK ALWAYS ON when visiting UCH for ANY REASON rule! I never see anyone else with a mask on anywhere in the whole hospital!
My blood values were all good. I’m not anemic with hemoglobin at 12.9 (norm 12.1 to 16.3);