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 1/4^th 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.

Pomalidomide (Pomalyst) Update For Relapse - After 2 Doses - March 7 2013

Day 1, 5 Mar 2013 I started on 4 mg of pomalidomide (Pomalyst) the evening of 5 Mar 2013. Just like Revlimid, I thought it best of take in the evening since Revlimid made me tired and pomalidomide is in the same family with Revlimid. 

I also took 40 mg of oral Dex (each tablet is 4 mg, so I have to take 10 for 40 mg). The oral Dex almost instantly cured my creepy leg syndrome, but it wasn't long before I had good case of gastritis going AGAIN. I took Carafate Suspension and that helped some, but the best cure for my gastritis is a slice of lightly toasted bread. I attribute the gastritis to the dex and not the pomalidomide. 

So far, I think the only side effect that I've had after one capsule of pomalidomide is being tired almost immediately after taking it. I slept well from 7 PM until 11 PM. After that I didn't sleep too well, but I stayed in bed and only watched television for about 2 hours around 1 AM.

Day 2, 6 Mar 2013 I had continued gastritis. Around 4 PM, my creepy legs returned with a vengeance which I'm pretty sure is from the pomalidomide and I had a frontal headache which I thought might be from our cloudy, off-and-on snowing weather today. I ate dinner early and the headache disappeared. Had another poor night of off and on sleep. I finally took 1/4 tab of oxy (a little medicine goes a long way with me) around 2 AM for my creepy legs and slept until 6:45 AM - this is good.

Day 3, 7 Mar 2013, gastritis. Up this morning, clear of thinking and don't feel hung-over from the 1/4 tab of oxy last night. Mild gastritis. No creepy legs this morning. I do have a burning sensation over the crown of my head, but it does not itch. I had a similar, but WORSE burning and itching when I started Revlimid, but it dissipated after about a week and never returned.

Summary of "maybe" Pomalidomide Side Effects:

• tired after taking
• very creepy legs
• burning scalp sensation