High-Risk-Relapsed Update - April 13 2013

Up this morning with my continued left-sided headache and neck ache, but it is more intense than it has been all week - probably because we are having snow, wind, and rain here in Mackay, Idaho now. 

I had to take 1/2 pain pill for the pain and have spent most of my time on the sofa watching the Tiger Woods controversy at the Masters Tournament - he probably wishes he could have the other half of my pain pill!

I emailed Clay Smith, MD, University of Colorado Hospital with my recent issues and he responded directly back. He is in agreement to hold the pomalidomide for now. I will be seeing Dr. Smith in Aurora, Colorado on 16 Apr 2013 to figure out what he referred to as "my complicated case". 

The Myeloma Beacon had an interesting article about pomalidomide (pomalyst) and its performance with high-risk-relapsed myeloma like I have. Here is the link if anyone is interested:

http://www.myelomabeacon.com/news/2013/04/10/pomalyst-low-dose-dexamethasone-high-risk-relapsed-myeloma-imw-2013/

I'm coming off the 40 mg of weekly dex today. I took 10 mg daily for 4 days. I hope today, Sunday and Monday go okay before I start again with 10 mg on Tuesday. I'm really fat from steroids (dex) and maybe a little more emotionally liable - but, not bad. However, my appetite is out-of-control - tying to eat just protein.

I'm still a tad short of breath with walking around the house today. I had cramps in my feet and left calf during the night. My resting pulse is about 82 and if I stand up, it instantly goes to 94, but my oxygen level is great at 96.

The floater deal in my right eye continues to float in to my visual field and sometimes shakes.

My 13-year old Christmas cactus is blooming this morning - well, at least one bloom is blooming. Thanks Jim and Irene!

Cycle 2 Pomalidomide For Relapse Update - April 8 2013

Kemmer had her 5th Birthday on April 6 2013. She is the BEST dog!

I've had a couple of better days. Was able to walk Kemmer a bit even though my heart rate soars because my hemoglobin is 8 point something.

Winter has returned to the Big Lost River valley - which is normal - our week of spring-like weather last week was UNUSUAL.

I think I've figured out how Pomalidomide (Pomalyst) is effecting me. I take it at night on an empty stomach as recommended now (no food 2 hours prior or 2 hours after). I have to admit that I wasn't careful about that prior to Cycle 2. 

Taking Pomalyst in this way has really reduced the amount of GI upset I experience.  Pomalyst caused my upper GI tract to distend and did not allow for normal emptying of my stomach resulting in belching, reflux, and abdominal pain radiating to my back. It also stopped the peristalsis in my lower GI tract resulting in constipation. I have been able to control the constipation with Senna-S and Phillips Tablets each night.  I have tried to avoid ANY pain pills as they would only contribute to my decreased gut motility. I am careful to drink LOTS of water each day - 2,000 to 3,000 ml.

I'm pretty sure Pomalyst causes my daily left-sided neck and head pain too.

Today, April 8th is my best day all week because I'm on the recovery time from Dex 40 mg. I'm supposed to take Dex 40 mg each Tuesday (tomorrow). I've decided that I'm going to spread out the 40 mg dose over 4 days this week to see how that works for me. 

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.