- 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.
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.
So far so good!
ReplyDeleteJM
ReplyDeleteI read your Blog and noted that you are resistant to Kyprolis. The following was published in the news section of the Beacon that may be of interest.
"Viracept May Overcome Velcade And Kyprolis Resistance In Multiple Myeloma – Findings from a recent preclinical study show that Viracept (nelfinavir) kills multiple myeloma cells, including those that are resistant to Velcade (bortezomib) and Kyprolis (carfilzomib). In addition, the researchers found that Viracept enhanced the effectiveness of Velcade and Kyprolis, particularly when administered to myeloma cells resistant to Velcade and Kyprolis. Viracept belongs to a class of drugs called protease inhibitors and was approved by the FDA to treat HIV in 1997. Viracept as well as Velcade and Kyprolis limit a cell’s ability to chop up and discard unwanted proteins. The accumulation of these unwanted proteins causes the cells to die. The researchers also investigated the anti-myeloma properties of eight other HIV protease inhibitors but found Viracept to be the most effective. The investigators therefore state that Viracept may be useful to overcome Velcade resistance and believe their results justify clinical study of Viracept in combination with Velcade or Kyprolis. For more information, please refer to the study in Blood Cancer Journal (full text)."
Ron Harvot
Thank you for sharing this Ron. I will discuss with my oncologists after I find out if pomalidomide is helping me or not. Next bone marrow biopsy scheduled for around 20 Apr 2013. Subcutaneous velcade gave me terrible neuropathy that improved once I switched to carfilzomib - but neither worked for me. jm
ReplyDeleteHi Judy, I came upon your blog serendipitously while researching some info for a presentation on myeloma. I received my diagnosis on 18th Feb 2011 following acute renal failure over new year. US measurments for creatinine are different from UK, which are 60-120 for someone with good kidney function, and 350-600 for someone approaching dialysis. When I was admitted to the emergency room mine was 2000, they didn't understand why I was alive! It's a roller coaster, but I'm still here too. The Dex (once a week - I have Flying Fridays) stops me sleeping, I've been up at the laptop since 1.30, will stop for a cuppa soon. I don't get gastritis with Dex, but I always take it after food. And I too had itchy scalp and chest when first on Revlimid. Looked and felt like chicken pox, dermatologist prescribed Hydromol for washing and it really helped. Amongst other things Velcade gave me a permanently numb right thumb and forefinger, and Thalidomide bad cramps, but I've got the hang of what Revlimid does after a year. Your effective blogging shames me - must try harder!
DeleteHi Meg - thanks for the note. Did you recover from your kidney failure at diagnosis? I'm so lucky that I didn't have any major organ failure other than my bone marrow. Unlike many, I use my blog as my "medical record" so I can follow my own care. I've had a pretty good dose of chemo-brain, so it helps. Take care, jm (Judy Malkiewicz, Mackay, Idaho)
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