April 14th marked the end of my 39th cycle of post-transplant chemotherapy. As usual I donated several vials of blood and a gallon jug of urine (24 hour urine collection) to the UofM Cancer Clinic, then met with Dr. Jakubowiak and his new MD fellow Dr. McDonald to assess my progress. The good news – the cancer remains in “complete remission.”
My Adhesive Capsulitis (shoulder pain – aka “frozen shoulder”) is now at a steady state. If I visit the gym and exercise regularly the shoulders stay lose and the pain is minimal. If I avoid the gym they hurt. I know how to manage this problem.
My transition from private medical insurance to Medicare seems to have gone without a hitch. There have been no big coverage or co-pay surprises. Yet. Amazing…
SOME EDUCATION ABOUT MEASURING CANCER REMISSION
Each clinic visit includes blood work and submission of a 24 hour urine sample. From those the staff measure immune system function and activity of the Myeloma. The important immune system indicators are the blood’s ANC (neutrifil) and WBC (white blood cell) counts. The cancer indicator measured in the urine is called a Bence Jones test {news to me! google Bence Jones – interesting material}. Fortunately my Bence Jones results are listed as “trace amounts, too little to quantify.” As long as that number stays low, things are good; when that number climbs… well, things will not be so good.
IMMUNE SYSTEM PROBLEMS
Speaking of ANC and WBC indicators… my immune system is in lousy shape. I’ve suffered a few really bad colds since my last blog report, and the intervening lab work has shown that my counts are lower than they’ve ever been. Despite poking myself with prescribed Neupogen injections, my immune system has not responded well.
NEWS FROM MY CLINIC VISIT
The immune system issues mentioned in the previous paragraph are not unexpected – in fact they are the known side effect of the Revlimind chemotherapy drug that I have been taking for three years. Dr. J decided to give me a month’s “vacation” from Revlimid, and thereafter to change my dosage and regimen. So in the next 30 days we hope that my body will have a chance to resume normal operation, after which my dosage will change from a daily 10mg pill taken for 2 out of 3 weeks, to a daily 5mg pill taken for 3 out of every 4 weeks.
SIDE EFFECTS
Neuropathy – Nothing new. Although hardly noticeable most days, I am anxious to see if my symptoms change when I don’t receive Revlimid for 30 days.
Neutropenia – My immune system blood counts have trended lower and become less predictable, per previous paragraphs about my month’s vacation from Revlimid. Stay tuned…
NEXT STEPS
I’ll have lab work and resume the Revlimid on May 10th. Very interested to see what changes.
In the mean time, knowing the germ fighting capability of my immune system is at all-time lows, I must be ever-diligent about handwashing and avoiding people with germs. Purell is my constant friend.
That’s the latest news from Hamburg.
-larry