Durham, NC; email@example.com
1936 / Class of '94 / Type: IgG / Spine reconstruct + X-ray / Relapse, chemo / Updated: 8/15
1993 – While changing a bulb in the stairwell down to the basement I had to lift a heavy steel ladder. A cracking sound and subsequent numbness in my legs led me to believe something was amiss. My first occurrence of MM was indicated by paralysis below the waist. I had waited weeks imagining that things were getting better before admitting that friends should carry me to the hospital.
After many rounds (22 as I remember) of X-ray treatment to quell the plasmacytoma in my spine I was shocked when told that I needed surgery to replace a missing thoracic vertebra. The operation took place on January eighteenth of 1994. As the operation progressed the surgeon found that two vertebrae were involved and had to be replaced. The operation lasted 12 hours while they waited for the proper titanium braces and cadaver bone to be fabricated. After the operation I was only 5’8”. At one time my height was 5’11”.
1994 – After being released from the hospital on January 24th, I began exercises on my deck walking and interlacing right foot, left foot interminably. It wasn’t until June 6th that the Division of Neurosurgery sent a letter to my employer saying that I may increase my work hours from 4 hours, 4 days/week to 6 hours, 4 days/week. There was much discussion as to whether crutches or wheelchair was safer as I negotiated the laboratory. After a half-hearted attempt at the wheelchair, I sneaked around on the crutches that I favored. I returned to full-time work on August 21st of 1994.
1997 - My blood chemistry was monitored for years and the hematologist on August 15th was more concerned about my borderline LD cholesterol than about my essentially normal blood work.
2007 – Now retired, while helping to dig and yank out six shrubs from the flower beds in front of our community I crushed a few vertebrae at the base of my spine. I soon experienced numbness in my feet and presented myself to the hospital where I just told them that it was multiple myeloma. Apparently, the MM had returned. I had to undergo a course of X-rays.
2008 – My IgG was 4182 on September 21st. It reached 5826 by January 2nd. That was the first day of Revlimid/ Dexamethasone (25 mg/40mg) treatment. I was experiencing extreme constipation with the Revlimid and the Dr. agreed to reduce the dosage to 15 mg/40mg at one point. During that whole year my IgG fell until it bottomed out at 1001 on October 22nd.
2009 – In an attempt to give me relief from constipation we next tried Alkeran/Prednisone. This treatment was ineffective as my IgG rose to 2263 on February 16th. Next I assented to start Velcade/Dexamethasone which had been reluctant to do because it required a drive to the hospital and being hooked up to a bag of glucose while infusing the Velcade in about 30 seconds. The short infusion time is sometimes extended to three or four hours due to the wait for blood cell count and pharmacy delivery of the little syringe of Velcade. By July 7th my IgG was back down to the normal range at 1124. The Dr. put me through 8 cycles of the Velcade after which my IgG was 1252. This was cause for celebration since he gave me 60 days off.
My blood was so saturated with Velcade that I still have diarrhea a week later and my weight is down to 120 lbs. During these 168 days (8 cycles @ 21 days each) I developed a wicked case of shingles which required that I take Valtrex to suppress the virus. For the wincing pain I take either Gabapentin or Baclofen. As if these side effects were not enough, food tastes like soap leading to loss of appetite. Yes, I also have neuropathy. My weight continued to slide down to 115 which was scary.
We are hoping that the IgG numbers stay in the normal range after all of this. I’m currently taking a Alendronate sodium (Fosamax) weekly. The Dr. winces every time I mention Fosamax. He would love for me to get into one of the chairs at the new infusion ward for Zometa but we already tried it and I suffered pain in every bone that I ever injured.
2010 – No more high-dose chemotherapy for me. The doctor’s recent
recommendation is a low-dose maintenance chemotherapy. As of August 8th I had
completed three cycles of Revlimid at only 10 mg for 21 days with 20 mg of
dexamethasone each Monday. Then I got 7 days off. My IgG number has come down to
965, which is about as low as it has ever been. I have a hearty appetite and am
loving cooking gourmet meals again. Digestive problems are gone. I’m gaining
weight now and feel fit at 125 lbs.
2013 - My doctors at UNC’s Lineberger Cancer Center have been extremely cooperative by allowing me to access my test data and to help guide my treatment. I am currently using the 20 mg of dexamethasone on Friday of every week. This used to be the treatment for MM. The Revlimid dosage is now 5 mg every two days for 21 days with the 7 day hiatus. My body weight (130 lbs.) seems not to require the large dosages I was using in past years. I have tried three months with only the dexamethasone and my IgG was virtually unchanged at a little over 1000. I am now alternating a month on the Revlimid and a month off. I start to feel “normal” during these off months, with much less dizziness, fewer hematomas, better appetite…just generally feeling good. The docs think that I have a smoldering case of MM.
2014 – The Revlimid (2.5 mg/day) has ceased to work. The IgG numbers were under 1000 from October 2009 until August 2013 when they rose to 3377 by May of 2014. Felt miserable.
I was invited to join at UNC Lineberger Cancer Hospital study with Celgene successor to Revlimid, Pomalidamide. I am currently taking 2 mg/day for 21 days of Pomalyst. Every Friday I take the dexamethasone (20 mg) and Ixazemig for 3 Fridays/ cycle. The serum IgG numbers have fallen to 1199. I hope that they will fall below the 900 that Revlimid gave at its best.
2015 – The Pomalyst at 2 mg/day brought my IgG number down to 1700 or so which is the upper limit for the normal range. That along with the dexamethasone at 20 mg (5X4 mg tablets) was my regimen until eight weeks ago. I won’t mention the study that I underwent recently but it had to be terminated when we found that the vertebra at the base of my spine had disappeared. Spinal stenosis and my wobbling and instability required a walker and cane for a while but I walk unassisted now.
August 10th - For the last two cycles I took the 2 mg pomalyst capsules for 3 days, one day no cap. That gives me a dosage of 1.5 mg. The IgG number is now trending down below the max limit, at 1570! At this dosage I have no constipation, no leg cramps. We’re hoping that the IgG will go even lower.
I was born in Philadelphia and spent my life as a chemist working for many companies. Yes, I am one of those who inhaled many types of petrochemicals, m-pyrol, hydrochloric acid, ethylene diamine, etc.
I continue to participate in our hiking group every Saturday and as their webmaster (http://triangletravels.com). Also am the treasurer of the local camera club leading their Digital Discussion Group every first Tuesday of the month.
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