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Bob Rinker

 

bob.rinker@comcast.net

1942 / Class of '94 / Type: IgG / Spine fracture / Updated: 1/09

Age at diagnosis of MM: 51

When I was growing up, we moved around every few years - my father was in the service. We mostly lived in suburbs. We also lived overseas - in Trinidad, BWI, and in Naples, Italy.

Prior to my diagnosis, my health was excellent - never hospitalized, never had surgery. I was a military pilot for 20 years. I always passed detailed annual physical exams with no problems.

In 1994, my GP noticed a low HgB count on routine physical exam. He did further tests for an IgG spike and found it. I'm currently being treated by local Hem-Onc.

I started out with an IgG level of around 3000g/dl. I am now down to about 1500 and holding fairly well. Hg is about 12-13 now, was down to 9.

For treatment, I started out with oral M&P for the first 4 months after diagnosis. My Oncologist was not happy with the rate of progress and so added 6 million units of interferon 3 times a week, which continued for 3 more months. I made contact with a local stem cell transplant specialist and started VAD for two months to get the disease down to a low level with an auto-stem cell transplant to follow. The cancer was beaten down to an acceptable level, but bounced back before the Stem Cell transplant could be set up. I also had problems with pneumonia. I did 2 or 3 more months of VAD with short breaks because pneumonia was recurring. I finally got to the point where the stem cell seemed possible, but pulmonary function test showed reduced lung function - possibly due to the pneumonia, possibly due to the VAD or possibly due to something else. My pulmonary doctor didn't know, but the condition was irreversible at any rate. The stem cell doc got cold feet and called it all off. I went back on 2 months of M&P with 3 million units of interferon 3 times a week. My disease seemed to respond well to that, with IgG level dropping to 1400 range. The last month I have been trying just interferon to see if we can hold the cancer at a low level that way.

Currently, I have minimal symptoms. I have some tiredness due probably to slightly depressed HgB., some swelling in lower extremities (am on Coumadin to reduce effects of increased blood viscosity), some occasional skin disorders. Nothing that is really debilitating. No bone lesions, no kidney problems. The symptoms have improved since treatment. The tiredness is less than it was, and blood clots have stopped.

Since I last reported, my plateau has continued. I'm holding pretty steady at an IGG level of about 1600. Last BMB showed only a few plasma cells - doc characterized it as almost normal. In June, I had a stem cell harvest with growth factor (Nupogen) only - no Cytoxan - and now have enough stem cells in storage for two transplants. I am currently on Aredia (90mg/4wks) and interferon (4.5mu 3xwk) and will continue this as long as it works. After that it may be time for the stem cells.

June, 2000: I am still doing quite well with only Aredia (90mg every 4 weeks). The IGG level has been slowly creeping up over the last year, though, now a little above 1700mg/dl. My Onc says he is not concerned yet, but it may be getting close to time for a little more aggressive treatment.

Feb, 2001: In the summer of 2000, my IgG count started to rise - about 100 points a month and steadily. By January 2001 it was up to 3000 again. We decided to continue the monthly Aredia and to start pulsed Dex (40mg/day for 5 days then 9 days off). After 2 cycles of the Dex, the IgG was down to 1800. The plan is to continue at least 2 more cycles of the Dex and see what happens.

April, 2004: In the spring of 2001, we eased off the Dex to see if the plateau would hold. After a couple of months, it became apparent it would not, so I went back on pulsed Dex with a 4 week cycle to try to beat the beast back. That seemed to work fairly well until the spring of 2003, when the IgG started upward again. I went back on the two week interval for the Dex pulse. By fall of 2003, it became apparent that that wasn't going to do it - the IgG was not increasing quickly, but it was continuing to creep upwards. Further, the two week Dex pulse cycle was starting to take a toll on me generally. So the next step was to add Biaxin to the mix, and go to a 3 week cycle. In December of 2003, I developed an abscess in my colon, unrelated (we thought) to the MM. That required a weeks stay in the hospital the first of January 2004, and suspension of all treatment for the MM while I dealt with this. At the end of January, we started the Dex and Biaxin again, as the IgG was now up in the 6000 range. After the second pulse, the colon abscess reoccurred and hospitalization with subsequent surgery was necessary. Again all Myeloma treatment was stopped.

As of now, the IgG is fairly stable at about 6200. Low hemoglobin is the only other symptom I have. No bone involvement - I have been on Aredia continually since 1995, at a dose of 90 mg over 2 hours every 4 weeks, and that continues. I am receiving no other treatment for the Myeloma while I complete healing from the surgery. At the end of this month we will look at the numbers again and see what will be next.

February, 2006: After the surgery and recovery period, my Onc and I decided to try a combination of "monotonic" Dex (2 mg every other day) and Biaxin (500 mg twice a day), while continuing the Aredia. IgG dropped to about 3000 mg/dl where it has essentially remained. In September of 2005, I started adding curcumin to the mix - (900 mg tabs 3 tines a day) that kicked the IgG down to about 2600, but the last check showed it back up to near 3000. Will continue the curcumin for a few more months and see what happens. I still have no bone or kidney involvement and have had no plasmacytomas. I have suffered some hemoglobin crashes - we can't figure out what is causing them. My body recovers after a few weeks and I go back to my chronic anemic state (hg about 11 to 12 (normal 13+). I also have been suffering from a continually low energy level and fatigue. More than would be explained just by the anemia. Again a mystery as to why. When the current treatment fails, I plan on going to one of the more recent drugs - Thalomid, Revlimid or Velcade, depending on where the FDA approval process is when the time comes.

August, 2006: In July of 2006 I developed a nose bleed that just wouldn't stop. Went to the ER and they finally got it stopped 12 hours after it had started. Needless to say, I had lost a lot of blood and my HgB got down to 8, so it was into the hospital for 4 days, and 2 units of blood. I also was taken off Coumadin. The anemia continues to be a problem and I am getting weekly Arsenep injections. It now is up to 11.6. We don't see any particular reason, other than the effects of the Myeloma on the bone marrow production capacity. I continue with the monotonic Dex, Biaxin, and Aredia as treatment.

September, 2006: Back in the hospital. We thought it was pneumonia. Treated with antibiotics and that seemed to do it. October 2006 in the hospital again. This time we realized that what I had was a pulmonary edema. A DVT had again formed in my left leg and had migrated to my lungs. Treatment was effective and it was back on the Coumadin. General health was not too good. Continued with the Dex and Biaxin.

October, 2007: Suffered compression fracture of the spine. Bone chip damaged spinal cord and legs were paralyzed. HgB was also low enough that I was put in the hospital again. Stopped Dex and Biaxin. Spine doc says any surgery do dangerous with bone fragment where it was.

December, 2007: Got out of rehab with some control over my legs. In a wheelchair, but seeing some improvement.

February, 2008: Started Revlimid treatment. It dropped the IgG but also gave me aplastic anemia. Several blood transfusions and end of Revlimid seems to work out ok. Able to move around with a walker now.

December 2008: Slow improvement continued over the year. Went from wheelchair to walker to cane to being able to walk fairly normally without any assistance. Cannot stay on my feet for very long, though. Have pretty much continual back pain, controlled with Oxycontin. Energy level up, primarily due to HgB coming up to near normal. Have had no treatment for the MM since the Revlimid. Last labs showed IgG at 2600. Higher than the Onc would like, but since I feel good and have no other noticeable problems, we are going to leave it alone for now. All in all, functioning fairly well.

 

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