Reading, MA; firstname.lastname@example.org
1952 / Class of 1995 / Type: IgA / Bone involvement / BMT, Decadron, new
In February of 1995, I went to on rare visit to my primary MD for the purpose of having a physical exam performed as one requirement in the long process of getting into a program to become a Nurse Anesthetist. Other than chronic low-grade back pain, I was the picture of health, or so I thought until it was discovered that I was anemic; which led to the workup that revealed Grade 3 IgA myeloma. X-rays showed old compression fractures in my lower back, lots of skull lesions, a couple old rib fractures and a spot on one femur.
I was 42 at the time, and my primary oncologist told me that my only real option was a bone marrow transplant. I got to meet the great folks at the Dana Farber, and, when none of my four siblings or three kids was greater than a 3 out of 6 tissue-typing match, the docs gave me an instantly redeemable ticket to a mind-spinning roller coaster ride that’s now lasted almost ten years.
In my medical references, I read where myeloma is “invariably fatal.” I inferred from a medical journal article that given my situation, going for a BMT, the “median survival” was a little less than three years. It definitely made it hard to consider any long-range planning. And the fear it created prevented me from being able to deal with things in the present.
I had four rounds of VAD prior to the transplant. The vincristine introduced me to peripheral neuropathies, and the pulsed decadron made me only slightly psychotic. It was probably at its worst when I became paranoid and accused my wife of conspiring with the doctors to sabotage my care. The triple play of experiencing the total loss of control over my life, trying face the uncertainty of what the future held, and witnessing the rapid alterations in what I previously thought was my healthy body was more than I could deal with rationally, so I chose the alternative.
I had Hickman catheter placed for the chemo but after a month developed a blood clot in the vein it sat in on the right side of my chest, so had to have it replaced on the left. Immediately after leaving the recovery room with my newly placed second catheter, I proceeded immediately to a Warren Zevon free lunch concert across town. (He died about a year ago, in ’03, after well-publicized battle with mesothelioma, a lung cancer.) He had once written a song about boxing with a line in it that goes, “If you can’t take the punches, it don’t mean a thing.” I was hoping to hear that song, thinking it would be slightly inspiring, and if not, at least it was appropriate for my circumstances. I missed the song, but got to talk to him after the show. I realized that day that no one knew what my future held, but that I was the one that would make it what it would be.
I was an inpatient at “the Farber” for 17 days for the autologous peripheral blood stem cell transplant. Thanks to the nurses’ judicious use of medications to control pain and nausea, I have very little recollection of my time in the hospital. I was enrolled in a clinical trial where half the patients got cells that had been selected to theoretically leave fewer residual myeloma cells to be reinfused, and the other half got the un-selected cells. I was in the untreated batch of patients. It took me three or four months before I was 90% back to my former self. But I got through the acute process without one major complication, and my IgA stayed at or below the normal range until the fifth anniversary of my transplant.
I had gone back to work half time, was the coordinator of a regional group of myeloma patients and friends, had three teenage kids who kept me having any time to dwell too long on my health. I was getting monthly pamidronate (Aredia), but otherwise had no real treatment for my myeloma. (In the myeloma group, I met a guy, a little younger than myself, who lived very close to me in high school. We found that we both had (trespassed on and) explored the carcinogen-contaminated property of a local chemical plant without having any idea of what we doing…..)
When my IgA started a rapid climb in 2000, I enrolled in the initial study of Revlimid, an "imid," a thalidomide analog. But it was still at a dose-testing phase and I got less than a therapeutic dose, so my numbers continued to climb. I switched to a straight thalidomide course of treatment, and got up to 400 mg per day. But I was a walking zombie most of the time, the neuropathy in my feet was reawakened, and my IgA was not coming back down.
The trials of PS-341 had started just a few months before, and I was offered the chance to come to the Farber two mornings a week for the next six months or so. I figured if it gave me a chance to get away from thalidomide for a while, it was worth a try. With a month, my feet became numb and painful at the same time. It felt like I was always walking on marbles, and I lost 80% of the temperature sensation below my knees. In terms of IgA reduction, the PS-341/Velcade didn’t accomplish all that much on its own, so Decadron was added; my wife threatened to leave me because I was impossible to live with again; and I came off the Velcade when my IgA again came down to normal. That dip lasted only a few months before it started bumping its way back up. I then went on thalidomide and Decadron together (at reasonably well-tolerated dosages) for 18 months, and again, I got back into the normal range. For the last few months I’m down to 20 mg of Decadron once a week and get a monthly infusion of Zometa. My IgA is stable. Generally, I feel pretty good. My stamina’s not what it once was, and I find myself occasionally moaning and groaning with my usual aches and pains, but I’m still able to do just about anything I want.
In September, 2004, I spent a week canoeing and hiking on the Green River in southern Utah. Part of the trip was an opportunity to see some magnificent desert wilderness. And part of it was a way to prove to myself that at 52 years old, despite having dealt with what now seems almost like a chronic rather than fatal medical condition, that this disease hasn’t beaten me yet.
January, 2009: Early in 2005, I awoke one morning to find that my left arm felt "heavy" (for lack of a better term). When I went to shower, I noticed that all the veins on my chest were much more prominent than I'd ever noticed before and my neck veins were distended, especially on the left. I knew something was up and called my primary doc who sent me immediately to the Emergency Room. After a few imaging studies, it was determined that I had large blood clot in my left subclavian vein that was essentially blocking the vein and preventing full flow from my left jugular vein. Although no one could explain why this occurred when it did, everyone was relatively sure that the clot was related to scarring in the vein from the Hickman catheter that was placed for my autologous transplant almost ten years earlier. I was admitted for a few days and was discharged on Coumadin (an oral anti-coagulant), which I'll be taking for the rest of my life.
During the following year, I continued on low-to-moderate dose Decadron (20 mg once a week) and my IgA stayed remarkably stable.
In the Spring of 2006, my friend (who accompanied me on my '04 canoe trip) and I decided to try it again, this time on a smaller river in east/south/central Utah. We floated down the river with almost no sign of civilization until we started to see more and more evidence of the Bush administration's sale of drilling and exploration rights in the Utah desert. It got to the point where there was a constant noise of heavy industrial trucks and drilling apparatus in the background. We'd take an occasional hike to the top of a nearby hill to find a beautiful scene of desert mesas, the river below us, and the valley marred by oil derricks, wells, and trucks with clouds of dust rolling across the basin floor. So much for the pristine wilderness. After six nights on the White River we had left most of the drilling behind and were approaching the confluence with the Green River. We pushed our canoes off from our last campsite and soon we were ducking for cover. There was a zipping-whooshing sound that passed just above our heads, followed half a second later by a large crack. Then again. And again. Someone was firing what must have been a high-powered hunting rifle at us from the scrub on the banks! Luckily, we were a couple hundred feet from the bank and we soon floated out of range.
The episode definitely gave me a different perspective on my myeloma. Having a "potentially fatal" disease that you can have some control over (at least in terms of treatment decisions) is very different that having to keep your head down to keep living until the next minute.
In the middle of 2006, my IgA started climbing agin, and I began treatment with Revlimid 25mg a day in addition to the decadron, and once again, I was happy to have my numbers return to acceptable levels. I continued for 15 months without any noticeable side effects or complications. I went in for my monthly Zometa and went on my way.
One night while surfing the Web, I found a website that listed the maximum price that Vermont Medicaid would pay for medication reimbursement to insurance companies. The price for Revlimid 25mg was $387.00 per dose. I was on the drug for 21 days out of each month, coming to a total of $8,127 per month. Plus the Zometa, which is approximately $1,200 per dose, brought the total to $9,327 per month. And if you want to include doctors' visits, I'm sure the price would top out at over $10 grand a month! I thought, "That's absurd! These prices are outrageous and surely exorbitant." But then I realized that given the benefits that I was getting from the meds, I wouldn't want to stop taking any of them. If anyone wonders why the price of health care insurance is so high, you have me to thank.
In October 2007, I raised a good chunk of change for the Leukemia and Lymphoma Society as part of their Hike for Discovery program, and was lucky enough to get to travel to the Grand Canyon with a bunch of other fund-raisers and got to hike into the canyon. Going down was a blast; on the way back up I was sure that I had made a serious error in judgment. I was literally taking two steps, having to rest, and then taking my next two steps. But I completed the hike, and it is an achievement that I did in honor of everyone with myeloma and in memory of Steve LeBlanc of Nashua, New Hampshire and Mike Campbell of Somerville, MA, two close friends who I've lost to this disease.
Toward the end of 2007, my IgA again started to slowly climb out of the normal range, and since I wasn't having any complications, there was no urgency to do anything dramatic. I went back for a consultation at the Dana Farber and decided to enter a clinical trial for perifosine, a new drug to be used in combination with Velcade. It kept my numbers at a stable level, but never really provided all that much benefit. I lost 18 pounds over 8 months due to a loss of appetite and decided we had to do something else.
I had always thought that a second stem cell transplant was out of the question. I was wiped out for a good while after the first, and never was able to return to work full time due a lack of stamina (as well as chronic back back from three vertebral compression fractures) so I wasn't all that excited when my oncologist at the Dana Farber suggested a "mini-allo" transplant. But after a month of research and considering other options, none of which seemed likely to provide any long-term benefit, I consented; and on January 12, 2009, I had stem cells infused from a 28 year-old man with a 10-out-of-10 match. (My deepest thanks to whoever you are.) I'm now two days home from the hospital and feeling almost normal.
I came home with 16 new prescriptions, including sirolimus and tacrolimus for anti-rejection and Neupogen to stimulate white cell growth. The Neupogen was delivered separately yesterday by FedEx. Included in the box was a copy of the bill that will be submitted to my insurance company: $4,370 for a 10-day supply.
I don't have any idea what the cost of the hospital admission for the "non-myeloablative matched-unrelated donor stem cell transplant" will be. But I'm back on "full disability" for at least six months and possibly up to a year, just so I could be an additional burden on the insurance system.
If luck enters the picture at all, I guess I’m incredibly lucky to have this disease at a time when researchers are continuously making huge strides in the understanding of the biology of myeloma. New therapies and innovative drugs are constantly being developed and tested in clinical trials. It's almost 14 years since I was diagnosed and I plan to continue to be a burden on the medical and financial systems for many years to come.
It’s enough to make a even a cynic hopeful.
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