Greetings: Kitsap Sun has a group of sharp, sometimes annoying, bloggers I admire most of the time for taking the time to teach and educate the rest of us. Terry is one of them.
A few days ago, several bloggers posted in response to a KS health article and Terry posted a little of his story to another blogger – a hint of his Lymphoma experience and said he would give more information privately. I asked if I could post his story here, so everyone can read it and get the benefit of a person who has been there, done that and survived. Terry’s story should be shared. Sharon
Mantel Cell Lymphoma A survivors story
In 1999, when I was 48, years old, a strange transformation started in my body, large bulbous sacs over my eyes, chronic sore throat and sinusitis, and it just seemed I was always tired, constantly and ever tried. My doctor told me not to worry, the sacs were just “lacteal swelling,” with sinusitis an effect; just cover the eyes with warm bags of water… and it would go away.
A year later I was diagnosed with Stage 4 Non-Hodgkin’s Lymphoma (NHL), a very rare form called “B-cell Mantle Cell Lymphoma,” a difficult to treat disease that (at that time) had a 10% survival rate, and no chance of a cure.
I immediately went into treatment, staying with my usual doctors at The Doctors Clinic in Bremerton, who quickly referred me to the Seattle Cancer Care Alliance (SCCA), an affiliation of UW medicine, Fred Hutchinson Cancer center, and Children’s hospital. The SCCA was selected partly because of two senior fellows, Dr. Oliver Press, lead researcher in hematology (specifically, treatment of NHL) the other, Dr. Ajay Gopal, a pioneer in stem cell transplant; both on staff at SCCA. Both Dr. Press and Dr. Gopal were renowned worldwide as “leading edge” in developing new treatments for blood cancers.
My primary care doctor was Dr. John Pagel, who I still think of as the wizard whom saved my life.
At that time (2002) a new protocol was being investigated, one which involved extensive chemotherapy (HCVAD), total body irradiation (TBI), and stem cell transplant (SCT). The underlying idea was to kill the cancer cells with chemo, harvest stem cells from my blood, than kill any remaining cancers with TBI and a heavy dose of chemo.
The radiation and “killer chemo” destroys not only the cancer cells, but also all other blood cells. Just like other forms of radiation poisoning, if left untreated, death is only a few days away. That’s the purpose of the Stem Cell Transplant. By putting the previously harvested stem cells back into my body, they cause the blood to re-grow healthy cells destroyed by chemo and TBI, and (hopefully) result in a full recovery of blood chemistry, free of cancer.
Two types of Stem Cell transplants were available, autologous, where the patient (me) provides the cells to be transplanted, and allogeneic, where those cells are donated from another person. In my case, autologous was preferable, as it had less chance of rejection by my body, and lower incidence of Graft vs. Host Disease (GVHD), where foreign blood cells cause major skin irritation’s, from intense itching to open sores. Although I’ve never suffered GVHD, from talking with others, I understand it soon becomes unbearable. Thank goodness my cells sufficed.
Remember, this was a treatment preformed over a decade ago, and was experimental at the time. I understand that new protocols have been designed, especially in introducing radiation into the body, which may prevent the need of the Stem Cell Transplant. Such treatment use antibodies which have been specially modified to find and attach themselves to the cancerous cells, avoiding healthy ones. These specially modified cells have small amounts of radiation attached to them, so they irradiate only the cancer cells, leaving other, non-cancerous cells healthy.
That’s a basic synopsis of what was done to cure me (yes, after eleven years, I’m willing to call it a cure) of my cancer, B-cell Mantle Cell Lymphoma. Now I’ll proceed with a more personal report of my experiences of being treated at SCCA, and UW Medical Center. I also introduce my longtime girlfriend Julie, who died of brain cancer on Halloween, last year.
Perhaps at that time, my biggest worry was cost. I know that sounds silly, but at the time, prognosis for survival was maybe three years, I was uninsured, self-employed with limited savings, mostly retirement savings, that could never cover the cost of treatment. Enter the social worker staff at SCCA, who initiated a plan… spend all of my savings on treatments, then apply for Medicaid and Social Security “short term” disability benefits, which I did.
So I blew through tens of thousands of dollars of savings, sold some property I owned, paid some more, then went onto Medicaid. One of the most remarkable things of “paying the bills” myself was how well the hospital, my doctors and diagnostic centers worked with me on reducing costs. I would receive a bill for several thousands of dollars, and most, after one phone call, were reduced by 70%, sometimes even more. When I finally qualified for Medicaid, financing the journey was no longer a concern. I still had to eke to pay household bills, but the small stipend from SSI, food stamps, and income from renting “the other half” of my and Julies duplex paid most of the bills. Some people I’ve talked with, those who choose to not use Medicaid or are otherwise insured, continued working through most of their treatments. All in all, in my opinion, the Medicaid system worked exactly as it should.
I’ve had people ask me: “should someone, such as you, have to lose their wealth to pay for healthcare” And I, in retrospect, respond: “it is always possible to rebuild wealth; it is never possible to recover from death… dumb question.” So here is my story.
My chemo treatments used a protocol called Rituximab HCVAD, standing for Hyper Cyclophosphamide vincristine, and Dexamethasone . The official title is: “Rituximab-HCVAD Alternating Rituximab-Methotrexate-Cytarabine Versus Standard Rituximab-CHOP Every 21 Days for Patients With Newly Diagnosed High Risk Aggressive B-Cell Non-Hodgkin’s Lymphomas in Patients 60 Years Old or Younger.” Whew!, don’t you just love doctor speak. A link to MD Andersons study is: http://clinicaltrials.gov/show/NCT00290498. Note this study is no longer recruiting, making me think there are other, more effective treatments now available. This writing is just my experience, occurring over ten years ago.
My chemo was all administered at the UW Medical Center, in seven cycles, each cycle consisting of five to six days in the hospital receiving chemo, then two weeks resting at home. I had no adverse effects; none of the nausea so often touted as a side effect of chemo, but did feel lethargic and very, very tired after the fourth or fifth treatment cycle. During the entire time of receiving chemo, I was able to function well while in the hospital, most days, walking up and down five flights of stairs for exercise, caring for my own sanitation, and understanding the chemo procedures as they were done, then at home, doing the everyday “things” that needed done around the house. Julie was able to help, but we both were amazed how little our routines changed during these chemo treatments.
To me, the chemo was unremarkable, except that the swelling over my eyes disappeared after the first treatment cycle, and the drug Rituximab (I believe it was called Rutuxin) caused the strangest physical reaction…, which I could only describe as having my face torn apart, but without the pain! It felt like my jaws moved toward my eyes, pulling apart laterally from each other (as I said, it was strange) Anyway, after an injection of Ativan, an anti-anxiety drug… all was OK. Two other long term effects of this chemo regime are constant neuropathy in my feet and hands, often presenting as sharp needlelike “jabs,” and a noticeable reduction in mental acuity, where confusion, short term memory loss, and dis-coordination hamper much of my ability to accomplish work effectively. This latter is well recognized, often called “Chemo Brain,” and it is real. I like to joke that I get the daily effect of drinking… without the expense of booze, or the malaise of a hangover!
The Stem Cell harvest
After half a year of chemo treatments, and much blood analysis, my stem cells were harvested from my blood. I can only describe this as one would envision kidney dialysis, several hours, painlessly hooked up to a machine that sucked blood from my body, processed that blood inside the machine, then replaced it back into me. Again, except for boredom, rather unremarkable.
At the time of my treatment, two options existed for irradiating cancer cells. One Total Body Irradiation, exposed the entire body to radiation, the other, Radioimmunotheropy, where a radioactive antibody is designed and manufactured to specifically target only the cancerous cells. Once attached to the cancer, these antibodies’ deliver a lethal dose of radiation directly to that cancer, thereby saving healthy cells from radiation.
Unfortunately, after my chemo treatments, no cancer cells could be found in my blood, so the antibodys could not be designed for Radioimmunotheropy. .. meaning I had to get nuked with Total Body Irradiation (vs. this more conservative Radioimmunotheropy treatment) . This is the only time I have ever heard that *not* having cancer is a bad thing!
Anyway, Total Body Irradiation (TBI) was a process of several treatments, each where I stood for ten or so minutes in front of a device I could only call a big camera. The “lens” of this machine shot out controlled streams of radiation which irradiated my entire body, presumable killing cancer… and everything else. That’s the downside of TBI, it kills your entire blood chemistry along with the cancer. I actually remember a blood “lab” report, where normally blood counts would read 11.2, 8.1 4.7… this report *after* TBI read 0.0, 0,0.00….yes, it really does kill you.
After several treatments of TBI, I was given a mega dose of chemo to kill any cancer cells that remained in my body, and sent home to marinate for a few days.
The Stem Cell Transplant (SCT)
Well, now’s the big day, so big in fact, it’s often referred to as “your second birthday.” Mine was October 31st, 2002 (yes, my second birthday is Halloween… very appropriate for a heathen such as I, and BTW, Julies favorite day of the year)
Again, for something so important, it was rather unremarkable. It was really nothing more than a blood transfusion, a bag of my own stem cells delivered intravenously over an hour or so. The only remarkable thing about the SCT is the stem cell solution is preserved with DMSO, which caused the most obnoxious sensation of “smell” once it enters the body; sort of like snorting bleach, but worse.
So, once again, after the transplant, I was told to drink a lot of water, piss out the bad stuff, go home and come back when the real effects of the SCT hit.
The real after effects of SCT
During the TBI and SCT phase of treatments, Julie and I were temporarily living in a small apartment in Seattle. This is because the SCCA felt it necessary to be near a treatment center and Port Orchard too far away. In retrospect, living near the hospital was a good thing.
I felt good for a few days post-transplant, Ok for another few, and kind of tired and lethargic for several days after that… then completely depleted, barely able to move; a week after TBI I literally was unable to move.
Julie drove me to the SCCA, where I passed out, and awoke in an ambulance driving me to the UW Medical Center; where I spent the next three weeks in an isolated room, free from any germs that could infect my immune system. It actually was quite cool, a room where double doors isolated me from the outside world; a nurse would walk in, close the outside door; then clear the air, open the inside door, and walk into my room; repeating the process for egress.
I don’t remember much about the next three weeks, except for the little red morphine button, which I kept pressing with no result. I remember nurses telling me to get out of bed, clean myself up; walk around the room, get a little exercise… all to no avail. I just wanted to lie there, and frankly, hoping to die. Julie would come into this isolated room to console me, and I’d tell her to leave. It was not a good time.
During this phase of treatment, you are fed intravenously, and have no real food… surprisingly enough, it doesn’t matter. You have a TV, you have visitors, but curiously enough, once awake and aware, all I wanted to do was go back to sleep.
As a nurse later told me: “you had a tough time of it,” and in retrospect, she was right.
But things got better. My blood counts recovered, my situational awareness improved, my health recovered; I could get up and walk around. After three weeks, I was released from the hospital, and went back to Julies and my apartment.
What I remember of the next month, while living in Seattle, was how cold I was. This was December. Pre transplant I was short and fat, around 210 pounds; post recovery, short and skinny, about 150. I had lost a lot of fat, and it seemed where ever I went, the grocery store, the laundry, for walks around the blocks… I was constantly cold. That lasted for about half a year.
Julie and I moved back to our house after half a year in Seattle, a few months after my transplant. It was a long, slow process for recovery. I could work for half an hour, say mowing the grass, then become so tired I’d collapse, lying on the ground, not really aware and panting to catch my breath; freaking out both Julie and my renters next door; who, I can only imagine thought “he’s finally dying.”
This went on for well over two years, but slowly my health improved. About three years post-transplant, I had an epiphany… I wasn’t living a recovery… I was just waiting to die!
Here I was, newly healthy, cancer free, rebuilding my strength; and told by the experts my disease had no cure, my prognosis three to five years to live! I knew that wasn’t right.
That was eight years ago. I’m still alive, I’m still healthy. The worst effects remaining of my cancer is neuropathy, chronic fatigue and what I call “old man brain rot,” where… well, my brain just doesn’t work like it should, and I’m kind of stupid.
But I’m healthy. I wake up in the morning sucking air. I say a little prayer each day, I pray: “Thank you for my remission, I appreciate it. Please, until my relapse, guide me how best to help those worse off than I.” Amen.
See? It’s a prayer… in no way can It hurt.
I understand that now, a decade after my treatments, B cell Mantle Cell Lymphoma victims have a 50% survival rate to five years, and I have to think, somehow, those prayers helped.
Thanks for listening… Sharon