Ron Singleton
Bill,
Thank you for passing along the information about Lewis Carter and his recent cancer diagnosis. I will keep Lewis in my prayers, and I feel confident that he will have a successful outcome.
I, too, will have to miss the upcoming reunion, and for a somewhat similar reason. Here's my story.
In July of last year, I was diagnosed with bone marrow cancer, called AL Amyloidosis and multiple myeloma. I had never heard of this disease until that point. I'm told that it's not an inherited disease, and it's not contagious and it's not something that is contracted because of a particular lifestyle. Some people just get it -- like winning the Lottery, but in reverse. I had no symptoms other than a little fatigue.
A couple of years earlier I had just completed my third annual trip to New Zealand to hike that country's Southern Alps (where Sir Edmund Hillary lived and trained for his Mount Everest climbs). I would stay for three weeks at a time -- and, to say the least, I have always maintained a vigorous and health-conscious lifestyle. My urologist, during an annual checkup, told me a year ago that I had too much protein in my urine. That didn't sound so bad, but then an evaluation by a nephrologist told me that my kidneys had shut down (hence the loss of protein) because of the bone marrow cancer, which attacks different organs of the body, especially the kidneys and heart.
To make a long story a little shorter, I went through 24 weeks of chemo treatments last fall, which greatly reduced the effects of the cancer. Doctors then recommended me for a "stem cell transplant" at VCU, which is not easy to obtain. For one thing, it costs over $250,000 (fortunately most of my costs were covered by insurance) and only a limited number of people can be admitted into the program. It's new technology and a relatively new procedure, popularized in just the past decade, very much like Lewis Carter's CAR-T procedure. Both procedures use the body's immune system to attack the cancer and allow the body to regenerate itself.
In my case, it's a procedure that extracts stems cells from your own blood, which are then given back to you intravenously after you are exposed to a 15-mnute high dose of chemotherapy that kills or wipes out nearly all of your existing bone marrow. New marrow is grown from your body's "miracle" stem cells, and the effects of the cancer are greatly reduced. There are a few caveats, however. As the doctors explain it, you are never completely free of the bone marrow cancer (AL Amyloidosis and multiple myeloma). It's something that stays with you for the rest of your life, and the hope is that it can be kept manageable for a period of time through a healthy lifestyle and "maintenance" chemo treatments.
As Carter explained about his upcoming procedure, the treatment is not a particularly easy one. In my case, the normal patient has to stay isolated in the hospital for about three weeks and then in the hospital's nearby hotel for another two weeks. Your immune system is taken down to near zero, so you are extremely susceptible to viruses and bacteria. For the next 100 days, after release from the hospital, you are not allowed to have contact with anyone other than your caregiver (I could not see my children and grandchildren for nearly six months) and you can only eat food specifically prepared for you by your caregiver (in my case, my wife of the past 48 years), which means no restaurant food, takeout or anything prepared by others. There's no cutting grass or digging in the soil, which is an extremely tough restriction for a certified Master Gardener like myself. The list of restrictions goes on and on, all in an effort to reduce the chance of catching something that could attack your body while your immune system is so vulnerable.
In all, it takes about 18 months to "grow or rebuild" your immune system. This fall I'll start getting my childhood vaccinations over again, a process will take about eight to ten months. Just recently I was released from my first 100 days of restrictions and I was able to see our daughter and grandson, 5, for the first time since Christmas. My stamina is greatly reduced, but I've been given permission by my doctors to renew my gym membership and to enroll in cardio swim classes once again. I don't think I'll ever be able to climb mountains again, but I'm grateful to be able to walk a half mile around our neighborhood without being totally exhausted. I'm told that 50 percent or more stem cell transplant recipients survive for five years or more, and I'm hopeful of being in that group.
Lastly, I want Lewis to know how very fortunate he is be able to qualify for CAR-T procedures to treat his particular cancer. When I was at VCU during my five-week stay, I met a couple of people who were undergoing the treatment and their recovery was much better and faster than those treated with other methods. CAR-T is an even more recent technological advance than stem cell transplantation, and available for treating only a few specific cancer types. For example, it has not yet been developed for treatment of my own cancer. If it had been, I would have jumped at the chance to be in that group. The technology is coming, but will take several more years to develop. Since the CAR-T treatment has to be developed specifically for each individual patient, the process is slow, expensive and only available for a very few select patients. We are fortunate that the VCU Massey Cancer Center is one of the leaders nationally in the development of both stem cell transplants and the CAR-T technology.
I apologize for this somewhat lengthy epistle, but it is primarily designed to provide encouragement for Lewis and anyone else who may be experiencing a somewhat similar diagnosis. There are a lot of us out there, and there will be more in the future. Fortunately, technology is advancing rapidly and is giving hope to many of us who find ourselves having to deal with such a life-challenging event sooner than we anticipated. Like most experiences in life, we don't get to pick and choose which diseases we contract or which setbacks befall us, but we can control how we deal with these challenges, how we go forward and how we choose to live the days that we have left to enjoy.
I'll miss attending this year's reunion, but will hope to rejoin the group another year in the future. And, as Lewis stated, I appreciate the support of fellow classmates and your prayers -- especially for my wife, as caregiver, who has had to bear a far greater burden than my own. If not for her, I would not have been able to participate in the stem cell treatment program at VCU. Caregivers are so incredibly important and an essential component for survival, and I am grateful for her support and assistance beyond measure.
Best regards,
Ron
Ronald Singleton
Fredericksburg, VA
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Email message from Bill Irvin on 7/13/23:
I pass along this prayer request for Lewis Carter. He was planning on coming to the reunion, and still hopes to, but he was just diagnosed with liver cancer and is awaiting results of a biopsy to determine the stage and possible treatments. He does not intend to do chemotherapy, but his oncologist has made him aware of new treatments.
This is from a lay person's non-medical perspective:
Many of you may be aware of advances in a cancer treatment called immunology, including chimeric antigen receptor (CAR) T-cell therapy, which involves extracting a small number of white blood cells called T cells from a patient’s blood, then genetically modifying them to kill cancer, and infusing them back into the patient. The genetically engineered CAR T cells continue to replicate in the body, generating a population of hundreds of millions within a few days – a veritable army of cancer killers. The entire process takes about two weeks, as opposed to other processes that can take months.
Another new treatment being studied redirects the killing potential of T cells by linking two antibodies to create a bispecific antibody that binds to both T cells and tumor cells. The bispecific antibody forms what is called a “killing bridge” between the killer T cells and tumor cells. Infusions of the targeted T cells kill tumors and release tumor proteins that vaccinate patients against their own tumors.
These and many other new treatments are still experimental, are not approved yet by the FDA, do not work on all cancers, have potentially serious side-effects, and not everyone is a candidate, but the takeaway is this: do what you can to extend life and let the science catch up to you.
In case you want to send a card or note:
Lewis T. Carter, 403 Duster Lane, Richlands, NC 28574
Or you can leave him a message in Message Forum.
If you want prayers or thoughts directed your way, or just to talk about a serious illness, just give me an email and I'll get back as promptly as possible.
Bill -- wirvin@irvinlawfirm.com
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