My Journey with Multiple Myeloma

 Many friends have asked me about both my disease, my prognosis and for updates. I'm taking a cue from a friend and fellow minister, Dr. Guy Sayles, who has been dealing with MM for over 8 years. I will be writing here once a week or so, depending on what's going on with me.  This journal will be a combination of medical updates, personal thoughts and even some realistic spiritual struggles. My hope/intent/prayer is that this journal will help others dealing with medical/personal/spiritual issues to gain some courage to face them as well.

If one "must" have a blood cancer, Multiple Myeloma is one you would pick. Though incurable, MM usually can be put into remission for a significant period of time. From talking with and reading the accounts of others life from this point forward will probably be about remission and relapse. I just hope and pray the former times far exceed the latter. However, there are no guarantees. We do know that the human body eventually wears out and dies. Even in Hunza Land, where people regularly live to 120 or more, they all die. 

To begin with I will share three aspects of my current status: Medical Prognosis; Personal and then Spiritual. These will be placed on my Blog — Dr. Bob’s Blog — where once upon a time I posted sermons. 

Medical Prognosis

For several years I had been 'afflicted" by lower back issues -- not uncommon for golfers as they age. In the spring of 2020 the issues grew more severe. An MRI revealed arthritis in the lower spine. I underwent Physical Therapy (helped some) and bought a back brace to wear during golf. However, my back continued to hurt with pain running down my legs. In December of 2020 I fell while playing kickball with my grandchildren -- trying to score!!! I felt tremendous pain even while wearing the back brace. I went to see my Physical Therapist the next week and she put me into orbit with the slightest touch on my back. My Internist immediately scheduled both an MRI and an appointment with a top spine surgeon at MUSC, Dr. Bruce Frankel. His PA met with me after the MRI, took my history, and said that I had to meet with Dr. Frankel himself as there were some irregularities that they did not like. This happened the next day; Dr. Frankel informed me that I had a compression fracture of the L4 vertebrae. This fracture, plus some slightly elevated proteins noted a couple of months prior by my Internist Dr. John McGough, raised the prospect of a plasmacytoma, or plasma tumor of the L4. Dr. Frankel scheduled surgery in 2 weeks, while also informing me that this tumor is usually a forerunner of Multiple Myeloma and that he would call in the MUSC specialist for this cancer, Dr. Hamza Hashmi. 

Spinal fusion surgery in April of 2021 was successful and the plasmacytoma was confirmed. Dr. Hashmi informed me that I did not have full blown MM, as my plasma cells were below the 10% figure. The “Multiple” term refers to more than  single a source of plasma cells; though there was another spot which glowed in the PT/CAT scan, it was nothing very large. I had 25 sessions of radiation therapy in May-June of 2021 under the guide of Dr. Bradley Cooper, MUSC. After these sessions all seemed good as the blood work was excellent and the cancer markers reduced to normal. I was released to continue PT and having quarterly blood work and scans. We knew MM would come back, but hoped that it would be 5 years or so. My condition rapidly improved and by October, 2021 I was back tormenting my friends on the golf course. In December, 2021 Debby and I went to Paris and took a Viking River Cruise down the Seine to Normandy and back to  celebrate both our 45th wedding anniversary the year before as well as my 70th birthday — both events delayed for 1 year by Covid.

Quarterly scans and blood work all looked good; though a couple of markers were tending up rather than down, they were not that concerning to the doctor. The 1st week of April, 2022 we went on a 15 day Viking Ocean cruise: flying from Atlanta to Madrid, then after a couple of days on to Barcelona via a Bullet Train, boarding our ship there and cruising the western Mediterranean through the Straits of Gibraltar and then on to Portugal, France, England, Belgium, and finally Norway. Despite one day of rough weather in the Atlantic we had a great and memorable time. We came home and continued on with life as usual.

In June and again in September of 2022 I had more blood tests and scans. This last time the results were not as positive, though the markers were not that much higher, save for a kappa/lamda figure and Monoclonal protein spike. Dr. Hashmi told me that I was positive for Multiple Myeloma; he suspected it was hiding in my  bone marrow & bones — that he wanted to attack it before it grew worse. We both agreed and he explained that I would have chemotherapy for about 12 weeks — both daily at home and weekly outpatient at the hospital. At the end of these treatments he would talk to us about an Autologous Stem Cell/Bone Marrow transplant. In a few weeks we began that schedule and are just now completing 9 weeks.  I have 3 more to go and will be finished on February 1st.

Several people have asked why I did not go somewhere for a second opinion. Two basic reasons:

    a. I have a sister who is a retired Hematologist/Oncologist and though she no longer practices she is familiar with Multiple Myeloma and knows the basic protocols. Her statement, "This is not an exotic cancer and a good H/O can handle this." When I told her that Dr. Hashmi specialized in MM and does clinical trials, etc., then she confirmed that I was in the right place. 

    b. Dr. Hashmi's credentials and ability to focus on MM made going elsewhere non-essential. I would not travel elsewhere to be treated when I have a top flight cancer hospital, the Hollings Cancer Center of MUSC, 12 miles downtown — it is ranked in the top 10% of all cancer treatment facilities in the US. Through the Leukemia and Lymphoma Society information is available online as to the latest treatments. What I am receiving is the standard of care for MM in its early stages. I also have a childhood friend, whose wife has been dealing with MM for 2 years. They travel every six months to the University of Arkansas Medical Center in Little Rock which has a noted MM treatment facility. My treatment protocol is the same as hers, which again reinforced our decision.

At this stage chemotherapy consists of 4 main drugs: weekly injections of Velcade & Darzalex Pro, a weekly oral intake of Dexamethasone and a daily regimen of Revlimid — 14 days on and then 7 days off. There are also the usual supportive medications to reduce side effects: Oyster Calcium pills (and a shot of Xgeva monthly;) Acyclovir — to prevent shingles; and various others such as Benadryl, Tylenol, etc. Though this sounds like a lot, it is really mild compared to what other cancers require. Every Wednesday I spend 3-4 hours @ MUSC Hollings Cancer Center having blood drawn and analyzed and getting my shots. BTW, MUSC has the best technicians, nurses and staff that I have ever experienced. All their patients are hurting at one level or another, and they are nothing but kind, calm, caring and informative. 

On January 11th, 2023 I had full blood work and met with Dr. Hashmi and Dr. James Davis, head Pharmacist @ Hollings Cancer Center. After this final round of chemo I will be having an incredible number of tests to ensure my body is up to this. Then in mid-February the doctors will harvest my own stem cells, freeze them, and then reintroduce them in mid-March; this is called an “Autologous Stem Cell/Bone Marrow Transplant.” If all goes well the next year will be spent rebuilding bone marrow and my immune system. I must receive  again all the vaccinations I have ever been given — even measles and mumps!

The greatest danger at this stage with MM is not as much dying from the disease as it is dying from a secondary infection. I wear a KN 95 mask everywhere I go, as does Debby. Dr. Hashmi warned her not to go out and catch something and the infect me! In fact, at this stage the most challenging aspect of treatment is not so much the chemo, though that is no fun, but rather being quarantined from people. (Fatigue is a close second!)  We miss our church and SS Class — the ministers and members at Westminster Presbyterian have been wonderfully supportive — but we are confined at this point to watching worship online every Sunday.  It is not the same, but it is better than nothing. 

Side effects are very mild compared to other cancer treatments: fatigue, neuropathy on the bottom of my feet, occasional stumbling, blotches on my skin from the injections in the abdomen area, and the usual “chemo gut” — I’ll just leave that right there. My body has really tolerated these drugs very well.

So, that's the medical picture, or almost all of it. On November 9th Debby had a total shoulder replacement while I had my second round of chemotherapy. I dropped her off at an adjoining hospital and picked her up 2 days later; due to Covid and/or my being immunocompromised I could not go stay with her.  She has done amazingly well and is almost through with her PT. She is quite the trooper, I must say. 

From what I have gathered my case is fairly normal, especially considering we caught it very early. The moral of this part of the narrative: play kickball with your grandchildren and if you break your back you will be blessed.