1937 / Class of 1997 / Type: Lambda light-chain / Tandem transplant; Various chemotherapies / Died Aug, 2002
About 1992 or '93 I started to feel very tired doing things I had always done. I tolerated this without complaint. In November 1995 I had an ENT exam and told the physician my voice was changing. Nobody could hear the change, not my wife or children, but I could. He examined my vocal cords and larynx and saw nothing. In March 1996 I went to an endocrinologist because of the tiredness, the voice change, and some small weight gain. He found a lump on my thyroid, which turned out not to be on the thyroid at all, but on the larynx. The tumor was removed in June 1996 and was a plasmacytoma.
A workup for multiple Myeloma after the tumor diagnosis was negative for multiple Myeloma. I did have a little less that 10% plasma cells in the marrow, but alone that was not felt to be enough to make the diagnosis. A consultation at Sloan-Kettering was optimistic that I probably had only a solitary plasmacytoma, that I probably didn't have and wouldn't get multiple Myeloma, but that I should be monitored every three months (and I think less aggressively than my oncologist would have chosen herself, but she followed the advice of those who had trained her).
The MM diagnosis was made in 2/97, at age 59. There were many bone lesions
that had not been present 6 months before. Since there was so much bone
destruction from 6/96 (none evident) to 2/97.
Golf was forbidden. I had three rounds of VAD five weeks apart, each round consisting of four days of IV VA, Dex those four days then four days off, then four on, four off, and four more on. Every round of chemo, including the stem cell procedures, were accompanied by antibiotic coverage. I missed one week of work when I went to ACRC for workup. I returned home on the second day of VAD, went to work the third and never missed another day of work until I returned to ACRC for stem cell collection. Clearly all the VAD was done outpatient, my work was sedentary physically but required good intellectual functioning and concentration.
In June 1997 I returned to ACRC for the stem cell collection. Cytoxan was
used for mobilization and it was given inpatient so I was hospitalized for three
days. Then GCSF. I have stem cells stored that are sufficient for four more
transplants (first day's collection was divided into four, second into two).
Returned to ACRC in November for second high dose chemo and PBSC rescue. Again no problems and we returned home quickly. However return to work was aborted each time I tried because I felt ill and tired. No reason was found on workup. In January 1998 I had some pain on breathing, and my onc. sent me to the hospital for a chest x-ray. Pneumonia was diagnosed. Onc., pulmonologist, and infectious disease doc agreed that given the history, IV antibiotics were required, inpatient. On the fifth day of treatment, like a miracle, I suddenly felt all better. However med team insisted on 10 days in hospital because a resistant staph had grown in sputum culture. Nobody believed this was the cause of the pneumonia but nobody would take a chance on shorter treatment because if it were I'd be in trouble.
After discharge I went right back to work. (My physicians weren't always in agreement with my doing this as quickly as I did, but they didn't forbid it so the patient made the choice.)
Then maintenance treatment (or no treatment) had to be decided. One of my physicians at ACRC was now in New York, much more convenient for me. I consulted with him. I rejected CDEP quarterly because I was so wiped out by the second HD chemo. We agreed on Dex 40 mg. four days each month and interferon. (Also Aredia 90 mg. every two weeks, vitamins, calcium, and water.) I tolerated the interferon pretty well, I thought, except I found more mistakes in my work, and couldn't trust my memory or my ability to do the intellectual work as well as I was used to. Dex wasn't as easy as it had been, there was more of a crash after stopping; that didn't prevent me working but the problems were putting pressure on me and making me anxious, work wasn't as much fun as it had been.
I retired from the solo private of psychiatry at the end of July, 1998. In October, I went to Scotland with a friend to play golf. We were there nine days. We played eight golf courses (British Open courses in Scotland) on seven of those days. We had bad weather only one day, and my friend kept saying during the three hours of cold driving rain that stung your face "This is real golf, this is what I came for!" I was thinking "What am I doing here? A cancer patient who had pneumonia twice in the last year?" But I kept playing also, and loved it.
Because I could not keep Interferon refrigerated on the trip, I discontinued it. I have had difficulty restarting it and am struggling to get back to the original dose. My onc. does not want me to stop trying. If I'd experienced this when I first started, I would have given it up then.
A word about lab work. From the beginning there have been no problems. Bence-Jones protein was elevated in 2/98 at diagnosis, it was undetectable after second VAD and has remained so. CBCs except during HD chemo have been OK.; B2M and CRP have not been elevated. Tumor genetics show chromosome 13 deletion, which is the only "bad prognostic sign" (if we ignore that the disease itself is cancer!). PET scan was clear earlier this year and will be repeated soon. BMB has been deferred in light of negative PET, and the last BMB in Feb. 98 was completely negative (PCLI couldn't be done because there were no plasma cells). Lab work is done when Aredia infusions are gotten, CBC only most of the time, more at others. 24 hour urine is done every two months.
I am enjoying life. I am President of the Westchester County Medical Society. At the time of diagnosis the nominating committee had just chosen me as President-elect. I notified them of the diagnosis and the treatment plan which meant I wouldn't be much of a participant during my year as President-elect. They came back to me saying "you're our nominee, we think you're going to make it, and we look forward to your year as President." Such confidence is wonderful to have, as are all the prayers and good wishes.
There have been a few disappointments, friends who dropped away without a word. I guess they couldn't tolerate the idea that I was ill, and couldn't speak to me. But life goes on without those few, enriched by many new friends from the cancer community, and I am grateful.
16 April 2002
In general life has been good since I last wrote. Still no pain, no fractures, no disability except for less sharp thinking and tiredness, sometimes easily overcome, sometimes not. My wife will tell a much less rosy story, but she is not writing and I admit I tend to forget the bad stuff after it's over, and even minimize it when I'm going through it. I'll update the Myeloma events and try to keep updating as long as I am able.
In April 2000 MRI showed serious tumor involvement of C3 (third cervical) vertebra. A cat scan of the vertebra showed it to be intact despite the MRI appearance. Discussion was begun as to whether it should be radiated after having had 5000 RAD to the neck after the plasmacytoma. C3 was out of the field of the earlier radiation, but there was still concern.
Meanwhile urine protein increased in May 2000. Dr. Jagannath noticed that it was albumin, not Bence-Jones. I had a consult with a Nephrologist in June and it was decided that the problem was being caused by Pamidronate, which was then decreased to monthly from bi-weekly. The albumin increase stopped and regressed to some extent, though never back to normal. However Bence-Jones protein was present in the urine, and generalized disease was inferred, which would justify chemo- therapy rather than localized radiation.
Interferon was stopped, and Thalidomide started. I was up to 700 mg./day with no apparent result when, on July 19, I started DT-PACE (Dexamethasone 40 mg./day for four days, Thalidomide 100 mg./day, cis-platin, adriamycin, Cytoxan, and etopiside). After the second round of the same drugs five weeks later, I was again in complete remission. The third round did not start until October 2000 since I did not want to be carrying chemo or be less able to enjoy my self at the second wedding we had in 2000. One daughter married in May, the other in September. Both are doing very well, and we are delighted with them and their husbands. For Elisabeth, see cfy.org for the company she founded.
Again I had a complete remission. Various maintenance regimens were tried including thalidomide alone, BLTD (biaxin, low dose (100 mg.) thalidomide, dex 40 mg. 4 days every four weeks, and CarTCell, up to four vials twice a day. Again there was recurrence, and no way to know which if any of the maintenance regimens helped retard recurrence.
On August 8, 2001, the day we were to leave for an Alaska cruise, I instead went to St. Vincent's Comprehensive Cancer Center to start another round of D-PACE, this time without thalidomide. Results were less than hoped, and ominously, plasma cells began showing up in peripheral blood.
On September 28, I began the PS-341 trial. I began on a Friday rather than a Monday or Tuesday because the disease was moving so rapidly that days seemed to count. The first cycle (each cycle three weeks) showed marked lowering of markers, the second ended back where I started, the third showed rapid progression. It was then decided to go back to high dose Melphalan with stem cell rescue (third time). I was blood and platelet dependent, getting one, the other or both for a few weeks.
Melphalan was given December 18 and 19, stem cells on the 20th. This time it was an inpatient procedure since my hematologic condition required close watching and frequent support. This was a miserable enough experience that even I admit it. I believe that I got over-hydrated (12 lb. weight gain, when I should have been losing weight by calorie intake). This led to pulmonary congestion and respiratory distress syndrome. I remember a number of people working around me at the time, but didn't feel too uncomfortable or in danger (contrary to what others saw and judged). I was very wiped out, and eating was a real chore because it took only a few bites for me to feel full and I had to force myself to eat. Very slowly, and very painful for others to watch. I went home weak as a kitten, on TPU (parenteral nutrition) and oxygen. I stopped them both after two days, and made a rapid recovery.
This time I did not get a remission, although the disease severity dropped markedly. CBC showed no plasma cells, white counts returned to normal a day earlier than expected, but platelets were slow recovering and didn't make it past the 80 thousands. B-J protein decreased to 100 mg./24 hrs. Two weeks later it was 400 mg., two weeks later it was 1200 mg. and one week later 2500 mg.
This is where we are today. I have qualified for the Revimid study at Dana-Farber which will be starting in a few weeks, St. Vincent's expects to start about a month later. But I can't wait. Last Friday at 8:20 PM I began Cytoxan, Doxil and Dex which I finished Tuesday. Results are not in, but we are hoping that this regimen will give me a chance to get to the Revimid trial able to participate.
Through all of this, life goes on as usual. Family has been wonderful, I'm closer to my two younger sisters and their families than I have ever been, all friends have been very helpful and supportive, even the one friend I had in mind who disappeared as of my last note has returned. Despite the dire- ness of my circumstances, I remain optimistic, and am busy preparing a sound system for the den we are now renovating, walking with retired friends, and playing golf when I have the chance (walking, pulling my cart).
Howard F. Stock, M.D.
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