1937 / Class of '97 / Type: lambda light chain / Tandem transplant / dex, Aredia, and interferon maintenance / Died 8-2002
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.
I am a physician who knew about Multiple Myeloma from my training but nothing
about current treatment. I opted for immediate aggressive treatment. I wanted to
do every thing to avoid pathological fractures (OK so far). My oncologist urged
me to get consultations, but she also said that most would start treatment in
the same way for the aggressive disease I had. I insisted on starting treatment,
and promised her I would get consultations after the first round. The Monday I
was to be admitted to the local hospital for VAD, she informed me that I was to
go to ACRC, that she had arranged for them to see me that Wed. The surgeon, who
was a classmate of mine in med school, agreed with her that this was the best
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 August 1997 for high dose Melphalan followed by stem cell
rescue. Counts recovered quickly (again gcsf was used). Just before leaving,
pneumonia was diagnosed. I was given Zithromax and sent home. I returned to work
as soon as I got home. Pneumonia cleared. Cleared to play golf again, but not
carrying my own bag.
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
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
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.