White Plains, NY; RKlibrary@Earthlink.net.
1935 / Class of '93 / Type: IgG / Tandem transplant, Interferon / Last Update:
I grew up in Brooklyn in a low not quite middle class neighborhood. Excellent
health before diagnosis. Had a cornea transplant, but no major surgery or
illnesses, tended to get bronchitis, even as a child. Always exercised; at age
40 started jogging and completed three marathons. Was still jogging at
diagnosis. Only "clue" may have been an upper respiratory infection in
July of the year I was diagnosed. It was strange to get bronchitis in July.
Local hem-onc is at the Scarsdale Medical Group--Mark Fialk. Seeing Dr.
Jagganath as super doc now at St. Vincent's.
Diagnosed in Nov. 1993 during a regular physical; was referred to Little Rock
in Dec. 1993 for consultation and/or treatment. Bone marrow plasma cells of
about 21% (one report said 25-30%), IgG monoclonal protein of 3.6g%, serum M
2.5. B2M 1.3. No Bence-Jones, no bone lesions. I think I had the following
treatment, including two autologous transplants. VAD times 4. High dose
cyclophosphamide plus GM-CSF, EDAP plus GM-CSF, Melphalan. Medication included
Cipro (other drugs to protect my stomach, etc.)
Stem cells were "excellent" There are still enough stored for a
third transplant (although I don't think I'd do one). Bone marrow was extracted
and stored as well. First transplant was done outpatient--the usual minor
problems--fever, infection, edema, etc. Second transplant was in hospital. I
think Cytoxan was given for both transplants. The second transplant was more
difficult--slower recovery; infections, thrush. In both cases, I was home in a
bit less than one month. I would say full treatment and recovery took about a
year and a half. However, I worked a good deal of the time during the treatment,
especially during the VAD. Had some problems with the catheters--infections,
The decision was made not to do total body radiation, for which I am
thankful. We discussed it, and agreed it might not be necessary. Clearly the
treatment was heavy duty; many would have opted to wait. I have no regrets.
Fatigue is still fairly constant; my early retirement was based directly on the
mm. My job was too stressful, and working in an environment with literally
hundreds of students in the building daily probably wouldn't have been good for
my immune system.
Still on Interferon (Feb. '99 will be 4 years--that will be evaluated). On
Aredia once monthly. I feel lucky.
September 2000: In Feb. 98, Dr. Jagganath and I agreed to stop the interferon. I felt
much better--more energy, less feeling of ennui, etc. There have been no
substantive changes in my numbers since then. IGG is in the normal range.
Serum M varies from 0.4 to 0.7. The only treatment I'm now on is Aredia.
The major shock occurred this April when after a routine mammography I was
asked to have more film taken. Results of the mammographies,
examinations, and biopsies were a double mastectomy. There is evidently
no connection with the Myeloma. Nevertheless, it has been a very
difficult time. Because of the heavy chemo I had had during the
transplants, consultations with Dr. Jagganath, Dr. Klein at St Vincent's, the
tumor board at St. Vincent's, and Dr. Fialk, my local oncologist, the decision
was made to go for 4 sessions of Taxol. I just finished the third. More side
effects than I had expected--neuropathy, and muscle and bone pain.
Nevertheless, there's only one treatment to go, and I'm hoping for a cure.
There appears to be no relationship to the MM.