San Diego, CA; firstname.lastname@example.org
1959 / Class of '03 / Type: IgG Lambda / Chemo / Updated: 11/07
I have lived in San Diego since I was two years old. I was diagnosed when I was 44 years old in August 2003. I had no idea what was wrong except that I could not breathe. That was caused by a very low hemoglobin and also pneumonia in my lungs. Less than two days in the hospital, and they could find nothing wrong with me. They did give me Tylenol and gave me a prescription for biaxin. In a month, the hematologist gave me a list of five diseases that I could have had and said he did not think it could possibly be multiple myeloma because of my age and because my bones were rock hard. The bone marrow biopsy hurt six weeks later. My bone marrow was as close to 100 percent packed with myeloma cells as is possible.
I was put on Dexamethasone alone and my urine protein went from 10,200 mg/24 hours to 300 mg/24 hours in about 5 weeks. They did another bone marrow biopsy at Scripps Green in San Diego where I was planning to have a transplant, but the marrow still had 95 percent myeloma cells but it only took up 50 percent of the intermedullary space.
I was going back and forth from Dr. Berenson, who just barely favored a transplant for me at that time, to Scripps that does a lot of transplant. Next Dr. Berenson put me on Dexamethasone at 4 days 10 days off with Biaxin at 1000 mg per day and Zometa once a month. My numbers went down for about 3 months and then went back up. Then they put me on 100 mg of thalidomide per day and Dexamethasone at the same amount.
During all of this time, I had adopted strict organic diet and at nothing but healthy things. Like Marla Barnett, I had ingested tons of NutraSweet. And, unfortunately, even now, I am still doing it. But the Thal/Dex regime put me in remission in about 5 months but made me completely lose touch with reality.
I was put in the mental hospital for a week where they wanted to give me electroconvulsive therapy. I walked out as soon as they put me in the unlocked ward as that was frightening. I was put on Lexapro and Zyprexa, a massive amount of the latter which made me a zombie.
For almost a year I did nothing for treatment, but like I said, I returned to drinking NutraSweet. Then I went to dex, biaxin, and Zometa. This kept my numbers under control for a year. Then I went to Cytoxan, Dex, and Velcade. This worked for about 5 months, and I required two transfusions, one before I started and one near the end.
I was taken off of this and in another five months I started Velcade, Dex, and Doxil. In both of these treatments I was given a minimal dose of Velcade.. 1.0 mg per meter squared Body Surface Area, although with the first treatment I asked to increase it. The Doxil was given at 5 mg per meters squared Body surface, on the same days as the Velcade instead of all at once on one day. This treatment has not worked either and I required 8 blood transfusions. The costs, although I have insurance now, have been enormous.
Now I am thalidomide at 50 mg every other day and Medrol at 40 mg every other day, but I already know it is not working. My body is just not working anymore, quite honestly, and my mind is just about gone. I had thought this was because of all the anemia and the drugs, but now I think it is the result of either using Splenda or NutraSweet. I cannot remember simple things nor do simple math. This after I had just completely a certificate in finance at UCSD Extension Studies and had taken several accounting classes.
I hope this serves as a warning to others. This is not a political statement, but if you need an artificial sweetener, it is probably best to use Stevia or Xylitol, although the latter can cause terrible diarrhea. I have never had any physical problems such as peripheral neuropathy or broken bones. Right now my ears are pounding as usual, a sign of permanent anemia.
I have been on the ACOR mailing list most of the time except one time when I talked about a certain company that produces a certain brand of resveratrol. I cannot say that resveratrol nor curcumin, both at very large amounts, ever did anything for my myeloma counts, but curcumin probably affected my platelet counts, the same way as Velcade.
I have a 14 year old son, and I never really thought I would make it that long. It is hard to accept the end of your life.
I have had too many treatments for a stem cell transplant, and really the only things left are Revlimid and some combination such as Velcade and KOS-953 which has a name now. The trial is for those who have failed both Velcade and Revlimid.
I am sorry if this is not an inspiring story. I really do believe that, at least to some extent, it does matter what you eat, but I am no longer able to do this anymore. But, if you can, avoid NutraSweet and Splenda.
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