1938 / Class of '98 / Type: IgA / Mini-allo cure / Updated: 5/02
This is my story, which I call "My Good Luck", about my fight with the beast called Multiple Myeloma.
In 1997 I began having a sharp pain in my right hip, which being I was at the age of 59, thought that it was just the old time form of Arthritis. In Feb 1998 I began noticing a lot of blood in my urine. Being a helicopter pilot, I called my flight surgeon. He seemed a bit alarmed and made an appointment right away with an Urologist. The Urologist took a blood sample and suggested that he use the scope and take a look to see where the blood was coming from. He found a lot of calcium in my bladder, which he removed for testing. Also, the results from the blood test came back saying I had Multiple Myeloma, and just to make sure, he had a bone marrow biopsy done which really confirmed the existence of Multiple Myeloma. I was then put in contact with ONC.
Let me tell you about this doctor. First of all, she was a very poor excuse. I do not think she even new what Myeloma was. She ordered a bunch of x-rays and started me on chemo. A couple weeks later I went back to see her. She looked at the x-rays and said there were only a couple suspicious spots, but otherwise the x-rays looked great. She also said my blood work looked great too. Remember the great x-rays and great blood for later on in my story. She gave me another dose of chemo and I was to come back in two weeks.
By this time the pain in my hip had gotten quite severe, and it was difficult for my to get up, sit down and walk. I went back and she started reading the blood work which was supposed to have been taken a week before. When I told her that was the same report from after my first visit she was flabbergasted and left the room and did not come back. Well anyway, my wife had found another ONC for me to see for a second opinion.
Getting this second opinion was my life saving measure. Luckily, Dr. John Rainey took time that afternoon to see me. We brought all of my records and x-rays with us. Dr. Rainey look at the records and x-rays and diagnosed my MM to a "T". He said I had IgA stage III MM, and after looking at the x-rays said I looked like I had been shot by a shotgun, as I had hole in every bone in my body. Now these x-rays were the same ones that were seen by the first ONC who said there were only a couple suspicious spots. She could not read x-rays either. Dr. Rainey said he could not treat me the way I needed treatment here in Lafayette and I needed to go to the ACRC in Little Rock Arkansas or I would be dead in about 6 mo. Immediately his Physicians Assistant got on the telephone to Little Rock and made me an appointment. If anyone needs a great ONC in Lafayette, Louisiana, then Dr. Rainey is the one to see. During my times at home he has treated me and done everything that the doctors in Little Rock wanted him to do.
Shortly I received an appointment from the ACRC with a bundle of information I needed, and even names and numbers of hotels to stay at in Little Rock that offered great rates for MM patients to include a free breakfast and transportation back and forth to the ACRC. My wife and I got in our car and drove on up to the ACRC In Little Rock Arkansas. The first day we were met by a lovely little lady by the name of Sally. And do I mean little: about 4-foot tall, but with a wealth of knowledge. She explained about all of the tests that I was to take over the next 4 or 5 days. Some of these tests were a 2 or 3 hour MRI, complete x-ray of my entire body, echocardiogram, bone scan, complete blood workup, testing for everything, bone marrow biopsy, pulmonary exam and a few other things I can not remember. At that time they were working on a vaccine so they took a bunch of my platelets hopefully to make me a vaccine. On the last day I saw a great MM doctor by the name of Dr. Semma Singhal. She looked at all of my reports. She said she would try DEX to get all of my high counts down so I could get an Auto Transplant. She put me on a pulsed DEX program of 40 MG DEX for 4 days and off 4 days for about 3-1/2 months. Plus a bunch of other drugs such as Aredia, Acyclovir and others. We then returned home.
During the time I was on the DEX a lot of weird things happened. First of all the pain in my hip got very bad and it took me about an hour to get up in the morning and into a wheel chair, as I could not walk. Also could only sleep 10 or 15 minutes per night and muscle loss especially in my left arm which looked like skin stretched over bone. At diagnose I weighed about 205 lbs and I went down to 160 lbs. I was also 5'10" tall and dropped to 5' 7" tall. Plus, the worst thing is DEX makes you very mean. Every week I went in to Dr. Rainey's office and brought a 24 hour urine sample. They took a sample of that and two or three vials of blood and rushed it to the lab at the ACRC. Each week a nurse calls Tanya at the ACRC called me with the results and each week my counts would drop. My IgA started out at 9000 with high counts in my serum and urine. Finally my serum and urine counts dropped to zero and IgA to the normal level of 115 to 425. During this time, because of the tremendous pain in my hip, Dr. Rainey want me to have some radiation. But Dr. Singhal said no, as she said when the MM gets better so the pain will lessen, and she was right.
About 3-1/2 months of being at home I returned to the ACRC to have my stem cells collected for my auto transplant. They put me on 24 Chemo to get me in a state of neutropenia. After 4 days I never did drop below 1, but they took my stem cells anyway. I then went back home as they had to wait one month before the could give me anymore chemo of Melphalan for my auto transplant. I also found out during this time that I was also Chromosome-13 deficient, which they said was a sign of an aggressive disease. After one month I returned to the ACRC to start my Auto Transplant. I entered the hospital on a Sunday night and they hooked me up to a saline drip as they want me to be well hydrated when they gave me the Melphalan. Oh, I also had a Hickman catheter in my chest. The next day, they hooked me up to 200 mg of Melphalan , which took about 20 min to drip out. The next day, 24 hours later they gave me back the stem cells that they had collected. From then on, every morning a 4 AM they took a blood sample and by 7 AM I had the results. Each day the White Blood count, Platelet count and Hemo count would drop. At one time, they woke me in middle of the night and took an x-ray, as they thought I might have a bit of Pneumonia. They gave me antibiotics to combat this. Also, my platelets dropped below 20, so they gave me one unit of platelets. Finally, my WBC reached zero and in a couple day started back up along with my HMG and Platelets. I was in the hospital for 21 days before I was released to go home. Things that happened were things like a very sore throat, shedding of skin in my mouth, nausea. About the only thing I could eat was canned fruit without getting very sick.
When we got home I noticed the shower was bad from no care for about a month so I proceeded to clean it. Well, the next day I had a high fever and ended up in the hospital, under Dr. Rainey's care for 4 days. I did not comply with my order to stay away from molds, etc. In Dec, I returned to the ACRC and this time was under the care of the same doctor that took care of me while I was in the hospital. Dr. J. Mehta. He said I was in remission, however he had come up with a new protocol called a micro allo transplant. He wanted to have my brothers checked to see if they were a 6x6 HLA match. He explained that this procedure used donor cells. The theory is that when ever these cells, which become your new immune and blood system, see any of the old immune cells of MM, they are foreign to them and they will attack and kill them. This was also used for older people as they did not use as much Melphalan and no radiation. Kits were then sent to my brothers, all three of them. To my luck my younger brother was a 6x6 HLA match. He came down to Little Rock from Seattle and they collected stem cells from him. I went back in April but they could not get a clear nasal wash and also saw a possible problem in my lungs, so they put off the micro allo transplant for a month. I went back up in May and still a bad nasal wash, but saw a pulmonary doctor and he said my lungs were okay. This delayed me until the last of June to start the Micro-Allo transplant.
The last day of June I enter the hospital to start my micro-allo transplant. This time they gave me only 100 MG of Melphalan and likewise no radiation. This time, I had no sore throat, only food tasted bad, so back on the canned fruit. After two weeks they released me from the hospital but I had to stay in an apartment, as they wanted me close for check-ups every day. They started me out with 1/4 of the stem cells, and then on day 21 gave me 1/4 more and again of day 42 1/4 more. I was doing so well that after being up there 70 days, Dr. Badros, who was now my doctor released me to come home and was to return on day 100 for the last of the stem cell infusion. I went back and they gave me the last of the donated stem cells. From there I returned home
For a while they had me come back every 3 months for testing. Each time they could find no MM. A one point they said I had tumors all over my back but they had disappeared killed by the donor cells. As of today and my last check last Nov. they can find no MM anywhere. I go again in June and then I would have to go only yearly for a while anyway.
I do hope that the information that I have provided may be of some help to those out there with MM, showing that there is a cure for this beast. If any one has any questions I can possible answer email me at firstname.lastname@example.org or call me at 337-856-9909. I will even take a collect call.
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