Acute Myelogenous Leukemia

Humberto Martinez's Story

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My name is Humberto Martinez. I'm 33 years old. I was born in El Salvador and came to New York in 1982.

I was admitted to Beth Israel Medical Center on September 7, 1995, had a BMB (bone marrow biopsy) the next day, September 8, and was diagnosed with Acute Myelogenous Leukemia (AML).

I have a very small family: Wife, 2 Daughters (10 and 11 years old), Grandmother, Mother, 2 Uncles, 2 brothers, and 1 Cousin. It came as a big shock to all of them (well, including me!) when I called them and told them that the cold I seemed to have been having trouble getting rid of, had turned into Leukemia.

When I went in to the hospital my PLT (platelet) count was 9000 and my HGB (hemoglobin) was 6.5. I had my first PLT and PRBC (packed red blood cell) transfusion ever in life the same day I was admitted to the hospital (I have lost the count since then).

After I was stabilized I was given the first round of chemo (vincristine and Idarubicin) for 7 days. I tolerated it very well. I only had some problems with nausea and my hair fell out. Twelve days after the chemo ended the Dr. did another BMB (bone marrow biopsy) and the marrow still showed 70% blasts.

Another round of chemo was started for 5 days. This is where all my problems started. Nausea was very bad, I had constant diarrhea. About a week after the chemo I developed a fungal infection of my blood called "Candida". I was put on Ampho-B for 21 Days. The infusion of Ampho-B was very difficult. Always half way through it I would get the chills, which most of the time lasted about 1 to 1 1/2 hours, and then I would spike a fever. I was very neutropenic, one night I spiked an 105 F fever and I got really scared. Nurses put me on a cooling blanket and were able to control the fever.

Due to the high fever, I lost some of my vision. I don't remember the name of the condition, but I remember the Ophthalmologist telling me that the loss of vision was due to hemorrhages in the back of my eyes. This was due to the fever in combination with the low platelet count I had at the time. He said it wasn't permanent damage-- that when my platelet count went back up again it was going to clear up.

Five weeks later I still couldn't see. It wasn't total blindness. I had some peripheral vision, but I couldn't read and I couldn't watch TV. When I talked to people I couldn't focus on their faces. It was very bad because I was on Isolation, without being able to leave the room and I was pretty much deprived of any distraction by not being able to watch TV or read. Luckily I could talk and hear, so I would listen to music or have long talks with family and friends. Because I was getting daily infusions of Ampho-B, I was also getting infused with a lot of fluids before and after the Ampho-B infusion. This was done to protect my kidneys since Ampho-B is very hard on them. Well one day the doctors on their daily round, when they listened to my lungs, heard a noise and had me take a chest X-ray. The x-ray showed a little spot on my right lung. They told me they thought pneumonia was developing even thought I wasn't having any symptoms.

Drs. from Infectious Diseases came to see me. They were the ones who had recommended the Ampho-B treatment. They told me that I didn't have pneumonia. It was only excess fluid, due to the fact I was getting so much liquid with the Ampho-B infusion. The Drs. on the floor and the Infectious Disease MDs. went back and forth as to what to do. Finally the Drs. on the floor decided to treat me with Backtrim for Pneumonia.

Well, I turned out to be highly allergic to Backtrim, which is a sulfa based drug. I developed one of the worst cases of allergic reaction anyone could have. It is called "Steven's Johnson Syndrome". After only one dose of Backtrim I started developing a rash on my arms. A nurse was about to give me a second dose of Backtrim, when I told her about the rash. I was given Benadryl but that didn't work at all. The next day the rash had spread all over my body. On the third day I was transferred to ICU. I was vomiting blood and I also had bloody diarrhea. My throat was shut tight! I couldn't even drink water because I would choke with it. By this time the rash was turning into blisters and doctors told me my esophagus was sloughing. Because of the fungal infection, the catheter had been removed, and now with blisters all over my body it was really hard for the nurses to find my veins for IVs (intravenous infusions).. The next two days were "watch and wait". A tube was inserted through my nose down to my stomach to get me food (lipids I think). By the fifth day 95% of my body was covered with blisters including the soles of my feet. I was in a lot of pain and the itching was just horrible.

On October 29, 1995 I was transferred to New York Hospital - The Cornell Medical Center-- to the Burn Unit Center. I looked like I'd been in a fire and survived. Upon my arrival at the hospital I was immediately brought to the area they call the "tanks". The tank is this large metallic bathtub with hoses all around. I remember the names of the nurses who treated me at the tank: Frank and Eric. Up until this day it still amazes me when I remember how quickly Eric found veins to infuse me stuff. I was heavily sedated and Frank started peeling off my skin with something that looked like razor blades. I don't remember very much because after about 10 minutes I passed out. I woke up four days later, still with a lot of pain, but my skin looked a lot better. About eight days after my arrival at the hospital I started walking. Doctors were very impressed with my progress. Three weeks after my arrival at the hospital, I was going home. I was still visually impaired, neutropenic and leukemic, but the fungal infection in my blood had cleared up. Three days later an infection on my finger spread throughout my whole arm and I was back in the hospital for 10 days.

I was admitted to Memorial Sloan-Kettering on 11/28/95 for a third round of chemo. By the time I went in to the hospital, my vision had improved a lot, but I developed RMSA on my eyes. Another infection, it started with pain on my eyelids and around my eyes, but by the time I got in the hospital my whole face hurt very badly. My third round of chemo started the next day with high doses of Ara-c because I wanted to get out by Christmas. I went home Christmas Eve and returned Christmas day with a perirectal abscess infection. After the third round of chemo I still didn't go into remission-- my AML was very refractory, over 90% blasts.

At this point it seemed that my only chance was a BMT (bone marrow transplant). After the HLA (Human Leukocyte Antigen system) type testing on my two brothers, it turned out that one of them was a perfect match (6/6). After the third round of chemo and after the infection cleared up, I went home for about 2 weeks before I went for my transplant. After more tests were performed on my brother and me, the date was set to go back to the hospital on 02/05/96 for the transplant. Since I wasn't in remission I asked the doctor my chances of success. He told me, because of the fact that I wasn't in remission, my chances were only 10-20% percent of success.

I talked to my family I told them what my wishes were in case I didn't make it, and I reinforced a promise I had made them early when I was diagnosed. As long as I had an ounce of strength in my body, I promised them I would fight until the end. I didn't want to be pessimistic, but I had to be realistic that the thing might not work. There were a lot of tears and hugs but we stood together.

I had a conventional allogeneic BMT on 02/13/96. By the time I had my BMT I was again in bad shape, due to the TBI (total body irradiation) and 2 days of cytoxan that came first. I have read that some people tolerate the TBI pretty well. Well, not in my case! After the third day of TBI, I was pretty much wasted and still had 1 day to go, plus the 2 days of cytoxan.

The day I got the BMT I was still in a double room and most of my family was with me including my donor. As a matter of fact, my brother told me when they hung the bag with his marrow. "Listen brother, " he said pointing to the bag - "you're getting the best stuff!" I told him there wasn't any doubt in my mind.

About a week later I developed problems with all my major organs (Heart, Lungs, Liver and Kidneys), but doctors were able to treat the problems quickly. About two weeks later I developed GVH (graft versus host disease) which I was praying for. One doctor one time told me GVH is like the "ying yang" of BMT, your chances of going in total remission are greatly increased if you developed gvh. Fortunately in my case it was a mild case.

I was finally discharged 4/25/96 at day +72. My BMB (bone marrow biopsy) and counts looked very good. I went back to the hospital 3 days later with CMV (cytomegalovirus), I was treated and released after two weeks.

Since my original discharge after the transplant, I've been back to the hospital a total of 5 times. Twice for CMV and three times with severe cases of diarrhea. The stays keep getting shorter. I was always making deals with the doctors to go home sooner, because I could give myself a lot of the medication. My house looks like a mini clinic! I have everything: pumps, IVs, Syringes, Saline Solution, etc., etc.

I kept getting stronger. BMB (bone marrow biopsies) after 3 and 6 months show 100% donor cells and I'm feeling just great. GVH returned-- it is still a mild case and I'm taking cyclosporine and it seems that it is doing its job.

In August my wife, my daughters and myself went to Puerto Rico for vacation. I came back to work October 21, joined bmt-talk (an online internet support mailing list) on October 22, and life is just swell.

I've been called many things by my family, doctors, nurses and friends! Among the things I've been called are: Survivor, Fighter, Strong, Persistent, Courageous, Inspirational. I'm not shy to admit it -- They're right!! I'm every single thing they call me. I know I have a little bit of everything and believe me when I tell you that I used every single bit of those qualities during my ordeal. From the moment I was diagnosed, I promised myself and my family that I was going to beat this disease. It hasn't been easy, but there was never a doubt in my mind I was going to make it. I often told my family, "don't expect me to be making jokes and laughing all the time." Many times I felt downright depressed, but I always told them, "just think that in my mind there's always a thought lurking in there all the time and that was: Beat this disease."

I also know I didn't do this thing by myself. There wasn't only a team of doctors working with me; it was a much bigger team that included God, Doctors, nurses and my family, and in my book they are my greatest heroes. I also think that mental attitude played a big role in my treatment. I was always very positive.

Now I look forward to the future with renewed strength. I look forward to seeing my daughters graduating from college and getting married ( many, many years from now!!). I look forward volunteering my spare time to help others in any way I can. But most of all I look forward to tomorrow, because even if tomorrow is only a fraction of what it was today, I know I'll be great day.

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Copyright © 1997 Humberto Martinez
This Home Page was created by WebEdit,Friday, October 31, 1997
Most recent revision Friday, October 31, 1997