Winter Haven, FL;
1952 / Class of '06 / Type: IgA Lambda light chain / VAD, Velcade, SCT / Updated: 8/08
My name is Cheryl Hasson and my husband, John, was diagnosed with MM IgA Lambda light chain, Stage IIIb in October 2006. John was born in 1952 in East Liverpool, Ohio, a small town less than 50 miles west of the Pittsburgh steel mills. In 1965 he moved with his parents and brother to Avon Park, FL. This also is a small town and is in the middle of the citrus belt of Florida. He has dealt with bronchitis for most of his life, but other than that, has basically been healthy.
He is a carpenter by trade and worked in manufactured housing for about 20 years. He started his own business in February of 2005 doing trim-outs on these manufactured homes and remodeling on site-built homes. In December of 2005 he started experiencing pain in his left should blade. He figured he had just pulled a muscle and didn't think much about it. After a month of the pain, I convinced him to get it checked out and have a complete physical at the same time. The doctor he went to could not find any reason for the pain, but was alarmed at the blood work which showed a very elevated creatinin level of 3.8 (normal is 1.0). The doctor thought John's high blood pressure may be the cause and put him on medication. Over the next eight months he kept having blood work done, had a kidney biopsy, added a second blood pressure medicine, and added medication for acid reflux. At times the pain was excruciating. Finally, his doctor pulled all the tests results together to suspect John may have MM. He sent us to Roberto Fraile of Bond Clinic in Winter Haven and Dr. Fraile did an MRI and a bone marrow biopsy. Those tests confirmed the diagnosis. At last we knew the enemy we were facing. John's plasma cells made up more than 20% of the cells in his marrow. Normally this should be less than 5%. His M-protein level was in excess of 6800 and he also had lesions throughout his body. We give God the glory for protecting John until he was diagnosed. He could very easily have broken a bone and been incapacitated or killed because his bones were so badly compromised.
Four days after the diagnosis, John started receiving the VAD chemotherapy. He would receive this once a month for four to six months. Then testing would be done in anticipation of doing a tandem autologous stem cell transplant. Three days after his first treatment, he started to hiccup. One round lasted for over three hours! That went away after a couple of days. After the next treatment, he experienced muscle spasms in his left side and stomach. The spasms would hit suddenly and were worse than any pain he felt from the cancer. The really bad pain lasted for four days and then eased up after getting some medication. However, John tried to use as little of the pain medication as he could because it caused constipation which as bad, if not worse at times, then the other pain. Along with the pain has been the constant fatigue. Some days John would feel good and do too much. Then the next day he was really wiped out. During the course of receiving the VAD, Dr. Fraile would sometimes give John Zometa to help strengthen the bones. Other times he would receive Procrit to offset the anemia. It's hard to say if the Procrit really helped. Since October, John's RBC has only been in the normal range one time. One worry we haven't had was the WBC. It has always been good, so there have been no infections and only a couple of colds (which John gets every winter, anyway).
After the second chemo treatment in November, John did a 24 hour urine test and the results indicated the M-protein had dropped to under 1300. We were all excited. The excitement was short lived. Six weeks later, tests showed the M-protein had spiked back up to over 2200. By this time, we had made our first visit with Dr. Melissa Alsina of the H. Lee Moffitt Cancer Center in Tampa, Florida, who will be in charge of the SCT when the time comes. After Dr. Fraile conferred with Dr. Alsina, it was decided to take John off the VAD and start him on Velcade. This treatment involved a cycle of two treatments a week for two weeks then a week off. He did this for three cycles. After the first cycle, the M-protein had dropped to 479. Also after the first cycle John was thrown another twist by coming down with shingles. Again, a very painful event. However, it was caught early and Dr. Fraile put John on Valtrex for a week. This threw his chemo cycle off for a week, but it could have been much worse. After the third cycle, the M-protein was down to 75! Dr. Fraile pronounced John's cancer in remission. John finally had a break from doctor visits and actually got to go fishing in the Florida Keys for a week.
Again, the joy was short lived. In May, 2007, John had testing at Moffitt in preparation for the SCT. That was done on May 2 and 9. On May 16 he received a call saying the M-protein was back up over 1000. We're praying this may be a fluke and John's doing another test to verify the results. Unfortunately, John has been experiencing more pain, so he was disappointed, but not surprised at the result.
A meeting with Dr. Alsina had previously been schedule for May 24 and at that time we will find out the next step. I'm going to push for the transplant and discourage doing the chemotherapy anymore. It's only a stop gap measure and since he has had relapses so soon after the treatments, I feel the SCT is John's best hope.
March, 2008: It has been nine months since I updated my husband's story. At this point, we are thanking God for sustaining us and improving John's quality of life.
John had an autologous stem cell transplant in July, 2007. It started out in June with John giving himself a shot of Neupogen every day for five days to increase his stem cells. It worked well and enough cells were collected after one harvest. Praise the Lord. On July 22 he went into Moffitt and began three days of high-dose Melphalan, and a trial drug called Topotekin, to kill off most of his cells. Then on July 27 (Day 0) he received his stem cells and began watching the numbers to see when he would engraft. During the next 10 days he endured painful mucositis (mouth sores that kept him from eating) even though he was given a new drug called Palifirmin, to minimize this. This made it necessary to receive IV feedings. He also received more Neupogen. Amazingly, on Day 10, he had engrafted and was doing well enough to allow him to go home. Normally, he would have had to stay close to the hospital for a week or two, but because he would have round the clock care giving, he was allowed to come home. Over the next three weeks he took it easy and recovered his strength. By September he was back to work. In January of 2008 his 24 hour urine test indicated his M-protein had reduced to 54. While we would prefer 0, this is okay for now. He still fights fatigue, but is usually able to work through it and makes sure he relaxes on the weekends.
John is supposed to be getting an infusion of Zometa once a month to help strengthen his bones. However, this was causing his creatinine level to rise, so that was not given in February. He has seen another doctor at Bond Clinic to determine if there is something else he can be given, or if he has to receive the Zometa and try to counteract the creatinine level.
He will be having another bone survey done the end of April. We're hoping to see a significant improvement in the amount of lesions previously seen.
Except for the couple of weeks when his mouth was so sore, John has kept a wonderful attitude. We have also been blessed with financial aid from dear friends and a great network of prayer warriors. Because of this, John's business kept going while he was ill and we can both look forward to the births of our first two grandchildren in June and July of 2008.
Aug, 2008: The past five months have flown by but include only good news. John's appointment in April at Moffitt indicated his M-protein is still down and his bones are beginning the slow process of healing. The lesions are definitely smaller than seen in previous bone surveys. John saw the specialist who did a bone density scan and was given the good news that his bones are strong enough not to need any additional medication. Praise the Lord!! He is scheduled to see his doctor at Moffitt on Aug 18. We're expecting the news to continue to be good.
The final good news was the birth of a granddaughter in June and a grandson in July. The blessings are flowing everywhere.
I have heard from a couple of survivors and I am happy to correspond with them. I find the common threads among all the survivors and their families is faith and hope. I know that is why John has done so well.
Blessings to everyone who reads our story.
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