My name is John and I have survived Amyloidosis. I have been "disease free" for over a year- so it is time to tell my story. It all started in September of 2007. I had no symptoms at all - other than getting on the upward side of 50 years old. I had been retired from teaching high school science for two years. This gave me time to start an exercise program and I went through a total heart evaluation prior to starting it. No problems were found with my heart so I was feeling pretty good.
My daughter had just bought a small house in a nearby town and I was working on fixing it up for her to move in to during the third week of September. On one hot day, I did not drink enough water and, apparently, became dehydrated. That evening, I experienced tremendous pain in my abdomen and I started thinking about appendicitis. It got so bad that I went to the E. R. at the local hospital. The started running tests and I ended up staying there for a few days while they did more tests. CAT scans showed enlarged lymph nodes and an enlarged spleen. They finally let me go home on Saturday and told me to return on Monday for surgery to remove a lymph node under my armpit to biopsy it.
As I was trying to go to sleep the night I was released, I noticed that I could not catch my breath. It was like diving under water and not being able to get back to the surface. I went back to the hospital and the E.R. doctor told me that I had congestive heart failure. That was a shock because my heart had been checked out as OK before I started my exercise program. After a dose of Lasik, I was sent home and then I felt fine.
When I arrived for my surgery on Monday, they would not touch me because they had found out about my heart problem. They admitted me and transferred me to a heart center 90 miles away.
While there, the heart specialists did a full catheterization, found no problems at all, and sent me home. The cardiologist said that the hospital had put so much IV fluid in me during my stay that it just backed up around my heart-I had no other symptoms of heart failure. They were the ones who first told me that I might have Lymphoma, though, and it made for a long ride home that day after hearing that.
I finally had the lymph node under my armpit removed the next week and waited for the results. I found out later that the local hospital's pathologist was the hero for me. I had heard that he was very sharp, but I didn't realize how sharp. He noticed that the lymph node felt unusually hard and, immediately, suspected Amyloidosis. He then sent it to Mayo in Rochester and referred me to an Oncologist from Peoria, Illinois to wait for the results.
I had thought that I just had some type of Lymphoma and didn't feel too bad, because I had heard that it was very treatable. I was shocked when the doctor said that it was follicular B-cell lymphoma and Amyloidosis. She didn't tell me much about it except that she felt that if we made the lymphoma go away, the Amyloidosis would go away also. She seemed very confident that I would be OK - no prognostications about five year survival rates or anything like that.
I started looking around on the internet and what I found about Amyloidosis scared the heck out of me. The first thing you read on the internet is that it is a cancer and that there is no known cure. It was then that I found this support group site. I emailed Muriel and she was so supportive and upbeat - that helped me a lot. The support of the moderators and members in this group is so important because there is so much scary (and sometimes-wrong) information about the disease out there.
I was treated with 6 rounds of chemo. by the doctors at Illinois Cancer Care out of Peoria, Illinois. They used Vinchristine, Rituxin, and Prednisone through the IV with more Prednisone in tables form after each treatment. For those of you, who just have primary Amyloidosis; remember that they were treating my Lymphoma first. They assumed I would need a SCT after the chemo was over.
At this point, I would like to remind everyone that I was lucky to find a "local" Oncologist who would confer with Mayo on treatment. It is still best to be treated at Mayo or Boston University Medical Center if you can.
I was also lucky because, although the combination of Lymphoma and Amyloidosis is very rare, the amyloids were mostly in my lymph nodes and spleen and we caught it before they really started to affect my kidneys, liver, or heart.
The chemo. sessions went well for me (no nausea), but the week after each treatment was very painful-my legs and abdomen were especially painful. I was, however, able to continue with normal activities and even coached a season of Girls Basketball as the local high school.
After the six chemo treatment, they did bone-marrow biopsies (two of them-Ouch) and all kinds of urine and blood tests to confirm that the amyloids were gone from my system. They then contacted Mayo to determine the next step. I thought I was going to have a SCT for sure to make sure nothing came back, but they said to just monitor me. I ended up with some Neuropathy in my feet and some very minor kidney problems from the disease or the chemo or both, but I still feel lucky.
I have been extensively tested every three months since my last chemo in March of 08 and I still have low light chains and no Lymphoma. Though it all, the support of the people and moderators on this site have been extremely helpful to me. It is also important to have support of your friend and family-both in moral support and prayer support. You have to have faith in God and faith in your friends and a positive attitude to beat this disease.
Oh yeah, have good doctors helps also.
I have no illusions about the disease staying away forever, but if it does ever come back, I know that this site with be here to support and encourage me again.
John Personette (jpersone@hotmail.com)
Primary Amyloidosis and Follicular B-Cell Lymphoma 9/07
Chemo- Vinchristine, Rituxin, Prednisone 10/08-3/09