NHL/CLL - Lymphomas Message Board

syrbil · 08-18-2001, 10:31 PM

Hi,

In April of 1999, I was diagnosed with NHL/CLL and have been on a "watch and wait" protocol since that time. My oncologist monitors my blood work up every two months and it is staying about the same. The absolute lymph percentage has gradually increased from a 3.7 to a fluctuating number of 4 to 6.1, which he says is consistent with this disease. My CT Scans (3 different times) have been staying about the same. He talks of a new clinical trial about to take place that uses PT100 to attack the immature lymphocytes that cloan and tell them to die off. Since my blood work up and CT Scans have been relatively the same each time and only a slight increase in my lymph percentage in the last two years, my husband is concerned about me signing up for a clinical trial. He feels that we should let a "sleeping dog lie" as they say. Since my diagnoses was considered indolent, not wanting to work, lazy, I am beginning to wonder about this myself.
Is there anyone else out there with this disease that "sounds" similar, as I know that we are all different and no two people have exactly the same disease. I would welcome some feedback on this. Thank you, syrbil

caddy · 08-19-2001, 09:45 AM

Hi,
My husband has t-cell NHL. He's had it since 98. Went in remission. It came back in Feb. 2001. Had chemo again the tumors shrunk. We are now going to join a trial with our son's stem cells. It is not like any of the SCT out there. It is done as an outpatient. From what I have learned Lymphoma for most is not cureable. It can keep on going in remission but eventurely you will die. If you get excepted into a trial I believe you shoud take it. Go with you heart. Don't let anyone tell you what to do. With Joe's trial we feel it is his best shot of beating this thing. Good luck and let me know what you decide.

syrbil · 08-19-2001, 09:55 AM

Dear Caddy,

Thanks for your input. I do hope that all goes well for your husband. I have often read that the clinical trials will only take those that have gone through all other options. I am so new at thinking about clinical trials that I have really not done enough research to know too much about them, though. As I said in my message, each of us is so individual that none of us have the exact same disease "content" except in name only. I am still trying to get more information on the PT100 that my oncologist talks about. Thanks again,syrbil

JanieB · 08-19-2001, 10:14 AM

Dear Caddy, Read your answer about which you quote that for most people with Lymphoma it is not curable, This depends entirely on which type of Lymphoma you have, My hubby had high grade B cell, which when caught early enough is said to be 99% curable....I do not disagree with clinical trials, we live in London, England and are not as advanced with our treatments as you....I have also just lost my mother to lung cancer..
I also dont think you should tell people that with most lymphomas you are likely to die without a clinical trial....My hubby didnt have a clinical trial he had the normal, surgery and then chemo....Its really up to the individual....My uncles lymphoma has laid dormant for 15 years now....

caddy · 08-19-2001, 05:26 PM

Hi all,
Sorry you miss understood me. I didn't mean for it to sound that without a clinical trial you wood die from lymphoma. Joe's doctor told him that this will be his best shot at being cured. I know that all people are different. Some people go years without it coming back. Everyone has to do whats best for them.

Elaine