Non-Hodgkin's Lymphoma - Lymphomas Message Board

ppeach · 05-24-2004, 11:21 PM

Hello everybody. I had Hodgkins disease when I was 14 -- had 6 months of chemotherapy (MOPP) and 1 month of radiation treatments and have been in remission since this month (I am now 28 years old). I recently had 2 nodes removed from my neck and axilla, and the preliminary path report has come back as non-Hodgkin's lymphoma. We don't have the final path back yet, so I don't know what exactly I am dealing with, but my physician was first talking about autologous (self donated) stem cell transplant, and now for some reason, he is talking about allogenic (related donor) transplant. I am certainly scared to death about all this. Chemo I can handle....I've been through that before, but this is something new and different. Does ANYBODY have any experience with this or any good stories. I feel a constant cloud over my head and I am so scared of dying from this disease. The worst part is that I have been feeling so good lately with absolutely no symptoms....so this is such a shock to me. I have never been so scared in all my life of what the future holds for me. When I had Hodgkins disease 14 years ago...I was a kid and mom and dad took care of everything, and now I am an adult with a mortgage and bills to pay and don't know how I am going to do this. Can anybody provide me with any hope or encouragement?? I am just so scared.

Marimac · 05-25-2004, 05:50 AM

Quote:

Originally Posted by ppeach

Hello everybody. I had Hodgkins disease when I was 14 -- had 6 months of chemotherapy (MOPP) and 1 month of radiation treatments and have been in remission since this month (I am now 28 years old). I recently had 2 nodes removed from my neck and axilla, and the preliminary path report has come back as non-Hodgkin's lymphoma. We don't have the final path back yet, so I don't know what exactly I am dealing with, but my physician was first talking about autologous (self donated) stem cell transplant, and now for some reason, he is talking about allogenic (related donor) transplant. I am certainly scared to death about all this. Chemo I can handle....I've been through that before, but this is something new and different. Does ANYBODY have any experience with this or any good stories. I feel a constant cloud over my head and I am so scared of dying from this disease. The worst part is that I have been feeling so good lately with absolutely no symptoms....so this is such a shock to me. I have never been so scared in all my life of what the future holds for me. When I had Hodgkins disease 14 years ago...I was a kid and mom and dad took care of everything, and now I am an adult with a mortgage and bills to pay and don't know how I am going to do this. Can anybody provide me with any hope or encouragement?? I am just so scared.

I can't promise you that things won't get difficult, but there have been a lot of new less painful, less invasive treatments for lymphoma sense you last were treated. I know that the unknown is very scary. But, hopefully with the more modern treatments, the mortgage and the bills will be no more of a problem than they were before you found out about your diagnosis. It is a very good sign that you were asymptomatic, that means that maybe the disease can be treated without a lot of adverse symptoms. Good luck to you.

JenBrooke123 · 05-25-2004, 07:08 AM

Well, I am not familuar with the proceedure. But my mom Had Non-Hodgkins Lymphoma, they offered her the same treatmeant 5 years ago, but went with chemo instead. I suppose it depends on what kind of Non-Hodgkins you have, fast or slow growing..etc.. She was in remission for 5 years and then this past year she found another lump in her neck. this time she couldn't have the chemo so she had the anti-body shots for three weeks.

We will find out if it worked the middle of june sometime. As for the stem cell, that was a option for her because I guess studies show how well it works againest this type of cancer. Before she had the full path back they talked about doing it. Which finally resulted in chemo, and then this time the anti-body shots. I suppose your treatments will depend on what grade of cancer you have High or low etc.. Try not to worry too much, my mom is feeling pretty good herself and other then the lump never had any symptoms herself. Let us know how the report goes. Good luck.

nanci2539 · 05-25-2004, 08:48 AM

PPeach - first of all, it's normal to be afraid of the unknown!

I have two friends who underwent transplants. One friend who was in his 20's at the time had stem cell (I believe) and he's in his forties today. He had stage 2/3 Hodgkins.

My former boss who has CLL (a form of leukemina) had a transplant using his own marrow. He was around 55 when he had it done, he's in his 60's today.

My husband's co-worker, who has non-Hodgkins lymphoma for 14 years now, and recently (last year) had a transplant and is fine. He isn't running races but he's back to work. Dean is in his mid 50's.

So, there are success stories. I feel you should investigate the best of the best clinics - MD Anderson comes to mind (Texas); Dana Farber in Boston is another one. I personally know a doctor at Dana Farber who deals with this if you want a referral.

So, go through your stage of being afraid, that's so normal, you're talking to the person who set the tone for that! But, know there are options and I would suggest a few opinions before you make up your mind and don't be concerned in telling the doctor you have fears about this - a good doctor will understand and take his time explaining it all, not jumping from option to option! Everyone is different so it needs to be tailored to you.

And I can tell you, the transplant is not a cake walk, but it's not horrible either. Dean was on his computer in his room within a week! There are side effects you need to deal with like mouth sores; tiredness; compromised immune systems but the actual transplant is not as horrible as you may think.

Keep us posted!

nyxin · 05-25-2004, 09:48 AM

i don't know if this will help, but a doctor told me that if someone was going to get cancer, lymphoma would be the one most easily treated. the rate of remission is very very high. i will be thinking of you. god bless.