Non-hodgkin's Lymphoma Support Group

I was right where you are some time ago, and I understand the needing to know while still not wanting to know. I was lucky to have 2 great doctors that were very open and honest with me. They assured me that NHL is very treatable in this day and age. Just 10 years ago, the statistics were not good at all. But they have come very far. The treatments and maintenance drugs are very encouraging.
I learned right away that as I went in search for these answers my self, I found alot of negativity surrounding the topic and I learned to not focus on that. It can scare the daylights right out of you. You have to stay positive, you have to help your son stay positive and that is honestly the best tool in this fight.
I read so many bad things that I feared were coming my way and in the end I worried for nothing because I never encountered some of the things others did. I tell everyone that I can that I meet that are going thru this same battle. Keep looking ahead, stay positive, pray alot and don't stop laughing. I followed that same advise and I have now been in remission since Aug. 2007 and plan on staying there for good now!
This site is a wonderful place for people like us to help and encourage each other, but I have learned that no 2 people react the same at all with the same cancer and the same treatments.
It is very sad to hear that you have hesitations about your doctor. Anyone going thru this difficult illness deserves to have a doctor that is a stepping stone for you on your journey. There are some doctors out there that chose not to disclose all the worst statistics out there, in hopes to help you stay positive and that could be your doctor's avenue too. My thoughts and prayers are with you.

I need to tell you that i was at stage 4 and had relapsed 3 times.. too much details to go into at this time.. but for 6 years now i have been free of any treatment and remain that way today..
You need to have trust in your dr.. and if you do not , seek out another.. I had a team of dr.s and i was looked after so well. mind you it took almost a year for a diagnosis.. harrington 10 is so right , pray . laugh and surround yourself with supportive people..

Hi! I've only just been diagnosed w/ NHL myself, and I'm a pre-med student, so I bug the crap out of my oncologists!! I like to know details, never mind the blahblahblah crap they say to everyone else, so I expect a clear and concise answer in return to the questions I ask.

My radiologist/oncologist told me the survival rates out there were before the PET scan days, and he believes those considered Stage 1 or 2 back then may have been in a later stage, and that it may be possible for Stage 1 or 2 to be curable (or, as he so graciously mentioned, a really long remission in between recurrences). Both of my oncologists agreed that people with NHL can live long lives, and that the remissions are on average, about 8 years between occurrences. The statistics are from older studies, and may or may not be determinant in your case (if it's your son, and he's still an adolescent or young adult, like me at freshly 28, the odds given do not apply to us, since the data stems from older patients and not for our particular age groups).

Also, the course of treatment needs to be accounted for, and the fact that numbers have no meaning because each and every person is different and handles treatment (as well as cancer) differently. Plus, I agree that a positive state of mind will have a better prognosis than a negative one!! Especially if your son is younger, he'll pick up on the vibes from you, since my daughter knows something is wrong with me even though I've yet to tell her (she's still too young in my eyes to know anything). I believe in mind over matter, and that we shouldn't put much faith into statistical data since it's only a numbers game. Being happy is the most important thing - you can't get past any diagnosis of any kind with a grim outlook!!

Not sure if this will help, but I was disgnosed stage 1 NHL 11 years ago. I have been clear for 10.5 years now. I was giving a 99.9% chance of 5 year survival when I was diagnosed.


C.

Get someone you can trust, and not just someone who says what you want to hear. The doctor I had in Indianapolis, where I was first diagnosed, was in a "wait and see" mode. When I moved here to Omaha I found experts on lymphoma, by chance, and found that I was actually fighting grade 3 and needed to be more aggressive to battle it. My prognosis is good, and I hope your son's is. I will pray for you.
But find someone you can believe.

Hi Chickie,
Sorry to hear about your son.
When I was diagnosed with Burkitts Lymphoma I was told not to go on the internet looking at survival rates and all the stories on there, as each person is very different in treatment.
The first thing I did when I got home was search for how long I had to live ! I spent weeks trawling through sites finding some awful information and some encouraging information.
In the end the best thing that happened was me getting into hospital away from a computer and getting on with my treatment. Seeing other patients being treated and the successes, and the positive comments from the doctors and ward staff.
My doctor and radiotherapist both told me early on that 3 years previous, a cure was not available. But now the treatment is very intense and about 4 months long, but that should be the end of it.
I recall thinking they would tell me anything, but at the end of the treatment, my senior Radiotherapist called me in for a checkup, and I recall the gaze he gave me and said 'You will live to a good age now'. Nervously I laughed, and he continued to gaze at me and said I would.
It was this moment I knew that I was fortunate and that the C word was no longer an immediate death sentence.
During my time in hospital I must admit I was very positive and I think that is a major part of the battle. I know my words may be just a crumb of comfort to others, but peoples health prior, ages, stages of condition etc can all play a part in recovery so one persons health/reaction can not be judged for anothers.
Good luck to you, but please treat some of the information on the web with caution.

Rgds

Alex

www.alex-beatingcancer.blogspot.com

i was given 5 year s, but had only started treatment in may. have stage 4, , i also have 3 other cancers. and all four are tearing me up. all the bones to top right rib cage destroyed by the lung cancer.

massive nerve damage to right side and right arm. the pain is really hard to take, but, the pills help.