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Any survivors of follicular lymphoma out there

Richsterr
Posts: 36
Joined: Aug 2010

Hi
Any survivors of follicular lymphoma and for how long? I was diagnosed last april and have since been in remission. Do the doctors know if they can retreat the disease if it relapses? Real life experiences mean more than what statics say.

Thanks Richard

hilde451's picture
hilde451
Posts: 223
Joined: Oct 2009

My name is Hilde, I was diagnosed in 04 with Non-Hodgkins Lymphoma in 04, At wihich time I had Radiation and surgery. I went into remission for almost 5 years, one week away.
I had to do chemo and more surgery in 09 and was diagnosed again with Follicular Non-Hodgkins Lymphoma stage 4. It was in my Bone marrow.
But up to know I have been in remission. I go to tomorrow to find out my results from my ct scan. So hope you will get hope from this. There are survivors for this. People do survive. I just live one day at a time. Hope you have a wonderful Christmas.

JOesterwind's picture
JOesterwind
Posts: 3
Joined: Dec 2010

Hi, my name is Jim. I was diagnosed in May of this year. I also have it in my bone marrow. I have five boys between the ages of one and eight. I also take it one day at a time. I don't take life for granted. My relationship with the Lord Jesus is the only thing that brought me through the six months of chemo. It's been painful and difficult, but there's hope.

Jim

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

Hi Hilde,
Please tell us what your scan results are when you find out. I will be thinking good positive thoughts for you and keeping you in my prayers. Fingers are crossed!
Love...Sue (FNHL-2-3A-6/10)

Richsterr
Posts: 36
Joined: Aug 2010

Sue
I have had eight chemos so far. Most of my tumors are gone. Tomorrow Thursday I will find out the results of my scan. Will let you know. Since I have been off the chemo I feel great. How are you doing?"

Rich

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

Hi Rich,
Thank you for asking. I'm doing ok..not too bad other than I'm extremely tired and find it difficult to do alot of things I was doing before chemo. I have one round left on Dec 14th and then go for a CT scan the following week. I hope to know before Christmas if I'm in remission. Good luck tomorrow on your scan results and I'll be keeping good positive thoughts that all will be well. Take care...Sue (FNHL-2-3A-6/10)

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Rich,
Glad you feel so great after chemo. I have been 2 months out and still working on getting back to 100%. Getting there a day at a time.I guess we are all different. John(FNHL-1-4A-5/10)

Richsterr
Posts: 36
Joined: Aug 2010

John
Yes I said I am feeling alot better than when I was in chemo but also I am a month out and not feeling 100 per cent either. I guess it takes time. I read about my disease and the more I read the more confused I have become. The oncologist at the Moffit Center in Tampa told me things different from my oncologist. Why cant I get a definite answer about anything? Does anybody really know?

Richard

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Rich,
Exactly what was the difference in what the 2 Drs. told you? I can say it is best to stay off the websites. Now that will really confuse you. Let us know. John(FNHL-1-4A-5/10)

Richsterr
Posts: 36
Joined: Aug 2010

John
Thanks for answering me. My oncologist says I should get a stem cell transplant while the oncologist at the Moffitt center it is not necessary now. My oncologist said that when I relapse it will be hard to go into remission. The oncologist at the Moffitt center said to wait and see what happens. Which do I believe? This is a never ending puzzle to me.

Richard

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Rich,
I am sure others on here have heard several things as well. Heres what I understand. When we go into remission the first time no one knows how long it will last. It could last months or years or even forever. What we have is not considered cureable right now,but treatable. They can't entirely eradicate it as of yet because it is so slow growing and some of the cells are not even entirely formed. Some of those cells may flair back up again into the cancer cells. Nobody can predict when that may happen or really 100% that it will,but the chances are it will at some time. If it does flair up again there are so many options that can be taken to try and put it back in remission. My understanding is that today the 2nd remission will probably not last as long and it will probably come back again. When it does there are other options as well. Remember this is today and with the strides they say they are making with lymphoma by the time that comes to be there may be even greater medicines for what we have. I hope this makes sense. John 9FNHL-1-4A-5/10)

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

I wa diagnosed with Stage 3 FNHL in Jan 09. After Chop I was cancer free in June 09 and have been ever since. I also went to Moffit and I think you should trust them. I can't remembe the specialist there in lymphoma because of blonde, chemo , old brain but he told me my tumors were not big enough to consider a transplant. He ssid Rituxin gave me an 80% of it not returning for 7 to 9 years. My oncologist worked there and he sent me there for a second opinion. I am feeling well and thank God for each day that I can be around people and go to work and be normal.

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