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28 Year Survivor Non-Hodgkins Lymphoma

ironcanbeer
Posts: 1
Joined: Feb 2012

Today is 28 years I beat the disease it also marks 5 year brain tumor survivor. I just want to know if anyone else is a childhood survivor of this disease. I was first diagnosed in 1985 as a 13 year old kid. I would just like to share my post cancer issues due to the kimo and radiation I endured during my 24 months of intense kimo.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1018
Joined: May 2012

Ironcanbeer,

First, congratulations on your medical success, and a great screen name.  I got HL as an adult (53 at the time), but have a close friend who had stage 3 HL as a 15 year old in high school.  It would have been around 1985 at that time, and he was treated with MOPP chemo, which is not used very often any more in the US. 

He described how horrible it was. He said that back then his bone marrow extraction was done through his lower leg somehow, but I forget the exact details (bone biopsys are almost always done from the top of the hip nowadays).   I do not think he had radiation.  He also mentioned that he was a 180 pound linebacker at the beginning, and was under 100 pounds at the end.  He lost all appetite, and said that he would eat nothing but pot pie for months.  I lost all appetite myself, and would eat nothing but french fries and liquid nutrition drinks.  Food abnormalities are pretty common with MOPP and ABVD, from what I understand. I lost about 15% of bodyweight.

He also mewntioned that he was one of three kids in his high school that came down with lymphoma that same year. He added that he was the only one to survive to graduation.   He is still well today, 30 years later.

I have been in complete remission for 4 years now myself.    I know that many of the regulars here had childhood lymphoma, and I'm sure they will describe their treatment history for you.

Best of luck to you,

max

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

Max,

  Don't tell me you traded the Ford in on the kitty. John 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1018
Joined: May 2012

John,

The dealer said the "cat" was a "Cougar," -- an older model at that !  I have been had !  Undecided         (I still have the '70 LTD.)

max

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

When I first started posting back in 2010 there was a lady on here named BLUEROSE that at the time was a 20 plus year survivor. She no longer post but maybe she gets on every so often and you can have a little conversation with her. I have been in remission since Oct.2010 from FNHL.Stage 4 John

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Hi ironcanbeer!

I am a 24 yr survivor of Hodgkins' Lymphoma and have many Long Term Effects from the chemo and radiation.  One major effect was breast cancer 6 yrs ago from the radiation.  Anyway, I see an Adult Long Term Specialist at Memorial Sloan Kettering Cancer Center.  I happen to live about 3 hrs away.  Do you live in the states?  Here is a link to find a clinic near you:http://www.ped-onc.org/treatment/surclinics.html    Just noticed it lists clinics in Canada too. 

My specialist insures I'm getting the proper testing for issues due to treatments that effect out heart, lungs, skin, thyroid, you name it.  This does not mean I get scans all the time.  We most definetly don't need any added radiation!  They follow a comprehensive guide of Survivorship Guidelines :http://www.survivorshipguidelines.org/

All the best to you!

Cathy

UncleBuddy
Posts: 529
Joined: Aug 2013

My brother had NHL in 2000 and was cancer free until 2011. He developed rectal cancer, first it was stage 2a but recently advanced to stage 4 because it has spread to the lungs and liver. I am assuming by all your posts that the chemo used for NHL can cause cancer in later years. I think they used CHOPS on him, but I'm not sure. I do know the chemo caused his heart to become slightly enlarged.

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