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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: 3522
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: 2413
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: 3522
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: 2413
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: 373
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: 1019
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.

mozza127
Posts: 9
Joined: Mar 2015

coming up to 30 years august,any one want to dicuss chemo and radium late side eefeccts and damage. thanks Ian 

Butterfli7's picture
Butterfli7
Posts: 10
Joined: Jul 2015

I am new to this site and would love to hear of side effects people are having from radiation to the chest and neck due to Hodgkins  .  Mine are neck fibrosis, had heart attack and bypass surgery in 2014, and also have restrictive lung disease.   I replied with someone else who was asking about risk of breast cancer and gave more details about everything.  I don't know if you can find that comment but I would be glad to exchange lessons learned in being a cancer survivor.  It has been 28 years for me now.

 

abcpaws's picture
abcpaws
Posts: 1
Joined: Jun 2019

I am nearing my 20 years of being cured. I am thankful that I have not had any other forms of cancer. I was 23 years old when diagnosed. My tumor was quite large behind my sternum. My treatment protocol was chemo and radiation. I am now experiencing more serious issues related to treatment. I just joined this CNS and wanted to see if other's were having issues related to treatments.

I have always had shortness of breath from radiation to chest, causing my lungs to not expand fully or normally. But, this past week, I have experienced rapid heart rate- like well over 100 beats per minute while just sitting and watching TV. On beta blocker, low dose and it has brought down the heart rate thankfully. I was just put on medical administrative leave from a job I loved after working about a month. Turns out that it was just too physical and I couldn't keep up with demands. I did all the tasks put before me, but ended up drenched in sweat and beyond exhausted. I am now seeking a desk job that is less intense. I am 43 years old now and to be denied my job has been a hard blow to my self esteem. I never really thought my cancer 20 years would be back to threaten myself again. And yet, now I am being tested for the late effects of chemo and radiation to chest. I feel angry and disappointed that in a way I have been defeated, when I have always won. Which makes me feel awful, when so many do not succeed. I have always struggled with life since treatment, but I was only 23 years old then. I thought I had finally found the right job to grow old in and put in the time for retirement. Sad and scared as I approach tests to see how extensive the damage to my lungs and heart are now in from treatments.

I wish you all the very best. I am blessed to be cured. I just didn't see this rearing it's head 20 years out.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3522
Joined: May 2012

I'm sorry about your issues at your young age, Paws.

Was your chemo MOPP, ABVD, or something different ?   Most lymphoma combos contain Adriamycin, which can cause symptoms similiar to congestive heart failure ten or more years after use ends.  This is tested for with an "ejection fraction" utrasound of the heart.  If you received Bleomycin, it can cause lung fibrosis, but the onset is usually within a year or less of treatment.

With a wide assortment of treatments, it is commonly impossible for doctors to later say with complete certainty exactly what caused the problems later. Often, they just say "it might have been this or this, or likely it was this other thing."

I have lung fibrosis, but the oncologist and my pulmonologist cannot say for certain what caused it.  I also had an ejection fraction ultrasound for shortness of breath, but it was negative (no heart damage).  Be aware that the result numbers for ejection fraction are not what they seem.  For instance, the best score possible, with a perfect heart is between 65% or 70%.  I was told initially by the tech that I had 'about a 65%', and thought I was a goner, but she then explained that 65% was 'excellent, close to perfect.'

Cathyp, above on this same thread, is extremely knowledgable in late side effects, and you might want to Private Message her.

max

NHL1991
Posts: 1
Joined: Jul 2019

I too was diagnosed with NHL in my mid-twenties. Went through chemo and radiation to the neck/chest. Fifteen years later developed peripheral neuropathy followed by autonomic neuropathy 5 years later. Although the peripheral neuropathy is a nuisance, the autonomic neuropathy has been disabling. I am no longer able to work. Although it’s not another “cancer” diagnosis, it has altered my life even more than my original diagnosis, as there is no hope for cure and no relief in sight. 

Wayne1982
Posts: 2
Joined: Jan 2020

25+ years after my last chemo treatment, I developed what my GP called Restless Legs Syndrome (RLS), and was referred to a neurologist who called it peripheral neuropathy.   It's not painful but it doesn't allow you to relax.  The nerves in my legs are buzzing 24/7.  When I first developed I didn't sleep for about 4 days.  Now it's mostly like background noise for me except when I'm trying to fall asleep.

I currently take two medications for them which don't really remediate the symptoms but make me drowsy enough to fall asleep at night.

The doctor said it could be a long term effect of chemo, but no way to be certain.   Especially after such a long time

ShadyGuy
Posts: 554
Joined: Jan 2017

My restless leg improved a lot when I avoided anything with benadryl. Benadryl was a standard part of Rituxan therapy and is found in many over the counter drugs including most all allergy  and motion sickness meds. Its generic name is Diphenhydramine.

janaes
Posts: 800
Joined: May 2016

I had hodgkins lymphoma 25 years ago. Everything was fine until 3 years ago. I was diagnosed with uterine cancer at that time. My doctor told me it was caused by the radiaton given to me when i had hodgkins lymphoma. Im all clear now. I did bracytherapy treatment for my uterine cancer but my doctor would not do external radiation for my uterine cancer because i was radiated for hodgkins lymphoma to close to where i would need to do it for uterine cancer. I didnt want to do radiation anyways because i knew the radiation itself could cause cancer. It wasnt worth the risk for me. 3 years clear now.

cinda
Posts: 63
Joined: Jul 2019

my brother had hodgkins he had surgery on a area under his arm and his spleen taken out, he was 27. He made it 27  more years. this is good news and hope for anyone who has this. I wish you a long and heathly life.

bluerose's picture
bluerose
Posts: 1112
Joined: Jul 2009

First of all congrats on your long term survivorship but probably not so happy about side effects I am guessing eh?  lol.  Me too.  I just stopped when I saw your length of survivorship and wanted to add that not only survivors of childhood cancers are reaching goals like this today either.  I was diagnosed too in 1985 but at the time I wasn't a child, I was just turning 40.  I was actually one of the first to have a stem cell autologus bone marrow transplant and I just know instinctivly that if it weren't for the stem cell part of the transplant I probably would not be sitting here writing to you right now. To the poin they decided to try the stem cell part on my NHL they had only been doing stem cell for Leukemia patients only.  Glad they gave NHL a shot cause it saved me for sure.  Anywho just a little additional hope for those who were diagnosed as adults that long ago too, we made it as well.  Now can we talk about side effects of long term survivorship?  LOL.  All the best to you, keep keeping on, you're doing great.

 

 

Wayne1982
Posts: 2
Joined: Jan 2020

Greetings.   I was diagnosed in 1982 when I was a 17 year old high school senior weeks from graduation and my 18th birthday.   I wasn't able to attend my graduation and on my 18th birthday I was presented with a consent form to sign for whatever the test was for that day, because I went from being a minor to a legal adult.

I first starting feeling bad six weeks before being diagnosed (pain, nausea, loss of appetite and severe constipation).  Was in and out of hospital 3 times getting ALL of the tests (through every opening in my body).   Nothing was found and my health steadily declined.   I was in constant pain, barely eating, not sleeping and experiencing high levels of stress and anxiety.  I thought I was going to die with no one knowing why.

Then a brown-purplish splotch appeared on my skin on the right side of my chest and grew to cover my entire right side in a few days time, so, back to the doctor we went.  This so alarmed the doctor that I was back in the hospital that evening scheduled for a biopsy the next morining.   That night I also got several shots of morphone, which gave me a brief high, then the pain and anxiety melted away for the first time in weeks and I slept through the night.

The biopsy found multiple tumors in my chest and liekly throughout my abdomen as well.   As terrible as that news was I did fill a little relief when finally diagnosed.  My state of mind was that I was going to die and now at least I knew why and we could starting really treating it.   I was referred to an oncologist and after more testing was dianosed with NHL and a chemotherapy treatment was recommended.

One of the things that really brought it home for me was after having a lymphangiogram, my oncologist showed me an X-ray of my abdomen and right there in black and white were several baseball sized tumors.  This was source of my pain, nausea, and constipation of the last few months.

The good news is I responded extremely well to chemo.   I had a hickman catheter inserted and the treatments began shortly after.  The 1st treament was pretty harsh, but I adapted.   I went through 10 cylces of chemo (I remember adramycin as the main drug) and in between a methatrexate IV, to flush out the toxins from the chemo.  My last treatment was just before Christmas 1982.  It was a good Christmas that year.   And probably just as important to my younger self, my hair did grow back.

I've never had a relapse.   And I no longer even have an oncologist, the last time I saw him, was probably around 2004, he told me that I no longer needed checkups unless my regular GP felt the circumstances warranted it.

As I've grown older though, I'm experiencing long term side effects.   Hard to know which is a side effect and what is just part of getting older.

That's my story in a nutshell.  I joined this site because I wanted to share my experience and perhaps help others who might be going through the same experience I did, by sharing and answering any questions I can.

 

ShadyGuy
Posts: 554
Joined: Jan 2017

what variety of NHL did you get at such a young age? 

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