CSN Login
Members Online: 1

You are here

Causes of Hodgkins Hodgkin Lymphoma NLPHL

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

In an attempt to solve the puzzle, I'm starting a topic so people can write in to see if there are any similar circumstance leading up to Hodgkin Lymphoma. My Lymphoma was NLPHL. Here are some of the new things I was doing in the two years prior to diagnosis:

-lap swimming several time per week in chlorine pool;

-taking generic Singular for allergies;

-taking Allegra or Claritin (and generic) for allergies;

-using allergy eye drops (allergic to cats but couldn't say no to my kids);

-taking whey protein powder (GNC wheybolic);

-eat lots of sweets;

-using lap top right on my stomach;

-taking lactaid tablets when having dairy;

 

 

givingrace's picture
givingrace
Posts: 161
Joined: Nov 2012

Hey there Jim !

*Singular

*Claritin non drowsey

*Lots of sugar

*From the time I was about 16 yrs old I was exposed to extreme trauma , adrenaline, and stress. 

*About 15 yrs ago I used to fish in a place with "cancer clusters" from the town. On our way home each time (4 times per week ) I had to drive threw the growing fields.  Crop dusters used to go over us several times.  It was really dark so I figured they weren't dumping. 

 

~GG~

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3495
Joined: May 2012

I have been exposed to a lot of chlorine, washing clothes.

max

(NLPHL, Stage III)

Anonymous user (not verified)

The challenge is to seperate facts from anecdotal evidence.

Bill_NC's picture
Bill_NC
Posts: 132
Joined: Jan 2013

NLPHL:-

-taking Allegra for allergies for years then stoppedd 2 years priot to dignose and start off taking off the counter type;

-Eat lots of sweets;

- One-A-Day multivitamin for the last 3 years.

- Vitamin D (5000 iu) 1 year prior to dignose.

ThankGodMoe's picture
ThankGodMoe
Posts: 2
Joined: Nov 2014

Yep, you read it right.... I'm a 38-year survivor. I had a baby before my Hodgkins diagnosis. Symptoms began within 6 months after her emergency c-section birth. I met other young women who also were diagnosed during pregnancy, after baby turned a year old, and one who recurred after her second baby's birth. I was not diagnosed until our daughter was 2 years old b/c everyone said that my symptoms were "all in my head," and the LUMP nestled above my left collarbone was "just a swollen lymph node.". Yeah, RIGHT?? OTHER BEFORE HODGKINS STUFF: SWEETS, CHOCOLATE, SUGAR! SMOKED EVE MENTHOL CIGARETTES IN HIGH SCHOOL B/C MY BOYFRIEND SMOKED. SMOKED HOME GROWN, NATURAL POT 1971-1973, PRETTY MUCH LIKE EVERYBODY DID BACK THEM, BUT I DIDN'T SMOKE A LOT. ALWAYS WAS ON A CRAZY DIET... RICE DIET, GRAPEFRUIT DIET, CAULIFLOWER AND DIET PEPSI WITH CYCLAMATES BACK THEN. LOTS OF PEOPLE WHO GREW UP ON THE ROAD I GREW UP ON ENDED UP WITH ONE CANCER OR ANOTHER, SOME FAMILIES HAD 2 OR 3 PEOPLE HIT WITH VARIOUS KINDS IN ONE FAMILY. I WAS THE ONLY "WINNER" IN MINE. I SWAM ON A SWIM TEAM AS A CHILD, PROBABLY AGES 7 THROUGH 13. LOTS OF CHLORINE. THEN, WHEN WE MOVED, DAD PUT IN BUILT IN POOL. SWAM EVERY SUMMER, CHLORINE. GREW UP IN SNOWY OHIO. OH, THE HOME WE BUILT AND MOVED INTO WHEN I WAS IN 7 TH GRADE WAS BUILT ONE STREET IN FRONT OF A HUGE UNDERGROUND MILITARY/ROCKET SITE. IT WAS CALLED THE NIKE SITE. EVENTUALLY WAS CLOSED SOWN AND LOCKED UP, BUT IT WAS ALWAYS "THERE." USED TO PLAY ON IT AS TWEENS. AFTER EXPERIMENTAL TREATMENTS ON CLINICAL STUDY WITH CLEVE CLINIC AND HOUSTON CANCER CTR (SPLEENECTOMY, 6 MOS. MOPP CHEMO - NO DRIPS BACK THEN. NO ANTI NAUSEA MEDS. THEN, TOTAL NODAL RADIATION (FULL BODY RADIATION) OVER 6 MONTHS. WENT THEY MENOPAUSE, AGE 22. NEVER TOOK ESTROGEN OR ANY HORMONES. STARTED DANCING, WORKING OUT, BECAME VEGETARIAN, LITTLE TO NO FAT IN DIET. BECAME FITNESS PROFESSIONAL, TAUGHT 14 FITNESS-AEROBIC DANCE CLASSES PER WEEK FOR 18 YEARS. WILL BE 60 YEARS OLD ON 2 MONTHS. HAVE NEVER RECURRED OR GOTTEN OTHER CANCERS...YET. HAVE BICUSPID HEART VALVE NOW, FROM RADIATION. ALSO BRITTLE HOMECOMING FROM ALL STEROIDS IN THE CHEMO, PLUS OSTEOPOROSIS. STILL WORK FULL TIME, BUT AM ON 4- WEEK LEAVE NOW DUE TO BONE PROBLEMS. OH, AM FULL TIME SCHOOL TEACHER NOW. FEEL FREE TO CONTACT ME. I HAVE THIS GUT FEELING THAT THEY'VE MISSED SOMETHING. WAITING FOE OTHER BOOT TO DROP. HOPE I'M WRONG! HANG TOUGH AND BE A FIREBALL YA'LL. --MOE

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3495
Joined: May 2012

Only a few of the regulars or "semi-regulars" here have your multi-decade track record of success, Moe . Thank God indeed ! One that comes to mind is Cathy, who I have not seen post in some time, but I am certain she continues to be well.

I am curious: You had MOPP and whole body radiation ? Today whole-body radiation for lymphoma is very rare.  I have a friend who got stage 3 or 4 decades ago when he was around 17, and he too did MOPP, which was the Hodgkin's combination in use before abvd was developed, and MOPP is still used at times still today.  My friend is still well to this day, incidentally. 

Your's is a success story we all long for. I am myself lymphoma-free for five years now, but have a touch of prostate cancer that I have to knock out.  There is NO known relationship between lymphoma and prostate cancer, for anyone worried that one might have "led to" the other; it did not.

I hope you continue here with your great message, Moe

max

 

Anonymous user (not verified)

the white blood cell is very, very tiny. We have quadrillions of them in our bodies. Only  one  white blood cell "bad guy" is needed  to start lymphoma. A stray gamma ray, a chemical, a virus  ( or many other events) can translocate a portion of the DNA in a single lymphoma cell turning it bad to the core. Many defects can be caused in the DNA, thus there are many types and even subtypes of lymphoma. Some may even be in the program the DNA runs and not the result of anything external At all. The body's defenses would normally recognize this bad guy and kill him. Occasionally a bad guy survives and clones himself endlessly and he never dies. Voila - lymphoma. I believe statistics, odds and dumb luck have a lot to do with getting this disease. The odds of getting it can increase if you are exposed to bad stuff - more bad guys more likely one will survive and cause lymphoma.

Our bodies are complex yet very resilient. When a bad guy white blood cell survives and goes nuts we just have to play with the cards we are dealt. The body does not live forever. Thats a known fact. Eventually the odds turn against us and dumb luck wins. Instead of worrying about what caused our lymphoma, maybe we should all ponder our navels. The results would be about the same. i just take reasonable precautions and let it go.

amanda_christy's picture
amanda_christy
Posts: 60
Joined: Aug 2014

Our bodies are such complex organisms!!! It brings me great comfort to think of my cancer, not as some invading evil, but as my body making the tiniest of mistakes with sometimes disasterous consequences. There r so many birth defects, both mental and physical, which is as a result of a microscopic error in our DNA. We are all lucky to be born well; we just happen to be more imperfect than we first realized :-)

I do understand that everyone has different emotional needs and the road to recovery is harder and longer for some. We all have to do whatever helps us get through this.....

Thanks for ur insight GKH

:-)

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3495
Joined: May 2012

Such a thoughful, well-written post, Amanda.

A little song that addresses your statement that everyone had differing needs and reactions:

https://www.youtube.com/watch?v=jBUFV2c_vcU

 

Still gittin through,

max

amanda_christy's picture
amanda_christy
Posts: 60
Joined: Aug 2014

So thoughtful. made me smile.

Never stop posting! I always read ur posts and they r so well informed and thoughtful.

hang in there Max! will defo b adding u to my prayer list :-)

Amanda

 

Anonymous user (not verified)

and so happy to hear the infusions are over. Hang in there you are doing all the right things. i know what you mean about some "friends". Same for some relatives. When I was at my worst, people said I looked "gray". Some relatives, especially the younger ones were obviously very uncomfortable around me. I deal with it. Now I look normal and am well tanned. They still are obviously not comfortable around me. I have to say I wonder what people say when I am not around. I have a wonderful wife.

 

we are all so different in the way this disease affects us. I was stage IV and had the cancer in every part of my body Including arms, legs, shoulder, bone marrow, mesentary, on my aorta etc. Still no major organ was immediately threatened. Its still there in my mesentary but not growing - at least not yet. So I have adapted to knowing it not only can but WILL come back with a vengeance. Barring a miraculous new cure, I will either die with it or from it. Its the new normal. I so hope you are cured. Otherwise we just learn to cope and savor the moment.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3495
Joined: May 2012

GKH,

There has not been a lot of discussion here about your subject of how non-patients react to people with cancer, but it is very intersting.  Without SAYING it, I could tell when I was sick that a lot of people at church and at my kids' school seemed to be thinking "How long till he dies ?"

Discomfort around cancer patients is common.I have had incidents in which friends would walk right past me in a building, not speaking, and then find a way to pull my wife aside and ask HER "How is he doing?"  I do not mind.  I guess people are not more ignorant about cancer than they are regarding most things, so it is just part of life. About 40% of Americans cannot name their US senators, so who could expect them to understsand cancer ? Amazingly, it is well documents that a percentage of people believe that many cancers are contagious

I am learning that with a relapse or secondary cancer you are really looked for every day in the local obituaries.  My current touch of prostate cancer is wholly unrelated to lymphoma and therefore is not a "relapse," but you could not tell that to even most educated people.  It is a secondary cancer, but who can understand that ?  I explain to friends who express interest that indolent grade Stage 1 prostate cancer is virtually never fatal, and would take 15 years or more to be fatal, even if never treated. The average survival time for men who are diagnosed with late, Stage IV metastatic disease is nearly five years !  But people act like I am about to fall over !

Any day that a person is well enough to pour a good cup of coffee and go out into the cool air to watch squirrels collect nuts in the oak trees is a good day, and not a time to worry.

max

amanda_christy's picture
amanda_christy
Posts: 60
Joined: Aug 2014

I get a similar reaction even though i hav early stage HL. I think its a generalized fear of ANY cancer!!! I blame some of it on the scare-mongering of the media. Its a very stigmatized condition. There r illnesses with worse outcomes that dont elicit that level of fear in others. I told my husband that i may hav to accept the fact that some ppl with never interact with me in the same way ever again. Their cross not mine.

One friend cried and more or less told me that my diagnosis had caused HER pain! Not that she was hurting for me but that she has a fear of cancer! She's in her 50s. How she could lay that on me the week of my diagnosis i will never know. I am still incredulous and deeply hurt by that and play it over and over again in my head. When i went to church after being diagnosed to explain to friends etc, she was crying at the other end of the church and telling everyone whod listen that she was convinced she was sick. She then paid for tests privately and even when they were all negative she remains convinced she has cancer or some other terminal illness. She came back from a 3week vacation to South Africa (during which time i went through IVF and PET and CT scans and drs appointments.... u name it!) and was depressed when i spoke to her. She moans to me that she wishes she was strong like me..... yeah, I COULD SLAP HER! lolz

Never underestimated the resilience of the human spirit. U r lucky to have a wife that loves u and cares for u. It will hav to be enough :-) Its unfortunate that ppl will continue to behave in ways that is both harmful and upsetting to u. U dont need that. U definitely dont deserve it.

I am more eager than ever to enjoy life and to live in the moment. take risks. Be braver. it makes life more enjoyable! :-D

my prayer list is growing and ur on it GKH :-D

Pamjw01
Posts: 2
Joined: Nov 2014

Hi Amanda,

I am sorry to hear of the dealings you have had with someone at 50 who could be so selfish and paranoid.  She is obviously one of those people who is a SUPER hypochondriac that changes everything to focus on her.  Just get away from someone like that if you can.  And you are right about the media.  When I had Hodgkin's, it was pretty much unknown to my school.  I didn't talk about it and that was good and bad.  But today cancer ads are constantly on, and I swear it bothers me more today because it's in your face so much!  The good thing is there is ALOT more support out there when you need it.  Just take it a day at a time.  It works.  Take care.

amanda_christy's picture
amanda_christy
Posts: 60
Joined: Aug 2014

Im mostly over it. Cancer is a majic mirror; reveals a lotta crap about a lot of ppl. :-D hahha

U take care Pamjw01

 

The cancer ad below is misleading and makes non-cancer sufferers think were all grey and depressing to be around!!! Very harmful if u ask me.

macmillan cancer support advert 2014

https://www.youtube.com/watch?v=up_ztoeP4h4

 

 

Anonymous user (not verified)

If I had it to do over, I would have been much more private about my cancer. Having people talk about me in the past tense and not include me in discussions of future activities is a bit creepy.

amanda_christy's picture
amanda_christy
Posts: 60
Joined: Aug 2014

WOW! its like ur telling my story! I regret that 2. Y doesn't anyone tell us this? Im not included in activities period.

No regrets though. If we had done it some different way we wld never hav learnt wat little s**ts some of our 'friends' are, right? ;-)

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011
Pamjw01
Posts: 2
Joined: Nov 2014

Way back in 1979 when I was 15 I was fortunate enough to have a great family doctor that went the extra mile.  I had night sweats, fatigue, swollen glands, heavy chest.  A chest X-ray showed what at first was thought to be an enlarged heart.  After closer examination, they realized a had a large mass in back of my heart, and soon after a bone marrow biopsy (ouch), I was diagnosed with Hodgkin's.  I had both MOPP chemo and mantle radiation from my lower jaw to abdomen, and a splenectomy.  Nothing back then helped for nausea except weed.  The things you mention above I did not have except maybe sweets (hey I was 15). Oh how could I forget, I smoked cigarettes since 13 or 14.

Things were ok until my late twenties. I just needed a thyroid replacement. I got married and  I had toxemia with my first two pregnancies, but after emergency c-sections, made it through.  Not too long after that, I was caught off guard after finding a lump in my breast (28 now) and I honestly dont remember much of that-only that it led me to a choice I had to make because I could not deal with cancer AND an abusive husband.  So I divorced him, went through chemo and a radical mastectomy in which they took one of the lats out of my back and flipped it around, took out the lymph nodes, and reconstructed the breast.  i remember that surgery because it involved incisions in the front, under arm and a long deep incision on the back so I really could only lie on my right side for weeks.  Anyway, thought I was done with all that.  Met my other half, had two more kids.  Was in nursing school at 36 and boom!  Was not expecting yet another cancer diagnosis.  This time it was the right breast.  Couldn't deal with reconstruction and so I did not have reconstruction with this mastectomy.  Had chemo again (cytoxan, 5 flurouracil) and hoped that was that.  The next year, a good friend who saw me go through all three cancers was diagnosed with breast cancer and at the end of my chemo I flew up to Boston to her funeral. The next years I had a number of different "normal" surgeries-appendix, gallbladder, ect., but there was always that question WHY?  Why am I still here, and she didn't make it?  I really just blocked everything, never actually dealing with it.  Ten years go by and can you believe it?  Number 4.  This time it was cervical and after complete hysterectomy, I had chemo again (cisplatin), and radiation.  Ok so this can't be happening - think I just went numb...and angry. Still not dealing with it though. The doctors said that there would be muscle wasting and I thought it wasn't going to happen to me.  Just took a few years.  So did the neuropathy.  So did the seizures. And the rheumatoid arthritis. And the monthly excisions (sometimes as much as twenty stitches each time) of skin cancer.  Getting a bone density soon because I have  broken a few ribs in last few months. But hey I'm here.  Got to see my kids graduate.   Last year my younger cousin who was more like my little sister watching me go through all that I have, died after only a few months after her diagnosis of pancreatic cancer.  And again there is that question - why?

 

The only thing that I can think of besides cigarettes would be a reservoir that we lived near and hung out there quite a bit as a kid.  Can't think of anything else.

It would be nice to know and I think you have a great question.  

Subscribe to Comments for "Causes of Hodgkins Hodgkin Lymphoma NLPHL"