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HL Causes

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

I thought I already posted this and maybe it was removed. The question I have is why aren't Dr.s asking more about what we did before finding the HL? It seems like they would want to know all of my activities, medicines and habits and then compare to all others with HL. I hope that finding the cause is just as important as finding the cure. It's like I want to change everything I was doing before HL to make sure I don't get it again. By now, with so many HL patients, you would think they would have a good idea of the causes. There should be a worldwide chart for each confirmed type of cancer and then list medications, activities etc. that the person was on/doing 5 years before diagnosis. Seems simple. However, not once did my dr. explore this with me. The fact that I just started swimming in chlorine two years ago, started taking two kinds of alergy meds in the last year, etc. etc What's up doc?

Anonymous user (not verified)

must be done in a very specific way to be meaningful. There is a lot of anecdotal data otherwise.  There are a lot of people who pore over statistics about patients for a living. They look for clues, not answers. The main cause of HL is the Epstein-Barr virus, or so I have been told. I believe that you can volunteer your background info to some sites which collect statistics. I will see if I can get you a link. Good question though.

Max Former Hodg...
Posts: 3705
Joined: May 2012

Jeff,

The cause of lymphoma is unknown because the cause of virtually all cancers, and indeed most diseases, is unknown. There are a few, partial exceptions, such as that skin cancers seem related to sun exposure, except that some people with very minimal exposure get it. Lung cancer is frequently linked to smoking, except that some people who smoke three packs a day for 60 years never get it, while a substantial number of people who have never smoked do. Exposure to a virus causes the ful. But for every cleary identified cause of a disease, they are plenty of others that are without a known cause.  Obviously, minimize exposure to the sun, and don't smoke, but not because the "cause" is known, because it isn't.  

GKH mentioned the viral link in lymphoma, except that more than half of lymphoma patients are negative for that as well (I am negative).  There is no detected  (currently known) genetic marker for lymphoma or leukemia developing.  My treatment center did a very extensive questionaire regarding my medical and genetic background (as they do of all new patients), and I have read studies on the speculated cause(s) of Lymphoma which show that a lot of reaserch has in fact gone into this question. Just no answers.  The same is true of many others. There is not even a theory as to why many brain tumors emerge. And so on.

Other diseases I have read a good deal about are the same. Consider Parkinson's (which doctors say I am over 50% risk for, due to RBD, a sleep  disorder). What Parkinson's does to the brain and brain stem is known, and to a good extent how it does what it does is known, but why is anyone's guess.  Even why people have heart attacks is wide-open.  The tradionally held view was that plaques deposited in the arteries, and then caused blockages.  An equally strong view holds some sort of infection to be at the root, with plaques have a much lesser role.

The largest study in history of saturated fats in the diet (reviewing all of the data from over 72 previous studies on the subject), conducted by Cambridge University and Oxford University released several months ago concluded that saturated fats have NO (detectable or clinically demonstratable) linkage to eventual heart attack: not only no weak linkage, but no linkage at all.  The writer of this article obviously temporizes a bit, especially at the beginning, since this study is so against the grain. This makes a mockery of decades of "established science" on the subject.  Scroll to the bottom of the rerport for how the experts interpreted the data, to avoid the "spin" near the top, which is damning enough. http://www.nhs.uk/news/2014/03March/Pages/Saturated-fats-and-heart-disease-link-unproven.aspx 

I did my Intake to my cancer center's Wellness Following program a few months ago, and one of the people I met was the Registered Dietician. The Oxford study had been published about two months before I met her. She was finishing her raw broccoli sprouts lunch when I was taken in to see her.  Her blurb ? All of the traditional warnings about fats. She seemingly had never heard of the new review.   

I will continue my Lipitor, and eat as "heathy" a diet as I am comfortable with, but there is little to suggest that it will do anything regarding a futher heart attack that I might or might not have.  The famous, bestselling heart health writer and exercise guru, Jim Fixx, who more-or-less founded the running craze of the 1970s (I was a believer, and ran 26 miles a week for years), died in 1982, at the age of 52 , of a heart attack !  While on a jog !  I am not making this up !  http://www.nytimes.com/1984/07/22/obituaries/james-f-fixx-dies-jogging-author-on-running-was-52.html

I hope the cause of lymphoma is someday known. It seems a bit far away at the moment.

max

 

Anonymous user (not verified)

I mostly agree with Max. To me it seems there is no simple "cause" for cancer. Similar to traffic accidents, some specific symptoms CAN increase odds of developing specific cancers. Just like drunk driving definitely causes accidents but not all accidents are caused by driving drunk. Some traffic accidents are just******** bad luck. I believe the link between Hodgkins Lymphoma and epstein-barr virius is well demonstrated as is genetic disposition to some breast, lung and colon cancers. Hopefully there will be a magic bullet to cure all cancers but that seems unlikely. My best guess is that genetic research is our best shot at a cure.

Anonymous user (not verified)

I did a rather extensive intake questionnaire. I am surprised Jeff did not.

Folks24
Posts: 107
Joined: Feb 2007

I think there is no simple answer.

I had prior to being diagnosed with NHL, Sjogrens which is an auto-immune disease. It is a cousin to MS, fibro, etc. I knew after being diagnosed with the Sjogrens, I had a higher risk of developing NHL, so I wasn't "over the moon" shocked when I was told I had lymphoma.

I honestly think all cancers develop by some way regarding the immune system. Course that is just my opinion. BTW: It took me 3 years to finally get diagnosed with the Sjogrens so the drs don't know enough about immunology yet.

Rocquie's picture
Rocquie
Posts: 857
Joined: Mar 2013

Jeff, when I was first diagnosed, I did the same thing you seem to be doing. Self-examining everything about myself inside and out, trying to figure "what went wrong and why?"  I have always been very vigilant and careful with my life and my health. I have always been active and physical, I have maintained an excellent diet, didn't smoke, rarely drank alcohol, paid attention to and took care of my spiritual and emotional health. I was never sick, never had any surgeries, no hospitalizations or emergency room visits, took no prescription medicines. I've never even been in a car accident--not even a fender bender. Three months before my diagnosis, I had a complete physical, including blood tests. Everything was "normal" and I was considered extremely healthy. 

Then I got sick. Very sick. Very quickly.

Cancer is caused by the uncontrolled growth of a single cell; a cell whose circuits have been broken, unleashing a cell that cannot stop growing, a cell with unfathomable power of growth. This growth can be triggered by many things, viruses such as EpsteinBarr and HumanPapaloma, auto immune disorders such as Sjogrens, smoking, chemicals such as pesticides (often cited in Lymphoma), genetics and hormones. It can also be age related and one of the reasons it seems so much more prevalent is simply because people now live longer. It can also remain elusive and mysterious. 

Cancer is as old as the ancient Egyptians. Doctors and Scientists have been trying to decode it, fix it, cure it, understand it, tackle it, eradicate it for that long. More is known now than ever. Treatments are better, more successful, and much, much more humane. Cancer patients like us are not only surviving. . .We are living.

 

 

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

Thanks guys for allowing me to rant a bit. I was having a tough week! What all of you have said makes sense. I just want to know the trigger, but, like all of you have said, it's tough to figure out. 

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Jeff,

 I have been asking the same questions since 2010 when I was first diagnosed. My FNHL may have been caused from chemical exposure while using pesticides around the school yards. But..no doctor so far has given me a yes or no answer, just alot of "maybe's". I've researched and made myself crazy on occassion trying to figure out what I can or should now be doing differently. I was so bummed in April when my cancer showed up again. I keep thinking, why didn't the 2 years of Rituxan maint keep me in remission longer than a year...it did others, why not me? I've given up trying to find answers,and instead just wake up each day and pray it will be as good a day as possible without something new popping up, sending me off to the doctor again! Watchful waiting is not easy for me right now, because I feel like I am doing nothing to confuse,scare,or at least attacking the active cancer inside of me. I know it sounds silly, but sometimes I think the cancer is just having a hay day wandering around my body looking for another place to settle and disrupt my life. Since 2010 I have had this crap show up in 6 places...groin, abdomen, neck, right eye, right cheek and right paratracheal chest node. I'm like..."where next"? I get how you are feeling, I just don't have any great words of wisdom or solutions to share. I just go back to the same old mantra...."live life one day at a time, as best as you can and as stress free as possible". The rest is in Gods hands. Wish I could be more help, but I'm flying by the seat of my pants right now. Take care...Sue 

Anonymous user (not verified)

Hi Sue. Hope you are settled in at the river. I am at my cabin through early September. The temp and humidity on the mountain are much, much better than the lowlands. And its quiet.

You are much more knowledgeable than I when it comes to treatments. However I wanted to mention that I met a guy who relapsed 13 months after he went off Rituxan maintenance. He was then put back on it and things cleared up and he is in remission again. Its worth considering. I know some people are on Rituxan for several years. Its only considered a failed therapy if one experiences a relapse while taking infusions. I understand what you mean about fearing the cancer has nothing fighting it. We are both going through that. I refuse to let this ruin my summer so unless I feel markedly worse I will not be going back before November.

Good luck fishing. Enjoy your summer.

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Thanks GKH,

  I am truely enjoying our new life on the river, I just had to get past the bumpy landing after getting here. Tongue Out Radiation on my eye and then the emergency appendectomy took the wind out of my sails when we first arrived, but I'm back on track now. My new Oncologist here in Hood River did tell me that since I had such a good response from the CVP-R and 2 years of Rituxan, that we can do it again when needed. Right now she is letting me rest and relax for the summer and then this fall we will retest and see how things are looking. Of course I will have to watch things in the meantime, so unless I start feeling badly, I like you, plan on enjoying every minute this summer. Big fishing starts up at the end of this month, so I'm anxious to get that going. It's suppose to be a record year for salmon and steelhead and since we are minutes from our fishing hole, the summer is shaping up very nicely! I'm off to my elderly Aunts house tomorrow for the next 4 days. She lives about 5 hours south of us. She is back in the battle with her breast cancer, so I'm taking her to chemo on Tuesday and then stay a few more days with her. She's 89 and needs some help. You take care and enjoy your cabin retreat with it's nice weather and peaceful surroundings. It sounds delightful! CoolSue

vinslymphoma
Posts: 24
Joined: Feb 2014

good to be back here after few weeks..Hope you are getting better Jeff..and all the very best...

i dont know if there is any common reason that we can find ourselves..but i want to see if we can group up reasons to avoid relapse atleast...for those who are living in remission...please share if there is any type of food that you avoid or please share the types of food that you kept taking and ended up in a relapse.

does anyone know how do we keep up ourselves atleast to avoid a relapse..

 

 -vinoth

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