How did we end up with this disease?

[laylalulu]

Hi I was just wondering if anyone feels like where did this come from? Pollution? Smoking? Chemicals? I smoked not heavily but I smoked, I've spent my life spraying crap out of bottles, oven cleaner heavy cleaners etc. And I dye my hair regularly , I was also a huge consumer of sugar twin, Splenda aspartame products as I was always on a diet. Also consumed a lot of sugary treats over the years... if I had to put a mark on one I think the aspartame did damage ... just curious if you know how you got NHL? Thanks

[Afleisch44]

Nobody can pinpoint with certainty how they got NHL, it just isnt possible

[laylalulu]

Probably a combination of all the bad things in this world pesticides etc..

[Merrymary in reply to laylalulu]

That's exactly what it is. The poor planet is sick. And now we are suffering the consequences.

[valderi]

I'm so sorry. I don't think you can label one thing as the cause. I do think the pollution has something to do with it but who can tell. Hope treatment goes well for you.

[TezzM]

I smoked into my thirties ( I'm 70 this year) though being a male haven't done the spray cleaner thing or used sweeteners. My wife does all of those things including using strong bathroom cleaners whilst having a shower, she is as fit as a fiddle. I'm sure you would get different stories from most on this site. As one who has indulged heavily in the joys of joys of food and wine I have started to gradually alter my diet to include more fruit and veg, much more. I still work part time and enjoy that. Next is exercise, though with a hip and two knee replacements I am probably limited to walking and swimming. So be positive, try to live as if things are normal and don't dwell on negatives. Good luck, and stay in touch

[R615-r1122_]

Chemicals , I am sure ,is a main threat .

My dad's report on his cancer said , chemicaly related ..

There are so many things with these warnings .

Smoking is a big one .

Good luck stay strong ..

[jmcobb50]

There can speculate there can be many contributing factors. For me, I feel my very stressful job, 1500 people reported to me and I got up at 5:30 am for work. I never slept well so I was continually sleep deprived. Many of us grew up on foods that had been filled with hormones and other things.

[Bhlool]

Air pollution is the main reason for most diseases specialy for cars + chemicals poisonous in the food ,drinks &water

[Sandy_Mouse]

One other factor may be someone who has an auto-immune disease, ie Sjogren's Syndrome. Our lifestyle/choices likely plays big part in our health. Address your stress, manage it...as best as you can. Eat healthy foods. Rest & do some walking, biking, nothing too strenuous! Try and turn this around! Good luck to all! We all need help! <3

[laylalulu]

Thanks for all your views 😊

[R-16728]

I pondered this question often while I was in treatment. It comes up in discussions fairly regularly. I've talked it over with my oncologist. I've grilled med students that do preliminary examinations on me. Was it something I did? Was it something I didn't do? I was 68 when I was diagnosed. That's a lot of years to pick up some nasty exposure to hurtful chemicals. I'm fit and always have been. I eat well. I'm outdoors more than many who don't suffer this disease. So what the hell happened? Why did I get this? My conclusion is inconclusive. There is no easy, simple answer.

[Merrymary in reply to R-16728]

The blame game can never be won. Why isn't as important as the response of how you now deal with your health issues.

[Janekite2015]

There is some evidence that Mantle cell lymphoma is sometimes caused by exposure to Round Up, a Monsanto weed killer. My husband died of a different nhl. Seems that better living though chemicals hasnt quite played out that way. All kinds of chemicals, plastics, pollution, even heat are increasing cancer.

[BelindaTupper]

My doctor told me I didn't cause it and could not have prevented it....said it was "bad luck" really. If it's all the same....I'd like to throw the dice again.

[Josie2rulrs in reply to BelindaTupper]

So true.

[Hidden]

I'm sure the aspartame didn't help, but doctor feels that stress has a huge impact on your autoimmune system. For me I know for a fact it was stress. Was a very healthy and fit person up until about 2 years ago, then I was put under a huge amount of stress which caused everything in my body to be affected, so stress it is for me.

[R-16728 in reply to Hidden]

So what you're saying is that each of us may have a different, specific cause? I think if stress was the single culprit we'd have many more cases. Because it often strikes "older" individuals, I'm guessing it's a culmination of many things over a longer period.

[AliceRaia]

Recently diagnosed with NHL follicular stage 4 at 55 yrs old (female). I grilled my oncologist on this very question. I have been an organic eating vegetarian for 30 years. Never smoked. Have not handled harmful chemicals - mostly went with organic cleaners through my life. Lite alcohol (and when I do, it's red wine). Triathlete in to my late 30's, work out 5x a week including 45 mins of cardio a day (well - until I started treatment).

My oncologist's answer ? Random. There was nothing I really could have done to prevent this. Not sure I am 100% aligned to that answer but I am left scratching my head.

I do know that my lifestyle coming in to treatment (RCHOP) has left me able to tolerate chemo well and continue working.

I wish all of us facing this challenge a healthy and positive attitude along with remission or a cure in our futures.

[R-16728 in reply to AliceRaia]

Pretty much how my diagnosis played out too. I was 68, traveling in Ukraine, when I had an attack of appendicitis. Blood tests warned that something wasn't right in my blood. Bingo! I was diagnosed when I returned home. Never been sick a day in my life until now. Always fit etc. For now the best word seems to be "RANDOM".

[laylalulu in reply to AliceRaia]

Alice Raia with your healthy lifestyle it does make me think it's very strange you got NHL. Nobody's safe from cancer it seems. I also agree with you fit and healthy is much better going into treatment, thanks and good luck

[Josie2rulrs in reply to AliceRaia]

You did live a healthy life. !!!!! Let's hope new discoveries come up soon

[Shar0n Volunteer]

I don't know, laylalulu. I always made my own cleaners; avoided sweeteners; avoided excess sugar and ate a good amount of veggies although maybe a lot of carbs too. I did dye my hair - no longer do that. I did have high anxiety levels all my life. I had a high responsibility voluntary job which stressed me a lot - have given that up now to concentrate on staying healthy. There was a lot of cancer in my father's family but no lymphomas. I've stopped wondering about why because it inevitably leads to self blame and that won't do anything but harm at this stage. Acceptance is a long process.

[laylalulu in reply to Shar0n]

For sure, I don't dwell on it at all. When I saw how much follicular lymphoma was on here it made me wonder do we have anything in common that's affecting us. Likevyou say we need to concentrate on our best health now thanks 😊

[Whitley55]

I wish I knew what caused it. Doctors cant say

[Josie2rulrs]

I too would like to know. My doctor says that the only thing they know for sure is that lymphoma comes from pesticides and herbicides

[Robin-Newman]

My oncologist asked me about exposure to chemicals. My father worked a a chemical plant all his life. No doubt came home on his clothes. He died of cancer in 1980 of stomach cancer.

I worked a an elementary school for several years . I ran copies on an old copy machine. I had to pump ink solution into the machine. I will never forget the fumes. I have colored my hair since I was in Jr. high school. I believe my NHL is from Chemicals. Not all cases, but for me I believe mine came from chemical exposure over the years. Plus we have 2 plants in my town that pollute the air and water. And another plant 10 miles down the road.

I do find comfort in knowing treatments for cancer has improved over the years .

Not always and instant death sentence.

Since my diagnosis 7 years ago . I've seen my grand kid grow into a teen, traveled some what. Made new friends. Ate some good food. Life is good :o)

My next check up is in April. I expect a good report if not, I will take care of business as needed. Best wishes to you my friend. And all who read this.

[Andilynn]

I live a fairly healthy lifestyle. When I was diagnosed with splenic marginal zone lymphoma, my thoughts were that it may have been caused by one of two things. I hate bugs, so we've always had our homes sprayed by exterminators inside and out four times a year (for 41 years!). Also, to help quell hot flashes, I took all kinds of over the counter remedies. Perhaps these contributed to my getting SMZL.

I'm curious if anyone has had blood work done to test their immunoglobulin levels. If so, are they normal? Low? Did they change before and after treatment (if you had treatment)?

[laylalulu in reply to Andilynn]

What are immunoglobulin levels?

[Tinkerbellcgy in reply to Andilynn]

My oncologist routinely tests for my immunoglobulin levels. Because my levels continue to be low since my stem cell transplant in 2012, I receive monthly ivig transfusions.

[Andilynn in reply to Tinkerbellcgy]

Tinkerbellcgy, Do you mind sharing what your IgA, IgG, and IgM levels were before and after you started transfusions? Mine were low before Rituxan treatment and lower now. I plan to ask my oncologist next week if he thinks that's just normal for me.

[Tinkerbellcgy in reply to Andilynn]

Andilynn, I am sorry but I don't have copies of those results. Although my oncologist routinely adds the immunoglobulin test to my blood work, he monitors behind the scenes. The only time the levels are addressed is yearly when it is renewal time for his ivig transfusion orders.

[Andilynn in reply to Tinkerbellcgy]

Tinkerbell, Thanks for your reply. Your levels must require the ivig infusions. I don't think mine require that at this point. I understand that the two years of Rituxan that I've had knocks the immunity down too.

[Tinkerbellcgy in reply to Andilynn]

Andilynn, the fact that my immunoglobulin levels are low aren't really related to the use of Rituximab. My levels were fine after 6 cycles of R-CHOP in 2008 followed by 2 years of Rituximab maintenance.

My immunoglobulin levels fell drastically, as they should, when my immune system was stripped down in preparation for my stem cell transplant in 2012. The problem arose after transplant when my immunoglobulin levels failed to recover to the level they were pre-transplant. They have never completely recovered and even with the ivig transfusions, my immonuglobin levels are operating at about 50% at best. The ivig transfusions give my immune system the little boost it needs to help ward off infections and to help keep me healthy. After 4+ years, it is doubtful they will rise sufficiently for me to cease receiving the ivig transfusions.

[Andilynn in reply to Tinkerbellcgy]

Sorry to that this will be a lifelong issue, Tinkerbell. I hope that at least, it helps keep you healthy. That's what it's all about.

[Andilynn]

It's a blood test that shows how well your immune system is working. It measures the antibodies in our blood. That's what fights antigens such as viruses, bacteria and toxins. I had one done before treatment in 2014, again in July of 2016, and again on Monday. My numbers are low and get lower every time. It makes me wonder if that's part of the reason I got sick.

[laylalulu in reply to Andilynn]

Oh I see, I was sick a great deal a year before my diagnosis, colds wouldn't go away, bladder infections etc. now I feel healthy as ever. My doc never gave me any info on much of anything actually. I am not sure if he did this test you speak of or not.?I don't even know what stage I was at. We just listened at first and didn't ask questions. I think we were of the opinion everything was going to be ok so don't ask for bad news. I'm not sure why i was so quite about it all. I see on here people know what their blood counts are and all kinds of reports. I'm going to prepare some questions for my appointment next month. Are you allowed to have copies of his reports? Thanks

[Andilynn in reply to laylalulu]

I get all my reports online via email. Our local hospital in Ohio has a patient portal where I can access results of any tests. I probably see the results before my doctor gets around to looking at them. If a result isn't in the normal range, I am able to prepare questions for upcoming appointments with my doctor.

[laylalulu in reply to Andilynn]

How great is that? I wonder if this is available in Canada? We don't even getvacphpnecsll unless there is something showing up. Makes you sit on the edge of your seat wondering if they even saw the bloodwork. I must check this out. Thank you for that andilynn

[laylalulu in reply to laylalulu]

Should read phonecall* up there ugh

[Andilynn in reply to laylalulu]

It's a good idea to phone your doctor a few weeks after blood work just to confirm that they read the reports. I have learned the hard way, that they don't always see it. I'm getting better at being my own advocate. Can you ask your doctor for a copy of your test results so you can keep them in a file?

[Tinkerbellcgy in reply to laylalulu]

Laylalulu, it depends on what province you live in whether your test results are available online. I believe they are already available in Ontario and Alberta is scheduled to make them available in the near future. Simply ask your oncologist and/or family physician for a printout of your lab results at each visit. They should have no problem providing them to you.

[laylalulu in reply to Tinkerbellcgy]

Thanks girls

[Janekite2015 in reply to laylalulu]

I am in US, Indiana. All my docs have web based portals where I can see my test results.

[yooper5]

SV 40 virus was put in the polio vaccine back in the late 50's. It causes 50% of soft tissue cancers. And in my case I had Hep C from a blood transfusion in '74 that was not diagnosed until my cancer diagnosis. Chronic infections also cause lymphomas. Read Dr. Mary's Monkey for more information.

[Whitley55]

I sure would like to know how I got caught keep asking the doctors but they don't know