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What changes did you make

NailsJHS
Posts: 13
Joined: Jul 2016

Just wondering what changes you all made after your diagnosis and/or treatment.  I've talked to a few survivors who made drastic changes to the way they eat, the cleaning products they use, the way they wash their vegetables, etc, etc, etc. But, even more survivors seem to have made little to no changes other than 'trying to eat better and exercise more'. 

When I was first diagnosed with NHL I thought I would completely change EVERYTHING, but now that i'm 75% through treatment I think I'm getting lazy about it and also longing for my old ways (which I know is natrual) so my mindset has changed. I worry that if my cancer comes back some day I will blame myself for not having changed my life to be completely as chemical free as possible. 

What do you all think?

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

 Last year I pondered your very thoughts but you should know I have always lived to clean lifestyle.  I clean my house with vinegar.  I have always eaten well.  I'm a vegetarian but now I am better.  I'm more vigalent with pesticides and most chemicals.   Truth be told they hurt my lungs and I can't breathe very well when my neighbor sprays their lawn.

 I tried organic haircolor, it's not for me.   I refuse to do gel nails and I won't drink Diet Coke anymore.  I do what I can.  I have gone as far as to hire the best nutritionist and cancer counselor out there.  I learned I can raise the bar a little more so I do.  When I feel well enough, I worked out and feel great.

 I have three oncologist and when I doubted my lifestyle they all reiterated the same thing I could have been so much worse had I not have taken such good care of myself so with that I continue.

What matters is what you believe, everyone here has a different take on these things you have to go with what you trust and is good for you.

 I hired very qualified in knowledgeable people and ultimately they told me what I already knew.

For me I trust my body.  Like I said before, I can't be around  certain chemicals, pesticides etc... my breathing is not good when I am.  When I work out, I feel better, when I eat well, I feel a lot better and like wise.

I do this more to feel well today, if it helps me in the future Amen.

Blessings

po18guy
Posts: 1036
Joined: Nov 2011

There is enough insanity going on in your body about now. You need stability, not radical change. Eat what you can, as survival is the goal. Perfect health is but a memory now. There is basically zero evidence that organic this, pure that etc. will help at all - especially when familiar foods are barely palatable. All of the meds you are on are specified for a particular purpose. Think of it as your immune system in pill bottles. For the time being, that is life. You'll get through this. You can do it. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3353
Joined: May 2012

Nails,

Let me also welcome you to our "little island of hope in this sea of lymphoma."  I was not going to comment on your thread here until Po18Guy did, but he so perfectly "pushed my button" that I can't refrain.  Be aware that PoGuy at times traveles and speaks around the country regarding rare, T-Cell lymphomas.

Scientists do not know what causes lymphoma, and even less do they know what causes it to relapse, when it does.  Some factors are listed as related to the occurence of lymphomas, but these links are tenuous and weak.   And fortunately lymphoma ordinarily does not relapse; virtually all of the 40 or strains of the disease, when they are put into full remission, do not relapse at a rate of 50% or more.  My own strain of HL is considered "prone to relapse," but at what rate ?  15%. That means 85% will not relapse -- a number astronomically safer than what many other forms of cancer can hope for.  Some brain tumors have a 1% survival rate, in comparison. 

To a newcomer, it is natural and instinctive to want to regain some sense of "control" of their health, and "nutrition" is one of the most popular choices for achieving that goal.  "Environmental factors" are another popular reaction.  But lymphoma is a great leveller:  It hits vegans as often as bacon addicts,  full-organic lifestyles as often as people who ignore their environment.  Everything on earth is "chemical," and the designation of "natural" is largely arbitrary and unscientific.  Oxygen is "chemical," but few avoid it intentionally.  Plutonium is as "natural" in its occurence as is, say, nitrogen.  I have a background in submarines, and took cooursework in Radiation Health.  Physicists and nuclear engineers know that even the guys who work in proximity to the ship's reactor receive LESS daily radiaton than a person at the beach, because of shielding and the fact that they are not exposed to the suns highly dangerous gamma and other forms of electromagnetic radiation (going to the beach is actually about as unhealthy a thing as a human being can do).  So "nautural" verses "chemical" is, as I said, largely arbitrary.  Probably the best thing to do while on chemo is relax and rest, and be balanced in diet and such, insofar as you can. Worry and fear are counterproductive. 

My oncologist is Ivy-Trained, and a genius (Stanford, UCLA, five Board Certifications, etc.).  When my wife asked hiim early in my treatment "What should he eat?", he said, "He should eat what he likes."   Most chemo combinations deminish or eliminate appetite, although Prednisone (when it is part of a chemo set) will artifically stimulate appetite -- one of its intended uses.  Some people receiving Prednisone on chemo even gain weight.  Most lose, and lose a lot.  Taste changes are common, as is chemical anoxeria -- an adversion to food.  I lost all sense of taste about three months in, and lived mostly off of breakfast drinks. "Fetishes" are common: one of the only foods I could take was french fries.  A friend, who had lymphoma decades ago while in his teens, and who was on an older combination known as MOPP (still in occasional use, for patients who can't receive ABVD), told me that for four months all he ate was pot pie; he could tolerate nothing else, and he went from 250 to around 150.  These craving are random and inexplicable, similiar to food issuues in pregnancy.  My next-door neighbor a few years ago on R-EPOCH, a young guy only in his 30s at the time, whent from about 300 to 150 or less, and could not walk.

At times like that, even fast-food is healthful, compared to no food at all.  Most cases are not as severe as these, and some people experience few food issues at all. The spectrum is broad.

But when a ship is sinking, no one is vacuuming the carpet in their stateroom.  Chemo, as Po stated, is the lifeboat.  Head to the rails.  I have been on a ship declared in extremis -- a Latin term used also in medicine, that translated means essentially, "at the point of death" -- about to be lost.  Similiarly, I was once in ICU following a car crash, and heard myself "Coded" of the P.A. system. People can come back from the worst of circumstances.

I am all about heathy eating and avoiding environmental hazards. Regardless of what they do for lymphoma, they are helpful in other ways, such as in weight control and cardiovascual health.  But they are no magic bullet for lymphoma, because there isn't one

Take care of yourself and I hope you move into full remission rapidly. Most writers here do: that part IS science.

The numbers are on your side,

max

I have taken this song as my anthem to cancer. Imagine that Kelly is singing this to cancer, and feel the power. It fits so  well.  Over 202,000,000 hits of this video on YouTube, one of the most for any song, ever. 

https://www.youtube.com/watch?v=Xn676-fLq7I

Sal0101's picture
Sal0101
Posts: 125
Joined: Sep 2015

This is a hard one.  I've always eaten healthy.  I love vegetables and like fruit.  I've been buying anything I couldn't peel organic for years.  Yes, I like pizza, but veggie is my favorite.  I walked 4 or more days a week and mix it up with other types of exercise. Not crazy exercise but enough to feel good. When family, friends and co-workers found out I was diagnosed with stage IV DLBCL they were shocked. And even more shocked when I relapsed after 5 months.  I was the healthy one. I have 4 brothers 2 sisters, NO history of any cancer in my family going way back, except for my dad who died from lung cancer 27 years ago today( heavy smoker).

So yes, I was angry.  I didn't change my diet much, I still like good food, veggies, fruits, smoothies, kale, salad, but am no longer leaving out the "other" good food! Potato chips, dark chocolate covered blueberries, and ice cream!  I've heard somewhere on this forum that I should fatten up a bit before the stem cell transplant, so on the days my appetite is good I eat what I want, and yes it does still include healthy clean eating Most of the time. 

2nd round of R-ICE started today, so we'll see how long that appetite stays good. 

i do think about chemicals, cleaning agents etc, but haven't really made any changes there. 

Sharon

 

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3353
Joined: May 2012

Sharon,

Yes, everything in the cancer experience is hard, as you note in your first sentence. I can recall during my first month or two with lymphoma, and would awaken, and think, "This can't be real, I know I was dreaming."   Six years later, with an additional prostate cancer experience added in for good measure, today cancer is just a background annoyance for me, a remote fear, such as a person might have of spiders or snakes or whatever they fear.   Most hours of the day, it is not in my consciousness at all.

The great Russian noveliest Alexsandr Solzhenitsyn, who was in the Soviet Gulag prison camps for years, moved to Ammerica after being exiled. He gave the 1979 Commencement Address at Harvard.  His opening remark was, "Harvard's motto is 'Truth.' But truth is seldom pleasant; it is invariably bitter."

Medical truth is indeed hard, bitter. It is so strange to us when a 25 year old mother gets breast cancer, or a person with lifetime good health and habits gets lymphoma.  But such is truth.  The health expert Jim Fixx, who wrote jogging books for cardio health in the 70s, died one day at 52 years of age -- WHILE JOGGING, of a heart attack. The irony of that is astronomical in scope.

Like you, I have always loved greens, especially fresh collards, turnips, etc.  I have never smoked in my life, enjoy cold beer in the shade, watching the dog chase squirrels,  We all do what we can for wellness, and move on.  Take it as it comes; there is no other way to take it.

I have heard that R-ICE is tough, I wish you the very best with it.

GKH,

You and two or three others at these Boards are my soulmate....that will never change, in the good times and the bad. But I am hoping for some good years for all of us.  I would love to go a year without a surgery, or new diagnosis.

max

Sal0101's picture
Sal0101
Posts: 125
Joined: Sep 2015

So true Max,  

I still wake up every morning saying this can't be true!  I'm quicky snapped back into reality However and have to keep my mind sharp to research, read and listen to my doctors so I get the best care available.  Stem cell transplant is next and I want all the info I can get to prepare. This board has been a tremendous help.

I remember Jim Fixx and his story.   My husband was a runner at that time. We obviously we're shocked.

Sharon

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3353
Joined: May 2012

Sharon

I myself bought all of Jim Fixx's books. When he died, I was running 26 miles every week.  Much of that was sprint pace. During that time I ran a 4.0 minute mile. 

My at-rest heatbeat when I went in the Navy was 49.  I was the epitomy of health, and have always been thin and energetic.

Until lympohoma laid me on my a--, that is.  Nothing we do encourages or discourages this disease. Some need to think otherwise.  Facts are most efficiently faced directly, but whatever works for you, go with it.  Whatever gets ya through the night, it's all right, all right/ Do it wrong or do it right, it's all right, all right.  -- John Lennon

max

Anonymous user (not verified)

I for one was a very healthy eater, took vitamins, avoided sunburn, ate mostly vegetables, was at my ideal body weight and exercised often and strenuously. So what do I get? Stage IV lymphoma, melanoma and squamous cell carcinoma. I am thoroughly convinced that, except in extreme cases, any connection between diet, exercise and cancer is anecdotal and tenuous at best. I do believe chemicals ( dioxin for example) can cause cancer but very unlikely in the minute traces found in food. There is absolutely no, I repeat NO, demonstrated link between diet and probability of your lymphoma relapsing. Maintain a good weight, don't smoke, eat sensibly, avoid extremes but eat whatever you like. Have that martini if you want it. If you take some comfort in the false sense of control that some people feel when they eat a strict diet and avoid "bad" things then thats OK too. Take comfort wherever you find it.

famous quote: "This burger has too much bacon" said by No One, Ever

"Democracy is two wolves and a lamb voting on whats for dinner. Liberty is a well armed lamb contesting that vote"

Benjamin Franklin, 1774

Good night all.

Anonymous user (not verified)

My Ben Franklin quote was not meant to be political. Ben was talking about two wolves (France and England) and their plan to divide the new world (the lamb) for their consumption. The lamb had no say and was "out voted" 2 to 1. But the lamb chose liberty in the form of  a game changing revolution. The wolves were no longer in charge.  In this case I was thinking of Max. His wolves are HL and prostate cancer. But through his independent attitude and being "well armed" with facts, not fantasy, has survived the wolves and prospered. He is liberated from fear. Hummmm ..... I am not usually that deep, especially not online. My wolves are fnhl and squamous cell.

janaes
Posts: 786
Joined: May 2016

I had hodgkins lymphoma 23 years ago.  I will be honest i didnt eat good before the diagnosis.  I ate fast food alot because i worked at a fast food resteraunt. I was young and really didnt think healthy eating was important for really any reason. After I was treated i got on with my life.  I do remember thinking that maybe my unhealthy eating might have caused my cancer.  I didnt think about it much it was just a thought here and there.  I did cut down on my fast food but it wasnt drastically at all.  I still ate fast food and did for many years.  In fact I still do.  Probably not as much as i did as a young twenty year old.  I think  its mostly because i have kids and want them to eat well.  Not to avoid cancer.  I think its just a good thing to do for even things like avoiding diabetease later and not gaining weight. Not even just that its to be healthy in general to feel good.  I still need to work on that myself.  My point here really is to say, I think there are people who dont eat healthly and still dont get cancer.  My family included.  I like what sal0101 said.  Besides grandparent (and who knows if they ate fast food) I am the only one in my family who has had cancer. I currently am doing chemo for uterine cancer.  So i have had cancer twice. I cant even think of a cousin or aunt or uncle who had cncer.  I know my siblings and parents dont eat real healthy. I dont live with them so I dont know everything but I know some and know how it was when i did live with them.  I just dont believe even unhealthy eating causes cancer.  It just doesnt make sence to me.  I dont know what causes it but i just cant think it is cancer.  Thanks every one for sharing your comments

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

This is from MD Anderson 

https://www.mdanderson.org/prevention-screening.html

thought you might be interested.

lindary's picture
lindary
Posts: 675
Joined: Mar 2015

Not me. 

I ate my share of fast food, exercised once a week (if I needed it or not) and enjoyed a beer (not water) several times a week. Around 15 years ago several people in our dept were told they had cancer. One was a vegetarian and had multiple myleloma caught early. He fought it for 11 years and the longest he was in remission was 3 years. The other 2 had breast cancer and are survivors. 

Because of them I did work on drinking more watter and eating more veggies & fruit. I did not give up my meat! When I was diagnosed and started treatment I ate what I could and didn't really care about how healthy it was. I will say I avoided alcohol and sweets. My biggest problem was when I didn't fee like eating much my husband would make some of my "favorites" for a meal. A few of those foods I haven't touched since I got into remission. 

While going through chemo I did try to avoid germs where I could. All fruit had to be washed and skinned. (I only ate apples, oranges and melons). Meat had to be cooked thoroughly. For my husband that mean you could use the meat to re-sole your shoes. I still had my daily yogurt (chocolate whip) and V-8 plus added a nutritional drink. Veggies (the 5 I eat) had to be cooked, not raw. Did I mention lots of water. 

One thing I did miss was having a salad a couple of times a week. One of my go-to foods that I still eat is Mac & cheese. Not high on the nutrion chart but I ate it no matter how I felt. I also liked spicy food simply because I could taste the spices. 

So now I have lost 30 lbs from the effect of the treatments, I am in remission and getting back to my "old habits". I am having my salad twice a week but we usually have meat as part of our meals. Still have the yogurt & V-8 along with a nutritional drink uring the day. I am eating smaller portions because it would good to lose more weight. I have my stash of chocolate in the house again. Oh, there is always several bottles of water in the frig. Plus I am really trying to walk more. Right now I have found that playing Pokemon Go is a good incentive for more walking. 

The downside is that I am at an age where laying around for a couple of days can make me feel weak so I do my best to keep moving. With all of the treatments my legs have been very weak no matter how much I walk. I started seeing a massage therapist a few weeks ago to get the knots worked out and it has helped a lot. 

All you can do through all of this is listen to your body woth work with the drs. 

And don't forget to drink plenty of water.

Hope_Street's picture
Hope_Street
Posts: 1
Joined: Jun 2016

I was diagnosed with NHL something something a bit more than two months ago.  Was perfectly healthy, came absolutely out of the blue.  I'm a pretty serious guy, an ex-Manhattanite now living in Providence.  Never had time to laugh or to talk,  always concerned about accomplishing and achieving -- conversation was either business or it was not.  Cancer changed that.    There have been so many degrading moments, like being so confused and exhausted that I didn't realize I was vomitting all over myself in an infusion session until someone kindly told me.  Thought it was the funniest thing and I just didn't care.

Life is so different now.  People are precious, and by people, yes, I mean my fellow cancer warriors, my new tribe.  Always  a bit of a whiner and complainer, I just don't have that in me any longer -- I don't want to complain, it brings no comfort.  I want to be tranquil, to be brave without being arrogant, to be compasssionate without being sappy.  Or phony.

 

Even when in pain, or exhausted from a cycle of one week infused in the hospital cancer center and two weeks off, I won't tell my family how much I hurt, or how sick I feel -- it doesn't seem right to complain and I don't know why it doesn't. "I'm fine, no problems here" is my stock answer to friends or famly.  And I think it's important to not burden other fighters with my woes, I want to hear how they are doing, how their treatment is going.  I want to be strong for them and for some reason this means a great deal to me.

Thanks for the forum, I'll be reading and visiting.  I'll start moaning at some point, it's inevitable, but for now I can't, and at no inconvenience to my self, really, it just seems to work for me right now.

 - Hope Street

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3353
Joined: May 2012

Welcome, Hope Street.

You will find the writers here to be very variegated -- a wide range of views and reactions, treatments, medical conditions.  You may find that your own views evolve over time, change from one attitude to another.  But of course there is never a 'right' or 'wrong' way to feel or assess having cancer with.

Lymphoma is a great leveller; it hits the fit and the fat, the rich and the poor, all the same.

Beautiful dog, but I do not recognize the breed. I have had an Akita, chows, a variety of stuff.  But a dog is a wonderful companion, especially in illness.

I used to be a submarine contractor and visit Providence on occasion. There was a Naval engineering group known as "NUSC" ('Naval Underwater Systems Command') there at the time, but I am unaware if it is still HQed there any more, so long ago. I worked with the displaced when Charleston Naval Base and Shipyard shut down due to a Federal RIF in 1993:  70,000 jobs displaced at once, so these commands do move around.  R.I. is stunning, especially the coast at Newport.

So sad, so fresh, the days that are no more. ----- Alfred, Lord Tennyson

 

max

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Psjeepster's picture
Psjeepster
Posts: 62
Joined: Jun 2016

Eat what you want. Enjoy life. 

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