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Any LT survivors changed ways of living?

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I'm not what you'd call a long-term survivor, but getting closer to the 1-1/2 year mark...hooray!!!

Curious...did any of you make any big changes to your way of living? Such as foods (organic), grass-fed meats, no red meats, avoid sugars, certain vitamins, physical exercise, avoid household contaminants, etc.

This is just a partial list, but I'm trying to take better care of myself and know so much of the environment around us can affect our health. Like to know if any of you survivors are on board with any new life-changing ways. Suggestions?

Congrats for being in the Long-Term Survivors Club...you all deserve to have happy, healthy lives.....
Jan

KathiM's picture
KathiM
Posts: 7878
Joined: Aug 2005

but part of that was necessary...

I cut way back on my beef...it takes a long time to digest, and so, without the lower part of my colon, it causes trouble. I also had to cut down on milk...became lactose intollerant from the chemo/rads to my pelvis. The perk in both of those is that for the first time in my adult life, my cholesterol was and still is in normal, healthy range..

I always ate fairly healthy, and exercised regularly...still do. So that didn't change much, except for the weight-bearing for the osteoporosis from the chemo for my second cancer, breast...

I now need to be careful of my 'special' arm...not lifting too much, or doing anything to potentially cause lymphodema...

The rest of my life, well, it's different, too. I now live in 2 countries...each one for 6 months. The lesson I learned from my experience was that my 'someday' was now...

I still get caught up in life's menusha...but try to remember from where I came, 6 years ago...

Hugs, Kathi

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

:)

Couldn't resist :)

Take care,

Joe

KathiM's picture
KathiM
Posts: 7878
Joined: Aug 2005

I've always wondered how it's spelled...lol!

With learning a second language (a must: Dutch-living in The Netherlands...lol!), I find myself back in 2nd grade phonics...ROFL!!!!

Thanks for the correction...I need to put that somewhere...In Dutch, they use alot of double vowels, and call them one...'ij' for one...spoken like a long I...so I just threw one in there!!!

BIG hugs, Kathi

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I agree with Kathi. Much of the change is a required sort of thing. In my case (head/neck followed by lung), my eating habits changed. Eventually (after second cancer) my work habits changed dramatically. When someone is using the vac, I run from room to room to avoid it. I avoid aerosols although I love to start fires and light candles :).

I do not live in two countries as Kathi does, but enjoy everyday of living in the one I'm in. Which gets us to the emotional side of things.

You DO face mortality, probably as you have never done so before, and it DOES have an effect. Some folks become depressed, but many, like Kathi, apparently, experience a rejuvenation, a profound recognition of what all of the minutes and hours and years mean, and they take advantage of it like most others never can.

Because of my eating situation, I'm afraid I can't help with the diet part of your question: I eat whatever will slide down the gullet, and much of it happens to be processed stuff, for better or worse: you do what you gotta do, you know?

And I have resisted the urge to get all spiritual all of a sudden, as it strikes me as hypocritical to find the lord only when you think the end is coming.

But I do find I am much more open to experiences, much more open to ideas, much more open to enlightened opinions, much more open to seeing if my car can top 100MPH (it can :)).

I hope you find what you seek, I hope you learn how to live your life not to extend it but to enjoy it, as Kathi pretty much suggests, I think.

Take care,

Joe

KathiM's picture
KathiM
Posts: 7878
Joined: Aug 2005

August. 2010. Autoban. Germany. 175km/hr...about 109Mph....

....and I was still passed by little VW's and even saw a Bugatti Veyron....for a second...ROFL!

Hugs, Kathi

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

While visiting dtr and her hub in the Netherlands, the son-in-law, myself, and my son took a drive on the Autobahn to get to Michael somebody-or-other's go-cart track (famous Formula One driver over there and can't for life of me remember his last name).

It happens that we were in a fairly heavy snow/sleet storm and when I looked at my son-in-law's odometer, I freaked: it was up near 100! But then, I thought, oh yeah, we are in Germany...those are kilometers.

Only later did my son say "Dad, it's still an American Mustang: those were miles per hour".

:)

Take care, my sweet friend,

Joe

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I've got it -- adjust your life according to your type of cancer and side affects from treatmenst. Bingo! for me too. I had uterine cancer, with treatment of chemo and pelvic external radiation. The radiation was the one that bit me in the bellie area...if know what I mean. Today I eat most any kind of fruit and vegie that I can muster up the courage to try...and it all goes in and comes back out with no issues.

Before my cancer diagnosis I was an avid workout girl and huge runner. Also, ate fairly well,but still partake of the typical fast food joint. After my diagnosis I got scared and read every book I could find or any website which gave me guidance on living a new life after cancer. It wasn't a huge change but have endured many times at Whole Foods with a larger then average checkout tab and the end of any red meat. I've learned to adjust and today it's a way of life.

Just curious to see how many LT survivors do change their way of life, similar to what I've done. Guess you can say, I'm wondering if it's worth it??? Hum...according to many researchers and alternative type docs YES IT'S WORTH IT....add onto that the LT survivors around for 15+ years.

I hope one day I can be part of your "cherished" group. I envision living a long life and do enjoy each moment of my every existence. This cancer truly has been an eye-opener on how life can change in a split second.

Thanksgiving blessings,
Jan

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Never changed a thing. Disgusting eh? I am a 22 year survivor of NHL and have been considered cured years ago, lots of late effects from treatments though.

It isn't about cancer but I don't eat as much red meat but then I really don't like it that much anywho but really I haven't changed anything but probably should have.

I think it's great when people eat better and get more excercise and generally try to reduce their stressors but that's not me. I think if anyone does any or all of those things they make their life better in many different ways but for me I am not one who does well with routines. I think I have kind of given up though with alot of things as many I can not change like side effects of all the meds I am on making it near impossible to lose weight which would be a great thing for me. Still I can lose a little weight but it takes so long and it's so gradual I eventual just say to heck wiht it and order a pizza. lol.

All the more power to those of you who can see your way to improving your health through making smart changes. All the best for even longer survivorships.

Blessings, Bluerose

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

What type of cancer do you have....NHL? Wow 22 year survivor....you're my idol!! So much of this has to do with environments whether it be chemicals in air or hormones in our meats. All we can do is the best we can do and be done...not worth fretting.

What type of treatments did you have and after affects from them? I've had external pelvic radiation and found many issues with bowels and lower back pain. Most of my docs won't do tests on back issues since they claim it's not cancer...not their area of expertise so suggest PCP. Can't seem to avoid any docs now a days can we? Bottomline, no cancer found so I should be happy, which I am.

Jan

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Thanks for your comments. I don't have cancer anymore, the doctors considered it a cure years back so it's behind me, wish the side effects and late effects were behind me too but everything for a reason.

Yup it was Non Hodgkins Lymphoma. Actually I had it twice in the first 2 years and the second time I opted for a bone marrow transplant using my own marrow.

Hard to know what causes cancer I think there are many things that could tip the balance and set it off and for me I think one of the big reasons is stress. I think over the next years to come they will see this more and more - just a feeling I have. I think some contributing things can be environmental for sure but too I think there are possibly genetic issues for some plus lifestyle choices as well. No doubt the environment has an impact on many people with all the pollution and icky stuff in our foods and water.

I had total body radiation so have issues from head to toe but hey you do what you can with what you are given.

Glad to hear that you are doing well with no evidence of cancer. Keep it up. Blessings, Bluerose

ron50's picture
ron50
Posts: 1279
Joined: Nov 2001

I too am considered cured,all that remains is to survive the cure. I have changed very little for better or worse and I am prepared to pay the price. I consider life returning to normal as me returning to my normal life :) ron.

Marcia527's picture
Marcia527
Posts: 2731
Joined: Jul 2006

I didn't change diet but tried to walk on a treadmill an hour a day until I developed Parkinson's and had to stop. You just got to do what you got to do and don't worry about it. I also weigh how enjoyable the change is. Maybe that is why I didn't change diet.

The onc said the Parkinson's was not caused by treatment but you have to wonder. If I carried the gene and something set it off-? I also read the lack of estrogen might trigger it. I had to take pills to suppress the estrogen because of breast cancer.

Sometimes you just got to do the best you can.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Sorry to hear about the Parkinson's diagnosis. This is a disease that hit my father when he was in his later 50's. I watched him progressively give up on life. What I've learned thru research and doc conversations, it's not genetic but due to our environments. If one is dealing closely with chemicals we're more susceptible. Well...dad was a chemical engineer who ran plants that made chemicals for Monsanto. He did this for 40 years...can you imagine.

Also have a good friend who was a chemical engineer who worked inside with the drugs and ended up with cancers. She has breast cancer, kidney and now possibly another one. Most of her docs attribute it to her being around chemicals all day. She has since quit her job, but the damage has been done.

Scary isn't it! Be interesting to see what you find during your chats with docs. Never heard estrogen could be a trigger, but as time goes their research changes.

Jan

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

My two cousins (brothers) have advanced Parkinsons. One is an author and academic, the other is an art dealer. The 3rd brother appears to be unscathed. Older brothers are in their late 60s, early 70s.

Marcia527's picture
Marcia527
Posts: 2731
Joined: Jul 2006

I was 55 when diagnosed with PD. Yes chemicals have something to do with it but I tried to stay away from them. The only time I was exposed was under 18 when I'd help my dad spray his fruit trees. We also drank well water and who knows what was in that.

They really don't know what causes it. Kind of like my cancer. But they think genetics and environment both play a part.

I had a cousin with PD but he was older. In 60's I think.

But even if you have the gene doesn't mean you will get it. There is a lot they don't know.

scouty's picture
scouty
Posts: 1973
Joined: Apr 2004

That's all. Surgery had never been an option to my stage IV rectal cancer at 49 so all I had was chemo and after months of it, I felt like it was killing me so I decided to stop it but knew if I didn't fight in another way I would die. I completely changed my diet and most of my lifestyle, the list of changes is way too long to include here but here I am 6 years since my last chemo treatment and feeling pretty good.

I was considered terminal and on long term disability with my long time employer (25 years) but got kicked off early in the summer since they considered me "too healthy". It was something I never expected years ago but now I see it as just a new good problem to have.

I'm 56 now and have a few pounds to lose but had a nice 2 mile run today (bum knee and all) and hope to be able to continue my successes against the ***** cells.

My yard space dedicated to growing edible stuff has grown greatly over that time as has the time and energy I spend on making it happen. I've learned how to can and store "stuff" by the quart/pint/cup depending on what it is. I actually have a new recipe for my large family for Turkey Day this year......green bean and aparagus salad and it is yummy!!!!

I also think that when you are in surgical remission (all your cancer has been cut out by a surgeon) you approach things a little differently than those that are in non-surgical remission.

Fear drove me to my changes and I still let it. I NEVER want to have to do chemo again and feel as scared as I was.

Lisa P.

inaki's picture
inaki
Posts: 5
Joined: Mar 2011

In February 2010 my urologist informed me that I had an aggressive form of bladder cancer. This news turned my life around. After an initial TUR operation, I decided that my best option was to adopt a completely different daily diet and exercise in accordance with the diet guidelines of a Dutch doctor Cornelis Moerman (1893-1988). The AVL cancer clinic in Amsterdam has respected my choice and demonstrated their willingness to perform a cystoscopy with accompanying tests every 3 months. In my first year living with cancer I have witnessed a complete reversal of my cancer. I am currently (March 4, 2011) cancer free (I prefer to think that my cancer is dormant). It was only last week that I stumbled on the work of Dr. Colin Campbell for the first time and recognised the similarities between the do's and don'ts of the predominantly whole food, plant-based diet and the diet guidelines that Dr. Cornelis Moerman drew up almost 100 years ago. I have one wish (actually I have many) to share here: "Wouldn't it be nice if the medical protocols for cancer treatment were expanded to include nutrition and exercise guidelines for the periods prior to, during and after treatment?"

culka's picture
culka
Posts: 158
Joined: Oct 2009

The China Study, right?
It would be nice including nutrition and exercise, but there is no money in this approach.
Thank god for the internet and all fasting, vegan and raw food webs.

Jonnyfishon
Posts: 1
Joined: May 2012

I think the study is highly flawed. Once again the meat they used was never mentioned. Natural grazing animals(grass feed beef,deer,bug eating chickens ect) are never mentioned. Omega 6 and 3 are the real clues to curing cancer. Corn fed anything is part of the problem. Add toxins and antibiotics and cancer seems to increase 3000% since the industrial revolution. The china study is a great scare tactic in a positive way but very bias and completely flawed study. Stick to organic foods, eliminate sugar, grains, anything that causes excess glucose in the blood. 2 or 3 to one omega six to 3 is crucial to preventing cancer from ever returning. Check Brian Peskins work. He is right on prevention but his diet approach is not complete and he promotes supplements that work but with a lot of effort you could eat foods that supply the same. I have tried everything and have had cancer return every couple of. years. I found my way through my tireless research to remain In remission for 8 years now. There is so much crap out there that who knows what to believe.
Peace and
Luv
Jonny

plantlady2012
Posts: 49
Joined: Dec 2012

Hi Jazzy! I am glad you asked this question, as I wanted to know the same thing! I just finished a whole year of chemo for endometrial cancer. Now I want to know what I need to do to stay healthy! I spent the past year reading about 40 books on cancer recovery topics. When I was first diagnosed, I had a lousy diet, never exercised, was quite debilitated. I did a total lifestyle make over, lost a great deal of weight, replaced soda with green tea, replaced fast food with vegetables, and so on! I don't know if it will help me survive longer, but it is certainly helping me to survive BETTER!

I take hope that many seem to have survived long term without these changes, which indicates to me that the medical treatments are, in fact, effective. However, I have read several books about longterm survivors who made a lot of dietary and lifestyle changes. There is a lot of research about the beneficial effects of various types of foods, like cruciferous vegetables, on cancer recovery. I feel that the dietary changes can't hurt me, can only help me, and support my general overall health. I wouldn't go back to fast food now, even if I was told I had already received a 100% positive cure! My new diet has made me feel so much better!

sweetgammy's picture
sweetgammy
Posts: 20
Joined: Jul 2011

Yes, if you can survive the chemo and radiation and the accompanying problems, you MUST change your diet and add supplements! I was diagnosed with stage 4 oral cancer of the tongue 12 years ago and had 3 recurrences. I follow dr. Keith Brock's cancer diet. Invest in his book " life over cancer" , read and follow it. No meat, no dairy no sugar! They all provide breeding grounds for cancer . Read his book and see all of the proof. Also  reduce inflammation. Your CRP levels should be taken regularly . There are so many supplements that one can take to achieve maximum health. Bloodwork will tell you what you are deficient in. MD Anderson has a great alternative medicine clinic that I attend every 3 months. If you can't go here find a good alternative doctor in your area. One who I kbows about supplements and nutrition. I have seen regular nutritionists and they  know nothing! Ha! I believe that I am a long term survivor because of the diet changes in my life. Hey! Also reduce stress! Use yoga and other forms of meditation and therapy! It works! 

Blessings2U's picture
Blessings2U
Posts: 6
Joined: Aug 2013

I was diagnosed with Stage III ULMS with a very high mitotic count. It's known as a very rare and aggressive cancer. I changed EVERYTHING in my life, and the doctor says my survival is nothing short of miraculous. He says, "Keep doing what you are doing. Your higher power is watching over you. Remarkable, Just Remarkable!" I never returned to a stressful job, changed my diet to all organic and lots of raw Vegan. I juice veggies and drink wheat grass. I take liposomal curcumin and c. I meditate, do energy work and go for acupuncture. Exercise, sunlight.... you get the picture. I learned about The Cancer Personality and how to change my ways of thinking. It has been 4 years and 9 months since my surgery. I never had chemo or radiation. I have never had a recurrence of disease. I started a support website for women with ULMS. I don't know if I can share it here, but if you search Uterine Leiomyosracoma - Integrative and Natural Treatments, you will find it. We also have a Facebook page for discussions about natural methods to build the immune system. Stress is your #1 enemy. Blessings to everyone! 

goty2001
Posts: 71
Joined: Jul 2012

but everything's relative - I'm stage IV and  I've exceeded by more than double my original prognosis ... and so throw me out if I'm gate-crashing

 

I've have made changes similar to you UBlessing2U ... eliminated meat & most dairy, cut down sugar, and I'm juicing wheatgrass and taking 8-10G of lypospherc vitamin C every day. Maintained a couple of vices ... I like to 'celebrate' as frequently as possible, and am not giving any credit or thanks to god (he/she's been totally eliminated with the meat)

 

Am on Herceptin - targeted therapy - I'm fortunate to be a candidfate for that.

 

Tumor didn't register on most recent scan.  Not gone perhaps, but even I'm gobsmacked.  I put it down 85% to the medicine ... but the nutrition 15% contribution really makes a difference in my opinion....

Viking51's picture
Viking51
Posts: 21
Joined: Sep 2013

Juicing, Oxygen Therapy, Accupuncture, switching to organic products and joining a shopping club, switching to healthy foods, not ignoring your body, taking vitamins for your health. Most importantly losing weight and trying your best to eliminate stress

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