where can I find the answer?

Agent99

where can I find a good I depth article About what chemo /radiation did to my body? I mean metabolically, physically. 1 year after treatment my body is so different I don't understand how to fix it. It's more than just needing to exercise ,eat right and be persistent. I lost all muscle tone, endurance, even my tears are different. I read in an article somewhere that chemo ages a body 15 years and I am a living example of that. I need to understand at a deeper level what treatment did to me and how I can fix it. I have been eating pretty darn clean, I'm very active but i am head to toe cellulite, I swear I even have cellulite on my feet and I wasn't that way before treatment. I'm 5'6" and weigh 130 not obese. It's like chemo turned my muscle to jelly. Anyone else understand what I am trying to figure out? Also I don't understand this belly bloat I never had it before and now I look 6 months pregnant. No change in diet seems to affect it at all...frustrated

badger

hi Agent99, I'm six years out and still struggling. I didn't have rads but did chemo and ballooned up to 200 lbs. It took me five years to get back to pre-chemo weight. Still working on those last stubborn ten lbs I needed to lose before dx. Five years of tamox and now anastrozole (generic Arimidex) add to the challenge. I don't have answers but invite you to join us on the Let's Post Our Daily Exercise thread here in the Fitness forum. We're all ages, stages and fitness levels. Best wishes!

Agent99

thank you!😀 It seems as though there hasn't been a lot of research, or real data about after treatment. It seems the Drs just stop as soon as they can say you have no evidence of diseas

BarredOwl

Hi Agent99:

This web page from Dana-Farber is very broad in focus, but acknowledges what you are experiencing for breast cancer patients (emphasis added by me):

http://www.dana-farber.org/For-Adult-Cancer-Survivors/Caring-For-Yourself-After-Cancer/Your-Body-After-Treatment.aspx

"Weight changes

Research shows that some cancer survivors who have had certain kinds of chemotherapy or who have taken certain medicines have problems with weight gain, and the added pounds stay on even when treatment ends. Breast cancer survivors who have had certain types of chemotherapy gain weight in a different way: they may lose muscle and gain fat tissue. Unfortunately, the usual ways people try to lose weight may not work for them."

Unfortunately, they did not provide any literature citations or added detail.

I did not have chemotherapy, but I saw surgical healing changes as late as two years post-surgery. Since the surgery, I noticed an increased susceptibility to injury (e.g., from exercise, from wrong moves). Even now, I feel like my healing systems are continuing to be taxed. I listen very closely to my body if it complains. I learned to increase my activity in small increments (no more than 10% increase), engage in new activities with a slow ramp up, and to try and maintain activity consistently, because I seem to de-condition faster now too. I have noticed strength improvements, but in a longer time-frame than pre-surgery.

BarredOwl

dblomom

Agent99,
Thank you for posting about this. I wish there was more information out there. I feel like it is a dirty little secret that no one wants to talk about! I was diagnosed 1 week prior to my 40th birthday in Jan., 2015. I had a double mastectomy, 8 rounds of chemo and reconstruction. Since finishing chemo (June, 2015), I have put on 15 or so lbs. I am freaking out over all of it. I gained a little during chemo, but was told it was from the steroids and that it would come off after. I am at the heaviest I have ever been (except pregnancy). Speaking of pregnancy, that is what I feel like...every week, a little more creeps on. It would make more sense to me except I am on a very strict 1200 calorie/day clean intake and I exercise 6 days/week (cycling, walking 4 miles/ day, weight training). I can't stand the sight of myself. I look and feel pregnant. Had I known I would be dealing with all of this, I might've considered foregoing chemo. I am realizing just how vain of a person I am! None of my clothes fit and I refuse to buy anything bigger. Even though I am tracking calories and eating a very clean diet, I am still gaining weight. What do we do? I was always very in touch with my body before, if I put on a few lbs, I knew exactly what I needed to do to take it off. I am so pissed at my body. I feel like my entire "being" was removed from myself and put into someone else's body. I have a hair"cut" that I do not like, a body that won't cooperate and I want to eat some darn pizza!!!

dragonsnake

I'm not a doctor or medical professional, but I think  that the problem is that chemo damages the lining of the digestive tract. Digestive tract is very sensitive, and many things can change the permeability of the gut lining. Also all anticancer treatments most  change the gut flora. As a consequence, food is not digested properly, and partially broken molecules enter bloodstream . The condition is called the leaky gut syndrome.  I faced this after taking a course of antibiotics to treat h.pylori. I was a mess (shaking uncontrollably, like from a severe panic attack that never stops;   nothing was digested and just went through;  cramping  was so severe I could not function; I was so bloated that I looked pregnant, and it made me hard to move, nothing fit; something happened to my mind - I was unable to concentrate, could not function at a level that required for my job,  even  my preference for colors changed: I started buying colorful things and dressing up like a slob;   ended up at shrink's, on strong sedatives);  conventional medicine could not help.

I had  most symptoms of a colitis, so I researched what diet is recommended for patients with Crohn's and ulcerative colitis: it is a specific carbohydrate diet. Later I figured out that it also helps some kids with  autism. Here is the link:

http://www.breakingtheviciouscycle.info/

So I started it three years ago, and was slowly healing.

The process is  not fast. The diet is very restrictive, but it helps me. I lost weight, severe bloating subsided in a year or two.

Eating clean is not enough, you have to help your gut to digest food by not making your digestive system to work hard. Complex carbs are very difficult for the damaged gut to break down, so no sugars, no starches, and absolutely no gluten covered in starches, as in wheat ,are allowed. Re-populating the intestines with beneficial bacteria is also a goal of the diet. They say that children have to stick to the diet at least for 2 years, while the adults - for about 7, or indefinitely.

Those I my thoughts on fixing the damage from chemo and rads.

dblomom

Wow, @dragonsnake, this is very interesting to me, thank you for sharing it. I will definitely be doing some reading over the next few days! Your summary makes sense and at this point, I am open to anything that would be a "healthy" change in the right direction. My husband, although extremely patient, kind and supportive, suggests that I am not working out "hard" enough. Those around me don't really understand how one can have gone through cancer treatments and GAIN weight (I think the common thought is that you turn into a skeleton from the chemo and puking your guts up, neither of which happened to me). I am not looking for an instant fix, because I know there is no such thing, but anything to put me in the right direction makes me a bit emotional and excited. So, thank you! ♥

Englishmummy

Dblo - I did not have chemo either but I did want to jump in and suggested a couple of things as I just turned 42 this year (dx 1 week prior to 41) and I would feel exactly as you do if I were in your shoes. I am not a member of the medical profession but I have an avid interest in diet and exercise. I am not sure how you came to a 1200 calorie per day diet (yourself, Dr recommended, etc) but (just a suggestion) is it possible for this to be too low? Whilst weight loss is at least 75% diet and 25% exercise (make sure your hubby know that , not providing enough calories can cause your metabolic rate to slow and muscle mass to further deplete. If you are working out, 1200 is a very low caloric intake to keep with over a sustained period of time. Plus, you are still healing in many ways, a year is not very long for the process you have endured and your body is likely trying to heal AND cope with the demands of working out... Are you working out too much? 30 minutes of breaking a sweat 5 times a week is more than even for an average person, along with keeping your activity level up during the day. Another suggestion is cycling a low carb diet with 'break' days - eating low carb 5 days per week and enjoying that pizza and other higher carb foods for 2 days per week? I have read that chemo may cause adrenal fatigue, something many suffer from prior to dx. Working out too much fuels that fatigue and has the reverse effect. There is a lot of information on adrenal fatigue or I'd be glad to PM you some.

As I said, I did not have chemo but I found this recipe http://www.rebeccakatz.com/magic-mineral-broth

and have been drinking it weekly since my dx: all through my surgery through to today. I find it very soothing and believe it to be great for the microbes in the gut. I eat lots of prebiotic and probiotic foods, I believe that to be hugely beneficial to health just as Dragonsnake said.

Good Luck and I hope you keep us posted on your progress. What works, what doesn't.

Waving @ Barred Owl

dragonsnake

Dblomom, I forgot to mention that I started having some digestive issues even before taking antibiotics. The symptoms were also like a colitis, but milder, and without the mental component. I was walking 6 to 10 miles every day at that time. I desperately wanted to loose weight, but I was slowly gaining it despite all the effort.  I wasn't eating much either, but my gut gradually started rejecting foods that I was eating all my life before:  first just the fried foods , then  ice cream,  then mashed potatoes (a staple in our house), oatmeal, buckweat, etc., but because you do  not eat such foods alone, and the reaction may be delayed by 48 to 72 hours, it was difficult to figure out the culprit. Any fruit caused explosive diarrhea. At that point I went to my PCP, and he made a test for h.pylori. Everything collapsed   after taking  antibiotics.  I lost 15 pounds during the  first week I was taking the antibiotics, and  I could hardly walk. I could not leave the house in a fear that I would not make it to the toilet in time, although, technically, I needed to go only 2-3 times a day.  I was not been able to work for one month, and was working part time for another half year afterwards. I started looking for diets when the GI doc made a gastroscopy and colonoscopy, found nothing, and told me  that I  was making things up.

dblomom

Englishmummy, thank you for sharing that. I have signed up for the emails. ;-) My husband (who is not a medical professional but a very "fit" person) does think I am not eating enough calories. I guess I was just wanting to jump-start the scale in the other direction! And I came about that number based on My Fitness Pal's calculation, I am tracking all of my calories (and exercise). MFP has been really helpful before and I have seen great results once I start tracking, but I am going on week 4 and...I have actually gained a couple of lbs. I see my MO on Aug 9 and am probably going to have a melt down on her. I am going to request she refer me to a dietitian b/c I feel like I am falling without a parachute!

I also started Plexus 4 weeks ago (with my MO ok). I have a good friend that has had really good results with it but for me, although I am not losing weight on it, it has helped in other ways. My energy seems a bit better, but I also just went off of my Effexor (anti anxiety, again with my MO ok) so that may help w/ my energy as well. The Plexus has helped me (ahem) get things "moving" in the gut/bowels and it is costing me a fortune but I have never been this regular in my adult life! :-)

I didn't mean to hijack this post, but am so grateful for the replies and suggestions. Thank you!!!

BarredOwl

Hi Englishmummy!

There may be extra challenges for those who had chemo or on endocrine therapy. Good question about a 1200 calorie diet, which may slow metabolism and cause loss of muscle mass. Also, sufficient protein is needed for healing and for maintaining muscle mass. The Recommended Dietary Allowance (RDA) for protein is a 0.8 grams of protein per kilogram (kg) of body weight, which is the minimum amount a healthy person needs to meet nutritional requirements to avoid problems. Women can multiply their weight in pounds by 0.36 to figure out their RDA for protein, or use this online calculator from USDA.

BarredOwl