WEIGHT GAIN NOT BAD FOR YOU?: In the middle of... - CLL Support

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WEIGHT GAIN NOT BAD FOR YOU?

wizzard166 profile image
15 Replies

In the middle of another Post I made the other day about my Spleen and lymph node growth in the abdomen, I raised a side bar question that likely went unseen about purposely gaining weight. It had to do with my Wife nagging me not to lose weight, and instead purposely trying to put more on. Her concern for me had to do with possible starting of treatment in the near future, and a worry that treatment and disease progression will make me lose weight. Her idea was that if I pump up the weight now, it will help me survive better the loss of weight from starting treatment.

I personally thought she wasn't making sense, because I'd always read that staying in better shape and not having excess stomach fat was better for our chances with our disease. I haven't argued with her however, to keep the peace, but I did mention I wasn't too happy that I recently gained around five pounds. She again told me she believes that the weight will help me be ready for the loss of weight with treatment. I've been meaning therefore to post and ask if we actually lose weight when we start treatment. I know we can lose weight if our illness is getting worse.

Then this past week I saw an article in my newsfeed on my computer, and it stunned me. It actually was suggesting that medical studies are now showing that losing weight in our older age group was bad for longevity. I thought this was insane, and maybe a joke, but I read the article and was stunned. Here is the link to the article from CNN

cnn.com/2023/04/10/health/w...

Carl

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wizzard166 profile image
wizzard166
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15 Replies
SofiaDeo profile image
SofiaDeo

I saw that in the medical article, but not the news report, it was remarked that one needs to look at a number of parameters surrounding/associted with any weight loss. It's not necessarily Any and All weight loss; *why* is there weight loss may mean more than the simple fact of it. Addressing the *why* may turn out to be the root cause of increased mortalities.

"Waist circumference (WC) may be a better measure than body weight to estimate all-cause mortality, CVD mortality, and premature mortality because it captures the negative outcomes of abdominal adiposity,4 which may be associated with an enhanced release of inflammatory mediators.5 However, data on the relative significance of changes in weight, WC, and cause-specific mortality have not been established in an aging population, to our knowledge."

In the Discussion section:

"A likely explanation for these findings is that weight loss can be an early prodromal indicator of the presence of various life-shortening diseases.25,26 Although it is widely acknowledged that weight loss may precede a diagnosis of cancer, in our study, weight loss also preceded an increased mortality from CVD and other causes. The latter may include deaths from trauma, dementia, Parkinson disease, and other less common causes.27"

The numbers in the above paragraphs are references the paper linked to various statements.

And there was some discussion of weight loss regarding how quickly it happened, and the extent of it. So IMO unless there is more data, a slow and steady attempt to change bodyfat and muscle mass near optimal levels is likely to help more than hurt.

As well as some study limitations:

"This study also has some limitations. The principal limitation is the inability to differentiate intended vs unintended weight loss, although bariatric surgery, the only likely intervention proven capable of intended long-term sustained weight loss,32 is rarely undertaken in this age group. Furthermore, exploring whether change in activity level and diet quality between baseline and annual visit 2 had any association with outcomes was not possible because they were not recorded in this study. Residual confounding, such as intended weight loss or change in activity or diet, cannot be excluded."

So one really can't say that someone who mindfully lost some bodyfat weight while building muscle to optimize bodyfat ratios is actually affecting their lifespan negatively. Or if any weight loss from a dietary change contributed At All to the mortality. Radical diets lacking in certain nutrients may be contributing, but this study didn't address any of that.

The conclusion IMO was, "look into any weight loss, it may be an early indicator of a disease process affecting mortality".

"The clinical implication of the findings of this cohort study is that physicians should be aware of the significant association with mortality of even relatively minor weight loss (≥5%), especially among older men. The risk extends beyond an increased risk of cancer, extending to CVD and a range of other life-limiting conditions. Further research will be needed to determine more precisely the association between weight loss and the onset of fatal diseases and whether clinical or laboratory investigations can identify individuals for whom early intervention may be effective."

jamanetwork.com/journals/ja...

I am unhappy that the new article had a picture of someone with a 38" waist. To me, it was implying that someone with a 38 inch waist might be in the "increased mortality" group if they tried to lose bodyfat. "Fast weight loss" in obese individuals can definitely stress organ systems, especially if there isn't any increase in muscle building activity, let alone if there are other comorbidities. But since many in medicine are wondering/testing to see if the "abdominal fat" measurement is clinically significant, anything that appears to suggest people with these abnormal ratios should stop trying to follow doctors advice at decreasing it, is awful IMO.

wizzard166 profile image
wizzard166 in reply to SofiaDeo

When I read quickly through the article again this Morning, I saw that they did not weed our those who lost weight without intending to do so. In the early part of the article they did say they weeded out those with chronic illnesses etc, but those are the ones they knew of. It means that the group in the study could have had a good number of people who developed cancers and other illnesses that could cause weight loss that was unintentional. I think that likely distorts the study too much to take seriously; then again, I'm not sure of my conclusion.

Carl

SofiaDeo profile image
SofiaDeo in reply to wizzard166

I think the study is fine, IMO it's the CNN news person presentation lolol. If it makes some docs note when patients are losing weight, and make sure it's intentional, or possibly point to early problems like with cancer or Alzheimer's. Or discover someone has changed to a diet lacking something they really need.

Newdawn profile image
NewdawnAdministrator

Being a simple soul I look at this experientially and obviously ask the question, what is the starting point? I’ve lost so many relatives and friends over the decades and have observed the impact of weight and its ‘buffering’ impact with interest. My clear observation is that some reserves can most certainly be beneficial for a long health fight but starting at a very overweight level will most certainly have already created the co-morbidities that weaken any battle. The article recognises this.

I sense you’re not particularly overweight to start with Carl so can appreciate your good wife’s concerns. However, there’s clear evidence of how severe Covid infection disproportionately impacted more obese patients and purely from a non scientific point of view, higher levels of inflammation are likely to be more evident.

We have a saying in my part of the world when someone is fading that ‘they’re going into a smaller space’. It happens naturally as we age and I know for a fact that spinal stenosis has taken 1.5 inches off my height! 😳

In terms of CLL and any impending treatment, I’d advise anyone to try and improve their fitness levels. If they are clearly very overweight then it makes sense to try and remedy this. However, reduced appetite and nausea can impact weight on treatment (it didn’t with me however) but certain meds can actually cause weight gain. I experienced this with Ibrutinib. To me it’s more about a sense of personal fitness and feeling more prepared for the fray.

I was never advised to lose weight on starting treatment even though I clearly needed to. I knew it was going to take a very long time for me to ever fade away and that’s got to be a positive. My incredibly slim sister in law lost her cancer fight rapidly because she had few reserves and any weight loss at all compromised her system 😔

The findings of the article make sense to me but again I think it depends on the starting point. It should never be an excuse to remain unhealthily overweight.

Regards,

Newdawn

CycleWonder profile image
CycleWonder

Carl,

There was a correlation between weight loss and dying within a set period of time but this does mean losing weight is causing any deaths. More likely from my experience is unintended weight loss may be an indicator of disease, perhaps as of yet undiagnosed.

Cancer treatments for other cancers may be very hard on people. I had a friend undergo treatment for throat cancer. He had daily radiation treatments on his throat but he was determined to not have a gastric tube during his treatment. It was a struggle to keep his weight up as swallowing was very painful for him. I found he could eat old fashioned frozen custard. He could swallow it and the coldness helped soothe his throat pain. It was made with eggs so had enough nutrition to keep him going for the last few weeks. He survived and is doing well.

Our CLL is not often treated with chemo or radiation anymore. As I’ve stated, my side effects from taking Pitrobrutinib is a mild headache two hours after taking my daily dose.

Getting in better shape is helpful before starting treatment. My CLL specialist told me his patients that exercise handle side effects better. The biggest benefits from exercise are the first two hours you exercise each week. And the best exercise to undertake is 1) one that you will do, and 2) preferably outdoors to give you the extra mental boost of being around green plants.

LeoPa profile image
LeoPa

That's is a well explained article. It's not that weight loss causes an increase in mortality. But if there is an unexpected and unexplained weight loss there might be something going on that might affect the expected lifespan and needs investigation. These two things just have a common cause that is underlying. And it does not at all mean that gaining weight extends lifespan. They didn't check very important things like quality of nutrition. Neither did they distinguish between intentional and unintentional weight loss. And most importantly I do not see any differentiation in the makeup of the lost weight. We know that losing muscle mass as we age is detrimental. The goal should be to not lose muscle mass. But if someone intentionally loses adipose tissue while keeping his muscle mass intact, that is good.

Gampo profile image
Gampo

Hi, there are some articles on this site about gaining weight whilst on Acalabrutinib - much against intentions. It’s not uncommon to lose weight whilst on W&W, especially if an enlarging spleen makes your stomach feel like you’ve eaten a massive meal when you’ve only had a piece of fruit. Some notice weight loss in the first month of treatment but that can be linked to the spleen reducing in size as the treatment gets to work. Like others have already said, exercise is so important to boost your physical and mental strength. Where food is concerned, healthy food that focuses on fresh ingredients and plenty of veg and fruit is naturally going to give our bodies help as we struggle with energy etc. Good luck.

Poodle2 profile image
Poodle2

Your wife's approach makes me giggle, bless her 🙂I did loose a lot of weight when I started treatment but that was the last thing everyone was worried about. Yes, I didn't look particularly good at that point as I was not "big" to begin with...my husband thought I was too skinny and my mum said that was the first time I looked sick (she only told me now, 11 months later 🙂)...but guess what, I'm in cycle 11 and I put all that weight I lost back on and even 2kg more than my usual weight. If I were you, I would try to stay fit and healthy and I definitely wouldn't try to "plump up", I can't see the benefits of that.

LeoPa profile image
LeoPa

If you want to gain weight intentionally in a healthy way, eat some meat (animal protein, whichever kind, your choice) along with coconut oil (saturated hence it does not oxidize, contains no cholesterol, lots of energy, about 20% are MCTs which are not digested but absorbed straight through the portal vein and give instant energy). The animal proteins will support your muscle mass while the coconut oil will give you storable energy. Preferably do not eat any carbs alongside this. And eat both the meat and the coconut oil at room temperature, that is let the hot stuff cool before you eat it. Warm oils could cause diarrhea in people unused to consuming them.

I unintentionally lost a lot of weight in a short time. 25KG in a few weeks. And the doctors were horrified! One of the GPs in the practice I go to was phoning my cancer centre telling my consultant that I needed "immediate admission" because of my weight loss. and phone me daily to see if had lost any more and had I eaten properly. And although my consultant had an idea why I was losing the weight and didnt thin it was CLL related (I didnt either), this doc was on my back for ages, driving me crazy.

Ladylin151 profile image
Ladylin151

I am only one person observing one person, but I would tend to side with your wife. 1.) I wouldn't try to treat two problems at the same time. It confounds your symptoms and data. So unless you are morbidly obese, this is not the time to try to adjust. 2.) A huge portion of the things people do to lose weight either downgrades their nutrition or dehydrates them. This would be a poor direction to take prior to and during treatment. ( Drink water as directed, more is not necessarily more!) 3.) Your treatment will be killing the "bad" cells in your body. Those cells will need to be broken down and moved out. And then, new healthy cells will have to be made to replace them. You will need all your systems to be in prime operating condition to do this and to have the best base materials to rebuild. You want LOTS of basic proteins and nutrients to rebuild with. Your body will rob your muscles and organs if it cannot find what it needs. So if I were your wife, I would tell you to ignore your weight, but move in the direction of building muscle and being well nourished. Think about each bite of food adding value to your systems. Put in plenty of quality building blocks! And best of luck!

BeckyLUSA profile image
BeckyLUSA

I will post my anecdotal account. When diagnosed, I was overweight, not a lot, and I carried it well, so did not “look” bad but a good 30 lbs over weight. The first thing out of my oncologist’s mouth was to not diet any more. He said “try not to gain any more but don’t worry about losing it. It will come off. I lost 20 lbs without trying due to enlarged lymph nodes and spleen. Once I started treatment I lost another 10. So for me, the advice was good. Had I continued to diet, I would have probably been worse off. As it stands, the “extra” weight kept me from losing too much. Just my story.

SeymourB profile image
SeymourB

wizzard166 -

I wonder why papers like this are even accepted for publication. The paper contributes very little to what is already known. They took some existing data, and mined it by doing some math that doesn't reveal anything new to me. Maybe the JAMA editor published it because they thought it might finally stimulate someone else to submit a more useful paper. Maybe someone else will do a similar mining study of a different population, and another can try to do a metanalysis. At each stage, the caveats grow. The study used an existing database that had already gathered age and weight vital stats, and whose population was "without evident cardiovascular disease (CVD), dementia, physical disability, or life-limiting chronic illness."

The obvious thing everyone here wants to know is whether trying to lose weight is advisable for people with our comorbidities. Designing a study to capture that is apparently a lot harder than we imagine, or we'd have seen it by now. We need to capture the intent to lose weight. We need to have a ready population to poll - that seems the hardest part. We cannot simply ask for volunteers, because that induces a selection bias. The best such studies are run by large health agencies like NHS.

One might think that simply asking the question, "Are you trying to lose weight?" is enough. And maybe it is. But if we're setting up a study that asks questions, we can certainly ask a few more, like "Do you have a major health problem that's prompting your desire to lose weight?", or "How long have you been trying to lose weight?", and "Are you following a specific diet?", and finally, "How much weight have you lost?" If we ask too many questions, people walk away in the middle - and those people may be important to our conclusions.

We need to match demographics and comorbidities. Then compare the people who answered "Yes" with those answering "No."

The trick is in the wording of the questions. I'm not a skilled poll writer. To be honest, many people THINK they are, but ambiguities are in the eye of the beholder. For international studies, nuances of translation may be a problem.

How long a period of dieting is good enough to make a difference? A month? A year?

=seymour=

Pin57 profile image
Pin57

Hi Wizzard - Your wife must of been texting with mine… as I get the “you need to add weight talk (and key added words n add more muscle!)” from my wife too! Interesting article, post, article and as always great replies from the many wise ones on this forum.

Been skinny all my life, 135lbs from high school days to now (go figure how m, can that be?). I must have a built in chute to my exit hole! Lol.

Regarding adding weight, my CLL doc second others points that it’s more important to add muscle for our Big C battles. Indirectly, that’ll add “good weight”.

LeoPa will love to read my next suggestion that …. working on getting an appropriate amount of protein, through diet via red meat eating is advice that both my wife n I have had from our Big C docs.

We are buying a new bbq grill and a new smoker, read-meat city eating in our family! Reason we r buying that cooking equipment is we loss both in our recent house fire (crapola eh?… we both get cancer at the same time in early retirement, then our house burns up…. what the heck?). Good news is nobody died, n our pets 🐶s survived the fire too! 🙂. “Stuff” like grills are replaceable, …. but people n pets are not replaceable! I digress.

So back to your post. It’s not about randomly plumping up body mass weight, it’s about adding muscle. Wife n I happen to be skinny mates, long time athletes with fortunately 0 other co-morbidities. That maybe the biggest factor regarding length of one’s life?

I’m not buying the adding weight randomly idea. Just an opinion.

Anyways, stay your course “wife is right!”, n you are a very wise Wizard to avoid the arguing trap. Eat a few steaks, pump some iron, it’ll add protein, muscle n “good weight”. Plus… as a bonus, it’ll make your wife happy 😃!

Good luck Wizzard … n hope you will live long to be that “baseball closer” stage of life that you yearn to accomplish. I’ll never forget your post n words on that goal. It was inspiring to me. Take care Carl.

Danny

carolly profile image
carolly

Personal view only… I lost 15 kg rapidly with a 22 cm spleen and abdominal nodes just before treatment. Gained weight nicely once I started treatment! We are all different. Good luck x

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