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Weight Gain

Nellasing
Posts: 529
Joined: Oct 2016

Hi all, I looked and didn't really find any big conversations about weight gain.  Is anyone willing to share with me if after frontline treatment you have found yourself gaining weight?  For reasons you know of or unexplained?  What did you do about it- ie eat less, exercise, whatever?  Did anyone experience eating well, drinking enough water, and exercising and still the weight keeps packing on? 

Obviously I am having trouble.  I am up 20 lbs from April- then I lost 13 lbs during treatment and now am up 31 lbs from end of chemo in Sept!!!  I am eating organic, getting protein (veggie) & beans, no dairy, drinking 1/2 my weight in ounces water, avg 6,000 steps a day when before I could hardly go 1,000.  I know my mucle tone has dropped really badly but still my fitbit says I am avg. 2,500 calorie burn daily and I'm only taking in 1,200 to maybe 1,500 and that's an educated guess.  I should be seeing some progress but I just feel bloated especially middle from chest to butt- ugh!  Started in size 13 and now size 16 are getting tight.  I am freaking out but want to stop that if this is just something normal.  My gyn/onc says she's seen women gain after hysterectomy and chemo.  BUT DOES IT STOP?  How do I get it to go the other way?!
Also, I am aching/pain around my ribs front and back and the front of my hip bones.  Is it from fluid buildup or weight gain?  I've had 2 ultrasounds 1reg and one tv that say everything is good with liver, kidneys, gallbladder, spleen, abdominal= normal appearing with radical hysterectomy.  I've had no radiation.

Any info. is good- I will be seeing my MD Jan 30 and my gyn/onc Feb 1st.   I'd like some feedback from you smart ladies.

Thanks much!  (((HUGS)))

MAbound
Posts: 944
Joined: Jun 2016

I lost 30# during treatment but have stopped losing weight since finishing radiation. I'm worried though because I'm going to be starting Megace soon which is supposed stimulate appetite and potentially cause fluid retention, so I feel your pain. I'd like to lose another 30# rather than gain anything back. The only thing I can think of is to maybe try something like interval dieting to maybe get your body out of conservation mode. Your body may be so used to the consistent lower calorie count that it's slowed your metabolism to the point that you're gaining rather than losing weight. You may need to vary your calorie count to get it out of that rut, but I don't know for sure how you get started on something like this, but it might be something to look into. It's a never ending battle, eh?

 

Nellasing
Posts: 529
Joined: Oct 2016

I feel sore all over- I wonder about lymph fluid from the nodes that were removed- perhaps our systems aren't draining correctly- I've heard about ladies with different problems having great fluctuations in weight with fluid.

I have been trying the intermittent fasting- is that what you are talking about?  I've tried about everything I can think of.  I do have a piece of ezekiel sprouted bread from time to time.  I don't know.  I just don't want to keep gaining and the pain all over but especially in my ribs and hips is a real downer!

I am thinking that if this doesn't resolve soon I am going to request a CT just to be certain that nothing else is going on.  My Dr. is one that doesn't believe in them unless there is a reason.  

Thanks much for your response and yes, never ending..... (((HUGS)))

Kaleena's picture
Kaleena
Posts: 1980
Joined: Nov 2009

I gained 30 pounds after my treatment of carbo/gemzar.   I was eating healthy.  I brought it up with my doctor and was told "American's eat too much".   But I really wasn't.   It fact it was the most I ever weighed.  I kept that for about 3 years slowly inching up and then I had a recurrence.  After that surgery, I ended up losing 30+ pounds and it stayed off for several years.   In the past year, it has been coming back on and I keep asking the doctors but they don't see it as a problem.   I haven't changed my way of eating (eating healthy foods).   I am almost back to my weight before my last recurrence so it makes me concerned a little.

I was even hospitalized last year for pancreatitis for 4 days (you can only have IV) and I didn't lose any weight at all.  Now I am looking into whether or not it can be a gluten thing.   I even had tests for my thyroid but those were negative.   I see a GI doctor next Friday as I have been having a lot of GI issues.   I'll let you know what happens.

Also, I feel bloated and I even showed them that it was a lower bloat but high right under my ribs to my belly button.  It looks odd but I have had many surgeries and I do have a mess too from the major surgery for the recurrence.

 

Nellasing
Posts: 529
Joined: Oct 2016

One of the contributors of the cancer and any recurrence is belly fat- you'd think they would be way more concerned.  I'm so sorry for everything you've been through!  I also am not eating guten not because I know anything but out of and abundance of caution.

I'll be thinking of you as you see your GI dr. next Fri.  I just think it's a connection- I mean you were on IV and still didn't lose any weight?!  I got my fitbit for Christmas and am very goal driven so I've been really working at this and not one ounce - yet when I was losing my 250 lbs over the last almost 5 years it was predictable and I didn't do 1/2 the things I am doing now- crazy!

As a matter of fact- before I was dx I went back on that program and didn't lose anything- I think once the cancer starts running the show your body changes????   I'm just wondering if it will ever come back on line after treatment... I wouldn't go back on program because I stay away from pre-pkg foods so trying to eat similar to the plan but on my own.  Anyway, I am rambling.

Thank you to all of you who have responded!  I hope we'll hear from others.  (((HUGS)))

Kaleena's picture
Kaleena
Posts: 1980
Joined: Nov 2009

Well I saw the GI on Friday.  He was a very nice doctor!  He was very thorough and took time to listen to me and then indicated the following:  He believes that I might have something called pancreatic divisium.  This is actually a birth defect where the pancreatic duct stays divided instead of forming one duct and if one of those ducts gets block it could cause the problems I am having.   He indicated that no matter what though he wants to remove my gallbladder.  First though I have to get an EUS and a colonoscopy and then have my gallbladder removed.

Finally, he did blood work for genetics:  PSS1, SPINK1, Cystic Fibrosis Gene, ANA, and Tryglicerides.   A high trygliceride can cause pancreatitis.   I don't know what the turnaround time is for those tests.  However, I did get my tryglicerides test back yesterday and it was 169 (borderline high).   I'll keep you informed what else takes place.

On another note, I weighed in at the most weight I have ever been.  14 pounds up since June.

((Hugs)))

Kathy

Nellasing
Posts: 529
Joined: Oct 2016

That is good information to have.  I am glad it sounds like the Dr. is at least looking into things and taking your seriously.  It's a bummer that you have to have your gallbladder out- did you have an ultrasound to see if it was full of stones or ???   Good news on the genetic tests- hope that brings you more answers.

Hate it that you were up 14 lbs.  I go see a new Dr. tomorrow due to new ins. and getting established and I intend to bring all my info and see if this gal is willing to get to the bottom of things or if she's seen anything like it before.  I am still going at it each day- just doing the right things and hoping my body finally kicks in gear.

Please let us know how things go as you go along- sending you such good thoughts and prayers  (((HUGS)))

Kaleena's picture
Kaleena
Posts: 1980
Joined: Nov 2009

My gallbladder was fine the last time I had it check - no stones, etc. but he wants it out anyway.  I had a nurse once who said she requested her gallbladder be taken out because she was having similar problems.  They kept telling her no but finally they did.  She also had gained weight.  After they took out her gallbladder she lost her weight and kept it off.

I have to get my ultrasound first (EUS).  I am trying to schedule it for Feb 9th.   I'll let you know.   Thanks for your thoughts and prayers.

Kathy

Tethys41's picture
Tethys41
Posts: 1371
Joined: Sep 2010

Do you have thyroid issues?  I have seen that many women who were treated with carbo/taxol for ovarian cancer end up with Hashimoto's, or autoimmunity of the thyroid.  Have you had a thyroid test since treatment?

Nellasing
Posts: 529
Joined: Oct 2016

One of the first tests was a thyroid panel - then a hormone panel both of those turned out good.  But that's good information to have! 

CheeseQueen57's picture
CheeseQueen57
Posts: 852
Joined: Feb 2016

I would suggest you consult a dietitian. Many insurances will pay for the service. 

Nellasing
Posts: 529
Joined: Oct 2016

we went over everything, as I was wondering about going full ketogenic diet, but she felt that what I am doing is sufficient- there was nothing that was a red flag for why this is happening.  that's why I went in for the last ultra sound to rule out gallbladder, liver, pancreas problems.... we may be trying something to move lymph and see if that changes things????  just really want to know- am I alone in this???  no one else is struggling or ever has?????

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1584
Joined: Jun 2015

Nella, Lucky for me I didn't have this issue. But, I wanted to let you know that I have heard of other women that do experience weight gain post chemo.

I'm a huge fan of Fitbit. Like you, I am goal driven and that little tool pushes me to meet my daily goals. I have been using it since March of last year. :-)

I hope you find answers to your issue. That has to be frustrating knowing you are eating healthy and exercising!

Love and Hugs,

Cindi

 

 

TinyHouseSurvivor
Posts: 6
Joined: Jan 2017

i have kept my weight controlled using a primal diet which is a modified paleo diet for those of us living in the real world. Check out marksdailyapple.com for a good introduction to the concepts. He also has go info on exercise and sleep.

Nellasing
Posts: 529
Joined: Oct 2016

I do not eat any meat- that is making it difficult to get protein.  Working on it but I am finding that this is not unusual after chemo/steriods and the muscle loss etc.   Keep the comments and ideas coming- appreciate it!  (((HUGS)))

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Do you like yogurt? I eat an organic plain whole-milk greek yogurt that has 23 grams of protein per cup. I can easily eat two cups at a sitting so that's a pretty good amount of protein for a meal. Kim

Nellasing
Posts: 529
Joined: Oct 2016

That is a wonderful suggestion also but I am unfortunately also doing no dairy- my diet is mostly just organic veggies, a little fruit and beans where I am getting my protein because I am vegan.  Thank you SO MUCH for sharing that as it will no doubt help someone!  (((HUGS)))

Nellasing
Posts: 529
Joined: Oct 2016

I am now up to 10,000+ steps a day and the weight gain is continuing Yell  I am beyond frustrated and in re-reading the above I realized that I had forgotten to mention that I have also been having heart palpitations which feel very much like anxiety but they can go on and on for hours when I am not anxious about anything.  I had that ultra sound, a chest x-ray, an ekg and an echo... my BP has been going haywire sometimes normal and other times very high.  This week I saw a cardiologist who explained that I have a Atrial Septal Defect- a hole in my heart from birth!  Normally these are caught much earlier.   She said they wanted me to wear a halter monitor for 48 hours regarding the palpitations and I haven't heard back yet on that but on March 1 (next Wed) I will be going in for a TEE (trans esophageal echo) so they can get a better look at the hole and decide how to proceed.

Someone posted earlier that having cancer should be enough and that is how I am feeling!  I am concerned if my poor body is strong enough to have a procedure and recover after all I've just been through.  I do know that I must have it repaired- the consequences of not are possible pulmonary hypertension which is not reversible.  I am also wondering if somehow this is connected to the rest of these symptoms? 

I would appreciate any feedback but more than anything just needed to share it and hope I can get some prayers for next Wed. and for whatever comes.  I do have to say that it is intriguing to think that if they can fix this and my body is operating at 100% capacity for the 1st time in my life it could be a wonderful thing.  Whatever it is I am going take it a day at a time and LIVE my life and enjoy each day.   (((HUGS)))

Kaleena's picture
Kaleena
Posts: 1980
Joined: Nov 2009

Do you still have a port?   I know this seems funny, but as long as I had my port it I would get heart palpitations.  I may get one here and there but not like when I had a port in.

Nellasing
Posts: 529
Joined: Oct 2016

that is very interesting- I've had these for a long time however, I thought they were more frequent since I've had my treatments.  It could be that my body is just much more fatigued and is less able to compensate?   Sure appreciate the info though- you never know- it could very well have added to the problem for me or might help someone else.  (((HUGS)))

CheeseQueen57's picture
CheeseQueen57
Posts: 852
Joined: Feb 2016

BTW, nothing to the TEE. 

Nellasing
Posts: 529
Joined: Oct 2016

Good to hear- doesn't sound fun at all Wink

CheeseQueen57's picture
CheeseQueen57
Posts: 852
Joined: Feb 2016

They should be putting you out for the TEE.  

DrienneB's picture
DrienneB
Posts: 186
Joined: Aug 2013

Way to go as far as living one day at a time and enjoying it! So strange to be carried around in this thing called a body that seems more foreign as time moves on. Good to value the moment-by-moment and have fun. 

I hope they can get your heart issue addressed and also properly diagnose the cause of the weight gain. I hope all of it is fixable and that you begin to feel better altogether.

My body also started balooning a couple of months after surgery. My lymphedema was first noticeable in upper leg, butt and lower back on one side.  I was thin, a longtime swimmer and knew what my body looked like, so was baffled to see my silouette dramatically changed mid-way through my chemo when I was otherwise skeletal. I hope for you, that it is not lymphedema. Or, that if it is, it is a situation that will correct itself later. Sometimes people's lymphatic systems can readjust, with remaining nodes taking up the slack otherwise handled by nodes that have been taken. So these will have problems with lymphedema initially after surgery, but it will not be long-term.

Regarding the "what next?" issue: For some of us, I don't know if we would have the strength to go through chemo if we had any idea what would follow after. Yet it's pretty amazing what we can take. Will pray that the upcoming procedure yields accurate data that leads to a better understanding of the heart problem, and that indications are properly identified, and that there will be some ready solutions for all of the seeming setbacks.

-jane

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

You're right, you surely don't need anything else to deal with.  Cancer should be more than enough, but sometimes life doesn't seem to know what enough is.  I've found that we are always stronger than we think we are, and I have no doubt that your strength will carry you through.  Didn't Debrajo have a similar heart problem that wasn't found until recently?  How odd after all the poking and prodding we endure, something like that doesn't show up until now.  I'll be thinking of you next Wednesday.

Nellasing
Posts: 529
Joined: Oct 2016

Your words of comfort, encouragement, your stories and thoughts help more than you know.  Sometimes you think you are going bonkers because medical people keep looking at you and denying that any of their treatments could possibly be causing any of these things.  If you dare bring up anything you might read on the internet they practically go on the attack saying that those are only a small percentage of people and do not accurately portray the normal outcomes.... well, perhaps I am one of those in a small percentage....and what is the harm of looking at it from another angle?  As we see, if I had not kept digging and stating my concerns about my sudden onset of weight and palpitations and the anxiety both were causing and insisted on an ekg and echo they would never have found the hole in my heart!!! 

All that to say, don't be silenced, be your own advocate and if you feel something isn't right keep at it, go somewhere else, make sure someone hears you because you live inside your body- just like you said Jane- you knew what your body was supposed to look like and it had changed.  That is exactly what is happening to me- my middle and lower body is bloating up up up and nothing I do is changing it, where before I could and did make drastic change in my body by moving it and eating differently.  I am doing that now to no avail. 

I will continue doing all the healthy things I am doing and trying to keep my mind set positive and not worry.  I will value each day and look for each blessing and try to be a blessing to others.  I appreciate you all so much!!!  I will continue to pray for all of you and send big big (((HUGS)))

Tethys41's picture
Tethys41
Posts: 1371
Joined: Sep 2010

I hope you can get the heart issue resolved.  I just want to share my experiences with my naturopath and her patients who are vegetarian.  My ND was vegetarian for many years, until she realized just how many carbohydrates she was eating.  Carbohydrates turn into sugar which turns into fat.  Carbohydrates, in fact, appear to be the driver behind many of today's chronic illnesses, See the book Grain Brain by Dr. Perlmutter.  I have seen many ovarian cancer survivors who can't seem to switch from being vegetarian, and it doesn't do their health any good.  Our bodies simply require some amount of animal protein.  I don't know why you have chosen a vegetarian diet, but I know from personal experience, that carbohydrates are not my friend.  I eat a very low carb, high fat diet and when I do, I lose weight and feel a whole lot better.  When I start eating carbs again, I swell up and can feel the inflammation.  That is why more and more alternative cancer doctors are embracing the ketogenic diet.  It's just an observation.  I know that I would not do well on your diet.  For what it's worth. 

Good luck,

Nellasing
Posts: 529
Joined: Oct 2016

I eat a very low carb and healthy fat diet.  I don't do sugar, grain, dairy and eat almost exclusive organic veggies and a few fruits.  I am being advised by a naturopath. I make most of my own food so I stay away from processed foods.  

I am finding the more folks I talk with many have these same things going on after treatment.  Sometimes it takes a year or more.  I will sure keep everyone posted so that anyone coming after me wont think they are bonkers.  Wink  (((HUGS)))

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