Weight Gain

Nellasing
Nellasing Member Posts: 528
edited January 2017 in Uterine Cancer #1

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)))

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Comments

  • MAbound
    MAbound Member Posts: 1,164 Member
    Weight

    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?

     

  • Kaleena
    Kaleena Member Posts: 2,081 Member
    edited January 2017 #3
    Good topic

    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.

     

  • Tethys41
    Tethys41 Member Posts: 1,373 Member
    Weight Gain

    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?

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    edited January 2017 #5
    See a dietitian

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

  • Nellasing
    Nellasing Member Posts: 528
    edited January 2017 #6
    Tethys41 said:

    Weight Gain

    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?

    Yes- had that test- forgot to mention that thx!

    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! 

  • Nellasing
    Nellasing Member Posts: 528
    Kaleena said:

    Good topic

    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.

     

    So frustrating!

    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)))

  • Nellasing
    Nellasing Member Posts: 528
    edited January 2017 #8
    MAbound said:

    Weight

    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?

     

    I am wondering about fluid- lymph

    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)))

  • Nellasing
    Nellasing Member Posts: 528

    See a dietitian

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

    I spoke to a dietitian at my Naturopath's office

    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
    TeddyandBears_Mom Member Posts: 1,811 Member
    edited January 2017 #10
    Nella, Lucky for me I didn't

    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

     

     

  • Kaleena
    Kaleena Member Posts: 2,081 Member
    edited January 2017 #11
    Nellasing said:

    So frustrating!

    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)))

    Appointment

    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
    Nellasing Member Posts: 528
    Kaleena said:

    Appointment

    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

    Thank you Kathy!

    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
    Kaleena Member Posts: 2,081 Member
    edited January 2017 #13
    Nellasing said:

    Thank you Kathy!

    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)))

    My gallbladder was fine the

    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

  • Paleo/Primal

    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
    Nellasing Member Posts: 528
    edited February 2017 #15
    Thanks for the info

    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
    Kvdyson Member Posts: 789
    Nellasing said:

    Thanks for the info

    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)))

    Do you like yogurt? I eat an

    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
    Nellasing Member Posts: 528
    Hi Kim,

    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
    Nellasing Member Posts: 528
    edited February 2017 #18
    Hey guys- update

    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)))

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    edited February 2017 #19
    Good Luck

    BTW, nothing to the TEE. 

  • Nellasing
    Nellasing Member Posts: 528
    edited February 2017 #20

    Good Luck

    BTW, nothing to the TEE. 

    Thank you Cheese!

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

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    edited February 2017 #21
    TEE

    They should be putting you out for the TEE.