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Weight gain and bloating


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#21 pamsouth

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Posted 15 June 2013 - 11:41 PM

I have lost 40 lbs since Dec 6 at Jenny Craig.  I have been on Maintenance for about 2 months and lost another 6 lbs.  My goal at Jenny Craig was only 30 lb, so I am doing good on my own, now.  Got my glucose down to 100 from 113, range on lab report was 64 ? 112, got my triglyeride down to 135 from 221,  range on lab is 35 to 135.  However my Cholestrol is still high at 231, HDL 45, AND LDL 159, so I need to cut out the fatty foods; red meat, and the egg yoke, cheese and dairy and walnuts, and what ever is fatty.  Jenny Craig diet was high in Carbs on 1200 a day died, the carbs I ate were about 60 % carbs.  But about 6 weeks a go I cut my carbs down and my sugar and Triglyeride went down to normal range. Problem is when I cut my carbs down, I increased my red meat and eggs with yoke and my cholestrol went up.  Jenny Craig gave me a good jump start with losing the 30 lbs, but I lost another 10 lb on my own food and got the glucose/tryglycerides down by cutting down on the carbs.   Even though I have lost 40 lbs, I have not lose a lot of inches around the waist, I still can't seem to lose the belly.  Looks like it will be the last to go.  So am thinking of trying to lose another 10 lb and see if I can lose the belly.  Only lost 3 in in the waist, 6 in in the abdomen, 5 in in the hips, 5 in in the thighs, 4 in in the chest,  2 in in calves.  So only 3 inches in the waist at a 40 lb weight lost, just doesn't seem right!!!  However depending on Inusrance approval.  On Gleevec I am at the top of CCyR. Plus have Chronic Kidney Failure according to GFR and swelling in my hands.  I don't know which came first the chicken or the egg.   I am suppose to be switching from Gleevec to 50 mg of Sprycel for about 3 months and if I have a low CCYR will stay there.  If not then will go to 70 mg for about 3 months if have low CCyR or better will stay there, depends on side effect and other counts.  My GFR on kidneys is down to Stage 3 Chronic Kidney Failure but ONC says that is BS as long as Ceatinine and Bun are OK.  But I read a report where the Creatinine will show normal until you have 60 percent loss of kidneys.  I don't know what to believe.  I see my primary doctor June 16, that would be today at 3 pm, I am going to insist on seeing a Kidney specialist.  I stayed in Florida for a week and 1 week I stay with a school chum I grown up with she has been on dialysis for a year, hopefully her donor will pass all her test for the transplant.  Anyhow after staying with her for a week and seeing what she goes thru, If it comes to losing my kidney's I am throwing in the towel.  Bad enough to have CML let along add kidney dialysis. I  have a  Bad immune system the way it is.  She has that wire under her skin on the upper right arm, they stick a needle in it and the blood come out one end and goes in the other.  her diet is junk food, can't have potassium, or phosprates, etc.  She is tired all day and sleeps alot and when she is out shoppin or whatever, she has to take a lot of short breaks.  Nope don't want to lose my kidneys.  Already lost my gall bladder in 2008 two years after being on Gleevec, don't know if it had anything to do with Gleevec.  Surgeon said gall bladder looked good and healthy but the test said the tube from the gall bladder didn't open up right into the digestive part.  I don't know if switching drugs will be any better, but I'm sure not going on high dose, that for sure, I will throw in the towel before I do that.  After all TKI'S only kill the PH+ at the bottom level, a far cry from a cure that starts at stem cell at the top and mess with the whole blood line. I Could be undedectible and still have a million leukemia cells, so why a high dose if you have to start losing organs.  To me at age 65 that is such a poor quality of life and wouldn't be for me.  For others they it may not mean alot but to me it means everything.  Give 10 more good years in Florida (hoping to move there) and I will die happy.

Pam South

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#22 kellbell

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Posted 25 June 2013 - 10:14 PM

I just wanted to say first of all Pam I hope everything is okay. It makes me wonder to hear this from you about swelling and kidney issues because I worry about it being something serious as you mentioned. I also experience the other symptoms as well and am working hard on determining how to resolve this. It's difficult to always eat and exercise perfectly and when you don't it shouldn't make you feel inable to do things you want to. cgrave2 I also have heel pain and I hate it. I am also hoping to resolve this too with my new Dr.  I have so many things to complain about I feel silly telling them all of it. I would rather do it than not and wish I did.



#23 GerryL

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Posted 25 June 2013 - 11:12 PM

There was an earlier thread on heel pain and Gleevec http://community.lls...age/39012#39012



#24 kellbell

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Posted 26 June 2013 - 08:43 AM

Thank you, it was very helpful!



#25 pamsouth

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Posted 26 June 2013 - 06:26 PM

Thanks Kellbell for your reply.  I felt better in that I have lost 35 lb and exercising and got to spend a month in Florida.  But now I'm back home dealing with all the doctors and issues that I seem to be forever trying to negotiate with my doctors.  I had my colonocopy yesterday which was clear, thank God as my primary doctor said I was pushing the limits as it had been 8 years since the last one and I had 1 benign polyp.  Mammagram was good, too.  Went to Ortho doctor today and have spurrs on the thumb and bone is slipping from the saddle, Ha!  So have a thumb brace and maybe surgery, I don't know, but at least I finally got someone to x-ray and address my hand pain.  Now if I could get someone to send me to a kidney specilist to address by GFR at stage 3 that oncologist says don't worry about.  I have finally decided the reason they don't want to address it is because I am at odds over the dosage of an upcoming TKI switch and am pressing for an x-ray and EKG before the switch.  Onc says we will know when you have PE when you can't breath.  I felt to have peace of mind I would like to have a baseline and test annually before I get to where I can't breath.  I think perhaps I am stepping on the doctor toes.  I have been told all I need is a urine test to see if I have protein in the blood, now how hard is that?  Why, I ask myself can I not get a referral from onc or primary for a kidney specilist.  Perhaps because I am pleading for lower dose of TKI's because of the toxic effect to my organs and my age  65 years, I don't know.   I did read up on creatine as onc says mine is good, but the article said creatine will not show a change until you have lost about 60% of kidney function, thurs the need for the GFR, kidney filteration.  I was thinking maybe if I truly have stage 3 kidney failure a kidney doctor could recommend something to slow it down.  But I suppose if these drugs are part of the problem, that make me a high risk, no one wants to address, and oncologist just wants lower FISH/PCR numbers.  Seems like a big trade off to me.  Just spent two weeks with my friend in florida on a dyalsis, not a good life to live.  Hopefully she will get her transplant.  I would rather just have a consistant FISH than live without my kidneys or have to deal with PE.  I fiigure better safe than sorry, my organs are important!!!   But I won't get my onc to blame it on drugs and say oh lets stay on a low TKI dose.  I guess I am one of the few that feels that way or at least is posting.

If you figure out how to deal with some of these same issues let me know!!   Oh, the onc is willing to write me an order for the x-rays and ekg, but medicare says I need a letter of necessity, his nurse say she doesn't know if he will do that as he said I don't need one.  I think when nurse calls back, I will say "Please tell doc I appreciate his expertise but for peace of mind, I would like to have the test whether or not I have to pay for it."  They can just deal with it when they/we send the bill to medicare.  Trying to give doc the respect he has earned, but it is my body, life, and I am a whole person, not just a number.  Seems doctors point their fingers at each other and pass the buck or don't want the risk of bucking another doctor.  I guess you could say I feel they scratch each other's back, than being more concerned about my well being. 

For now I am going to destress and play it by ear and pray a lot.  A whole lot.  I hate being consumed with this.  But I think it is better to be safe then sorry, even at the expense of stepping on docs toes, just got to find the right tone and phrase if there is one. 

I need to go live in Florida and enjoy activites with others my age, and bask in the sun, eating fresh seafood, while overlooking the ocean, and forget about all this, and enjoy what years I have left.  A lot less stress while I was in Florida!

Take Care, PamSouth


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#26 pamsouth

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Posted 21 July 2013 - 11:44 AM

Had been on Gleevec since July 2005, took my last Gleevec June 7th, 2013.  Today is 7/21/13 so I have been off Gleevec for 6 week, start Spyrcel 50 Mg, next week.  It feels good not to have all that stomach bloat and swishing in my belly when I walk or exercise.  Not sure what will happen on Spyrcel, but doc has said I could stay on Spyrcel 50 mg as long as I stay in Ccyr, may take awhile as I am sure my counts are probably up since I have been off Gleevec 6 weeks.  I am 65 years old so I am sure my medical problems are a combination of things. Sticking to the issue of weight and stomach bloat, I lost 30 lbs on Jenny Criag from Dec 7 to somewhere around May 1. However I have lost another 10 lbs since than.  I went from 191 lbs (Dec 2012) to 149.0 lbs (7/21/13).  I attribute the last several lbs to losing the stomach bloat.  That 30 lb weight lost I had only lost 3 inches around my waist, but when I  exercised I could feel and hear the swishing of water in my belly.  But since I have been off Gleevec since June 7th, I have lost another inch around the waist and stomach feels much better/flatter.  Now for the Spyrcel 50mg I start next week.  Could be same thing or worse, (fluids)  or a whole new set of side effects.  But for peace of mind with these other health issue I have been having I had to try something else.  Hopefully staying at a low dose of Sprycel 50mg.  I do think a combination of my age (65 years) & in 1997 went on blood pressure med's and taking a diuretic as a combination of blood pressure in 1997 not as a diuretic at that time.  But than develope arthritis in my hands and swelling after Gleevec, probably just age and med's.  However I have cut way back on the sodium either eating the Jenny Craig food or eating my own fresh food.  I can tell the difference now, when I eat out the food is salty.  Sodium shoots my blood pressure & weight up and than joint pain.  Now my problem for 2 years with GFR Kidney Filteration runs between stage 3 & 2 which I believe is a combination of long term use of Diurectics, blood pressure, and age.  So now I only take a diurectic once or twice a week, and since I have  lost 40lbs I take a low dose blood pressure med.  However  look out if; I stress or eat soduim, and don't exercise, the blood pressure shoots straight up.  It is hard with CML and medicines and age, but if you can eat healthier and smaller portions and exercise and cut down your medicine & stress, It all helps.  Your doctor might be able to send you to a dietician, and perhaps your insurance will pay for it.  I found that why I was on Jenny Craig and get blood labs, I could see what foods I needed to adjust.  My glucose was boderline so I cut back on the carbs, my cholestrol is still a little high, so have cut back on the red meats.  I need to becare of protein as is hard for my liver and kidneys to filter.  So you have to work with your own body and labs and diettician.  Keep track of what you eat, I kept everything, on the Jenny Craig weight site, which included an arm band that kept trach of what calories I burned doing exercise, walking, sitting, laying, etcl.  Some pretty sophisticated  stuff out there now a days.  It is a lot of work trying to stay healthy, so find some fun things to do and detox the stress, not always easy to do, I have relaspes, but get back on track.

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