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Anyone else had blood glucose problems since dx?


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#1 VickiW

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Posted 23 December 2011 - 12:11 PM

Merry Christmas Everyone!!!

Hope you all are doing well this season My question to you is; anyone else having problems with blood glucose levels?  Background;  prior to dxd I had a constant level around 80 something, no problem.  However, when I was dxd, I was immediately hospitalized due to a huge spleen, wc counts above 500, wildly anemic, etc.  Anyway, among other things they pumped me full of "sugar water" for days to make sure my kidneys stayed working while I was "drugged" and unable to eat because of the size of my spleen.  Naturally my blood glucose levels shot waaaay up and never again totally returned to where they were.  My counts weren't bad when I was on Gleevec but now that I am on Sprycel I can't get it down below 100 (officially pre-diabetic) no matter what I do although I have recently been able to get it down to under 110.

anyway, have any of you had to deal with this?  Anyone seen or heard of any studies done?  Just looking for answers I guess.

Oh BTW, after 2+ years on Sprycel, I have finally had 2 solid PCRU's in a row!!!!  I am officially a big "O"!!!!

hugs and prayers to you all,

Vicki


Dxd 2007

started on Gleevec switched to Sprycel 100mg in 2009

PCRU since 2011

20mg Sprycel every other day since Dec. 2014

Began TFR 4-18-16


#2 Taylor

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Posted 23 December 2011 - 12:37 PM

Well, I'm on Tasigna (since last Feb, my only TKI) and I've gone to my onc every three months or so once things settled down.  They do chem 14 every time and last time she asked if I was diabetic because my glucose was 132.  I said no (I'm 25 although I need to get in better shape) but I had just eaten some pancakes with agave nectar about 45 minutes before my blood draw.  I'm not sure if that is enough to spike it, but I was concerned because Tasigna can cause high blood glucose.  It may be the same for Gleevec.



#3 ChrisC

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Posted 23 December 2011 - 01:40 PM

Dear Vicki,

You did it — whoo hoo for you being PCRU! That is great news. Carry on!

Re glucose levels: I have just had a consultation with the nutritionist for testing "pre-diabetic" after a non-fasting glucose test came back 5.8 (top of the normal range is 5.7 apparently). Fasting glucose results have been between 106 and 110, so that is above the preferred top level of 100.

Okay, good to continue learning how to eat healthier, as they know I'm not fond of medication and side effects. Less carbs, more fruits and veggies: I can do that. (Good news/bad news for me: Trader Joe's now has gluten-free chocolate chip cookies (good news for me, being GF for over six years) but they are really, really, really good — thin, crispy, fresh (bad news for me!!).

Please post answers to this Sprycel/glucose levels as you find them. Thanks.

ChrisC


Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#4 VickiW

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Posted 23 December 2011 - 02:30 PM

Taylor ~ I am always careful to do at least an 8 hour fast before my appointment.  That way I can be assured my results are consistant.  And yes, that much sugar before a blood test could really mess things up


Dxd 2007

started on Gleevec switched to Sprycel 100mg in 2009

PCRU since 2011

20mg Sprycel every other day since Dec. 2014

Began TFR 4-18-16


#5 VickiW

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Posted 23 December 2011 - 02:43 PM

Hi Chris!  thank you for the "whoo Hoo!"  How did you know that's exactly what I did when my Onc called with the latest results  

about the pre-diabetes.  I have already managed to drop mine from 110 to 105 just by adding whole oats (not instant) and flax seeds to my diet and doing my best to eliminate processed meat.  (I just sprinkle the seeds on everything and add the whole oats to soups, cereals, basically anything hot.  You can always result to oatmeal for breakfast but I just got sick of that).  My weakness is double mocha lattes (I know~a dairy no no)  and I've been good so far so that might be what "Santa" will bring me Christmas morning  


Dxd 2007

started on Gleevec switched to Sprycel 100mg in 2009

PCRU since 2011

20mg Sprycel every other day since Dec. 2014

Began TFR 4-18-16


#6 hannibellemo

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Posted 23 December 2011 - 05:19 PM

Hi, Vicki,

Congratulations! I'm not there yet and I try not to have PCRU as a goal but I'd take it as a gift!!

I have also noticed an increase in my glucose numbers. I always fast before a blood draw and it is always high 90s, whereas before dx it was low 80s - high 70s. The normal range for my locality, both in N Iowa and S Minnesota (Mayo - Rochester) is 70-110 so I don't stress too much.

I'm thinking about being a little more stringent in watching my simple carb intake after the holidays (especially the 'whites'), I just feel better when I eat higher proteins, fats, veggies and certain fruits and forget about the starches.

Happy Holidays!

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#7 susanlathers

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Posted 23 December 2011 - 06:04 PM

Hi Vicki and all others with glucose problems on TKI

   I am so sorry you have to deal with this along with CML but it is nice to hear I am not the only one fighting the high glucose levels. For a long time I complained about this subject and it seemed no one else on Tasigna had a problem with it.  High glucose levels were  the most disturbing thing I experienced when I started on Tasigna 6/10. I was diagnosed 6 yrs ago and tried Glevec and then Sprycel,  My glucose levels were always on the high side, but Tasigna pushed it over the border line of pre disbetes.  Fasting blood sugars of 130 and A1C  of 6.3.  I tried the diabetes drug Glipizide and had a couple of episodes of extreme  low blood sugar.  This was terrifying, not only because of how you feel but because it happen during the time you can't eat when you take Tasigna and the first thing you have to do with low blood sugar is eat.  I freaked out and didn't know what to do.  thank goodness my insurance has a nurse help line to call and walk me thro it.

  I told my Onc.  I will try harder with diet, exercise, I don't want to take Glipizide. She said ok and tests me at least  every 3 mo. It has been a loosing battle  I am about ready to give up on and between the Tasinga ( hours you can't eat), taking it twice a day 12 hrs apart and trying to eat a good diabetic diet I feel like my life is controlled by food, when to eat, when not to eat and  what to eat.  I hate it!  For this reason alone I would try another TKI if there was one.  I have no idea if the high blood sugar problem will become permanent or subside if there is a med change, if and  when that becomes possible.

   It helped me a lot to take the diabetes classes my insurance offered.  I thought I knew a lot about food and nutrition but after much reading and studying I realized how many things I didn't know.  It has been quite enlightening to know what foods do what, what to avoid and what to eat to help.  Diabetes is not a disease you can handle casually, it does too much far reaching damage.

  I hope you all get a handle on this early, maybe it will make a difference.  Your numbers don't seem that bad to me and maybe a few minor changes will make the difference.  Educate yourself, you will not regret it.  dlife.com is a diabetes web site that has all kinds of information, you can ask questions also.  I hope to hear good news where you are concerned.

Merry Christmas to all of you....... (I should be very grateful, without these TKI  I  would not be able to say Merry Christmas this year)  I have outlived  the CML life expectancy without treatment



#8 pamsouth

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Posted 23 December 2011 - 09:38 PM

@ susanlathers,

Was wondering why you went from Gleevec to Spyrcel then onto Tasigna? Seems like they each have a trade off.

I too was diagnosed 6 years ago, July 2005.  I am still on Gleevec and happy to stay on Gleevec.

However this last year my old oncologist has wanted to move me to change to Tasigna.

I decided to go to the Number 1 premiere cancer center in Indiana for a second opinion.   To make a long story short I will be changing over In january to the new oncologist and having my labs done at the hospital there where his office is.  They do their own labs and interpret them.  My old onc was sending my labs from Indiana to New Jersey and the lab had changed over to the new International Scale, and the labs were very questionable to their accuracy.  I think it is important to have your labs done in house in 48 hours or less, then sending them off and perhaps have tainted blood.  Plus I think there was a big push by Novartis on the doctors to pressure the patients onto a newer patent, as Gleevec will become much cheaper when it become generic in 2015.  I'm not sure how accurate these PCR really are. I know every one just cringes ever-time a Pcr is done.

Anyhow I was just wondering why you were sort of jumping around with the different TKI?  I have read on some post where patients changed from gleevec to a different TkI & had worse problems, then went back to Gleevec and then had a new set of problems with Gleevec.  Kind of scares me to be jumping around from drug to drug unless, I am really, really, convinced there is a need.  Seems like all the TKI have their pro/cons.  Just hate to put my body thru all that let alone the stress of uncharted new terriotory changing drugs.

At least Gleevec has some history and data.  Use to science had to test these drugs for about 10 years.  I think Gleevec went into trial in 1998 and became a patent.  They push them thru very quickly now, and that is probably a good thing.  However I really wonder how hard they are working on a cure.  If there were a cure now there would be all that big money for Pharma and all.  Lots of jobs at these drugs company too.  It is sad to think that perhaps there might be a cure with natural things like Omega 3 or something, but that wouldn't make the drug companies any money.

Just speculation.  But then I think a lot of people feel that way.  Like how long have we been waiting for a cure for MD. Muscular Dystrophy?  Remember all the Jerry Lewis Telethons?

Just Curious?

PamSouth


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#9 susanlathers

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Posted 24 December 2011 - 12:06 AM

Dear PamSouth

  I was diagnosed 1/06 so you are 6 months ahead of me.  I was on Gleevec for 2 yrs without good response, right now I can't think of the term they use for that, resistant I think.  Switched to Sprycel and struggled with bad pleural effusions with 3 thoracentesis and still without good response.  Went to Tasigna 18 months ago and within 3 months was PCRU (undetectable).  Side effects are minimal, except for what I wrote about earlier.  It is very expensive, $8,000. per 28 days.

       Why was your Dr. wanting to switch to Tasigna?  If your response has been good and the side effects not bothering you I would question changing also. I would think they would have to have a pretty good reason before doing that base it solely on your needs. Have you read up on Tasigna?  I would advise reading the details.  The food thing is very restricting, at least it is for me. I have read a lot of posts here from people who have been on Gleevec for 8-10 years and doing great. I have also noticed that when people  who used to post on different sites switch to Tasinga they soon stop posting.  My conclusion is that it is because they are doing so well and don't really have anything to talk about any more.

    I agree with what you said about how much do they really know about these drugs.  I wonder what the long term effect is going to be.  Some of you are young, I am not, and will be on them for a long time.  However, I also have been reading about people going off meds after being PCRU  2-3 yrs and even some who consider MMR for several years to be good enough to try going off.  that has been my goal, sadly, not my oncologists. Every time I see a Dr. in another dept I feel like I have to explain the drug and even carry the Novartis print out because no one has heard of it.  I hope they would look it up but I'm not going to take that chance.

   Nice communicating with you

Susan



#10 pamsouth

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Posted 24 December 2011 - 01:37 AM

SusanLathers.

I am not sure about old onc.  I did have a jump in my pcr.  However I called the lab and they had changed over to the IS Scale.  Also my labs are sent out of state, so even as the onc said they is much room for error.  She did another PCR lab 1 week later and the PCR had significate difference (much, much better).  That there was no way the other PCR could have been right.  Even the onc I went to for a second opionion said the labs were very questionable as to accuracy.

Anyhow at Indiana University they do their own lab right there on site and interpret them, so they should be much more accurate then sending them out of state.  Actually I believe PCR labs should be done in 48 hours or less or the blood becomes tainted. 

Actually I think my old ONC probably has mostly breast cancer patients. She has many patients and very many of her patients have a lot of respect for her and consider her to be the best.  However IU has an expert group on Leukemia and when I called the LLS they said the IU Simon Cancer Center was rated as the #1 premier of Indiana.  I think it is important to go to someone who is in that particular field of the disease that you have.  I like it that Indiana University has a group of Leukemia experts I like to think of the group as "a think tank".

I got the greatest Christmas present yesterday, when Indiana University billing called me, and they talked to my insurance and their (IU) billing people and they are going to code my visits so the insurance will pay for them.

Wow, regarding your post "It is very expensive, $8,000. per 28 days.'  my last shipment of Gleevec was over $5,400.00 for 30 days supply of 400mg.  I am very fortunate that my insurance picks up all but $20.00, then Opus co-pay was picking up the $20.00 I guess Novartis is cutting the co-pays off Jan 2012 for Gleevec, but the $20.00 a month won't be a big deal.  Just praying we our insurance doesn't change before it becomes generic.  But then if for some reason down the road I would need to change, well you know you got to do what you got to do and not worry about it, just pray that God is watching over us.

My previous ONC mentioned and was adamit about going on Tasigna, I don't know if that was because it is another Novartis product like Gleevec or what her thinking was.  I heard that sometimes Drug Companies give onc kick back or perks, I do not know if that is true.  But when I talked to the Doctor at IU he said we can do the labs in Jan, then another one in 3 month and then another one in 3 months and if I am on an even level he is ok with that.  He said he doesn't necessarily go by the guidelines that are set for the whole world.  Many gray areas as every one is different. He also mentioned Sprycel. When I read up on Tasigna;  Some of the newer patients don't seem to like this thing with Tasigna about when you can take it on an empty stomach I think.  Interesting that you said you don't see very many of the patients on the board after awhile?? Was a little worried with Tasigna about the heart problem as I have an irregular heart beat and my family history of heart problem.  A brother 2 years younger who has had quadruple by pass, a stint, and 3 defib and his heart shocked three times this year.  He was to be my stem cell donor if I need one. But then I see Sprycel has bad pleural effusions, like you.  So I am hoping and praying that my labs will be good and I can stay on Gleevec.  It has been six years and I have gotten used to Gleevec and we have made friends. 

I am not young either I will be 64 this New Years day.  Yea the doctor at IU said some patient go off the TKI for a year and then when their counts go back up, they go back on something.  It kind os scare me to do that, as you know your spleen could fill up or something go bad.  I was reading Trey's article *it was extremely important in helping me make this decision not to go off the drugs."  I would have to go look that link up.  You can click on Trey name I look at his activity as I forget what it was under.  But anyhow I realized how complicated CML really is.  I just thought the problem was at the Chromosome level where the #9 & #22 break and fuse together. But as I understand it that is only the bottom level as far as the drugs can get to.  I guess when the marrow make the stem cell which make another stem cells, something goes wrong at that level before it turns into blood.  There are two sides the Myeloid and the Lymphoid.  the Myeloid making the red cells, platelets and white cells. So something goes wrong at the top of the chain of command and the TKI can't get to the ancient stem cell or so called bad stem cells as the "ancient mother ship".  Why can't they call the bad stem cells "the Ancient Father Ship"?  Anyhow she, bad stem cells is somewhere close to the top, like as in genealogy.  The ancient stem cell can hide close to the bone and lie dormat and come out later and does her thing.  The B Cell from the Lymphoid side can't get the the bad stem cell hiding next to the bone as not enough oxygen.  Something like that kind of complicated, you would have to read Trey and Call Me Lucky article.  But after reading that I would think long and hard before I went with off my Gleevec.  I think I would like a little more research on the patients that have went off their TKI, so I am just going to hang low awhile. 

I will have to see if I can find Trey's article.  Call Me Lucky had a good one too with a good article.  I really did not think CML was that complicated.  That bad ancient stem cells is quite tricky.

I appreciate your input & glad to hear you are having a good response on Tasigna.

Have a Merry Christmas and Blessing.  Praying that we will live long enough to see a cure.  Even though most of my life is over at 64 I would like to live long enough to celebrate the cure.  My poor friend has bad, very very bad breast cancer. She just had several chemo, breast mastectomy, skin graft, infection, graft removed, it is horrible, much worst then they thought.  Now she has to have radiation.  When I hear and read her journey on caring bridge I feel lucky to have CML.

Well I will catch later. Hugs and prayers for all of us.

Pam South


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#11 VickiW

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Posted 21 January 2012 - 02:43 PM

Hi Pam!

life over @64? ummmmmmmmmmmmm, NO!  I'm right behind you and I'm just getting started! 

Hi Susan!

thank you for the great input and encouragement!  Yep, my blood glucose isn't that high YET and I am just determined to keep it that way!  Got enough to deal with (old, fat, CML~hehehe) without adding that to the plate too.  Since I was on here last I've made some serious changes to my eating.  Dumped the "white" which really wasn't that hard for me, never was a big white bread, rice, sugar etc. fan anyway.  I now start my day with a hot bowl of Kashi sprinkled with flaxseed meal and a glass of vanilla soy milk or almond milk.  The rest of the day I eat pretty much what I want as long I watch all the "white" suff (flour, sugar, etc.) and steer clear of processed meat and the red stuff unless it's venison (good thing I love chicken ).  Only hard part has been giving up dark chocolate or mocha stuff.  Up side?  I've dropped 20 lbs so far without counting a single calorie!!!  Oh, and I  just found out that almond milk makes a dynamite latte and Turango makes sugar free flavorings so my dusty espresso machine is going to be my friend again

  I have my next Onc appointment March 12.  I'll post here all my results and let you know.  WISH ME LUCK!

HUGS AND PRAYERS TO ALL!!!!  HAPPY GREAT AND HEALTHY NEW YEAR!


Dxd 2007

started on Gleevec switched to Sprycel 100mg in 2009

PCRU since 2011

20mg Sprycel every other day since Dec. 2014

Began TFR 4-18-16





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