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Question for Trey or anyone who wants to take a shot at it..


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#1 jmoorhou

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Posted 11 April 2015 - 06:00 PM

I have been having cramping in my legs and arms mostly change their position too quickly.  And, I just checked my potassium test back in 2010 when I didn't have CML (actually I felt it coming on for several years).....

 

I just checked my test result from two weeks ago and the Potassium was the same as back in 2010, when I was having some cramping but not as bad as it is now...

 

Question...what is causing the more severe cramping a mineral we don't know about??


Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

#2 gerry

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Posted 11 April 2015 - 06:05 PM

Dehydration seemed to impact me most for cramps while on the Gleevec - usually following having to take a fluid tablet for the fluid retention.

I also took magnesium and had a banana for potassium everyday.



#3 Dom

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Posted 11 April 2015 - 06:19 PM

I was having severe leg cramps, but I never knew if that was cml or a Gleevec side effect. But, like Gerry said, it was definitely dehydration. Now I take about four glasses of water a day, no cramps. But, the acid reflux started. Now it's a matter of timing. I take the water after I've fully digested a meal. No cramps, no reflux.

Diagnosed in February 2014. Started Imatinib 400 in April.
2014:     3.18     0.91
2015:     0.22     0.16     0.04     0.55
2016:     0.71     0.66

(Started Imatinib 600 in April 2016)
2016:     0.42     0.13     0.45
2017:     0.17     0.06     0.10     0.06     0.34


#4 jmoorhou

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Posted 11 April 2015 - 06:29 PM

What is a fluid tablet...may I ask?


Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

#5 gerry

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Posted 11 April 2015 - 07:20 PM

Prescribed medication, you might call them a diuretic (water pill) - Lasix. 

Doc put me on Moduretic and to only take it when I really needed it. I noticed that I tended to suffer from cramps more after I had taken it. But you get caught in a bit of a loop, fluid would build up impacting my blood pressure, so would need to take one, then I had to be careful stretching etc.  



#6 pammartin

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Posted 11 April 2015 - 07:48 PM

There are times when water is overrated and wine is underrated.  Since I can take the Prilosec again, water has become very overrated.  Enjoy your wine, just don't forget that other stuff (water) because alcohol does dehydrate the body.



#7 Billie Murawski

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Posted 11 April 2015 - 09:31 PM

I alternate wine, then water wine,water it"s like receiving communion all the time. I'm trying to get some brownie points for later. :)



#8 Billie Murawski

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Posted 11 April 2015 - 09:33 PM

Thanks Dom and Jerry, I just had three glasses of wine which I'm not supposed to have Onc said alcohol increases chances of anemia...but right now I don't give a shit...

A couple glasses of red wine is good for the blood, my onc told me that and I always listen to him.



#9 pammartin

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Posted 11 April 2015 - 09:36 PM

Billie, he meant bottles.  A couple of bottles.



#10 Billie Murawski

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Posted 11 April 2015 - 09:39 PM

Gotcha, Until I get a wine glass the size of teddyb's I'm strictly a bottle baby!.



#11 gerry

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Posted 11 April 2015 - 10:25 PM

The wine would make the edema worse for me, but I still had a wine or two when out with friends. I just learnt it was going to happen. lol



#12 Trey

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Posted 12 April 2015 - 09:18 AM

I just know that potassium and magnesium supplements help me.  I would not rely on test measurements of minerals.  I don't think the tests show the true story of availability, probably due to the effect of TKI drugs on bone remodeling and mineral usage.



#13 scuba

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Posted 12 April 2015 - 11:08 AM

I have been having cramping in my legs and arms mostly change their position too quickly.  And, I just checked my potassium test back in 2010 when I didn't have CML (actually I felt it coming on for several years).....

 

I just checked my test result from two weeks ago and the Potassium was the same as back in 2010, when I was having some cramping but not as bad as it is now...

 

Question...what is causing the more severe cramping a mineral we don't know about??

 

It may be a Magnesium deficiency. The best Magnesium supplement is one labeled: Magnesium Taurate. Aim for 500 mg per day (250 in the morning - 250 at bedtime). Magnesium Citrate is o.k. also, but tends to have a laxative effect. If you like laxatives - MgCitrate for you.

 

Once I started taking Magnesium, leg cramps were gone, heart flutters were gone, great sleep achieved.

 

An aside - if you take vitamin D3 supplements, adding Magnesium is very important. Vitamin D uses up Magnesium when added as supplements. 


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#14 Frogiegirl

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Posted 12 April 2015 - 03:58 PM

Scoobs do u have a preferred brand for this said magnesium?

Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.


#15 scuba

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Posted 12 April 2015 - 04:02 PM

Scoobs do u have a preferred brand for this said magnesium?

 

I bought Magnesium Taurate at the Vitamin Shoppe. The brand is 'Cardiovascular Research'

http://www.amazon.co...s/dp/B000OP5N12

 

But brand doesn't matter in this case. It was just there in front of me when I saw the label. 


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#16 Jenny-Girl

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Posted 14 April 2015 - 11:28 AM

Hi.  I was on Gleevec for 9 years.  Towards the end of my Gleevec usage I actually ended up in the ER because my muscle cramping got so bad I literally ended up on the floor on my knees.  I would get cramps in my torso ( on the sides), my fingers, my arms, feet, legs, neck etc. It was dangerous to drive if I would get one in my foot or leg.  Every time I went for a procedure, lying down on the exam table would trigger them in my torso, the staff would look at me like a was an alien, I couldn't breath or talk, the pain was excruciating and there was nothing I could do except wait it out. The time I ended up at the ER they said my electrolytes and labs were "normal."  No explanation.  So they gave me muscle relaxants, which is fine, unless you'd like to be functional for the day.  I found taking magnesium helped some, I actually took a store brand calcium, magnesium, and zinc combo supplement.  After 9 years of the misery of Gleevec side effects, I finally bit the bullet and switched to Sprycel. Started on a 70mg and the side effects were horrible.  (but due to memory loss from tki's , I can't tell you exactly what they were, but they were horrible).  Doc knocked me down to 20mg.  I had been in complete molecular remission for 8 years on Gleevec.  My numbers jumped up at little after the switch but dr held out with me on 20mg and they eventually went back to undetectable.   Maintaining undetectable now.  Still have debilitating joint pain, and other issues but the cramps are completely gone, as is the eye swelling, and constant diarrhea.  Its still not a picnic, but so much better than it was. I thank God for Gleevec and CMR, but I am so grateful Sprycel was discovered since then and is much kinder to me.






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