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#1 Gail's

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Posted 15 October 2016 - 02:35 PM

Sprycel has sure done a number on my pcr! I was slowing down on response with gleevec so was switched to sprycel 100 mg a few months ago. Loved getting rid of the majority of the nausea. But did have increase in muscle and bone pain and fatigue. I choose those side effects over nausea any day. But the best news is that since my numbers dropped like a rock, my onc encouraged me to go down to 70 mg and said we'd probably drop even Lower at the first of the year.

I've been on the 70 mg, still waiting for a big change in symptoms but it's only been a week so I'll be patient!
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#2 cleocans

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Posted 15 October 2016 - 03:15 PM

That's great news!  The muscle and bone pain go away.  I didn't realize how fatigued I was until I stopped my Sprycel.  It's been almost three weeks since my last pill and I have noticed a big difference in my energy!



#3 scuba

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Posted 15 October 2016 - 06:13 PM

I had muscle pain when I started Sprycel and Dr. Cortes recommended I take 400mg Magnesium. Once I started to do that, i have not had muscle aches again. I sleep better too (Take half the dose before sleep).


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"


#4 Gail's

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Posted 17 October 2016 - 05:40 AM

Thanks Cleo and scuba. I'm taking magnesium 500 mg at bedtime. I thought about increasing the dose since the muscle cramping still isnt resolved but my onc reminded me it can have a laxative effect that would maybe worsen the diarrhea I occasionally have. I have recently added k2 with my vitamin d and am using turmeric capsules. I'm trying the suggestions given here though I still use norco tablets 2-3 times a month when the pain is strong enough to disrupt sleep. I'm just excited to see some improvement, especially with the fatigue
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#5 scuba

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Posted 17 October 2016 - 07:30 AM

Spread the magnesium out a bit - 300 at bedtime and 200 in the morning. Which form of magnesium are you taking?

 

Magnesium Oxide is poorly absorbed. I take magnesium taurate and sometimes magnesium malate. 

 

More on magnesium:

 

https://drnibber.com...s-of-magnesium/

 

I predict you will be able to drop your Sprycel dosage significantly maybe even drop as low as where I am (20 mg). It's excellent that your PCR is dropping fast.


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"


#6 Gail's

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Posted 21 October 2016 - 01:21 PM

It's a combo of oxide, citrate and aspartate. Stopped taking it for a week to see if middle of the night bathroom trips decreased and they did a little. But aches are back big time so I'm going to get the magnesium taurate. Thanks, scuba
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#7 scuba

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Posted 21 October 2016 - 01:41 PM

Some additional info on Magnesium:

 

http://www.drsinatra...r-heart-health/

 

https://draxe.com/el...lyte-imbalance/

 

Blood serum is not a good indicator of sufficient Magnesium! Keep this in mind. Our blood system in order to work properly has to maintain a very fine balance in the electrolytes. These include Ca, K, Mg, Cl, Na (Calcium, potassium,magnesium, chloride and sodium). 

 

Of these - Calcium is the most important ant the most tightly controlled in our bodies. In fact, our bone system's main purpose is to supply and take out Calcium from the blood in order to keep it rock solid. Next are sodium and chloride. The body maintains a tight control on these as well and moves fresh water in and out in order to conserve or dilute these salts to keep the ratios in balance. Our diet is loaded with sodium and chloride so getting enough is not an issue. In fact, we probably have too much available and need to drink lots of fresh water just to keep these ions diluted. Finally there is magnesium and potassium. These two require the same fine tuning as the others and uses body organs to keep the levels tightly controlled in the blood. So when you are deficient in Magnesium (or potassium) it doesn't show up in a blood test as a lower number. In fact, if it did - you're in trouble. The heart will lose its Magnesium to the blood in order to maintain blood levels. And this is where trouble can occur (same for potassium) for the heart.

 

The single best way to minimize or prevent a heart attack is by making sure you have plenty of magnesium. The body will scavenge magnesium from non-working muscles to working muscles (like the heart). When we have cramping in our muscles - that's an indication that magnesium is getting low. 


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"





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