
#1
Posted 09 March 2016 - 11:33 PM
#2
Posted 10 March 2016 - 08:44 AM
Palpitations are often caused by ion imbalances - mostly Magnesium deficiency. I had similar palpitations that seemed like anxiety attacks along with missed beats. I did visit a cardiologist to get a baseline along with mentioning this to my Oncologist. They both told me to take Magnesium (as either Magnesium Citrate or Magnesium Taurate). Once I started taking 400 mg Magnesium, my palpitataions and funny heart beats disappeared. Muscle cramping in my legs also disappeared.
https://www.wellbein...cues-the-heart/
http://www.drsinatra...r-heart-health/
TKI drugs (and drugs in general) deplete the body of Magnesium (direct pers. comm. from Dr. Cortes). It's bad enough TKI's (second gen. mostly) are toxic to the heart, missing enough Magnesium makes it worse.
As you have low blood pressure and low cholesterol (lucky you) - you don't have an issue with 'clogging'. You have an electrical issue most likely. Ions such as magnesium are vital for proper muscle (i.e. heart) function.
One additional point - blood tests for Magnesium are meaningless in terms of making sure you have enough magnesium. Your body will make sure blood level of magnesium falls in a very narrow range. It will scavenge magnesium from body tissues (i.e. muscles, heart) to keep the blood's magnesium level proper. This is vital for blood plasma chemistry. If you were to have low magnesium in your blood (hypomagnesemia), that would be a very serious condition.
http://emedicine.med...038394-overview
Your heart palpitations (and perhaps you have leg cramps at night?) may be a warning sign you are getting low on Magnesium in your muscle tissues. Time to fill up. Taking Magnesium at bedtime will help you sleep better too.
http://www.ancient-m...agnesium-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"
#3
Posted 10 March 2016 - 08:58 AM
Hi, I get leg mostly feet cramps always have on sprycel. But Scuba, I tried taking the magnesium to help with it which it did but couldn't put up with the bathroom issues it causes. It helped the cramps maybe I should try taking it again. When I mentioned the bathroom issues (onc) he said well yes that is what magnesium does, and chuckled. My blood test as you say always show normal ranges so he didn't think it was necessary but said it would help the cramps in my feet. At times I think my heart is irregular. But nothing that bad.
Terran good luck its really hard when you get two opinions from 2 doctors!
take care,
Cathy
Cathy
DX 5-2010 Started normal hydra then Gleevec for 9 months stopped working
Tasigna after 5 pills pancreatis numbers jumped up quickly
Started Sprycel 100, 8-2010 for a 3 years went down to 50 mg numbers at one point really jumped up quickly
currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then
After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now
numbers lower then ever go figure I've never been this low of a number
last 2 tests .0686 and .0181 !!
#4
Posted 10 March 2016 - 09:36 AM
Hi, I get leg mostly feet cramps always have on sprycel. But Scuba, I tried taking the magnesium to help with it which it did but couldn't put up with the bathroom issues it causes. It helped the cramps maybe I should try taking it again. When I mentioned the bathroom issues (onc) he said well yes that is what magnesium does, and chuckled. My blood test as you say always show normal ranges so he didn't think it was necessary but said it would help the cramps in my feet. At times I think my heart is irregular. But nothing that bad.
Terran good luck its really hard when you get two opinions from 2 doctors!
take care,
Cathy
Hi Cathy,
My blood test as you say always show normal ranges so he didn't think it was necessary,
It's interesting about doctors - 'he didn't think it was necessary' because your blood showed normal. They're not scientists. If he recalled his biochemistry from med school days, he may recall how magnesium is handled in the body and tightly regulated in the blood. The blood is the last place magnesium will drop.
No matter - he is correct that magnesium can create bathroom issues. It doesn't for me ... because:
1. Take Magnesium Taurate (or Citrate, but I prefer Taurate) - NOT magnesium oxide.
2. Break the dose into two - one dose in the morning (I take 200 mg in the morning) with food. And one at night before bedtime.
3. If you still have issues - start with a lower dose and work your way up. Your body will acclimate.
Best,
Michael
"My blood test as you say always show normal ranges so he didn't think it was necessary" ...
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"
#5
Posted 10 March 2016 - 10:02 AM
Okay thanks I'll try that ! Splitting it. I do take the Citrate.
Cathy
Cathy
DX 5-2010 Started normal hydra then Gleevec for 9 months stopped working
Tasigna after 5 pills pancreatis numbers jumped up quickly
Started Sprycel 100, 8-2010 for a 3 years went down to 50 mg numbers at one point really jumped up quickly
currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then
After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now
numbers lower then ever go figure I've never been this low of a number
last 2 tests .0686 and .0181 !!
#6
Posted 10 March 2016 - 03:21 PM
For heart issues I would try adding several minerals: potassium, magnesium, phosphorous, & calcium. All may not be the issue, but nothing wrong with a little extra of these. Potassium has a large role in heart electrical signals.
http://www.webmd.com...-and-your-heart
For muscle cramps potassium helps me better than any other minerals, but magnesium may also be useful (small dosage).
Overall, potassium shortage may be the most significant mineral issue with TKI drugs.
Edited by Trey, 10 March 2016 - 03:23 PM.
#7
Posted 10 March 2016 - 03:48 PM
For heart issues I would try adding several minerals: potassium, magnesium, phosphorous, & calcium. All may not be the issue, but nothing wrong with a little extra of these. Potassium has a large role in heart electrical signals.
http://www.webmd.com...-and-your-heart
For muscle cramps potassium helps me better than any other minerals, but magnesium may also be useful (small dosage).
Overall, potassium shortage may be the most significant mineral issue with TKI drugs.
Trey - do you have a reference for this:
"Overall, potassium shortage may be the most significant mineral issue with TKI drugs."
I was told explicitly at M.D. Anderson that Magnesium shortage is the most significant issue with TKI drugs (greater depletion) and that potassium (as well as phosphorus and Calcium) are more readily available.
I'd love to read up on where you learned that k shortage is more important.
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"
#8
Posted 10 March 2016 - 04:45 PM
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.
#9
Posted 10 March 2016 - 05:19 PM
I am sceptical of blood mineral measurements, so I think patient experience is more useful than doctor measurements.
It is my experience, trial and error with what works for me, that leads me to conclude potassium has the most impact on me personally. A potassium pill resolves muscle cramping within a couple minutes, every time. And when I golf on hot days in the summer and don't take a potassium supplement, the cramps often occur. No other mineral is so successful or works so quickly for me. I tried magnesium alone and it did not work for cramps. So that is how I came to conclude that potassium is the major issue there.
Bananas are only a mediocre source of potassium. Potatoes, beans, leafy vegs, and yogurt are better. But overall supplements are the best way to deal with the issue. I just use low dosage Walsharts supplements.
Regarding heart palpitations, IF it is a mineral shortage issue, potassium is very important for heart signalling, and we know it is an issue for us. If people do some trial and error with individual minerals, they can hopefully shed more light on this issue as well. Magnesium may also play a role, and I think taking it is also a good idea.
#10
Posted 10 March 2016 - 07:10 PM
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
Cancer Sucks!
#11
Posted 10 March 2016 - 09:20 PM
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
#12
Posted 10 March 2016 - 11:34 PM
#13
Posted 11 March 2016 - 01:20 PM
They are impossible to swallow and they cause my already horrible acid reflux get much worse.
I take the thin elongated type and they go down very smoothly. I always take them with a meal, which avoids any stomach reaction.
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