How much tonic water and how often for muscle aches/pains? Hem/onc said to try it, but didn't say how much. I've really been drinking only what I can stand-- doesn't taste so hot.
Tonic water, how much?
Started by
tiredblood
, Sep 21 2017 08:00 PM
9 replies to this topic
#2
Jan0080
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Posted 21 September 2017 - 11:35 PM
Tired - I had bad leg cramps and was told to take tonic water. Worthless
If you are getting a good response, reduce your dosage.
Diagnosed Dec 27, 2016 started Sprycel 100 mg Jan 7, 2017. Initial PCR 77.9 after 30 days 28.4, day 79 1.4 and day 115 0.1%. That is a 99.9% reduction! Sprycel 100 mg for 3 months, 80 mg for 1 month and now at 50 mg. Hooray for Sprycel!!! PCR June 5, 2017 0.04! Dose reduction to 40 mg 6/15/2017 due to shortness of breath. 20 mg as of June 29th. PCR .02 9/11/2017. PCR .015 IS as of 12/11/2017. Lungs substantially better. Low dose Sprycel works!
Adverse Effect - At about week 6 of Sprycel sharp muscle pain that would start at 2 AM and last for about 4 hours. This lasted about 4 weeks and went away, thank goodness.
Adverse Effect - At about week 6 of Sprycel sharp muscle pain that would start at 2 AM and last for about 4 hours. This lasted about 4 weeks and went away, thank goodness.
#3
kat73
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Posted 22 September 2017 - 10:10 AM
Oooh, I LOVE tonic water! Especially with lime. And gin. Maybe you just haven't drunk ENOUGH for the pains to go away . . .
Sorry, not being serious here. Bad me. I don't know the answer to your question and I should shut up.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#4
tiredblood
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Posted 22 September 2017 - 06:33 PM
Honestly, I find it ineffective, too, much like everything else. I'm considering taking what remaining tasigna I have on hand just to rotate and get some relief from Gleevec-specific SE.
#5
kat73
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Posted 23 September 2017 - 09:29 AM
In my experience, I have never once found relief from any suggestion from any doctor for any of my side effects. Not once. Seriously, I don't know what they're smokin'. The only thing that ever helped was stopping the TKI.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#6
ROMO
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Posted 23 September 2017 - 04:39 PM
Me to. When my Onc ask me how I'm feeling and then I start
to answer he looks at me like his cell phone is ringing.
Then when I'm through talking, He gets up tells me to lie
down and proceeds to push his hands into my abdomen for a few
minutes and then tells me to make another appointment with the
receptionist. And walks out.
No customer service there!
About the tonic water, I heard that your suppose to pour it over your
head and chant Nomyohhorengayhoe three times then let the dog out.
When the dog comes back in, it worked.
It's works better if the tonic water is also holy water. Holy Tonic Water.
When I was into a very bad fix with side effects and toxicity like the
shivers, long bone pain, muscles spasms, and rash, I took a bath.
A very hot bath with a paperback book, a bottle of Gatorade, and an hour.
I always felt a little better.
Romo
DX August 2016. WBC ~160K
PH+ Cells 36%
No Spleen enlargement
No Symptoms. Other counts ~Normal
BCR-ABL p210 (Detected)
BCR-ABL p190 (Not Detected)
Sprycel 100mg.
PCR 02/01/2017 0.146 IS
PCR 08/07/2017 0.022 IS
Next PCR: 12/XX/2017
#7
Pin
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Posted 23 September 2017 - 06:15 PM
Magnesium taureate was the main thing that worked for me - at Scuba's suggestion, I did find it gentler on my stomach than the other versions. I also use calcium phosphate which helps a small amount. When I was on Gleevec I couldn't miss a day of magnesium or I would know about it within a few hours 
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
#8
lulusflyin
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Posted 09 October 2017 - 12:33 PM
Alas I agree with ROMO - a hot epsom salt bath and good stretching afterwards seems to be the easiest relief. Or a heating pad on the affected area if you don't have the time or means. Also, keep active and try to stretch regularly. Maybe splurge for a gentle massage or acupuncture once in awhile. No luck for me taking magnesium supplements. I'm on Sprycel 80 mg. Good luck!
#9
tiredblood
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Posted 09 October 2017 - 05:15 PM
My husband just told me that two people today told him about their relatives that were prescribed Claritin for chemo-related bone pain.
#10
tiredblood
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Posted 09 October 2017 - 05:43 PM
My husband just told me that two people today told him about their relatives that were prescribed Claritin for chemo-related bone pain.
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