Advanced Member
Posted 09 December 2017 - 11:30 AM
"Something else."
The years of experience have been accrued in an era of full strength doses; only fairly recently has there been a wave of dose reducers. What happens when you barely wave the TKI over the martini glass over the course of 10-20 years? Maybe it stops working? Maybe CML advances? Even Dr. Druker himself told me he "worries a little bit" over very low doses creating resistance ultimately.
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.
Advanced Member
Posted 10 December 2017 - 12:27 AM
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
Cancer Sucks!
Member
Posted 10 December 2017 - 11:37 AM
I normally don't partake of these types of discussions, however please allow me to chime in.
I love my CML.
Here's why, I was born or grew up a pessimist. Everything in life was bad or going to turn out badly, etc.
Now I am choosing to be an optimist. I was first told I had two to four months to live back in 2009 (wrong diagnosis).
It used to be every day was dreaded, now every morning which I wake up is a gift from God.
I LIVE every day, I LOVE every day, I ENJOY every day.
I choose to thank my CML for causing me to LIVE LIFE & ENJOY LIFE!
I'm a better man, father & husband because of CML.
It's MY CHOICE!
I hope you all have a wonderful Christmas and great New Year (or whatever Holiday you observe)
Advanced Member
Posted 10 December 2017 - 08:19 PM
I normally don't partake of these types of discussions, however please allow me to chime in.
I love my CML.
Here's why, I was born or grew up a pessimist. Everything in life was bad or going to turn out badly, etc.
Now I am choosing to be an optimist. I was first told I had two to four months to live back in 2009 (wrong diagnosis).
It used to be every day was dreaded, now every morning which I wake up is a gift from God.
I LIVE every day, I LOVE every day, I ENJOY every day.
I choose to thank my CML for causing me to LIVE LIFE & ENJOY LIFE!
I'm a better man, father & husband because of CML.
It's MY CHOICE!
I hope you all have a wonderful Christmas and great New Year (or whatever Holiday you observe)
Member
Posted 10 December 2017 - 10:40 PM
Awesome! And from a fellow 'Busa owner.
Or it could stand for:
B-ald
U-gly
S-hort
A-$$hole
But I did have one when I got this nickname 
Advanced Member
Posted 11 December 2017 - 12:52 AM
Advanced Member
Posted 11 December 2017 - 12:49 PM
This might be a dumb question, but the link states he has Chronic Mylogenous Leukemia. Is there a difference between Mylogenous and Myeloid? I have seen it both ways. Is it interchangeable? Thanks.
11/29/2013 Diagnosis PLT 538 K/uL HGB 6.2 G/DL, HCT 18.5% WBC 557.00 K/uL Enlarged Spleen
Sprycel 100 MG
Hydroxyurea initially 4 capsules daily
By 4/2014 PLT 27, WBC and RBC Low. Off Sprycel for 3 weeks
After 3 weeks, blood counts normal, no mutation, back on Sprycel 50 MG
5/2014 PLT too Low off Sprycel 4 weeks
6/2014 started Tasigna
Side Effects- Nauseous, Headaches, Tired
8/2014 second opinion Mass General CML Specialist
Continuous transfusions of RBC, PLTs and NEualasta to temp increase blood cells to fight off infection.
Remain on full dose Tasigna
Major p210 International Scale
05/11/2015 0.0950
09/08/2015 0.0782
01/19/2016 0.0310
04/28/2016 0.0161
07/25/2016 0.0244
11/04/2016 0.0140
02/06/2017 0.0129
05/23/2017 0.0087
Today 0.0000
Be well, Diane.
Advanced Member
Posted 11 December 2017 - 01:18 PM
This might be a dumb question, but the link states he has Chronic Mylogenous Leukemia. Is there a difference between Mylogenous and Myeloid? I have seen it both ways. Is it interchangeable? Thanks.
interchangeable.
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"
Advanced Member
Posted 11 December 2017 - 05:34 PM
Advanced Member
Posted 11 December 2017 - 07:28 PM
Advanced Member
Posted 11 December 2017 - 08:57 PM
This might be a dumb question, but the link states he has Chronic Mylogenous Leukemia. Is there a difference between Mylogenous and Myeloid? I have seen it both ways. Is it interchangeable? Thanks.
In olden times I think it was also referred to as Chronic Granulocytic Leukemia.
Kirk
2015 0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%
2016 0.041%, 0.039%, 0.025%
2017 0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%
2018 0.233%
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