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Posted 10 September 2015 - 09:44 AM
Congrats, PhilB. . .
Good luck with your lowered dosage regimen. I'm on half dose Sprycel, and there's definitely been a reduction of the rashes that come with Sprycel. Hopefully you'll find that eventually your side effects are reduced. Aside from that, it just feels good to have only half of the toxins going into one's body.
All the best,
Marnie
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Posted 10 September 2015 - 07:11 PM
Congrats Phil,
It's a bit scary for the first couple of tests till you know the status quo isn't going to change. 
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Posted 10 September 2015 - 11:48 PM
Had another chat with my haemotolgist recently - She suddenly forgot what she said last time about me having a drug break and still thinks lowered dose may cause resistance, hence I am not allowed to try either unless I pretend I want to have a baby immediately (which I don't, yet), then it's totally fine to have a break 
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
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Posted 11 September 2015 - 12:57 AM
What were your last lot of figures Pin?
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Posted 11 September 2015 - 02:54 AM
HiPhilB, Nice to hear from you good luck with your dose reduction I'll keep my fingers,toes,eyes, ankles and anything else that will cross (or should I say anything else that still crosses) for a good pcr for you.
It's funny that you checked in today, because believe it or not Ron caught the mole 2 days ago! It was Feb 12 when I saw it we never saw it again until a couple days ago, it was in my utility room. How can it be the same mole after all this time, I keep reading that moles do not go into houses, well evidently this little bastard isn't reading the same books I am. Forget humane capture we murdered it .We just got a new furnace and central air maybe he thought this was a mole resort, warm in winter and cool in summer. Now I'm afraid the owl will come back too. Warm wishes to your family, Sincerely Billie
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Posted 11 September 2015 - 07:27 AM
PhilB
Well that's good news keep us posted on your progress! It's good to hear more people get to do this dose reduction!
Fingers crossed and best of luck Phil
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 !!
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Posted 11 September 2015 - 09:40 AM
1. I've been cutting tablets in half to use up my existing stock and can confirm that Glivec tastes horrible. A big shock after 6.5 years of taking whole tablets.
2. 100mg tablets are far too small. The 400mg is reassuringly chunky and you can believe in it. 100mg is a silly little tablet that can't possibly work against something as big and scary as Leukaemia.
Been taking 4x100mg tablets for a few years now, they do indeed work, at least for me
Oh, and as for the taste of gleevec, yes, it tastes like something you would use to wash your clothes with.
Good luck with your reduction
Advanced Member
Posted 11 September 2015 - 02:11 PM
It's funny that you checked in today, because believe it or not Ron caught the mole 2 days ago! It was Feb 12 when I saw it we never saw it again until a couple days ago, it was in my utility room. How can it be the same mole after all this time, I keep reading that moles do not go into houses, well evidently this little bastard isn't reading the same books I am. Forget humane capture we murdered it .We just got a new furnace and central air maybe he thought this was a mole resort, warm in winter and cool in summer. Now I'm afraid the owl will come back too.
What!!!! Do you have any idea how long it took Trey and me to train that mole?
We have loads more in training, but the sodding owl keeps on eating them rather than delivering them - hence the long gap from Feb to now. Please do NOT murder the next one or I may not be able to persuade Trey not to try plan B. (for Buffalo).
Advanced Member
Posted 11 September 2015 - 07:12 PM
I've got my large, unblinking eyes on you, Phil.
^HOOT^
v
Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.
Rx: 03/2012-Gleevec400. Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).
Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.
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Advanced Member
Posted 11 September 2015 - 10:42 PM
What do you guys got going a mole corral? I can see it now an electrified fence to keep the moles in and a Beware of Mole sign on the gate, then you implant little gps units in them and they come straight to my house. And a big fat owl sees that they arrive at the right place.
If I see a Mossafalo I'm moving. The thought of that mole in this house all that time gives me the creeps, at least he must have been housebroken I haven't seen any evidence yet.
Al I wouldn't hurt your owl you live too close to me and I wouldn't want to be subjected to "The Wrath of AL".
Is Mossafalo a word 
What would you call an animal that is half Moose and half Buffalo I think Trey has a picture of one.
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Posted 12 September 2015 - 11:00 AM
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Posted 12 September 2015 - 02:34 PM
Gee thanks Gail, I needed that! We might have a mole massacre at the Murawski household.
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Posted 12 September 2015 - 09:14 PM
Our cat used to leave us voles as gifts on our back porch, but not lately. I guess the hawk that hangs around our neighborhood may keep the population under control too.
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Posted 12 September 2015 - 09:38 PM
Tiredblood, Can I borrow your hawk.
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Posted 12 September 2015 - 09:52 PM
Sure, it is quite the hunter.
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Posted 16 September 2015 - 04:02 PM
Hmm. So after my onc wanting to test after 4 weeks and me explaining that would really be 6 weeks by the time we got the results, the hospital just sent me a letter postponing my appointment for another 2 weeks. I have enough G to see me through by cutting my old 400mg tabs in half, so no practical issues with this, just a question of what I think is sensible. Do I go with it as an 8 week trial before seeing any numbers, or do I phone them up and try to persuade them to keep the original schedule with any replacement doctor who can sign a prescription as the key person interpreting the results and deciding what to next is me?
Any thoughts? I'm inclined to go with the flow, but is 8 weeks pushing my luck?
Advanced Member
Posted 16 September 2015 - 04:33 PM
PhilB - I vote for the 8 weeks. Reason #1: If you call back, the whole thing may (will) get fubar'd and you'll end up showing up and there's NO appointment. Reason #2: You're extremely unlikely to be harmed and the extra time will give more solid data.
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 16 September 2015 - 04:53 PM
PhilB,
Since you already started the dose reduction I would stick with what you are doing and go with the extended test schedule. At your -4.5 log there is not much hazard in such a small slip in testing since you are still taking enough drug to have an impact. Your real question at this point is whether the 200mg will be enough drug to keep the PCR steady or driving downward. It will likely take well beyond 8 weeks to figure that out. So I don't see a practical reason for pushing for earlier testing since you probably would not do anything about any potential rise in the next PCR until a second PCR confirms the trend (unless the first PCR is a big jump up, which is unlikely).
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Posted 17 September 2015 - 03:34 AM
Thanks guys. That was my feeling, but it definitely decreases the stress levels to know that Trey in particular concurs. (Of course he may be trying to bump me off...)
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