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Hi all, 

CML Support UK looks like a great resource. I am happy to recognize a lot of people from the previous US - LLS forum.  I'm not sure where to jump in here, so I'm starting a new thread. 

(I'm not a tech savvy dog so please excuse my muddy footprints.) 

Here's my condensed history

 

Aug 1, 2017,  Diagnosed CML. PCR 100% IS

Aug 4, Started Dasatinib 100mg

Aug 30, One week drug break due to Myelosuppression

Sept 8, Resumed 100mg every other day on oncologists orders

(could not handle 100mg daily and had coincidentally received 30 day supply of 100mg tabs, so onc put me on 100mg every other day. this was not a good idea.......)

Nov 7, consult with new oncologist

Nov 9, start taking Dasatinib 50mg daily

Nov 16, first appointment with new oncologist

Nov 25, start taking Dasatinib 70 mg daily

Nov 30, PCR 14.8 IS

Jan 4 2018 PCR 2.64 IS

CBC every two weeks.

Typical out of range items include,

WBC 3.7

Hemaglobin 13 – 14

Hematocrit 39

RDW 16

Platelets 90 -110

 

I've been on 70mg for 96 days now. My next PCR is scheduled for April 4. I have high hopes for being on the right side of the decimal point when I get the results.

I am also hoping for a reduction to 50mg Dasatinib daily assuming the new number is good. 20mg daily also on my wish list....... 

I've been feeling really good for the last few weeks, so I have my fingers crossed. 

Thanks to everyone who makes this possible. 

Riggered

 

Hi Riggered - Good to see you over here.

I check the new LLS site from time to time, but prefer this site. As more of you come over, it will add to the rich diversity of experiences and insight already here.

I do notice a greater appreciation and willingness to share on nutrition as well as alternative ways to add to our treatment. One size does not fit all. Not everything will be proved or discovered through clinical trials. Sometimes laboratory science can show the way.

I encourage your attempt to get your Sprycel dose down to 20mg. If it works at 20mg - that would be terrific. As you know, I am at 20mg, but  suspect I am also PCRU because I have added Curcumin and vitamin D3 to my protocol. I am eager to stop Sprycel and test my remission durability. When I attempt that - I will report my progress here. Intriguing ideas on fasting and how it can expose LSC's to apoptosis. Read on.

I had hoped Trey would come over, but he is parochial and determined to improve the LLS site. I suppose he feels it is his home. I gave up trying. Sandy and Dave over here have been terrific. I"m sure they will welcome you.