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Latest Blood Test Results BCR/ABL1 .

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Just got the results from Oct 31st. 2019

BCR/ABL1 :  .1314 ( on 20 MG Daily of Sprycel) from  .386 the  end of August.

A decrease of .2546

BACKGROUND: Diag with CML  Feb, 2018.

* May 2019 Stopped 50 MG daily of Sprycel due to bad side effects, especially Plural Eff in right lung. 

Off of all meds for approx 37 days: * Prior blood tests on 50 MG of Sprycel were Excellent : BCR/ABL1 & FISH : NOT DETECTED

June 2019 : Only on NEW  lower dosage of 20 MG of Sprycel for 21 days:  BCR/ABL1 shot up from NOT DETECTED  to 1.164

August 30th, 2019:   BCR/ABL1 = .386 ( on 20 MG of Sprycel for approx 60 days)

Now it is down to .1314 after another 60 days of 20 MG Sprycel.

*WBC/ CMP/ LIPID /and PSA all came back in normal ranges also*

Only waiting on the FISH test results sometime this week.

All the best to all!

Chuck.

 

 

 

 

 

 

On the cusp of MMR - fab! Onwards and downwards 😃.

David.

Just got the BCR/ ABL1 ONCOLOGY :  FISH results from 10/31/2019.

FISH (IS) : 200 Cells: Negative, Not Detected!

( Prior results were 2.5% June & 1.5% August  2019)

Looks like Scuba is right: Less is better, at least with SPRYCEL.

I had terrible side effects especially with Plural Eff. on the 50 MG of Sprycel from DEC of 2018 to June of 2019  now its like a new life on the 20MG daily of  Sprycel with hardly any side effects at all from July to now and all blood test results are getting better each time!

Chuck.

Chuck - This is great!  I actually got a mumbled sort of growly apology from my onc the last time, saying he was impressed by how I pushed him into a new way of looking at 20 mg.  Now, if we could just get a paper at ASH saying what we all seem to suspect:  with dasatinib, less is more.  As far as I'm aware, all "low dose" studies are about 50 mg or sometimes 40 mg.  They mention 20 mg only in passing, as a few outlier patients, anecdotally.  I would rather be a datum than an anecdote!

Thanks Kat.

I started at 100MG of Sprycel when first diagnosed in Feb 2018

That lasted about 3 weeks with horrendous side effects.

I have a bi-level home and I could not even go up the seven steps to the landing let alone try to make it  to the second level.

Felt like I ran a 26 mile marathon!

The dosage was lowered to 80 Mg, but again after a few months the same terrible side effects continued.

Shortness of breath, lack of appetite , no energy etc. plus developed a real bad case of Plural Effusion in my right lung.

Medicine was lowered to 50 MG around June of 2018 and was doing ok on it for some months and was getting great blood test

results- both BCR/ABl1 and FISH (IS)  were NOT DETECTED etc but the same side effects got progressively worse so that by this MAY I had to stop

the Meds for over a month to clear my lung of fluid etc and came very close to having the fluid extracted!

Since being on the 20 MG, as mentioned in my above posts,  everything is working out great so far!

Plural Eff is almost completely gone and quality of life has been greatly changed for the better plus I have also gained  10 lbs of weight back from the

25 lbs I had lost from Feb 2018 to May 2019 due to lack of appetite. 

Again,

All the best to all!

Chuck.

 

 

 

 

 

 

Blood Test Results from Jan 30th, 2020.

Bcr/Abl1 CML/ALL, PCR Quant:   NEGATIVE  for BCR-ABL1   :  <0.0032%   :)

Oncology BCR/ABL 1 FISH: Normal- NO BCR or ABL 1 Gene rearrangement Observed.

WBC: 7,600.

RBC: 4,62

RDW: 13,800.

Platelets: 192,000.

* Diagnosed with CML exactly 2 years ago on Feb 12, 2018 @ 100%.*

After Sprycel dosage reductions from 100 MG to 80 MG to 50Mg and finally 20MG because of bad side-effects, the 20MG has been the magic number!

Took over 6 months on the 20 MG of Sprycel to get back to NOT DETECTED, but the side effects have been minimal to say the least!

I can function normally with very little shortness of breath, fatigue and plural effusion! 

All the best to all!

Chuck.

   

 

Chuck - that’s awesome! Add another one to the 20mg dasatinib club that’s doing great!!

I’m really happy for you!

David. 

Cool. You know I am not surprised!

(Kat - I believe there were several papers at ASH on low dose sprycel's effectiveness (20 mg). I'll have to find them again)

Thanks Scuba!

I am so glad my oncologist agreed with me to ride this past six months out by staying with the 20 MG  Sprycel  dosage than trying a different Med.

20MG, so far, seems to be the magic number to get everything in sync!

Chuck.

 

Hi Scuba, 

Do you have a link to these ASH papers that Sprycel 20 mg is effective as my dad has similar case and would like to share it with his doctor,