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Very Slow Response,withBCR ABL. Only 25% after 7 months. Very worried.

Diagnosed CML Dec 1,2017.  WBC were 303,000...normal range 3.8 to 11.  Platelets 742, normal range 140-450. In this community hospital treatment not available until after the weekend and i requested transfer to Mayo Clinic.  Mayo started treating me when I arrived at 3am. Smartest move I ever made.

I am a Mayo patient. I see my Oncologist onThursday, June 28. He has the recent result and wrote to me that he is consulting with the group head.

The  BCR-ABL I have records of are

Feb 12  53.0467  int scale

feb 28    34.8439  int scale

June 19   25.3466  int scale

 

I have not achieved 10% in these 7 months.  I am at 25%.

Started on Gleevac in December after diagnosis. I was switched after Feb 28 to Sprycel, 100 per day.  I was told I was resistant to Gleevac. Mayo did a Bone Marrow biopsy before shifting me to Sprycel. No mutations.   

Corpuscular blood as per CBC counts seem to be normal. Low platelets. Results Partly reproduced below. my worry is the BCR-ABL.Same lab.  Blood shipped from Mpks to Utah.  I have never reached 10%    Trend is downward. I have the usual Side effects.

Has anybody experienced anything like this? The BCR ABL slow, slow response. I can’t find anything on line . Comments welcome.

i do appreciate and value this group. Thank you everyone.

Gitel...who is an old lady.

 

white Blood counts  normal range3.8-11   On Sprycel 100

april 3   12.8

april 17  14.5

may1  7.9

may 13 9.4

may 29  8.6

june 12  6.8

june 19  7.4

Platelets  140-450 normal

april 3   321

may 1 230

may 17 219

may29  171

june 12149

june 19  129

 

 

 

 

 

 

 

 

 

Gitel I am not one of the experts on here but I just wanted to say, I am sure you are in good hands and best of luck for Thursday. Does the Mayo have a CML specialist ? I would be tempted to ask for a referral ? 

I hope you are able to have someone come with you to the appointment because two sets of ears ( and ideally one person taking notes) is so helpful. If it were me, I would review the other TKIs incase they suggest a switch so you know pros and cons of each. 

Please post how your appointment goes and in the meantime I hope there are others out there can answer your question.

best wishes Louise 

 

Don’t fret. You have the rest of your life to beat this.
You have beat many things before.
Your in good hands.
Give this some more time.

Romo

Thanks Louise.  Mayo Clinic in Rochester Minnesota has top expertise, they are a major research, teaching, medical center. Also a major Cancer center in the USA. Your cautions and suggestions are right on.  I am covered for all the good questions you raised. I’ll post after I find out what the next steps are.  Thanks for caring.

You are right Romo. I have to keep telling myself to give it time. I have read enough to know how atypical my response is to the TKI. However, the clinical knowledge and experience of the physicians in this weird situation is crucial. They will be able to lay out the next steps. It may be keeping on Sprycel and waiting, it may be switching. It may be something else. They may decide on another BMB. I am fortunate in having access to Mayo, and in having my insurance cover it. Thanks for the wise words.  Gitel, who has to get a grip!