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Slow but Steady, I think.......

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#1 Johnc


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Posted 15 February 2013 - 09:05 PM

Dx 4/11/12 with 258kwbc, took Gleevec for 4 months.

7/12   -0.025 log(I wanted to stay on Gleevecs and Onc wanted to change to Tasignia or Sprycell so we gave it one more month)

8/12   -0.65 log(Onc then moved me to 100 mg Sprcell - better results but not good enough)

The doctor switched me to 100 mg Sprycell late on month 4.  I had to be taken off after 3.5 weeks due to low platlets. Dropped dosage to  70 mg and lasted 7 weeks until platlets tanked and came of meds. I made apt with Onc to see what the game plan was and he said it is time to see a specialist and admitted he may at most only see 1 or 2 patients with CML a year(I should have quested this early, but taking a pill and having blood worked seamed simple for any doc to monitor) I was referred to Cleveland Clinic which is one hour away and was hooked up with a really great compassionate  Onc, Dr. Duong

She wanted to see where I was at on my progress and did a full write-up: Bmb, PCR, mutation analysis, CBC(in depth analysis of red blood cells before(retic count) putting me back on Meds.

I came from a big hospital out of Akron and thought they were good but in two weeks of the CC there is no comparison. Dr. Duong  has actually called me up personally to talk to me on three separate occasion. Her staff has contacted me three times to clarify things. I CAN'T BELIEVE THE DIFFERENCE IN THE TWO HOSPITALS and the customer care I have received. They actually have a hospital liaison that met me at my first appointment and told me it is one  stop shopping, any problem anywhere she is contact person and will get results - WOW!

Today I had a bmb and it was a breeze the physician assistant does a 1,000 of these a year and she was 10 times better than my Akron Onc and did it in half the time.  I also got my latest PCR number that was

1/13 -1.64 log reduction)I am very surprised as I was off Sprycell for a total of 8 weeks this must bee some strong stuff.

I just wanted to share my progress and my experience at the Cleveland Clinic just in case others on this board live close by.  I also was apprehensive about having a new Onc, but Dr. Duong is excellent and I have been blessed getting her as my Onc. I asked about a game plan when platlets tank and how low she will let them go. Her response was in the 20k range is fine and If I  read her correctly, no more drug breaks it will be stim shots and/or transfusions should numbers head south.  She would not directly come out and say that but I think that is the plan.

I think my log reductions are a bit slow but projecting them out to a -3.00 log by this October appears reasonable.

Any comment on your similar situation and results dealing with drug breaks, stim shots or transfusions would be appreciated.



#2 OhRose


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Posted 15 February 2013 - 10:08 PM

Hi John, I do not have any experiences such as yours but wanted to jump on the bandwagon for Cleveland Clinic. Most people think it too big to care but it is incredible in the personal service they give. My hubby had cancer surgery there and we were very impressed. I have leukemia and am pleased with my onc but would in a minute feel comfortable going up there (4hr drive) for a second opinion if needed. Thanks for sharing your experience

Hang in there. Sounds like you now have a good Dr and are in good hands. Though it should have happened earlier, at least you had an onc who knew his limits and did refer you out to a great place. God bless..


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