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LLS CML webcast today

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#1 snowboots


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Posted 21 May 2015 - 08:25 PM

Just wondering how many of you caught the CML webcast today on the LLS website. Very informative and timely - I had an appointment with my hemo/onc this afternoon. So questions were very fresh on my mind. One thing that stood out from the webcast is that Dr. Shah said that it is standard procedure to have a PCR test done after your first 3 months of treatment. My 3 months is coming up, so I asked the doc about this.

Previously he had told me that he would do one 6 months to a year after starting the Gleevec. Today he said that "protocol" has changed and they now recommend the 3 months, and he will do one. However, he does not necessarily agree with this saying that if you are not showing significant results, they are to switch you to one of the other meds.He does not feel that 3 months is enough time to properly evaluate. So he would give me the option to continue Gleevec since I am having no adverse effects from it. He had just had a meeting with a Tasigna rep who of course is pushing for a switch as early as possible if the patient is not showing almost immediate results. My doc said you need to be careful about taking various researchers at their word  - the doc from the webcast was from the University of California. My doc consults with a CML specialist from Johns Hopkins who does their own research also, and sometimes they come up with different recommendations. So I actually feel better about my own doc now that I understand where he is coming from. He said that if he had 100 CML patients, probably less than 5 would ask all the questions that I do! But, he said it keeps him on his toes and although he treats other blood cancers, he does have a CML expert in his back pocket. Just another chapter in my personal saga....

By the way, they said that today's webcast would be available in a few weeks at www.lls.org/programs .

#2 Gail's


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Posted 23 May 2015 - 11:50 AM

Thanks for the info about a repeat of the program. I learned of it on the 22nd when I went to the LLS site for info about the walk event coming up near me in the fall. Several of my sympathetic co workers said they would participate if there was a team for our office. Hard for me to judge how I'll feel then but am looking forward to the event in whatever way I can participate.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

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