3 replies to this topic

[Tom1278]

Hi all,

I need some feedback from you all because my doctor is less than helpful.  I'm currently on 400mg Gleevec.

	7/25/2012	10/17/2012	1/23/2013	4/23/2013	7/23/2013
	Marrow	Blood	Blood	Blood	Blood
FISH	97.0%	71.0%	4.0%	1.2%	0.8%
FISH Cell Counts		213/300	12/300	6/500	6/800
PCR - Lab Scale	162.9%	71.0%	10.2%	8.3%	4.0%
PCR LS Log Reduction		0.4	1.2	1.3	1.6
International Scale Multiplier	0.89	0.56	0.56	0.56	0.56
PCR - International Scale	145.0%	39.7%	5.7%	4.6%	2.3%
PCR IS Log Reduction		0.6	1.4	1.5	1.8

As you can see, the FISH is still not 0%, even though it is now 12 months.  For some reason also, the lab keeps increasing the number of cells sampled, so I don't know how valid comparisons between tests are.

After 3 days of trying to get my doctor to call me with the results, he ended up leaving me a voicemail stating my PCR went down, everything is fine, and he'll see me in 3 months.  Well, he neglected the FISH results, and I had to find someone at the office (after 3 calls) to FAX me the lab report.  The doctor still hasn't called me back after I left another message this morning, even though the receptionist said he'd call me as soon as he got off the phone with another patient.

That being said:

(1) Should I immediately schedule a second opinion?  I know the FISH is very, very low, but it is still outside the 0.4% range of error (per the report).

(2) Does anyone know of a competent hematologist in the DC Metro area who is knowledgeable about CML?  I could go to Dr. Smith at Hopkins, as Baltimore is fairly close, but I'd prefer to stay local if possible.

Thanks,

Tom

[CallMeLucky]

Tom,

You're doing ok, your disease in under control and you are not in danger of progressing, your trending downward.  That being said your response is not speedy.  Will you get to MMR (3 log reduction) by 18 months?  Maybe.  If you don't it doesn't mean you will be in any imminent danger it is just not "optimal".

I can tell you that if it were me, I would probably get the second opinion and regardless if you get the second opinion or not, I would likely ask to switch to a different drug.  You have to take certain things about yourself into consideration like how you feel on Gleevec, but all things being equal I would want to switch to something stronger to help push it down quicker and ensure the MMR by 18 months.

I don't know anyone in that area but if you come up north to NYC I can put you in touch with a great CML Dr.  If interested let me know.

Keep in mind that you're responding to the meds and your numbers continue to go down, which is the most important thing.  From that standpoint you are doing very well.  The only question is if you could be doing better on a different drug.

[Trey]

The goal for an acceptable response is CCyR by 18 months.  You should meet that easily.  Your FISH and PCR seem to correlate pretty closely as "nearly CCyR".

[thomaskk]

Hi Tom

I was going through your old posting with numbers ...How are you doing now ?

Thomas