13 replies to this topic

[Aussiegirl]

Are the BCR/ABL blood test and the FISH test the same thing or are they each looking for for something different. I have had CML for 2 years this month and am be treated with 400 mg Gleevec. When I had my blood drawn today the tech checked and my Onc hasn't ordered a FISH test for at least a year only the BCR/ACL. I also found out the lab they send it it to is intergrated Oncology formerly Labcorp and Genzyme. Any Thoughts on this lab? Also I learned that the blood sat in the lab for at least 5 hours unrefridgerated waiting for a patholygist to review it before sending it out will that effect the test results? He tells me I am in remission even though my white counts have never dropped below 15.0 to 16,000.

Also my last  2 CBC's show I am Anemic yet he is not treating it. Are any of you being treated for the anemia? Are any of you being treated for the edema with a water pill as mine is really bad. He pretty much blows off my side effects of the gleevec. The problem is both effect your breathing and I already had COPD and since I have been on the gleevec I had to go on O2. TIA you all have been really helpful. Its clear I know very little about my illness shame on me but honestly the denial was working for me for a long time not so much any more. I am just sick and tired of beoing sick and tired.

[jrsboo]

Wow,

I would run, and not walk, to another oncologist.  Yes, I am on a diuretic for the swelling, although I take Sprycel and not Gleevec.  What concerns me more is your continued level of WBC, and lack of support for side effects.   But I am not a doctor, maybe someone with more medical knowledge than I can chime in.

Caroline

[GerryL]

Hi Aussiegirl.

What state do you live in? I'm in Queensland.

[Aussiegirl]

Gerryl  I am in Missouri my mum is from Sydney but I am still 1/2 Aussie lol

[Susan61]

Hi:  I agree with Caroline, and I am not good at explaining all the particulars. I do know that you need to see a new Oncologist and start from square one with posssibly a BMB, and a PCR test to see where you are at.  It does not sound like you have even gotten to a cytogenetic response with those counts.  As for the Anemia.  I have had it for years, and they have checked my Iron etc.  All that is normal, and they just keep an eye on it.  It does depend on how low your RBC and Hemoglobin is though.  Go get another opinion, and switch to somebody who treats hundreds of CML patients a year.  Some of these doctors do not know enough about CML to be treating a patient for it. 

Don't let it go any longer the way its been.  Get an appointment somewhere this week if you can.

[GerryL]

Won't be able to help you with docs then LOL.

By the sound of it you should change docs - you're going to be spending a number of years with them, so you need to be happy with them. My doc put me on iron tablets to help with the anemia, though I still run at the low end of normal, but when I was diagnosed I had no iron stored in my marrow. I have also been prescribed a fluid tablet to help with the water retention.

Hopefully I have this right - fish tests are normally done until you reach CCyR, then BCR tests take over from there.

[Trey]

Your Onc is testing you using PCR (BCR-ABL test), which is standard procedure.  FISH can also be used, and is often a better test until the patient reaches CCyR.  But after CCyR only the PCR is useful.  So your Onc may be using good procedures, but you will need to first understand your level of response. 

http://community.lls.org/docs/DOC-1273

You can educate yourself a bit so you can ask the Onc questions:

http://community.lls...ttype[document]

[Aussiegirl]

thanks Trey the links were very helpful.

[KerriD]

What part of Missouri are you in? I am in the Kansas City area and I have a very good onc/hematologist.

[Aussiegirl]

I am clear on the other side just outside St Louis thinking of switching to Siteman Cancer center at Barnes but it is a 1 hour drive and expensive parking and they are very busy. Any suggestions would be helpful. I am due at my current one the 28th to get the results from Mondays draw. He will be seeing a much more informed  patient this time.

[KerriD]

I just sent an email to my onc here in KC asking him if he would be able to reccomend someone in the St Louis area,  I will post it here as soon as I hear from him.

[KerriD]

Here is who my onc reccomended.  I hope this helps. John DiPersio, MD, PhD Medical oncologist, bone marrow transplant specialist SitemanCancerCenter/WashU-Dr.DePersio or his colleagues(they are Leukemia-StemCell specialists) http://www.siteman.w...l=CDR258006.xml

Appointment: 314-747-7222 - Toll Free: 800-600-3606

[Aussiegirl]

Thanks I figured Siteman was probably the best.

[hannibellemo]

Where do you live near St. Louis? I grew up in Hannibal but lived outside of DeSoto (by Washington State Park, if you know where that is ) for 10 years. I wouldn't recommend anyone in that area. Siteman is where you need to be.

Good luck!

Pat