52 replies to this topic

[acl]

Thank you Trey and Lucas for the response. Since I have not lost response to Gleevec, I am going to take 400 mg. Gleevec daily. My own decision. If Doc finds out, he will fire me, but he will never know! After some time, it will mess up my liver, but the Doc is going to change it anyway, and hopefully I will have reached Major Molecular Response, the Doc said that MMR is <.15. I am anxious to find out what my QPCR from June 5/15 is. The result was not back July 3rd. Thank you Trey and Lucas, I am eternally grateful for your opinion!

I apologize if my grammar is not perfect, I speak three different languages.

Trey, Lucas, scuba and everyone  Thank you!

[Trey]

Let me say again that you are on a plateau, and also you are taking low dosage.  But you are still at about 2.5 log reduction, so there is no concern here.  But hypothetically, a loss of CCyR would be a bad sign.

[Lucas]

above 1 - 1.5% is not cool. try not to worry much, if your response is not great, at least you had a complete cytogenetic response in a lower dose (i was on 400mg gleevec and never had a great pcr) wich is a very good place to be. good luck.

[acl]

Let me say again that you are on a plateau, and also you are taking low dosage.  But you are still at about 2.5 log reduction, so there is no concern here.  But hypothetically, a loss of CCyR would be a bad sign.

Trey, Thank you very much for your words of wisdom!

[acl]

Pcr tests can vary a lot. If you send the same sample for 3 different you'll probably have 3 different resulta. Don't worry about your grammar, i'm brazilian

Lucas, thank you very much for your opinion it was very much appreciated!

[acl]

Taking the additional dosage is a good idea since you seem to have worked through the low blood counts.  You should take full dosage if you continue to prefer to stay on Gleevec since you respond well to Gleevec as long as you take adequate dosage.  But you say you may be ready for a drug change now, so nothing wrong with doing that either.  But your blood draw done last week will not reflect the recent increase in dosage, so don't expect much change in results from that PCR.

Trey, Scuba, Lucas & Everyone, DX March 2014

BCR/ABL Q PCR

 

Dec.2014 0.72% IS

Feb. 2015 0.67%  IS.

April 2015 0.42%

May 2015 0.45%

Jun 2015 0.35%

July 3, 2015 0.24%

Aug. 17/15   0.22%

Good News!  Received results from my hematologist's nurse today. My BCR/ABL test result from June 5/15 is 0.35% IS. and that I don't have to increase my dosage of Gleevec, that I don't have to do anything! I asked her if she could let me know what the  result of the BCR/ABL is from July 2015. She said, yes, I will. Hopefully, I will have that result by the end of next week.  I have to take my 300 mg. Gleevec only! My next blood work and appointment with the Dr. will be August 17th. If I continue to take 400 mg. it will show changes on my next blood test. I felt much better when I took the 400 mg. I really appreciate your opinion! Thank you all very much.

[chriskuo]

Why are you getting the BCR/ABL test monthly?

[acl]

Why are you getting the BCR/ABL test monthly?

Chriskuo,  That's a good question, I don't know.

[scuba]

Your PCR test results are heading in the right direction. Your next goal is for your PCR to fall below 0.1% which is major molecular remission and a significant milestone in terms of likelihood of progression (very small). An increase in dose to 400mg will likely accelerate your PCR drop.

 

It is noteworthy that you are tested monthly. Normally you would be tested every 3 months.

[acl]

Your PCR test results are heading in the right direction. Your next goal is for your PCR to fall below 0.1% which is major molecular remission and a significant milestone in terms of likelihood of progression (very small). An increase in dose to 400mg will likely accelerate your PCR drop.

 

It is noteworthy that you are tested monthly. Normally you would be tested every 3 months.

Scuba, thanks for the note. I agree with you that I should be taking 400 mg. Gleevec daily. I did that for four days on my own, and actually, I felt better, but I am back to taking 300 mg. I am afraid that it will lower my platelets, etc. and he will know that I took more than he ordered. On 300 mg. daily it's going to take a long time to reach MMR. I have an appointment with him in 5 weeks, and I think that I will mention that I wonder if it's possible to increase my dosage for one month, so I can reach MMR sooner. Regarding the testing, it takes at least 40 days to receive the results, may be that's why he does monthly tests. They say that it takes 30 days, but it's 40! Thank you for your words of wisdom!

[Antilogical]

Regarding the time it takes to get the lab results:

 

My onc told me it takes several passes for each test.  Because they're time consuming & tedious to do, they don't run them until they get a bunch of them to make it worth somebody's time to do them.

 

For my tests, it has taken anywhere between 5 days & 3+ weeks to get the results.

[Sneezy12]

The Mayo Clinic Lab has the results within 4 hours. Frank

[acl]

Regarding the time it takes to get the lab results:

 

My onc told me it takes several passes for each test.  Because they're time consuming & tedious to do, they don't run them until they get a bunch of them to make it worth somebody's time to do them.

 

For my tests, it has taken anywhere between 5 days & 3+ weeks to get the results.

Antilogical, Thank you for sharing the reason for the amount of time it takes to get the results from the PCR blood test. I had been wondering why it took so long.

Sneezy 12, I told my hematologist that they do it much faster at the Mayo Clinic. He told me that there is a fee of $1000.00.

acl

[Marnie]

I have called the lab that does my PCR testing and asked about it.  Someone already mentioned this, but at most labs, they need to wait for enough samples to run a batch.  My lab has a 1-week turnaround.  I live in a metro area, which probably makes a difference.  Your doc probably doesn't know the lab's procedures, so it might be worthwhile for you to talk to them so that you know the process they use and can ask why it takes so long for the results to get back to your doctor.

 

It doesn't sound like your onc is following NCCN protocol.  PCR testing should be done every 3 months.  Have you questioned him about that?  I'm surprised that your insurance is covering monthly testing. 

 

Marnie

[Sneezy12]

Mayo Lab fee for bcr/abl is approx. $500. FISH is approx. $1000.

[acl]

I have called the lab that does my PCR testing and asked about it.  Someone already mentioned this, but at most labs, they need to wait for enough samples to run a batch.  My lab has a 1-week turnaround.  I live in a metro area, which probably makes a difference.  Your doc probably doesn't know the lab's procedures, so it might be worthwhile for you to talk to them so that you know the process they use and can ask why it takes so long for the results to get back to your doctor.

 

It doesn't sound like your onc is following NCCN protocol.  PCR testing should be done every 3 months.  Have you questioned him about that?  I'm surprised that your insurance is covering monthly testing. 

 

Marnie

Marnie, I don't know why he is testing PCR each month. I hope that you are enjoying your retirement and your new home!

The members of this forum are wonderful, I truly have appreciated their opinions and suggestions.

acl

[acl]

Mayo Lab fee for bcr/abl is approx. $500. FISH is approx. $1000.

Sneezy 12, Thank you!

[acl]

Trey, Scuba, Lucas & Everyone, DX March 2014

BCR/ABL Q PCR

 

Dec.2014 0.72% IS

Feb. 2015 0.67%  IS.

April 2015 0.42%

May 2015 0.45%

Jun 2015 0.35%

July 3, 2015 0.24%

Aug 17/15    0.22%

Good News!  Received results from my hematologist's nurse today. My BCR/ABL test result from June 5/15 is 0.35% IS. and that I don't have to increase my dosage of Gleevec, that I don't have to do anything! I asked her if she could let me know what the  result of the BCR/ABL is from July 2015. She said, yes, I will. Hopefully, I will have that result by the end of next week.  I have to take my 300 mg. Gleevec only! My next blood work and appointment with the Dr. will be August 17th. If I continue to take 400 mg. it will show changes on my next blood test. I felt much better when I took the 400 mg. I really appreciate your opinion! Thank you all very much.

Trey, Scuba and Everyone, Received results from my Hematologist's nurse today My BCR/ABL test result from July 3, 2015 is 0.24% IS. I take 300mg Gleevec daily. Thank you.

acl

[Trey]

Did you mean you have an August PCR result?  Otherwise the nurse just re-read to you last month's result.

[acl]

Did you mean you have an August PCR result?  Otherwise the nurse just re-read to you last month's result.

Trey, It takes 40 days to receive a PCR result, it is July's result that I received today. I did edit the post above. Thanks.

acl