52 replies to this topic

[acl]

Hi Trey and Everyone, My April 2, 2015 PCR test came back.  BCR-ABL is 0.42%. Feb. 02, 2015 PCR result was 0.67%.  I take 300 mg. Gleevec daily. I was diagnosed with CML March 06, 2014. I hope that some day I will reach undetectable.  Is this good? Thank you.

[pammartin]

When we are talking PCR results, anything that goes down it great. 

[Trey]

For dosage of only 300mg Gleevec that is good.  Your two PCRs last year were essentially flat, and now we see a drop, so that is good news.

 

In a previous post you were considering alternating dosage 400/300 every other day.  That could still be an option if your blood counts are adequate.  But since your PCR is going in the right direction on low dosage it does not seem to be required. 

http://community.lls...cr/#entry169579

[acl]

Hi Trey And Everyone,

Trey thank you very much for the reply, your opinion was very much appreciated! My hematologist's nurse phoned me with the PCR result, and she said that the Dr. is happy with the results. I always feel better when I have your opinion. Dec. and February PCR was flat, so when the Dr. phoned me at home with the results, I asked him, should I take 400 mg. every other day? He said no, lets wait and see! He doesn't know what I did.  Feb. 19th, March 2nd, March 6th, March 9th I took 400 mg. Gleevec, all other days I took 300 mg. Gleevec. March 10th I decided to go back to the 300mg daily. Again I am going to take 400 mg. two days per week, all other days I will take 300mg.I have about 60  of the 400 mg. tablets, I can do this and the Dr. doesn't know. My next PCR test will be done May 2nd. I am hoping that by August 2015 I should reach undetectable. Again thank you!

 

Pam thank you for your words of wisdom! I wish Trey was my Doctor!

[Trey]

It seems you may be very responsive to that small additional dosage.  Are your blood counts adequate to take additional dosage?

[acl]

Hi Trey, my blood counts are: Leukocyte count 3.9L Ref. Range 4.0-11.0 ERYTHOCYTE 3.67L Ref. Range 3.80-5.20, all others are excellent. I don't want to mess up my liver, but at least once a week I am going to take 400 mg. I feel so much better, sometimes I have a day that I feel tired, but the side effects are very few, and I don't feel tired like I did at the beginning.  Thank you very much for your opinion. 

[Trey]

Your blood counts are very good.  I assume you are getting Liver Function Tests done occasionally and are OK?

[scuba]

Hi Trey and Everyone, My April 2, 2015 PCR test came back.  BCR-ABL is 0.42%. Feb. 02, 2014 PCR result was 0.67%.  I take 300 mg. Gleevec daily. I was diagnosed with CML March 06, 2014. I hope that some day I will reach undetectable.  Is this good? Thank you.

 

Trey : Curious why you think this result is satisfactory? Over one year and ACG has not achieved MMR. I would think either an increase in the dose or a drug switch would be appropriate. ACG should be at 0.1% by now and hopefully even lower - by an order of magnitude.

[Trey]

I try to look at each case individually.  Often this requires looking back at previous posts.  She has had a tough time staying on full dosage, so is on reduced dose Gleevec.  She also prefers to stay on Gleevec.  When this information is considered, the roughly 2 1/2 log reduction in one year is quite good, and she will likely reach MMR this year.  Those who struggle with side effects must often make choices such as reduced dosage or drug change, and this is an individual issue.  Lowest dosage which makes "good progress" and also provides good quality of life is fine, and that is what she has seen recently. 

[scuba]

I try to look at each case individually.  Often this requires looking back at previous posts.  She has had a tough time staying on full dosage, so is on reduced dose Gleevec.  She also prefers to stay on Gleevec.  When this information is considered, the roughly 2 1/2 log reduction in one year is quite good, and she will likely reach MMR this year.  Those who struggle with side effects must often make choices such as reduced dosage or drug change, and this is an individual issue.  Lowest dosage which makes "good progress" and also provides good quality of life is fine, and that is what she has seen recently. 

 

My point is that she has plateau'd at the same level year over year ... from Feb 2014 until now, no change. And not in MMR. 0.6 to 0.4 in one year is not significant - it's within the error range.

 

Since ACG invited comments on "is this good", my response is to switch off Gleevec so ACG can hit CML harder and 'punch' through to MMR. Low dose Gleevec, in ACG's case is too low and has not changed anything in one year.  Another TKI will likely be better tolerated and more effective. This is just my opinion. I'd abandon Gleevec. It's done its job and has plateau'd.

[acl]

Hi Trey, Yes my liver function tests are performed monthly, they are normal. Tonight I took 400 mg. Gleevec with my dinner, at least once a week, I will take 400 mg. I am anxious to reach undetectable, this is my own decision, the hematologist does not know and will never know. Again thank you very much!

 

Scuba, I really appreciate your opinion, you are all great! I am sorry, I typed Feb. 2014 PCR result was 0.67%. That's my mistake, it should read Feb. 2, 2015. I was diagnosed with CML March 06, 2014, and I took 400 mg. Gleevec  for a couple of months, but my liver enzymes were a little high and the hematologist prescribed 400 mg. Gleevec Monday, Wednesday and Friday, and all other days I took 300 mg. I was having a lot of side effects and the Doctor said that not ONE SIZE fits all, and prescribed 300 mg. daily  PCR performed Dec. 2, 2014 was 0.72% and PCR performed Feb. 02, 2015 was 0.67. I asked the hematologist if I could increased Gleevec to 400 mg. two times a week, he said, no, wait and see. April 2, 2015 PCR was 0.42% I am happy with the result. On my own I took 400 mg. Gleevec Feb. 19th March 2, 6, 9, 2015 the other days I took 300 mg., March 10th I went back to 300 mg. daily, but today I took 400 mg. and I will continue to take 400 mg. once a week. The Doctor doesn't know, he thinks that I am only taking 300 mg. daily. This is my own decision, if my liver function tests show a change, I will stop the 400 mg. Again thank very much. ACG

[scuba]

Hi Trey, Yes my liver function tests are performed monthly, they are normal. Tonight I took 400 mg. Gleevec with my dinner, at least once a week, I will take 400 mg. I am anxious to reach undetectable, this is my own decision, the hematologist does not know and will never know. Again thank you very much!

 

Scuba, I really appreciate your opinion, you are all great! I am sorry, I typed Feb. 2014 PCR result was 0.67%. That's my mistake, it should read Feb. 2, 2015. I was diagnosed with CML March 06, 2014, and I took 400 mg. Gleevec  for a couple of months, but my liver enzymes were a little high and the hematologist prescribed 400 mg. Gleevec Monday, Wednesday and Friday, and all other days I took 300 mg. I was having a lot of side effects and the Doctor said that not ONE SIZE fits all, and prescribed 300 mg. daily  PCR performed Dec. 2, 2014 was 0.72% and PCR performed Feb. 02, 2015 was 0.67. I asked the hematologist if I could increased Gleevec to 400 mg. two times a week, he said, no, wait and see. On my own I took 400 mg. Gleevec Feb. 19th March 2, 6, 9, 2015 the other days I took 300 mg., March 10th I went back to 300 mg. daily, but today I took 400 mg. and I will continue to take 400 mg. once a week. The Doctor doesn't know, he thinks that I am only taking 300 mg. daily. This is my own decision, if my liver function tests show a change, I will stop the 400 mg. Again thank very much. ACG

 

You wrote "hematologist". How many CML patients does your hematologist treat?

[acl]

Hi Scuba, I don't know how many CML patients my Hematologist has treated, last year he told me that his speciality is Leukemia and Lymphoma. I live in a city that has a population of only 350,000, and we have four hematologists/oncologists that work at the same clinic.

He told me that not everybody reaches UNDETECTABLE. Thank you very much for your opinion, it was appreciated. ACG.

[acl]

Hi Scuba, I don't know how many CML patients my Hematologist has treated, last year he told me that his speciality is Leukemia and Lymphoma. I live in a city that has a population of only 350,000, and we have four hematologists/oncologists that work at the same clinic.

He told me that not everybody reaches UNDETECTABLE. Thank you very much for your opinion, it was appreciated. ACG.

Hi Trey, Scuba and Everyone,

Bad news, Feb. 2/15 PCR test result was 0.67%, April 2/15 0.42% and May 4/15 0.45%, I am feeling sad! The Hematologist/Oncologist saw me yesterday July 3rd, and ordered another QPCR test, The blood test was performed May 4th, but I only find out the results on July 3rd, I am not happy about that! He will have the results in 10 days, after I said that 30 days is a long time to wait for the result, he said that he will request it as urgent on the computer! He said that we could increase the Imatinib dosage or we could change meds., but wants to wait and see what this latest QPCR test result is. I take 300 mg. Imatinib daily, but today I took 400 mg.and I am going to do this 2 times per week, until he tells me what to do. I hate when I have to do this! I am ready for a med change .All my other blood test results are excellent, except red cell turnover is a little high. If I change meds what is the starting dosage for Sprycel?  I value your opinion. Thank you!!

[Lucas]

hey, acg, that's not so bad news. you're on a plateau and not losing response. i think a full dose of gleevec will do the job. good luck! p.s. The starting dose for sprycel is 100mg, but many people do well on a lower dose, like scuba, who was pcru with only 20mg

[acl]

hey, acg, that's not so bad news. you're on a plateau and not losing response. i think a full dose of gleevec will do the job. good luck! p.s. The starting dose for sprycel is 100mg, but many people do well on a lower dose, like scuba, who was pcru with only 20mg

Lucas, I have so much to learn! Thank you thank you thank you!!

[Trey]

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.

[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.

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.

[Lucas]

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

[rcase13]

Yep no worries about grammer. I'm from the south.