26 replies to this topic

[acl]

Hi Trey and Everyone,

The Hematologist's office nurse phoned me today with the PCR BCR-ABL percentage result  from July 12, 2016, 52 days later. I  am a little sad it was 0.7% and July 12th result is 0.17%. I just told her that's too bad!

This time it took 52 days for the Doctor to receive the results!

 

Mr. Tee we live in the same country, just a different Province, how long do you have to wait for your PCR results?  I hope that you are getting stronger each day.

 

acl

[MarCap73]

acl,

 

I live in the Boston area where there are many very large hospitals and cancer centers.  I get my results in about 7 - 10 days, which I think is pretty typical in the US.  Elsewhere, I don't know.

 

Cheers.

 

EDIT: I should note that I get my CBC results near instantaneously.  Labs are scheduled 75 minutes before the appointment with the Onc.  The Onc will have the CBC and metabolic results when we meet.  It's the PCR that takes 7 - 10 days.  

Edited by MarCap73, 03 September 2016 - 08:10 PM.

[tiredblood]

Does the lab have a website with a patient portal where you could access your results? Keep in mind, I'm not familiar with anywhere but the US.

[hannibellemo]

I am surprised that it takes so long to get your results, but that may be the difference in having it done in-house vs. sending it to a large laboratory. I know that Mayo does testing for other hospitals but I don't think it is a huge laboratory, I may be wrong.

 

When I go to Mayo for testing my results are often times reported to me that same day, when my local hospital delivers the sample to them I generally get it within 2 days. It isn't the lab work that takes so long, testing is obviously done very quickly, so it must be the physician that reads and verifies it before sending the report on to your docs that takes the time.

 

What are results reporting times like in other parts of the world?

[mdszj]

I live in PA, USA and go to Quest Diagnosticcs lab.  There you can fill out a form to get copies of all your test results direct from the lab and do not have to rely on the doctor to give them to you.  CBC and metabolic panel results take a few days and PCR usually takes up to about a week or so. But it is worth it to have your own results w/o having to bug the doctor.

[Buzzm1]

acl, when do you test again?  Hopefully the 0.17 July 12th reading is just an anomaly; what were your readings prior to the May 12th 0.07? 

[acl]

acl, when do you test again?  Hopefully the 0.17 July 12th reading is just an anomaly; what were your readings prior to the May 12th 0.07? 

Thank you all for your comments. The CBC and metabolic panel results takes an hour. The PCR test is not done at the hospital it is sent to Hamilton, Ontario to another hospital, I live in Canada, and there is no lab patient portal for us to access the results. I will test again Sept. 12th that's when I have the appointment with the hematologist He told me once that he is not concerned until I reach 1%. I hope that he will request my next PCR test as urgent, and that takes approximately 2 weeks for him to receive the results. I will have to phone his nurse on Monday  and tell her that I am concerned and that  I would really appreciate if he requests my next PCR test as urgent. Sometimes I have to tell them what I want or it does not get done, 52 days is a very long time to wait for a PCR result. My BCR-ABL percentage is as follows:

 

Dec. 2014  0.72%

Feb. 2015  0.67%

Apr.  2015  0.42%

May. 2015  0.45%

Jun.  2015  0.35%

Jul.   2015  0.24%

Aug. 2015  0.22%

Sep. 2015  0.18%

Nov. 2015  0.18%

Jan. 2016   0.18%

Feb. 2016  0.11%

Mar. 2016  0.13%

May 2016  0.07%

Jul   2016  0.17%

I am happy that he orders the PCR test every two months, since we have to wait 52 days to receive the results.

 

He will never increase the Gleevec dosage, when necessary he probably will prescribe Sprycell.

 

acl

[Buzzm1]

He will never increase the Gleevec dosage, when necessary he probably will prescribe Sprycell.

 

acl

acl, thanks for posting your readings; if your onc eventually switches you to Sprycel, a 50mg dosage would likely suffice.  With your low PCR BCR-ABL reading it shouldn't be necessary for you to ever be on Sprycel 100mg.

[acl]

acl, thanks for posting your readings; if your onc eventually switches you to Sprycel, a 50mg dosage would likely suffice.  With your low PCR BCR-ABL reading it shouldn't be necessary for you to ever be on Sprycel 100mg.

Buzz. thank so much for your opinion. I hope that I will not discontinue the Gleevec, but it's good to know that 50 mg. of Sprycel would likely suffice, I will remember that.

 

acl

[acl]

Hi,

My results are done at the Tom Baker Cancer Centre and are usually available within a week, I have seen the test done as soon as 2 hours later and the report to follow by a few days.  Normally I get tested 2-3 weeks before my hematologist appointment, but they used to test me at the appointment and I had to wait 3 months till my next appointment to get the results. I don't worry about CML much any more the Prostate Cancer will get me long before the CML

 

Hi Mr. Tee, thank you very much for the reply. I worry about CML, If I reach blast crisis I am finished and it will be a very painful death. If your prostate cancer was not at stage 4 you probably will live to be 101 years old. My brother had prostate cancer 10 years ago and it has not come back he is a Real Estate Sales Rep. and he is fine. 

 

I am really Blessed to have found this CML forum. Take care.

 

acl

[hannibellemo]

acl,

 

My apologies, I didn't intend to hijack your thread. It seemed to me that part of your frustration was the length of time it takes to get your results, which is lengthy!

 

Just to encourage you, I hope. I was on Gleevec for 9 months when I developed severe liver toxicity. My AST and ALT went into the 1300's and 1500's respectively. I was within reach of CCyR at 4%. Very discouraging as I had to stop all medications and allow my liver to recover for about 7 weeks. My PCR was back to 5%. I started 100 mg Sprycel and it was not a pleasant experience for the first 5 months but eventually my body adapted. At 2.5 years on 100 mg. I developed a minor pleural effusion. I didn't stop Sprycel for 2 more weeks and that was a huge mistake. My pleural effusion grew significantly and I needed thoracentisis to remove fluid. I was off Sprycel for about 9 weeks that time. 

 

I lost MMR and was close to losing CCyR when I resumed Sprycel at the 50 mg. level. This was in 2012. Last year I finally reached PCRU (still on 50 mg)and have bounced in and out with the bounces getting smaller each time. I doubt I'll ever be able to stop TKIs and that isn't my goal. My goal is to take as little of the drug as I can and still have it do its job.

 

We turtles do ok, too! Don't forget that, and if you should, just come back here for a little encouragement booster!

[Buzzm1]

I doubt I'll ever be able to stop TKIs and that isn't my goal. My goal is to take as little of the drug as I can and still have it do its job.

 

We turtles do ok, too! Don't forget that, and if you should, just come back here for a little encouragement booster!

Pat, if you aren't there already, I do believe you will reach a point where decreasing your dosage will not adversely effect your PCR readings, rather you will likely continue on with small bounces around PCRU despite a markedly lower dosage.  More experiential knowledge needs to be gained in this area but it sure in the hell beats unnecessarily continuing on a higher dosage of a toxic medication.  More power to you.

[acl]

acl,

 

My apologies, I didn't intend to hijack your thread. It seemed to me that part of your frustration was the length of time it takes to get your results, which is lengthy!

 

Just to encourage you, I hope. I was on Gleevec for 9 months when I developed severe liver toxicity. My AST and ALT went into the 1300's and 1500's respectively. I was within reach of CCyR at 4%. Very discouraging as I had to stop all medications and allow my liver to recover for about 7 weeks. My PCR was back to 5%. I started 100 mg Sprycel and it was not a pleasant experience for the first 5 months but eventually my body adapted. At 2.5 years on 100 mg. I developed a minor pleural effusion. I didn't stop Sprycel for 2 more weeks and that was a huge mistake. My pleural effusion grew significantly and I needed thoracentisis to remove fluid. I was off Sprycel for about 9 weeks that time. 

 

I lost MMR and was close to losing CCyR when I resumed Sprycel at the 50 mg. level. This was in 2012. Last year I finally reached PCRU (still on 50 mg)and have bounced in and out with the bounces getting smaller each time. I doubt I'll ever be able to stop TKIs and that isn't my goal. My goal is to take as little of the drug as I can and still have it do its job.

 

We turtles do ok, too! Don't forget that, and if you should, just come back here for a little encouragement booster!

Pat, thank you for your kind words and encouragement.

 

Thank you all!

 

acl

[hannibellemo]

Pat, if you aren't there already, I do believe you will reach a point where decreasing your dosage will not adversely effect your PCR readings, rather you will likely continue on with small bounces around PCRU despite a markedly lower dosage.  More experiential knowledge needs to be gained in this area but it sure in the hell beats unnecessarily continuing on a higher dosage of a toxic medication.  More power to y

 

Thanks, Buzz,

 

I still continue to have irritating bouts of breathlessness, I'm supposed to leave on vacation today and instead I'm going to call my onc and see about getting in for an X-ray for piece of mind. When I get back, I'm going to talk to him about rotating 25 mg every other day with 50mg. I have a 3 month build up of Sprycel and I don't want to have to change if it isn't necessary.

 

I also have the worry of PAH. I thought that it was considered a rare side effect, but I've since read that at least one study shows it to affect 5% of those on Sprycel; that doesn't seem insignificant to me.

[r06ue1]

Yikes, get mine in a few days, probably due to the lab being on site (Seidman Cancer Center in Cleveland).

[Buzzm1]

Thanks, Buzz,

 

I still continue to have irritating bouts of breathlessness, I'm supposed to leave on vacation today and instead I'm going to call my onc and see about getting in for an X-ray for piece of mind. When I get back, I'm going to talk to him about rotating 25 mg every other day with 50mg. I have a 3 month build up of Sprycel and I don't want to have to change if it isn't necessary.

 

I also have the worry of PAH. I thought that it was considered a rare side effect, but I've since read that at least one study shows it to affect 5% of those on Sprycel; that doesn't seem insignificant to me.

Pat, glad you are putting your health first.  Testing the waters by beginning the 50/25 rotation six weeks, or so, before the next PCR helps to gain confidence/lower the anxiety.  Lowering your dose can only help lessen the side-effects which are more pronounced as we age.

[acl]

Pat, glad you are putting your health first.  Testing the waters by beginning the 50/25 rotation six weeks, or so, before the next PCR helps to gain confidence/lower the anxiety.  Lowering your dose can only help lessen the side-effects which are more pronounced as we age.

 

acl, thanks for posting your readings; if your onc eventually switches you to Sprycel, a 50mg dosage would likely suffice.  With your low PCR BCR-ABL reading it shouldn't be necessary for you to ever be on Sprycel 100mg.

Buzzm1 and Everyone, I had an appointment with the Hematologist/Oncologist today. His nurse saw me first to check my B/P and ask questions about what meds do I take and the side effects. I told her that I have anxiety regarding the PCR test that was ordered today as a Routine test.  She said you have to tell that to the Doctor. I Can not believe that he ordered a PCR BCR/ABL test today as routine after I had a rise in the BCR from 0.7 % to 0.17%. He told me as you know the numbers can go up and down. I told him that 0.17% is still a nice low number, that my anxiety is about the PCR test that he ordered today as ROUTINE and now I have to wait 48 to 52 days for the result. He said I have changed it to URGENT. I said when will you receive the results? He said in about two weeks. He left and the nurse stayed behind, I asked her when should I phone you for the results? She answered in one week next Monday. Sorry as you can see I was not very polite, but he knows me from work. I will keep you informed next week.  Thank you!!!

acl

[Buzzm1]

I had a rise in the BCR from 0.07% to 0.17%.

 

I asked her when should I phone you for the results? She answered in one week next Monday. Sorry as you can see I was not very polite, but he knows me from work. I will keep you informed next week.  Thank you!!!

acl

acl, glad to hear that you will receive your PCR BCR-ABL result much sooner than 52 days ... it pays to be assertive ... we'll be looking forward to your result.

[rcase13]

52 days is crazy, I usually get my blood drawn on a Monday and results by Thursday the same week. I think it's inhumane to wait 4 days. 52?!?! I would probably die from multiple anxiety attacks...

[acl]

52 days is crazy, I usually get my blood drawn on a Monday and results by Thursday the same week. I think it's inhumane to wait 4 days. 52?!?! I would probably die from multiple anxiety attacks...

rcase13,  Consider yourself lucky! I wish I could receive my results in four days.  I am a little concerned if he changes the Gleevec to Sprycel and I take Synthroid thyroid medication, will I need to decrease my dosage of Synthroid? I don't want to have hyperthyroidism. Thanks.

 

acl