106 replies to this topic

[TeddyB]

                          International Scale:

          BCR-ABL1/ABL1        BCR-ABL/GUS

04.11.12     76%                         21%

06.14.12     17%                         10%

07.26.12     3%                           3%

10.24.12     0.10%                      0.08%

01.15.13     0.02%                      0.01%

04.11.13     0.03%                      0.01%

07.16.13     0.04%                      0.03%

09.12.13     0.01%                      0,02%

12.04.13     0.01%                      0,01%

03.05.14     0.01%                      0.02%

06.11.14     0.03%                      0.02%

09.12.14     0.01%                      0.02%

 

Happy as can be

 

I was dealing with an infection on my test 06.11.14, and my wbc was 7, while ive usualy been steady with a wbc of 5 for the last 0,01 tests, interestingly enough wbc was 5 again now on my last test. Coincidence? Or did the higher wbc impact my pcr?

 

Anyway, have a nice day folks, hope you all are well.

 

Trey: Didnt have a chance to increase dosage before my pcr test because side effects have been a bit worse lately.

[Trey]

You should go negative soon.  But a boost in dosage could help jump start that. 

 

The increased WBC would not affect PCR results in your case. 

[TeddyB]

Thanks Trey

 

About the wbc, that was what i thought, but it was worth a mention.

 

Going negative sounds fun, i really want to get there some day.

Fatigue and tinnitus are taking its toll on me lately, not much time to exercise, im busy at work, my wife is busy at work, and after the kids are in bed at around 20:00-21:00 i just flat out on the couch a few hours before going to bed.

BUT, i will keep the increased dosage in mind before my next pcr test in december. Hopefully things will have calmed down at work by then

[LivingWellWithCML]

You're doing great Teddy!

 

We have a similar side effect journey.  I also continue to deal with tinnitus in my left ear and have learned to live with it -- although I'm still not convinced that it's a Gleevec side effect.  I'm nursing a multi-month knee injury that's been keeping me off the bike quite a bit lately (plus work travel and other commitments), so I'm now starting to feel the Gleevec fatigue since I'm out of my regular exercise routine.  It seems to hit me in the evenings, although I take Gleevec early in the morning and don't feel the fatigue much (if any) during the day.  I see why this is a journey and not a destination.  We have to stay the course and live life the best that we can.

 

So happy to see your great results ...

[TeddyB]

Thank you Dan!

 

I hope you get on your bike again soon.

 

Same here with the fatigue, it hits me hardest in the evenings after work. (I also take my G with breakfast)

The tinnitus also is worst in the evenings, but comes and goes. Its worse during stressful periods.

 

Anyway, small glass of red to celebrate tonight, have a great evening

[Trey]

The tinnitus went away for me after a couple years.  It hung on for quite a while. 

[TeddyB]

Thanks for sharing that Trey, gives me hope that i one day maybe can be tinnitus-free.......

[hannibellemo]

Congratulations!

[TeddyB]

Thank you Pat

[TeddyB]

Got my latest test results in the mail today:

 

                     International Scale:

          BCR-ABL1/ABL1        BCR-ABL/GUS

04.11.12     76%                         21%

06.14.12     17%                         10%

07.26.12     3%                           3%

10.24.12     0.10%                      0.08%

01.15.13     0.02%                      0.01%

04.11.13     0.03%                      0.01%

07.16.13     0.04%                      0.03%

09.12.13     0.01%                      0,02%

12.04.13     0.01%                      0,01%

03.05.14     0.01%                      0.02%

06.11.14     0.03%                      0.02%

09.12.14     0.01%                      0.02%

12.11.14     X.XX%                      0.03%

 

They didnt tell me my ABL1 %, only GUS, but im guessing its almost the same as last time as my GUS is pretty stable from 0.02% to 0.03%.

 

I will ask for ABL1 at my next apt.

If the Gleevec wasnt kicking my ass, i would go for increased dosage (500mg pr day) as Trey suggested, but right now thats not an option. Some CML stemcell exhaution would fit me fine right about now, but i guess thats many years down the road

 

Hope you all are feeling well

[Gerry - CML]

Hi Teddy,

What is the difference between the ABL1 and GUS?

[Billie Murawski]

Got my latest test results in the mail today:

 

                     International Scale:

          BCR-ABL1/ABL1        BCR-ABL/GUS

04.11.12     76%                         21%

06.14.12     17%                         10%

07.26.12     3%                           3%

10.24.12     0.10%                      0.08%

01.15.13     0.02%                      0.01%

04.11.13     0.03%                      0.01%

07.16.13     0.04%                      0.03%

09.12.13     0.01%                      0,02%

12.04.13     0.01%                      0,01%

03.05.14     0.01%                      0.02%

06.11.14     0.03%                      0.02%

09.12.14     0.01%                      0.02%

12.11.14     X.XX%                      0.03%

 

They didnt tell me my ABL1 %, only GUS, but im guessing its almost the same as last time as my GUS is pretty stable from 0.02% to 0.03%.

 

I will ask for ABL1 at my next apt.

If the Gleevec wasnt kicking my ass, i would go for increased dosage (500mg pr day) as Trey suggested, but right now thats not an option. Some CML stemcell exhaution would fit me fine right about now, but i guess thats many years down the road

 

Hope you all are feeling well

 

Got my latest test results in the mail today:

 

                     International Scale:

          BCR-ABL1/ABL1        BCR-ABL/GUS

04.11.12     76%                         21%

06.14.12     17%                         10%

07.26.12     3%                           3%

10.24.12     0.10%                      0.08%

01.15.13     0.02%                      0.01%

04.11.13     0.03%                      0.01%

07.16.13     0.04%                      0.03%

09.12.13     0.01%                      0,02%

12.04.13     0.01%                      0,01%

03.05.14     0.01%                      0.02%

06.11.14     0.03%                      0.02%

09.12.14     0.01%                      0.02%

12.11.14     X.XX%                      0.03%

 

They didnt tell me my ABL1 %, only GUS, but im guessing its almost the same as last time as my GUS is pretty stable from 0.02% to 0.03%.

 

I will ask for ABL1 at my next apt.

If the Gleevec wasnt kicking my ass, i would go for increased dosage (500mg pr day) as Trey suggested, but right now thats not an option. Some CML stemcell exhaution would fit me fine right about now, but i guess thats many years down the road

 

Hope you all are feeling well

 

Got my latest test results in the mail today:

 

                     International Scale:

          BCR-ABL1/ABL1        BCR-ABL/GUS

04.11.12     76%                         21%

06.14.12     17%                         10%

07.26.12     3%                           3%

10.24.12     0.10%                      0.08%

01.15.13     0.02%                      0.01%

04.11.13     0.03%                      0.01%

07.16.13     0.04%                      0.03%

09.12.13     0.01%                      0,02%

12.04.13     0.01%                      0,01%

03.05.14     0.01%                      0.02%

06.11.14     0.03%                      0.02%

09.12.14     0.01%                      0.02%

12.11.14     X.XX%                      0.03%

 

They didnt tell me my ABL1 %, only GUS, but im guessing its almost the same as last time as my GUS is pretty stable from 0.02% to 0.03%.

 

I will ask for ABL1 at my next apt.

If the Gleevec wasnt kicking my ass, i would go for increased dosage (500mg pr day) as Trey suggested, but right now thats not an option. Some CML stemcell exhaution would fit me fine right about now, but i guess thats many years down the road

 

Hope you all are feeling well

Teddy you lost me after you said you got your results, if that is a good report congratulations, if it is not what you expected, just be patient, you'll be seeing all 00000's soon. Billie

[TeddyB]

Teddy you lost me after you said you got your results, if that is a good report congratulations, if it is not what you expected, just be patient, you'll be seeing all 00000's soon. Billie

 

The results are good, if not great

I would of course love to see pcru at some point, but patience is key

Thanks Billie, hope you are doing well!

 

Hi Teddy,

What is the difference between the ABL1 and GUS?

 

Different control genes.

The most common used is ABL1 if i am not mistaken.

[TeddyB]

Here we go, 3 years since DX, and this is how it looks like:

 

                     International Scale:

          BCR-ABL1/ABL1        BCR-ABL/GUS

04.11.12     76%                         21%

06.14.12     17%                         10%

07.26.12     3%                           3%

10.24.12     0.10%                      0.08%

01.15.13     0.014%                      0.01%

04.11.13     0.014%                      0.01%

07.16.13     0.032%                      0.03%

09.12.13     0.021%                      0,02%

12.04.13     0.013%                      0,01%

03.05.14     0.017%                0.02%

06.11.14     0.025%                0.02%

09.12.14     0.018%                0.02%

12.11.14     0.031%                0.03%

03.23.15     0,014%                X.XX%

 

Somehow on this report, the history has changed a bit (Maybe different IS factor?), but i now have another decimal on my ABL1 results. Looks like i am staying between 0,01 and 0,03.

Happy with the results, hoping i still can have a drop to PCRU some day, but today i am happy

 

Hope you all are doing welll!

[gerry]

Hi Teddy,

PCRU is just over the horizon waiting to surprise you.

[Trey]

Very asymptotic. 

[Billie Murawski]

Great news Teddy, I hope you're feeling better.                                      Billie

[Gail's]

Since this is a good news topic, thought I'd share that today I had the most energy of any day for the last 3 months (since my diagnosis). Yesterday I got a massage and a new to me person did it. She studied in China and worked on pressure points to balance me. Could be coincidence, but such a lovely experience to feel a bit of peppy old me coming back! I am going to contact the Chinese medicine college here in Portland to see if I can get more work done to supplement the wonder drug.

[TeddyB]

Hi Teddy,

PCRU is just over the horizon waiting to surprise you.

 

Thanks!

So i hope

 

 

Very asymptotic. 

 

Yes indeed. Close but no cigar. Since wine is better than cigars anyway, i will have a glass of wine to celebrate

 

Great news Teddy, I hope you're feeling better.                                      Billie

 

Thanks Billie!

 

Since this is a good news topic, thought I'd share that today I had the most energy of any day for the last 3 months (since my diagnosis). Yesterday I got a massage and a new to me person did it. She studied in China and worked on pressure points to balance me. Could be coincidence, but such a lovely experience to feel a bit of peppy old me coming back! I am going to contact the Chinese medicine college here in Portland to see if I can get more work done to supplement the wonder drug.

 

Glad to hear! Not exactly the same, but i go to fysical therapy a few times pr month as well.

[Billie Murawski]

Good for you Gail, I've wanted to try a massage but I keep forgetting to call about one. So glad your doing something for yourself to make you feel better.                            Billie