22 replies to this topic

[ChrisC]

Went to see my onc yesterday and received my test results: CBC all normal, PCR is negative (0.000 IS).

Onc suggested now doing yearly testing. I reminded him that the Stanford specialist he sent me to, who approved my doing a one-person trial of going off Sprycel after reaching PCRU 11 months post dx, then maintaining PCRU without fluctuation for two years, had said to continue PCR testing twice a year for the rest of my life. So, I'll see my onc again in April.

Maybe someday I'll be comfortable enough to be tested once per year, but for now it appeases my concerns when I seem to be bruising easily or there are other CML-resembling symptoms: I say to myself, well, if it's that again, it'll show up in the next test.

As for the ongoing fatigue, hearing loss, etc., I just continue to try to live life as the gift it is, and am enjoying — cheers!

That's my report. My best wishes to every fellow member of this board: may you experience ever-increasing health and well being. Thank you for being part of my CML and post-CML journey.

ChrisC

dx Oct. 2008

459k WBC

7 mos. on/off Gleevec

started Sprycel 100 mg, then in 4 mos. was PCRU

[hannibellemo]

Congratulations, Chris. I'm so happy for you and I can't believe it's been 2 years! Here's to many more TKI free years!

Pat

[threedprof]

What a blessing! I'm very happy to hear your results are so good, Chris! I haven't experience the bruising such as you have but I still notice the mental forgetfulness and fatigue. Hope you have many more negative PCRU results!

[Skittles]

So AWESOME Chris!!!!  Kudos to you and hope for the rest of us.  I am with you, twice a year!!  Once a year would scare me too but perhaps with time I could adapt to that and not panic but I doubt it.  Thank you so much for sharing with all of us.  May you have a great life without TKI's !!

Skittles

[TeddyB]

Great news Chris, congratulations

[Skittles]

Chris, do you know what your sokal score was at dx?  Thanks and keep up the great work!! 

[ChrisC]

HI Skittles,

No, there wasn't ever a focus on Sokal score for me. I will say that my spleen was HUGE, pressing into my stomach and lungs. I imagine it would have been a damning score . . . who needs that?

Yesterday, my onc was reminiscing about first seeing me in the emergency room, when he was called down from his clinic. It was the highest WBC he'd ever seen, and he felt that the situation was life threatening.

He immediately performed a BMB and BMA, and put a catheter into my neck vein so that for the next week I could be hooked up a couple of hours a day to the leukapheresis machine to spin off some of the excess WBC. This started that evening, while in ICU for a couple of days, and it continued daily for a week while solo in a double room. Went from 459k down to 121k in a week, then was started on Gleevec 400 mg when the CML dx was confirmed.

The funny thing is that after doing more and more poorly for over a year, and having lost over 30 pounds within the previous two months, I was noticeably feeling better for the first time in ages, and that is when I finally asked a friend to take me to a clinic for a checkup (I thought it all was just a return of mono that I'd had back in the '60s). I still feel that I'd turned a corner, and perhaps in reality my own internal defense was kicking into proper gear . . . no proof, though, just a gut feeling. However, this may be a factor in the good outcome

It's all a mystery to me. Extreme responses at both start and finish!

ChrisC

[threedprof]

Chris it's funny you say that you felt your internal defenses were taking over. About two years prior to me expressing interest in coming off of the drug therapy I too felt the same sense, internally.

[Skittles]

Chris, your story is so encouraging and I couldn't be happier for you.  You truly have come so far in your cml journey, as has Joel.  The fact that you both have been so open with all of us in the details of your journey gives the rest of us hope that one day many more will be able  to be TKI free.  Perhaps the fatigue will let up, perhaps not, but you are doing wonderfully and that's the bottom line.  You have a great outlook on the whole situation and you both are a  great inspiration to others.  Thanks again for sharing! Skittles

[SUE]

Congratulations, Chris.  Thank you so much for taking the time to share your experiences  Your courage and strength provide a  light in this strange tunnel of cml, especially for those who have recently found ourselves. here.

Sue

[alexamay09]

Just wanted to say many congratulations xx

[hannibellemo]

Hi, Skittles,

Your question reminded me that Trey talked about the Sokal scoring system in a previous post. Thought this might interest you if you haven't seen it.

Pat

http://community.lls...e/108350#108350

[Skittles]

Thanks Pat.  Leave it to Trey to leave us with a vision like that!  He is so bright and helpful and yet he manages to keep us laughing too! I guess I question the sokal score and cessation in part because though I had a very low PCR & blast count at dx and responded quickly I have been told by Dr. Druker that due to my high platelets (1.5 million) I have a high sokal score and most of the cessation studies are showing low sokal as a positive issue in regards to staying of TKI's.  I so hope this changes with more trials and studies going on.  Wishful thinking on my part.  Thanks again Pat.  Have a great day, Skittles

[hannibellemo]

Skittles, I just had a good laugh on myself. I went back to re-read the whole thread and realized that of course you'd seen it - you started the thread two years ago!

Pat

[Skittles]

Too funny!  Just know that it's always a good thing to help someone else out...and you helped me since I had forgotten that thread or am just hoping the sokal score truly doesn't matter...  Take care Pat!

[Trey]

TKI cessation studies have not been very scientific so far and also have so little data accumulated with too many variables to be of much value in forming predictions.  I don't think we know nearly enough about the subject to make any firm judgements.  Even fast initial response to the TKI drug is highly variable based on the drug used.  Slow initial responders on Gleevec may have been fast responders on Tasigna or Sprycel or another drug available now.  High platelets at diagnosis is often dependent on many factors.  My platelets were at 1 million an entire year before any other signs of CML appeared, and probably varied wildly over the next year (but no other blood tests to know what happened).  So far what we know about predicting cessation success is that it is a  trial and error approach to see if it works, much the same as finding the best TKI drug is a trial and error approach. 

Much like the sharting monkey with the dart board.....I think his name was Sokal E. Hasford as I recall.....Also one of PhilB's furry friends.....

[Skittles]

I know you are right Trey but I would love to be able to hope for TKI free days someday. I also think about lower dose Gleevec but am afraid to do either.  Don't get me wrong...I am very thankful for Gleevec and the response it has given me but I do feel different on it as compared to pre-treatment days and hope we might all be able to come off safely one day .  As always, we can depend on you to help sort out things for us and I thank you.    Now as regarding Sokal E. Hasford.......to much info....ha!  I always got a kick out of you and Phil going back and forth...you two are something else!!!   Have a great day Trey and thanks again.  Skittles

[ChrisC]

Hi Trey,

For some reason my platelets were in normal range at dx, though the WBC was extremely high.

Would that be relevant to being successfully off TKI, do you think?

Thanks.

ChrisC

[Trey]

In CML some have high platelets and others do not.  It is an odd variation that is likely a matter of the level of original stem cell translocation, but no way to know for sure.  Either way it would probably be irrelevant for TKI cessation. 

[hannibellemo]

Just curious, Trey. What exactly was it that the sharting monkey threw at the dart board? Or, is that a silly question?

Pat