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I feel like we just can't get a good break :-(

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#1 bsbk13


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Posted 18 February 2011 - 01:25 PM

My wonderful significant other of 35 years was diagnosed 18 months ago with CML and did pretty-to-very well for 9 months on Gleevec before it stopped working.  He was briefly on Sprycel and even more briefly on Tasigna.  He's had WBC counts from 175,000 to 2,000 and back again, veering wildly.  He's 70 years old, so I suppose he's not as resiliant as you younger patients.

This week we went to Moffitt Cancer Center in Tampa for another visit and he is in line to go into the ponatinib study as he has the T315I mutation.

Had a long meeting with the program coordinator and the physician, both explaining that pancreas problems were the most likely side effect to occur.  Bill's never had pancreatic problems, so no big deal.  He hops up onto the table (as well as a CML patient can hop :-)) and the doc palpates his abdomen and Bill says ouch! on the area over his pancreas.

I really have been trying so hard to keep it together and stay positive, but as the options dwindle, hearing that ouch just about made me lose it.  We haven't gotten results on any pancreatic testing (e.g., lipase or amylase), but I don't know what we'll do if he can't get into this study.  The dr. said he didn't think it was his pancreas, but of course now I've gone from elation at getting so close to the new drug to despair.  All in the same doctor's visit.

I don't know exactly why I'm writing this, other than I need to talk about it and as you all know, not everybody wants to hear it.

Thanks for letting me vent.


#2 BethG


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Posted 18 February 2011 - 02:12 PM

Hi Beth,

Sorry to hear about your partner's struggle! I know all to well how tough it is. However, I do want to chime in. I am one of the early-ish patients in the Phase I ponatinib trial and I have the T315i mutation (started at the 30mg dose in June 2009). While I have definitely had some challenges and side effects, my last bone marrow biopsy showed absolutely normal marrow and my PCR was "faintly positive" (meaning we can't really see anything, but we know it is there somewhere, lol).

If you want/need to chat more about the drug, please send me a private message and I would be happy to give you my e-mail.

Hang in there!


#3 helenet


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Posted 18 February 2011 - 02:16 PM

Hi Beth,

We are here to listen to folks, and you definately need an ear right now.  I will keep you and your mate in my prayers!

#4 CallMeLucky


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Posted 18 February 2011 - 04:09 PM

Sorry you are having tough time Beth and I hope things get better soon.  You stated that his WBC went "from 175,000 to 2,000 and back again".  Are you saying his WBC is high now?  If it is, is it possible his spleen is enlarged, which is a common symptom of CML when the WBC gets high.  That could explain the tenderness in the abdomen.  I'm sure the idea of the spleen being enlarged is not much comfort, but it is a more common symptom of CML and probably wouldn't preclude him from the ponatinib trial.  Anyway, if the doctor said he didn't think it was his pancreas then try not to let your mind wander too much until you have all the facts.  Try to hang in there, I hope things resolve quickly and he can get on the new drug.

Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%


#5 bsbk13


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Posted 18 February 2011 - 06:06 PM

Other Beth, thanks so much.....I DID read about you as a pioneer on the T315I trials!  I hope you really are OK with me contacting you off the list.

Lucky, the day he was palpated, his WBC count was 38,000 and his spleen was nowhere to be felt.  I'm kind of hoping that this is not actually internal at all, but maybe a pulled or even torn muscle.  I don't know if anyone here has heard of this or experienced anything like it, but twice now Bill has has acute episodes of severe back pain.  They seem to occur when his WBC count goes very high?....and oddly, go away about as quickly as they start up.  I'm talking about screaming, sharp pain in his sacrum and especially around a site where he had a BMB in November that was particularly rough (normally he would rather just have a local and get it done, believe it or not).   He was in the hospital for a week (Tuesday the prev week to this past Tues) on a morphine pump and it barely touches it, then one day he wakes up and it's pretty much gone.  During the time he is experiencing it, though, getting upright in bed requires someone (usually me) standing firm and letting him pull himself up, but I can imagine that it's a LOT of pressure/tension on his abdominal muscles.  He's actually been hospitalized twice in the past 2 months for it, not for his CML.

I really need to work on that "letting my mind wander" thing, too, Lucky.  I guess we all experience that.....and you're right...why make it a problem if it's not a problem at this point?  If it is, we'll deal with it, but maybe it'll never be a problem.  Now we've just got to do our best to control his WBC count with hydroxyurea until we can get there on Wednesday and get the workup done.

I just hung up the phone....it rang while I was here typing.....Moffitt Cancer Center (Tampa) calling to tell us that everything's fine and setting up our day on Wednesday for the preliminaries.  The program coordinator is going to meet us at 6:00 AM to get our day started as she knows we need to get back home later that same day.  Wish we didn't, but one of us has to work and my boss is out of town.  We could've waited and gone a week later, but we're so anxious to get the ponatinib.

And thank you, Helene.....we aren't very religious, but accept prayers and good thoughts of all kinds.  We internalize them all and store them up for the bad days.

I was going to say "you don't know what it means to have people to talk to about this".....but sure you do.  You know what it means....it means the difference between freaking out and keeping some level of stability for another day and another day and another day......

Sending hugs to you all in thanks for helping a stranger on this road.


#6 bsbk13


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Posted 12 March 2011 - 08:39 AM


After several speed bumps, we have been accepted into the ponatinib trial at Moffitt.

Very dark days for several weeks as Bill is dealing with a persistent, miserable mouth sore and now hemorrhoids.  He's like Job.

But having gotten the word that we're good to go into this trial, his spirits are raised again and he's eating, driving, and generally interacting more like a guy who expects to live than a guy who expects to die.

We understand that this may not work for him, but what we wouldn't accept was that there was a drug for what he has and he wouldn't get a chance to even TRY it.  Now we feel ready to take what comes.

Beth G....are you OK?  I never heard from you....

Beth S

#7 hannibellemo


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Posted 12 March 2011 - 08:51 AM

Beth S,

Once on this board no one is a stranger, we're BIFs (Best Imaginary Friends - see link)  http://community.lls...age/80126#80126

Glad to hear things are looking up for your husband, good luck to you both!




"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>

#8 Marnie


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Posted 12 March 2011 - 10:14 AM

Congrats, Beth. . .and best of luck to your hubby!!  Keep us posted.


#9 Tedsey


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Posted 13 March 2011 - 12:37 PM

Beth G,

I am soooooo happy to hear you are doing well!  I have been thinking about you!  Yea!  Hurrah!  Long life to you!


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