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Spleen pain after 7 months on reduced dose

Started by jmoorhou , Jul 27 2017 03:55 PM

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6 replies to this topic

#1 jmoorhou

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LocationOutside of San Francisco

Posted 27 July 2017 - 03:55 PM

This can't be good news.

Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

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#2 rcase13

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LocationCharlotte, NC

Posted 27 July 2017 - 09:07 PM

I am almost three years past diagnosis. If I over exert myself my spleen is nice enough to let me know and then take several days to stop hurting, scar tissue I am told.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg

04/08/2015 0.01% Tasigna 600mg

07/01/2015 0.01% Tasigna 600mg

10/05/2015 0.02% Tasigna 600mg

01/04/2016 0.01% Tasigna 600mg

04/04/2016 PCRU Tasigna 600mg

07/18/2016 PCRU Tasigna 600mg

10/12/2016 PCRU Tasigna 600mg

01/09/2017 PCRU Tasigna 600mg

04/12/2017 PCRU Tasigna 600mg

10/16/2017 PCRU Tasigna 600mg

01/15/2018 PCRU Tasigna 600mg

Cancer Sucks!

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#3 jmoorhou

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Posted 04 August 2017 - 12:34 AM

Interesting...it's hard for me not to believe it's white clone cells gathering there....not good...can a spleen burst? Cancer really does suck.

Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

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#4 hannibellemo

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LocationNorth Central Iowa

Posted 07 August 2017 - 07:53 AM

jmoorhou, if you have been undetectable since 3 months after dx, then I will share with you what my doctor said, "CML is not causing any of your concerns". For all practical purposes if our response is excellent we are not being affected by CML, we may have side effects from our TKI, though.

How are your platelet counts, blood counts in general? What was your platelet count at diagnosis? Mine was 1.25 million, my spleen was huge! I did have some discomfort after, some real - some imagined, I'm sure.

Does your onc check for spleen size at your exams, if not, ask him to next time. More than likely he will tell you he can't feel it. No worries!

Good luck!

Pat

"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>

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#5 jmoorhou

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Posted 07 August 2017 - 04:23 PM

Pat for the last seven months I have been on half dose of Gleevec. As soon as the spleen started hurting again, I've taken full dose and the spleen is ok. I'm quite sure it was those bum white blood cells collecting. WBC went from 7.4 to 9.6...platelets are 360...that's enough for me, it's back to 300 mg. Thanks for your post.

Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

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#6 Trey

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LocationSan Antonio, Texas

Posted 07 August 2017 - 08:16 PM

The spleen is not a good indicator of minimal residual disease status. It is a "lagging indicator".

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#7 chrissy778

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LocationTroy, New York

Posted 07 August 2017 - 08:55 PM

My Dr feels my spleen every visit.. He also said if I was to become resistant it would show in my PCR first then white count then spleen... I think when I am uncomfortable and feel full there it's just my decending colon and my nerves think OMG my spleen..