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Splenic pain?

Started by tiredblood , Mar 17 2016 09:47 PM

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8 replies to this topic

#1 tiredblood

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Posted 17 March 2016 - 09:47 PM

I went off of the TKI (to try to confirm CML diagnosis with BMB) in October and lost my response in January. Went back on the TKI at a lower dose in January. After going back on TKI in January, at some point, my left shoulder blade pain returned. For at least the past couple of weeks, I've had left upper quadrant pain where I think the spleen is located, some left flank pain, and intermittent sharp pain in the left hip/iliac bone. After searching on this forum for spleen pain, apparently, I was having the spleen and hip pain back in October as I posted about it. I go back to the hem/onc in about a month. This has been daily recently and uncomfortable. Should I just expect this with CML/CML treatment and endure until next month or call the doc? I'm kind of getting tired of this discomfort.

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#2 Gail's

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Posted 18 March 2016 - 11:20 AM

See your doc or call and ask for spleen ultrasound. They will likely want to see you to check your belly for enlarged spleen but it should be resolving with TKI. The spleen takes a long time to heal and hurts during that time. I never felt pain in the hips from it.

Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

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#3 jmoorhou

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LocationOutside of San Francisco

Posted 19 March 2016 - 03:16 PM

I takes about a year for the spleen to calm down.

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 kat73

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LocationWashington, DC area

Posted 20 March 2016 - 03:22 PM

You'll get there, Mr. Tee!

Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.

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#5 tazdad08

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LocationTennessee

Posted 21 March 2016 - 11:59 AM

Spleen pain is a given for me.... It may not happen for months, but I know it will be back. It has been 4 years and it randomly comes and goes.

Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!

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#6 rcase13

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LocationCharlotte, NC

Posted 21 March 2016 - 07:44 PM

Yeah, 18 months it still gives me grief from time to time. Especially if I have been lifting heavy items or sleep too long on my left side.

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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#7 Frogiegirl

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Posted 22 March 2016 - 02:37 PM

Yep mine still aches often. .....it's more an annoyance then anything. But I'm sick of hearing myself say. "my side hurts". I'm attempting to use a heat pad on it now and stretch. ....need some relief!I always have my doc check it and he says it's normal. I don't Beleive it, it's been over 2 years now!

Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.