Javascript Disabled Detected

You currently have javascript disabled. Several functions may not work. Please re-enable javascript to access full functionality.

Having one of those this stuff (TKI) is going to kill me days

Started by tiredblood , Jul 02 2016 05:29 PM

Please log in to reply

10 replies to this topic

#1 tiredblood

Advanced Member

Members
474 posts

Posted 02 July 2016 - 05:29 PM

Feel swelled like a blow fish. My fat clothes are tight. Gained like 6 pounds in 2 days (I think). Persistent intermittent left flank and left shoulder pain, occasional sharp pain in spleen area, burning soles of feet. Got SOB walking at work yesterday. I'm torn between taking some old lasix I still have or waiting until Tuesday and getting properly diagnosed or assessed and info into medical record.

Thanks for listening to me whine.

Back to top

#2 Dona_B

Advanced Member

Members
104 posts

Posted 02 July 2016 - 05:58 PM

Please listen to your body. If you have a friend who is a nurse, please mention this to them or consider heading to the ER.

DX 1/14; Sprycel 100 Mg, liver toxicity; Sprycel 80 Mg; down to 50 Mg for 5 months. Numbers going up. Back to 80 Mg 10/16 (with 50s slipped in to use up) BCR/ABL: .0047 12/15; .0302 4/16; .0528 8/16; .084 10/16; .045, 1/17 back up on 80 mg Sprycel; .006, 3/17; .016, 7/17; Shingles 8/17

Back to top

#3 jmoorhou

Advanced Member

Members
314 posts

LocationOutside of San Francisco

Posted 02 July 2016 - 06:43 PM

I hate to tell you this tiredblood, but I would go the ER immediately.

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

Back to top

#4 tiredblood

Advanced Member

Members
474 posts

Posted 03 July 2016 - 10:25 AM

I'm gonna ride it out and see where it goes. I went to the PCP about it and hoped he'd order an abdominal CT but he ordered an MRI of the lumbar spine which came out ok.

Back to top

#5 Frogiegirl

Advanced Member

Members
259 posts

Posted 03 July 2016 - 10:40 AM

Dang we put up with sooo many side affects. .....disregarding them as "our new way of life" soldiers of chronic illness I guess. ...or prisoners. Feel better tiredblood.

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.

Back to top

#6 tiredblood

Advanced Member

Members
474 posts

Posted 03 July 2016 - 08:50 PM

Thank you, Frogiegirl. I'm just taking it easy and taking rest breaks.

Back to top

#7 Dona_B

Advanced Member

Members
104 posts

Posted 06 July 2016 - 03:19 PM

Tiredblood,

Was thinking about you and wondering if you had gotten any answers for your issues or if they have improved since the weekend.

DX 1/14; Sprycel 100 Mg, liver toxicity; Sprycel 80 Mg; down to 50 Mg for 5 months. Numbers going up. Back to 80 Mg 10/16 (with 50s slipped in to use up) BCR/ABL: .0047 12/15; .0302 4/16; .0528 8/16; .084 10/16; .045, 1/17 back up on 80 mg Sprycel; .006, 3/17; .016, 7/17; Shingles 8/17

Back to top

#8 tiredblood

Advanced Member

Members
474 posts

Posted 08 July 2016 - 08:55 PM

Well, I'm feeling a tiny bit better, but not well. Im back to my normal 5-pound weight range, although on the high end. I'm getting my labs drawn on Monday, then will see the hem/Onc the next Monday. I've actually felt more wiped out since starting the multivitamin with iron the doc told me to take. Honestly, I look for everything to check out okay with nothing showing why I feel this way.

Thanks for asking. I appreciate it.

Back to top

#9 tiredblood

Advanced Member

Members
474 posts

Posted 08 July 2016 - 08:56 PM

duplicate post

Back to top

#10 Dona_B

Advanced Member

Members
104 posts

Posted 11 July 2016 - 10:50 AM

Glad you are getting it checked out, hope you find answers, and feel better. Having lost two extended family members suddenly to congestive heart failure, I have a respect for similar symptoms.

DX 1/14; Sprycel 100 Mg, liver toxicity; Sprycel 80 Mg; down to 50 Mg for 5 months. Numbers going up. Back to 80 Mg 10/16 (with 50s slipped in to use up) BCR/ABL: .0047 12/15; .0302 4/16; .0528 8/16; .084 10/16; .045, 1/17 back up on 80 mg Sprycel; .006, 3/17; .016, 7/17; Shingles 8/17