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Hello again sorry posted in the wrong forum

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#1 SR Bruiser

SR Bruiser

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Posted 18 August 2017 - 03:04 PM

Hello everyone took awhile to find you guys but here I am, And here is my story

Diagnosed with CML Oct 2016, blood test, biopsy 11/2016     


Mid Nov started on Hydroxyurea 500MG 2X back to normal within a week, able to walk and breathe again, added Sprycel 100MG in mid Dec have been on it since, Hydroxyurea stopped mid Jan 2017.


Different side effects with each new LOT# of sprycel, small things, rash on fingers, bumps on scalp, hot/cold, eyesight, just flat fall asleep about after ½ hour of taking the PILL. I usually eat around 5PM than take the PILL by 11PM up and moving and ready to go in the AM.


Received Sprycel for July-Sept first dose was taken Mid July after 15 min noticed a bad taste in mouth, felt like I was on fire and the saliva would not stop had to sleep upright. In the AM still had bad taste, burning, saliva, hot/cold sweat, eyesight was really a mess. On day 9 I figured something was not right, all joints in hands and feet were swollen and now the right side of the tongue was so swollen it started to compromise my airway. Ended up in ER administered benadryl and prednisone took about 4 hours for swelling to subside.


Visited the Oncologist with no Sprycel for 10 days [that was nice] contacted Sprycel they were very helpful, received new Sprycel with a different LOT# started back with the usual small side effects so far.


03/2017    PCR 3.854

06/2017    PCR  1.467


Anyway thanks to everyone great resource and good info

#2 Jan0080


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Posted 18 August 2017 - 04:23 PM

List your PCR numbers. Ask you Oncologist to drop your dosage especially if you are getting a good response.
Diagnosed Dec 27, 2016 started Sprycel 100 mg Jan 7, 2017. Initial PCR 77.9 after 30 days 28.4, day 79 1.4 and day 115 0.1%. That is a 99.9% reduction! Sprycel 100 mg for 3 months, 80 mg for 1 month and now at 50 mg. Hooray for Sprycel!!! PCR June 5, 2017 0.04! Dose reduction to 40 mg 6/15/2017 due to shortness of breath. 20 mg as of June 29th. PCR .02 9/11/2017. PCR .015 IS as of 12/11/2017. Lungs substantially better. Low dose Sprycel works!

Adverse Effect - At about week 6 of Sprycel sharp muscle pain that would start at 2 AM and last for about 4 hours. This lasted about 4 weeks and went away, thank goodness.



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Posted 05 September 2017 - 10:19 AM

I had the same thing with the swelling of my joints and they even locked
up. After about a month on Sprycel. I hobbled in great pain to the cancer
clinic and they took one look at me and said that I was dehydrated. Gave
me some saline intravenous and pain drugs. Felt better in a few hours.
Felt markedly better the next day. Never happened again.
You need to drink plenty of water with Sprycel. At least 16 oz every time
you take your pill. And more during the day. Even though you don't feel
As for the bumps on head. I get those too. They really itch and sometimes
weep or scab up. It's the Sprycel attacking those benign little tumors.
Very uncomfortable but like I said they grow a bit for a few weeks and
are more itchy then they go away for a while. I had to cut off all my hair
for some relief. Goes with the show I guess.
I had the same bad taste in mouth, a salt water rinse helped.
Also the dry eyes. Nothing seems to help that. Eye wash in the morning
followed by eye drops, they call it eye lubricant seems to help for about
an hour. One of my eyes is more affected then the other.
Of course everyone is different. I tried taking the Sprycel all different
times of the day to find out the best time for me and settled on first thing
in the morning because the side affects are worse after about an hour
after taking the drug and last for about four hours.
This way I can be working or doing something that helps distract me from
the uncomfortable sensations. When I take it a night I'm sitting there
feeling everything. Everyone is different.
Good luck with your journey.

DX August 2016. WBC ~160K
PH+ Cells 36%
No Spleen enlargement
No Symptoms. Other counts ~Normal
BCR-ABL p210 (Detected)
BCR-ABL p190 (Not Detected)
Sprycel 100mg.
PCR   02/01/2017    0.146 IS
PCR   08/07/2017    0.022 IS
Next PCR:           12/XX/2017

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