My son had a yearly health screening thru work last fall and told to go to his family doctor. His wbc were 67K Doctor sent him to the cancer center after a CBC. The oncol testing him for CML blood work and BMB. His blood work was sent to NJ and got frozen and had to have it done over again. He started Gleevec 400 on Jan 19. He had bone pain and is now on G 300mg. He also gets his 3 month checkup in May.
My other sons new gf had lymph gland swollen in leg last fall. had it removed and biopsy was cancer. She had pt scan and showed 4 swollen lympth nodes. Her blood work is fine. I believe she said it was Hodgkins Leukemia. Her oncologist said it could take up to 20 years for it to show up in the blood. She gets checked every 3 months, now.
Well I was checking CML out on the puter, over my son. While I was having night sweats, fatigue, diahrea and stressed out. I made an appt with doc for left pain under my ribs in Dec. That pain diappeared before I saw the doc, but every joint in my right leg hurt the night before. I couldn't stand sit or lay down. Doc gave me script for that. I went back complaining about flu and diahrea, loosing 20#'s in Jan 24th. He put me on diahrea med and antibiotic and said to come back in 3 days if not better. I went back in Friday Jan 27th and he had blood drawn. The nurse on call phoned me that night 9pm to go directly to ER and get admitted. I had wbc of 194 k and platelets were 970 k. I figured then I had CML. I was on hydroxyurea by midnight. Also allopurinal. I am only on Gleevec 400 mg now. I suppose this all had to be approved by my insurance, which takes time. I am doing great with just a few side effects, which I can live with, there not slowing me down any.
I phoned my sister and told her about the CML and taking hydroxyurea when diagnosed and she said she was on hydroxyurea also. Her platelets were 86k 2 years ago and still on the hydrox.
Thanks for all the info from each and every one of you. It is very helpful site to be on. I will check about the PCR testing when i go back in May, My son and I are both scheduled for a BCR_ABL soon.
1 2012 CML detected Started Gleevec 400 mg
In nov 2014 my pcr started to rise by Feb I stopped Gleevec and went onto
2 2015 Tasigna 600 mg/day
I have been PCRU for 2 years and stopped Tasigna 4 7 2017
5 8 2017 results 0.008
5 30 2017 results 0.028
6 30 2017 results 0.3, I have restarted the Tasigna because it went above 0.1
11 2011 CML detected Started Gleevec 400 mg
He went 2 1/2 years on gleevec and lost PCRU
Started Sprycel went PCRU for 2 years and stopped the Sprycel, went back for 3 month checkup and PCR was 8.0
He went back onto Sprycel and now is PCRU again
3 16 2017 results 0.008
6 1 2017 results 0.002