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New Here Short Break from Gleevec

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Hello Everyone,

I was diagnosed on September 29th 2019. I went in with a kidney stone, they got some blood and my WBC was 78,000. After a CT Scan they didn't find anything abnormal (spleen was normal). After 5 days in the hospital a bone marrow biopsy I was told I had a kick ass immune system and I could go home. The day of my discharge my hemo came in the morning to send me off by the time everything was typed up he revisited me again to tell me I had CML. I always felt like something was wrong, even when they said there was nothing.

I have been on Gleevec for 40 days. My side effects have been manageable. I have experienced mostly bone pain, nausea, diarrhea, abdominal pain, fatigue. As I said manageable, I have had Kidney Stones 21 times, the pain of my symptoms are mostly a nuisance. I do not know what my BCR-ABL is, my first test was today Nov 21st. I responded to the medicine as far as my WBC coming down from 78k to 8k in two weeks, currently WBC is 4.25k. All of my other counts took a hit but have rebounded since, most of them are normal now.

That is my story. Now for my questions!

I developed a throat issue 7 days ago. It feels like something is stuck in my throat. It has gradually gotten better but I have to drink a lot of water to keep myself from coughing. I had my Thyroid levels checked and they are normal. I am also getting an ultrasound on my thyroid Monday the 25th to be sure. Has anyone experienced this?

Additionally my abdominal pain has become more frequent. I too am feeling some discomfort/pain in my armpits. All of this has brought my doctor to the decision of a break for 7 days. I do not support the break as the treatment is early and I dont want it to have a negative effect on the outcome. Does it make since to take a break without knowing my BCR-ABL?

I am feeling really anxious about this and it has turned my life upside down. Any advice is greatly appreciated. This site has helped so much already.

Thank you
Shawn

Hi, I understand your concerns being this early in treatment. I am just a few weeks ahead of you. I had to stop for a week because of neutropenia. My doctor assured me that its common practice early on in treatment. With regards to your throat...I was having esophageal spasms a few weeks ago and my doctor started famotidine which has helped. Seems like the number of strange aches and pains is endless... hoping you get some relief.

I was given a 7 day break from nilotinib about the same amount of time into treatment you are.  Like you my blood count numbers had come quickly back to normal ranges but I did not have a PCR test yet.  My doctors were not concerned that the CML was going to make any forward progress in that amount of time, and said so directly.  Since then I've had two PCR tests and both show that much progress has been made.

Thank you for the replies. I think some of my throat stuff is anxiety. I have been having a real tough time keeping a level head. I see a therapist soon, hoping it helps.

It's interesting that you mentioned frequent kidney stones. Before he was diagnosed, my husband has had very frequent kidney stones for a few years and I kept telling him it wasn't normal at all and he kept poo-pooing me even though the kidney stones would be as big as a pony bead (those beads little girls put in their hair sometimes)! Is there any link to kidney stones and CML? Anyone else have frequent kidney stones?

Katie