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New member of the club I didn't ask to join

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Hi everyone, I've been watching this forum for a while and let me tell you, it has been a lifeline!

Diagnosed in Nov 2021 and what a wild ride!  Highest WBC my doc has ever seen, also one of his healthiest patients (his words) 2 trips to the emergency room, and 3 different doses of Sprycel. Now on 50 mg.  Thank you Scuba for the info and links!  CBC in completely normal range, BCR-ABL at 24% last test, retesting in 2 weeks

Weird side effect, I feel like there is something tight on my neck, like I'm wearing a turtleneck sweater (currently wearing a tank top) Has anyone every experienced that before?  I had it at the beginning, but it went away.  It's been about a week now.  A very external sensation, no issues with swallowing.

I had neck pain with imatinib. I found straining muscles on that drug did not help matters. Never been on Sprycel I’m sure it has a whole host of sensations in its little bag of side effects. Ya strange things happen on TKIs. The other day my nipples felt like they were on fire…

How high was your BCR-ABL when diagnosed? It seems like a slow response to Dasatinib but not unheard of. I was at 23% after three months. 1.9% at six months all on 100mg. It sounds like you had a couple of treatment breaks.

Any advice or words of encouragement would be greatly appreciated.

Bone marrow results 64% at diagnosis but not in blast, spleen measured 22 cm.  1st E.R visit was b/c they thought my spleen was rupturing (it didn't); 2nd was b/c they thought I was stroking out (I wasn't; it was 'just' a ruptured blood vessel in my eye w/ floating CML cells).  All within the first two weeks of being diagnosed.  Did I mention the wild ride?  I started on 100 mg but had blood every time I blew my nose plus little red dots on my legs, meaning burst blood vessels.  Plus my platelets bottomed out to 20.  Off meds for two weeks, dose reduced to 80 mg.  Then I started having confusion and facial swelling, so I sent some links to my doc that Scuba posted about reduced dosage,  Doc reluctantly changed my dose to 50 mg, which I am currently on.

I had a blood draw yesterday and my platelets and wbc have elevated out of range on the high side, my hemoglobin and red blood cell count have dropped below range.  My iron is low, and I want to avoid a transfusion at all costs!

 

What are your individual blood counts?

Neutrophils

RBC

Platelets, etc.

 

On July 3 and 4th we spent time with a couple (including a 3 hour car ride up and back into the mountains) with a couple.  They let us know that they had covid symptons on the 5th, (tested positive on the 6th)  We (hubby and I) started taking a vitamin C/Querctin complex.  We had no Vid symptons, but I have been physically tired all week.  Wondering if that is what could be messing up my numbers.  Blood draw on July 13th.  Previous blood draw one month ago and all my #'s were IN range.  Does this just happen, these crazy ups and downs?

Rocky Mountain Gal sorry to hear about your wild ride. Your symptoms sound severe. Basically early on a TKI should reduce your BCR-ABL to a much safer level quick within a few months but surely on a steady downward path. Maybe Sprycel is not for you. Have they suggested another TKI like imatinib or nilotinib? High out of whack CBC counts in the beginning are typical but definitely need to watch for sure.