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Hi! My introduction

Hello.

I am 54M. I was diagnosed with CML on October 5, 2017 after a complaint of pain in the left abdomen (due to enlarged spleen, as it turned out on the USG). WBC was at 180,000. A week later FISH and Bone Marrow tests confirmed CML.JAK was negative. PCR was about 20% IS. I was initially on Hydorxyurea for about 10 days. Started Imatinib 400mg from October 13.

CBC on October 30 showed WBC at 4500 and no abnormalities. Next appointment is on November 28. Doctor says I will do well. I have resumed normal routine from November 1.

I am not experiencing any major side effects except some change in bowel movement and puffed up/ bloodshot eyes. My Hb is low (8.9) and I have been prescribed an Iron supplement.

While daytime is OK, every night I am troubled and scared by the thought that I have cancer.

I Have been reading everything I can lay my hands on about CML and getting used to the terminology. I came across this forum while searching the net. I have read a few of the threads and feel somewhat comforted now.

That's my Introduction!

Hi Baktu

It's very normal to have night time worries about having cancer. Our worries and anxieties all surface at night unfortunately.Try not to worry too much as we are the lucky ones in that if we have to have cancer, CML is about as good as it can get. We now have a choice of 5 different drugs to treat it and the majority of us will live out a normal life span. I was diagnosed 8+ years ago and lead a pretty normal life. I think we all remember the early days of horror and fear after diagnosis- it takes time to come to terms with it. You don't say where you are, but if you aren't in the UK do join the International Facebook CML page "Journey to a Cure" which enables people from various countries to discuss issues including funding the medications.

GIve yourself time and your fears will settle. October is still a very recent diagnosis so be kind to yourself and believe that these unpleasant nights will pass.  You will see your PCRs coming down and begin to feel more positive about the " condition".

Ask anything you want as we have all been there and someone will always have an answer.

Good luck

Best

Chrissie

Thanks. I stay in Mumbai, India. I will look at the international cml forum. 

Hi Batku, and welcome! It sounds like you are in as good a place as possible for a newly diagnosed patient. Numbers look good.

Though we are UK based, we are open to everyone around the world. If you have any questions, there are so many people here who have been through the same as you. None of us are the same, but many of us share many things.

David.

Thanks.First monthly review is on 29th. I have to go with a CBC and a Liver Function test Report, to be done on 28th. Keeping my fingers crossed 

Give me a call onWill help you deal with any initial issues that you might have. As the others said it's a blessing that you have cml and that you were able to diagnose it. It's not so difficult going forward.

Thanks, Amit

Got the CBC and SGPT done today. SGPT at 27.3 (IU/L) looks OK.

Differential counts are all fine

RBC, WBC and Platelets are below lower range.

Appointment with haematologist tomorrow.

At diagnosis, on Oct 6, Platelets were 396 x 10^3/mm^3. On Oct 30, after 15 days of Imatinib- 297. Today - 103. Seems like a steep fall...

Hi David just a quick question the 6 month bcrabl test to determine complete cytogenic response does one have to also do another bone marrow as well or is bcrabl enough?

Hi!

Some doctors don't do bone marrow tests at all, even at diagnosis. PCR tests from peripheral blood are often enough to tell the doctor what they need to know.

Complete cytogenetic response (CCyR) is usually correlated with a PCR from blood of below about 1.5%. So that means if your PCR is below 1.5% (on the international scale) you are likely to be in CCyR.

Of course the only way to totally prove it is to look at the bone marrow. But increasingly doctors are thinking "what's the point?". Others still stick to older guidelines to prove the CCyR, and indeed mine did. I don't have a problem with bone marrow aspirations so didn't mind, but I know a lot of people really hate them.

David.