Just started on 400mg of Imatinib per day with Allopurinol along side!
Will watch for side effects.
I wanted the doc to put me on Procrastinib but he said he'd think about it for next month.
Anyway, I had a blood test for my cholesterol level and they did a full bloods. Came back high white cell count twice so my doc referred me to haematology.
And that was that Philadelphia!
Best wishes to everyone
Gareth
Hi Gareth,
Welcome to our unwanted club. Side effects are a given on TKI some are worse than others and some disseaper quickly or new ones come on much later on in treatment.
Yep a high white count is the first sign of CML I was x30 times over the limit so it sounds like youve been caught early which is a good thing.
We are a nice bunch on here so if you have any questions we will do our best to answer them. You'll have many questions no doubt going forward.
I have never heard of Procrastinib? For a new diagnosis you'll typically start with Imatinib or generic. 2nd gen Nilotinib, Dasatinib or Bosutinib if you are late chronic phase or a high Sokal score or accelerated phase. 90% are diagnosed in Chronic.
Al
Hi Gareth,
I assume your clinician will take your off Allopurinol within the first couple of weeks. This drug is used to reduce a high white cell count and it will do that quite quickly. So side effects from imatinib (if you have any) will be easier to gauge when you stop Allopurinol.
Ponatinib, is usually given if you show resistance to at least imatinib plus another TKi and if you do not have any co-morbidity such as a cardiac issue. Is there a specific reason that you want your doctor to prescribe ponatinib (Iclusig)?
Alex, just wanted to say something about high white cell counts at diagnosis. It does not mean that a lower white cell count (at diagnosis) means that the disease has been 'caught early'. That also depends on other factors such as platelet count, HGB, blast cell % and spleen size.
An example of this is my own case, my white cell count was 17 at diagnosis (1999) and yet I had an enlarged spleen, low HGB and a steadily rising platelet count. Blast cells were at 5% but not rising. So in spite of the low white cell count, I was clearly in late chronic if not accelerated phase. So it's not always so simple. Nevertheless, imatinib 400mg then 600mg daily eventually got me back to early chronic phase and basically saved my life.
Sandy
Oh my bad. When I was diagnosed before I had my FISH my consultant said that I’d prob had CML for 3 years due to my high white cell count of 330 (which I understand causes the increase in spleen size too). So by that assumption I would have thought that a higher white cell count was mostly indicative (maybe not always) of how long it’s been out of control and hence my comment. If that is wrong then I apologise to those that I am giving false information. I’ll wind my neck in 🤣
My blasts after my fish were 1%, presenting PCR 13% (very low) 900 platelets and 330 wbc. But enormous spleen. Maybe blasts is the only reliable thing to decide disease progression and if that’s the case was I “early” or was I “late”?
Hi Alex,
Please do not think I was saying you were wrong or giving false information, I was just trying to say how complex the whole thing is and the white cell count on its own, does not indicate early, middle or late stage disease .- I think we hear so much about cancers being caught 'early' but this often refers to solid tumours, like breast cancer for instance, as opposed to leukaemia/s which are often referred to as a 'liquid' tumour.
Please do not 'wind your neck in' as your posts are always based on real world evidence and very helpful and supportive....BTW that phrase reminds me of my lovely dad - but he used to use the phrase 'pull your head in' when anyone stepped over the line - which I did quite often 
When I was assessed at diagnosis I was told I had probably had CML for 5 years - but that was not based on my wbc (17per/ml) but the other markers like blast %, spleen size (which in my case was the only reason I went to my GP) plus a very fibrotic marrow.
In fact the first haematologist I saw thought I had Myelofibrosis which is another myelo-proliferative disease or which there are several, until they did a qualitative PCR test (yes or no) from the bone marrow biopsy, as the cytogenetics/FISH tests did not show any PH+ cells because there were so few in my peripheral blood. The irony is that if it had been primary Myelofibrosis it is unlikely that I would have survived over the longer term, as the prognosis for MF is not good and there are not many treatment options available.
My low wbc had always puzzled me, and when I asked about how it could be so low - given my late CP status - one of my clinicians said that sometimes the abnormal white cells are quickly filtered into the spleen rather than remaining in the peripheral blood. This is why my spleen was so enlarged that it had to be removed - 1999 was just before the TKI era.
Sandy
Hey Sandy,
No not at all thank you for your reply we are all learning on this journey 😀. Yeah it’s all a bit of mystery all the numbers. I have to this day remained slightly paranoid of my very low presenting PCR of 13% 3 years ago. For me I never really felt that I knew how well I had responded because 100% which is the norm to 10% feels like a big drop where as for me I started at 13% and dropped to 2.1% after 3 months. Then MMR after 2.5 years. But I am told all this has no clinical significance.
Haha yes I love that saying more in the sense of “I stand corrected”.
Ill be a bit more careful as you’re right there doesn’t seem to be one indicator alone as to how far along someone is on their journey and does seem to be a lot of differences between our diagnosis.
Thanks for your advice Sandy.
Alex
