Hi Brittbratt,
You’re post caught my eye as you have similarities and also differences to my particular story and I hope I can help you a little bit with your questions.
Firstly I had never heard of the e14a2 type and finding out new things like that is why I really like this site and find it fascinating. There is a real wealth of information on here and I’m always learning.
At diagnosis I had a very high WBC and low heamaglobin at 8.6. My platelets were normal which is where we differ, but I believe the reason our hb was low is because of the same thing. It was described to me that your body can only produce a finite number of stem cells which go on to become White, Red or platelets. For me the majority of these cells were becoming white cells and not allowing the red cells and therefore haemoglobin to be produced, which is why my hb was so low. It looks like you have had the same reaction but to excessive platelets. Once you start taking a TKI, that normalises your blood and you begin to produce all the blood cells in the required quantities again which is why your hb is now rising nicely (and you’re likely feeling much better!). Think of it as your body isn’t in overdrive producing platelets, so now you have capacity to produce the red cells again.
Your spleen was likely enlarged due to excessive platelets and the filtering of the dead cells. For me again it was White cells that were excessive and caught in my spleen, but as soon as the TKI’s normalised my blood my spleen decreased to normal as it wasn’t having to harbour so many cells.
As for LDH, that was actually how I was flagged up as having something wrong with me in the first place. A blood test for something else showed it was raised. It was very high and it is a non specific marker of tissue damage. It’s an enzyme given off by cell death and can be an indicator for a whole host of problems, not just cancer, and for people with CML, LDH is likely elevated especially if blood counts are all over the place. As long as CML is the cause of the elevated LDH then it should drop as blood counts normalise and is a good marker as to whether treatment is working as expected. It is not however the only way the disease should be monitored. It’s a useful tool for working out if more in depth investigation is needed. I’ve not had FISH tests but had several PCR tests and you need to find out if you have had either done yet, plus you will need at least the PCR going forward.
Finally, as for not knowing how early you have caught the disease, no one knows for sure how long they have had it. You know what phase you are in and Chronic phase is where you ‘want’ to be but you could have been in that for years without knowing.
You need to ask your specialist a few questions about how you are being monitored but your initial results are encouraging with a return to normal blood counts. That’s the first goal, after that it’s essential more in depth analysis is done. I’d say so far so good, but ask questions and if you aren’t happy ask for a second opinion. The fact it’s raised platelets and not white cells is a completely new one on me though.
I’ve used this site to help with questions and worries and I’m sure i’ll be asking questions again soon as I’ve had other issues in relation to reactions to medication. I’ve found most of the answers just by searching old threads which is great as someone has generally dealt with what another person has, even if it’s quite rare.
