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Francis- 'French Guy'- feeling desparate

Hello; yesterday I had to go
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Submitted by Frenchguy on Tue, 03/06/2014 - 18:04.
Hello; yesterday I had to go to hospital because of quite big pain on my thorax. They haven't found anything but they did a blood test and my wbc were the same than the last week at 10500. Il feel desesperate because I don't understand why they don't decrease under 10000. Is it normal after 24 days of being treated by tasigna?
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Hi Francis,
try not to panic, your wbc will go down- maybe a little slower that you hope, but remember it is within normal range. As you had a pain in your throat it could be that you have an infection and that is why your white cell counts are affected and could be a little higher in order to fight the infection.
Normal white cell counts vary between individuals and of course vary according to bacterial infections, virus infection etc. etc.

Normal = anything between 2 and 12 (2000 and 12000) per ml of blood.

Try to relax and give your therapy time to work.

Sandy

Thanks again Sandy for your support.
Today, my onc told me that I was in hematologic response.
I was happy to see that tasigna is a good drug for me. I haven't done my first PCR because Nicolini told me that it was too early. I will do it in 2 months and he told me that I should be under 10% otherwise it will be a quind of failure;
I will be in the fog for two months and I asked him what is the average of people who respond to tasigna : He answered me that 90% are under the 10% marker. In the other case, I shoud maybe switch to another tki. Anymay we will see, as I am a negative person by nature I try to think the worse sometimes and I know that even people in AP or Bp can survive so I think that just a very few people don't resist to this illness. I hope it is the case but I know that the first year is the most important.
I try towake up my mind especially as I discovered in a french study that about 20% of cml patients don'trespect the compliance so that could be an answer of some evolution of cml.

Hi Francis,
Yes you are right... many people do not adhere strictly to therapy. It has been shown that between 20-40% of CML patients miss some doses on a regular basis. This can be the basis for a loss of response, or not achieving low molecular response. Try to think the best possible outcome is achievable for you. If you miss 3 daily doses per month it can impact on your response. So it is vitally important to take your therapy every day as prescribed by your doctor.
If nilotinib does not get you to below 10% at 3 months then I am sure your doctor will switch you to another TKI and will make sure you are on the correct treatment according to your results.

Your doctor is right to say PCR is not a relevant test at this early stage of your treatment. When there are high numbers of PH+ cells, such as at diagnosis and before TKI therapy has had a chance to work cytogenetic/FISH tests are used. But when those tests confirm that there has been at least a significant cytogenetic response (e.g PH+ cells are below 35%), PCR testing is extremely accurate at measuring the BCR-ABL1 gene at low levels.

Try to be as positive as you can. The majority of CML patients diagnosed in chronic phase over the last 15 years are surviving well with TKI therapy. There is no reason to think that you will be any different. I was diagnosed in AP... and thanks to imatinib and then an SCT, I am here and CML causes no problems for me.
I hope you can meet with Barbara and others, I am sure they will be able to reassure you.

Best wishes, Sandy

Thank you Sandy for these precious informations. To be more precise in my illness and as I forgot to say I am ph masked but with the bcr abl fusion, and I saw in some old articles in the net that pronostics were bad, that is why I am a worried. My onc told me now that with tki, the response is the same than ph+. So if the tasigna doesn't work in the next two months my onc will swap me to another tki? In the worse case, can I expect some other possibilities and to finish will new tki be develop in next years with a possible cure. For example I saw that measles vaccine can cure cml. Sorry to be a bit borring with all my worries and questions.