HELLO MY NAME IS JOSE, I HAVE CML , I WAS DIAGNOSED IN FEB 2008 ,I AM GETTING TREATMENT IN TIJUANA MEXICO , HAD 250,000 WBC, AND A HUGE SPLEEN , I STARTED TREATMENT (HYDREA)TO LOWER MY WBC COUNTS , THEN STARTED ON GLEEVEC 600MG ,I HAVE RESPONDED WELL TO THE DRUG HEMATOLOGICAL RESPONE FIRT TIME I HAD A FISH DONE DOCTOR TOLD ME THEIR WERE OTHER ALTERED GENES BESIDES THE PHILADELFIA CROMOSOME, 2 FISH TEST CAME 100% PHILADELFIA CROMOSONES BUT, THE OTHER ALTERED GENES WERE GONE. JUST DID 3 FISH TEST AND WAITING ON RESULTS , HOPEFULLY THIS TIME PHILADELFIA COMES LOWER OR IS GONE , KIND OF NERVOUS EVERY TIME I GO TO DOCTOR , BUT MOST OF THE TIMES I AM FEELING EXCELENT LIKE I HAVE NO DISEASE , ANY ADVICE OR INFO
WOULD BE VERY APRECIATED THANKS
You are here
my cml , kind of worried
Hi Jose
sounds interesting, but don't you worry too much, seems as though your doctors know what they are doing, so see what happens at your next test, I found keeping a record of test results works well, and then you can look back with interest at your progression towards your cure.
Always have fun, and always keep smiling
Keith
thank you keith for your reply ,i did make a mistake on the fish test it is actully a cystogenic test , yea my doctor keeps telling me not to worry so much ,sometimes easy said then done. well thanks keith if you have any other suggestions let me know .
bye
Hi Jose,
My son was diagnosed with CML in May 2008. I've reviewed every medical test and questioned every result. Sometimes the doctors remind me that my son is still very early in the treatment process. It may not be a singular test result that's important, but rather the overall trend from several tests. It may take many months or years to have a complete picture.
In my case, I'm happy to see my son's numbers going down. Whenever we have the slightest positive result, we celebrate. I think you should not fret about any one particular thing. Realize that you have a chronic condition - that is slow and long term. There will be ups and downs. Treatment takes time. Allow your body time to recover with Gleevec.
Get enough sleep and eat well. If you feel depressed, please seek out counselling - it really helps. And hang in there! Your results are so positive right now, you should be pleased!
Good luck.
Tracey
yes this treatment is very amazing , and i have gotton a lot of benefits from gleevec,you are so right , their are many things i should be more pleased , i am going to start implementing that every day,
thanks tracey ,i am very glad your son is responding well to his treatment ,and i wish for you and your son to celebrate millions of more times , bye
Hi Jose and welcome,
I hope your current test results are good and show your continued response to imatinib is good.
I know it is hard not to worry, but do take heart from others who have been on long term therapy with imatinib and maintained remissions.
What stage of disease did your doctor say you were diagnosed in? Is there a patient support group (informal or formal) at the centre you go to? It always helps to find others with the same disease to talk to and share experiences with. If your doctor has other CML patients then it might be good to form some sort of group so you could support each other.
Please keep us updated here about your results etc. and if you have any specific worries then please share them with us.
best wishes,
Sandy
my doctor had told me that i was in late chronic phase, when my first cytogenic test was made their was philadelfia cromosone and 2 other altered genes , so i was put on 600mg, second cyst test came only philadefia cromosone 20/20 ,doc told me to keep on 600mg,just did my third test and waiting on results ,doc says hopefully this time it comes less or no philadelfia ,other wise have to increase dose or switch treatment (nilotanib,dassatinb)i have been felling good these days , sleep has been a issue and when i dont get enough ,my emotional state vary from worrying, to getting irratible, but overall pretty good .doc says not to worry so muchh.thanks for giving support