Hi Skip and thanks so much for that update! You are truly a wonder! This is my 12th year fighting CML so I'm just a baby hehe. I also failed on all the tkis and was put on the newest: Ponatinib. It is working good with little side effects. There is only one other CML warrior on this drug: John. Can we hear from you John? I have had a bad side pain that the test don't show anything, but it is a bad pain so just have to treat it. This pain started to get bad on Tasigna. I had to have transfusions too on Tasigna and as you said, not a bad thing to go through just time consuming. I am just thankful for each day and for our CML warriors who help us through the battle so we are not alone. Have a wonderful Sunday! Jeanie<3 In a message dated 4/17/2016 6:43:38 A.M. Eastern Daylight Time, [email protected] writes:
Hi Skip Wow 38 yrs and such a journey you inspire me. I thought my 18yrs was long thanks for letting your story thanks Shannon On Sunday, April 17, 2016 at 5:40:25 AM UTC+10, skipd wrote: Well for those who may not know me, Name is Stewart Duffie (Skip) I have had CML for about 38 years now. When I first was diag in 1977 there was not much in the line of drugs, in fact there was none except Myleran. I survived with drug for 27 years, the Hem docs said to my GP let his counts go up until over 100,000 (wbc) and then start myleran at 2mg a day until it comes down to about 50% then one mg a day until it gets down to about 30,000 then 1/2 mg until about 20,000 then stop. Let the wbc drift until until it gets back to over 100,000 then repeat all over again, we did this every year until 27 years was up then my spleen started to act up. Wheee there was a new drug would I go on the trial .. yeep Imatinib would be my new drug It was not cheap, but we went on it until after about 2 years my Hem doc it was not working, beside he wanted me to try new drug call Nilotinib, same company just stronger, so I took nilotnib until it failed after some time. but we have a new drug coming down the line called Dasatinib lets try that. That game so much plural Infusion they had to quit. went back on Nilotinib. I was in my 30th year with CML. I gues the doc thought it was a lost cause so he said will see you in six months, well by that time my WBC. RBC, Plts, Neut, and ANC all we in the critical stage, started getting blood and platelets twice week That is every Tue received platetlets IV . platelets and Fri IV Red Blood Cells. The my Ferritin started going up until now it is over 9,000 it should be 200 I get Desferol three time IV for it. My Platelets are low due to all these ddrugs over the years killing my bone marrow so I cannot product plts. Red goes down but not as fast. I see all of you with CML that have such a hard time. Yet I am just coasting through this feeling not to bad, have had some rought spots, but all in all I feel not to bad I am getting up in years now, For those of you needing infusions it is not too bad, I have a PICC Line in (see utube Purple PICC lines ) People donate blood and plts how kind as I get single donor platelets Apheresis Platelets) which take a 4 hours to give. other than cml I am healthy Next I want to thank Marty and I candoallttc asking me to talk about my journy with CML . Thanks so much for your interest. On Thursday, 14 April 2016 13:13:02 UTC-3, skipd wrote: I did not know about google cmlhope. I lost yahoo a year or so ago and never could get back on. I am now back on google and thanks to Marty all seems right with the world. I have had CML for a long time and will go off and on the internet depends on where my blood and platelets are. all that means is how tired I am. I do read all the posts when I can. I want to say hi to all the long timers and the newbies to CML. I think someone once called me an urban legend, which I am not just old and wasting the takpayers money. If anyone is interested I would give me stats, but I am sure most of you are tired of it.. health to all. Skipd -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]_ (mailto:[email protected]) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/d/optout.
