Susan My name is Skip(Stewart Duffie) I was dx in 1977, they think I am the longest survivor in the world, (go to qe2 foundation search for Stewart Duffie) I have never had the pleasure of going in remission, I fight the good fight every day. I go for infusions twice weekly. I have had cml throw everything at me and still feel pretty good for my age etc. I have been on Gleevec, nilotnib, and dasatinib, and back on Nilotinib. I was on myleran for 27 years, when people tell you its only a pill, well you tell them try one it is chemo. all these drugs in a healthy person would drop their white count, red count, neutrophil and absolute neutrophil count. it is Chemo. One of my secrets is do not let them get you down, it is a serious cancer, but can now be controlled not like when I first started. my Hem Doc still tells me I am special. You came to the right place to be with friends who understand. like Marty Greenie etc in fact just about everyone that comes here is very special and have been touched by G-D Skip dx when dead was just sick.
________________________________ From: Myvety2k via CMLHope <[email protected]> To: [email protected] Sent: Wednesday, November 12, 2014 2:23 PM Subject: Re: [CMLHope] recently diagnosed Susan, that's a great name my daughter's name is Susan. Well here's the deal, some people may agree with me some may not. I started Gleevec January 10th 2000 on 400 mg. I received a rash, I was in one of the first studies in Chicago. They had no idea about the rash so they dropped me down to 300 mg and the rash went away after a few months that has been for over 14 years. Their are side effects everyone gets them, some bad some no so bad. As for a cure for CML their is none, what you get is remission. I am in remission but I still have to take Gleevec I stopped 5 years ago for 23 days and when we did my blood work the cancer cells showed back up in my blood. Their have been a flew people that stopped Gleevec they are cancer feel but not everyone is that lucky. They can do transplants put for me I was to old, 60 at the time and Gleevec wasn't out yet they approved it I think May of 2001. As for this CML group you could have not come to a better place, we have people in this group that I think no more then the Doctor's do, they don't have CML we due. Just hang in their and I sure things will work out for the best. Any question's ask away their are so many good people here that will help you. Good Luck, Greenie Fort Myers, FL. In a message dated 11/12/2014 10:29:59 A.M. Eastern Standard Time, [email protected] writes: I was recently diagnosed with CML. I had a bone marrow biopsy and started Gleevec last week. I'm seeing an oncologist who I met two weeks ago and seems very competent. My question may be weird but I'm having co-workers, family members etc. saying things to me like "what's the big deal having to take a pill? I have to take an antibiotic for my tooth infection," or "my arm is in a cast from having an operation." Am I being overly sensitive finding these remarks insulting? I just got off the phone with my sister who said, "plenty of people are cancer free and get `cured,' of leukemia." I tried to give a speech about remission and response and CML and it fell on deaf ears. I just think the aggravation I'm feeling can't be a good thing right now. >Besides that, I was glad to find this group online and now feel like I'm not >so alone. > > >Susan -- >-- >[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. > -- -- [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. -- -- [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.
