Thanks for reaching out Skip. It is all so overwhelming that I'm trying to backburner all the comments people make and the misconceptions and focus on what I have to do. I'm glad I found this website. Susan
On Wednesday, November 12, 2014 2:59:35 PM UTC-5, easyskip_2002 wrote: > 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] <javascript:>> > *To:* [email protected] <javascript:> > *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] <javascript:> 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] <javascript:> > To unsubscribe from this group, send email to > [email protected] <javascript:> > 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] <javascript:>. > 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] <javascript:> > To unsubscribe from this group, send email to > [email protected] <javascript:> > 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] <javascript:>. > 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.
