Yes Beth I've had it so long and still alive and kicking. Hehe I've been hurting worse since I went on Ponatinib. Moffitt pain centers won't treat me and I don't think that's right. They have 2 pain centers and they both turned me away. Moffitt says they treat the whole person; I'm beginning to wonder about them. I've been going there for 7 years and they don't want to treat pain? They told me to go to private pain center but those don't take Medicare assignments. It seems they are always looking for something else to treat instead of being glad my CML is good b
My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center > On Sep 12, 2016, at 7:26 PM, bkbarney via CMLHope <cmlhope@googlegroups.com> > wrote: > > Still navigating side effects from antibiotic for the bite....not sure what > is bite and what is antibiotic related but I still feel " off" and > crappy...but, tomorrow is another day and I am sure it will get better... I > just hate your mystery pain...I know you have had so many tests..maybe a > hernia they cannot see??? something is hiding..but not life threatening..just > a serious nuisance. > > I am thinking of you.. > > Love, B > > > -----Original Message----- > From: 'Jeanie' via CMLHope <cmlhope@googlegroups.com> > To: cmlhope <cmlhope@googlegroups.com> > Sent: Mon, Sep 12, 2016 6:12 pm > Subject: Re: [CMLHope] Just checking in > > Hi Beth and so good to hear from you. > My liver test all come back good. This is a mystery pain and they can't find > out what it is. Would probably have to have surgery to find it and I haven't > wanted to risk it. > I just take it day by day. Did your bite get better? > Hope you are good. > Blessings > > My Motto: > Faith and Pills > With Love > 🐠18's > Dx 1/2004 CML Leukemia > Started Gleevec 2/2004 > Started Tasigna 9/2009 > Started Sprycel 11/2009 > Started Ponatinib 1/2015 > Doctor Balducci Moffitt Cancer Center > > On Sep 12, 2016, at 7:00 PM, bkbarney via CMLHope <cmlhope@googlegroups.com> > wrote: > > so sorry jeannie, my mistake. Under right rib..would that be liver pain???who > knows???? I feel for you, whatever it is...you have such a great disposition, > and sense of humor..hehe...that just makes me smile...so you take care and > have ag reat day. > > > Love, Beth. > > > -----Original Message----- > From: 'Jeanie' via CMLHope <cmlhope@googlegroups.com> > To: cmlhope <cmlhope@googlegroups.com> > Sent: Sun, Sep 11, 2016 4:04 pm > Subject: Re: [CMLHope] Just checking in > > Hi Beth and so sorry you got bitten. I was once bitten by a scorpion. That > really hurt. > Yes it's good to hear from everyone so keep posting. > My ct scan showed several things wrong but this old body is aging and I'm > taking a powerful chemo. Some times I wonder if I really want to know what's > inside my body. Hehe > Don't know what to do about my pancreas. I've read that diet is really the > only thing you can do so I'm on low fat diet and low sugar. I had my pain > before the pancreas showed up bad do unless my pancreas is under my right rib > I don't think that's the pain problem. > I have no in digestive problems. Strange. > Well day by day trusting in our Light. > Blessings. > > My Motto: > Faith and Pills > With Love > 🐠18's > Dx 1/2004 CML Leukemia > Started Gleevec 2/2004 > Started Tasigna 9/2009 > Started Sprycel 11/2009 > Started Ponatinib 1/2015 > Doctor Balducci Moffitt Cancer Center > > On Sep 10, 2016, at 12:37 PM, bkbarney via CMLHope <cmlhope@googlegroups.com> > wrote: > > Dear Norm, > > Long time know hear from you!!! It was wonderful to catch up and be reminded > of your history...I hope that you can retire well when the time comes. Good > news about your son...I remember you sharing about Mr. Hans....so sad....Mr > Buster sounds like a stitch..hopefully he both trainable and lovable. What > an amazing thing that you have been on Tasigna for 12 years...I know you have > had your ups and downs...but it is still inspiring to hear....so thanks... I > needed the inspiration today..and Marty...we are all here..cheering you > on!!!!! > > for everyone out there today who might read this...all the usual suspects, as > well as those who read but don't post...thanks for being here... > > my news is that I got bitten by a poisonous spider in the leg... blew > up...huge red swollen..then antibiotics for the infection which I had a bad > arthritic reaction to..I think personally it was an interaction with > sprycel...but anyway, I have so much pain the last three days in my knees and > legs.. I can hardly walk...so, off the antibiotic today..and hopefully the > infection will get better with time...or they will put me on a new one to > try...always something...but I still am blessed..and happy for my > sprycel..keeps me here...enjoying the sunsets..and the coming fall...and my > 17 year old pouch.. Gracie....just adore here to pieces... so understand > Norm, your comments about Hans. > > Love to all, 18's Beth > > > > > -----Original Message----- > From: Norm <norm5...@hotmail.com> > To: CMLHope <cmlhope@googlegroups.com> > Sent: Sat, Sep 10, 2016 9:14 am > Subject: [CMLHope] Just checking in > > Just wanted to check in with the group. > I miss Millie too. We both owned dachshunds. > We lost Mr. Hans to lymphoma earlier this year which was one of the hardest > things I have ever had to do. > It was the first time in my life that I had the responsibility for ending his > suffering. The vet was just awesome with his gentleness, understanding and > care. Mr. Hans was 12. > It was harder than making funeral arrangements for my mother, she was still > living at the time which makes it easier I suppose. > My mother had a great sense of humor. When we returned to her hospice care > room she woke up and remarked that we were not gone long. > She had a great laugh when I told her that all they wanted to know was paper > or plastic. > We got a new dachshund from a rescue organization. His name is Buster and he > seems to like reading. He has devoured about 5 books from our coffee table > and tears through the pages. I really liked some of those books and he > thought they were quite tasty. Bad Buster. > > For those that are new or do not know my history: > I was dropped on my head when I was a baby and cracked my skull. > When I was in the fourth grade, I rode my bicycle into an intersection and > was hit by a speeding car driven by a 14 year old girl that was being chased > by her brother. She hit me then a tree. The tree died. > I t was a teenager during the late 60s and early 70s. > I lost a kidney to cancer in 99. > Diagnosed with CML on April fools day 2003 with a WBC of 250,000. Started > Gleevec and chemo with apherisis. > Remission until the fall of 2004. > Entered a phase 1 clinical trial for AMN107 which became Tasigna in early > December. My blood counts bottomed out and the drug was withheld for about a > month. > January of 2005 I entered the blast phase and the drug company allowed the > doctors at MDACC to restart the drug. > Had to have blood and platelets infused a number of times before my counts > started coming back up. > While in the hospital I determined that one eye was not as bright as the > other and found out I had cataracts which turned out to not be the cause but > it was an issue with my retinas. > I saw 5 different eye specialist and the best they could come up with was a > leukemic cell intrusion into my eyes. I had radiation treatment on my eyes. > It turned out it was not a leukemic cells issue but wet macular degeneration. > Started Avastin shots in my right eye and by that time had lost my central > vision in my left eye due to the scarring from the leakage. > Vision is now fixed with contact lens correction of 20/400 left and 20/200 > right. I still work, but do not tell anyone I am still driving (much better > than those idiots on their cell phones texting I should add). I should > probably change my nickname from Bubba to Lucky. > > I played a lot of golf earlier this year, I know a blind golfer but I love > the game, until I got severe tendonitis in both arms. It was my own fault for > not warming up and stretching and thinking I am as young as I think and not > as old as I am. I can still break 90 and almost broke 80 on a day the putts > could not miss the hole. beats me. > > My son is home from the Marines after 4 years and achieving the rank of > Sargent. He is now in college part time to get his GPA up so he can transfer > his credits to a four year college. I am hoping U of H, go Cougars. > > I apologize for such a long post but I try to keep up with all of the groups > posts. I have been watching Jeanie's progress and pray for her and all the > group. We both enjoy cruising so we have more than CML in common. I wanted > to visit Millie when I was visiting my brother in law in Pittsburgh but the > time and distance did not work out for us. I would have loved to meet her in > person. She really enjoyed quilting and chatted about the big quilt > convention here in Houston as well as our dogs. > > I have been on Tasigna for almost 12 years now. My doctor says to thank God > and I do. It is great to have a doctor that understands and knows that > miracles do happen and he is a tool of God. > I feel blessed that circumstances occurred that had him take over my > treatment from one of the other doctors on his staff. > > I still do not understand why God has taken such good care of me and kept me > around. I suppose somewhere along the way, somehow, I will have made a > difference. > > Your posts are inspirational with all that each have been through. Having > never been undetectable, I still hope that one day it will be that way for > me. In the meantime, I am working on retiring and have set a date a couple of > years out so I can train a couple more people to do what i do. > > Y'all keep the faith. > Norm > > PS: Dang Marty, didn't your mother ever tell you if you don't stop doing that > you will break your neck. Get well soon > > > -- > -- > [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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > 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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > 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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > 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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > 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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > 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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > 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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com 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 cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
