Thank you so much and sorry for waiting so long to answer. As you know I have been suffering with pain under my right rib for years now. In 2009 I was switched from gleevec to tasing a. The pain under my rib increased and my onc At that time gave me tramadol. It seemed to help for a while. The. I went out of remission and had to be hospitalized while they cleansed my blood. I kept asking my onc to put me on spyrcel but he wasn’t familiar with the drug and kept refusing. A nurse that had worked at Moffitt finally convinced him to do so. About this time I decided I needed to go to Moffitt. So after getting my sprycel I got an appointment with Dr Balducci at Moffitt. Sprycel put me in remission for 4 years and then developed a mutant. The newest thing out was Ponatinib and he put me in that. It put me back in remission in 3 Months. But on this drug my right side pain became unbearable and my onc put me on oxycodone. I had every test available if they ant find cause of the pain so my only choice is to treat the pain. Then the pain in my right pinky started and went to my elbow waking me up at night in terrible pain. Sometimes burning in my feet and pain also. Dr Balducci has retired and I now have his colleague Dr Martine Extermann but only met with her once. I am just trying to work through this pain and keep active when I can. Faith and pills is my motto. I will be 80 soon. My daughter is giving me a pool party with all family. 5 children 14 grandchildren and 15 great grandchildren. I am so blessed. I lost my hubby of 42 years in 1998 from diabetes and heart problems. Thanks for uplifting me and keep up the good work. I pray for your body to heal. Blessing
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 New Doctor--Dr Martine Extramine 0 CBL. ABL > On Mar 23, 2018, at 12:45 AM, bkbarney via CMLHope <cmlhope@googlegroups.com> > wrote: > > Dear Jeanie, > > So good to hear from you. I know you struggle with lots of different > things...and yet carry on...and stay strong with your faith and friends > etc...80 years young....sounds good to me.. I am in my mid fifties so need to > work, so praying I will be able to do so for a long time to come. My answer > to your question is a bit complicated. Spraining your ankle, that REALLY can > hurt... That type of pain my docs would recommend arnica spray or/ and some > advil or similar anti inflammatory..your bones and muscles are two different > things..so if both are waking you up at night...I would ask the doc about > that..does massage help??? is it like a cramp or a deep ache? Ponatinib is > known for some specific side effects...but it could be arthritis > etc....remember to stay really hydrated as that can cause real muscle > cramping at night... > > My situation is that the TKI's created a pretty immediate elevation in my CPK > levels..a test that measures muscle breakdown...so the sprycel does a great > job for me but also inhibits other processes in my particular case, ( as we > are all different and the drugs seem to affect us all quite differently) so > my muscles have a ahrd time repairing and when I am active for a period of > time, my body starts to hurt all over..muscularly, I can start to feel > weakened and in a lot of pain. Good rest, some aspirin or upon rarer > occasion, tramadol seems to help, so does therapeutic massage when I can > afford it as well as being in the warm water pool...very soothing and > relaxing to the muscles....hate the chlorine, but love the feeling!! > > My love and 18's to all.....spring is here,, the weather just needs to wake > up to that fact! > > Write soon, > > Beth > > -----Original Message----- > From: 'Jeanie' via CMLHope <cmlhope@googlegroups.com> > To: cmlhope <cmlhope@googlegroups.com> > Sent: Sun, Mar 11, 2018 5:52 am > Subject: [CMLHope] Beth muscle issues > > > Hi sweet Beth > So glad to hear from you and get our uplifts we so badly need. > I sprained my muscle in the top part of my right leg and it really hurt. > Then my bones a muscles started to wake me up at night. I get up and massage > them. I was wondering if you are under a doctors care for the muscles and > what they told you to do for pain and all. > I take Ponatinib and have for 3 years this Jan. > I limped for about a week but it's gradually getting better I don't think I > could work but I am 80 years young in May. > Looking forward to your advice. > I still walk and do some house work and gardening. > Love you so very much. > Jeanie > My Motto: > Faith and Pills > With Love > \uD83D\uDC2018's > Dx 1/2004 CML Leukemia > Started Gleevec 2/2004 > Started Tasigna 9/2009 > Started Sprycel 11/2009 > Started Ponatinib 1/ 2015 > New Doctor--Dr Martine Extramine > 0 CBL. ABL > > On Mar 10, 2018, at 8:41 PM, bkbarney via CMLHope <cmlhope@googlegroups.com> > wrote: > > Dear Marty, Jeanie, Greenie, Susan, SuzieQ, Richard, Kristen and everyone > else who am forgetting because of my chemo brain. I am here, think about > everyone often...had a bad flu season...really starting to feel better only > now....Wow17 years for both Kristen and Jeanie!! Congrats...I just hit 8 > years on February 12th....Time marches on..so glad to be here with all of > you... > > My latest blood work came back undetectable...so I was very happy to see > that....still navigating the severe muscle fatigue, deterioration issues, and > some heart sprycel related stuff..but I am truly blessed to be here...and to > still be able to work.... > > love to all of you out there.....the glass is half full in Chicago! > > 18's > Beth > > > -----Original Message----- > From: 'Susan Zimmerman' via CMLHope <cmlhope@googlegroups.com> > To: wa2yyx <wa2...@gmail.com>; cmlhope <cmlhope@googlegroups.com> > Sent: Sat, Mar 10, 2018 4:18 pm > Subject: Re: [CMLHope] Digest for cmlhope@googlegroups.com - 1 update in 1 > topic > > For me it's been 13 years..... > 18's, > Susan F. Zimmerman > On Saturday, March 10, 2018 Marty Gartenberg <wa2...@gmail.com> wrote: > Hi Jeanie, > > Wow 17 years! Good for you as well. My congratulates to you. Hey are you > catching up with me? 30 years for me. > Time fly's by when your riding on the Marquis Express. Okay now lets all sing > along all of you people out > there...`\uD83D\uDE4E\uD83D\uDE46\uD83D\uDC81\uD83D\uDE4B\uD83D\uDE47\uD83D\uDE4C\uD83D\uDEB6\uD83C\uDFC3\uD83D\uDC83\uD83D\uDC6B\uD83D\uDC6C\uD83D\uDC6D\uD83D\uDC8F\uD83D\uDC91\uD83D\uDC6A > > 18's, > > Marty > > On Sat, Mar 10, 2018 at 5:00 PM, 'Jeanie' via CMLHope > <cmlhope@googlegroups.com> wrote: > I am celebrating 17 years also. I'm on my 4 tki: Ponatinib. Been a rough > ride. How bout you! > > My Motto: > Faith and Pills > With Love > \uD83D\uDC2018's > Dx 1/2004 CML Leukemia > Started Gleevec 2/2004 > Started Tasigna 9/2009 > Started Sprycel 11/2009 > Started Ponatinib 1/ 2015 > New Doctor--Dr Martine Extramine > 0 CBL. ABL > > On Mar 10, 2018, at 2:10 PM, Kristin Lieberman <kristinlieber...@gmail.com> > wrote: > > I’m here. Celebrating my 17th year as a CML survivor! > > Kristin > > Sent from my iPhone > > On Mar 10, 2018, at 2:11 AM, cmlhope@googlegroups.com wrote: > > cmlhope@googlegroups.com Google Groups > Topic digest > View all topics > Hello - 1 Update > Hello > Marty Gartenberg <wa2...@gmail.com>: Mar 09 04:12PM -0500 > > Hello, hello... Is anyone out there? > > 18's, > > Marty > Back to top > You received this digest because you're subscribed to updates for this group. > You can change your settings on the group membership page. > To unsubscribe from this group and stop receiving emails from it send an > email to cmlhope+unsubscr...@googlegroups.com. > -- > -- > [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 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