Yes Beth, I always think of Sprycel as killing those awful cancer cells, and it has put me in remission, so I've got a lot to be thankful for. I am so sorry for all you losses; I pray for your quick recovery in your surgeries, and I know you are a fighter, so fight on sweet girl. Blessings, Jeanie<2 In a message dated 12/14/2013 1:58:17 A.M. Eastern Standard Time, [email protected] writes:
Dear Millie, Thank you for your kind words. I am so glad your ceramics are down..what a lovely reminder of your daughter....Just an FYI, I am single Millie. My fiance was killed by a drunk driver a long time ago...I was looking forward to adopting a child, then my dad got sick, then I was in an accident and hurt my back, then I got diagnosed with CML, then my mom got sick....so I do understand loss, and feel for you and anyone else grieving during the holidays and beyond. I treasure all the love and support that is in my life, my friends, small extended family..and trust that once I am through this final surgery, the fourth in two years.I can focus back on bringing love and a partner into my life......that mountain is sometimes quite tall stretched before us, but as Richard said,....we get up, and appreciate every day...and give thanks for the meds that have saved all our lives. When ponatinib got taken off trial...I have found myself actually smiling and being joyful and thankful every night when I take my sprycel. It may sound weird, but I find it a comforting ritual, welcoming it into my body so it can do it's job. I have found, and this may help Mar, that visualization, guided imagery at night before I go to bed has been profoundly helpful and I believe supportive of remission. I listen to Belleruth Naparstek. A Medication to Help You Fight Cancer. It has guided imagery and affirmatioins to say to your body.,..( she actually says them for you )...there are a few others as well....focusing on illness and wholeness, the spirit rising, healing etc...I'd be happy to share more if anyone is interested but Belleruth is great. To bed I go...I do have the insomnia part...take benadryl to try to counter it..wish everyone a good weekend ahead! Beth -----Original Message----- From: C.M. Houtz <[email protected]> To: cmlhope <[email protected]> Sent: Fri, Dec 13, 2013 9:05 pm Subject: Re: [CMLHope] Re: Getting Results Hi Beth, You have gone through so much, and I keep you in my prayers always. I know that you keep fighting hard to overcome all of the things you've had to deal with. Thank God you have such a good husband and support system in place as that's half of the battle. When are you going to have more surgery? Just wondering. Are you ready for Christmas? I never am until the last minute, and then I may not be ready, but it's going to be here anyway. I am working on finishing up the decorations. I told my son that we spent so much time putting them up that I'm not going to take them down any time soon. I love looking at them and they make me happy, so I'll keep them up until late January..probably. Chris, my son, has always collected nutcrackers, and so he has them out. I don't know that I'll put them away this year. There are times when I just leave them out. There is more in the Attic, so tomorrow he'll bring them down and I can start on the kitchen and dining area and get that done. I will repack things and clearly mark them this year so that it will make our lives easier in the coming years. My daughter and I use to do ceramics and have beautiful reminders of our time together before she passed. This is the first year I've been able to get them down and enjoy them. You take care, my friend, and let me know how you're doing. I will keep you in my prayers and hopefully your numbers will be fine on your blood work. Talk to you soon. Many hugs and Happy Holidays, Millie ----- Original Message ----- From: [email protected]_ (mailto:[email protected]) To: [email protected]_ (mailto:[email protected]) Sent: Friday, December 13, 2013 9:46 PM Subject: Re: [CMLHope] Re: Getting Results Dear Mar, I hope you feel well held here..aren't these folks great! I love them all., anyway, I was reading...the beginning really can be very trying...and you are having a definate rough time, no doubt. You may already know this, but just wanted to share it in case the doc didn't mention it, I learned this from other warriors....when your body is killing cancer cells, and our cancer is in our bone marrow, it's common for people to have bone pain, sometimes very intense. While it can be a side effect of the medicine itself, it can also be a temporary issue that improves with time, as there are fewer and fewer detectable cancer cells..hopefully one day none showing!!! My bone pain was bad at first, but I have none now....except for when I had to go off meds for a long time for a surgery and my numbers went up...when I went back on the sprycel initially I had that pain all over again..but it did get better. Again, I know that that can be a side effect of the medication itself in some people. I am hoping for you that over time, it is not an issue. I will keep my fingers crossed for you as I do for all of us here... did blood work today at U of C. Everybody please send good energy for a great outcome. I have to have another back surgery..healing from cervical surgery pretty well now..in PT.. have to go off sprycel again for a time to do this next surgery ......Four major surgeries in two years...on and off these meds...like Tom said...stay positive, try to stay strong and move your body in some way., Best, Beth -----Original Message----- From: TEDBDD <[email protected]_ (mailto:[email protected]) > To: cmlhope <[email protected]_ (mailto:[email protected]) > Sent: Fri, Dec 13, 2013 8:40 am Subject: Re: [CMLHope] Re: Getting Results Mar....welcome to the group! I, too am on 20mg of Sprycel (disatinib) after difficulties on Tasigna, Gleevec and higher doses of Sprycel. My journey is outlined in the notes at the bottom of this email. I would recommend you establishing the same...it is really helpful in letting others know what your journey has been and doctors love it if you have to change physicians. Each person seems to react a little differently to these Tyrosine Kinease Inhibitors...I find that exercise and a positive attitude are the best tools to deal with the speed bumps we have on our unique CML journeys. Collectively, we are so fortunate to have these amazing TKI drugs available to us...for we probably wouldn't be around without them! All the best...and Dave is right...you can get a lot of info from this group! Tom in KY Tom Dunham, BD: 8/1941 Updated:12-13-13 Zavie Miller's Zero Club #1292 DX CML 12-23-2008 MDA Protocol: Tasigna-400mg; 2xday-1/09 On Flecainide for AF...still had frequent episodes Q PCR bone@ MDA…0.17 on 7/09 Acute Pancreatitis-7/5/09 Stopped Tasigna-7/13/09 Q PCRU blood @ Baptist…undetected-7-29-09 ! Started Gleevec-400mg/day-7/31/09 Developed rash ~ 8/19/09 Rash treated with Steroids..improvement Rash worsens~9/22/09 Stopped Gleevec-9/28/09 Restarted Gleevec @300mg/day-10/8/09 Stopped Gleevec-10/13/09-toxic rash\ AF returned infrequently Q PCR bone-0.05 Started Sprycel @ 100mg/day-10/20/09 Some AF...increased FLecainde..1, 2x/day Q PCR bone @ MDA..0.07 Stopped Alcohol…no AF, ½ Flecainide 2x/day Q PCR Blood @ Baptist…Non Detectible-12-13-10 Q PCR Bone @ MDA..0.01--2-25-11 Q PCR Blood @ Baptist…Undetectible-5-19-11 Reduced Flecainide to 1/2 per day Pleural and pericardial Effusion: stopped Sprycel-12-6-'11 Prednisone 50mg /day to combat PE; 12/14/'11 gradual reduction Pleural Effusion clear 12-21-11 Started Sprycel 70mg/day..12-23-11 QPR bone @ MDA.. <0.01...2-16-12 Started Sprycel 50mg/day..3-10-12 Chest pains...slightly more PL Eff 4-19-12 Steroid Dose pack to alleaviate..still on 50mgs Change to 20 mgs/day Sprycel..4-26-12 Chest clear, effusion gone-5-14-12 Q-PCR Blood @ Baptist-Undetectible-6-13-12 Neuropathy moving up legs, some weakness noted--12 Q-PCR Blood @ MDA..<0.01…8-21-12 Q-PCR Bone @ MDA…<0.01….3-5-13 Q-PCR Blood @ Baptist….Undetectible..6-19-13 Q-PCR Blood @ MDA...Undetectible...9-19-13 In a message dated 12/13/2013 6:34:37 A.M. Eastern Standard Time, [email protected]_ (mailto:[email protected]) writes: Hi Mar, I've been with this group of people starting I think back in 2001. Found out I had CML two weeks before Xmas of 1998. Was put on Interferon for 3 months which almost killed me. A couple of months later my Doctor in Chicago, Northwestern University put me in a study with 7 others people from Chicago land. I was the only one from Northwest Indiana. Their were 200 people from the US in this study. Novartis was head of the research of this study. This was before Gleevec was approved by the FDA. Within 6 months I was in remission and I've been on STI571 (Gleevec) all these years. Started on Jan. 10th of 2000. You will find out that in this CML group you will get more information from our members and their care takers that you won't get from most Doctors. If at any time you have any questions this is the place to get the real facts. Good luck to you and welcome to the group. Dave (Greenie) Greenberg In a message dated 12/13/2013 2:15:03 A.M. Eastern Standard Time, [email protected]_ (mailto:[email protected]) writes: Thank you everyone for responding. Feels less like you are on an isolated island... there are no support groups in my area... so, I do appreciate your emails with encouragement and support. I was glad to hear there are other medications. I gather this is a long journey... to figure out which drug and at what level... not one that can be answered quickly. I find the side effects difficult to deal with as I continue to work. Not sure if it is possible to work while all of this is being figured out. Do most people continue working? Richard, diagnosed in 2003 and there are still mountains? I guess I am expecting to much to soon. Beth, My hematologist specialist didn't put me on the 100mg I was on at the beginning because of the first toxicity. I have been on 20 mg which doesn't seem to be much but, I can't believe my body doesn't even like the 20 mg... I just learned today I am back into the toxicity and cytopenias. I have side effects to Diasanatib I didn't have on the Gleevec as well. I found the 100 mg gave me insomnia, medically induced depression and rash... I only have the rash at 20mg. But, seem to have a lot of bone pain lately. I am giving you all a big hug and thank you for your emails as it is nice to know there are people who understand much more than I do (being such a newbie). I look forward to hearing from all and learning from you. I hope all of you are doing well in your own journey :) Ididn't know that 1and 8 meant life.. will post this in front of me for inspiration! Cheers, Mar On Thursday, December 12, 2013 8:25:25 PM UTC-8, Richard H wrote: Welcome to this group. Almost every one has had problems adjusting to the meds. Try your best to remain positive as that seems to help most of us. We are here to listen and in return we give back what we have learned to get over this little hill at this moment. I was diagnosed in 2003 and the mountain I have to climb is still on the horizon. Richard H. On Thursday, December 12, 2013 8:42:51 AM UTC-6, Mar wrote: Hi, I am new to the group. I was diagnosed January 10 2013. Since then I have been on Gleevec, failed (due to toxicity twice) and was switched to Dasatinib which I have toxicity to as well and had to stop taking the medication. Each time I have had the toxicity my blood levels are so low that it takes 4-5 weeks for them (neutrophils, platelets and wbc's) to go back to even the lower range of normal. Thus, I have not yet had any cytogenic or molecular recovery.. if anything, my last result was going backward. I have another appointment on December 19th to see if there is any recovery at all... I am keeping my fingers crossed. It has been quite the roller coaster... I am not sure if others have had the same type of roller coaster in the first year. I just ran into this group tonight and I appreciated reading others emails about their recovery... thank- you.. Hope to be able to post one of my own recovery stories one of these days. Mar -- -- [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]_ (mailto:[email protected]) To unsubscribe from this group, send email to [email protected]_ (mailto:[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]) . 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