Greenie, you did win the lottery and a whole lot more! 15 going on 16 years later......makes me cry....and very hopeful...I was diagnosed in my 40's so want to be here for the next 50 years in good health...... !!! cheers to all of us warriors!! Beth
-----Original Message----- From: Myvety2k via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Wed, Dec 30, 2015 8:05 pm Subject: Re: [CMLHope] Re: Merry Christmas and happy Hilidays Hang in Beth, I never was lucky enough to talk to Dr. Druker and was in the 2nd study with Novartis at Northwestern in Chicago. Their were 200 people in the study and Northwestern had 8 people out of the 200. I was the only one from Northwest Indiana about 40 min. away. I started STI571 the first week in January 2000 and have been on it all these years. Started at 400mg but I received the Gleevec rash and they had no idea why so they dropped me down to 300 mg and I've been on that dose all these years. So I guess I can say I won the Lotto, better then money. greenie In a message dated 12/30/2015 7:42:38 P.M. Eastern Standard Time, [email protected] writes: yeah Greenie!!!! I am back on sprycel for now starting tomorrow. My doc is thinking ponatinib, try at 15 mgs in a couple of months. Will see what Dr. Druker says in February...then decide...so...for now, keeping my faith and chin up...at least trying to ring in the new year hopeful and grateful. I am here!!! and so are all of you....best to all of you. B -----Original Message----- From: Myvety2k via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Wed, Dec 30, 2015 2:34 pm Subject: Re: [CMLHope] Re: Merry Christmas and happy Hilidays Darn, I think I'm siting on my brains I forgot to say my test results came back last week and I cancer free. Their was one time about 7 years ago that I stopped for 26 days without taking my Gleevec and cancer cells showed back up in my blood so it's pills for life unless they come up with a cure. But theirs so much money to be made I'm not going to hold my breath waiting. greenie In a message dated 12/30/2015 3:21:39 P.M. Eastern Standard Time, [email protected] writes: Beth, forgot to add that my son lives in Chicago and I was born on the South side. South Shore Hosp. back in 1939. greenie In a message dated 12/28/2015 4:02:08 P.M. Eastern Standard Time, [email protected] writes: HI All. And a very happy New Year to everyone. I miss you all. Richard, I am so happy you can bring your wife home! And Susan, I will keep you and Jeannie and Marty and Richard and Greenie and everyone else whose names I cannot think of this moment ( chemo brain:) ), in my prayers... I had a rough ride...did not make it to Florida, stuck with a kidney infection and kidney stone in Chicago, then, after ultra sounds and two MRI"s, three trips to the hospital..of course I caught something there..had the flu for the last week plus...so, finally starting to feel better...sat down and I have another 1100 emails to sift through since the last time I was online..... so sad to have missed you and your wife Greenie, but hope to get down there this winter some time...in the mean time..I hope you and your sweetie are taking good care and enjoying nice weather...Chicago has been so mild up until now...now ice storm, and then 4-7 inches of snow tomorrow on top of it....I am still off any work until next Monday so I hope to regroup...and get better this week... I think of all of you so often and hope this is a good health year for all of us. I have been of sprycel for 6 weeks now, but Bcr Abl showed it's return at 5 weeks off...so on Friday I restart. It has definitely been good for my body and soul, the break, working on getting the cpk down with steroids in the hope that I can build back muscle if we can just get it down and keep it down....still have a lot of pain in my body..but other than that..no complaints....happy to be here.. my best wishes, 18's and big hugs all around. You all are the best, my CML family. love, Beth -----Original Message----- From: 'Susan Zimmerman' via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Mon, Dec 28, 2015 1:37 pm Subject: Re: [CMLHope] Re: Merry Christmas and happy Hilidays Merry Christmas and Happy New Year to all of you, ALL!!! This was the best Christmas I can remember, as both my adult children and their families were in attendance. It made the celebration wonderful with a 7 and a 4 yr old (grandkids). I will be recuperating for a few days since they left yesterday. Both my husband and I hit the sheets for a nap the minute they left! Wouldn't trade it for the world. Was not sure if I had stroke symptoms or a sugar overload on Saturday after a big party. Double vision and near-vomiting for over three hours. Took off my mono contacts after the LOOONNG ride home and in half an hour was fine. Ten days before that I had doubled my dose of bosulif. Now not sure whether to keep on two a day or cut back to one a day again. Stroke is not worth the medicine. I'll test it again and see.....prayers appreciated. 18's and Enjoy every day, Susan F. Zimmerman -----Original Message----- From: Richard H <[email protected]> To: CMLHope <[email protected]> Cc: icandoallttc <[email protected]> Sent: Sat, Dec 26, 2015 12:17 am Subject: [CMLHope] Re: Merry Christmas and happy Hilidays Merry Christmas and happy holidays back your way and to all. Santa was the BEST EVER. I was able to bring my wife HOME. Lots of in home care and therapy wi;l start next week. On Friday, December 25, 2015 at 2:44:03 PM UTC-6, Icandoallttc wrote: Merry Christmas and happy Holidays to all. I hope everyone is good and that Santa was good to you. My Motto: Faith and Pills Jeanie 🐟🐟18,s Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center -- -- [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]. 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