New Member
Posted 14 February 2012 - 12:28 PM
Good Afternoon,
I was diagnosed on 11/30/11 with CML. I wanted to say thanks to all on this board for your information and sharing your experience. I'm on Sprycel 100mg my WBC is in the normal range. My twice a week test are now down to 30 days. Thanks again everyone.
Advanced Member
Posted 14 February 2012 - 12:36 PM
Sounds like you are off to a good start.
Best of luck
New Member
Posted 14 February 2012 - 02:03 PM
Thanks ! I'm at CHR with my next appointment on March 2nd.
New Member
Posted 14 February 2012 - 03:00 PM
Glad to hear that everything is going so well -- don't forget to celebrate! I second your thanks to all of the people on this board. My stress load would be huge without all of the support and good information!
Jack
Advanced Member
Posted 14 February 2012 - 07:59 PM
Hear, hear, Jack. Three years ago I was a basket case and now I've got all my BIFs (Best Imaginary Friends) to see me through the hard days!
For those who came along after: http://community.lls...age/80126#80126
This really originated with Phil B, but I can't find the original reference anymore.
Pat
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Member
Posted 14 February 2012 - 08:42 PM
Thanks for the link Pat! I had totally forgotten about that post!
Guest_billronm_*
Posted 14 February 2012 - 09:53 PM
Dear leejaytn
Thank you for your kind words,and welcome to our site. We're so glad you found us. Feel free to ask anything! And if you have a question that nobody can answer right away, guarenteed. you'll get an answer in no time. We have all been busy with helping all the newcomers. But be prepared for a good belly laugh. Sometimes someone will say something silly then we all get in on it. Sincerely Billie
ps do you have a hole in your cheek? Why only me
New Member
Posted 15 February 2012 - 03:56 PM
Thanks Billie for the warm welcome. No whole in the cheek as of yet.
Advanced Member
Posted 15 February 2012 - 04:16 PM
Awesome you are doing well! It is great to hear good news.
Advanced Member
Posted 15 February 2012 - 04:18 PM
Billie,
You are definitely an enigma. Although I retain the award for horn growing to date. Hope you are feeling better!
Pam
New Member
Posted 15 February 2012 - 07:39 PM
Hello, Lee,
Welcome to the group. You poor thing, not only do you have cancer, but now you have to put up with us!
Just curious - are you from Tennessee? Noticed the "tn" in your name, wondered if there was a connection. I love to play "decipher that username". Totally missed CallMeLucky's though until he clued me in.
Traci
New Member
Posted 15 February 2012 - 09:04 PM
Hi Traci,
Thanks for the welcome. I am from Tennessee(born in Memphis) but lived most of my adult life in the Nashville area. We moved to Columbus Ohio last June. Its been a challenge since most of my support system is in Tennessee. However, OSU Medical Center (the James Center) has been great in my treatment. I do miss Tennessee.
New Member
Posted 16 February 2012 - 05:12 AM
Lee,
My BIL got a new job in TN a few years ago. They haven't moved from IN yet (can't sell the house), so he works from IN and then commutes down a few times a month. Anyway, we took our summer vacation down there, Gatlinburg area. Absolutely beautiful! Loved the views! Haven't seen Memphis or Nashville areas, but if they're like the Smokies, I can see why you would miss TN! I would think OH must seem awfully flat in comparison. And then there's that whole winter and snow business.
Traci
Advanced Member
Posted 16 February 2012 - 05:24 AM
Hi leejay, I'm right there with you - I don't know how I would be coping if I didn't have the support and resources that are on this board. I hope you continue to improve!
Happycat - is your username named after your (happy) cat? 
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
New Member
Posted 16 February 2012 - 10:25 PM
Traci,
West TN is very similar to Columbus (flat). However the farther east you go in TN the more hills you encounter. I still go down to East TN and Backpack. As a matter of fact, I was down there 2 months prior of my DX and did a hike. I love the outdoors. Little did I know I would be getting the "wonderfull" new of CML two months later. I didn't realize how tired I really was until I started treatment.
My wife commuted for a few months prior to our move to Columbus. It wasn't easy. We still have our home in the Nashville area. We are have tenants in it now. I like Indianapolis, our Customer Service Dept is located there.
New Member
Posted 17 February 2012 - 04:57 AM
Pin,
Happycat was our nickname for our now deceased cat Gus. He was the original Happycat. We even had a Happycat Song we would sing to him. (He probably nicknamed us the Nuttyhumans.)
Unfortunately, I don't have any good digipics of Gus, so I have to make do with a pic of Cleo, the cat we got after Gus. She's a happy cat, too, very friendly, but Gus will always be the original Happycat.
If I used our other cat, Breenie, I'd have to be called Scaredycat, or maybe Spooky. She only comes out after the girls have gone to bed, squeaks like a mouse when you pick her up, if you can catch her that is, and then growls the whole time you try to pet her. Very different personality! The only time she voluntarily comes out for a petting is when you are sitting on the toilet. She must think, rightly, that you can't get up and chase her with your pants down around your ankles, lol!
Traci
Advanced Member
Posted 17 February 2012 - 10:14 PM
How cute is that, I like your cat names
Cats are such funny creatures - My cat is sick at the moment, his name is Pinichio - which is where my name comes from
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
Advanced Member
Posted 17 February 2012 - 11:38 PM
Hi: I am a little late in welcoming you to our little group. Glad your doing good on the Sprycel. I have been on Gleevec for 11 years, and doing good. Its amazing how these TKI drugs have helped so many. Please keep in touch with your progress, as it will help others who might just be diagnosed and starting on Sprycel.
Just ask anything at anytime. Somebody is always there with a answer. Glad you joined us.
Susan
New Member
Posted 18 February 2012 - 04:02 PM
Thanks Susan for the welcome. And Congrats on your success with Gleevec
0 members, 1 guests, 0 anonymous users
