New Member
Posted 26 January 2012 - 02:58 AM
I'm a 25 year old male living in Michigan and I was diagnosed with CML and prescribed Tasigna earlier this week. Just wanted to make myself familiar with the people here, as it seems that you have all become a closely-knit community. I'm not necessarily looking for any outreach as of yet. I think I'm still in shock that this is happening to me and I'm trying to do research and open up to the idea of this one step at a time.
Charlie
New Member
Posted 26 January 2012 - 03:20 AM
Hi Charlie. I was also just diagnosed on Jan. 5th. I know exactly how you feel. I'm 30.
As overwhelming and difficult as it is right now - I promise it does get better. I just had amazing news yesterday that my white blood count went from 201,000 to 30,000! I've been on Gleevec since January 7th and I'm responding great to the medication and I'm sure you will as well. If not with Tasigna - then there are a few others too! They have come a long way with CML and read Trey's blog as soon as you have time! He has a lot of great information on there. All of the lingo was a bit overwhelming at first, but after a few weeks you start getting the hang of it.
http://treyscml.blogspot.com/ Also, it's good for your family to read. I know it really helped my family instead of googling things and freaking themselves out with outdated information.
New Member
Posted 26 January 2012 - 03:29 AM
No problem. This is a great support group. They are all full of great information!!!
New Member
Posted 26 January 2012 - 05:39 AM
Welcome, Charlie, and sorry you ended up on this island with the rest of us misfit toys. I'm a 45 yo married mom of 3 kids (11, 9 and 9, all girls), and manage a production group of chemists that makes a lot of drug research compounds.
This is a great place to get real world answers from those who have BTDT. Jump in whenever you feel like it. I post only when I have time, which sometimes is only on the weekend. You can also just read, no need to post unless you want to. Treys compilations are very useful reading, and if you don't find what you need there, you can search the CML board archives here and you might find it. Or just post the question.
Lots of ways to use the site. Go with what works for you.
Hope you respond well. The first few months are the hardest. We're here to help if you need it.
Traci
Advanced Member
Posted 26 January 2012 - 07:22 AM
BTDT? (I'm no good with personalized license plates, either.)
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>
Advanced Member
Posted 26 January 2012 - 07:28 AM
Been there done that? I like guessing acronyms!
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 26 January 2012 - 07:35 AM
Welcome Charlie - I'm sorry that you have to be here, but at the same time I'm glad you found us 
I was diagnosed just over 7 months ago, 29yrs - doing ok so far. Please feel free to ask anything you'd like - I had lots of questions (still do!) and people here are lovely and always willing to help out Cheers, Pin.
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 26 January 2012 - 08:10 AM
Hi Charlie,
As Pin said "glad you found us." The first few months are hard but remember everyone here has done it and we can answer any questions you may have. In April will be 10 years for me and in May will be my 30th birthday!
-Steve
Advanced Member
Posted 26 January 2012 - 08:26 AM
BTDT = Bowel Trouble / Dodgy Tummy. As Happycat says, many of us have BTDT
Advanced Member
Posted 26 January 2012 - 11:26 AM
You see Phil, and I thought the BT stood for "Booty Trumpet", oh well.
Welcome Charlie - sorry you have to be here, try to be kind to yourself in the beginning, it's a lot to take in . Over the next few months things should settle a bit and soon you will be more at peace with where you are. Treatment works exceptionally well for most of us, the odds are you will be alright.
New Member
Posted 26 January 2012 - 02:23 PM
Thanks a lot for the comments everyone! It's good to know that there's a community like this out there. I'm just glad that BTDT doesn't mean "Burning and Tingling Down There".
Advanced Member
Posted 26 January 2012 - 02:49 PM
Well played!
New Member
Posted 26 January 2012 - 08:05 PM
Pin is correct, BTDT is been there done that. Gold star to Pin.
Phil and Charlie gets awards for most creative use of acronyms!
Phil, your prize is a nice old-fashioned hot water bottle. Perfect for bad tumtums.
Charlie, you get a bottle of penicillin, just in case you get a case of BTDTs.
Traci
Advanced Member
Posted 26 January 2012 - 09:53 PM
Traci, because of you I have just spent several minutes cleaning off Cherry Coke from my screen after reading your last post!
Advanced Member
Posted 26 January 2012 - 09:53 PM
Welcome Charlie,
You have found a good place.
Pam
Advanced Member
Posted 26 January 2012 - 10:25 PM
Hi Charlie: I hope you do reach out to us, as there is no better way to find out about CML but to talk to others who live with it daily. You will get all types of information through research, but when you have side effects or just need to vent then come here and talk to us. You have so many here who are on different TKI drugs.
I was diagnosed in 1998, so I know what its like to go from old fashioned treatments that were the only thing available back then. Now with all the knowledge of how to treat CML, it has come a long way toward a cure.
Your young, and you will get to reap the rewards of what can be done now for CML.
I hope you join in with all of us. We have some old-timers, and a lot of new people your age for you to talk to.
You do have to adjust to what they told you. Once you get through that stage, the rest will fall into place as you go along. You never forget the day you were told you have CML, but now thats just a memory for me after 13 years.
Susan
Advanced Member
Posted 26 January 2012 - 10:40 PM
Hmmm. . .still working on BTDT. . .can't let Phil win that one! I'll let you know when I come up with a real winner!
Charlie. . .welcome to the site. This is a great place to get information (and often a few laughs). Sorry you had to join the club, but you couldn't meet a better group of people!
Marnie
Advanced Member
Posted 26 January 2012 - 10:47 PM
Welcome, Charlie! As you can see it never hurts to ask questions, with this group you never know where it'll end and we generally have alot of laughs along the way!
TTFN, brb, OMG IOH!
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>
Guest_billronm_*
Posted 26 January 2012 - 11:36 PM
Hi Charlie,
Welcome to our site of misfits. We all know how overwhelmed you are right now but trust us we'll help you all the way! I'm a cml veteran 4 and a half years. Don't mind Pam she spits all over everything. She probably drools more than me too. Sincerely Billie
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