Had my PCR test done thursday, the 7th, my DR. just called with results----she told me I am CMR!!!!!!!!!! I have been on tasigna since Feb. 1st. I just wanted to share with all of the people on this board-----my life line since being diagnosed!!!!!!!! I have learned more about CML from all of you sharing your life and when first diagnosed I didn't think I would stop crying---and the anxiety---it took over for the first 2 months, but the kidness from everyone here made me look at life with CML alot different -- thanks to everyone. Now--- I am looking forward to my results on paper, she said they are in the mail!!!! Time to call my blood family--wanted to share with my CML family first!!!!!!!!!! Prayers to all, granny d
Posted 11 July 2011 - 05:02 PM
Congratulations!! I could just hear your excitement in your writing. I know how beautiful that feeling is. So glad you let us know right away.
You will be getting a lot of responses, as everyone shares in your joy. This is so good when our newcomers see what is being done for CML , and where it can take you. Have a great time celebrating with all your family.
Posted 11 July 2011 - 05:51 PM
Congratulations! How kind of you to think of us first. While I am sure your family will be over the moon about the news. We here will actually comprehend EXACTLY what it means and how amazing it is to hear those words from the onc's mouth!
So glad that the board has helped with your anxiety. I think that that is what this board does best. We are never alone if we have found this place and the wonderful people who populate it!
Posted 11 July 2011 - 07:25 PM
Go, grannyd, go! Well done!
Be alert, but not overly concerned.
• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week
• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)
• Oct. 28, 2008: CML confirmed, start Gleevec 400mg
• Oct. 31, 2008: sent home when WBC reached 121k
• On/off, reduced dose Gleevec for 7 months
• April 2009: Started Sprycel 100mg
• Sept. 2009: PCRU 0.000
• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)
• Currently: still steady PCRU, testing every 6 months 🤗
— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!
Posted 11 July 2011 - 08:34 PM
I should have read more posts. I just wrote you one on the post before this one.I can't remember the name but I think it was your post. maybe? I'm so happy for you. Love Billie
Posted 11 July 2011 - 08:37 PM
Yay! Congratulations! It must be a wonderful feeling
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
Posted 12 July 2011 - 10:29 AM
Woo! That's great, congrats! I've been on Tasigna since Feb 9th, I hope to be right behind you
Posted 12 July 2011 - 11:06 AM
Way to go, grannyd! You know, we could be considered "blood" relatives, too!
"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>
Posted 12 July 2011 - 11:15 AM
Congratulations and hope you screamed it out good and loud!
Posted 12 July 2011 - 11:16 AM
I didn't realise anyone had a camera running when Trey pulled me out of that hat!
Posted 12 July 2011 - 12:28 PM
Oh Granny, good for you, I'm so happy to hear this.
May it be the first of many CMR results in your future.
Posted 12 July 2011 - 01:29 PM
Beware, Phil.. . The camera is everywhere!! I did think that you looked awfully cute in the bunny suit, but who exactly were you wiggling your little tail at, anyway??
P.S. Very, very happy and relieved about your test results. I have an even better Happy Dance video that I would post for you, but I think I've overdone the You Tube thing and need to back off for awhile. And it sounds like Pat needs to recuperate. I wouldn't want to traumatize her any more. Instead, I'll put on my spangly tights, grab a fizzy drink, and do a happy dance in your honor in front of my computer (with the web cam turned OFF).
Posted 12 July 2011 - 06:09 PM
Thanks to everyone for the kind words!!! Such a wonderful group of "friends"!!! I did put my Dr. on speaker phone, my husband was close by & I wanted him to listen in case I missed anything she said!! Glad I did, I had to ask him if I ""heard her right"""!!! He was as excited as I was!!!! Thanks again to everyone & prayers to all--granny d
Posted 13 July 2011 - 07:31 AM
Congratulations!!! Great news!
DX 5-2010 Started normal hydra then Gleevec for 9 months stopped working
Tasigna after 5 pills pancreatis numbers jumped up quickly
Started Sprycel 100, 8-2010 for a 3 years went down to 50 mg numbers at one point really jumped up quickly
currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then
After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now
numbers lower then ever go figure I've never been this low of a number
last 2 tests .0686 and .0181 !!
1 user(s) are reading this topic
0 members, 1 guests, 0 anonymous users