Posted 28 June 2015 - 09:41 PM
I've gone through the ups and downs, the panic, fear, and the joy of good results. I switched drugs when I felt my quality of life wasn't good enough on first drug. I played with dose and got my hand slapped for it. Today I am PCRU and side effects are very manageable; some have gone away and others I've learned to live with.
In the last five years I've accomplished a lot; I got my MBA, I co-authored a book, I switched jobs, I've travelled to Europe, I've been to Disney a couple of times with kids and taken a few other vacations. I've had some health scares, lost some loved ones, spent a week in hospital with pneumonia, and switched oncs when I realized my first one wasn't a good fit for me in the long term.
I think I'm a different person than I would have been had I not gotten this illness. I'm certainly not happy I got it but I think I have learned things along the way and come away with some positives despite the big negative. I've made some friends I never would have had, I've learned to be more empathetic towards others. I have times when I have heavy anxiety but I don't get upset about small stuff anymore. I may worry a bit more but I am much less angry.
A lot of this is just maturity, today I am 42, I was diagnosed at 37.
Each day my kids get older and I feel good about that. I am living my life in spite of my illness and I've managed to have some good times along the way.
I recognize that without the miracle of TKI drugs I would likely be gone at this point so going forward is truly a gift. I am forever grateful to doctors like Dr Druker who have made it possible to live with this disease.
It's not a perfect life, but it's the one I've been given and in the aggregate I am fortunate. So I will press on and look forward to making the most of the years ahead of me.
Thank you all for being there with me on this trip, you've made it much more bearable and I appreciate all of you.
Much love to all
Posted 29 June 2015 - 06:15 AM
Congratulations, Lucky! And, thanks for the bits of wisdom. It's always good to take stock of where we could be and realize how fortunate we are to be where we are today.
"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 29 June 2015 - 08:20 AM
Posted 29 June 2015 - 09:26 AM
Congratulations Lucky - good to read a summary of your ups and downs. You have achieved loads too!
Posted 29 June 2015 - 10:40 AM
have been here for me when I needed to be grounded.
You speak from your heart and I know that makes you
an even better father and husband.
Posted 29 June 2015 - 12:26 PM
Congrats on the 5 years and not letting CML slow you down.
DX 1/14; Sprycel 100 Mg, liver toxicity; Sprycel 80 Mg; down to 50 Mg for 5 months. Numbers going up. Back to 80 Mg 10/16 (with 50s slipped in to use up) BCR/ABL: .0047 12/15; .0302 4/16; .0528 8/16; .084 10/16; .045, 1/17 back up on 80 mg Sprycel; .006, 3/17; .016, 7/17; Shingles 8/17
Posted 30 June 2015 - 08:52 AM
Congrats. It really is amazing to look inside and realize how one has changed. It's been a pleasure getting to "know" you these past few years.
Posted 30 June 2015 - 09:21 PM
Posted 01 July 2015 - 07:51 PM
Congratulations, Lucky. You embody the definition of living fully, despite cml..
Dx April 2013, FISH 62, BMB not enough for PCR test; put on Gleevec 400;
August 2013, FISH 8.7;
Oct 2013, FISH 5.6
Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;
Feb, 2014 PCR 6.8
May,2014 PCR .149
Aug, 2014 PCR .015
Nov. 2014 PCRU
March, 2016 went down to 40mg Sprycel
Oct. 2016 stopped Sprycel for a couple weeks due to concern about shortness of breath. Echo showed mild PAH.
Nov 1 2016 resumed Sprycel 20 mg daily
Dec 2016 PCRU
March 2017 PCR 0.020
May 2017 PCRU
Sept 2017 PCRU
Dec 2017 PCRU
Posted 04 July 2015 - 03:10 PM
Here's to 5 more!
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Posted 04 July 2015 - 04:42 PM
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
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