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Year 3 TFR

Started by pammartin , Mar 18 2017 09:59 AM

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4 replies to this topic

#1 pammartin

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LocationPennsylvania

Posted 18 March 2017 - 09:59 AM

Attached are my labs from the recent visit to West Penn. There is nothing very remarkable except the sodium level, I eat very little salt.

The actual date of my appointment marked my 3rd year TFR.

Although the choice to stop taking the TKI was made because Sprycel caused pulmonary hypertension, I will never advocate or suggest another stop treatment unless their oncologist is agreeable. If you wish a second opinion, please seek it out.

There are still many unknown factors concerning this disease. Be your own advocate but make sure your treatment team agrees with your choices. I was approximately two and a half years undetectable when my oncologist stopped Sprycel.

One size does not fit all with this disease, please make decisions with your treatment team.

Pam

CBC March 2017.jpg 147.99KB 7 downloads

CMP March 2017.jpg 128.08KB 7 downloads

Lactate Dehydrogenase.jpg 183.65KB 5 downloads

PCR test March 2017.jpg 106.17KB 7 downloads

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#2 kat73

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Posted 18 March 2017 - 11:52 AM

Pam - So happy for your continued success, especially since you've also had to deal with the pulmonary hypertension. It was largely because of your experience that I asked my cardiologist about PH and he readily scheduled me for an echo soon. I have no symptoms, but he said people don't in the beginning. I've recently had a pleural effusion that I stopped Sprycel for. At any rate, my labs are almost duplicates of yours . . . until I get to the last one. Sigh. How I wish. My old life was returned to me once I got off the TKI - it's been almost 3 months of total bliss. But soon I will have to go back in the tomb and clang the door shut behind me. February PCR was 0.02% IS; had another yesterday and fully expect it to show another increase. Maybe someday.

Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.

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#3 gerry

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Posted 18 March 2017 - 07:20 PM

Congratulations Pam.

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#4 Buzzm1

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Posted 18 March 2017 - 07:35 PM

Congratulations Pam on your 3 year TFR anniversary!

For the benefit of yourself and others please add your CML history into your Signature

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

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR PCR result pending... 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.

Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt

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#5 Melanie

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Posted 18 March 2017 - 08:19 PM

So happy for your continued success!

Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)