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Advice, Opinion?

Started by Krock41976 , Jul 24 2017 04:39 PM

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6 replies to this topic

#1 Krock41976

Member

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16 posts

LocationIndianapolis

Posted 24 July 2017 - 04:39 PM

Hi! Had my 3-month visit today after finally reaching MMR in April and my numbers went up. I'm still in MMR and my doctor said she wasn't overly concerned but that if my numbers have continued to rise at my next 3-month visit, she would want to move me to Ponatinib (she said that's the strongest drug out there) and start preliminary transplant research. I feel like she's jumping a few steps. Why wouldn't we try other drugs first? She told me I shouldn't be concerned at this point (if she doesn't want me to be concerned, then she should stop talking about transplants!!) My history is below. I bought I'd read somewhere that maintaining CCYR is considered almost as good as reaching MMR? My numbers do seem to bounce around a lot, but I'm feeling fine. Is she just being slightly alarmist? Thanks,

06/17/2015 = 241.017 - started on Gleevec
10/21/2015 = 0.522
01/22/2016 = 0.914
02/01/2016 = ABL mutation not detected (Gleevec only)
04/29/2016 = 0.122
07/22/2016 = 0.583 - switched to 600mg Tasigna
10/07/2016 = 0.321
01/18/2017 = 0.211
04/10/2017 = 0.077
07/14/2017 = 0.099

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#2 jjg

Advanced Member

Members
80 posts

Posted 24 July 2017 - 05:22 PM

The small increase is within measurement error. You have MMR. I wouldn't be worried.... resume normal programming

Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017

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#3 thatguy

Advanced Member

Members
318 posts

LocationWild west

Posted 24 July 2017 - 05:51 PM

Check out my signature, rest easy. Yes according to Dr. Deininger, a specialist, ccyr maintained for 2 years is practically equal to mmr in prognosis.

3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

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#4 Buzzm1

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972 posts

LocationSilicon Valley

Posted 24 July 2017 - 09:52 PM

to add your history/status into your signature

upper far right, click on the drop down menu after your name..

select My Settings ..

on left-side, select Signature

scroll down, enter history/status info, Save Changes

thanks for participating

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 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.

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 kat73

Advanced Member

Members
884 posts

LocationWashington, DC area

Posted 25 July 2017 - 04:15 PM

Krock, you are FINE. Don't change anything, except perhaps your onc.

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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#6 Trey

Advanced Member

PS Beta Group
1,705 posts

LocationSan Antonio, Texas

Posted 25 July 2017 - 04:31 PM

Such increases (statistically insignificant) are very common and mean nothing. It is only if you see a 1 log increase plus loss of CCyR that would be a concern. Your Onc shows a serious lack of knowledge about CML.