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had to stop 4th TKI, now what ??

Started by SusanL , Dec 11 2015 12:08 AM

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#1 SusanL

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Posted 11 December 2015 - 12:08 AM

Diagnosed 10 yrs ago. Gleevec (poor response after 2 yrs) Sprycel (pleural effusions) Tasigna (diabetes) Bosulif (4 months of severe diarrhea) Had to stop each TKI after 2 + yrs; Best response has been with Bosulif, PCR undetectable but not negative. When I switched from Tasigna to Bosulif I was off TKI for 3 month. PCR rapidly increased so I know I am not a candidate for stopping.

Oncologist is suggesting I go back to Gleevec. Is that my only option? Since my diagnosis I have had many ups and downs with discouragement over side effects but for the first time I feel fear. There was always "the next new TKI out there" but now I don't know of any. I also have developed aortic valve stenosis which will require surgery some time soon so don't want to take anything that will make that worse.

Any suggestions??? Onc wants me to start Gleevec after colonoscopy, endoscopy, ultra sound, liver tests all next week. Onc is always looking out for met of breast cancer.

Discouraged

Susan

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#2 Tucker1

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Posted 11 December 2015 - 09:36 AM

Susan your story sounds much like mine. I am now trying to take bousitinib but things aren't going well. I feel fear as well. I will keep you in my prayers.

Dx: 11/2004 intermediate risk 400 mg Gleevec
11/2005 partial cytogenetic response PCR 6.3
Clinical trial Sprycel 50mg 2x daily 12/05
11/06 PCR weak positive
10/07 PCR undetectable
12/08 PCR .017
Recurring colitis from Sprycel
11/09 Tasigna PCR .0075 200 mg 2x daily
11/10 PCR .078 400 mg 2x daily
11/11PCR weak positive
2/12 PCR. .15 decrease 200 mg 2x (QT prolongation)
Dosage changes until 2015 QT recurrent PCR .004
7/15 bosulif 500 mg
Liver toxicity discontinued bosulif PCR .025
Restart bosulif 100mg
12/15 PCR .714
Increase bosulif slowly
2/16 PCR.5
5/16 PCR .000 bosuitinib 400mg
8/16 PCR .027 Bosuitinib 300mg
10/16 PCR .117 Bosuitinib 300mg
1/17 PCR .243 Bousitinib 300mg
4/17 PCR .403

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#3 Trey

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Posted 11 December 2015 - 10:39 AM

I would look at low dosage Bosulif as the first option. You did not fail the drugs due to lack of response, but rather had tolerability issues. So going back to Gleevec, or low dosage Sprycel are also options.

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#4 hannibellemo

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Posted 11 December 2015 - 12:34 PM

Susan,

I was also going to suggest trying lower doseage Sprycel. I developed a nasty pleural effusion around the 2.5 year mark. I was off for 9 weeks to allow it to resolve and started back on 50 mg. Sprycel. I had lost MMR in the 9 weeks (darn near lost CCyR) and it took me almost 15 months to regain the MMR but it's now almost 3 years later and I'm PCRU and haven't been revisited by a pleural effusion while on the lower dosage. (Knock wood!)

Something to discuss with your doc, anyway. Good luck!

BTW, I think PCRU (undetectible) is, indeed, negative.

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>

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#5 SusanL

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Posted 11 December 2015 - 12:36 PM

Trey, that's were my thoughts were going also. Even if my PCR went up a little but remained stable, that would be ok. I've come to the acceptance I will never be negative anyway and I've heard low responses are acceptable, even for the long run.

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#6 SusanL

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Posted 11 December 2015 - 12:56 PM

Hannibellemo

The lab numbers my Dr. gives me never seem to be comparable with the terms everyone else uses here. 2 yrs ago when I went off Tasigna for 3 months my PCR went from ".007 to 60%. My latest PCR quote from Dr. " positive- BCR-ABL1 fusion transcripts amplified below reportable range, meaning low level too low to quantify.

Odd, isn't it, that you can be on a drug for 2 yrs and then develop intolerable, dangerous side effects. These drugs, wonderful as they are, must really be hard on our bodies. Mine seems to say, "up till now... been ok.... but no more".

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#7 Frogiegirl

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Posted 11 December 2015 - 02:17 PM

SusanL please elaborate on your stats.you mentioned going off tasigna for 3 months and your numbers rising to 60%......this is what scares me about going cold turkey for my last little one. ...and for some reason no one will talk with me about interferon. I have a major fear of the stuff! I'm waiting on my bcr-abl test from Wednesday....this would be test 3 and if it's pcru again I have to make it 2 more tests(6 months) then stop tasigna and get preggers! Dang this is such a hard decision to make. ....I know she's waiting to come into our family. ...but can mommy be fearless enough to get her here? ??? Sorry for ranting and high jacking your post. ......I wish you nothing but the best. I agree with the others. ..lower dose for sure;)

Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.

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#8 tinman1939

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Posted 11 December 2015 - 03:55 PM

I know Iclusig (Ponatinib) had some heart-related issues at a higher dose (45 mg), but my lower dosage of 30 mg/day for 19 months now has not revealed any damage to my heart. EKG is fine. Blood pressure controlled via medication. Of course, your heart doctor and oncologist should agree, together, on pursuing that TKI (or not).But, it is another option for you.

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#9 SusanL

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Posted 11 December 2015 - 04:38 PM

Dear Frogiegirl,

I can't help you with the interferon issue. I think I read somewhere that those who went on interferon and Gleevec a long time ago when TKI first came out had the best outcome when trying cessation of TKI. My Onc is totally closed to it. Maybe it was something that only worked at the beginning of the disease.

If you are PCRU I don't know how or why you expect to get better than that, the only issue with stopping might be the length of time you have been PCRU, the longer the better. I have never been PCRU in 10 yrs. I went off Tasigna because I was desperate to feel better and begged Onc to let me have a "holiday" whether my numbers went up or not. When I resumed tx on new drug, Bosulif, within 2 months my PCR went back down to what seems to be my lowest I will ever get. It probably would have taken another 3 mo off the Tasigna for me to develop any symptoms of relapse. Even at 60% my white count was normal and I felt no symptoms of CML. My onc is very cautious about stopping, she is not confident about whether there is a line you cross and it is harder to get disease under control again. I've never heard of anyone who stopped and then lost PCRU that was not able to get it back after a while. But then, the longer I have been around this disease the less I personally know. there are those floating around here that do know far more than I do. I hope they speak up and will help you. Maybe start your own topic.

Stopping TKI treatment for a pregnancy would be an incredibly hard decision to make, and I can understand your "ranting". do it all you want until you get the answer that brings you peace. I really am out of my scope of knowledge to give any advice. I have seen several writings on this site talking about the success they had with a drug free pregnancy. Have you thought about getting a consult with one of the experts.

My heart goes out to any young people with children who have to struggle with this or any disease.

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#10 kat73

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Posted 11 December 2015 - 05:42 PM

Frogiegirl - I think jjg is doing interferon injections and is past her first trimester; she might be able to counsel you.

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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#11 Frogiegirl

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Posted 11 December 2015 - 08:02 PM

Kat73 I tried writting her a personal message weeks ago. ...but have heard nothing back:(

Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.

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#12 kat73

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Posted 12 December 2015 - 10:42 AM

Yeah, I don't really understand this whole personal message thing on here - I unknowingly "ignored" several people for a long time, simply because I had no idea they had contacted me. Mortified. I don't get "fast reply" versus "reply" either. Fortunately, I THINK I now get an email telling me I have an email (!) Anyway, you might look at your notification settings and maybe jjg will also - and maybe she'll see this here. Hope so!

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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#13 Marnie

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Posted 12 December 2015 - 11:41 AM

Hi, Susan. . .

My story is similar to Hannibellemo's. After a number of pleural effusions, I'm on 50 milligrams of Sprycel, and while it's frustrating to SLOWLY by working my way back down to PCRu, I am getting there. Slowly. Oh, so slowly.

Perhaps you should consider low dosage Sprycel. My doc and I are working together to find the balance of enough medication to maintain reasonable numbers, but low enough dose to keep side-effects at bay.

Marnie

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#14 Melanie

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Posted 12 December 2015 - 12:42 PM

Susan,
As others have said lowering the dose enough to minimize the side effects and still be effective is a good plan. How much Bosulif are you taking? I've been able to maintain everything on 400mg, but I know there are others who are good at 300. Hopefully you can give that a try before anything else. Wishing you the best and remember there are always options.

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)

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#15 Buzzm1

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Posted 12 December 2015 - 01:21 PM

SusanL, since you have had your best response with Bosulif, excluding the severe diarrhea side-effect, I'd first try 100mg of Bosulif to see if it manages the CML without the diarrhea side-effect, knowing that you can always increase the dosage if necessary to control the CML..

Buzz

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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#16 SusanL

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Posted 12 December 2015 - 02:54 PM

I am certainly going to push for lower dose Bosulif as it, until now, has been least side effects. All I remember about Glevec was I felt miserable but then it was right after diagnosis and I was also on a breast cancer drug. Dr. changed to Sprycel due to slow response to Gleevec after 2 yrs.

thank you everyone for your input and encouragement. Without this site there would be no where to get tried and true information from the sources who know (those who live with this disease).

Will let you know what the outcome is. After I go thro colonoscopy, endoscopy, ultra sound next week. Depending on those results will have discussion with onc. So grateful for my medical ins e-mail system. Don't have to make appointments or wait for phone calls.

Susan

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#17 Cool Hand Leuk

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Posted 12 December 2015 - 06:43 PM

where do you live? perhaps you can participate in an ABL001 trial?

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#18 SusanL

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Posted 12 December 2015 - 08:25 PM

I live in North Orange Co Ca. My Onc told me many years ago I don't qualify for trials because I have a second (actually 1st) breast cancer. Sometimes if you have 2 cancers it disqualifies. However, I have been known to find out things she doesn't know, so please tell me more about it.