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Bummed and a little scared


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#1 sunshineC

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Posted 19 November 2015 - 02:33 PM

I hated Sprycel so much when I started with it, and now I wish I could stay on it.  It just stopped working I guess.  My numbers have been bouncing around and the doc finally called me in (I go on Monday) and I'm sure he's going to start me on something else.  I just hate the thought of trying to get used to another set of side effects.  Sprycel worked so well in the beginning, I never thought I'd have to be on anything else.  But I have never hit MMR and am now 21+ months in, sooo.  I was all excited about maybe being in clinical trials, and then at least reductions in mg or being totally off it someday.  I gotta admit, I'm just pretty bummed now.  And I know I may not have to go thru what I did with the Sprycel.  The side effects were horrible and I was out of work for 4 months.  But I did get used to them.  I also know there's a chance I won't have the same problem on something else.  My biggest problem is my own negativity.  I'm not just a 'glass is half empty' kind of girl.  I start out that way, but in no time it's 'OMG, THERE'S NO MORE GLASSES IN THE ENTIRE WORLD, WHAT ARE WE GONNA DO!!!!????!!!' 

So, I'm not there yet, which is good, but do have questions.  Has anyone ever heard of anyone who has gone thru all the TKI's and not reached PCRU (is that even right initials?  Gotta love the brain fog)?  What happens then?  I'm really not afraid of this.  I know there isn't much chance of that, but I thought maybe if I just got the thought out of my head completely, it would go away.



#2 kat73

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Posted 19 November 2015 - 03:44 PM

Sunshine - Fact:  Studies have shown that "glass half empty" types are actually more accurate and attuned to reality than their confreres.  This pleases me no end, for some reason.  ("I may be miserable, but I'm RIGHT!")  Another thought that fits your situation is, "just because you're paranoid, doesn't mean somebody isn't following you."  But, let's look for the horse here, not the zebra.  I had not hit MMR at 22 months, either.  But I was close, and no one was worried.  I happened to make the switch to Sprycel then and I started to get much better numbers.  Just sayin' that maybe you're very close and he's not going to switch you.  If you keep bouncing around, could you explore with him if you are doing anything different in how you take the pill or is there any variety in how they run their PCRs?  These things could be more of a factor in bouncing numbers than reality.  Additionally, it depends on what you call a bounce - .02 to .2 is a bounce; .02 to .05 is no bounce. 

 

If he wants you to switch, it's just as likely (50% chance) that you will be happier on the new drug as it is likely that you'll have to start all over again slogging through months of hell (50% chance).  I was beyond miserable on Gleevec - the repeated, "most people tolerate the drug very well" only exacerbating my misery - and the day I switched over to Sprycel . . . absolutely nothing bad happened.  I felt better right away - within a week.  I never had the Sprycel headache.  EVERYBODY IS DIFFERENT.  You may have a great experience if you switch.  (Whoa, sounds like the glass is half full. . .)

 

To be in emotional limbo and physical misery is hard, and it affects your judgment.  Give yourself a pass for going to pieces.  I hope Trey will weigh in on your deepest anxiety - kinda the grandaddy one we all have, I suspect - and that is, What if nothing works?  What if I run out of drug options?  What then?  Trey will have wise words, I know. 


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.


#3 hannibellemo

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Posted 19 November 2015 - 03:55 PM

Hi, sunshine!

 

PCRU is not the gold standard. You say you have never reached MMR, but that is not the gold standard either. Have you reached CCyR, that is, your PCR test is between 1% and .1%. If you have there is really no reason to change. 

 

You say it has "stopped" working because your numbers are bouncing around? Can you post your most recent 5 numbers so we can see what "kind" of bouncing you're talking about?

 

Your doctor can't "make" you change medications unless you agree to it and if you're happy with Sprycel and it's keeping you at least CCyR I wouldn't worry about it. Keep an open mind, though when you discuss this with your doc.

 

Good luck!


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>


#4 August1

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Posted 19 November 2015 - 04:24 PM

Hi Sunshine,

I am on 100 mg Sprycel. After 25 months my PCR was still 0.208% IS. So I had still not reached MMR. My oncologist was OK with this as my numbers were slowly heading in the right direction. 

 

3 months later I hit PCRU. I just and another test last week and that was also PCRU 0.000% IS. I am hoping to maintain response for another testing cycle (in 6 months) and potentially look at a dose reduction to reduce some of the side effects. 

 

So if you're in CCyR and close to MMR and still trending downward I am not sure you should need to necessarily change drugs. Especially if the side effects are now manageable for you. 

 

Take care,



#5 kat73

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Posted 19 November 2015 - 05:36 PM

Oh yes, hannibellemo, you added exactly really important points I missed saying.  Well said.  And yay for you, August1 - that's a great story!  So many times we get surprised when we are so sure what's going on.  And we're wrong!


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.


#6 sunshineC

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Posted 19 November 2015 - 06:59 PM

Thanks everyone.  Here are my test results:

10/20/14     0.70

01/08/15     1.4

02/24/15     1.27

04/07/15     0.47

07/27/15     1.00

10/26/15     1.00



#7 Buzzm1

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Posted 20 November 2015 - 11:28 AM

FWIW, If I was in the position of losing response to a given TKI, after reaching CCYR, I would be lobbying my onc to be switched over to a significantly lowered dose of another TKI.  If necessary. the dosage can always be increased, but there isn't any reason to take more medication if it really isn't needed to do the job, especially considering the toxicity and side-effects of the TKIs.  


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

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


#8 sunshineC

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Posted 20 November 2015 - 01:34 PM

Hi,

I am in the same boat as you, I was plateaued but now I am loosing response to sprycel. I just had another blood test yesterday to confirm it isn't just a bump in the road but I think the writing is on the wall that I will be switching to Tasigna in the next month. I am trying to stay positive about this, the way I look at it is that It may qualify me for a Phase 2 trial of ABL001 somewhere down the road, which is my light at the end of the tunnel. here's hoping anyway. And to think I was just getting back to having an almost normal life...

best of Luck to us both.

That's exactly the way I felt, finally "getting back to having an almost normal life".  And after all that 'getting used to'.  Not a waste, I know, but discouraging.  What is the Phase 2 trial of ABL001?  I had thought that if I had my numbers go down fairly quickly and where they needed to be, I might be able to get into some kind of trial for getting off the meds.  Or at least decrease the side effects.  Thinking that way just added to my feelings of failure and having to switch meds.  You just lit a little spark!!



#9 hannibellemo

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Posted 20 November 2015 - 05:25 PM

Thanks everyone.  Here are my test results:

10/20/14     0.70

01/08/15     1.4

02/24/15     1.27

04/07/15     0.47

07/27/15     1.00

10/26/15     1.00

Hmm, I wish there was more of a trend here. You might benefit from a drug change, but you could also stick with Sprycel and see what happens over the next 2 tests. The trend appears to be you drop then you have a slight rise and a plateau. Then you drop again (lower than the 1st) and then you have another slight rise (again lower than the first two rises) and a plateau. If I was comfortable on Sprycel, as I said earlier, I might want to stay the course for the next 2 tests and see what happens. If you have another rise then I would reconsider, but if you stay the same I'd wait for another test. You are CCyR now and holding so there is no rush to make a decision - IMHO. 


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>


#10 JPD

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Posted 21 November 2015 - 09:38 AM

My fellow Turtles - We really need our own forum.  You have no idea how happy (sorry, thats odd) to see that Im not alone in my not being in the "hey, everyone, Im undetectable after 3 hours on my TKI" (blessings and genuine happiness for all our quick responders).

 

Sunshine,

I'm on 400mg of Tasigna & the ONLY side fx I have is hair loss.  Mostly on my legs (though after the dosage raise, its thinned my head, too - but I shave my head, so its no biggie for me).  The point being - you dont know that Tasigna wont be a walk in the park compared to Sprycel.  BTW, Im in the same boat - my Tasigna has flatlined about .50-.85 after 23 months.... so I may be looking at a change, too.

 

The point being - dont borrow trouble from tomorrow.  Live your life, take the pills ;)


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#11 Cool Hand Leuk

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Posted 21 November 2015 - 02:16 PM

If I could only get it to make the hair on my back fall out

#12 JPD

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Posted 22 November 2015 - 11:08 AM

If I could only get it to make the hair on my back fall out

Im in pretty good shape.  Its made my "manscaping" a lot easier*

 

 

 

* fully prepared for some member to report me again & get my post moved


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%





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