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Anyone Else Stallin' on Sprycel?


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#1 Tedsey

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Posted 30 March 2012 - 03:20 PM

Just wondering if there are other 100mg slugs out there on the most powerful, approved CML drug, Sprycel?  I am feeling very, very disappointed.  My PCR came back the same as my last.  I am still not MMR and have been on Sprycel since Sept. 2010 (18mos.).  I am very scared to say that I think I am developing PE.  I cannot shake this cough and I have been wheezing.  Ironically, I only have trouble breathing at night when I sleep, and occasionally at that.  I am too scared to push to have it checked (although onc knows).  Since Gleevec didn't do it, I am very terrified the same thing is happening with S.  I did not make the NCCN milestone for MMR at 18mos.  But, I guess stable buys me 3 more months at least.  I feel sick to my stomach.  I was so hoping for MMR.  Reading about how so many reach MMR within 6 mos to a year and others within a year, even with higher WBC and beginning PCRs, I cannot say how disappointed I am.  And Michael reaching MMR on 20mg is a miracle.  The same thing happened to me with G at 9 months.  Can someone just stay stable for years and years and never reach MMR?  I was so wishing for a dose reduction.  I have had mouth sores for over a month now and talking and eating is such a chore (this has been on-going since 3-months on S).  My PLT are still low.  Any guesses on why the PLT won't come up?  If I come out fine with the PE, (just have to get the guts to beg for an x-ray), would a dose escalation be called for?  I am pretty active (which I think may help with PEs).  I know, I should be satisfied the PCR is stable.  I was even imagining hanging with my kids as they got older.  I am getting way too bold with this CML thing thinking that I will see them grow up (I am so close with my oldest starting Kindergarten this fall).  Can you worry yourself into an SCT?  Ugggggh.  I so want to get off this CML merry-go-round with my life in tact.  Please Mr. & Ms. scientists, come up with a cure already!  Needed to vent.  I know stable is OK, but it just doesn't feel that great.

Tedsey

P.S.  I have never missed a pill, ever, since dx.



#2 Tedsey

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Posted 30 March 2012 - 03:23 PM

Sorry, I didn't mean I reached MMR like Michael.  At 9 months on G, my last 3 PCRs were the same, so I was switched to S.



#3 CallMeLucky

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Posted 30 March 2012 - 03:37 PM

"Can someone just stay stable for years and years and never reach MMR?"

The issue of MMR as I understand it is in trying to predict the likelihood of future relapse.  The defining milestone that drives overall survival is CCyR.  I have read of people who over 10 years on TKI drugs, never reaching MMR and plugging along at CCyR.  If you really look at the difference in overall survival for CCyR vs. MMR, I don't think it is very big, only a few percent if I remember correctly.

I'm sorry you are not responding more optimally, I understand you're scared and I understand how frustrated you are.  I don't have any really great advise.  The only thing I can tell you are the things you know.  As long as you are stable you are ok.  You still have Tasigna to try.  Bosutinib and ponatinib will be coming soon.  There are other things in the works.  I'm sorry stable is all you have at this point, but you are stable and until that changes, then the only difference is how you deal with it.  I know how hard it is to try and accept where you are and not let it bother you, unfortunately that is your only option at this point.  There is nothing to be gained from driving yourself mad and I maintain that it would be a shame to look back 20 years from now and regret having spent all the time worrying about not making it.  Certainly harder said then done, but it really should be the goal for all of us to make the best of each day, enjoy what we can and try not to worry too much about the uncertain future.

I wish you peace of mind more than anything else.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#4 Marnie

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Posted 30 March 2012 - 04:00 PM

Hey, Tedsey

Hang in there.  You are one of the most upbeat people when it comes to frustration with all of this.  I'm a bit irritated w my onc's office right now.  Waiting on results and didn't even receive a return phone call from them regarding my latest pcr which should be in by now.  I'm a plodder, too, so my anxiety is up.  I don't even really know where I am right now because of all of my insurance switches which meant lab switches.  My last reliable pcr trend was up slightly and that was in November.  New baseline was in January so I'm starting from scratch!  Arrrrgh!!

What kind of answers do you get from your onc?  Does he think that sprycel is the right med for you?  Most importantly, are you able to find ways to take care of yourself and to minimize your stress?  You are doing a fabulous job of managing your life with your little ones, but it has to be exhausting, especially with your current side effect issues. 

Take care of yourself.  I hope that things turn around soon

Marnie



#5 pamsouth

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Posted 30 March 2012 - 04:00 PM

Tedsey,  I am not on Sprycel.  I have been on Gleevec for 6 1/2 years.  My labs are not always undetectible.  They usually stay in a wave from Undetible to 7 % on the PCR and Fish from undectile to 92 % normal.

I am happy to stay on Gleevec at the same dose, as long as they stay in that range and not a steady trend up.

Looking at the big picture my other labs are very good, CBC, electrolytes, liver, kidneys, no anemia, and all that is good.  I think if I took a stronger dose my quality of life and other labs would go down hill. 

I have my good days and bad days.  I think if I put it all together old age 64 years, CML, TKI, well I think that says it all.

Even if I were not on these TKI I am sure that I probably would have some aches and pains.

Does anyone really know the big picture of who will longer at which  drug which level of response and toxicity, I think that is a billion dollar question!.

PamSouth


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#6 JoshLee

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Posted 30 March 2012 - 04:39 PM

Hey Teds,

      My oncologist told me he has had a patient on Gleevac for over ten years that has never made it to MMR. Also, another one that constantly bounces around from LFR 2.5 to 3. I think the fact that you have been CCyR for a while is a great prognostic indicator. Who knows what's going to happen. I just keep trying to keep the faith.



#7 lehrerin

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Posted 30 March 2012 - 06:19 PM

   Sorry to read that your PCR has plateaued.....kind of like ours......

I think a day a the zoo, then dropping the kids with the guys and spending the evening at the Hala Kahiki Lounge is just what we need.

Trey needs to start building that lab in your basement!

Hugs from your IBFF



#8 hannibellemo

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Posted 30 March 2012 - 06:32 PM

Teds,

I am so sorry you are understandably stressed out! I agree with Lucky, though, you are a stable CCyr and that is good enough. There are lots and lots of people with CML who are CCyR and doing just fine! I don't know what it is about Americans, we are so damn competitive. We have to have the lowest scores in the shortest amount of time. Piffle, I say, piffle!

I went for a check up with my PE today and although I feel much better than I did before the thorocenteses it's still there so we're going to try steroids once more. Instead of the pak I'm going to do 40 mg of prednisone for 5 days and taper off the following 4 days. The results of the tests on the fluids indicate that this may be a successful course of management since mine is definitely an immune-mediated reaction.

All of the studies I've looked at (and I've looked at every thing I can find) indicate that PEs should be identified rapidly and that patients should be educated to recognize and report relevant symptoms - i.e. chest pain (I did not start out with chest pain), dyspnea (shortness of breath) I did have that and the onset was immediate. One day I was fine, the next I was very short of breath lugging my suitcase upstairs to my bedroom to unpack, and/or dry cough. I did not have that until later. I also think mine was coming on for awhile before the symptoms set in. On the 2/27 it was very tiny - just blunted the tip of the lung and by 3/14 by CT scan it was considered moderate in size and my symptoms had grown exponentially. On 3/19 I have 1.25L of fluid removed. It has not (knock on wood, returned).

My point in telling you this is - get a baseline CXR. If you already have a baseline get another to see where you are. I've heard others talk about "air hunger" on Sprycel who did not have PEs. Very likely that is your case, but why worry about it when a simple x-ray may tell you what you need to know. There are factors that are significantly related to the development of a PE: history of cardiac disease, hypertension, hypercholesterolemia, and history of skin rash during imatinib or dasatinib therapy. The last definitely applies to me and I am going to have my cholesterol checked in a couple of weeks and if it is high I'm going to address it.

Take care Teds, and take heart. I know it is particularly stressful on you young people with your lives and families in front of you!

Thinking of you!

Pat


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>


#9 Guest_billronm_*

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Posted 30 March 2012 - 07:06 PM

Hi Tedsey,

   I feel so bad for you,having to wait for your numbers to change. I never knew anything about numbers until I joined this site. I was 3 1/2 years with cml before I found my new wonderful virtual family. It was at that time that I was told my bcr-abl was zero. I didn't even know what that ment, then she explained it to me I was thrilled. I had been on G all that time. I have no idea what my numbers were all that time. I'm the type of person who would have driven myself and everybody else crazy. I still don't know anything about the numbers, I get bw every month,and the bcr test every 3 months. I just had my bw-bcr done Monday,so when I see my onc this Monday he'll tell me how it is. Last week I was afraid I was getting a pe, for a couple days I would get spells where I felt like I couldn't take a deep breath, and I felt like something heavy was on my chest. I had a few really bad coughing spells. I had myself convinced I had a pe. But it went away after a couple days so I'm sure it was my nerves. Sprycel can give you a cough and it does a number on the sinuses, plus other meds can cause a cough. This is the worst allergy season in 100 years, I heard. So try to calm yourself down, I know it's hard, but you're going to be around to see your grandchildren go to kindergarten.

  Take care Billie



#10 Marnie

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Posted 30 March 2012 - 07:08 PM

Aaarrrgh!!!  Just got a call. They sent my blood to yet ANOTHER lab! @!!*#%£!!



#11 GerryL

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Posted 30 March 2012 - 09:34 PM

Hi Teds,

To use an aussie term "Bugger". Was hoping that your PCR results had dropped, so that it could ease your mind a bit.  Wish they could come up with something for your mouth sores to make life more bearable.

(((hugs)))



#12 Judy2

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Posted 30 March 2012 - 09:51 PM

Hi Teds,

I am sorry you are so discouraged and anxious but please try to hold on to what others have said, being MMR is not as important as being CCyR. Also, remember there are two other meds coming out this year and I have heard great things regarding Ponatinib.You will be around to see your children grow up, Teds, you will get through this difficult time. Remember, we are all here for you and will be praying for you.

Hugs,

Judy

Hi Marnie,

I hope  yo get your PCR results soon, too much anxiety goes along with this disease. Please let us know when you get the results.

xo,

Judy



#13 Guest_billronm_*

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Posted 30 March 2012 - 10:55 PM

Marnie,  Did they say why?



#14 Marnie

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Posted 31 March 2012 - 04:42 AM

I will see the doc in 2 weeks and will find out why and try to get things worked out so I can start having a consistent lab.  Bombers were good but reluctant to trust them since its another new lab



#15 PhilB

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Posted 31 March 2012 - 10:13 AM

Hi Tedsey, really sorry to hear the numbers weren't all you are hoping for and let me be the first to second Gerry's Australianism.  Having said that, I think you may need to change your mental animal.  Being a tortoise has let you plod on through some difficult times and make good progress, but it's time to change and be a horse.  You ask any horse and they'll all tell you the same thing. Stable is a really good place to be.  Drink your water, eat your oats, chat with the other horses and generally chill out in your nice comfy stall.  MMR is great, but SUSTAINED CCR IS JUST AS GOOD.  All the papers I read when diagnosed said that CCR maintained for 2 years is basically exactly the same as MMR in terms of prediction.  Get back to planning to see your kids grow up.  But I'd suggest you get in all the riding on your back soon as they really do get heavy as time goes on.

All the best

Phil



#16 lala

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Posted 31 March 2012 - 03:38 PM

Hi.  I am sorry to hear this, Tedsey.  The mouth sores must be miserable.  I wish your test results were what you were hoping to see.  I always feel bad for you young mothers.  It is easier to have this disease at 55.  I hope your mouth heals AND your results improve!!  All the best,  Lala



#17 ChrisC

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Posted 31 March 2012 - 04:37 PM

Hi Tedsey,

First, kudos to you for not every missing taking your meds: you are such an excellent patient! And doing so with a family and kiddies, that really shows great character and determination. You are an example to us all!

Second, I agree that the newer emphasis on fast response and then quickly reaching MMR is unfair and perhaps not especially valid. It's fine if you do have such a response, but if you don't — if you are maintaining a good-enough response — that says it all: it's good enough! Many have maintained life well with such a response, and have reported on it here and on other boards. Perhaps more readers who have similar response to treatment would like to speak up and console Tedsey, please?

And finally, while it has been helpful for me for well over 20 years to favor Maharishi Ayurveda as an alternative approach to health, I don't expect that many others here buy into it. However, here is a link to a page where someone asks them about what to do about chronic canker sores, they've tried everything else. You might want to try some of the suggestions if you haven't tried them already, without going into buying any of the merchandise offered or the philosophy behind it all: just see if anything mentioned is helpful?

http://www.mapi.com/...ankersores.html

All the best,

ChrisC


Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#18 GerryL

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Posted 01 April 2012 - 06:10 AM

Hi Teds,

Phil is right, from now on I'm going to think of you as a Brumby.

Deep in the heart of the outback where the golden eagles reside

The brumby herd runs fast and free across the great divide

Blacks, and bays, and duns galore, with flying manes and tails

They leave their hunters in the dust as they follow their ancient trails.

Read more: http://authspot.com/.../#ixzz1qmmzj6yF



#19 pamsouth

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Posted 01 April 2012 - 02:09 PM

Phil, That is the exactly the way I feel about my labs of over 6 1/2 years as long as they are stable, and CBC' and organs are good, then I am a happy camper.  Most trying to achieve a certain marker, thinking they will live longer or not mutate off.  I think there is a much bigger picture. STABLE, QUALITY OF LIFE, NOT TO MUCH TOXICITY TO BODY.

This is all science in the unknown territory of new drugs with short trial and history, with a world population of specualtion.

PamSouth


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#20 Tedsey

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Posted 07 April 2012 - 12:03 AM

Thanks everyone so much for your responses.  It really made me feel much better.  I am so grateful for all of you. 

Good health and happiness to all,

Teds






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