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At what number is it getting serious?


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#21 AdamJ

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Posted 13 August 2017 - 07:24 PM

You are right that you should start something. One thing I didn't think of before is that it may take time to get things through your insurance as they are likely to stall in an attempt to save some money (while your numbers continue to increase).

 

As for the choice, I have taken both (although the Tasigna was brief). I think the experience varies for everyone. While I was on Tasigna I developed a skin rash that irritated me more every day until I stopped taking it (due to liver intolerance, not the rash).  I am much happier with Sprycel so far (although every time I feel any shortness of breath, I wonder if it is pleural effusion).  The 6 hours a day that you can't eat also means mealtimes are pretty rigid while taking Tasigna.  You have to plan your meals around your medicine.  That may be an important factor in your decision. I was certainly happy to say goodbye to that constraint.


3/23/2016 Dx PCR 93.4399% IS, FISH 87%
3/30/16 Sprycel 100mg
4/15/2016 liver toxicity and a brief stint on Tasigna 600mg book-ended by drug breaks
6/6/2016 resumed Sprycel at 50 mg increased to 70 one month later followed by 100mg
6/17/2016 FISH Test 2%
8/22/2016 PCR 0.0035% IS
11/7/2016 PCRU
12/29/2016 PCRU
4/5/2017 PCRU
6/28/2017 PCRU
10/26/2017 PCRU


#22 Pen_Pen

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Posted 15 August 2017 - 07:04 PM

So I just left my onc's office. He's going to start me on 70mg of Sprycel. It has to be submitted for approval, I have to get an EKG and blood work done. I'm nervous. I just hope and pray I tolerate this one better. Thanks again everyone.

~ Diagnosed Jun 2001 ~ Bone Marrow Transplant Mar 2002 ~ Came back Jun 2009 ~ Gleevec 400mg Jul 2009 ~ Stopped May 2010 Due to muscle toxicity ~ Undetectable ~ Past couple years my number has slowly climbed ~ Currently at a 9. Will be starting Sprycel 70mg soon ~


#23 scuba

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Posted 16 August 2017 - 06:32 AM

So I just left my onc's office. He's going to start me on 70mg of Sprycel. It has to be submitted for approval, I have to get an EKG and blood work done. I'm nervous. I just hope and pray I tolerate this one better. Thanks again everyone.

 

It's good that your doctor is not starting you at 100mg (typical starting dose). It would have been better if he had started you at 40mg and test response in 1 month. There is a very good chance in your case that lower dose sprycel will be very effective (given your prior PCRU status and transplant). Consider asking your Oncologist to lower dose further after trying 70mg and it works well. You want to avoid any pleural effusion and other side effects that is possible at the higher dose. It's normal to have headaches for a few days when starting sprycel. Those will fade away in a few days. I am PCRU on 20mg Sprycel.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#24 blueheron

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Posted 16 August 2017 - 08:50 AM

Best of luck with the Sprycel, been on the stuff since 2013. I take it in the morning with plenty of tea and maybe some toast. I try to stay active and hydrated during the day with frequent long walks to keep everything circulating so that potential toxins don't build up as much. Just my personal strategy. I hope it works for you!


DX 6/2013

Sprycel 100mg

CCR 3/2015

MMR 2/2016

<.01 IS 10/16 hopkins didn't report actual percentage

.007 IS 6/2017

<.01 12/2017 again no actual percentage but didn't see the report myself yet


#25 Pen_Pen

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Posted 16 August 2017 - 12:57 PM

It's good that your doctor is not starting you at 100mg (typical starting dose). It would have been better if he had started you at 40mg and test response in 1 month. There is a very good chance in your case that lower dose sprycel will be very effective (given your prior PCRU status and transplant). Consider asking your Oncologist to lower dose further after trying 70mg and it works well. You want to avoid any pleural effusion and other side effects that is possible at the higher dose. It's normal to have headaches for a few days when starting sprycel. Those will fade away in a few days. I am PCRU on 20mg Sprycel.


I wish he would have started me lower then 70mg. He actually wants to raise me to the 100mg if I'm tolerating the 70mg okay. :(

~ Diagnosed Jun 2001 ~ Bone Marrow Transplant Mar 2002 ~ Came back Jun 2009 ~ Gleevec 400mg Jul 2009 ~ Stopped May 2010 Due to muscle toxicity ~ Undetectable ~ Past couple years my number has slowly climbed ~ Currently at a 9. Will be starting Sprycel 70mg soon ~


#26 Pen_Pen

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Posted 16 August 2017 - 12:59 PM

Best of luck with the Sprycel, been on the stuff since 2013. I take it in the morning with plenty of tea and maybe some toast. I try to stay active and hydrated during the day with frequent long walks to keep everything circulating so that potential toxins don't build up as much. Just my personal strategy. I hope it works for you!


Thank you! I'm happy you're doing well on it. I hope I do well on it also. :)

~ Diagnosed Jun 2001 ~ Bone Marrow Transplant Mar 2002 ~ Came back Jun 2009 ~ Gleevec 400mg Jul 2009 ~ Stopped May 2010 Due to muscle toxicity ~ Undetectable ~ Past couple years my number has slowly climbed ~ Currently at a 9. Will be starting Sprycel 70mg soon ~


#27 hannibellemo

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Posted 17 August 2017 - 08:21 AM

Pen_Pen,

 

Haven't been on in awhile and just saw this post. Unless you don't respond to 70 mg. of Sprycel, and I would find that hard to believe, resist, resist, resist your onc if he wants you to increase your dose. That's nuts! Why would anyone want to increase dosage if a lower one is working?! Another reason to try 50 mg. as soon as you can is the 50% price break! (At least that is the situation with my insurance, no price reduction until 50 mg. I think there is another price reduction at 20mg.)

 

I started 100 mg. Sprycel, after liver toxicity on Gleevec, and hated it for the first few months. I was below MMR when I developed a pleural effusion 2.5 years in. After that resolved (and I had almost lost CCyR) I dropped to 50 mg. It took me about 15 months to get back to MMR and  a few more years to get to PCRU. 

 

My point in all this is that time is definitely on your side as I am 40 years older then you. It appears to be very common that TKIs need to be continued after transplant at some point.

 

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>


#28 Pen_Pen

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Posted 17 August 2017 - 07:17 PM

Pen_Pen,

Haven't been on in awhile and just saw this post. Unless you don't respond to 70 mg. of Sprycel, and I would find that hard to believe, resist, resist, resist your onc if he wants you to increase your dose. That's nuts! Why would anyone want to increase dosage if a lower one is working?! Another reason to try 50 mg. as soon as you can is the 50% price break! (At least that is the situation with my insurance, no price reduction until 50 mg. I think there is another price reduction at 20mg.)

I started 100 mg. Sprycel, after liver toxicity on Gleevec, and hated it for the first few months. I was below MMR when I developed a pleural effusion 2.5 years in. After that resolved (and I had almost lost CCyR) I dropped to 50 mg. It took me about 15 months to get back to MMR and a few more years to get to PCRU.

My point in all this is that time is definitely on your side as I am 40 years older then you. It appears to be very common that TKIs need to be continued after transplant at some point.

Good luck!


Hello!

Oh believe me, I will definitely resist. If it were up to me I would have started at 20mg. I'm freaking out and I haven't even started it yet. My biggest fear is the pleural effusion. I wonder what's the chances of NOT ever having that problem. I normally retain fluid from time to time, so I'm scared Sprycel will just make it that much worse. :(

Thank you for wishing me good luck! :)

~ Diagnosed Jun 2001 ~ Bone Marrow Transplant Mar 2002 ~ Came back Jun 2009 ~ Gleevec 400mg Jul 2009 ~ Stopped May 2010 Due to muscle toxicity ~ Undetectable ~ Past couple years my number has slowly climbed ~ Currently at a 9. Will be starting Sprycel 70mg soon ~


#29 kat73

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Posted 18 August 2017 - 03:47 PM

Pen - I believe the stats are that close to 30% of Sprycel takers will have a pleural effusion at some point, the preponderance being Grade I or II.  I had two small ones that nobody decided to treat.  I had another that I went off Sprycel for and that took care of it pretty quickly.  The problem for me is that I can't really tell when I've got 'em - the symptoms are so subtle and vague.  Starting at 70 mg you should have less of a chance of facing this, although that's no guarantee.  But please try hard not to freak out about the switch, because the mind is SO powerful - you can really bring on a host of misery if you anticipate trouble.  I went from one day taking Gleevec 400 to next day taking my first Sprycel 100 and I didn't feel or experience a thing.  Except for by the end of the first week, my eye puffiness was all gone, along with the random nausea.  I felt terrific.  No headaches, no GI disturbances, no muscle soreness or cramps, nothing.  Eventually I got a weird rash, cyclical for awhile, and then gone for good.  Yes, the pleural effusions are a worry.  But the difference FOR ME between Gleevec and Sprycel was hell turned into heaven.  Eventually fatigue and depression inched their way back into my life, but my onc says the fatigue is associated with all the TKI's.  We struggle on!  You are young, and they're going to find you a cure.  Yay!  Let us know how you get on with the switch. 


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.


#30 Pen_Pen

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Posted 18 August 2017 - 06:20 PM

Kat73,

Thank you for your encouraging words. I also appreciate you sharing your story. As I said once before, it's nice to know I'm not alone. I'm going to try and stay positive. Once I start taking the medicine I'll be sure to let you all know how it's going. :)

~ Diagnosed Jun 2001 ~ Bone Marrow Transplant Mar 2002 ~ Came back Jun 2009 ~ Gleevec 400mg Jul 2009 ~ Stopped May 2010 Due to muscle toxicity ~ Undetectable ~ Past couple years my number has slowly climbed ~ Currently at a 9. Will be starting Sprycel 70mg soon ~


#31 hannibellemo

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Posted 19 August 2017 - 08:46 AM

Pen_Pen,

 

Looking on the positive side of pleural effusion occurrence, 70 - 75% of those of us on 100 mg. of Sprycel never experience a pleural effusion. There's no reason to believe you won't be one of those!


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>


#32 Pen_Pen

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Posted 20 August 2017 - 11:57 AM

Pen_Pen,

Looking on the positive side of pleural effusion occurrence, 70 - 75% of those of us on 100 mg. of Sprycel never experience a pleural effusion. There's no reason to believe you won't be one of those!


You're absolutely right!!! :) Think positive!

~ Diagnosed Jun 2001 ~ Bone Marrow Transplant Mar 2002 ~ Came back Jun 2009 ~ Gleevec 400mg Jul 2009 ~ Stopped May 2010 Due to muscle toxicity ~ Undetectable ~ Past couple years my number has slowly climbed ~ Currently at a 9. Will be starting Sprycel 70mg soon ~





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