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Swiching Meds


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#1 Badger

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Posted 06 March 2012 - 12:35 PM

There's a possibility that I may be switching from Sprycel to Tasigna.  Can anyone shed any light on what process to follow to avoid potential problems?  When I switched from Gleevec to Sprycel, my Onc just had me start Sprycel the day after taking my last Gleevec—wasn't a good idea!



#2 hannibellemo

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Posted 06 March 2012 - 12:39 PM

I'm always amazed when I hear docs doing that to their patients! As long as you aren't needing to wait for something to resolve itself, like liver issues, PE, etc. you should be ok after a week or so. I'd probably go for the "or so" if I could get away with it just so I could get a taste of feeling good again!

Good luck!

Pat


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"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>


#3 Susan61

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Posted 06 March 2012 - 12:48 PM

Hi Pat:  I totally agree with what you said.  Hope your doing good too.



#4 Headi

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Posted 06 March 2012 - 02:49 PM

My onc has suggeted that I will also be going to Tasigna from Sprycel at the end of March.  I paid attention to advise from folks on this blog and took a weeks vacation before going to Sprcel.  The transition was very easy. I tolerated it much better than Glevec. I am a bit worried about going to Tasigna as i'm tolerating Sprycel very well. Would be very interested in how you end up handling it, Badger. I would also love to hear from some who have already gone through the transition to Tasigna and some information on what to expect. I don't know f this is any help to you, but I'm leaning towards a week of no meds unless someone can advise if & why this would be a mistake. Thanks to all



#5 Sneezy12

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Posted 06 March 2012 - 03:38 PM

Why are you switching? Frank



#6 pamsouth

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Posted 06 March 2012 - 10:31 PM

Headi wrote:

My onc has suggeted that I will also be going to Tasigna from Sprycel at the end of March.  I paid attention to advise from folks on this blog and took a weeks vacation before going to Sprcel.  The transition was very easy. I tolerated it much better than Glevec. I am a bit worried about going to Tasigna as i'm tolerating Sprycel very well. Would be very interested in how you end up handling it, Badger. I would also love to hear from some who have already gone through the transition to Tasigna and some information on what to expect. I don't know f this is any help to you, but I'm leaning towards a week of no meds unless someone can advise if & why this would be a mistake. Thanks to all

If you are tolerating Sprycel well, why would you switching to Tasigna. How long were on Sprycel? When were you diagnosed?  I am assuming you started with Gleevec?

PamSouth


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#7 CathyS

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Posted 07 March 2012 - 09:23 AM

I would like to know what it is like to change meds also.

I am on Sprycel and may need to change to Tasigna

Background Info;

I was diagnosed in August 2011 started Sprycel. I went through not feeling well for a few weeks then it tapered off I still experiencing a few side effects that I am dealing with, then I started having trouble breathing and it started getting worse since the beginning of January the last two weeks I can hardly walk down a hall way with out gasping for a breath. I did have a bunch of other test to rule out any other things that could cause how I am breathing they were all good. So they decided to stop the Spycel for a week I go back next Tuesday and then we need to make a decision about changing to Tasigna. I asked my onc if we could just reduce the dose of Srpycel currently 100mg  my suggestion is to drop it to 20mg and take curcumin along with it because I have read so much about curcumin on this site..

She said I can take the curcumin but she feels strongly that no matter what the dose of Srpycel is it could still cause the breathing.

Question how did some feel when you started taking Tasigna?



#8 hannibellemo

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Posted 07 March 2012 - 10:04 AM

Cathy,

There is some anecdotal evidence that Sprycel can cause issues like this. If you go to http://www.newcmldrug.com and search for Leah's most recent thread. She talks about experiencing this and says that Dr. Druker has had other patients that go through this with Sprycel.

I also had a very tough 2-3 months shortly after I started Sprycel 21/2 years ago with shortness of breath, increased heart rate with little exertion, general malaise, etc. It disappeared and I have had no return until 2 weeks ago when I developed a sharp pain in my right side when taking a deep breath and some shortness of breath when climbing stairs, etc. X-ray showed a very small PE in my right lobe. My local onc and a good friend who is a liver specialist both expressed surprise that I am experiencing any symptoms from such a small PE so we're looking further. I  will have an echo cardiogram on Friday to look for any cardio involvement; they don't really expect to find anything but it will make me feel better - maybe, depending on the findings!

I am hoping we can manage this somehow, dose reductions, diuretics, etc. but I may also being switching in the future. As Gilda Radner said, "It's always something!"

Good luck, Cathy!

Pat


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"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 pamsouth

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Posted 07 March 2012 - 01:39 PM

I also hear that Tasigna is cheaper then Sprycel which became a patent in 2009.  I think Tasigna became a patent in 2007, not sure.  Does insurance have a say on which TKI they will pay for?

Just wondering, PamSouth


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#10 chriskuo

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Posted 08 March 2012 - 01:51 AM

Neither one is going off patent soon, unlike Gleevec, which only has a few years to run.

The cost of Tasigna and Sprycel are pretty comparable and substantially more than Gleevec.

One difference between Tasigna and Sprycel is that Tasigna is supplied in weekly blister-pack boxes, so you get

4 boxes for your monthly supply.  Sprycel is usually dispensed 30 pills at a time.

So, over the course of the year, you are likely to have 13 co-pays for Tasigna and 12 co-pays for Sprycel.



#11 chriskuo

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Posted 08 March 2012 - 01:53 AM

Did they take x-rays both standing up and lying down to rule out pleural effusion?

Do you show any signs of water retention in your legs and ankles?



#12 CathyS

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Posted 08 March 2012 - 07:53 AM

chriskuo

No they only took them standing. But I did have a CT of my lungs.

I do not have any fluid retention.

CathyS

Message was edited by: cathyS



#13 Headi

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Posted 08 March 2012 - 09:38 AM

My understanding is that I have not gotten to PCRU yet although my numbers have been going down with every PCU done. I was diagnosed in June 2009 and started on Glevec in July. The side effects were difficult and never seemed to get better, so my Onc put me on Sprycel in Dec 2011. I tolerated the Sprycel much better and it seems to be working, but perhaps not quick enough for my Onc. He is the one that suggested going to Tasigna after my next PCR at the end of March if i'm not in remission by then. My last PCR was done in Nov. 2011. My white count has continued to be normal since then. I'm not anxious to go on a new med when i am feeling good on the one I'm on.



#14 hannibellemo

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Posted 08 March 2012 - 11:00 AM

Headi,

The majority of us may never see PCRU and in my opinion that should not be the cake but the icing on the cake. What you need to be looking for, the cake, is CCyR (Complete Cytogenic Response) about a 2 log reduction or .2% on the International scale (IS) or zero FISH and MMR (Major Molecular Response) about a 3 log reduction or .1% on the IS. Sprycel is working just fine for you if you have reached a minimum of CCyR and even better at MMR. Guidelines indicate we should be at least CCyR by 18 months, preferably MMR by then.

Remission is not generally a term used with CML since we continue to have, even at PCRU, leukemic cells in our blood.

Please feel free to post your most recent results and someone will be able to tell you exactly where you stand with your tests.

Good luck!

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>


#15 CallMeLucky

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Posted 08 March 2012 - 11:08 AM

Headi - exactly what does your doctor consider "remission"?

I ask because most of the top CML doctors would tell you there is no such thing as remission in CML treatment.  You have varying levels of response.  Not to get into semantics but when I hear a doctor insisting that the patient should achieve a "remission" it makes me think they may not be fully up to speed on how CML is treated and monitored.

Let's assume your doctor is considering "remission" to mean when your PCR is negative.  What does that mean?  You should discuss with your doctor and find out what he thinks on this topic.  For instance it would be good to know if he is aware that a negative PCR score does not mean you have no more leukemia in your system.  Would also be good to know if he knows the sensitivity of the lab performing the test and if your sample was sent to another lab with more sensitive equipment your results could vary greatly.

My point is that some doctors are hell bent on getting you to zero because it makes them feel good (and maybe it helps you psychologically) but should you go through the risk of changing drugs just for the illusion of a remission that is not really there?  If the lab only tracks to a 4 log reduction and it shows negative but if you sent it to a lab that did a 4.5 log reduction cut off does your doctor think there is much of a difference between .0000 and .00001?

The issue at hand here is that your doctor appears willing to change your treatment option that is working well for you to see something on a test that is not accurate enough to answer the question he really asking.  I think you as the patient should understand if he knows this and then decide if changing drugs is what is best for you.

You haven't stated what your level of response is, but if you are greater than a 3 log reduction (i.e. major molecular response) and you are doing well on Sprycel, you may want to give it some time rather than chancing a change to another drug that you do not know how it is going to affect you.


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%
 

 


#16 Headi

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Posted 08 March 2012 - 11:56 AM

Thanks so much for the response to my questions. I don't really know how to read my lab results, so I will do as suggested by Pam and post them. This is what is listed Under results: BCR/ABL1: DETECTED, under that is BCR/ABL1 of b2a2 Type: 0.68%

   BCR/ABL 1 of b3a2 Type: Not detected

   BCR/ABL 1 ofe1a2 Type: Not detected.  The only thing I know about this is that every time I have had a PCR done the line goes lower on the chart and the percentage is less than the time before. I have been following the posts here on and off for possibly a year or so without saying much, but just following the chatter has been very helpful in many ways. I was not unhappy to get off Gleevec, so I didn't challenge the dr. on that, but now I'm not sure about changing so I need to know why.  When I was diagnosed with CML my Onc. said you are lucky, you have the type of leukemia that can be treated and maybe even cured, so just take these pills and go live a normal life??? Thats about all the understanding of the disease I got from him. All my learning has come from this blog, so I thank you all. (I have copies of postings from Trey in my medical files which have helped me to understand some of the terminology as well as the tests : )  I have written down the questons from Hannibellemo and call me lucky and will bring them with me to next apt. I will be very grateful If anyone can explain these test results. Thank you again.



#17 Trey

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Posted 09 March 2012 - 09:56 AM

The key issue in response to drug therapy is a continually declining PCR result (although not always fast or in a straight line).  You describe a "good" response.  Your PCR numbers are best compared to the results before them, not to how others responded.  Although there is a small chance that Tasigna would provide a better response, there is also a chance that it would not be any better, or maybe even not as good.  Many Oncs might switch the patient from Gleevec to another drug if the response is somewhat slow, but would stick with either Sprycel or Tasigna if they are working "well enough".  Trying to attain "better" when you already have "good" goes beyond both the science and understanding of these drugs.  If you want to stay with Sprycel, that seems a reasonable choice.  If you want to try Tasigna, there is nothing inherently wrong with that, but it might not accelerate the PCR decline.  However, if you do switch you could always return to Sprycel, since as long as a drug works for someone they can always return to it. 



#18 Headi

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Posted 09 March 2012 - 08:46 PM

This is very good news to me, as I was not sure if my response was considered good especially since my dr. was talking about me switching meds again. I did make one mistake in my post. I said I started Sprycel in Dec. 2011.  That was a typo, I started it in Dec 2010.  I hope that doesn't change things.  The response has been a little slower on Sprycel than on Gleevec, but as I said its so much easier on me as far as side effects go and I would like to give it a little more time.

Thank you for your input, Trey. I respect what you say. That along with others who have offered suggestions has put me in a better place to come to a decision on this if I have to. 



#19 Trey

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Posted 09 March 2012 - 09:25 PM

It is also useful to understand that drug response can often reach a plateau and remain somewhat level for a while before heading down again.  This seems to occur about the 1 -2 year point in the treatment cycle.  I think the lack of experience with these drugs by most Oncs causes them to have unrealistic expectations about a straight line drug response.  The early fast response is the drug killing off the easy-to-kill lower level leukemic cells.  Then the drug must work up the chain of higher level leukemic cells, and they are harder to kill the higher they are in the chain.  This causes the response to appear to slow down, although in reality the drug is preventing the higher level leukemic cells from proliferating into the lower level leukemic cells. 



#20 Judy2

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Posted 09 March 2012 - 09:57 PM

Hi Trey,

Do you think it is important for all of  us to reach MMR or can we live with a higher PCR and still not risk the disease progressing or a mutation developing? If that is the case, what do you thnk that level could be? Thanks if advance.

Judy






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