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Personal cessation trial report


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#21 nsharavana

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Posted 23 September 2015 - 01:28 AM

dear scuba, many thanks for posting about your cessation experience..sharing our opinions and experiences

will go a long way in all of us achieving our long term objectives in this serious fight.

 

i am also happy to inform that dr cortes is a very kind man and is gracious and magnanimous enough to correspond and advice a distant patient like me on e-mail..may his tribe increase!!!

 

i am a CML patient since 2003 from india .i am in MR 4 presently on international scale..i am keen to share my own personal experiences of my 13 year long CML fight.

i was on 800 mg glivec for long time being a slow responder..am presently on deescalated 400 mg dose since past one year..i am also keen to attempt a TFR but have never been PCRU consistently..i am considering adding low dose

interferon for 12 months.

 

best wishes to all you fellow fighters..we will prevail in the end and win..we need to have faith in modern science and research and it is just a matter of time before a true cure is discovered.

 

sherry from india



#22 minu

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Posted 26 September 2015 - 01:56 AM

Scuba, there is no better medicine than hope. Your journey gives us hope. Please keep posting. I live in a country where there is no pcr testing facility and only two TKIs available and yet I wonder if I could take your path. I hope that you get successful in your effort. Minu

#23 CallMeLucky

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Posted 27 September 2015 - 09:54 PM

If you stop posting then I'll just have to email you.

You're not gloating and if someone feels that those of us who are doing good are gloating then we should understand how they feel, support them and continue on. That is the name of this game, continuing on as long as we can and making the most of it. I have tremendous compassion for those who are not doing well and I also have some envy for those who have stopped treatment and appear to have won over this disease. None of us know for certain when things may turn for us one way or another or when then bus is coming around the corner, so we move on.

I just got my latest PCR , number four negative, that's one year consistent. 100mg Sprycel does the trick. Lower dose didn't work. So maybe I can't stop or maybe in another year or two if it holds I can try. Dr even said I could try now but better to wait if I can tolerate it. I'm at peace with where I am, so I'll stay the course for now.

Best of luck to all
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%
 

 


#24 scuba

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Posted 27 September 2015 - 10:00 PM

If you stop posting then I'll just have to email you.

You're not gloating and if someone feels that those of us who are doing good are gloating then we should understand how they feel, support them and continue on. That is the name of this game, continuing on as long as we can and making the most of it. I have tremendous compassion for those who are not doing well and I also have some envy for those who have stopped treatment and appear to have won over this disease. None of us know for certain when things may turn for us one way or another or when then bus is coming around the corner, so we move on.

I just got my latest PCR , number four negative, that's one year consistent. 100mg Sprycel does the trick. Lower dose didn't work. So maybe I can't stop or maybe in another year or two if it holds I can try. Dr even said I could try now but better to wait if I can tolerate it. I'm at peace with where I am, so I'll stay the course for now.

Best of luck to all

 

Great to hear on your continued remission. You seem to have solved the side effects issue you once had with Gleevec.


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"


#25 AllTheseYears

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Posted 29 September 2015 - 08:03 AM

I appreciate reading about all the experiences on this journey.  Even those of us who are in trials or participating in personal cessation journeys are trying to pave the way for better experiences for all CML survivors in the future.  None of us who have had this dreadful diagnosis at any point in our lives has escaped suffering, especially in the beginning of our TKI treatments.  (Also, I was very sick with CML when diagnosed well into the disease.)  I think there's plenty of empathy and sympathy on this site for survivors in any phase of treatment. As it should be.

 

I have taken Gleevec for 13.5 years. Only now, because of the pioneers participating in clinical trials (finally in America) have I gained the courage to embark on my personal cessation, under supervision of my oncologist.  (Truthfully, it's he who finally feels comfortable with the idea.)  I was PCRU for a decade, yet all that time I still scrambled to get Gleevec (you know the insurance/mail order nightmares) and pay for it (out a huge amount of money - much from job loss -  despite insurance). I dealt with nausea, skin and hair problems, loose bowels, emotional setbacks, unending fatigue, on and on. It wore me down. At any time during the last 13-plus years,  I would have rejoiced to learn of testimonials from CML survivors who were in personal and clinical trials. Only now are these happening with positive results!  I think these important trials eventually will produce new, less stressful protocols for other survivors and provide hope that eluded most of us before now.

 

The "Goodbye TKI" process goes beyond personal gain. ( I'll admit, though, that I selfishly hope cessation will work for me.)  I think we all should celebrate and support anyone exploring this new frontier. We all might benefit.    



#26 nsharavana

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Posted 29 September 2015 - 09:10 AM

dear alltheseyears..please keep us posted and updated on your progress of cessation.

 

best of luck for TFR success..god bless

 

sherry



#27 tinman1939

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Posted 29 September 2015 - 10:19 AM

Great post, Scuba.

 

I am thrilled to read about your fantastic journey, and that of others on this board. Please keep documenting your experiences. Doing so gives us all hope for a better future.

 

Best wishes.

 

Wayne



#28 PhilB

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Posted 30 September 2015 - 06:32 AM

Please do keep posting Scuba.  As well as being a great place to hang out for the regulars, this site is such a magnificent resource for the newly diagnosed that it needs to reflect the fact that whilst some do struggle, and those struggles should never be forgotten, the great majority do well and some even offer hope of coming out the other side.  As an irregular visitor now I can't claim to have read all of your posts, but those I have read have certainly never smacked of gloating - although I may have caught you once or twice poking with a stick some people who were far too scared of the disease to want to consider going your route :D

A quick look on google maps shows a bike trail running close to MD Anderson.  Can you park out of town then cycle in to avoid the parking?



#29 Tedsey

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Posted 01 October 2015 - 09:09 PM

Don't be silly, Scuba, this forum is for everyone's experiences. While I personally feel I may never be able to stop my TKI, I'm happy for everyone who has the courage to try whether successful or not. 

 

You may be a little over-enthusiastic in telling some long-timers on here that they are probably cured, but I think, on the whole, everyone takes it with good humor and in the spirit in which it is intended!  ^_^

 

We're all here for each other on this site and that is what's important after all.

I agree with Pat.  Please keep posting!  This is a forum for everyone.  We can choose what we read and what we don't.

 

All the best!

 

Tedsey



#30 markandelly

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Posted 06 October 2015 - 09:05 AM

thanks to Trey I learned to search on the word "cessation" ... its going to show us as new members but Marks been  on gleevec since 2005.  we will study every word that everyone has written.  anxiety is ruining his (OUR) life .  at recent onc. appt. she suggested he stop the gleevec and try sprycel .  he remembers her saying she would start him at 100 mg. and adjust as needed. we are in limbo of not knowing what to do.  I believe he's ready to quit taking the drugs.  almost 10 yrs undetectable.  when he went to 200 gleevec for a year(?) the 3rd or 4th pcr showed .02 I think(?!?)  anyways the onc said to go back to 400, now he's back on 200 but at the verge of "CESSATION" without benefit of clinical trials etc.  I truly got the feeling from our onc that she could grab him back into remission if the numbers started going back up.

please do not stop posting, these boards got us through the first year or 2 and now at year 10 they are again

thanks



#31 p.a.m.

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Posted 12 October 2015 - 12:18 PM

Congratulations Scuba! I enjoy reading your posts, and have gotten so much positive energy from them. Your story, like you, is unique.  Never stop being yourself, and continue to post.  Those who don't like it can just choose not to read it.  Write on!!

All the best to you.  

Lisa

I agree with Lisa.  Any information that you find relevant I hope you share.  I hope you'd share via email if you are ever asked to stop.  Healing Journey of health to all in whatever manner it can be obtained.


Dx: 04/2007 WBC 265,000

Tx: 2007-2014 400mg Gleevec

      2014-2017 100mg Sprycel for 4 months, repeated infection dose reduction 50mg





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