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The Tedsey syndrome


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#1 scuba

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Posted 07 July 2011 - 04:48 PM

I must have a lot in common with Tedsey.  Maybe we have common ancestors - or there was some hanky panky going on in the family we don't know about whilst they were in Europe.

I am on 20mg. of Sprycel - for six weeks or so now.  My ANC is holding steady at 0.72 (CBC is now done every other week - so that's progress).  But my platelets are dropping.  I am now at 100 - and if I go below 100, the docs get nervous.  But after following Tedsey's path - I won't worry until I get to 50.  Red blood is below normal, but steady for months now (RBC = 3.4).

I just can't believe that only 20 mg. Sprycel is so effective at nailing my Neutrophils and now Platelets.  They took blood for a FISH/PCR test to see if the low Sprycel is working.  FISH was already zero - so I am very interested in the PCR level.  For those of you who quibble about going from 0.001 to 0.002 PCR- ((#*)(#$*&$@_#)_)_).  I will be thrilled to go from 45% to 10% (IS scale).  I have been living at this high level for over a year.  And if it were not for the testing, I would not know I have CML.  No symptoms, no side affects.  Only the sore throat and dry mouth when my ANC was below 0.5.

I am up to Curcumin at 8 grams equivalent a day as per Dr. Aggarwal.  Seems to be some correlation with Curcumin 'enhancing' the effect of Sprycel.  We'll see what the PCR shows.


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"


#2 ChrisC

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Posted 07 July 2011 - 04:53 PM

Thanks for the update, Michael. Wishing you well.

Gotta wonder now, though: what would the situation be (sorry) if you were to stop the curcumin for awhile? That is the variable that hasn't been changed in your equation.

Just wondering.

Carry on!


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!

 

 


#3 scuba

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Posted 07 July 2011 - 05:35 PM

I take the Curcumin after I read Dr. Aggarwal's research.  There is evidence that Curcumin interferes with bcr/abl cells and causes apoptosis.  Dr. Aggarwal provided references that I can list here for those interested.  And in colon cancer trials, Curcumin is documented as enhancing Sprycel.

It is my belief that my taking Curcumin is what enabled me to stay off a TKI for a long period while my blood system recovered gradually.  It is my hope that the Sprycel I am taking is reducing the chromosome load (t(9;22) P210) while the Curcumin keeps the Leukemic progenitor cells very low so that my normal system can recover.  I am somewhat encouraged in that my Neutrophils have stabilized (if 2-3 weeks constitutes stable).  

I believe that my system is too sensitive to Sprycel and myelosuppression is a real problem for me.  A small amount of Sprycel along with Curcumin is my recipe for getting over the hump.

The only good news out of this - is that I feel normal.  No side affects whatsoever and no impairment other than Platelets do seem to be getting low.  I suspect that if my Platelets get too low, Dr. Cortes will take me off Sprycel again until I recover.  But I will stay on Curcumin as I have done since February.

Has anyone had their platelets drop using Sprycel, but then they recover?


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"


#4 Pin

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Posted 07 July 2011 - 06:47 PM

I'm just wondering - my doctor said that the drugs just target the leukemic cells - why is it then, that sometimes people lose other, I'm assuming "healthy cells as well?


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#5 Guest_billronm_*

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Posted 07 July 2011 - 08:11 PM

Dear Michael,

It's been 8 months since I went on Sprycel. Every month my platelets are getting lower and lower. I'm anemic now which doesn't help with the fatigue. I was taking 100mg a day now I take 100mg 1day and 50mg the next alternating every other day. I just had bw Tuesday. I sure hope this works because he was going to put me on Tasigma and I don't want to go on it. My appt. is the 21st I'll let you know how I make out.   Good Luck Billie



#6 scuba

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Posted 07 July 2011 - 08:26 PM

http://bloodjournal....9/1884.abstract

Apparently platelets are a problem with Sprycel.

I probably will go off Sprycel if my Platelets fall much below 100. 

In fact - I know I will go of it since I am in control of my care.

Since I have been off all TKI's for about 5 months and then back on.  I don't have a problem with going on and off in order to manage this disease.  It is just a fact of life now.  I suspect the Curcumin will enable me to go off Sprycel and I can once again have a normal life with normal platelets and Neutrophils - albeit fewer of them and go many months symptom free and "healthy" as Curcumin slows the disease.

And then I will have to go back on Sprycel again to beat back the disease.  I am o.k. with that.  The great news - is it only takes a few weeks to get everything beat back and then I have MONTHS for it to build up.

The key is if mutation occurs that causes blast crisis.  Who knows.  

It is what it is.


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"


#7 Pin

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Posted 07 July 2011 - 08:40 PM

Ohhh - thanks for that - I do hope it gets better for you Michael.


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#8 Marnie

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Posted 07 July 2011 - 10:26 PM

My platelets have actually gone UP since starting Sprycel. 

It's very interesting to follow your progress.  



#9 Guest_billronm_*

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Posted 07 July 2011 - 11:10 PM

Marnie You're home early,

I just sent you an e-mail

                                                       lol Billie



#10 Tedsey

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Posted 08 July 2011 - 09:35 AM

Nice to see you posing again Michael.  "For those of you who quibble about going from 0.001 to 0.002 PCR- ((#*)(#$*&$@_#)_)_)."  My sentiment exactly.  Just kidding, my wish is for all of us to panic over that.  Wouldn't that be great?  Sorry to hear you are having a tough time with the Sprycel dose.  Sorry to hear you have my syndrome.  Anyway, I am doing well bouncing from PLT 20-30,000.  Whatever PLT I do have are clotting normally.  However, I get petechie occasionally my neck and chest and any time I scratch a mosquito bite.  But that may be normal.  Who knows?  Don't quite know what normal is anymore.

I feel for you with the frequent CBCs.  Been there, done that.  Hope it will soon be in your past as you go to every 3 months.  My HGB has improved (let's say I am no longer 6 and below).  Still getting the mouth sores, but with some personal research and the blessings of my onc, (well sort of---at least the pharmacist gives the OK, but the nutritionist warns about interactions with chemo---but since I am not on chemo, I think I will not heed her "unfamiliar with TKIs" response), I have taken matters into my own hands.  The sores are sooooo much better.  But it is still too soon to tell if the supplements I take are doing the trick (top secret---just kidding, but I don't want to influence anyone without their onc signing on).  Do you still have mouth sores?

Always wishing you the best,

Teds

P.S.  Do you take the 8mg of curcumin all at once?  What brand are you taking?



#11 PAMKELLAHER

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Posted 08 July 2011 - 10:15 AM

Hi Michael,

I've been on Sprycel for about a year now.  I had trouble for about the first 6 months with low blood counts (Not nearly as low as you and Tedsey)

anyway my onc did all the normal things stopping the medication, cutting the dose, alternating does etc.  In Nov 2010 my FISH was at 35%.  Alternating between 70 and 100 my FISH went down to 4.6% in Jan 2011.  I then went on 100 mg daily.  All my counts gradually came back up except the platelets.  They dropped as low as 60 but she wasn't going to do anything unless they dropped below 50.  Well my FISH in May came back at 2%.  She kept me on 100 mg and my platelets are slowly coming around and last week they were up to 112.  Just wanted to let you know they can recover!  Go for my next FISH next week and am hoping for 0%.  Like Tedsey I am a turtle!  Take care and hope everyone is doing well!  I read the posts all the time just don't post that often.



#12 PAMKELLAHER

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Posted 08 July 2011 - 10:28 AM

Oh I forgot to mention originally on Sprycel my FISH went from 89% down to 10.5% after the 1st three months.  With stopping the medication and dose reductions because of low counts the FISH in Nov came back at 35%.  That's why I wanted to stay on the highest dosage possible even though low counts.  It seems to be slowly working as I said my FISH was at 2% in May.  Anyway just a little additional info.   Maybe all your body needs is the 20 mg.  I had thought I would do well on the lower doseages as I am not a very big person but apparently Sprycel doesn't work that way!



#13 scuba

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Posted 08 July 2011 - 12:23 PM

Thanks Pam for the feedback.  Dr. Cortes told me he has patients that have gone into complete PCRu with only 20mg Sprycel.  He said it is very individual.  What he cares about is the trend.  If my bcr-abl chromosome counts are dropping with 20mg. - then he believes that is what I need to get the results without myelosuppression.  But if I see that my blood counts increase, I will up my dose of Sprycel just to speed the process along.


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"


#14 scuba

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Posted 08 July 2011 - 12:41 PM

I take the 8 grams all at once most of the time.  Sometimes I take 6 grams in the morning and 2 in the evening.

But I am switching to

http://www.terrynatu...curamed-375-mg/

in order to increase bio-availability in order to avoid having to take so many capsules.  I am waiting for the order.

My thinking on the Curcumin is that it causes apoptosis of CML cells.   I am doing this to augment the Sprycel's affect.   I believe that without Curcumin, the 20mg Sprycel I am taking would be too little to have any affect.  It's my own personal experiment.  As it turns out, Curcumin is beneficial regardless for other things.  Read up on Curcumin's affect on Platelets.  With your low count, Curcumin may not be for you.  Curcumin is a natural "blood thinning agent".  Good for the heart.

As you have seen me write - it's all a crap shoot.  We all have to take control of our own care.  Oncologists are not magicians.  Trey is a magician, though.  I have seen him do magic with PhilB.


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"


#15 Trey

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Posted 08 July 2011 - 12:53 PM

Mikey said:

"Curcumin is a natural "blood thinning agent".  Good for the heart."

Only if you have plenty of platelets, which does not describe your situation (PLT = 100).  Low platelets plus blood thinners is not a good thing.  Be careful with this alchemy stuff.



#16 PhilB

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Posted 08 July 2011 - 01:24 PM

Trey is a magician, though.  I have seen him do magic with PhilB.

And believe me it was no easy job hiding in that bloody top hat.  I did quite like the rabbit costume though.  The real revelation was Lucky as his glamorous assistant.  Who would have suspected he owned such spangly tights?



#17 Marnie

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Posted 08 July 2011 - 01:44 PM

http://www.youtube.c...h?v=HVDK58ZoyuE

And here is Lucky cooking dinner after the show.



#18 Guest_billronm_*

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Posted 08 July 2011 - 02:11 PM

Marnie, where do you people find this stuff?  And you're a school teacher!      lol Billie



#19 PhilB

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Posted 08 July 2011 - 04:39 PM

I must admit that was my initial thought too.  Marnie just happened to have that link to hand?



#20 Marnie

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Posted 08 July 2011 - 04:48 PM

The world is a frightening place.  Google anything and see what comes up.  And, NO, that is not me.  My spangled tights are purple.

Marnie






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