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#1 scuba

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Posted 02 January 2012 - 03:08 PM

cortes_banderas.jpg

Interesting resemblance - no?

2 points to the one who names both men:


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 CallMeLucky

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Posted 02 January 2012 - 03:51 PM

Antonio Banderas and Jorge Cortes.

I guess there is a little resemblance.

Not sure how I feel about Puss In Boots treating CML.


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%
 

 


#3 scuba

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Posted 02 January 2012 - 04:11 PM

Correct!

... I think of Cortes as Zorro ... swinging and slashing at CML.


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 pamsouth

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Posted 02 January 2012 - 05:10 PM

Hum Scuba,  The TKI are stilling only killing on the PH+  bottom level.  They haven't even touched the ancient mother stem cell, can't even get close to her.  The TKI are far from a cure!!

Pam South


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#5 CallMeLucky

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Posted 02 January 2012 - 06:42 PM

Puss In Boots does the same thing, lol

pamsouth - actually depending on the definition of cure you look at, TKI's for many are a cure.  Semantics not withstanding, I appreciate what you are saying but I think it is helpful to recognize the upside of TKI drugs.

My father in law was just diagnosed with a Stage 4 glioblastoma - there is no cure, there is no way to keep it from progressing, the best we can hope for is to slow it down for a couple of years.  There is a sharp contrast between his prognosis and mine.


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%
 

 


#6 pamsouth

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Posted 02 January 2012 - 10:46 PM

Lucky,  When you put it that way, I feel very luck to have Gleevec.  I have survived 6 years and am doing well even though it is not a cure, I am still alive and well.

I guess I just keep thinking where is the cure.  Actually when I was diagnosed in 2005, my sibling were checked and two of them were a match.  But I was 57 and the doctors thought at my age I had a better chance of survival on Gleevec then a transplant.  My siblings are older now and not well.  Sometimes I think I missed the boat with the transplant, but who know, transplant is pretty risky and you need a lot of care for about a year and can still have even more problems then you had before.  However I have met other that have had transplant an have been cured for over 10 years and are doing well.  Then there are many who did not survive, so It is a toss up.

Thanks for reminding me,

PamSouth


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#7 Tedsey

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Posted 03 January 2012 - 04:37 PM

Dear Pam,

I hope we all have enough time to show that the drugs beat the SCT odds by far.  Right now it is too soon to tell.  Our drugs need a little more time out there.  And of course, they need to learn how to trump drug resistance.  I just hope and pray no major side effects come up, like heart failure after 20 years or something horrible like that.  I always wonder by shutting off certain proteins what havoc it may reek on some biological functions.  But again, only time will tell.  I hope it is minor though, like acne or weak skin.  That is totally worth it.

My intuition says you did not miss the boat for the transplant.  Your life is likely prolonged because you didn't have one.  I see it as an absolute last resort for CML and a very risky procedure for anyone undergoing it.  I know of too many stories where it fails and people die horrible deaths (even just from chemotherapy complications) where if they just let the cancer go, the patients would have lived longer.   And some suffer the rest of their lives with debilitating GVHD, and a host of other issues also due to the chemotherapy (ex. artery blockage).  And that shortens their life too. 

But God bless everyone who had no choice and is still alive and kicking out there.

I wish you a long life on TKIs.  No regrets!

Teds



#8 Tedsey

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Posted 03 January 2012 - 04:58 PM

Luck,

I am so sorry to hear about your father in law.  It makes me so sad that with so many cancers, it is in the more advanced stages before it is even detected.  And, of couse, there are many that medicine cannot help.  We have to do better than that!  I have decided to study chemistry.  Well, I don't think I am going to save the world with chemicals, but it is a good foot in the door to research.  At least I won't be able to say I didn't die trying.  If anything, it will help put the kids through college and give me something more to live for (because it will probably take me 20 years to complete just a bachelors). 

I hope for a miracle for your father in law.  And I hope your wife is doing OK.  Cancer sucks!!!!! 

Peace and blessings to you and your wife,

Teds



#9 pamsouth

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Posted 03 January 2012 - 08:20 PM

Tedsey,

I suppose you are probably right'

>My intuition says you did not miss the boat for the transplant.  Your life is likely prolonged because you didn't have one. <<

My mind still as this  picture of this lady I met that was cured of CML & it has always stuck in my mind. 

When I was Diagnosed at age 57 (july 29, 2005) of CML.  This onc nurse brought her mother in (at one of my appointments) for me to meet.  Her mother had a BMT from her sister 10 or 12 years earlier, and her doctor said she was cured.  At the time I met her she was about my age (maybe a little younger, early fifties) so she would have been in her 40's when she had the transplant.  The daughter had taken care of her mother night and day for a year, and kept everything sterile for her mother.  Later the daughter decided to become a nurse because of caring for her mother after the transplant.  It's just, well her mother, looked so wonderful, no problems, no drugs. CURED!!  That has forever stuck in my mind. 

But you are right what are the odds of that happening, Cured from a BMT donor).   How many people have someone to take care of them like her devoted daughter.  And yes even with her devoted daughter and a donor match from her sister, it could have turned out badly. But she did take the risk, and she did beat CML.  Of course that was before Gleevec and she was younger.

I am sure BMT at age 57 would have been much riskier, then the TKI and of course the doctors kept saying I would live long enough to see a cure, however that has been 6 years ago, and we still do not have a cure.

But I will take CML over the terrible breast cancer my friend has.  Several chemo, the a 4 hour masectomy turned in an 8 hour surgery.  Then the skin died and a skin graft.  Then they had to take out the expanders as she has to have radiation, don't know if the cancer is under the breastbone or in the larynx.  Makes my feel kind of lucky to have CML with Gleevec over what she has.

At least so far, like you said we don't know what is down the road, long term side effect. I believe Gleevec was only in trial about 3 years.  I think Tasigna patent was 2007, not sure about Sprycel. I think most drugs are in trail an average of 10 years before FDA approval.

I know most do not want to know where they got the CML or blood cancers or whatever they have.  But do you ever think if we knew how we got it, we could prevent it.  I retired from EDS,Electronic Data System, that in 1982 General Motor purchased from Ross Perot.  We were taught instead of just putting out the fires, find the root cause of the fire.  So I guess it is in bread in me, to find the cause instead of just trying to put out the fire.

I am doing the Chronological Bible Study.  Back in the beginning of the creation of Adam and Eve they lived and average of  over 900 year or close to a thousand years.  The presumption was that, at the fall of Adam and Eve, (living in the perfect environment)  the vegetation/fruit of the land and air and environment was still good.  Just food for thought.

Pam South


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#10 Tedsey

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Posted 03 January 2012 - 11:17 PM

Dear Pam,

Well, as we all know too well, there are no guarantees in life.  I am sure BMT can cure some all the way.  But who knows why for some and why not for others.  I agree with you.  If we could find the source, we could find the cure.  But the variables are numerous and, I suppose, impossible to sort out.  Sadly, science still does not know enough about genetics or epigenetics, etc.  Nevertheless, CMLers are a minority in the general public.  It seems do-able because of that, but impossible for the same reason.  What could we all have in common that caused our bodies to support such mutations?  It is mind-boggling.  And I do not believe there will be a cure in our lifetime.  And not for lack of human intellect to do so.  But that's another story...there is no profit in cures.

Anyway, it appears we will have to be content and grateful with and for the development of the drugs that have successfully slowed down disease progression for most.  And pray that big pharma or scientists find it worthwhile to develop drug or gene therapy to completely halt CML's progression in all.  We have to be OK with that. 

But I like to hang on to the fantasy that if science can really understand what is going on at the molecular level and really and truly determine what a leukemic stem cell is and how it works, then maybe we shall find the root cause.  But it will look much different than something as simple as too much radiation, benzene exposure ,or ingesting too many pesticides.  And I would like to read more about why some people, who are exposed to the same toxins or harmful elements, die old and unscathed.  Can science get to a point where it can modify anyone's genes to become "super genes"?  And will all humans live to 900 like our Bible heroes?  I suppose that there will always be a mutation somewhere waiting for the right time to keep us mortal.  No one lives forever.  But it would be great to receive the gift of becoming elderly.

Here is to growing old,

Tedsey



#11 pamsouth

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Posted 04 January 2012 - 11:09 AM

Tedsey

I noticed on your profile you started out on Gleevec & switched less then a year later to Sprycel.

I was wondering how you were doing on Sprycel? 

I have been on Gleevec since 2005.  I have been paying attention to patients switching around drugs. As my previous onc had mentioned switching to a newer drug like Tasigna.  Am in the middle of switching on oncologist so not sure what is coming down the pike?

I don't switch has the most side effects.  Some Tasigna patients complain about when they have to take the drug QT and Rashes.  Seems like Sprycel patients complain a lot about fluid and some even being hospitalized to take the fluids off the lungs.

So sorry if I missed your story or archive.

Just wondering?

PamSouth


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#12 Tedsey

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Posted 07 January 2012 - 04:48 PM

Dear Pam,

So far so good on Sprycel.  I don't notice I have any side-effects (it is a toss up if the bad skin is from the dasatinib or loestrin-the pill).  However, my PLT have stayed around 20-30K for about 2 years.  Nevertheless, I have had no trouble with clotting or with bruising.  Unlike many of us here, when I was dx, my PLT were high, but not near 1,000,000.  I think that is why I ran for 3 years to doctors for weight loss and they could never find anything.  CML often starts with high PLT.  Mine started with high WBC seemingly overnight (well, within 8 months of my last CBC done to be eligible for life insurance---in hindsight, we should have taken out much, much more--my husband thought I was the one that was going to live the longest). 

My present hem/onc wanted to switch drugs because my last 3 PCRs with her were flat.  I got a much better response with Sprycel (within 2 months I had a CCR).  I am not yet MMR after 16 months.  However, since my first PCR was unquantifiable and I didn't have a reliable number until after I was diagnosed 6 months (and changed oncs--my first one was a nutcase, and more worrisome, she sits on the advisory panel for the NCCN CML guidelines!!!!!!  After a few weeks, she said she would NOT allow me to take any other TKI but Gleevec, and she definitely wanted to give me a SCT within 10 years!!!  Boy, I am so glad I found this board.  Clearly this onc does not pay attention to what she signs her name to or follows the guidelines (after 3 months, she told me I was doing poorly and the CML was still out of control because I was not at zero!!---it appears she personally "knows better"----I ran for my life and I am so happy I did).  So, I may actually be MMR or very much on the edge.  Therefore, I am not worried about technically not making the MMR in 1 year on Sprycel guidelines.

I chose Sprycel because I had such trouble with Gleevec.  I had such severe anemia, I couldn't walk across the room or take my babies to the park.  I needed painful and dangerous shots to boost my RBC and blood transfusions.  And I always had to be shot up with more horrible drugs so the donor blood wouldn't kill me (found out with my first transfusion that my body doesn't like other people's blood too much--I had anaphylactic shock--good times).  It was cured within weeks of taking Sprycel.  I got my life back.  I canot express how grateful I am.  Tasgina seemed very hard to take and it is chemically similar to G.  So, I thought Sprycel would be a better choice overall.

Hope you are doing well and feeling good.  Good luck with the new onc.  Sorry for the long answer to a short question.  I you change, hope S brings you immediately to zero! 

Teds  



#13 pamsouth

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Posted 07 January 2012 - 07:37 PM

Teds,  Thanks for sharing.  Every little bit of info is helpful as everyone has a little bit different story.

Yea I know about the crazy oncologist.  Glad you had the good sense to change.  Some are just to scared to make the move.

Hum, I always wondered about blood transfusion, I mean, in what way are they dangerous?

Thanks for the info on Tasigna and Sprycel.  It bothers me a little when I hear some patients on Sprycel have to go in the hospital to have the fluids removed from their lungs.  But then again other patients on Tasigna deal with the QT and the rashes.  Sounds like you are doing well on Sprycel after trying the Tasigna which is chemically like Gleevec. That is a thought if Gleevec is working and Tasigna is like Gleevec, then Sprycel being a different chemical would be good choice.

When DX my platelets were up over 2 million and my white cells never got over 21 thousand.  Strange how CML effects people differently.  However all my white cells were bad, as Gleevec  took them down to a dangerous 1.7 or just over one thousand.  Don't think I would do that again, was in the hospital for a few days, then stayed in isolation a few months and sterilized everything.  Kind of scares me to look back at that.  However the ideal was to get rid of as many bad cells so the good one could populate. Still a little scary, lot of things could go wrong.

 

Come to think of it my RBC run on the boarder line, as long as they don't get any lower. 

Still a little upset with my primary doctor as my labs in 2002 had high platelet count and granulytes were slightly off but primary doctor never ran another CBC until 2005, even though I went to her annually.  Back then I didn't question the doctor and never asked for my labs.  I don't know if the insurance has guidelines about how much your counts have to be off to run another lab.  But she could have mentioned some of lab count were off. I would gladly have paid out of my pocket for another CBC,  wasn't that much money.  Now I always get my labs.  Even get my husband labs, sometimes his doctor fails to mention certain things.  Now we ask for my husband labs, and his doctor won't mention everything on the lab that might be off, he will say I am not worried about it.  Just the same when something kicks out wrong on the labs, high, low, whatever, I think the doctor should have a moral obligation to tell the patient. Not so, I guess!

Thanks for Sharing

Pam


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#14 Judy2

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Posted 07 January 2012 - 08:45 PM

Hi Pam South,

I had blood transfusions last Feb. and never had a problem. I was given one Tylenol as my temp. started to go up but the Tylenol took it right down. Compared to everything else I've been through, for me, it was a pretty simple procedure.

Judy



#15 Tedsey

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Posted 08 January 2012 - 12:18 AM

Sorry if I scared you about the blood transfusions.  I react to medicines, procedures, etc. much unlike most humans.  I am afraid I am some a hybrid of some sort of alien species (unfortunately not superior).  Anyway, blood transfusions are not harmful for most.  Before I had my first one, my onc's nurse told me there was a chance in a billion-gazillion that anything would go wrong, (funny she said this, because I wasn't even nervous).  So, there you go.  I am an oddity.  No worries if you ever need one.  I already was the one in a billion-gazillion.  You are off the hook.  And let's pray you never need one.

Anyway, for the record, I was never on Tasigna.  I was given the choice, but requested Sprycel.  Totally understand what it is like to live with low blood counts.  Also, I understand how you feel about your doctor ignoring your labs.  What a shame.  A shame in my case too.  Whatchagonna do?  But at least the CML was caught in CP and presently, we are doing well.

Good health,

Teds



#16 pamsouth

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Posted 08 January 2012 - 12:40 AM

Teds,  What made you decide on Sprycel?

PamS


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#17 Tedsey

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Posted 13 January 2012 - 09:14 PM

Ease of use; more different than T.






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