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My experience at the Mayo Clinic


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#1 Johnmontoya923

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Posted 25 July 2012 - 02:05 PM

Hello to all,

As some of you know, I was recently Dx. with CML, and I have been struggling with the thought of it ever since. Many of you have helped put things into  perspective for me, so I can see some light at they end of the tunnel for me. ( to put in a nut shell )

My wife and I woke up today to get ready to head out to the Mayo Clinic. We were there before 7am, My lovely wife has been preparing me for weeks not to get my hopes high. I feel like most of you or all of you, I needed a second opinion, I guess you can say im still in deniel or Im in a fantasy dream that this is only a temporary thing, and Im going to get healed.

Well, as you know, that wasn't the case today. The so called Expert, Harvard Grad, helper of the Gleevic discovery said the exact same thing as my oncologist, my wife, you-tube, the internet, and anything else I can get my hands on, has been saying.

   

"THE STANDARD OF CARE FOR CML IS TO TAKE IS THE PILL"

Thanks for listening.

     Jon



#2 ChrisC

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Posted 25 July 2012 - 03:36 PM

There is a saying, If you want what you have not got, you must do what you have not done.

You are bigger than the pill, John, and nothing will change that, if you know what I mean!

Your health — big picture — requires that there is a sacrifice, though we all hope that you are one of the fortunate ones with a barely discernible change in your life with the addition of a TKI.

Don't you agree?


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 Rissa

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Posted 25 July 2012 - 03:40 PM

Life will be surreal for a while, but it will get better.  Just keep coming back here where people will listen, share laughs, share tears, offer advice.....   When I was first diagnosed 15 months ago, I felt like the whole world was inside a snow globe and I was on the outside looking in.  And where I was at was completely empty and dark.  It was an awful feeling. I think all of us know what you're going through right now.  But you will get past this stage and get used to this "new normal".  You'll even find that some days you will forget you have CML.  I know that's hard to believe right now.  Just give yourself time and take it easy.  Try to relax, pamper yourself, watch lots of comedies and laugh as much as you can. 



#4 Marnie

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Posted 25 July 2012 - 03:44 PM

Jon. . .this is a good thing.  If you look at the risks and outcomes of a bone marrow transplant, you can see why transplant is used as a last option.  As a person who spent 45 years rarely taking even an aspirin, I have gotten used to taking my TKI each night.  My life, fortunately, has returned mostly to normal.  The side effects (for me) are annoying, but not life shattering. 

Marnie



#5 CallMeLucky

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Posted 25 July 2012 - 04:12 PM

Hey John,

Glad you got your second opinion.  I can appreciate the wanting to hear something else.  I remember the first few weeks, I kept waiting for the phone to ring and for someone to apologize and tell me this was all one big screw up and I was fine, I didn't have CML.  As you can see that never happened (of course if it was a mix up that would just mean someone else had CML).  It became more final for me when I went for my second opinion at Memorial Sloan.  I had to laugh because I also had the expert Harvard grad, panelist for NCCN guidelines etc.  Basically there was no conceivable way to look this person in the face and tell them they were wrong, that would just be blatant denial and that would be silly.  So I did what they told me, two years later I'm alive and well and the most sensitive test available for determining if someone has CML (a PCR test) is undetectable for me.  All in all I can't complain too much, but that doesn't stop me from complaining

You know, I don't want to be all glass half full on you, but in a lot of ways you kind of got good news at Mayo.  You could have walked in there and they could have told you the original work up was wrong and you actually have AML and will need a bone marrow transplant.  I guess it is a matter of perspective isn't it?

You got dealt a crappy hand, no doubt about it, but if you take all possible outcomes into account, you may find you're still on the better end of the stick.

Be kind to yourself and those around you, this should be the hardest part........


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 Johnmontoya923

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Posted 25 July 2012 - 04:16 PM

Marnie,

So true! thanks



#7 Johnmontoya923

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Posted 25 July 2012 - 04:17 PM

Thanks Rissa!



#8 Johnmontoya923

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Posted 25 July 2012 - 04:19 PM

Chris C,

Yes,



#9 Johnmontoya923

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Posted 25 July 2012 - 04:25 PM

Call me Lucky,

Now I know why they call you lucky, lol

Thanks for your response,



#10 Susan61

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Posted 25 July 2012 - 04:25 PM

Hi Jon:  I have not been on here to follow everything lately. Looks like I missed a lot of newcomers.  I did read your posts, and I can see this is all very new and shocking to you.  This is how we all were when we were first told.

You can read some of my old posts, and it might help you to see that we can live with this disease.  I was diagnosed in 1998, and I am still here doing very well. You said standard care is to take the pill.  I did not have the pill to take back in 1998.  All I had was the old conventional way of treating Leukemia which was giving myself shots everyday, and feeling so sick that I could not function.  I had to stop the shots of Interferon and another drug that they added to the Interferon.

I was doing 2 shots of two different treatments everyday.  I finally had to stop it because it was destroying my liver.

I did the Hydrea for months before I found out about Gleevec being in a clinical trial.  I was tested and examined everywhere to get ready for a BMT, but I knew it was not a full proof cure for everyone.  I chose the Gleevec. I will be on Gleevec for 12 years this coming Oct.  Been living with CML for almost 14 years.  Leukemia is not the dreaded Death Sentence like everyone thinks.  They are learning more and more about the treatment of CML everyday. You will do well, and as you see more and more results of these cancer cells being destoryed and you see better results in your blood tests you will be glad you took the pill.

     You said your wife is the strong one who holds it all together with all the problems she has to deal with.  I have CML, but I am the one who holds it all together for my family because this pill has gotten me through it all so I can function to do all that I do.  My husband has been my loving support through all these years, but he still depends on me to keep it all together and to handle all the things that come up.

    You and your wife will work together to take care of everything, and you will be able to do it. Your wife sounds like a beautiful person who will get you through each day as you kick CML right in the behind.

God Bless You

Susan



#11 CallMeLucky

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Posted 25 July 2012 - 04:31 PM

Ha Ha, it's actually a backronym for CML.  My attempt at sarcastic humor.  I find myself being a little more philosophical these days and pondering if I am someone who has a good life with a lot of bad luck or a bad life with a lot of good luck.  Most days I think it is the good life........


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%
 

 


#12 Happycat

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Posted 25 July 2012 - 07:05 PM

Hi, John,

I think I missed the welcome wagon, too, been busy.

I will echo Lucky a bit. When I was dx'd some 15ish months ago, they thought I HAD an acute leukemia and was Ina crisis. They were talking about pumping me full of chemo (the real stuff, TKIs are not chemo, nowhere near it). A few hour later, they came in  and said because I was at risk for having it spread to my brain, they might need to   puncture my spine and bathe my spinal column in chemo, too. Super cringe-worthy!

Then they came in a few hrs after that and said, we have the answer!  We were wrong, you have CML and all you have to do is take this pill once a day.

Well, hey, I LIKED the sound of that in comparison!  I really DID feel lucky!  And I gotta say, sitting in the oncs waiting room over the next weeks and months, seeing the really sick leukemia patients, I feel even more lucky today. Yup, it's all a matter of perspective.

Anyway, allow yourself to go through the grieving process (I think it is a grieving like process) and within months, you will likely feel better about it all. You don't have to be happy about it, just adjust to the new reality.

HTH,

Traci



#13 CallMeLucky

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Posted 25 July 2012 - 07:08 PM

John,

When you have a few minutes you should read this article in Smithsonian Magazine about Brian Druker and the development of Gleevec.  I think this should be required reading for all newly diagnosed patients and hopefully it will provide some perspective on TKI drugs.

http://www.smithsoni...nst-Cancer.html

all the best


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%
 

 


#14 Susan61

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Posted 25 July 2012 - 07:27 PM

Hi Lucky:  That is a very good article, and the funny thing is that when that article was in the paper someone sent a copy to my mother right at the time that I had failed the Interferon.  My mother told me to look into it, and thats when my Oncologist told me he did not have much faith in doing the trial, but it was up to me.  The rest was history.

Glad you referred to that for others to read.



#15 0vercast

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Posted 25 July 2012 - 10:30 PM

It's true what they're saying, the work has already been done by those who've developed these TKIs.  To be honest, the "take the pill and hope it works" treatment was hard to accept at first and I was tense all the time, but that's how it goes.  Take your meds, eat well, manage your health as best as you can otherwise, and pretty soon you'll relax and stop dwelling on leukemia everyday.  I'll admit, daily leukemia research didn't help me relax one bit.  That might work for some people, but not me.



#16 Susan61

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Posted 26 July 2012 - 10:47 PM

HI:  Glad you said that about the Daily Leukemia Research, and not helping one bit.  I did that also in the beginning, and it just made things worse for me.  What works for some does not work for all.  I like to know about all the latest things that are becoming available to beat this disease, but if your not sure what you are reading you can absorb this information in a wrong way.  We are all different in how we handle our disease.



#17 Johnmontoya923

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Posted 27 July 2012 - 11:06 AM

To Tracy and Susan61,

Thanks so much for your response to my thread, it has definitely been shocking and overwhelming these past almost two months. I still feel sick every morning from taking the Sprycel, but, as the day goes on, I start feeling better.

Blessing to both of you, and thank you again

jon



#18 Johnmontoya923

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Posted 27 July 2012 - 11:08 AM

Overcast,

So, So, True!

thanks!

jon



#19 Johnmontoya923

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Posted 27 July 2012 - 11:10 AM

Thanks CML,

Will do



#20 LivingWellWithCML

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Posted 27 July 2012 - 12:56 PM

You nailed it, Overcast. I was consumed 24/7 for the first few months post-dx, but it's true -- the TKIs do the work.  CML research did nothing but drive me into an absolute frenzy when in fact, I just need to take Gleevec 400mg daily and control what I can control.  Trey said this best in another post as well ... don't give much thought to how you might have gotten CML - I agonized over that for a bit and it was worthless.  It's basically a mystery ... *shart* happens, period.

The standard of care in chronic phase is incredibly simple -- take TKIs as prescribed, 3-month blood draw and test results, then repeat (maybe another bone marrow biopsy - depends on the oncologist).  And as long as we respond well to a particular treatment, then that's how it goes.  Just watch the FISH and PCR numbers and keep living life.  Whew.

At one point, I thought about seeking out someone like Dr. Druker in Oregon, but I've been responding well to Gleevec 400mg and feel totally healthy, so there really is no point in flying cross-country when all Dr. Druker would do is draw blood, review the PCR results, and if everything's good, repeat.  Heck, I could do that myself if I had a PCR machine and knew how to prime the test. :-)

Now, if something changes or my case gets unusual ... then sure, I'm going to research and potentially escalate my treatment team, but for now, "THE STANDARD OF CARE FOR CML IS TO TAKE IS THE PILL".

Someone told me early-on during my heaviest periods of anxiety to just "chill and take the pill".  I got the pill part figured out ... and I've made considerable headway on the chill part in my 15 month journey.  Oh, and a quality glass of red wine in the evenings is also a requirement for me.

I am sorry you are dealing with this diagnosis, cause it's a big shock -- everyone here totally gets it, cause we're on that journey with you as well.  But as you start seeing a positive response to treatment, I assure you that the sky will stop falling and life will resume.

I'm an avid runner, which is how I caught the disease (slower running was really my only symptom, wow).  So I ran a 5K race in 27 minutes literally hours before I was diagnosed, and exactly 1 year later on my cancerversary, I ran that same 5K race in 21 minutes -- that shows how INCREDIBLE "the pill" is.  Yeah, I trained some and ran hard, but it's "the pill" that's doing the work and allowed my bone marrow to recover and function at a high level, allowing me to zip along in a 5K race at a fast pace.  What a cool way to monitor my treatment in between blood draws.

Anyway, reach out to this group as you continue soaking things in and as you move forward -- you'll see how great many of us are doing and it will give you a ton of hope.  I promise!


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg





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