30 replies to this topic

[Steve-o]

Hi CMLers:

First I want to thank all of you for allowing me to pour through this discussion sight over the last couple of weeks to learn more about CML as a guest.  The information has given me hope and allowed me to stay positive in spite of the diagnosis.  Trey - dude - you're like a CML encyclopedia.  Thank you for all your links and great insight.

My journey began on May 20 with a visit to my doctor for what turned out to be an enlarged spleen.  CT scan then blood work, then more blood work.  WBC count is around 265000.  No blasts.  Start Gleevec as soon as it shows up at my doorstep [Wednesday we hope].  Dr. Brian Druker is my new frickin hero.

I'm 47 years old. I'm married with four children.  Been in the grocery business for 32 years - same company.

Not sure how active I'll be on the forum, but definitely appreciate the resource and wealth of experience [CMLers with lots of experience is a beautiful thing!].

Thanks again,

Steve-o

[CallMeLucky]

Hello Steve - I'm sorry you had to join us here, but glad you found us and are getting something from the site.  I think we have all benefited greatly from it, especially at the beginning when we are most scared about the diagnosis.  It is good to talk with people who have been at it for a while.  You get the sense that there is the very real probability that you too will be able to live with this disease for a long time.

I wish you wellness and peace of mind and I hope to see you are the board from time to time to let everyone know how you are doing.

Best of luck..

[Trey]

Glad you found the information helpful.  I assume you saw this link:

http://community.lls.org/thread/2600

http://community.lls...?view=documents

[Steve-o]

Thanks all,

And thanks again for the links Trey.  My oncologist was impressed when I showed up for my appointment with the NCCN treatment playbook as a PDF on my phone.

Just got word from pharmacy that's sending me the Gleevec - insurance was approved - like I needed that stress too.  Will arrive FEDEX tomorrow so that I can start kicking this cancer's ass.

Maybe this has been said before, but maybe our CML theme song can be "Philadelphia Freedom."  Freedom from the ph+ chromosome?  OK, maybe it's a stretch.

Have a good day.

Steve-o

[hannibellemo]

You better hope Steve-o that I can get "Philadelphia Freedom" out of my brain before I go to bed tonight! 

Actually, I think it's a good idea, how many of you are singing it to yourself, right now? If you aren't you will be...I just planted the seed. I can be very evil!

Pat

[sdl722]

That's funny.  When I was first diagnosed in April, and understood what CML was all about, that song was constantly going through my head!  Haven't thought about it since the beginning...now I'll have to try to get it out of my head.

Completely unrelated, but I was also born in Philadelphia, although I don't remember anything since I moved away when I was less than a year.

[Steve-o]

"Oh Philadelphia freedom shine on me, I love you

Shine a light through the eyes of the ones left behind

Shine a light shine a light

Shine a light wont you shine a light

Philadelphia freedom I love you, yes I do."

Just in case you needed a memory jog. 1975 was a while back.....

[knoppl]

This is the one time I hope my brain fog kicks in! 

[jsmiddiebrush]

Hi Steve-o!  Sorry you have to be here....but welcome aboard.  It seems like you have a good attitude already!

I remember waiting for the first shipment of Gleevec to arrive.  With our insurance the co-pay would have been HUGE, so had to go through a big ordeal to get financial assistance from Patient Services Inc, then we had to get "authorization" from the insurance company, and "approval" to go through the speciality pharmacy, the PSI had to contact the pharmacy, then angels had to dance on the heads of pins....etc.

Anyway, I remember the day it arrived.  I was expecting....I don't know.  Something really special, like the fire engine would race up the street, sirens blaring, and Navy SEALS would run up to the door.  They'd hand deliver a Waterford vase full of Gleevec; each pill individually wrapped in white satin.

But no.  One day there was a Tyvec envelope in the door with a regulalr old  plastic prescription bottle with 30 pills.  Kind of a let down....

But good results overall!

Let us know how your treatment proceeds, we're here to help!

Joanne

[hannibellemo]

Joanne,

You do know how to paint a picture with words! Thanks for the belly laugh!

Pat

P.S. I have got to quit re-opening this post - that darn song gets me every time! Phil - a - delphia Free-dom!

[cousineg]

Hi Steve,

I suppose that you love painting. Take a break of reading medical topics and

go to that link: CMLer's portofolio

But If you like more music, then go to:

The march toward healing

Too much angels in heaven!

The battle for healing

Welcome to our group

Gilles

[Steve-o]

Gilles,

Very cool links.   Now I just have to learn French.  I have found music therapy to be relaxing.  Helps with all the anxiety associated with the dx.  Lately, tune to Pandora for Cat Stevens, James Taylor, Neil Young - more mellow stuff.

The paintings were nice as well.

Again, thanks.

Steve

[CallMeLucky]

If you're a fan of Neil Young, you should check out this link of Jimmy Fallon doing his Neil Young impression singing a Miley Cyrus song.  He even gets Crosby and Nash to sing backup.  Pretty funny.

http://www.rollingst...-u-s-a-20110526

[Steve-o]

Joanne,

Absolutely had the same sense of excitement and mystery surrounding the Gleevec delivery.  I signed for it from a cute FedEx girl - my wife was hoping for another driver she knows from work, but oh well.

Took the package to my onc nurse to verify the contents, discuss side effects, concerns, etc.

Popped the first one last night with dinner.  Had a little anxiety the rest of the evening - wait - is my heart still beating?, what's that rumbling in my stomach?, is that a cramp coming on?.....

Woke up with a mild hangover (although I joke I'm now 3 weeks sober), but nothing some water and a little breakfast didn't cure.

Day 1 in the books.

Thanks again, Joanne, for your description - hilarious.

Steve

[Steve-o]

I've seen Fallon do Neil Young before, but had not seen this clip.  It is very funny, thanks.  I've seen Neil in concert a couple of times in the KC area - amazing both times.  Lucinda Williams, who I also love, opened for him at one of the shows.

Music Heals!!!!!!!   And a tki drug don't hurt neither.

Steve

[PhilB]

Billie, if you get bored with that you could always try the winter version that my kids like:  Incy Wincy Spider climbed up the Christmas Tree / Down came the snow and made poor Incy freeze / Out came the sunshine and melted all the snow/ So Incy Wincy Spider had another go.

Fortunatley I have no idea how the tune for 'Philadelphia Freedom' goes and based on everyone else's responses I' definitely not going to look it up!

Phil