Hi, Buzz.  Sorry you have to be a part of this group, but what a group it is.  I'm Kay, Dx'ed July 2008.  FIrst WBCs were in the teens and then started jumping about 10,000 per day.  I responded quickly to Gleevec and soon my counts were too low.  They have leveled off in the past 6 mos or so and I am finally feeling better.  Everyone responds to the G differently.  I've had every side effect listed, but some have gone away.

Just know that this is a great place to speak your mind and also vent when you need to.  We've all done it and expect to hear from you often.  Nothing like a life changing event as you said to put all things into perspective.  My own insurance is pretty good, but if I retire in the next couple of years, I will be on my husbands which will be prmiary (it's been secondary).  He is a cancer survivor and it's scary for both of us.  We're still waiting to see if Medicare will be with us at 65 and what meds it will cover. My guess is not muich, by the time we get there (two years for him and four years for me)

Ask all the questions you feel like asking.  Someone will have an answer and we are very encouraging.  Glad to meet you.

MomMom

Hi Buzz:  I am reading all the posts regarding the costs of Gleevec etc.  I do not know what your financial status is, but you could always contact the Patient Assistance for help if you need it.  Go into the main page of the Leukemia & Lymphoma Society.  Look down the left side of all the titles.  Financial Support etc.  Someone just told me they applied for somehelp that may give them$5000.00 toward co-pays.

     I did not check it out myself, as I am under my husbands Insurance plan with his job.  Just a suggestion.

     When my husband was out of work, I got help from Novartis Pharmaceutical. I got my Gleevec free for 1 year after filling out a financial form.

     Right now I am paying $80.00 for a 3 month supply of  Gleevec 400mg, but its still costing us a lot of money between the 2 of us and all our other medications.  It really gets to you sometimes.

    Again, glad you joined us.

Susan

Yes, getting an abdomen scan is normal.  Up to 75% of patients have an enlarged spleen.  Mine was just checked last week and looking "beautiful" haha I love my oncologist I guess Im weird... I have never really had ANY symptoms of aCML (atypical CML) except the joint pain.  And when that happened it came with a vengence... I lost the ability to walk, type on the computer, etc.  Have they looked into giving you anything for the joint pain? I ended up going on extremely high does of Oxycontin (which was a beast of a withdrawal from...) I am not off ALL pain meds, but it took a long time.  And you know what? It was okay that I resorted to them... At first I felt like I was defeated by giving in, but it helped and I got through it. Dont stress about the bone marrow Have they given you the option of being sedated? Honestly - the sedation works AFTER you get home! haha.  Not while getting the BMB done... I had a bone marrow done on June 4, October 9, and another one coming up at the end of December.  They arent to scary anymore... I remember when my mom had hers 20 years ago... she cried anytime someone just mentioned it because it was so painful. Medicine has come along way...

Definitely go to the LLS main and find about assistance... I checked for copay assistance.  What I read was that if you have a 2 person household, you have to main less than $72,000 (somewhere around there) to qualify... They also have a lot of other assistance programs.  I wrote a letter to my student loan place and they gave me a year of hardship (I almost typed "free" but they will get me somehow!! haha)

What a small world about growing up in Pgh!!!!!!!!! My husband has season tix to the Steelers and Pens so I dont think we'll be moving anywhere for a long while... When I bought a car with seat heaters, I figured I would be here in this snow/ice/freezing mess forever haha.  I love Cali though! Such great weather all the time

Jacquelyn

http://www.caringbridge.org/visit/jacquibuckley

Welcome to the club, Buzz.  I don't have a lot to add to what the other people have said, but I thought I'd comment on this...

I've used PHP and MySQL quite a bit, but unfortunately I'm way too busy with grad school to help, especially since I was recently diagnosed as well and the hospital/appointment time has interrupted my work quite a bit.  Best of luck on your idea, though; I'd be interested to hear what makes it "new". 

That is awesome Buzz - hope your results on G giving you the same good news over the next year.

Larry