28 replies to this topic

[IGotCML]

You want to avoid any blunt trauma because your spleen is very enlarged and vulnerable to being ruptured.  My Onc told me the same thing when I was diagnosed as I also had an enlarged spleen.  He also told me to stop lifting weights until my spleen went back to normal.  I was lifting less than a week before I had my preliminary diagnosis and BMB and I unknowingly was risking a spleen rupture.

[chriskuo]

You will want to find out what tier the TKI you are prescribed is on in your insurance company' drug formulary.

If it is on a higher tier (as most specialty drugs are), there should be a process for your doctor to request a tier exception to lower the copay.

Most insurance companies require their pharmacies ship the TKIs overnight to your home on a monthly basis. They are usually very quick to remind you to refill and check that you are taking all of your pills, because their commission on these pills is sizable and they are under orders from the insurance company to control costs and waste.

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Thank you IGOTCML. I too was lifting and working kit with a personal trainer the entire 8 months prior to my diagnosis literally days before and my spleen was huge. I'm only allow a to walk or do elliptical with no incline I have one at home. Going to the gym is out until I can be around crowds and germs.
I am currently taking hydrea and waiting for Gleevec assistance from LLS hopefully will hear something this week. My onc office processed everything for me. I feel like I am in some type of limbo but at least now o know why I had all of the issues that I had. 😷

[Billie Murawski]

Thank you IGOTCML. I too was lifting and working kit with a personal trainer the entire 8 months prior to my diagnosis literally days before and my spleen was huge. I'm only allow a to walk or do elliptical with no incline I have one at home. Going to the gym is out until I can be around crowds and germs.
I am currently taking hydrea and waiting for Gleevec assistance from LLS hopefully will hear something this week. My onc office processed everything for me. I feel like I am in some type of limbo but at least now o know why I had all of the issues that I had.

I actually remember very little from when I got the phone call,until about 6 months later.I'll never forget the surprises (gi problems,pneumonia) but basically that time was just a blur.

[Billie Murawski]

Hi Pam thanks!  I'm happy you all are here.  Maybe someday I can help someone on here.  

Oh you will,we're all different and experience crazy things no matter how long we have had cml. It's so comforting to know someone else has had the same thing. I learn things almost everyday,because someone else was kind enough to share it with the board.

Forget modesty we share everything!                                  Billie

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I will remember that Billie!

[Gcasa]

Probably don't want you to rupture your spleen

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I actually remember very little from when I got the phone call,until about 6 months later.I'll never forget the surprises (gi problems,pneumonia) but basically that time was just a blur.

Just got the call this morning for the Gleevec now they have to deliver it.  

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Probably don't want you to rupture your spleen

Yep that makes sense.  It has gone down a lot but they can still feel it so I have a little ways to go.