4 replies to this topic

[August1]

Hi everyone,

I've been on Sprycel 100 mg for about 5 months and am CCyR. (Last PCR 0.55). I am considering a backcountry ski trip with some friends in Colorado in about a month. I used to live in Colorado and backcountry skiing was a way of life back then, but that was many years ago and before CML.

The hut where we would be staying is right around 11,000 ft. and we'd be there for two nights. My concern would be in combining a lot of physical exertion at altitude with Sprycel and what the effects on lungs and heart would be. I have mild hypertension (take a med for that) but am otherwise in good shape and exercise pretty regularly, although I would say that since starting Sprycel I've noticed somewhat diminished lung capacity and occasionally get some "funny" chest pains.

Going to ask my docs and maybe have them check me out, but does anyone have experience with this?

Thanks,

Bill

[Marnie]

I live in Colorado and am on Sprycel (actually I'm off right now, dealing with a second pleural effusion).  I was snowboarding at Loveland last weekend. . .elevation is above 10,000 ft.  Even with a bit of pleural effusion, the snowboarding was fine (20 inches of new powder by the end of the day).  I don't think the elevation or exertion will be any more problem for you because of Sprycel than it would be for a person without cml.  That said, the altitude is still going to be an issue for you, simply because you don't live here. 

Stay hydrated, hopefully have a day or two to become acclimated, and then go have fun.  What hut are you skiing to?  We did a hut trip a few years ago (pre-cml).  Can't remember the name, but it was the one that starts out at Copper Mountain ski resort.  We carried our snowboards and snowshoed in with heavy, heavy packs.  Gah!  Too much stuff to carry (that damned frozen spaghetti sauce weighed a ton, and the bottle of wine didn't help, either).  We did have a good time when we got there, and the powder was amazing!

Heading up snowboarding on Sunday. . .with the Bronco game going on, ski traffic will be far better than normal, and there won't be any lift lines.  Can't wait!

Have a great time!

Marnie

[Marnie]

Hey, Bill. . .when you are out here, do be sure that you get good information on where you will be.  Avalanche danger is pretty high right now.

Be safe.

[August1]

Hi Marnie,

Awesome feedback. Thanks! I lived in Colorado for about 10 years in total. (Idaho Springs, Boulder, and Golden.) Lots and lots of memories and I miss it a ton!

We're heading up to the Polar Star hut. I've done several in the past including Eiseman and Skinner. I think Janet's Cabin is near Copper (?) I'm already training for the effort but totally respect the altitude as well. I will definitely stay hydrated and we're going out a couple of days early to get a day on the lifts prior to heading up to the hut.

Sorry to hear that you're running into PE. What a pain but glad to hear you're on top of it and enjoying the snow! Seems like Sprycel is really effective at treating CML but also comes with some considerations that we all need to be aware of.

Best,

Bill

[Marnie]

You nailed it.. .it WAS Janet's Cabin.  Our weather has warmed up a lot, but the mountains are still getting snow.  Vail and Steamboat Springs got dumped on the other night.  You are going to have great snow when you get out here.

Not sure that I have the fortitude to do a hut trip any more.  The work-to-fun ratio is pretty high.  I've turned into a wusse (how do you spell that??) and prefer chair lifts to climbing up hills.  I've moved from mountain biking to motorcycling. . . again. . .work-to-fun ratio is a whole lot better with a motor attached. 

Have fun when you get here!  As you know, you just can't beat Colorado for having fun in the great outdoors.

Marnie