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Ex_Rock_N_Roller

dennycee
Posts: 666
Joined: Mar 2011

Checking in to see how you are doing and what treatment they are giving you. It's probably too early to know if chemo is doing its job but I am thinking strong positive mojo your way.

Dan620
Posts: 213
Joined: Dec 2009

Just hope everything is going well and like denny sending postive mojo........... Dan

kado4
Posts: 80
Joined: Jul 2011

Dito the above......hope all is going well.Saying my prayers for you.Kado

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 268
Joined: Mar 2011

In a holding pattern as of right now. They stuck the big needle into my back last week and determined that the two new spots (which aren't the big issue anyway) are the same flavor as what I already had (news flash).

Two-week wait now while they test for the mutation to see if Tarceva is an option. Between now and then, I'm just chilling out and eating Cheetos. Given the situation, nobody seems in a particular hurry to do anything.

When I get the final news, I'm going to have to do some serious studying of the options, with probably the biggest variable being the rate of change they are seeing in the originally treated area.

I'm also going to go for a second opinion at the biggest teaching hospital in the area. I don't expect to hear anything different regarding options, but at least I'll have some more eyes on the data.

ColoradoDani's picture
ColoradoDani
Posts: 65
Joined: Sep 2011

Haven't been here for a long time due to my own cancer diagnosis (early stage breast cancer. I should be okay in long run, but it sucks right now). I was so disappointed to see your post. I hope the EGFR comes back positive. Craig is doing great on Tarceva--hiking, climbing and even playing on a soccer team. I thought about reminding him he's not 25 anymore ,but I didn't want to be a party pooper. He just got scan results back today and cancer is "sleeping" still (as I tell our 7 year old). I think the teaching hospital is a great idea. Hope they tested for ALK, too, even though that's more likely to occur in females and Asians, but it can occur in anyone, particularly more likely with no smoking history. The hospital where Craig is going (University of Colorado) is leading some research on meds for ALK mutation, but I know meds are widely available now. Please fill us in. Thinking of you and all the others on this board.

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 268
Joined: Mar 2011

I was thinking of starting one of these APB threads about you!

I'm sorry to hear of the bump thrown into your path, but I'm totally stoked to hear about Craig. Good on the man; he is now my hero. And be quiet with that "you're not a kid" talk. We geezers need our illusions.

Against all odds, my nurse-navigator called on Friday to tell me that I was positive for ALK, so that opens me up for Crizotinib, which in the circumstances can't possibly be bad news. I'm taking Craig's experience with Tarceva as a boot in the butt to move forward.

We're heading out to Lost Wages next Monday with oldest daughter and SIL for a 6-day hiking trip (Zion and Death Valley are on the definite list so far), and when I get back, I'll no doubt be jumping on the new drug (subject to confirmation with onco on Monday).

As always, thanks for the kind words, stay strong, and if I'm on the road come trailer travel weather next spring, don't be surprised if I try to contact you guys.

Best,
Steve

ColoradoDani's picture
ColoradoDani
Posts: 65
Joined: Sep 2011

we liveon 35 acres and have plenty of room for a travel trailer. I was talking to the oncologist today (we now share--isn't that romantic?) and she clarified tha there is no evidence of cancer except for a small area on a lymph node, so the Tarceva didn't just halt it, it made it almost go away for now. Craig is getting regular treatment here in Durango, but originally went to Denver to Dr. Camidge at University of Colorado Hospial, one of the developers of Crizotinib. He's an amazing man with an excellent demeanor, I'm glad you have a positive test and wish you good luck with this. Have fun hiking in the desert. Those places calm my soul.

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