Aug 16, 2011 - 11:34 pm
So many of you have educated me and supported me.... thanks for that.
The last few weeks has been pretty tough to handle. My wife, with stage iv lung cancer has been preparing for a walking marathon and as little as three weeks ago walked 18 miles in one session. That was two days after beginning whole brain radiation. We knew wbr would be difficult, but wow. I have never seen my driven, energetic wife so fatigued.
Then things started to get worse. Very sore back (when she was dx she already had spinal mets but was asymptomatic) and daily the "flutter" in her lung, as she calls it increased. Now she just started 10 more days of spinal and lung radiation. Her cough is so bad that she vomits several times a day. She gets up with the kids and after they go to school sleeps a while does radiation and sleeps again till the kids get home. The plus has been that she does not cough when laying. Docs are hopeful the lung radiation will abate the cough.
To say the least it has been a difficult couple of weeks.... I know most of u understand.
But then out of the blue, great news.... we had discounted (almost forgot) the fact that we took a separate biopsy 3 weeks ago to test and retest for mutations. The doc called today and she tested positive for the alk mutation and will start crizotinib asap after radiation....now we(she) just has to push through the next few weeks.
We were tested for the alk mutation in the spring and it came back positive.... if u have been in that camp, it may be worth the time to retest for mutations. We used a different lab for the alk mutation this time. I hope I am not putting too much hope on crizotinib, but it seems to be the best hope as nothing else has been effective for long.
As always, I appreciate the input and support!