confusing, scary, hopeful.... radiation + crizotinib

NayPaul

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!

Hope4Marge

The ups and downs of this
The ups and downs of this disease! Such great news she was a match for crizotinib, as I understand the percentages to be a match are low but results of helping are high! I am so happy for your wife and I admire her strength. Hugs!

grannylove

NayPaul
I am glad you both were able to get a ray of sunshine! Seems to arrive when we need it most. Sorry that the WBR is so hard on your wife and hope that the next couple of weeks produce wonderful results as well. Stay strong NayPaul, recovery is at the end of that rainbow. My prayers are with you! Cheryl

stayingcalm

Tried to message you about this very subject
- but the messenger wouldn't take it for some reason Such good news - I'm so happy for you and your wife!

I don't know who on CSN is taking Crizotinib, but I have a Facebook friend who has been on it since the early trials, if you need any info.

Best of luck go with you,
stayingcalm

PS - she is also on Inspire (look for Matson001), and I believe she was charting her whole Crizotinib experience there, it might be a good thing to check out. I'm not allowed to post there, they threw me out

NayPaul

stayingcalm said:

Tried to message you about this very subject
- but the messenger wouldn't take it for some reason Such good news - I'm so happy for you and your wife!

I don't know who on CSN is taking Crizotinib, but I have a Facebook friend who has been on it since the early trials, if you need any info.

Best of luck go with you,
stayingcalm

PS - she is also on Inspire (look for Matson001), and I believe she was charting her whole Crizotinib experience there, it might be a good thing to check out. I'm not allowed to post there, they threw me out

u crazee rebel
I remember they thew u off for less than good reason. Sad.

I don't post there buut have went to look up crizotinib experiences. I believe I found your friend. Those threads have been very helpful.

Need to make it through this week. My wife is in pretty rough shape. Id like to think she will get better, but I am scared right now. My oldest two kids have not said much, but I know they r scared and are hoping better days are ahead.

arndog64

NayPaul said:

u crazee rebel
I remember they thew u off for less than good reason. Sad.

I don't post there buut have went to look up crizotinib experiences. I believe I found your friend. Those threads have been very helpful.

Need to make it through this week. My wife is in pretty rough shape. Id like to think she will get better, but I am scared right now. My oldest two kids have not said much, but I know they r scared and are hoping better days are ahead.

Lung Flutters
Just curious, can you explain what a lung flutter is. My husband just finished up chemo/rad for the throat and last night I was laying next to him and his chest just rumbled/fluttered. I guess I always worry about problems with his lungs, when he had his first pet scan they found the throat cancer and a spot on his lungs. They did a biopsy on both areas and the lung came back negative. But, I still worry!!!!

NayPaul

arndog64 said:

Lung Flutters
Just curious, can you explain what a lung flutter is. My husband just finished up chemo/rad for the throat and last night I was laying next to him and his chest just rumbled/fluttered. I guess I always worry about problems with his lungs, when he had his first pet scan they found the throat cancer and a spot on his lungs. They did a biopsy on both areas and the lung came back negative. But, I still worry!!!!

just a made up term
The flutter is just a made up term she came up with for the euphoric state she sometimes feels when she is breathing.... she has had the rumbling...... and that can be a lot of things so mention it to your doc. In her case, it was a lymph node compressing part of the airway causing a small portion of the lung to not expand. That has abated since the radiation started.

NayPaul

stayingcalm said:

Tried to message you about this very subject
- but the messenger wouldn't take it for some reason Such good news - I'm so happy for you and your wife!

I don't know who on CSN is taking Crizotinib, but I have a Facebook friend who has been on it since the early trials, if you need any info.

Best of luck go with you,
stayingcalm

PS - she is also on Inspire (look for Matson001), and I believe she was charting her whole Crizotinib experience there, it might be a good thing to check out. I'm not allowed to post there, they threw me out

Moving in the right direction!
What a difference the last 18 hours have made. We doubled my wife's morphine and added some cannaboid pills. AND.... I think the radiation is starting to make a difference. Finally, I bought a big pill sorter 7 days with 4 bins for each day. I was then able to truly get my wife's meds organized for her.

So today she gets up before me, gets the kids ready for school, takes them, works most of the day, and wanted to go out to dinner tonight. The cough has seriously dissapated. I'll take this day again and again. She even said she wants to start walking again this weekend.

Glenna M

NayPaul said:

Moving in the right direction!
What a difference the last 18 hours have made. We doubled my wife's morphine and added some cannaboid pills. AND.... I think the radiation is starting to make a difference. Finally, I bought a big pill sorter 7 days with 4 bins for each day. I was then able to truly get my wife's meds organized for her.

So today she gets up before me, gets the kids ready for school, takes them, works most of the day, and wanted to go out to dinner tonight. The cough has seriously dissapated. I'll take this day again and again. She even said she wants to start walking again this weekend.

So happy........
Wow, that is truly a wonderful change!!!! Hope this is a sign that she is finally on the road to recovery.

She does more in one day than I am able to do in a week...LOL She is truly a remarkable woman!!

Stay strong,
Glenna

grannylove

NayPaul said:

Moving in the right direction!
What a difference the last 18 hours have made. We doubled my wife's morphine and added some cannaboid pills. AND.... I think the radiation is starting to make a difference. Finally, I bought a big pill sorter 7 days with 4 bins for each day. I was then able to truly get my wife's meds organized for her.

So today she gets up before me, gets the kids ready for school, takes them, works most of the day, and wanted to go out to dinner tonight. The cough has seriously dissapated. I'll take this day again and again. She even said she wants to start walking again this weekend.

Great News
NayPaul, Sounds like great news! Hopefully she will continue with days like this. It is always good to feel like we have a "normal" life back (or at least some of it) and I know how much she is looking forward to the marathon. What an inspiring woman! Sending positive thoughts and prayers.
Cheryl

hope0310

grannylove said:

Great News
NayPaul, Sounds like great news! Hopefully she will continue with days like this. It is always good to feel like we have a "normal" life back (or at least some of it) and I know how much she is looking forward to the marathon. What an inspiring woman! Sending positive thoughts and prayers.
Cheryl

What a great day!!! Reminds
What a great day!!! Reminds me of the song, What a difference a day makes.....

I have not been on in quite a while, I was sorry to read of the changes in your wifes condition. You all have remained SO STRONG!! Attitude is everything, and you all have paved this way so completely.

Continued good days for your wife and family!!!