[My Stage IV S.B.R.T. Experience]

I am now stage lV and am a bit overwhelmed.

 

So, after brain MRI they saw 2 small spots in brain.   I am ALK positive and my doctor wants me to take Alecensa 'Looking for other ALK people to connect with.  (I appreciate connecting with all of you)  I am not good with side effects and often want to quit doing the treatment.  I hope to get support in helping me stay on the drug.  Thanks for this forum,  Myra

 

[Second Opinions]

Yes,  I just got a 2nd opinion and the 2nd opinion doctor  team did more testing than my original onc.   For one thing he did the testing with Caris for bio markers and  I am positive for ALK and am looking for others to connect with on this.

By the way enjoy connecting with all of you

M

[Hope Is A Good Thing]

Thank you,  Katie and Tom 

Myra

[Hope Is A Good Thing]

Tom, 

I have a question.   I hope it's OK to ask it here, I'm just trying to learn how to navigate the site, so excuse me if I am writing in the wrong place.     About a year and a few months ago I had surgery due to finding a small mass or nodule on my upper right lobe,

on my lungs which started to grow slowly.   In the surgery it was biopsied and found to be non small cell adenocarcinoma.   Doctor said I had stage 1a.  No chemo or anything followed.  Now a year and a few months later another mass or spot found.   First sugery was suggested from my oncologist. I went to the sugeon for f/up and he said I am not operable.    The oncologist then said watch and wait for 3 months to take another scan to see if this mass grows.  I am due to f/up CT scan at the end of this month.  People like my brother who is a retired MD asked me back then are you sure it's OK to 'wait and watch'  My PCP also said "I don't agree with waiting, I think you should do something right awa y like biopsy.  I was very overwhelmed at the time. 

Now, In thinking this through,  first doctor said surgery and couldn't do surgery said 'watch and wait'     That seems like a 180 degree turn from suggesting something aggressive like surgery to 'watch and wait.'   I am ofcourse going to do the CT scan soon, yet I also am planning on asking my PCP  - who I really trust for a 2nd opinion.

Any comments?           (I send my best wishes to the last person who is concerned about their dad)  Again I am sorry if I wrote in the wrong place but not too good at technology

[Rose Vining's Story]

Thank you    Very positive.   We need that!

M