Due to the system change here, all prior discussions seem to have been closed to replies. I hope "sleepless in jersey" notices this re-posting of her question.
Back on 6/27/2012
at http://cancergrace.org/lung/topic/looking-for-craig-from-pa/
"sleepless in jersey" asked:
Hi Craig
I have just been informed a tad about you and how you go to Dr. Shaw wondering if I could get some info or is your info on the forum that you could just direct me so you wouldn’t have to repeat?
My Mother is negative on EGFR and I assume with the rest since the Onc says neg to everything. She has recently started her 5th line of chemo and trying to look at the glass half full with this new TX, however it looks like it mostly used for SCLC. Looking forward from hearing from you!
Sleepless
Sleepless,
Sorry I didn't see your question before. I don't check for messages here often enough & I haven't figured out any way to be automatically notified of new messages in particular category. "hopeforamiracle" said they tried to get my attention, but I didn't receive anything.
Your mother has adenocarcinoma that is negative for "everything"? That has meant different things to different doctors in different years. If you called your oncologists office, any nurse there should be able to tell you what specifically was tested. You said EGFR, but what about ALK? ROS1? KRAS? If negative for EGFR, ALK, and KRAS, I'd recommend you ask your doctor about testing for ROS1 (especially if a never-smoker even if not yet tested for KRAS, but even some smokers have a small chance). There are also other possible driving mutations that might be useful in clinical trials if she could travel to those and is fit enough to be eligible. (There's more than 100 mutations, but few that are potentially useful.)
BTW, I may have met the person in your picture in the past, but let's save that for a private discussion.
Best hopes,
Craig
Reply # - July 9, 2012, 01:33 PM
Reply To: 'sleepless in jersey' qns for 'craig in pa'?
Hi Craig
I am so happy I just quickly looked back on and had seen you posted :)
I am right now writing a note for Mom's Onc now and going to fax it in a couple of minutes, because I wont be able to go to Wed. visit (Dad will be bringing her, my daughter has pre-admission testing in the morning as well).
I am putting that on the list of questions re:ROS 1 and to confirm that ALK AND K-RAS also were neg. as well. I spoke to Dad and he doesn't think Mom would travel to Boston (unfortunetly has lost faith in Doctors so for her to travel dad just chuckled at me :( )
I would love to hear how Mom looks familiar to you to you, I could give my email...I'm not on Facebook!
Thanks
Sleepless
Reply # - July 9, 2012, 02:27 PM
Reply To: 'sleepless in jersey' qns for 'craig in pa'?
I'm delighted you found my reposting of your old inquiry.
If she has the ROS1 mutation, I'm sure she'd be glad to travel to Boston to get treatment since it would probably make a big difference to her, but let's take one step at a time and not assume the small-chance item before we figured out what has already been tested and what can be tested next.
BTW, the last time I heard feedback from someone, no place in NJ (not even Sloan-Kettering) had their own ROS1 test, so the biopsy sample would probably need to be sent to MGH in Boston (nearest place I know of) where they have the most expertise with that anyway, probably with Dr. Shaw coordinating if your mom would be willing to visit there once. (Most people who have told me how their visit there went said it was very well worth the trip even if it turned out that they didn't have a currently-useful driving mutation.)
Best hopes,
Craig
________________________________
P.S. -- Regarding how I recognize that face, I don't think CancerGRACE offers any private messaging, so you might want to reach me via
http://www.inspire.com/CraiginPA
Click the link under my name at the top to "Send message" and you'll be prompted through the process to invite me include you in my list of "friends" (in the online social network sense), and you can type a message along with the automatically-drafted invitation message. You will need to have set up an account there first, though; you can leave most of the reg'n details blank if you prefer, but the group is the Lung Cancer Survivors forum: http://www.inspire.com/groups/lung-cancer-survivors/
CancerGRACE here has the great advantage of physician-monitored discussions, though, and attracts fewer people who rely on anecdote or promotional claims rather than disciplined research. Unfortunately I tend to miss new discussions here because I haven't found a way to be notified automatically whenever there's new discussions in a category.
Reply # - July 12, 2012, 04:48 AM
Reply To: 'sleepless in jersey' qns for 'craig in pa'?
Hello Craig
I spoke to Onc yesterday and yes Mom is Neg to KRAS, ALK & EGFR and put a call into pathology at the Hospital if they do ROS1 and if they don't, do they know who does? I told her that I was informed MGH does. She also wanted to know if the insurance co. doesn't pay for this are you willing? We said we will cross that bridge when we get there, but did see your Ins. comp did good for you!
FYI Mom was a smoker and quit 6 yrs ago.
Would love to still know how you poss may know my Mom, not sure if I want to register with inspire and try to stay connected with them, hear and my other stuff it's just to much with how much I have on my plate :(
Sleepless
Reply # - July 12, 2012, 01:04 PM
Reply To: 'sleepless in jersey' qns for 'craig in pa'?
(Darn, this site just gave me a "busy" reply and wiped out my long reply! Trying again . . . )
sleepless,
Stage IV adenocarcinoma that is triple-negative for KRAS, EGFR, and ALK would make ROS1 worth testing.
Being closer to 60 than 50 reduces the odds of ROS1 a bit, and being a long-time smoker reduces the odds a lot, but ROS1 has been found in people in their 70's and in some smokers, so it still seems worth testing. (KRAS is the most common driving mutation in smokers, and you've ruled that out already.)
I'd recommend you contact Dr. Alice T. Shaw (the top superdoc for ROS1) at MGH in Boston by email for her thoughts on that. That might lead to your wanting a "2nd opinion" office visit (she's wonderful, in my shamelessly biased opinion), or to just having her coordinate things on her end with your local oncologist to get a tissue sample shipped up to test.
BTW, if ROS1 isn't the right one, there's up to 130 mutations they can test for in an assay test, as described in
http://www.massgeneral.org/cancer/news/faq.aspx
and http://www.ncbi.nlm.nih.gov/pubmed/20432502 . A few of the other rare mutations also have clinical trials. (The most promising ones use the same drug that is already being used for a similar mutation or the same mutation found in another kind of cancer.)
Here's a high-level overview about ROS1 that I contributed to Linnea's well-followed blog recently:
http://outlivinglungcancer.com/2012/06/26/a-new-mutation-on-the-block-r…
My insurance covers most tests automatically, including my ROS1 mutation test. Your mom's insurance might differ.
FYI - inspire.com does not add anything to your plate. You can set your https://www.inspire.com/member/settings/ to be completely invisible and opt out of any kind of contact you prefer to avoid. I'm not comfortable with disclosing personal email addresss in public forums, but you might be able to google Alice's address.
Best hopes,
Craig in PA