Lillylung

Have a wonderful, wonderful cruise. I hope to see pics when you come back!!!!

Hi lilly,
I checked with smart patients and they could not find an application with a lilly in it. I did not have your email address to give them to check. They said to stay on on the options offered as to why you want to join like Patient. If you get creative then they have to check. Maybe you shoudl try again. They do have some members on PD therapy and some good articles posted.

The nice thing is with their site you can immediatly send a private message to a person if you want to talk off the site. Good luck.

Found an entire group on smart patients doing PD1 therapy. I am thinking of you and hoping its going well .

One more thing.. I THINK what happens with PD treatment is the immune system is improved so it can recognize the protein on the out side of a cell and kill it. Hey, as long as it works and does it job. I have heard that people can indeed take it over and over again.

There is so much in the pipleine now. Just hold on we will make it.

Oh Lily,
Thats really great news. Thanks for sharing. You give me HOPE too. You made my day.

The other site is the Lung cancer alliance -Lung Love. I suspect some PD 1's might be there.

What I hear alot about is using the PD therapy as a mop up. To get rid of cells that linger. If it were me I might ask if I could take Proton therapy to knock out any Lymph nodes and then the PD 1 or PDL-1 to mop up any remaining therapy.

Should I have a reccurance our plan is surgery to remove if possible, or radiation like proton and then a PD therapy. See I already have plan B or step 2 in place since I was IIIB.

I had a small tumor 2cm in upper left and 1 Lymph in the center. Chemo/Radiation/Surgery/Adjuvant chemo. Top lobe removed and 8 Lymph nodes. All cancer was dead but that does not mean cured as we know.

Oh yeah for you..I am so happy.

Cynthia

Lily another great blog is Smart patients ..I think they have people on the PDL-1 therapy there on that site.

Craig is just repeating what he reads from research articles. If I understand the PDL-1 correctly it blocks the PDL protein that sits on the outside of a cancer cell.

Some people have this protein which typically means they will respond well to the treatment. But some people do not have it and are not responding as well ( Sometimes).

But the kicker is that many many people with LC who have been through numerous chemos are showing up with high levels of PDL on the cell which could meand that lots of chemo makes lots of PDL-1..They just don't know.

Yale has been doing PDL-1 therapy for a long time. I bet they have lots of people on it as does Harvard.

Let me look around on their site and others and see what I can find for you. Give me a couple days.

As far as side effects from the PDL-1..not so many now because they have really refined the dosing. Thats what i have read.

All good wishes.

Dear Lilly,
I am sending good thoughts your way. I have great hope for you.

All the best,

CAS

I just saw your responce to the testing question.. Well thats a good responce for mutations. I was found to have no muts in my initial testing. Then i did the 220 mutation testing and they found a EGFR in an odd location and a BRC1 tumor supressor turned off. there are drugs for both in clincal trials. But had I not done the new testing I would not know this. Now they say there are 11 muntaitons in LC or a combination of the 11 and thats what they are focusing on.

Lilly,
How are you doing? I think of you because our cancers are so alike.
Have been sending good thoughts your way because I have such hope for you with this clinicla trial. Let us know how you are doing.
CAS

Sending you lots and lots of hugs and prayers. There are times in my journey I feel the same way you do, defeated by the whole darn thing. I find that the best way to get back my positive feelings, is to acknowledge the negative ones they are valid, and then start focusing on the positives in my life. Let us know what the result of your biopsy are.

Dear Lily,
I am really hoping you respond to this clinical trial but I really think you need to be mutation tested also.

I'll share your challenge with my very eclectic prayer group when we "chat" tomorrow. Meanwhile keep looking on the positive side - it's a whole lot better side of the street than the negative - have you ever tried to see a picture by looking at the negative? It just gets more confusing.

Keep it positive and smile

so glad you are doing well! my first 2 scans went well, 3rd one was a bit more problematic. so far, we're decided that i don't have more cancer in my lungs (what's left of 'em), but now my lower bask is 'glowy' - so an MRI tomorrow, probably to tell me i have arthritis (which i know) and i aggravated it when i had a slip and fall a couple of weeks ago.

(fingers crossed)

Welcome to WhatNext. I'm a lung cancer survivor, diagnosed September 2011.

I've been through the lobectomy, chemotherapy and radiation, and am at the 1 year mark from having been diagnosed.

I have found WhatNext to be a great supportive group here. If you have any questions, please don't hesitate to reach out. You can message me directly, or post to my wall - I always try to respond.

someone in another of my forums called it scanxiety. i'm a basket case between taking the scan, and waiting for the results.

let's both be well....... shall we?

very strange, Lilly - i posted on your wall, you commented, and i don't see a way to comment back atcha!

so in response, i post a new one on your wall............

it's all ok (at least for now) - the glowy in my lower back turned out to be an edema (swelling) from when i took a spill on some cement steps while visiting my parents in florida last month.

so i still have a bashed up elbow and a sore butt - but no cancer.

next scan is december 19, with the follow up appt with the oncologist on the 21st.

i get to breath for another 3 months!