Just got home from an ER visit. My sister has been having chest pain/upper back pain. Due to her cancer history, they did a CtScan. It showed 13 tumors between her lungs. We feel like we've been hit by a Mack truck. She was doing so well, or so we thought. Please lift her up in prayer. We need it now more than ever.
Hi Rebecca - So sorry to hear about your sister. I'm sure she will be in lots of thoughts and prayers. Keep us informed.
Tony
Im so very sorry to hear about your sister.
Keeping her in my thoughts and prayers.
I'm so sorry... Hugs and prayers to you. Are they trying any clinical trials on her?
I'm so sorry to hear this news... My thoughts are with you both.
So sorry to hear that. My husband has mets in his lungs too. It was devastating when we heard the news, but he has remained stable since we found out about the mets last August. He is still doing his normal daily activities and goes for walks. He started a clinical trial at the end of January. I take it a day at a time and I make every day we have count. Keeping you in my thoughts.
I'm so sorry that your sister and family are facing this devastating news. She's already been through so much, and so very young. My heart goes out to all of you. I pray that you find comfort and hope in the days to come.
(((HUGS)))
Lynn
Rebecca , I am so sorry to read this news.
I hope her team has come up with some options for treatment . Perhaps you can ask about Trials that are available.
Keeping you all in my thoughts.
Tammy
We met with an oncologist Friday afternoon. She came right out and told us that this cancer was incurable. There are a couple large tumors in her left lung and several small ones in her right lung. She is scheduled for a pet scan, mri, and lung biopsy next week. Also, they are planning to begin chemo on Friday of next week. My mind went blank while we were there and given the opportunity to ask questions. But now I wonder is incurable the same as terminal? Do people survive with lung cancer? Should we seek a second opinion? She has been receiving care at a CCC, but we are only hours away from Atlanta's Cancer Treatment Center of America. Any advice, any at all is most welcome. If you know of any body that's had a similar diagnosis, please share their story. Thanks for all your help.
I was afraid you would get that diagnosis. Yes, incurable is another term for terminal. However... chemo can be used to extend her life. But the time will come when you will need to weigh quality of life over quantity.
I would definitely seek out a second opinion right away. Of course its your choice but I feel CTCoA is not a good option. CTCoA honestly does not have the best reputation, it isnt a CCC even if it leads people to believe it is. I would doubt they would be of help, they patient shop so their numbers appear to be better than other centers.
Here is a list of top US hospitals.
TOP US HOSPITALS Best wishes!
If you want to seek out one of the top CCCs I know that md anderson in Texas is amazing. What Christine said was true. Incurable is terminal. Sadly mets to to the lungs is almost always fatal. There are a few people here undergoing treatment for lung cancers r/t oral cancer - check the recurrence section for their stories. I would ask about clinical trials and push for a second opinion. Miracles do happen - and I would be hoping for one for your sister. She's so young. Sometimes your do everything right from a treatment standpoint but the cancer is so aggressively hard to catch. Her tumor was very large. The biopsy of her lungs is to determine if it is mets or if it's a different cancer. There is actually a higher rate of survival if it's actual lung cancer and not oral SCC that's moved. Hey are also doing some kind of a response therapy in California (biopsy samples can be sent there to see what chemo her cancer responds best to. I would ask about this. Sometimes all you need to do is buy some time and maybe a better treatment will come along. Hugs to you and your family.
Rebecca,
I've been "incurable" since I was first diagnosed in August, 09. I'm somewhat less fit than I was then due to the depredations of the various treatments over the last 5 years, but although I am stage IVc and have been since Feb, '11, I anticipate that I'll be around more than the two years I should have statistically.
Stage IVc has a 5-year survival rate of Zero and I've been there for three years now. If that makes me "terminal," so be it. But the rumors of my death are greatly exaggerated if I do say so myself
I just finished another three weeks of beam-radiation on Mon, March 24th and I was in the gym yesterday. (I'd been out since 11/24, due to radiation sickness.) I do my best to lead the same life as I did before cancer. No one gets out of here alive, but the pity is that some people focus on fear and never are "alive." Don't be one of those, and don't let your sister be one either.
Best of luck to you both!
Bart
There are many ways to extend life of a "terminal" cancer patient for those willing to undertake then
[quote]...but the pity is that some people focus on fear and never are "alive." Don't be one of those, and don't let your sister be one either.[/quote]
Bart, you are SO right on. I make sure everyday is great, even if it is just the smell of the air or even the rain on the ground. No regrets, no what ifs, no woulda coulda shouda nonsense. No hate, no fear, no anxiety. Only grateful to have today on earth and try to do good things.
Having said that, the greatest fear I have is not following what I just said above and THE day comes and I have to admit I was not fully living that day.
Is the immunotherapy trial related to PD-L1? How is it working?
Baku, my husband is receiving immunotherapy and it is related PD-L1. I have posted all the information I am aware of under the "Recurrence" thread with the heading "Immunotherapy." John has been receiving the trial drug for close to four months now. He will be going in for his eighth infusion which will be followed by a CT scan later in the week and a review meeting with the MO. The trial drug has close to no side effects so far, but it does work slowly.