MarieE

Wonderful news, Robert! My husband got approved for the 2-week free trial yesterday so we're just waiting to get the drug into our hands. We've also been working with Novartis for the ongoing assistance program. Hoping that Trabecta works great and with minimal side effects for both of our spouses!

We have a consult this afternoon to discuss Tabrecta. We had been waiting for the final genetic testing report to be completed, and it was confirmed this morning that my husband has a MET exon 14 skipping alteration. He had a very bad experience with an initial round of chemo after his lobectomy so we are hoping this is an option. Never thought I'd spend so much time praying for targetable mutations! 😉

No I never followed up with that company .   I had NSCLC .   My husband 's spread to his brain before he had a biopsy.
He had symptoms of falling down so they did a spinal tap and only told me he had cancer there causing irritation and the dizzyness.
They told me it was not treatable and he died in a week.   Since that was almost 8 years ago and not enough info what would be the use of doing that.   
Donna G

Yes. We had stopped everything for a week and then he took one pill and started vomiting violently again. Switching to Xalkori and hoping for the best. 

Even though I am grieving my husband did a great thing he donated his body to Robert Wood Johnson Medical School Anatomical Association in hopes that studying his body may give some light in the study of this disease.  My only comfort right now is there is no more suffering.
Thank you again for your kind words they help.

Hello group, hope all is well with your treatments during this pandemic. I last posted in September after my wife's 1st scan after being on Tabrecta for 3 months which showed her tumor had shrunk more than 1/2. It's been another 3 months on the same treatment so we went for a scan last Thursday with a Dr. follow up the 31st. The treatment has gone rather easy with the only side effect being swollen feet on occasion. The Dr. prescribed a water pill to take when needed. This medication has been so much easier because she can take it at home 2 pills in the morning and 2 pills in the evening. He's hoping that the Trabecta is still doing it's thing and will post the results in the New Year. I hope all of you have a safe and Happy Holiday and may the New Year bring us new treatments.  Robert & Vera

I wish you and your husband the best. You have been through a lot.

Thank you, May. Yes, it is a lot. And it all happened so fast. Honestly, he seems to be calmer about it all than I am. 😢

Well, it turned out that the palliative care appointment was actually an appointment to discuss hospice. So it looks like that is what it has come to. My husband has dropped another 5+ pounds in the last week and his BMI is down to 16.7. Hopefully focusing on comfort care will at least improve his quality of life. It's also been exhausting dealing with numerous different specialists who often didn't seem to talk with each other. This should help in that regard as well.

Thank you. I spoke with his oncologist again this afternoon and someone is coming out Sunday for an evaluation to see how they can assist.

He is seeing a pain specialist and a nutritionist but not someone dealing with everything holistically. I have not been able to find one in the area at this point. 

So, today is day three since infusion #2 and he is the sickest I've seen him since the worst of chemo and the targeted drugs. He is very nauseous and spitting up a lot, and goes from being cold to sweating through his clothes. He has not eaten anything today since a smoothie this morning. I'm at a loss. I understand about being "brave" and "fighting" but at some point this seems pointless and actually harmful vs. productive. Sorry, just venting at what seems to be a hopeless situation. If the cancer doesn't kill him he will die of malnutrition and starvation. His BMI is just over 17. Oh, and the pain never goes below a "5" despite fentanyl patches and gabapentin.

Dear Marie:
My dear friend and neighbor Gladys, went on Hospice care after her colon cancer returned and became unresponsive to treatment. She was kept very comfortable for about "three years", and peacefully went ahead of us at the ripe age of 98 in her sleep. They also provide relief for caretakers.
Jack

Thank you, May. Yes, it is a lot. And it all happened so fast. Honestly, he seems to be calmer about it all than I am. 😢

Well, it turned out that the palliative care appointment was actually an appointment to discuss hospice. So it looks like that is what it has come to. My husband has dropped another 5+ pounds in the last week and his BMI is down to 16.7. Hopefully focusing on comfort care will at least improve his quality of life. It's also been exhausting dealing with numerous different specialists who often didn't seem to talk with each other. This should help in that regard as well.

I  am on Keytruda and Alitma. I asked my oncologist that same question and his answer was yes. My PDL-1 is zero so I was surprised.
Of course we are all different and some people respond faster and better than others. 

Marie: Being familiar with Hospice they were a welcome help for both of us. Hopefully they  give you the relief and piece of mind by taking good care of him. I wish you the best.

Hi, Marie,
I'm sorry you seem to be out of options consistent with quality of life. But when you get to that point of not only diminishing returns, but actual harm resulting from continued treatment, hospice can be a godsend. I've heard some great stories about the relief they can provide.
You and your husband are in my thoughts.

Well, it turned out that the palliative care appointment was actually an appointment to discuss hospice. So it looks like that is what it has come to. My husband has dropped another 5+ pounds in the last week and his BMI is down to 16.7. Hopefully focusing on comfort care will at least improve his quality of life. It's also been exhausting dealing with numerous different specialists who often didn't seem to talk with each other. This should help in that regard as well.

Marie, I'm so sorry to hear about this. I do hope that hospice will help to make him more comfortable and that you  can be together in peace and comfort. Blessings to you both.
Bridget O

Well, it turned out that the palliative care appointment was actually an appointment to discuss hospice. So it looks like that is what it has come to. My husband has dropped another 5+ pounds in the last week and his BMI is down to 16.7. Hopefully focusing on comfort care will at least improve his quality of life. It's also been exhausting dealing with numerous different specialists who often didn't seem to talk with each other. This should help in that regard as well.

Sorry you have to go through all this, it is a lot to take. 
May god be with you and give you both the strength and patience. 
 
 

Well, it turned out that the palliative care appointment was actually an appointment to discuss hospice. So it looks like that is what it has come to. My husband has dropped another 5+ pounds in the last week and his BMI is down to 16.7. Hopefully focusing on comfort care will at least improve his quality of life. It's also been exhausting dealing with numerous different specialists who often didn't seem to talk with each other. This should help in that regard as well.

Well this puts the icing on the cake so to speak. Got on the bus was on my way to the end of the line subway stop that is indoors and I thought I could build up my strength walking as there aren't many people here. Got the phone call from my test on Wednesday as I has been more  short of breath and sweating and just plain tired.
This explains a lot,I just hope it doesn't get more full blown Am supposed to start with Immuno on Friday. I have been so careful with prevention too.
Say some prayers thanks.

Thank you. I spoke with his oncologist again this afternoon and someone is coming out Sunday for an evaluation to see how they can assist.