https://drive.google.com/open?id=0BxM4roXfA4rjR0V2TXF5cnR0TDA

If this was your recent pet would you get 2nd opinion for treatment recommendation to wait 2 months? Or get a second opinion?

I have a copy of my latest PET scan (see link) It says
There has again been a progression of disease. Previously described nodules have enlarged and become quite intensively more hyper metabolic.

What would you do?

Larry, its not easy to answer your question. I have no doubt we all want to help you interpret the PET. Please understand that our group is made up of survivors/patients and caregivers, non medical professionals. We dont have years of medical education, training and patient experience behind us. We simply arent qualified to read the PET results to have a complete understanding of everything thats written. This is why its so important to talk with the attending physician and get the test results explained in detail by doctor who ordered it.

A second opinion is never a bad idea. Having a second set of qualified eyes look over all your tests, a thorough exam, and talk with you will help. To me, your case appears as a complicated one, if at all possible do you have access to a Comprehensive Cancer Center (CCC)?

List of CCCs


This may have already been discussed with you (and I apologize if its a repeat) but just in case it hasnt... have you looked into the new immunotherapy drug, Optivo? Please take a look at this thread, I hope it will be of some help to you...

Immunotherapy Trial/Drug

Best wishes!!!

Hi Larry,

Since the lung is showing progression I would get a second opinion right away. Certainly waiting 2 months is too long.

Go to the best facility you that will accept your case. Get all your documentation together, organized, and copies ready to send.

MD Anderson is one of the best and is in Texas so not too far. There are some well known places in Florida. Memorial Sloane Kettering and Johns Hopkins are very good. Check the list Christine has posted. Good luck.

I live in the black hole of national cancer institutes. If I am to do a clinical trial I will have to move there and would only have my wife's support. I am at least 315 miles away approx 4 to 6 hrs away.

I did ask oncologist to try to get Opdivo on a compassionate care basis. Still haven't heard anything.

I also sent my info to UAB in Birmingham as it is closest. I haven't heard back yet.

I am told I have a difficult tumor type. I am not being treated now. I feel like I am just suppose to wait and die.

What does one do in this situation? I have tried numerous avenues for help and housing to no avail.

I saw my PET my lungs are covered with lots of nodules.

I have developed a deep continuous cough.

Maybe this link will be helpful. It has a few places that offer assistance with travel such as free airfare and next to nothing housing near the CCCs. There are things out there but it takes lots of leg work to connect with the right ones.

Hope this helps.

OCF main site-- Financial Assistance

I begin treatment with Opdivo on July 8th, 2016. My oncologist here at home agreed to try and I applied for a compassionate care from Drug company and received for 2016.

I have developed a deep cough which is almost continuous. I have been taking an antibiotic, I'll finish today.

Thank you for all your help and if anyone has experiences with this treatment feel free to share. My primary was base of tongue nov 2014 which metastasized to my lungs in 2015.

Hi Larry, it's good to hear you are finally going to get Opdivo. Being treated at home means your wife will be getting the support she will need. I hope with all my heart you will benefit from the drug and that things move smoothly. I am keeping you and your wife in my thoughts.

Hello everyone I'm on 4th treatment of Opdivo and doing great. Have good quality of life, tumors shrinking, coughing gone and energy back. Loving life right now!

Hi Larry,

I was scrolling through the posts yesterday and came across the one that your wife wrote on your behalf a while back. It started me wondering about how you were doing and this morning I saw the positive news! I can't tell you how wonderful it feels to know that you have found something that works for you and gives you back your quality of life. Please keep us posted and enjoy the lazy summer days we are having now.

Congrats Larry!!!

Im so happy you are feeling good and having success with Opdivo. Please stop back from time to time to give us updates. This is soooo helpful to others who are struggling in their fight.

Thank you!!!

Larry, I too have been wondering how you were doing on the Opdivo. I am thrilled to hear this! Congratulations!

Larry, that is awesome news. Great to read that life is good again.
Really uplifting for those others in your situation to read. I will pass this on to a friend who has recently been diagnosed with lung metastases. Hope. We all need hope.
I wish you the best and look forward to reading more positive updates from you.
Tammy

Sounds fantastic. Keep us posted.