I don’t have experience with recurrence after such a long period post successful treatment, however I did have a right lung nodule that took a while to diagnose and treat (about 7 months?). I did end up getting on ipi/nivo, which ended up being successful for that nodule.

I also can’t speak to the decision to remove your lower lobe,…Read more

Last week I had my 6 week follow-up scans and appointments at MSK, and I have good news! There was about 30% shrinkage of the tumors and resolution of the edema in my two brain mets, and 50% shrinkage in my paratracheal lymph node that had been suspicious. On the brain PET there was zero uptake/avidity in the area where I have my…Read more

I’m glad to hear that you are doing better, and that you haven’t had any new neuro issues since cutting down the dex. I was on keppra for a while. I think it did contribute to some fatigue and irritability, and I was probably on a smaller dose than you. Looking forward to hearing some good news on your next MRI, and that you’ll be able to…Read more

It is exciting that she is being considered for this TIL trial at UPMC. I visited Dr. Davar there last spring to discuss trials at the time, and had a really good experience with them. They…Read more

In your previous message you…Read more

Release from Hospital

I was released from the hospital last Wednesday, which was about 2 days after my blood cell counts normalized (WBCs, platelets and Neutrophils. Hemoglobin and RBC were still a little low) and 3 days after I stopped having headaches. I was in the hospital for 20…Read more

I progressed 6 months after I completed my adjuvant treatment.

Last detailed update I gave was before the TIL infusion, so we’ll start from there.

Recovery from Hemorrhage and Chemo Leading Up to TIL

The last I posted was during my recovery from the hemorrhage, which coincided with the first dose of chemo. I recovered completely over the subsequent days, which…Read more

As for the procedure, I’m assuming you’ll be having a CT guided bronchoscopy under gener…Read more

Ed – Yes Dr. Betof told me about this. That is why she is willing to skip a dose or pull the plug on IL-2 if I have a strong reaction. Thanks for pulling the data to support that…Read more

Well things got off too a rocky start. The first dose of chemo (cyclophosphamide) took a toll. That plus not stress dosing my hydrocortisone (adrenal-insufficient) led to the brain met bleeding. My wife was my champion while I was in the throes of headaches, nausea, lethargy and utter brain fog on Friday…Read more

I’ve noticed that there is not a ton of information on these boards from folks who have been treated with TIL. For those who may want to know what the experience is like, I’m going to share mine.

I am participating in the following trial at Memorial Sloan Kettering in NYC: Pilot Trial of Autologous Tumor Infiltrating Lymphocytes…Read more

I’m stopping by with a quick update and question for those interested. See question at bottom regarding mixing immunotherapy with other immunomodulators treating autoimmune disorders (psoriasis).

Update on treatment – low does ipi combo + high fiber diet

After 1 year of stage 3A/3B adjuvant Nivo, I progressed to Stage IV with 1…Read more

He and Dr. Lipson agreed that moving forward with low-dose ipi + nivo combo will be the best approach now and, if no results, revisit the clinical trial…Read more

This is my first time posting, but i’ve definitely been reading and benefiting from this board over the past two years. Long story short, but I have been Stage 3a since 2019 (NRAS),  was on adjuvant nivo for a year through January 2021. I finished with hypophysitis, but was NED.

In April 2021, a ct found a .5 cm nodule in my left lung,…Read more