First and foremost, we begged and pleaded to God for this. So yes, we must thank Him first. For the most part, it is what we had hoped for! It wasn’t a slam dunk by any means, but it wasn’t devastating either. I’m reserved in my emotions, but also very happy! Prayer is powerful, time and time again. We might just be ahead of this disease once again. Third time is a charm, right? Thank you God.
Consult reports are also attached. The case is very frustrating, confusing, and inconclusive. We don’t know what is going on, but if everybody is on board, I do want to treat whatever is or isn’t aggressively. I want to live. He kept calling it stable pleural disease, but then went on to say normal protocol calls to wait and see. The report reads different (after all the words, it somewhat reads NED), and for a PET scan, it is a good report.
The reports have a lot of words, so I will go over the “Impressions” section. All in all, it is a very positive report.
Impression 1: This is and always has been the most concerning. It is the pleura and what tested positive on frozen and negative on permanent pathology from lung surgery. It is still very concerning. However, it is very low in uptake and almost immeasurable on scan. As Dr. Ravi reported, it’s microscopic and small, which are very good things if this is disease. The increased uptake noted is most likely stable as it was obscured from the scan last time due to my left ventricle in my heart (remember, my heart is shifted down and to the left). All areas to be watched VERY closely.
Impression 2: This once again is most likely the thymus. It is very reassuring that not a single thing has changed. Most likely benign and reactionary thymic tissue.
Impression 3: The nodes that were of elevated concern on the last PET scan have decreased in activity. This most likely suggests a benign, inflammatory condition.
Impression 4: Excellent news! I just received Gamma Knife, and now the lesion is undetectable!!! Thank you God. However, my follow up MRI in two weeks will give us a more clear and definitive answer.
The BIGGEST thing in all of these results is that all of these findings and comparisons are done on no treatment – pure leap of faith and trust in God. No treatment and nothing changed, and mostly improved suggesting benign conditions!!So now what. He gets fired up pretty bad about the US healthcare system and the way it works. A multi armed approach, even for immunotherapy, needs to be attacked from more than one angle as biology is highly adaptive even in tumors, as we all know. In other words, just doing IL-2, or just doing any of these wonder immunotherapy treatments as a singular entity, isn’t the best option. It still MIGHT work that way, but we get so frustrated because of the red tape on trying to get the exact protocol for our specific disease. He said it best when he spoke about the fact it would be so nice if it was just a fight against nature, but it isn’t. I’m not getting political. It’s a fact with the US healthcare system straight from all of my physicians, but there are many, many good scientific reasons for why some things are done the way they are. However, I get very angry and frustrated, as do other patients in my cohort as well as physicians, when we as a group want to try a regimen that everything points to it being worth a try. In other words, an experimental combination for such a small cohort should be allowed, but it is not for many reasons, and expense is one of them.For instance, he has an angiosarcoma patient (he talks about in the consult) who is doing a self-defined treatment in India – one that Ravi designed as he was asked by this patient and family – if you could design a protocol, what would it be without any restrictions. He went over it, and it’s what they are doing there because it would be impossible to do here. Unfortunately for us, this family is very well off financially and unless I won the lottery last night, is out of the question for me. So, where do we go from here? We just try to get into a trial of some sort even if it means as a single drug entity. Preferably, we want to do PD-1 trial. However, those are hard to get into for angiosarcoma. Next, most likely, IL-2 but it’s going to be very hard to get insurance to pay and it is a VERY expensive therapy – one of the worst.
With that said, Dr. Ravi wants me to meet with his boss, Dr. Hwu, who is one of the best immunologists in the world, and is the chief of the melanoma and sarcoma divisions. He is kind of a big deal. When Dr. Ravi is nervous about emailing him, you know he’s someone important! Dr. Ravi is also going to chat with Dr. Tap to see if we can get him onboard for IL-2. The more letters for insurance, the better!This is it in a nutshell, and we will pursue Dr. Tap’s PD-1 clinical trial for now, but I won’t get my hopes up for that one. We will than pursue IL-2, but I won’t get overly excited about that either unless insurance pays for it.Any and all comments, suggestions, networks/connections with people, bank accounts/lottery tickets are all welcome! Oh to be rich…..
Thank you for fighting with me. I am beyond exhausted and emotionally drained. I have a lot of fight left, and we are going to need every ounce of it. Thank you for trusting in the power of prayer. Thank you for loving us unconditionally and for being the most patient network of people I have ever known. You are all remarkable, and for that, I am forever grateful. I love each and every one of you so very much, from the depths of my soul and every fiber of my heart.
You define the word commitment. Your lives are the very epitome of strength, love, caring, and family. You are my rock, and as I always say, family is my cure. From my wife to my boys, and through all of you, God has given me another day to fight, advocate, love, learn, laugh, and live. Time is precious. Let’s keep showing this world through every single action we do and word we speak how wonderful it is to be alive today, this very day. We will always have each other.
I love you.