Friday, February 16, 2018

Proton Therapy Progress, Chemo, and Possible New Adventure!

Hello everyone. A lot has been happening treatment wise since my last post. I will be starting my 3rd round of proton therapy on this particular tumor. We have been treating this large tumor in the right upper lobe of my lung since December with what is called quad shot proton therapy. Basically I go to New Jersey for this extremely precise type of radiation about every 4 weeks to get 4 treatments. I posted a whole blog about what proton therapy is previously if you are interested. So far, the tumor is responding well. The picture below shows the tumor volume in blue. This is the difference after 2 treatments. You can see this is and was a very large tumor. This was causing me all of those symptoms back in December when I was unable to get out of bed much. Today, my symptoms are much better and I can actually function through a whole day pretty normally. Being that compromised from this tumor was a first for me and honestly, very scary. It was debilitating not being able to do anything without coughing and being short of breath. I was tired all of the time. Thankfully we were able to get this treatment and find a way back.


This is not the only tumor I have. There are other smaller tumors along my right chest wall that cause some pain, but are not effecting organ function at this time. I also have a large tumor behind my heart. This is the trouble maker. We hit this tumor with proton therapy back in July and it did respond. However, because of it's location, we can't continue to radiate it. My esophagus was effected the first time and the risk of puncturing that along with my heart and the big blood vessels around it is to great. SO that leaves chemotherapy, surgery, and trials. I have failed every first, second, and third line chemo treatment available except one cocktail that we are trying now (Gemzar and docetaxel). This has not shown great results in synovial sarcomas but some cases have so we are adding it to try to both assist the proton therapy and control the tumor behind my heart. That tumor is very difficult because of it's location. It is behind my heart and pressing against my inferior vena cava which is the big vein that feed the heart from the lower body. This can cause a lot of problems as you could imagine. The big concern is my liver backing up from the impaired blood flow. They were considering placing a stent in the vein to keep it open, but that is not an option at this time. Instead I am on a low dose steroid that is helping keep the inflammation down which will alleviate some of the pressure from the tumor.

The good news is there is a surgeon in Houston, Texas that specializes in removing these types of tumors. He actually tends to see a lot of angiosarcomas which is a different disease pathology than mine. Angiosarcoma initially presents around the heart and can invade the heart tissue, making them almost un-treatable around the country. This particular surgeon has developed a technique to remove the heart in order to get to these tumors and then put the heart back in. Basically, he does a heart transplant with the patients own heart. I have no guarantee that he will operate on me but he has seen my case and is willing to meet with me to discuss the possibility. We don't have an appointment yet as we are going through all of the insurance approval stuff that goes along with seeing a surgeon in Texas. You can imagine that there are some hoops to jump through. While I feel fortunate enough to have insurance that will cover part of this, it is still mind boggling to me that someone in an insurance office will make the decision on weather or not they think I deserve to have this meeting with a doctor who could prolong my life simply because I live in a different state. If you truly think that our system currently allows decisions to be made between just patient and doctor, you are sorely mistaken. I also have some of the best insurance available thanks to my job, so I can not imagine what people who are not that fortunate must go through when these decisions need to be made. Just some food for thought. So hopefully we hear soon about our appointment so we can book our trip to Houston and see what happens.

For now, I will get round 3 of protons next week, followed by the next cycle of chemotherapy. Lorrina and Nalina will be joining me this time as Lorrina is off work. It will be nice to have the company and we will enjoy Somerset, NJ as much as we can for a few days! Our big mid winter vacation! We were trying to plan a few days to Florida to just get away that week, but our timing with treatment is never good. One day, we will sit on a beach sipping a drink, but it will have to wait for now.

I will keep you all posted on the next step. Thanks to everyone who continues to follow whats going on and for all the support, it means the world to us!