Tuesday, July 25, 2017

The Next Chapter of Treatment

It has been a long time since I have updated on here. In part because I was just not sure what to say. The last time I gave an update was just over Facebook saying that things looked to be going great! At my 30 day checkup, I had an incredible response to the T-cell therapy. All tumors were shrinking and one of the target tumors was completely gone. This was some of the best news we had ever received following any treatment. Despite the news being so good, we have learned to always be cautiously optimistic. I am very realistic about my disease, and while I am always hopeful to find a "cure", I know that it is more realistic to treat my disease as chronic, and something that I will likely be fighting forever. What we were hopeful for was some reprieve. An escape to normalcy for a longer period of time. But, that is not in the cards quite yet.

We found out at my 60 day scan that I was now having a mixed response to treatment. Some of my tumors are continuing to shrink, some are stable, and some are growing. Unfortunately, one of the tumors that is growing is located directly behind my heart. It is actually tucked between my heart, esophagus, spinal column and inferior vena cava. These are all pretty vital structures! I didn't know how to feel after this. I was of course upset that this one tumor that isn't responding is in a terrible spot, but I also knew we had made a lot of progress with the rest of my disease. I was angry but still hopeful that we were on the right track. I just knew that we were not getting the reprieve we had been waiting for.

The next step will be proton therapy. Proton therapy is a type of radiation therapy that is extremely accurate. It can limit the exposure of healthy tissue and the beam does not exit the tumor. Unfortunately this treatment is only offered in a few places around the country. Memorial Sloan Kettering works with a place in Somerset, NJ which will be where I will receive treatment. I will need to stay in NJ for approximately 5 weeks starting on July 31st. My insurance does not completely cover this treatment and I will need to provide my own lodging for my entire length of treatment. For these reasons, we have set up a youcaring page for anyone that would like to help with the cost of this treatment. It is extremely hard for me to ask for this type of help, but this is a difficult expense for anyone to take on. If you would like to donate to my care please go to:

 https://www.youcaring.com/jacobmadonia-886389?utm_campaign=buttonshare&utm_medium=url&utm_source=copy&utm_content=cf_cp_01

I will be heading down to NYC this week to follow up at Memorial Sloan Kettering and then I will be driving down to New Jersey to start treatment on Monday July 31st. I will do my best to post some periodic updates on how treatment is going. As always thanks for reading and following my journey. I appreciate all of the love and support from all of you.

1 comment:

  1. I am checking with people I know down near your treatment center in New Jersey for any additional information for places and services that allow people to stay. Warm wishes, I will keep you posted if I learn anything more. Will hold you and your beautiful family in my prayers.

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