Monday, October 19, 2009

Time for a new course of treatment.

We met with Dr. Winegarden today in Ann Arbor to discuss the results of the CT scan from Friday. The scan showed progression of disease, meaning that there was some growth, and some new sites. There were a few new nodes in my lungs (about 4-5). They were all very small; one was 1.5 cm while the others were all about 5 mm. The tumor in my chest (mediastinum) was slightly larger. Previously this one had not grown. The tumor in my abdomen was unchanged; it was about the same size and still appeared cavitated (indicating potential necrosis or cell death). This all indicates that the cancer has gotten worse, but thankfully, not by very much. It also means that I am out of the study in New York. Dr. Winegarden spoke with Dr. Feldman in NY and Dr. Feldman had said that the rising trend of my tumor marker was likely enough to drop me from the study, but clear evidence of new cancer growth on the CT scan certainly meant that the treatment was not working and I would be dropped from the study. While this was not the news that I was hoping for, it was at least clear. One of my hopes that no matter what the CT scanned showed, that it was at least clear and would help us make a decision. It is clear that it is time to move on from the treatment in NY.

Dr. Winegarden suggested that we go ahead with the oral Etoposide. This is the treatment that Dr. Einhorn had suggested prior to us finding the study in New York. It is one of the same drugs I received in my first regimen of chemo, and in the high dose chemo in Indy. It would be administered in a pill twice daily. It is a lower dose, but I would be receiving it much more frequently. This means that it would be a more constant dose over a long period of time. I would likely start it next week. The main side effects are lowered blood counts (nothing new there), and nausea. The cold-induced neuropathy should go away with time, hopefully quickly.

I will also have another MRI of my brain on Wednesday to make sure that nothing has spread there. We don't expect that it has, but we don't want to miss anything either.

I have a good feeling about this treatment, because is seems to fit with what we think may be an explanation to my tumor marker roller coaster. One of the theories was that I was metabolizing the drug too quickly. I would receive a response from the drugs during the first week after treatment, but then the drug would be out of my system and the cancer would grow during the second week. This was also a theory as to why I didn't respond to the original treatment (BEP). I had very mild side effects compared to the average patient, which may have been due to the fact that my body metabolized the drugs quickly. This meant that they were out of my system too quickly to cause the usual side effects, but also meant they didn't have enough time to work against the cancer. If this is indeed the case, then giving myself a smaller dose of chemo twice a day seems to make sense. I may still metabolize it quickly, but I will be constantly replenishing the drugs in my system. We may not know if this drug will work on my cancer, but we should be able to keep in my system for a longer period of time.

There is also another clinical trial in New York that should be available in about 8 weeks. It is another Phase II study and it is a oral chemo as well, which means less frequently travelling. Hopefully I will not need that, because the Etoposide will work, but should we find that it is not working well enough then we may have another opportunity on the horizon. Dr. Winegarden said that it is an exciting new drug that would be worth looking into if we needed something else.

All things considered, I am not too upset about today's news. Certainly, I would have loved to hear that the treatment was working and the tumors were greatly reduced. On the other hand, I am thankful that it was clear. The cancer has not grown much, just enough to be clear. I was not looking forward to a winter with cold-induced neuropathy. Of couse, if it was working, I would have been happy to endure whatever that chemo threw at me, but I can't imagine it would have been much fun. This chemo and the travel was much more taxing than what I had before, and was truly affecting my quality of life. Part of me is relieved that I do not have to endure it anymore. What is really clear is what I have been saying for weeks, I am better now than I was a year ago. Last year on this day I began coughing up blood. This prompted me to see my doctor the next morning, instead of waiting 4 days for my scheduled appointment. Tomorrow will be the one year anniversary of the day they found the tumors. Today I am tired and am dealing with neuropathies, but I am not in pain and I am not coughing up blood. We still do not know what the future will hold, but we know that I have come a long way and am ready to keep going much longer.

Thank you all for supporting me this past year. Thank you for the well wishes, the happy thoughts, and for all of the countless prayers. They are working, maybe not as fast as we would like, but they are working. We clearly are not in control of the timetable, but we will keep fighting until we win! Year 2, here we come!

5 comments:

Unknown said...

Matt,

So sorry to hear that the trial treatment in NY didn't kill off the last of this beast. Nevertheless, I continue to be inspired by your courage, strength and outlook during this fight. Know that you, Megan and Ethan are in my thoughts and prayers. FLH!!!

Mark Altman

Anonymous said...

Dearest Dr Matt, Megan & Ethan...How well I remember this time from last year..it felt to me what a knife in the heart would be.You were then and still are today one of the most amazing men I will ever have known in my life.To know that your family life with Megan & Ethan has only been strengthened fills me with much joy! I continue to ask God to bless and strengthen all of you. I bet Ethan is becoming quite the little guy. Somewhere out there your healing is on its way...I'm glad you have the patience to wait upon the Lord. My love to all..Cindy

Danielle said...

Matt...You continue to inspire me with your strength and your chin held high!!! Good luck with your new course of therapy. I will continue to keep praying for you. I know family is #1 right now but if you are feeling up to it and happen to make it to the Detroit District Dental Review Nov.19th-21st please ask someone in registration to find me, I would love to see you. Bring Megan and your little man, Ethan for a visit...
Livestrong!!!
Danielle Ruskin

Anonymous said...

Be strong!

We are thinking about you every day, hoping for the best.

Go Blue!
Heather (Fred's "mom") and Steve

Andrea Scott said...

You continue to be an inspiration, Matt. I'll continue to pray for you and your family. It was wonderful to get to see you and meet Megan at the Notre Dame game. Keep fighting!

Lots of love,
Andrea Scott