Yesterday morning, I had a pair of scans. The first was a CT scan of my chest. The second was a PET scan of my whole body. The CT scan looks at my lungs in detail; that's the most common area for Ewing's tumors to spread. The PET scan tracks the uptake of a radioactive sugar injected into my bloodstream throughout my body. Cancer cells take up sugar faster than normal cells, so they show up the scan as areas of dramatically increased uptake of the sugar, which can be tracked through the sugar's radioactive decay.
The PET scan turned up completely clear, which was great to hear. On the CT scan, the radiologist identified three suspicious spots, all very small. These same spots showed up on the chest CT that was part of my initial set of scans back in January. They were determined to be inconclusive for metastatic disease (they did not show up on a PET scan that was taken three days prior to it), hence the "no definitive spread" comment in my first post. Two of them were about the same size as many other tiny spots that appeared on the scan that raised no alarm because they were identified as being part of the natural structure of my lungs. One was larger, estimated at 4mm in diameter on the first scan and down to 2mm in diameter on this scan. My oncologist showed the images to me and went over the results himself. The first set of scans were enough for him to put me on the year-long treatment protocol for disease with confirmed spread. This set, while still officially inconclusive, was enough in his mind to say that there was some lung spread as well. He's going to wait until the next set of scans, which will come after three more cycles, to make the determination on this course of action, but he's likely to prescribe a 10 day course of radiation therapy for my lungs after chemo is done to kill off any cancer cells there that it happens to miss.
The official word from my oncologist was that the results were very good. My family was definitely pleased. It took me a bit of time before I'd comfortably reached this position. I was hoping that the lung spots were instead going to be found to be definitively not cancer, or if they were cancer, that they were so responsive to chemo that they would vanish instantly. I had to reflect on this some more. My oncologist has seen many cases of Ewing's sarcoma over the course of his medical career. It's an aggressive cancer, so I imagine he's seen a number of cases where there's spread and it spirals out of control, and that was a fear of mine going into the scan, that more spots would show up. So really, this is something to be happy with, that the disease is currently under control. It's natural to want the very, very best possible outcomes, but that train left the station a long time ago; otherwise I wouldn't have gotten cancer in the first place!
Now, it's onto cycle number four as planned, which starts this coming Monday. I'm getting a different pair of drugs this time, called irinotecan and temozolomide. It's still going to be a three week cycle, though I will get the irinotecan over 10 days (Monday through Friday of the first two weeks), with temozolomide during the first five days. In terms of nausea and their effect on my blood counts, these drugs are not supposed to be as hard as the combo I received during my first three cycles. The thing to watch out for is that irinotecan can cause diarrhea. I have compensatory medicines all lined up -- there's an antibiotic that's supposed to kill off enough bacteria in my intestines to prevent them from activating the drug (irinotecan is actually a "prodrug" that gets converted into an active chemotherapy drug by the liver, but intestinal bacteria can also activate it, which is the cause of the diarrhea), and activated charcoal as well as another layer of defense. Hopefully, this will be enough. There are other medicines if this is not the case, but hopefully I won't need them. I'll have more details on the subject next week. One more thing I'd mentioned earlier -- I was originally slated to get my temporary prosthesis two days ago, but due to a delay in insurance approval, this did not happen. The approval just came, but thanks to my chemo schedule, this means I won't get the prosthesis until three weeks after the original day. Not to worry, though: the prosthetist told me that the temporary prosthesis will be mostly like the test socket, only smaller to account for further shrinking of my residual left leg, so I can keep getting practice with the test socket and not miss a beat.
Hormie, I'm so grateful that you're keeping us in the loop. And even thought things aren't going as fast or as smooth as you would have liked, that everything is looking better and better. It's a long road, but we'll be traveling it right along with you.
ReplyDeleteSo a few weeks ago I saw a show where people were getting their prosthesis painted. Then a quick google search lead me to this: http://www.geekologie.com/2011/03/guy-loses-leg-opts-for-cyborg.php . How cool is that? I know you'll be waiting awhile, but maybe when your permanent prosthesis comes through you could personalize it? Tekhte or something even more awesome?
Hi Hormozd jan! It's been far too long since I've had the chance to see you or catch up since our Cal ISCO days and ihouse gatherings. I just saw your post on facebook and read through your blog updates. I'm sorry for everything you've been through but so inspired by your spirit and your optimism and courage. I live in Boston until the end of May (not too far from NYC at all) if there is anything, absolutely anything I can do to help please don't think twice about asking. I haven't had the pleasure of meeting your fiance but she sounds like an absolute gem! What an amazing fighting team the two of you make. I'll keep you in my prayers and keep checking here for updates. -Tala
ReplyDeleteDear Hormozd! I cannot imagine the shock that comes with a diagnosis so unanticipated, but I'm happy to say that you look amazingly strong with a big smile just like the IHouse takhteh days. I am inspired by your strength and big heart. Wishing you a quick recovery and for every day to get brighter, stronger and more colorful.
ReplyDeleteShomace
Hormozd jaan. I did not know about your situation. Thank you for sharing it on the facebook. I am sad to hear the news, but extremely glad about your recent test results and I am sure the rest of it should not be a concern. I am amazed by your strength. Keep it up until complete recovery.
ReplyDeleteIt takes time, but success is possible.
ReplyDeleteAll you can do is keep fighting.
Dear Hormozd,
ReplyDeleteWe have just discovered your blog and so appreciate your sharing your journey back to health with your friends and loved ones. You are an amazing person (of course, we have always known that) and truly an inspiration for us. We miss you so much on Wilshire Court. With love, Rita and His Honor
P.S. We miss your jokes about Arnie on the bench!
'Mozd! I just found this via your facebook post and I want you to know my thoughts and support are with you. It's been so long since I've seen you and despite this bad news, I am comforted to see the same dauntless happy guy I remember from high school. Take care of yourself!
ReplyDeleteHi,
ReplyDeleteI have a quick question about your blog, would you mind emailing me when you get a chance?
Thanks,
Cameron
cameronvsj(at)gmail.com