Mike Judge vs Ewing's Sarcoma

Since my last update I signed up to run a 5k! It is in support of the Sarcoma Strong foundation. My new surgeon from UT Southwestern is the race director and will be opening and closing the event with remarks. The run itself is at White Rock Lake which is where I have been volunteering to help cleanup. I'm looking forward to the event. It will be nice to meet others affected by this disease there. I've never participated in an event like this before so wish me luck. If you are able it is greatly appreciated if you can donate. You can do so here .

Hi everyone, its been a while. I think this might be the largest time gap between posts. I've had a tough time with this entry, coming back to it from time to time over the last several months. Every time I finished editing I just did not like it and scrapped it. Hopefully take 4 is the charm, lets get into it. Late in 2023 I became a 10 year survivor and also turned 30. It was a deep time of reflection for me. There were many questions I asked myself, but the most challenging ones included:  Why am I still here?  Am I happy?  What changes do I need to make to become happier?  Am I ready to make those changes?  What are my goals?  What has gone well these last 10 years?  What do I want to do better going forward? Very deep, uncomfortable topics and questions I had been stressing about, but avoiding for years. It was both empowering and deeply saddening to reflect on these topics. I hated to admit it at the time, but I was very unhappy. I was going thro...

Since my last post I have had visits with the Cleveland Clinic and VCU. As I mentioned in my previous post Penn recommended no chemo and left it up to me as to whether or not to have radiation. The same conclusion was reached at VCU and the Cleveland Clinic, so the treatment for this 4th recurrence is complete. Aggresive local control (surgery, radiation) has been the key with my case of Ewing's. My response to chemo has been more of mixed bag so I'm much more accepting about not doing chemo vs when I had my first relapse. So what's next? Very close monitoring with scans and a new diagnostic test that has been added to the schedule. More on that in a second. First off, the arm is going to be much more closely looked at than before. I'm not sure on the exact frequency schedule, but I have an MRI and followup at Penn scheduled in mid March. My guess is that the arm will be scanned for at least the next year, but I'll find out more in my next follow-up visit. My finger...

This year things were going so well. I had clear scan after clear scan. We moved the scan frequency to every four months because I was 3 years out from last finishing treatment and we were feeling like I was "safe". I was feeling the best I have since being diagnosed. I had a great streak going. Three and a half years of an anxiety inducing scan every three months that was fortunately clear every time. Unfortunately that streak just ended. With this being my fourth recurrence, it would seem that this would become easier, but this one was as hard if not worse than them all. Let's walk through how we got here. In late September I was laying in bed watching tv when I happened to feel a lump in my arm. It wasn't too large of a lump; around the size of peanut. Immediate panic set in. So many questions/doubts/concerns filled my head as I layed there for what must have been hours. Could it be back? How long has this been there? How could I not notice this earlier? It's b...

Coming up in a month will be my two year scans. It will really be two years and one month, but who's counting? With that intro I guess I probably already answered your main question. Am I still cancer free? And the answer is a resounding yes In the year since my last update nothing has really changed on the health front. I got my port taken out in May and that went really well. One thing that was different about getting it removed this time versus the last was that this time they didn't put me under. They just gave me a local anesthetic. Though I was draped and couldn't see what was going on, it was still weird to be fully awake while they were removing this thing from my chest. They gave me status updates on the whole procedure which helped. Overall the whole process was much better this time because it went faster and I was able to drive myself home. I was in and out of the outpatient facility in under two hours. I felt uneasy about getting it removed because it was kind ...

I recently had my routine scans and ...(Drumroll), I am still showing no evidence of disease. Very exciting and relieving news. I am so lucky and fortunate to be in this position. Lets keep the clean scan streak going. I am still having scans every three months, but will transition to every four months when I'm two years out from completing treatment. The next one is at the end of April. I still have my port installed. Occasionally I will notice it when exercising or my seatbelt rubbing against, but for the most part it does not cause me any discomfort. It is annoying having to get it flushed every six weeks. It is a simple procedure and only takes like 5 minutes, but it is an extra trip I have to take. We are a bit hesitant to remove the port due to my recent track record. The last thing we want is to remove it and have to reinstall it soon-after. To reduce the chance of this happening the best solution is to wait. During my last appointment we talked about getting it out in the s...

Around the middle of June I had a full body bone scan and chest CT scan and both came back clear. That puts me at six months cancer free. The last time I could say I was six months cancer free was..., October 2014. Great news! In late March I began having a difficult time breathing. Horrible timing on that one. Remember I had radiation for a lung nodule last May? One of the side effects that can occur up to a year later is radiaton pneumonitis, and that was the cause of my problem. The main treatment consists of steroids, but with the coronavirus going around my oncologist advised against them because they weaken the immune system. As an alternative, I performed breathing treatments with an incentive spirometer and a balloon. I also made sure to drink lots of water and took advil twice a day. Not sure if the water and advil part made a difference, but it took about a month to resolve and I have been good since. A week after my last post, my employer sent us all home, and I have been wo...

Long overdue for this update, but here it is. On my last update I was in cycle 5 and the plan was to go with 6 cycles of chemo, but since I was having problems with skin toxicity we decided to drop the dose back down to 30 mg/m2. During that time there was also some collaboration between my local oncologist and the one I've been consulting with in Cleveland. The oncologist in Cleveland wanted to go with another year at the lower dose with treatment every other month, and my local oncologist wanted to stop at 6 cycles. I decided to just extend it to 8 cycles and be done. The last three cycles weren't too bad with the adjusted dose, and I completed them without delay in early January. I had another clear scan in December which was awesome and made me feel better about stopping treatment. I have my first post treatment scan coming in a few weeks. Let's keep the clear scan streak going. Looking back at how this last chemo regimen went makes me feel uneasy. My big concern ...

So first let's start with the good news. My most recent scans came back all clear! The only thing that was on it was the nodule which was radiated and that is continuing to shrink. It measures just 2 mm now. With my last two scans being clear I have a new streak now. My last streak ended in December 2016, so this is really exciting! Right now I'm midway through cycle 5 and I plan on having one more round of Doxil. The plan will be finalized when I have an appointment with my oncologist on Thursday, but that's what I think the plan will be. Remember the original plan was 6 months of Doxil + Temsirolimus, so I think 2 months of that, then 4 months of Doxil alone should be good enough. Hopefully I can stop because I'm really burnt out and would like a break. As for current side effects, in cycle 4, some more of the skin toxicity showed especially on my feet, and it is getting much worse this cycle. I have a few mouth sores which are as bad as they were when I was on ...

Not long after my last blog post I had an appointment with my oncologist to decide what to do next and that is to go with Doxil alone. My oncologist recommended Doxil because he doesn't want me to burn through more chemos than is necessary. Trying all of these chemotherapy drugs can make the cancer more resistant and can also eliminate me from trials. Going back on Doxil isn't introducing anything new and is a treatment that can work well for me. I wish I could continue with Temsirolimus, but that is out of the question because it amplified the bad side effects from the Doxil. My oncologist said that the burns I had were the worst he has ever seen from these drugs. Going forward I will continue to receive Doxil once a month and the plan is to do a few more cycles. Also my dosage of Doxil is increased from 30 mg/m2 to 40 mg/m2 because that is the only chemo I'm receiving. So far I had two cycles of Doxil + Temsirolimus and just had my first cycle of Doxil alone. I have a CT ...

In my last post I let you know that I was having a tough time with the chemo. Well, it got a lot worse for me since then. The mouth sores got so bad that even with painkillers and the mouthwash it was still difficult to eat soft foods. In a little over a month I lost 10 lbs, and honestly it could have been a lot more if I didn't push myself so hard to eat. But as bad as the mouth sores were, the pain from those paled in comparison to the hand-foot syndrome. My armpits got a lot worse as did my groin. I developed the burns on my elbows, fingers, the back of my knees, and butt. Let me take through one of the hardest two week periods of my battle with cancer... Monday: I pushed myself to make it in to work the Monday it escalated. I was in a lot of pain. I remember taking Oxycodone twice that day of work just to get through it. Both walking and talking were so painful. I admit I was a little short with people that day. I was so frustrated with the situation. Tuesday:  On Tuesday...

I have finished cycle one of my current treatment. This regimen consists of two drugs, Doxil and Temsirolimus. Doxil is an enhanced version of Doxorubicin which I was on with my first line therapy. That was the "Red Devil" drug. Temsirolimus is a new drug for me and has been shown to sensitize treatment resistant cancer cells to chemotherapy. This drug combo was recommended by my oncologist at the Cleveland Clinic, and has demonstrated success in a phase II clinical trial for sarcomas. His belief is that the cancer that has been recurring for me have been cancer stem cells which have chemotherapy resistant properties. Infusions are every Friday with Temsirolimus administered weekly, and Doxil given monthly. For this treatment I did not have a choice but to get a port because these drugs would cause much more damage to my body if I blew a vein in my arm than the last therapy. Yes, it really sucked having to go and get a port again. I got that thing removed less than a mon...

A little over a month ago I had stereotactic body radiation therapy (SBRT) to a nodule on my left lung. Here is how that process went. In late April I had an appointment for a radiation consult at Penn. I met the radiation oncologist, learned about the procedure and signed the necessary paperwork to go forward with the radiation therapy. The doctor explained to me that I was an ideal candidate for SBRT because they could minimize the radiation to vital organs. Deciding to go with radiation over surgery was a no brainer this time. The nodule was in a bad spot and would require losing a lobe of my lung rather than wedges like the last two surgeries. After getting the necessary insurance authorizations which took a week, I had a simulation appointment. For this test, I had a CT scan of my chest for 45 minutes, and was instructed to breath regularly. This test is needed to measure how much the nodule moves when I breath so the physicists and radiation oncologists can better prepare...

Things have not gone well since my last update. I recurred again, and have been scrambling to get treatment setup. It's been a really stressful month, but now that I have a concrete plan I feel like I'm in a much better spot to post an update. This time it is a nodule on my left lung. A single pulmonary nodule like the last two relapses. I have already taken care of it so here is what happened. It was there in August. Missed by the radiologist, and was 6mm. I had surgery a month later for the spot in my right lung to get on Vigil trial. Had they found this nodule I would have likely been on the Vigil trial because I only needed one more vial of vaccine. As you'll see below it might not have been a great fit anyway as the chemo portion did not work. Also missed in November, and it was 8mm. Found a spot on my liver which was new, but likely to be a hemangioma (no problem there). Finished chemo in February, and had a CT scan. Still growing and now 1 cm. Missed again by r...

I have completed my 8th and final cycle of chemo. It was a challenging week of treatment, but it's all finally over. In a lot of ways my final week felt the same for me as it did when I completed chemo five years ago. I felt happy to be done with chemo and all of its side effects, but at the same time I felt anxious about losing my chemo "safety net." I was never able to figure this chemo out so I was probably more happy to be done with it this time. As much as I hate having to do chemo I know that is the only thing keeping the cancer from coming back. I just have to trust that the chemo did it's job now and that is a difficult challenge for me. Unlike last time I rang the bell at the end of my treatment. For those of you unfamiliar with this, it is a tradition for a cancer patient to ring a bell on their final day of chemo. I didn't ring the bell last time because I felt it was foolish to celebrate too early. Since then I have endured two recurrences requirin...

Tomorrow I start my eighth and final cycle. Here is how the last two cycles went... Cycle six went much better than cycle five. The Zantac helped with the bloating which in turn helped with the nausea. I'm taking 150mg twice a day. I take one pill with breakfast and one before bed. I also switched to Marinol for nausea, and that worked better than Ativan which I took during cycle five. Ativan seemed to just knock me out, and not do a lot for nausea. Marinol makes me sleepy, but also reduces the nausea substantially. Another new thing I did was eat an apple everyday. They helped my bowels move which helped with the bloating. Overall, it was an event free cycle. I threw up less than cycle five, maybe twice all week. My mom was here with me for the week because cycle five didn't go that well. But, as I mentioned above, cycle six went great compared to the previous one. Everyday when we waited for the valet to bring the car to the front, we agreed that I would be able to drive my...

Cycle five was basically a treatment reboot. New drug administration, new environment, and new side effects. Here's how it all went... The big difference this cycle was that I had my treatment done through IV rather than orally. This change required me to have my treatment at VCU. I expected it to be cramped at the infusion center since the waiting room is always crowded, but there was a lot of space back there. The nurses were really nice and great about getting my chemo started quickly. Things seemed to move quicker than when I was at Penn which was awesome. We arrived at 7:30 and left at around 12:30. The support services were great too. They had service dogs on two of the days, and a preacher on two days. I appreciated seeing the dogs. They really took my mind off of what was going on for a little while, and put a smile on my face. The treatment itself was both better and worse than before. The big reason I switched was because of anticipatory nausea. I was getting so sick ...

I start cycle five tomorrow, so here's how cycle four went... In short, cycle four went horribly. Lots of vomiting. Lots of stress. This might have been my worst cycle of chemo ever. It was bad right from day one. When I took the medicine I used the lidocaine mouthwash first, and then took the chemo with cola. The mouthwash worked great with the pills, but didn't do much with the horrible taste of the Irinotecan. The cola did just as well of a job as the cranberry juice, which is to say not well at all. I got it all down, and then went to bed. A few hours later I woke up and immediately rushed to the bathroom to throw up. I barely made it, but at least I didn't throw up all over the back of my door like I did last cycle when I was home in Pennsylvania. I wasn't even close to making it that time. I went back to bed afterwards, and about an hour later it happened again. And again, and again, and again. I lost count, but I threw up like eight times that night. I felt lik...

I forgot to post this a few days ago. Right now I'm in cycle four and an update on that will be soon. Since my last update I have finished my third cycle of treatment, and also had a CT scan. The results of the CT scan were good. There was no evidence of disease. I was nervous with this one especially since my last nodule showed up on the scan following my last surgery. The odds of that happening were probably much less than last year because I'm actively fighting it with treatment. As for the chemo I'm still struggling with taking it. I threw up more times this cycle than the last, but luckily still didn't throw up the chemo. I did much better with the nausea throughout the day, but the nausea at treatment time was just as bad if not worse than cycle two. For nausea I would definitely recommend taking Marinol because it worked much better for me than Zofran/Compazine. The only negative is that it made me tired. It will be a challenge taking it while I work, but I...