Wednesday, February 22, 2023

Post Surgery Update

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 fingers are crossed that we can move to virtual after this first follow up because I really don't enjoy the six hour drive up to Pennsylvania, but as always I'll do whatever I have to do to get the best care possible. The MRI I have performed is very specialized due to the steel plating so its possible that Penn may want it done there.

I'll have my chest scanned every 3 months. I'm also going to have full body CT scans every other 3 months. So in March I'm having a full body PET/CT scan. June will be chest CT. September will be full body CT, and December will be chest CT. I'm having a PET/CT scan in March instead of just a full body CT because the Cleveland Clinic wants to compare the hips to the previous PET I had in October to confirm there is nothing to worry about there.

The new diagnostic test that has been added to my continued followup is blood-work. This test is mostly used for colon, breast, and other more common cancers today. For sarcomas it is more experimental. But whether it is helpful for Ewing sarcoma or not, the test sounds pretty amazing. The tumor I had removed has been used to create a test panel that will be ran against my blood to detect the presence of circulating cancer cells. Potentially this test will be able to detect a recurrence even earlier than the scans can. VCU is working with Natera for this testing and you can check out this page for more info. The testing itself is very low effort for me, its free, and hopefully it can detect a potential next recurrence early. I had my first blood draw two weeks ago, and the plan is to have my blood drawn every 6 weeks. The phlobotemist meets me to draw my blood so I don't even need to leave my apartment.

Luckily I have a good paying job and great benefits at a company that has been very generous to me over these last five years. They've been very accommodating about missing time for doctor's appointments, scans, bloodwork, chemo, and their related side effects. I've received lots of support from my co-workers and they truly care about my well being to which I'm very grateful. And throughout all of this I've grown a lot professionally. I've been able to achieve my goals, I've had great mentorship, and I've learned so much. I just recently had my 3rd promotion since joining the company. It definitely made me feel great to hit that milestone because even though the cancer is trying its best to throw me off track, that achievement is proof that I'm still moving forward.

Academically and professionally I have been very resilient these last ten years. Recently I've become more self aware that there are other aspects of my life that could use more attention, but I'll save that for another post. There is a lot to unwrap with that one and its very much a work in progress now.

Lastly, the arm is doing pretty well. I have no pain related to the surgery. I still have numbness however. My pinky feels pretty close to perfect which to me is most important with the work I do, but the side of my arm and side of my hand are noticeably numb. The numbness has improved a lot since the surgery, but it feels like the improvement has mostly plateaued over the last month. I've been in contact with my doctor about this and physical therapy might be a next step. One interesting thing though is that electrical stimulation won't be an option. There have been studies that have shown that electrical stimulation can stimulate cancer cells to grow and we don't want that. If the numbness never gets any better than it is currently I would be 100% able to live with that. I just never want to deal with the cancer in my arm again.
I hope you all are off to a good start to the year. Its been a warm week here in Richmond and I've been taking advantage of it with some walks at the park. As always please keep those battling life threatening illnesses in your prayers.

Monday, December 26, 2022

Relapse #4

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 been 9 years since surgery this must be something else right? If this is Ewing's what does this mean for treatment? Is this spread elsewhere?

First thing the following morning I messaged my oncologist at VCU and they scheduled to see me 2 days later. She felt around my arm and felt a lump that was round and movable. They were not too concerned about it (a common theme for me it seems). With it being nine years since removing the initial tumor from the arm, and the characteristics of this mass, the thought was this was an enlarged lymph node or some other benign lesion. To be on the safe side we added a CT of the right arm to the already scheduled CT of the chest for the following week.

The CT of the chest came back clear! The CT of the arm showed a mass that was 1.9cm x 1.4cm x 2.5cm. My care team was still not convinced this was a recurrence, but were not sure what it was. At the time we thought about a biopsy, but the problem was that the mass was poorly located next to major nerves and veins. We opted to go for a PET scan next before going with a biopsy to avoid risk. A PET scan was then scheduled for late October.

The PET scan lit up in four spots; both of my hips, a lump on my face, and the arm. I'll discuss these spots in a second, don't freak out. We still were leaning towards this not being a recurrence as the the lump in my arm had an SUV max of just 2.6. Over 5 is concerning for a sarcoma, 2.6 is low, but still possible to be Ewing's. I should know, the original tumor back in 2013 was just 3.1. I was given the option to either watch and wait for another scan or to biopsy it. I elected for biopsy and that was scheduled for early November.

One week afterwards, the biopsy results were in and they came back positive for Ewing Sarcoma. It was officially back again. My care team was shocked. Despite all of the assurance I was receiving I think I can safely say that me and those close to me knew this result was coming. The nodule itself wasn't painful or hot like I remember the first one being, but the fact it was right where the first tumor was located was hard to ignore. Anyway, at this point I wasn't as upset as might be expected for such bad news. I had already pretty much accepted it by that point and just wanted to get a plan together. So thats what I did next. I reached out to my oncologist in Cleveland and my original surgeon at UPenn and set up appointments for both the following week in mid November.

I first had a virtual visit with my oncologist at the Cleveland Clinic. He had concerns on the face lump and hip which surpised us, but wanted to see what my team at UPenn thought about it. We also discussed chemo and the potential for radiation if the tumor can not be operated on. Before making any definitve plans on systemic therapy however we needed a plan on local control. So next I traveled up to Philadelphia to meet with my original surgeon. She connected with the oncologist at Cleveland and came to the agreement that the hips were just lighting up because they surprisingly have not fully healed from the bone graft procedures in 2013-2014. The face lump was also highly unlikely to be Ewing's as it has been there for years now with very little change in size. Sidenote, I am going to be getting the face lump removed as it is very annoying when shaving, but have to take care of the cancer stuff first. That leaves me with evidence of just one spot in my body of cancer. Pretty great news all things considered. I always think this; I've been threading the needle between being unlucky and lucky all at the same time. She was not fully able to assess whether this could be removed or not with the imaging I had so we scheduled an MRI for December 1st.

Days after the MRI I received the result that the mass was now 2.5cm x 2.4cm x 1.8cm. Growing, but growing slowly (for Ewing's). All that mattered was that it was operable, altough it would be a challenge as it had the thinnest of margins in between the nerves. Though radiation was also an option, the risk with radiating the area is that it could cause the cadaver bone to crumble, necessating major rework. With full trust and confidence in my surgeon I elected for surgery.

On December 13th, nine years and 3 days after the original surgery I sat in the same hospital waiting to have a tumor removed from the same location in my arm. And that we did. The surgery itself took around 1 hour, a farcry from the 6+ hour surgery the first time, but don't let the overall time make this seem straightforward, it was anything but that. Turns out the mass was actually connected to the nerves and required it to be tediously (surgeon's words) peeled off of the surrounding structures. When the surgeon met my parents in the waiting room, she just gave a sigh and explained how difficult this ended up being. One thing to make clear is that the tumor was removed with just a 1mm margin around it so very little healthy tissue was removed. No impacts to the humerus either. Other than pretty bad nausea I was not too bad after the surgery and was able to travel home that same day.


Last week the pathology report showed that the margins were clear. Yay!, but with it being so close at 1mm, my surgeon explained that radiation might make sense to reduce the risk of this coming back. There is definitely some risk, but she said that if it were her she would instead elect to watch this and then radiate it if it does come back. As for chemo UPenn recommends no chemo, but also explained it could be beneficial for the same reason as the radiation. The tumor size on the report is 3.2cm x 2.5cm x 1.6cm so sadly it grew again. To come to a conclusion on these treatment options I am meeting with my oncologist at the Cleveland Clinic this week for a virtual visit.

As for how I am doing right now, I have some pain and numbness in my arm. I have a followup at UPenn this week and will hopefully have some reassuring news on this because this has been harder than I expected post surgery. The pain is generally not too bad, but the numbness is. The numbness runs along the entire underside of my arm and extends to my ring and pinky finger. It is really bothering my fingers to just type this blog post. So many typing mistakes and achiness in the arm. I'm hoping this improves as the swelling in my arm goes down. Maybe the ulnar nerve is being compressed or there is some damage to the ulnar nerve that needs to heal from the peeling of the mass. I'll find out a lot more this week and will include those details in my next update.

Some final thoughts. The whole workup to diagnosing this tumor and the surgery felt like a repeat of 2013 to us all. We did not take this well. Like I mentioned earlier this recurrence just felt "different" than the previous ones. I was always really afraid of this coming back to my arm. Having this return to my arm means that the three months of chemo following the original surgery + the 6 months of chemo I received after my 2nd recurrence + the 9 months of chemo I had with my 3rd recurrence was not enough to knock it out. That is a tough pill to swallow and something I can't get out of the back of my head. With that said, at this point I'm lucky to have had the opportunity to blog about this for all of these years. Would I rather be giving you all nice yearly updates with an all clear? Of course, but that just hasn't been the path that has been set for me. I have a functioning arm that hopefully will only improve with time and I have an all-star team of doctors that will get me across the finish line. And most importantly I have supportive family and friends that will continue to support me. I'll say it again, I've been unlucky, but also lucky. This is a setback, no doubt about it, but I'm cancer free right now, and that means I'm still winning.

I hope you all enjoy the holiday season. Also please keep those battling life threatening illnesses in your prayers.

Tuesday, January 18, 2022

2021 Review

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 of a safety blanket for me in that I would be ready to go with chemo immediately on a recurrence. But at the same time I'm very glad to not have it anymore as it proves to me that I'm making forward progress again. Keeping it would only hold me back.

I was pretty busy last year. I went to many sporting events like the Penn State vs Indiana football game which surprisingly was my first time on the campus since graduating in 2017. My brother is a student there so I will have more of an excuse to get there more often now. And of course it was great seeing Beaver Stadium full again this fall. I went to a few minor league baseball games. Of the games I went to I really enjoyed going to see the Lehigh Valley Ironpigs. The food and stadium were really nice. They have a bacon theme so they have food options like bacon on a stick, and this sandwich with pulled pork, ham, and bacon. They call it the 3 little pigs and it was delicious. We went to the beach in the summer which was a lot of fun. The water was great, a lot warmer than the last time we went so we were in the ocean a lot. This fall I kept busy with watching college football, managing my fantasy football teams, and went to see some comedy shows.

I've been sticking to the kettlebell exercises and they have worked great for me. I've kept on schedule and haven't had any injuries or setbacks which is better than anything I've really tried post arm surgery. I get decent cardio from it, but in the late summer and fall I went to the park once or twice a week to walk the trails for a little bit extra. Being in better physical shape has been a goal of mine since my last recurrence. I believe that the conditioning I was in contributed at least a little bit to how well I tolerated the treatment. God forbid I recur again, but if I do I want my body to be ready for the pounding.

I still have not returned to the office and as of now there is no return to office date. It has been a real disappointment not being able to be in the office, but it did give me ample time to visit family throughout the year. I especially enjoyed getting to be around Peanut as I know he enjoyed my stays also. He is the first dog my family has had and he is the best!


Please stay safe everyone, and as always keep those battling life threatening illnesses in your prayers.

Saturday, March 6, 2021

One Year Scans

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 summer, (about two years after completing my most recent radiation treatment). To me getting the port out has more of a symbolic meaning to it. It is more than being done with the inconveniences of having it, it is being one step closer to being done with this disease.

In my last post I mentioned that I purchased a kettlebell to exercise with. Well, I'm still keeping up with it. I've been exercising 5-6 times a week and feel great. A lot of the exercises I perform are dynamic full body movements which are easier on the joints, the most important being my right shoulder. I don't run into the same amount of pain that I have had when doing traditional barbell training which is a huge reason why I have stayed dedicated to this routine. I'm really glad to have found a workout routine that works well with my body. I'll provide some more details about this in a future post, but just know I'm continuing to get stronger every day and that I feel the best I have in years.

I'm still working from home and the plan from leadership is that we will be working from home through labor day. Receiving that news was disappointing to me, but I am making the most out of it such as visiting family. I'm really excited to visit them soon since they just got a puppy. His name is Peanut.

Please stay safe everyone, and as always keep those battling life threatening illnesses in your prayers.

Sunday, September 20, 2020

Six Month Scans

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 working from home since. While I have been really disappointed in not returning to work in the office I have been able to do some things I would have otherwise been unable to. For example, I spent a lot of time with my family this summer. My brother lived with me in Virginia for the month of June, and I stayed in Pennsylvania with family for all of July. I really enjoyed this summer. Basic things like swimming in the pool and laying out in the sun were the things I enjoyed the most.

Some of my goals for the year such as getting in better shape/stronger have been more of a challenge, but I have worked around it. I wanted to join a gym, but they have all been closed and only recently reopened. With gyms being closed, it was really difficult to find home gym equipment, but I was able to purchase a kettlebell. I have been training with that since I returned in August. I also took advantage of our home gym when I was home in July.
 
I will be working from home for the rest of the year so I will need to find some more things to do. I am all caught up on videogames I had been meaning to play, and there aren't a lot of tv shows I'm interested in. I'm pretty excited for football returning. It was a nice surprise that the Big Ten announced that the season will be starting this fall. I was really dissapointed that Penn State would not have a season, so this certainly livens up the fall for me as well as many others. I'm in a couple fantasy football leagues so that will keep me busy as well.

Looking forward, my next scan is coming up soon. I'll just have a chest CT this time, so I should just be right in and out of the hospital. Let's keep the streak of good scan results going!

Take Care Everyone

Friday, March 6, 2020

Treatment Complete

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 is that I did not complete what I signed up for. I wanted to do 6 months of Doxil + Temsirolimus. I believed in that regimen. I read the research paper. My oncologist in Cleveland believed that it fit me well. Unfortunately those drugs just didn't agree with my body. I never had delays or dose reductions with prior chemos, but I had dose reductions, a drug elimination, and delays with this one. With this being my third relapse I needed things to just work.

Though things did not go according to plan, they have (knock on wood) worked so far. I have had three clear scans in a row with potentially a fourth soon. I completed eight cycles of Doxil and seven weeks of Temsirolimus which we can all agree is much better than nothing. I had my heart tested for damage, and and it was perfectly normal which is great news for someone who has had a lot of Anthracycline agents (Doxorubicin, and Doxil). And most importantly I got to complete treatment. Most people don't ever get to ring the bell on a relapse for Ewing's. I've done that twice now.

Since completing treatment I have been trying to get back to feeling normal. It seems like everytime I get to this point where I start exercising, getting more energy etc., I relapse. I'm still going to keep trying to get back in shape. It's been a long time since I've ran a full court pickup game of basketball. I think that's what my next big goal is going to be. I've been going to the park once or twice a week the last couple of weeks and walking the trails. I know it sounds like I'm old, but I have to start somewhere right? If my next scan comes back clear I'm also going to join a gym. I've lost a lot of muscle mass from the lack of physical activity for so long, and it would be great to improve on that. There are a few gyms close to my apartment and I found one that I want to join.

Last thing. Below is another one of those cheesy certificates for completing chemo. Hopefully I don't have to try to earn another one.