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.
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 have been following you since the beginning. Best wishes for clean scans the rest of 2023.
ReplyDeleteThanks for sharing this story Mike! I will read your previous entries to catch up on your story as I learn more about sarcoma. I'd also love to talk with you at some point to help better share your story (and learn more about what I can to do help people in your shoes).
ReplyDeleteHi Will. Sorry for the delay. That sounds great.
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