Brad Dx June 2020

[Naynay]

There have been some updates and changes to Brad’s treatment plan I thought I would share.

First off, Brad’s MRI results of the primary tumor in his leg came back. It did not show any drastic change in dimension, but the report reflected it seemed like less "activity" is going on inside of it. The oncologist said that this looked very promising and we’re hoping that’s yet another sign the pembro is helping the immune system recognize the cancer.

After a discussion between his team of doctors, they feel it's time to start aggressively treating the primary tumor. Since the nodules in his lungs have shrunk substantially during treatment, I think they’re hoping the next CT scan (in Dec) will show the remaining 2 nodules as stable or even better, completely resolved (fingers crossed!!). Brad will begin 5 weeks of radiation directly to his leg, followed by a 6 week break, then surgery to remove the primary. The radiologist and surgeon would like Brad to come off the immunotherapy during this time. His oncologist agrees since there are some risks involved with doing everything concurrently. She seems confident that his body has learned how to respond and hopes it will continue to work on the lung nodules without the drugs being administered every 3 weeks. Understandably, Brad is a little nervious to stop a treatment that's working, but the path forward seems like a neccessary one. His oncologist has assured us that post-surgery it would be no problem to put him back on so that does help reassure him. Brad had his last immunotherapy treatment over the weekend and will begin radiation in the next week or so. If radiation is delayed due to scheduling, they'll try to sneak in another cycle of pembro.

On a separate note, Brad was interested in donating his tumor to research once it’s resected. Has anyone on the forum gone this route in Canada? I think it would make him feel good to help the science that's been helping him through this ordeal.

[Janice]

Nay nay -

Check in with Doctor Wilky about the tumor donation.

https://breelynwilkymd.com/about/

[Naynay]

Thanks for the lead, Janice!

[Naynay]

Haven't updated for awhile. Took a break from 'cancer talk' over the holidays. Hope everyone here had a good one.
Brad successfully completed radiation therapy to the primary tumor in his leg on Dec 16th. It was a long 5 weeks, but he got through it with minimal side effects. Mostly just a lot of fatigue. One of the doctors remarked that a 10 minute session of radiation is like 10 hours in the sun, so it was understandable that he was feeling worn down. A 6 week break for recovery follows, which he's almost done with now. (I think a break from constant appointments and visits to the cancer clinic was a nice way to spend the holidays.)
Back at it now though - Brad's surgery is on the books for the first week of February. He is looking forward to getting the primary removed and resuming Keytruda afterwards to address the small nodules that still exist in his lungs. (A break was required in order to go through radiation.)
Here's hoping all goes smoothly. Will update after ressection has been completed and Brad is recovering.

[Olga]

Thank you for the update. Re. tumor donation perhaps you should not bother because after this every extensive radiation treatment its composition might be not suited for the molecular studies. Hoping for the good surgery outcome for Brad.

[Naynay]

Another update on Brad's journey. His surgery to remove the primary tumor from his lower leg went very well. He’s recovering at an exceptionally speedy rate. After only a week and a half, he’s almost off crutches and has been riding a stationary bike to keep things moving! We’re all proud of his strength, resilience, and positive attitude through this phase. Pathology of the tumor revealed margins were all healthy tissue, which means the surgeon successfully got everything – no cancer cells left behind! It also detailed the tumor (approx. size = 7 x 4cm) was comprised of 80% dead tissue. Obviously, radiation and immunotherapy did their job!
Brad had a CT scan of chest, abdomen and pelvis done last week. The report shows the lung nodules are still there, but have not grown or shrunk in size since the last CT from 3 months ago. Nothing found in the abdomen or pelvis.
He's hit a fork in the road regarding restarting immunotherapy. From past conversations, he assumed if anything was still present in the lungs, immunotherapy would restart after surgery recovery. However, his oncologist stated they’ve never had a patient who did not encounter side effects eventually. Some of these must be medicated permanently. Since Brad’s lungs have remained the same, and we're not entirely sure what the nodules are, they will hold off on restarting treatment. Another CT is being booked for mid-April and if no further growth, stay the course. If there is growth, he will restart Keytruda.
The oncologist described this as a ‘high five moment’ and we feel the same. It’s been nice to receive positive news.

Earlier in this thread, we had been asking about tumor donation. After surgery, Brad was approached about donating his tumor to a bone and soft tissue bank. Brad was happy to do so. The bank is used by surgeons, pathologists, and cancer researchers as means to further understand soft tissue tumors. It's specific to the area Brad lives in, so it's nice knowing he is supporting a local research team. Just thought I'd mention this in case anyone else is wondering about tumor donation. Feel free to PM me if you want to know more about this particular bank.

[Olga]

It is an excellent news. It is an interesting option to wait to see if the immune system works by itself now, without Keytruda. Also tell Brad to be careful and not to overwork so there is no excessive inflammation from the surgery area being disturbed constantly so it does not overload his immune system. The exercise is good but it needs to heal first. Good luck and keep us posted.

[D.ap]

Hello Shayna and Brad,

The news is excellent to hear!
I agree with Olga in keeping the exercise under control to keep the inflammatory situation from causing immune system disruption and havoc . Immunosuppressive situation . Drink plenty of water ( flush anesthesia and help to reduce inflammation) and eat healthy to bolster the immune system !


It truly sounds like a high 5 situation !😊

Love ,

[Naynay]

Hi everyone,
It's been a few months since my last post. A bit of a rollercoaster these last few weeks, but in a good way.
Brad's been doing well. Back to full time work and feeling good about it. He cannot wait to start the mountain biking season.
Like mentioned in my last post, he had a follow up CT performed on his lungs to see how things we progressing, post-surgery. The radiologist had not finalized the report by the time Brad went for his appt to discuss, but it was mentioned to him that when comparing the actual scans, it appeared things had resolved even further. Good news within itself.
About two weeks after that, Brad heard from his oncologist. The report had been finalized and both the oncologist and radiologist are now of the mindset that the nodules in the lungs were never actually metastases. Since they were always too small to biopsy, it was always speculation that they might be ASPS. We're guessing the change in opinion comes from reviewing everything that's gone on in the last year, but not entirely sure. We're hoping once we have the CT report in front of us, the reasoning will be more clear. As of right now, Brad is being considered No Evidence of Disease. A big moment for him and all the people that care about him.
He will have a set of full body scans at the end of July; they will be used as a baseline going forward. After that, yearly scans to keep on top of things.
A year inbetween scans seems a little long to me, but I understand the balance between catching something vs. exposure to radiation from the scans themselves. There will be another appointment/opportunity down the line to discuss this further with the oncologist.
Hopefully end of July brings equally good news and life can resume with some semblance of normalcy.

[Olga]

Hi,
it sounds really good. Having said that, there is no way to tell by the stable scans that lung nodules are not ASPS. You will never know that for sure unless:
1. The exploratory biopsy (to take one or two nodules) result are obtained - not advisable, can cause seeding into the chest wall, causes scarring in the pleura, and will not change anything from the treatment plan point of view.
2. They start to grow on the future scans. That would confirm they are mets. I hope it never happens.
Other than that, there are no non-invasive scans that would be 100% accurate in estimate what these are.
I would not do anything at this point. Once a year scans look way to long though. He is not even 2 years out of the initial Dx. CT scan once in 6 months for the first two years and moving to the schedule of the alternating once in 6 months CT scan/X-Ray after two years - it will reduce the exposure but still assure if they start to grow, it will be caught early.
We had the case someone lost his life when scans were not done in time. Potentially resectable lung met grew to large close to the heart. We also have the cases with stable undetermined nodules in the same state for years, ongoing. ASPS is a weird sarcoma.
Other than that, it all sounds good and you guys have a wonderful summer. Was Brad vaccinated already?

[Ivan]

The report shows the lung nodules are still there, but have not grown or shrunk in size since the last CT from 3 months ago.

Any ASPS metastases which are slowly growing will be "stable" over a 3 months time period. Over a 1 year time period is more interesting.

You should request the radiologist compare the nodules on the next scan not to previous one, but to the one from a few scans before.

[ntran727]

Such great news Shayna and brad! Hopefully the scans this month will show stability. Since they are not sure if the lung nodules are actually mets or not (as I can understand), I agree with you that repeating the scans in a year sounds a bit too far, especially after he was diagnosed only last year and is not off treatment. I would think at least 6 months scans is more reasonable and you should request that if you feel the same. If it's still stable after another year, then maybe move it to every year scans at that point.

[Naynay]

Thanks for all the responses, everyone. We appreciate the kind words, as well as your input on the scan schedule. It gives us added confidence when we head into the oncologist appt later this week to discuss the path forward. Everything will depend on the CT scans Brad went for today. He had head, chest, and pelvis done. I will be sure to post an update once we know more.

I wanted to mention that we were lucky enough to have another Dr in Canada review Brad's case right before he went in for surgery in Feb 2021. This particular Dr currently treats a few patients with ASPS. At that time, he was 100% in agreeance with the path Brad's current oncologist put forth. This definitely gave us some added relief. We plan to reach out again after the report for this CT is done and Brad's doctor gives insight into what's next in his journey.

@Ivan, I wanted to address your last reply. It got me curious:

The report shows the lung nodules are still there, but have not grown or shrunk in size since the last CT from 3 months ago.

Any ASPS metastases which are slowly growing will be "stable" over a 3 months time period. Over a 1 year time period is more interesting.

You should request the radiologist compare the nodules on the next scan not to previous one, but to the one from a few scans before.

I reviewed Brad's last few CT reports and it appears the radiologist has been comparing and evaluating stability based on all scans, not just the one done previous. This is reassuring. Thank you for bringing this up though.

I hope everyone has been having a good summer and keeping well.
-Shayna

[Ivan]

Good news. I hope your scans will display further stability.