Shayna, I really hope that Brad is reading the posts here first hands as he would be better off being in the loop completely, from so many aspects of this disease.
Re. the effect that the first rounds of immunotherapy might have on the size - it is very common for the tumor to appeal bigger on the first scan if the immune system attacks the tumor, due to inflammation. Are any scans going to be done any time soon?
Brad Dx June 2020
Re: Brad Dx June 2020
Hi Debbie,
Thanks so much for your well wishes. It is very appreciated. Even small notes like that really helps us feel less 'alone' in this.
Hi Olga,
Yes, Brad is reviewing the posts here. Yesterday he mentioned he will register for an account soon as well.
We were aware that the tumor could present as bigger in the first scan. Brad has an appointment with the oncologist on the 13th, and then his second round of treatment on the 17th. In one of the prior appointments, the oncologist stated they would probably do two rounds of immunotherapy before taking another scan. Maybe it has something to do with his PET/ brain MRI being taken so close to the first treatment. I've been reading Ivan's post on scan schedules, but since we're just getting into this, I'm not sure if this much time between is too relaxed. We plan to ask about further scan scheduling during the appointment on the 13th.
Thanks,
Shayna
Thanks so much for your well wishes. It is very appreciated. Even small notes like that really helps us feel less 'alone' in this.
Hi Olga,
Yes, Brad is reviewing the posts here. Yesterday he mentioned he will register for an account soon as well.
We were aware that the tumor could present as bigger in the first scan. Brad has an appointment with the oncologist on the 13th, and then his second round of treatment on the 17th. In one of the prior appointments, the oncologist stated they would probably do two rounds of immunotherapy before taking another scan. Maybe it has something to do with his PET/ brain MRI being taken so close to the first treatment. I've been reading Ivan's post on scan schedules, but since we're just getting into this, I'm not sure if this much time between is too relaxed. We plan to ask about further scan scheduling during the appointment on the 13th.
Thanks,
Shayna
Re: Brad Dx June 2020
Brad had his first appointment with the radiologist on Fri last week. During the appointment, he was told there are no immediate plans to start radiation. The purpose of the appointment was to talk about the potential paths that could be taken. If he does receive radiation down line, it will most likely be done as a pre-operative measure. 5 days a week (M-F), approx 20 minutes at a time, for 5 weeks. No surprises there, this seems pretty par for the course.
Brad will remain on immunotherapy for a few cycles and then they will see what kind of activity happens with the primary tumor and his lungs. I believe they will take a scan between the 2nd and 3rd treatment, or between the 3rd and 4th. They will hold off with radiation until then so they can accurately see any progress. This is also why they aren't immediately removing the primary either. It's the best gauge in knowing if there is a response. Brad is still firm that he wants the primary removed, but I guess we will have to wait until his next scans to really discuss the surgery route again.
Personally, I worry about this. While I understand they're trying to see what therapy is actually working, and only exposing Brad to more radiation if necessary, I have fears there's a small window of time to address (what the doctor called) the small amount of cancer in his body. If he does multiple rounds of immunotherapy and has no response, aren't we that much behind in treatment?
I'll mention a little bit of good news - in the same appointment, we discussed Brad's brain MRI results. Completely clear, no abnormalities. So that, combined with the PET scan, confirms that the primary and (potentially) the lungs are the only two sites in his body with ASPS.
Headed to the cancer centre again today for his pre-treatment lab work and oncologist appointment since the next round of pembro is on the 17th. Doubtful there will be much new information, but I think it will be a good time to discuss the planned scan schedule, at least.
Brad will remain on immunotherapy for a few cycles and then they will see what kind of activity happens with the primary tumor and his lungs. I believe they will take a scan between the 2nd and 3rd treatment, or between the 3rd and 4th. They will hold off with radiation until then so they can accurately see any progress. This is also why they aren't immediately removing the primary either. It's the best gauge in knowing if there is a response. Brad is still firm that he wants the primary removed, but I guess we will have to wait until his next scans to really discuss the surgery route again.
Personally, I worry about this. While I understand they're trying to see what therapy is actually working, and only exposing Brad to more radiation if necessary, I have fears there's a small window of time to address (what the doctor called) the small amount of cancer in his body. If he does multiple rounds of immunotherapy and has no response, aren't we that much behind in treatment?
I'll mention a little bit of good news - in the same appointment, we discussed Brad's brain MRI results. Completely clear, no abnormalities. So that, combined with the PET scan, confirms that the primary and (potentially) the lungs are the only two sites in his body with ASPS.
Headed to the cancer centre again today for his pre-treatment lab work and oncologist appointment since the next round of pembro is on the 17th. Doubtful there will be much new information, but I think it will be a good time to discuss the planned scan schedule, at least.
Re: Brad Dx June 2020
Congratulations on the clean brain scan.
About the radiation.
5 days a week (M-F), approx 20 minutes at a time, for 5 weeks - is a schedule for the conventional radiation treatment (not the radiosurgery like SBRT or IMRT). ASPS is very resistant to conventional irradiation and in general it is not recommended for ASPS, there is usually no benefit but always a damage.
SBRT or IMRT on the other hand, could be incorporated into immunotherapy treatment to improve the recognition of the tumor by the immune system, and was used by drs before if there is no documented response. Also to note, that the chance for the detectable measurable response to immunotherapy is not more at the primary tumor site, versus lung mets. There is no difference and it can happen anywhere. The response to immunotherapy at the primary tumor site often looks like change in density not the size, at least in the beginning.
Blood work can be done at any local lab. Just pick the one that is quiet and close and ask them to fax a requisition. He can see the results online, we always review them ourselves before the oncologists get to see them.
About the radiation.
5 days a week (M-F), approx 20 minutes at a time, for 5 weeks - is a schedule for the conventional radiation treatment (not the radiosurgery like SBRT or IMRT). ASPS is very resistant to conventional irradiation and in general it is not recommended for ASPS, there is usually no benefit but always a damage.
SBRT or IMRT on the other hand, could be incorporated into immunotherapy treatment to improve the recognition of the tumor by the immune system, and was used by drs before if there is no documented response. Also to note, that the chance for the detectable measurable response to immunotherapy is not more at the primary tumor site, versus lung mets. There is no difference and it can happen anywhere. The response to immunotherapy at the primary tumor site often looks like change in density not the size, at least in the beginning.
Blood work can be done at any local lab. Just pick the one that is quiet and close and ask them to fax a requisition. He can see the results online, we always review them ourselves before the oncologists get to see them.
Olga
Re: Brad Dx June 2020
Hello Shayna and Brad
I echo Olga’s joy on clear brain scan.😊
But if I might without alarming you , never be shy to have a follow up scan if
headache and or anything of not of the ordinary happens neurological happens , that maybe isn’t explained from here on out . Beyond the next scheduled brain scan.
What is the plan with scans , when you are able to share .
I truly understand it’s ALL new to you .
Love ,
I echo Olga’s joy on clear brain scan.😊
But if I might without alarming you , never be shy to have a follow up scan if
headache and or anything of not of the ordinary happens neurological happens , that maybe isn’t explained from here on out . Beyond the next scheduled brain scan.
What is the plan with scans , when you are able to share .
I truly understand it’s ALL new to you .
Love ,
Debbie
Re: Brad Dx June 2020
Hi Olga,
Thanks for the well wishes and information re: radiation. I'm not sure why they would suggest a type of radiation that's not typically effective... Especially since the medical team has seemed cautious of going the radiation route to begin with. We'll have to ask the oncologist about SBRT/IMRT at Brad's pre-treatment appointment next week. Side note: The second round of immunotherapy was on July 17th and went really well. Same as before, no immediate or latent side effects.
Hi Debbie,
As always, thanks for the well wishes and notes about follow up scans. This has been weighing heavily on my mind. We heard from the booking office today and it sounds like Brad will have the following scans performed between his 3rd and 4th immunotherapy treatments (approx mid-Aug):
- CT scan - Have to confirm but I assume this is for all areas of the body. At the VERY least, primary and lungs.
- Ultrasound - For primary only since ultrasounding the lungs is ineffective.
The booking office can never seem to speak to why these are the scans being booked or what areas they are for, so we'll have to confirm with the oncologist. For some reason, I expected to see a PET scan over a CT, but after reviewing Ivan's post about scan scheduling, it seems like this might be par for the course.
At any rate, we're off to the lake this weekend to enjoy the heat wave and have some fun before an August filled with tests and treatment.
Cheers all,
Shayna
Thanks for the well wishes and information re: radiation. I'm not sure why they would suggest a type of radiation that's not typically effective... Especially since the medical team has seemed cautious of going the radiation route to begin with. We'll have to ask the oncologist about SBRT/IMRT at Brad's pre-treatment appointment next week. Side note: The second round of immunotherapy was on July 17th and went really well. Same as before, no immediate or latent side effects.
Hi Debbie,
As always, thanks for the well wishes and notes about follow up scans. This has been weighing heavily on my mind. We heard from the booking office today and it sounds like Brad will have the following scans performed between his 3rd and 4th immunotherapy treatments (approx mid-Aug):
- CT scan - Have to confirm but I assume this is for all areas of the body. At the VERY least, primary and lungs.
- Ultrasound - For primary only since ultrasounding the lungs is ineffective.
The booking office can never seem to speak to why these are the scans being booked or what areas they are for, so we'll have to confirm with the oncologist. For some reason, I expected to see a PET scan over a CT, but after reviewing Ivan's post about scan scheduling, it seems like this might be par for the course.
At any rate, we're off to the lake this weekend to enjoy the heat wave and have some fun before an August filled with tests and treatment.
Cheers all,
Shayna
Re: Brad Dx June 2020
Hi everyone,
Last week, Brad had an ultrasound of the primary tumor in his leg and a CT of his lungs to see what kind of progress he's having with the Keytruda immunotherapy. A few days later, he went in to have his pre-treatment blood work and regular meeting with his oncologist. Unfortunately, the test results aren't back yet, and his regular oncologist was out-of-office so he met with a stand-in oncologist. Because of both these factors, not much of an update, but Brad plans to set up an appt with his regular oncologist once she returns to discuss the test results. I'll post an update once we hear back.
In the mean time, there's a topic that keeps coming up in these appointments that I'm just not understanding. Brad's oncologist, surgeon and the stand-in oncologist have all stated that removal of the primary tumor in his leg will make no difference in the direction of his disease, especially if it has already metastasized. From what I've read online and in this forum, I thought resection was always a given and usually actioned ASAP. In Brad's case, I know they are using the primary to gauge the effects of the immunotherapy, since the nodules in his lungs are much too small to "track" and not 100% confirmed metastasis right now. I'm very confused, and a little worried that we're losing time/making a mistake by not doing surgery right away. Any thoughts on this? Was anyone else met with the same sort of situation that could explain this direction more clearly?
Thanks.
Shayna
Last week, Brad had an ultrasound of the primary tumor in his leg and a CT of his lungs to see what kind of progress he's having with the Keytruda immunotherapy. A few days later, he went in to have his pre-treatment blood work and regular meeting with his oncologist. Unfortunately, the test results aren't back yet, and his regular oncologist was out-of-office so he met with a stand-in oncologist. Because of both these factors, not much of an update, but Brad plans to set up an appt with his regular oncologist once she returns to discuss the test results. I'll post an update once we hear back.
In the mean time, there's a topic that keeps coming up in these appointments that I'm just not understanding. Brad's oncologist, surgeon and the stand-in oncologist have all stated that removal of the primary tumor in his leg will make no difference in the direction of his disease, especially if it has already metastasized. From what I've read online and in this forum, I thought resection was always a given and usually actioned ASAP. In Brad's case, I know they are using the primary to gauge the effects of the immunotherapy, since the nodules in his lungs are much too small to "track" and not 100% confirmed metastasis right now. I'm very confused, and a little worried that we're losing time/making a mistake by not doing surgery right away. Any thoughts on this? Was anyone else met with the same sort of situation that could explain this direction more clearly?
Thanks.
Shayna
Re: Brad Dx June 2020
Hi Shayna,
thank you for an update.
To answer your questions and to comment on the situation:
1. There is often no need to meet with the oncologist in person just to discuss the scan results. The Covid cases are on the rise in BC. Phone conference work pretty good, but you have to prepare to the meeting, and you can request a follow up call if you did not get to meet with his regular oncologist. Copies of the scans reports need to be requested during the meeting in person or on the phone, to be sent to your address. As of now, I am not sure what was the scan results? what scan was done?
2. Re. primary removal. There are the questions that need to be answered to clarify their position:
- is the current size/location of the primary a concern for the surgery to probably affect his leg functionality/cause the loss of the quality of life? Are they hoping to reduce the size to make it smaller? You can ask for the IMRT radiation to the primary later if there is no response on the Keytruda alone.
- what type of scan is done for the treatment response estimation on the primary? for example PET scan SUV value could verify if there is a response even if the size stays the same. Or the density can look uneven/breaking down on the other scans with the contrast.
- there are the general articles that overall tumor burden is inversely connected to response to ICI (immune checkpoint inhibitors) drugs. We need to find those. You can contact Dr.Wilky to ask for her expert opinion if she felt that response was better within the ppl with the primary removed or lower tumor burden https://pubmed.ncbi.nlm.nih.gov/31078463/
- there are articles ASPS specific that say ASPS patients always benefit from the aggressive surgical resection of all tumor masses, primary included. It was before of the ICI drugs though.
thank you for an update.
To answer your questions and to comment on the situation:
1. There is often no need to meet with the oncologist in person just to discuss the scan results. The Covid cases are on the rise in BC. Phone conference work pretty good, but you have to prepare to the meeting, and you can request a follow up call if you did not get to meet with his regular oncologist. Copies of the scans reports need to be requested during the meeting in person or on the phone, to be sent to your address. As of now, I am not sure what was the scan results? what scan was done?
2. Re. primary removal. There are the questions that need to be answered to clarify their position:
- is the current size/location of the primary a concern for the surgery to probably affect his leg functionality/cause the loss of the quality of life? Are they hoping to reduce the size to make it smaller? You can ask for the IMRT radiation to the primary later if there is no response on the Keytruda alone.
- what type of scan is done for the treatment response estimation on the primary? for example PET scan SUV value could verify if there is a response even if the size stays the same. Or the density can look uneven/breaking down on the other scans with the contrast.
- there are the general articles that overall tumor burden is inversely connected to response to ICI (immune checkpoint inhibitors) drugs. We need to find those. You can contact Dr.Wilky to ask for her expert opinion if she felt that response was better within the ppl with the primary removed or lower tumor burden https://pubmed.ncbi.nlm.nih.gov/31078463/
- there are articles ASPS specific that say ASPS patients always benefit from the aggressive surgical resection of all tumor masses, primary included. It was before of the ICI drugs though.
Olga
Re: Brad Dx June 2020
Hi Shayna and Brad,
Welcome to the forum and sad to share the in Brad’s recent diagnosis. From what I have read so far, you both seem to be very proactive which is important in fighting ASPS. I hope to see good results on Brad’s upcoming scans. Has Brad had any symptoms like pain or swelling in the primary tumor since starting on Pembro? Any reduction in size he could feel? Sometimes patients may feel this right away after a few infusions but some patients like myself don’t have any response for the first 3 months. Either way, he has a good chance with immunotherapy working for him so be sure to work on his terrain with a good diet and exercise. The removal of the tumor should be considered based on the things Olga mentioned and I agree that it is not as clear to just remove it simply now that we have ICIs. There are some patients that undergo treatment with ICIs and their primary tumors shrunk to almost nothing, one had a primary tumor in her calf as well. Surgery will also be a burden on the immune system and will typically cause rebound growth of the other Mets while the body heals. I will look for your next update.
-Nhi
Welcome to the forum and sad to share the in Brad’s recent diagnosis. From what I have read so far, you both seem to be very proactive which is important in fighting ASPS. I hope to see good results on Brad’s upcoming scans. Has Brad had any symptoms like pain or swelling in the primary tumor since starting on Pembro? Any reduction in size he could feel? Sometimes patients may feel this right away after a few infusions but some patients like myself don’t have any response for the first 3 months. Either way, he has a good chance with immunotherapy working for him so be sure to work on his terrain with a good diet and exercise. The removal of the tumor should be considered based on the things Olga mentioned and I agree that it is not as clear to just remove it simply now that we have ICIs. There are some patients that undergo treatment with ICIs and their primary tumors shrunk to almost nothing, one had a primary tumor in her calf as well. Surgery will also be a burden on the immune system and will typically cause rebound growth of the other Mets while the body heals. I will look for your next update.
-Nhi
Re: Brad Dx June 2020
Hi Nhi,
Thank you for your kind words and for reaching out. We both appreciate the support this forum offers. To answer your questions, no swelling at the primary site while he's been on Pembro. Brad has actually felt like the size of the tumor has gone down to touch, but since getting the test results back, I'm not sure if that maybe have been a placebo effect of his positive thinking.
In terms of updates, we have a few on Brad's progress. The following test results came back a couple weeks ago:
Ultrasound was done on calf to determine if primary tumor has had any response.
Original measurements 7.4 x 3 x 3.7cm.
Current measurements 6.9 x 3.3 x 3.3cm.
So a little confusing, to say the least. Obviously the 3mm -> 3.3mm is a little perplexing. However, Brad's oncologist and this forum had prepared us for the fact the first scan after starting treatment doesn't always paint the clearest picture. Brad now has an MRI booked for the end of October for the primary. We're hoping to see smaller measurements and perhaps insight into whether the tumor is 'breaking down' on the inside.
CT scan was performed on the abdomen, chest and pelvis. More specifically to look at the 5 lung nodules that were identified in earlier scans. It was actually the lungs that have the oncologist thinking Brad is having a response to the immunotherapy:
The 3 smallest nodules are resolved
Second largest nodule is now is less than .5mm (down from approx 8.8mm)
Largest nodule is now 6mm (down from 12mm!)
No new nodules identified
While the best news would have been 'no change' in the lung area, since that would mean the nodules were not associated with ASPS, it is a relief to see such a drastic change in that area.
- Most recent lab work reflected Brad's potassium is a little high, but nothing severe enough to delay or change his treatment schedule.
Brad is going to continue immunotherapy, in fact, he just went for cycle 5 today. After cycle 6, he will begin speaking with the radiologist and surgeon again. The team is thinking to do some radiation for a few weeks, then remove the primary tumor.
I'm not sure if anyone has a strong opinion on this, but when would be a good time to request more scans? The MRI is already booked, but should we be pushing to check the lungs again in another few cycles? Between CTs and PETs, I'm wondering how often both of these should typically be happening?
Thank you for your kind words and for reaching out. We both appreciate the support this forum offers. To answer your questions, no swelling at the primary site while he's been on Pembro. Brad has actually felt like the size of the tumor has gone down to touch, but since getting the test results back, I'm not sure if that maybe have been a placebo effect of his positive thinking.
In terms of updates, we have a few on Brad's progress. The following test results came back a couple weeks ago:
Ultrasound was done on calf to determine if primary tumor has had any response.
Original measurements 7.4 x 3 x 3.7cm.
Current measurements 6.9 x 3.3 x 3.3cm.
So a little confusing, to say the least. Obviously the 3mm -> 3.3mm is a little perplexing. However, Brad's oncologist and this forum had prepared us for the fact the first scan after starting treatment doesn't always paint the clearest picture. Brad now has an MRI booked for the end of October for the primary. We're hoping to see smaller measurements and perhaps insight into whether the tumor is 'breaking down' on the inside.
CT scan was performed on the abdomen, chest and pelvis. More specifically to look at the 5 lung nodules that were identified in earlier scans. It was actually the lungs that have the oncologist thinking Brad is having a response to the immunotherapy:
The 3 smallest nodules are resolved
Second largest nodule is now is less than .5mm (down from approx 8.8mm)
Largest nodule is now 6mm (down from 12mm!)
No new nodules identified
While the best news would have been 'no change' in the lung area, since that would mean the nodules were not associated with ASPS, it is a relief to see such a drastic change in that area.
- Most recent lab work reflected Brad's potassium is a little high, but nothing severe enough to delay or change his treatment schedule.
Brad is going to continue immunotherapy, in fact, he just went for cycle 5 today. After cycle 6, he will begin speaking with the radiologist and surgeon again. The team is thinking to do some radiation for a few weeks, then remove the primary tumor.
I'm not sure if anyone has a strong opinion on this, but when would be a good time to request more scans? The MRI is already booked, but should we be pushing to check the lungs again in another few cycles? Between CTs and PETs, I'm wondering how often both of these should typically be happening?
Re: Brad Dx June 2020
I think that there is a clear proof that Brad is definitely having a response to K. Excellent beginning.
Re. Ultrasound result. The primary is a soft tissue tumor, that can not be correctly described in 3 dimensional measurements as its shape is irregular, not the box. Any change in muscle contraction will cause the change of the shape. And overall there is a volumetric change down, not up for sure.
Lung mets response is excellent and a good prognostic factor.
I do not understand the plan for the long course irradiation, conventional way, there is going to be a skin damage/burn which is going to cause a damage to the immune system function - immune system is very connected to a health of the skin. Usually the irradiation combined with the immune checkpoint inhibitors is IMRT or SBRT, done in few fractions, higher dose, and only if the skin damage can be avoided. When Ivan was going trough the planning for the SBRT, the question of the skin damage was discussed and assurance was in place to avoid it. Dr.Mass is unfortunately not at the radiation dep at the BCCA, but they can consult Dr.Razak from Toronto - his recommendation is to combine the ICI with the SBRT not the long conventional type.
The goal is not to damage the immune system response in any way now, just let it go. I would even postpone the radiation and see how the immune system manages itself, till the next primary scan. When we added the irradiation to Keytruda, the goal was to help the immune system to recognize the tumor, but in Brad case there is already a proof that it has started to eat the tumors. It is more important now not to damage the immune system response for now. I.e. you have to clearly define the goals of the proposed treatments based on the scan results as they became available and not just follow the initial plan disregarding the results.
Re. next scans. CT should be be done every 3-4 months now, but it is never a problem to book a CT. The problem is usually with the MRI and since it is already booked, this is fine for now - when is the date for the MRI?
High potassium could be a sign of the developing adrenal insufficiency, as Ivan has now. Ask for the morning cortisol and ACTH added to the next blood work.
Re. Ultrasound result. The primary is a soft tissue tumor, that can not be correctly described in 3 dimensional measurements as its shape is irregular, not the box. Any change in muscle contraction will cause the change of the shape. And overall there is a volumetric change down, not up for sure.
Lung mets response is excellent and a good prognostic factor.
I do not understand the plan for the long course irradiation, conventional way, there is going to be a skin damage/burn which is going to cause a damage to the immune system function - immune system is very connected to a health of the skin. Usually the irradiation combined with the immune checkpoint inhibitors is IMRT or SBRT, done in few fractions, higher dose, and only if the skin damage can be avoided. When Ivan was going trough the planning for the SBRT, the question of the skin damage was discussed and assurance was in place to avoid it. Dr.Mass is unfortunately not at the radiation dep at the BCCA, but they can consult Dr.Razak from Toronto - his recommendation is to combine the ICI with the SBRT not the long conventional type.
The goal is not to damage the immune system response in any way now, just let it go. I would even postpone the radiation and see how the immune system manages itself, till the next primary scan. When we added the irradiation to Keytruda, the goal was to help the immune system to recognize the tumor, but in Brad case there is already a proof that it has started to eat the tumors. It is more important now not to damage the immune system response for now. I.e. you have to clearly define the goals of the proposed treatments based on the scan results as they became available and not just follow the initial plan disregarding the results.
Re. next scans. CT should be be done every 3-4 months now, but it is never a problem to book a CT. The problem is usually with the MRI and since it is already booked, this is fine for now - when is the date for the MRI?
High potassium could be a sign of the developing adrenal insufficiency, as Ivan has now. Ask for the morning cortisol and ACTH added to the next blood work.
Olga
Re: Brad Dx June 2020
Shayna and Brad,
The news is awesome!!
I certainly agree with Olga on waiting to schedule radiation as it can be quite a damaging procedure to both the skin and immune system .
The 3 resolved tumors in the lungs were about 1cm?
And this was after about 4 doses ( 12weeks) of Keytruda ?
Continue to embrace this wonderful news.
Looking forward to scan reports in October !
Love ,
The news is awesome!!
I certainly agree with Olga on waiting to schedule radiation as it can be quite a damaging procedure to both the skin and immune system .
The 3 resolved tumors in the lungs were about 1cm?
And this was after about 4 doses ( 12weeks) of Keytruda ?
Continue to embrace this wonderful news.
Looking forward to scan reports in October !
Love ,
Debbie
Re: Brad Dx June 2020
Hi Debbie/Olga,
Thanks for the well wishes. To answer the questions from your last posts:
- The 3 resolved nodules were much smaller in size than the largest. They ranged from from 3.5-6mm.
- Scans were done just prior to his 4th cycle of Keytruda, meaning he had only completed 3 cycles at that time.
- The MRI is booked for last week of Oct. I believe the 29th or 30th.
We've taken notes on the details you've provided re: radiation and plan to do some research before meeting with the radiologist or oncologist again. We certainly don't want to interrupt any positive response Brad is having on the immunotherapy, it actually scares me a bit to think of that. In the past, I've tried reading up on immunotherapy + radiation in the past, I found actually encouraged it. However, I understand ASPS is very rare and might not behave the same as the cancers referenced in these papers. Would anyone happen to have some articles or med journals that outline the possible issues with the combination?
Thanks so much. Will update again when the path forward is more clear!
Shayna
Thanks for the well wishes. To answer the questions from your last posts:
- The 3 resolved nodules were much smaller in size than the largest. They ranged from from 3.5-6mm.
- Scans were done just prior to his 4th cycle of Keytruda, meaning he had only completed 3 cycles at that time.
- The MRI is booked for last week of Oct. I believe the 29th or 30th.
We've taken notes on the details you've provided re: radiation and plan to do some research before meeting with the radiologist or oncologist again. We certainly don't want to interrupt any positive response Brad is having on the immunotherapy, it actually scares me a bit to think of that. In the past, I've tried reading up on immunotherapy + radiation in the past, I found actually encouraged it. However, I understand ASPS is very rare and might not behave the same as the cancers referenced in these papers. Would anyone happen to have some articles or med journals that outline the possible issues with the combination?
Thanks so much. Will update again when the path forward is more clear!
Shayna
Re: Brad Dx June 2020
Shayna
Olga had written this prior
Very important to note -
“SBRT or IMRT on the other hand, could be incorporated into immunotherapy treatment to improve the recognition of the tumor by the immune system, and was used by drs before if there is no documented response. Also to note, that the chance for the detectable measurable response to immunotherapy is not more at the primary tumor site, versus lung mets. There is no difference and it can happen anywhere. The response to immunotherapy at the primary tumor site often looks like change in density not the size, at least in the beginning.”
With the MRI results in October ,
AND knowing what kind of machine may be used in the primaries treatment, a better cost / benefit decision could be made .
As is known , ASPS is highly radio resistant and would require quite a lot of radiation to be administered to Brad’s 7cm Ish primary .
Olga had written this prior
Very important to note -
“SBRT or IMRT on the other hand, could be incorporated into immunotherapy treatment to improve the recognition of the tumor by the immune system, and was used by drs before if there is no documented response. Also to note, that the chance for the detectable measurable response to immunotherapy is not more at the primary tumor site, versus lung mets. There is no difference and it can happen anywhere. The response to immunotherapy at the primary tumor site often looks like change in density not the size, at least in the beginning.”
With the MRI results in October ,
AND knowing what kind of machine may be used in the primaries treatment, a better cost / benefit decision could be made .
As is known , ASPS is highly radio resistant and would require quite a lot of radiation to be administered to Brad’s 7cm Ish primary .
Debbie
Re: Brad Dx June 2020
Just to clarify. You need to understand how Keytruda and all ICI work. They block some specific signal that tumors use to escape the immune attack - there are many possible signals they can use,in different types of tumors and different hosts (patients). If this happened to be the right signal this particular tumor used, and after it blocked, the immune system is able to recognize the tumor and starts to eat it. This is basically the goal of the immunotherapy treatment - initiate the immune system attack and hope it will create the tumor specific killer cells with memory so it can go on after Keytruda is finished. Right now inside of the tumors his immune cells destroy the tumor and work on creation of the memory cells. Basically what you need to do is to thank them for every day they are there, trying not to disturb them and let them do their thing. If the radiation is started now, it is going to kill the immune cells inside of that primary tumor along with the tumor. If the tumor is killed, it is not the big deal as there are other immune cells in his lungs eating the lung mets. But if there is a significant inflammation, necrosis at the primary site, there might be to much of the pro-inflammatory signals and it might affect gentle process that is happening in his body now. The immune system is very sensitive to skin damage, to necrotic tissue inflammation etc. It does not mean the process of the recognition in the lungs will be abolished, er do not know that. But from the general understanding, to keep the immune system eating the tumor, you want it healthy. He needs to reduce stress - physical or psychological, eat healthy, sleep well, have as much fun as possible including some physical activities outdoor to get the muscle working and to have the skin exposed to a sun without burning it. Feed the microbiome - insoluble fiber containing food, fermented veggies.
The combination of the ICI drugs+radiation therapy is used to point to the tumors to immune cells that will come after irradiation. SBRT is used for that (only few treatments). If the cells are already there, let them do their thing and keep this option for later if needed, if the immune attack stops.
It looks like the radiation therapy doctors do not take into consideration already existing immune response. Discuss that with Dr.Simmons.
The combination of the ICI drugs+radiation therapy is used to point to the tumors to immune cells that will come after irradiation. SBRT is used for that (only few treatments). If the cells are already there, let them do their thing and keep this option for later if needed, if the immune attack stops.
It looks like the radiation therapy doctors do not take into consideration already existing immune response. Discuss that with Dr.Simmons.
Olga