Hi Phura,
That is good to know what Dr. Drewes suggested because my case is very similar to your son's. I don't have many nodules and they are small in size (although I do have some bigger ones up to 7mm).
When I went for a second opinion at Memorial Sloan Kettering, the oncologist there told me that I could either wait 3 months and rescan to see if there are changes and to determine the rate of growth and start systemic treatment (with TKI) then or start the TKI now. Neither my oncologist or the oncologist at MSK suggested surgery as I agree they are pretty small in number to try to remove right away with such a major surgery especially if we don't know how quickly more will pop up or how fast they will grow.
I have started on Sutent (I will start a thread today in the systemic treatment section) and will get a repeat CT chest 4-6 weeks after starting the medication.
I cannot make any specific recommendations, but we know already that chemo doesn't work well for ASPS and is much more severe in terms of side effects than TKIs so I would not go with the chemo route. I would pick either option 2 or 3 or whatever other people recommend. Again, I am new to this disease myself. Best of luck in making your decision!
P from Thailand - Dx 2016 at 13 yrs old
Re: 13 years old, Thiland dx March 2016.
I suggest to follow Dr.Drewes recommendations for now - to control & wait & rescan in 3 months. If you start any treatment now, you will not know the speed of growth of the mets so it would be hard to say if any treatment is working or they are just extremely slow growing/stable by themselves.
Ask the radiologist to use the strict reporting criteria of the growth - its real values - and compare not only to the last scan but also to a scan before. Sometimes they use the RECIST criteria (a reporting standart for the radiology) and will only report a progressive disease if
" a 5-mm absolute increase of the sum of the longest diameters of the target lesions in addition to a 20% increase in the sum of the target lesions
Read More: http://www.ajronline.org/doi/full/10.2214/AJR.09.4110"
For ASPS it would mean that the stable disease is reported when in fact there is a very slow constant growth. This system should not be used for ASPS but it is still used often if we do not pay an attention and not to warn the oncologist/radiologist that its natural speed of growth is lower.
Re. traditional chemotherapy. In our community and in the published literature there are few pretty good cases of the long term (10+ years) success (remission) with it when used in conjunction with the surgery to remove the bigger mets. It does not work for the bigger mets or primary tumors and the goal is to destroy the micromets.
On the other hand, our members did not obtain any long term stability or remission with the Sutent, but our experience is limited and statistically insignificant. Recent publication from China provided better results than it is usually reported for the ASPS patients treated with Sutent (longer stability and overall survival) but it is hard to say if it is more active in than slightly genetically different group of patients, also we do not know how reliable their results are. The problem is the possible rebound after it stops working (faster growth if the resistance develops).
On the other hand with the treatment research progressing lately you might not need that long to survive till the real cure is found? But I am afraid it is to optimistic re. timing here.
Ask the radiologist to use the strict reporting criteria of the growth - its real values - and compare not only to the last scan but also to a scan before. Sometimes they use the RECIST criteria (a reporting standart for the radiology) and will only report a progressive disease if
" a 5-mm absolute increase of the sum of the longest diameters of the target lesions in addition to a 20% increase in the sum of the target lesions
Read More: http://www.ajronline.org/doi/full/10.2214/AJR.09.4110"
For ASPS it would mean that the stable disease is reported when in fact there is a very slow constant growth. This system should not be used for ASPS but it is still used often if we do not pay an attention and not to warn the oncologist/radiologist that its natural speed of growth is lower.
Re. traditional chemotherapy. In our community and in the published literature there are few pretty good cases of the long term (10+ years) success (remission) with it when used in conjunction with the surgery to remove the bigger mets. It does not work for the bigger mets or primary tumors and the goal is to destroy the micromets.
On the other hand, our members did not obtain any long term stability or remission with the Sutent, but our experience is limited and statistically insignificant. Recent publication from China provided better results than it is usually reported for the ASPS patients treated with Sutent (longer stability and overall survival) but it is hard to say if it is more active in than slightly genetically different group of patients, also we do not know how reliable their results are. The problem is the possible rebound after it stops working (faster growth if the resistance develops).
On the other hand with the treatment research progressing lately you might not need that long to survive till the real cure is found? But I am afraid it is to optimistic re. timing here.
Olga
Re: 13 years old, Thiland dx March 2016.
Hi everyone,
Dr.Drewes/Coswig suggested my son should receive chemo or TKI therapy, we could break of 6 weeks before operation. In progress of cancer disease is a operation after this break possible, but the lung is after chemo not so much elastic and some times they have a small postoperative problem with reexpansion of lung and closing of airlecks. After TKI is a bleeding complication a little bit higher as normal. He has recommended to send him next CT-scan.
Keytuda is not applicable for kid under 18 years old and no any clinical trial in our country.
As recommended by Onco, we have no choice that we shall go to Chemo first instead of Sutent. In their experience that Chemo is more effective than TKI in this case.
Please let me know your suggestion.
Again thank you very much.
Dr.Drewes/Coswig suggested my son should receive chemo or TKI therapy, we could break of 6 weeks before operation. In progress of cancer disease is a operation after this break possible, but the lung is after chemo not so much elastic and some times they have a small postoperative problem with reexpansion of lung and closing of airlecks. After TKI is a bleeding complication a little bit higher as normal. He has recommended to send him next CT-scan.
Keytuda is not applicable for kid under 18 years old and no any clinical trial in our country.
As recommended by Onco, we have no choice that we shall go to Chemo first instead of Sutent. In their experience that Chemo is more effective than TKI in this case.
Please let me know your suggestion.
Again thank you very much.
Re: P from Thailand - Dx 2016 at 13 yrs old
Hi Olga,Bonni,Nhi, Martin, and all..
For updating my son that he was treated by chemo ; ifosfamide, vincristine, doxorubicin in 2016 Nov to Apri 2017 (6 months) about every 3 weeks total 7 times (3days in hospital).
He has serveral scans; ct lung, brain MRI, PET, bone scan, heart echo test, blood test..
The last 2 scans sets shown that multiple tiny pulmonary nodules are not demonstrated, brain & bone are clear. And just now the current PET scan on 26 Sep 2019 said that whole body & bone, brain are clear and decrease hyper metabolic activity at his primary tumor which was resected and RT.
His weight is gain back from y 2016 at 132 lbs (60 kg), 5.5 ft (170 cm ) and now up to 176 lbs (80 kg), height 5.9 feet (180 cm) He goes gym 5-6 times a week min. 2 hrs per time and also other sport. We cut process food, no red meat, more fruit and vegetable.
As the Onco just only order PET scan and no other scan types, I would like to have your suggestion if in this period PET is enough or we shall ask for other scan? The Onco said that PET is effective scan to see whole body first and to avoid my son unnecessary to expose radiation. Pls let me know how to monitoring and what are scan types that we shall have and talk to our Onco?
Thank you so much for all your help in the journey.
Hope everyone has healthy.
For updating my son that he was treated by chemo ; ifosfamide, vincristine, doxorubicin in 2016 Nov to Apri 2017 (6 months) about every 3 weeks total 7 times (3days in hospital).
He has serveral scans; ct lung, brain MRI, PET, bone scan, heart echo test, blood test..
The last 2 scans sets shown that multiple tiny pulmonary nodules are not demonstrated, brain & bone are clear. And just now the current PET scan on 26 Sep 2019 said that whole body & bone, brain are clear and decrease hyper metabolic activity at his primary tumor which was resected and RT.
His weight is gain back from y 2016 at 132 lbs (60 kg), 5.5 ft (170 cm ) and now up to 176 lbs (80 kg), height 5.9 feet (180 cm) He goes gym 5-6 times a week min. 2 hrs per time and also other sport. We cut process food, no red meat, more fruit and vegetable.
As the Onco just only order PET scan and no other scan types, I would like to have your suggestion if in this period PET is enough or we shall ask for other scan? The Onco said that PET is effective scan to see whole body first and to avoid my son unnecessary to expose radiation. Pls let me know how to monitoring and what are scan types that we shall have and talk to our Onco?
Thank you so much for all your help in the journey.
Hope everyone has healthy.
Last edited by Phura on Fri Oct 04, 2019 7:04 pm, edited 2 times in total.
Re: P from Thailand - Dx 2016 at 13 yrs old
Phura
All looking great !
All of yours efforts of your sons management, usage of PET Scans in his care, has brought great results with further end results . Surgery , successful chemo etc .
Our son was truly helped by a wonderful team of doctors here in the USA starting 2012 and has had succcess thus forward .
He’s doing great today . :)
Thank you for all you’ve contributed as it will help all today and forward , to make good decisions.
My ( our ) love to you.
Love
All looking great !
All of yours efforts of your sons management, usage of PET Scans in his care, has brought great results with further end results . Surgery , successful chemo etc .
Our son was truly helped by a wonderful team of doctors here in the USA starting 2012 and has had succcess thus forward .
He’s doing great today . :)
Thank you for all you’ve contributed as it will help all today and forward , to make good decisions.
My ( our ) love to you.
Love
Last edited by D.ap on Sat Oct 05, 2019 3:21 am, edited 1 time in total.
Debbie
Re: P from Thailand - Dx 2016 at 13 yrs old
Thank you for the update, it was a long time since we heard from you. It looks like your son had an exceptionally good response to traditional chemotherapy, it is great. As I understand, he only had lung mets and they completely regressed on the chemotherapy treatment, correct? Was the primary resected before or after the chemotherapy? I am not sure why would the PET scan show decreased signal if there is supposedly no tumor left.
Re. PET for the follow up. Recurrences with ASPS are frequent so the long time (life long) follow up is needed. The very late recurrences were reported. First two years after the treatment lungs should be more frequently scanned, and unfortunately I would disagree with the PET scan. ASPS small mets are never show up on the PET scan. Even when people with the known small ASPS would get the clean PET scan. Sometimes people alternate - once in 6 months CT scan and once in 6 months X-Rays. Also brain MRI (no radiation here) should be done once a year as this is where the mets usually show next after the lung mets. Plus the wide field CT scan should be done sometimes to include the low abdomen as well.
Re. PET for the follow up. Recurrences with ASPS are frequent so the long time (life long) follow up is needed. The very late recurrences were reported. First two years after the treatment lungs should be more frequently scanned, and unfortunately I would disagree with the PET scan. ASPS small mets are never show up on the PET scan. Even when people with the known small ASPS would get the clean PET scan. Sometimes people alternate - once in 6 months CT scan and once in 6 months X-Rays. Also brain MRI (no radiation here) should be done once a year as this is where the mets usually show next after the lung mets. Plus the wide field CT scan should be done sometimes to include the low abdomen as well.
Olga
Re: P from Thailand - Dx 2016 at 13 yrs old
Hi Debbie,
Thank you so much ..and really great to hear your son is healthy ..
Hi Olga,
The primary 3x3x4 cm was resected and Rt by 6 months 2016 before chemo.
Before Pet scan , we done lung Ct which they were reduced in size from 0.4 cm to 0.1 cm , no new met and other scan shown clear and PET shown clear in his lung and other areas. Then the Onco just only order PET scan after 6 months and we just got a report on Sep 26,2019 which shown not detected in his lungs and other areas too. For his primary area;right fibula decrease hyper metabolic that possible due to improvement of imflammatory process.
We will meet the Onco and will discusse with him about your recommended scans in next week.
Again thank you very much for your quick feedback.
Thank you so much ..and really great to hear your son is healthy ..
Hi Olga,
The primary 3x3x4 cm was resected and Rt by 6 months 2016 before chemo.
Before Pet scan , we done lung Ct which they were reduced in size from 0.4 cm to 0.1 cm , no new met and other scan shown clear and PET shown clear in his lung and other areas. Then the Onco just only order PET scan after 6 months and we just got a report on Sep 26,2019 which shown not detected in his lungs and other areas too. For his primary area;right fibula decrease hyper metabolic that possible due to improvement of imflammatory process.
We will meet the Onco and will discusse with him about your recommended scans in next week.
Again thank you very much for your quick feedback.
Re: P from Thailand - Dx 2016 at 13 yrs old
I think PET scan is not very useful for ASPS. It grows very slowly, so it would hardly light up. In my opinion I would do everything else but PET - MRI (brain, abdomen), CT & bone. Maybe once per year if it's totally clear.Phura wrote:Hi Debbie,
Thank you so much ..and really great to hear your son is healthy ..
Hi Olga,
The primary 3x3x4 cm was resected and Rt by 6 months 2016 before chemo.
Before Pet scan , we done lung Ct which they were reduced in size from 0.4 cm to 0.1 cm , no new met and other scan shown clear and PET shown clear in his lung and other areas. Then the Onco just only order PET scan after 6 months and we just got a report on Sep 26,2019 which shown not detected in his lungs and other areas too. For his primary area;right fibula decrease hyper metabolic that possible due to improvement of imflammatory process.
We will meet the Onco and will discusse with him about your recommended scans in next week.
Again thank you very much for your quick feedback.
Re: P from Thailand - Dx 2016 at 13 yrs old
Hi all,
After PET detected increasing FDG and again done MRI that we found one 2.7 c.m. enhancing lesion at posterior to sacrococcygeal.
Other parts of body are clear.
The doctor try to done physical check by his hand but didn't find any lumping. So, do we need Biopsy to make sure it is recurrent or not for future treatment? I am very worry, how to proceed?
Is Keytuda or immune therapy available for kid or not? Are there any off label for kid?
Thank you Ivan for suggestions the scan.
After PET detected increasing FDG and again done MRI that we found one 2.7 c.m. enhancing lesion at posterior to sacrococcygeal.
Other parts of body are clear.
The doctor try to done physical check by his hand but didn't find any lumping. So, do we need Biopsy to make sure it is recurrent or not for future treatment? I am very worry, how to proceed?
Is Keytuda or immune therapy available for kid or not? Are there any off label for kid?
Thank you Ivan for suggestions the scan.
Re: P from Thailand - Dx 2016 at 13 yrs old
MRI is a very specific scan for the ASPS and if it says positive then it most probably is. If this is the only area where the active disease consult the best surgeon (or better two different ones) re. possible resection
Olga
Re: P from Thailand - Dx 2016 at 13 yrs old
Hi Oga,
After surgery, do we need RT? Shall we have any systematic treatment?
Or only surgery? And scan monitoring?.
Many thanks.
After surgery, do we need RT? Shall we have any systematic treatment?
Or only surgery? And scan monitoring?.
Many thanks.
Re: P from Thailand - Dx 2016 at 13 yrs old
It depends on the surgery details - post surgery report re margins obtained. The surgeon will provide that to you. If clean no other treatment is needed for now only scans
Olga
Re: P from Thailand - Dx 2016 at 13 yrs old
Hi Olga,
The Oncology, the surgeon, and the radiation oncology had a meeting to verify MRI scan result again, they said that this is not met and no recurrence. They have recommend to measure in the next 6 months, no need any treatment. Could you suggest how to proceed?
Again thank you so much.
The Oncology, the surgeon, and the radiation oncology had a meeting to verify MRI scan result again, they said that this is not met and no recurrence. They have recommend to measure in the next 6 months, no need any treatment. Could you suggest how to proceed?
Again thank you so much.
Re: P from Thailand - Dx 2016 at 13 yrs old
Hello Phura,
The news sounds good with your team feeling that the scan isn’t showing a tumor.
Did they by chance see the same image on an earlier scan ? PET and or bone? And or MRI?
Are you referring to the PET as the bone scan?
Also , how are the lungs looking after the chemo in 2016,2017?
The news sounds good with your team feeling that the scan isn’t showing a tumor.
Did they by chance see the same image on an earlier scan ? PET and or bone? And or MRI?
Are you referring to the PET as the bone scan?
Also , how are the lungs looking after the chemo in 2016,2017?
For updating my son that he was treated by chemo ; ifosfamide, vincristine, doxorubicin in 2016 Nov to Apri 2017 (6 months) about every 3 weeks total 7 times (3days in hospital).
Debbie
Re: P from Thailand - Dx 2016 at 13 yrs old
Ps the reason I ask is I’m wondering if the scan is showing a degree of injury after the above chemo that was administered .
So PET was compared to bone scan ?
But resolved during your sons treatment 3 plus years ago ? But maybe wasn’t seen till now ?
https://unclineberger.org/news-archives ... enescence/
So PET was compared to bone scan ?
But resolved during your sons treatment 3 plus years ago ? But maybe wasn’t seen till now ?
https://unclineberger.org/news-archives ... enescence/
Debbie