P from Thailand - Dx 2016 at 13 yrs old
Re: 13 years old, Thiland dx March 2016.
Hello, I just wanted to add that I agree with Olga and Bonni regarding the question of chemotherapy. It is very important to stay proactive with scans and gathering information like you are doing. Regarding diet and nutrition, it does not seem to matter. However, I believe my son is recovering better from his past and present surgeries since he was physically active which seemed to help him get moving quicker which surprised the physical therapist. My thoughts are with you since my son was diagnosed around the age. Hugs
Re: 13 years old, Thiland dx March 2016.
Hi
(Olga has a lot more experience than I do, but I share my opinion anyway.) I have been dealing with asps for 8 years now. I am glad to hear that you had main tumor removed. My first oncologist didnt remove my main tumor at all. Instead he gave me chemo. Chemo shrank the main tumor, but didnt do anything for my lung mets. In theory chemo can destroy micro mets, but I think the response rate is very poor in asps. I personally would not go with chemo if I would have to choose again. After I had my main tumor and lungs operated I tried interferon and had long stable period of 4 years until brain metastases appeared. Now I use keytruda and high dose radiation for brain tumors. I personally would not recommend interferon, because of side effects. I had severe psychosis after 6 moths of interferon. Keytruda has very few side effects, however severe immunologigal adverse events are possible, but rare.
If I would be in your situation I would use keytruda possibly combined with TKI. Then I would go laser surgery for lungs. Just waiting before having laser surgery is also good option, because there are risks involved in systematic medication. I agree that biopsy is bad idea. Mri for abdomen and pelvis would protect your kid from having extra radiation. When it comes to diet my only advice is: try to avoid losing weight.
I know this is scary, but I think you have very good chance to survive.
(Olga has a lot more experience than I do, but I share my opinion anyway.) I have been dealing with asps for 8 years now. I am glad to hear that you had main tumor removed. My first oncologist didnt remove my main tumor at all. Instead he gave me chemo. Chemo shrank the main tumor, but didnt do anything for my lung mets. In theory chemo can destroy micro mets, but I think the response rate is very poor in asps. I personally would not go with chemo if I would have to choose again. After I had my main tumor and lungs operated I tried interferon and had long stable period of 4 years until brain metastases appeared. Now I use keytruda and high dose radiation for brain tumors. I personally would not recommend interferon, because of side effects. I had severe psychosis after 6 moths of interferon. Keytruda has very few side effects, however severe immunologigal adverse events are possible, but rare.
If I would be in your situation I would use keytruda possibly combined with TKI. Then I would go laser surgery for lungs. Just waiting before having laser surgery is also good option, because there are risks involved in systematic medication. I agree that biopsy is bad idea. Mri for abdomen and pelvis would protect your kid from having extra radiation. When it comes to diet my only advice is: try to avoid losing weight.
I know this is scary, but I think you have very good chance to survive.
Re: 13 years old, Thiland dx March 2016.
Oh and if tumors are growing fast then chemo is more likely to be effective. So waiting for the next scan to see how fast mets are growing might be good idea.
Re: 13 years old, Thiland dx March 2016.
Hi Bonni,
Thank you very much for kindly share information.
as understand that Cediranib is in clinical trial ..but in my country we dont have this kind of trial process. For country that can only use approved drung as my understading. Could you pls suggetsions?
Hi Rojussi,
Thank you very much for suggestion. Can Keytruda use for kid? Did any approval for Kd? Do you have any link information about Keytruda for kid?
Hi MartinBube,
Thank you very much for suggetsion..
Hi Olga and all,
In my country we just have only;
1. Thermotron-RF8 , Can be apply for lug met?
2. Intensity Frequency Ultrasound, HIFU),Can be apply for lug met?
in Asia, China.
1. Cryosurgical Ablation? Can be apply for lug met?
I am contacting Coswing for LSPM but waiting the answer.
Dear everyone,
If you have any suggetsions for treatment in Thiland or Asian countries, let me know please...
Thank you very much for kindly share information.
as understand that Cediranib is in clinical trial ..but in my country we dont have this kind of trial process. For country that can only use approved drung as my understading. Could you pls suggetsions?
Hi Rojussi,
Thank you very much for suggestion. Can Keytruda use for kid? Did any approval for Kd? Do you have any link information about Keytruda for kid?
Hi MartinBube,
Thank you very much for suggetsion..
Hi Olga and all,
In my country we just have only;
1. Thermotron-RF8 , Can be apply for lug met?
2. Intensity Frequency Ultrasound, HIFU),Can be apply for lug met?
in Asia, China.
1. Cryosurgical Ablation? Can be apply for lug met?
I am contacting Coswing for LSPM but waiting the answer.
Dear everyone,
If you have any suggetsions for treatment in Thiland or Asian countries, let me know please...
Re: 13 years old, Thiland dx March 2016.
Hi again,
1. Keytruda is not approved for ASPS but it is approved for other cancers and people are getting it off label if the oncologist finds it is beneficial. We just received a news that it was prescribed to a boy in US and discussed it here:
http://www.cureasps.org/forum/viewtopic ... 3&start=45
it is not known if this drug is going to prolong our patients lives as there is no information about it. People are trying to get it in the situations when there are no other treatment options and they have already had surgeries and can not have more.
If you want, you can find out of Keytruda is at all approved in your country using internet search or just asking your oncologist to find it out. We do not know that.
2. None of the local ablative techniques can be used for the multiple lung metastases at once, only surgery. You have to understand that with the ablation they destroy about 20 mm of the lung tissue around the met so when multiple lung metastases are ablated, lots of lung tissue is wasted. Ablative procedures are used for the single digit mets that need to be ablated.
1. Keytruda is not approved for ASPS but it is approved for other cancers and people are getting it off label if the oncologist finds it is beneficial. We just received a news that it was prescribed to a boy in US and discussed it here:
http://www.cureasps.org/forum/viewtopic ... 3&start=45
it is not known if this drug is going to prolong our patients lives as there is no information about it. People are trying to get it in the situations when there are no other treatment options and they have already had surgeries and can not have more.
If you want, you can find out of Keytruda is at all approved in your country using internet search or just asking your oncologist to find it out. We do not know that.
2. None of the local ablative techniques can be used for the multiple lung metastases at once, only surgery. You have to understand that with the ablation they destroy about 20 mm of the lung tissue around the met so when multiple lung metastases are ablated, lots of lung tissue is wasted. Ablative procedures are used for the single digit mets that need to be ablated.
Olga
Re: 13 years old, Thiland dx March 2016.
Hi Olga and all"
After consult with Onco and 2nd opinion total 3 of them. 2 of 3 suggested to go Chemo first then evaluate , scan then if can reduce met and or can be surgery.
2 Onco of 3 Onco did not suggested TKI sutent , 1 once suggested Sutent.
1 Onc of 3 Onco suggested start Chemo immediately due to mets are small , should be better more effective than waiting next scan.
1 Onc sugested to wait next scan to ensure ASPS and progressive then start with Sutent or Laser.
We would like to have your suggestion if we shall immediate with Chemo due to effective in small 4mm. Or waiting? So serious situation.
Or any other suggestions are very welcome and thanks in advance...
After consult with Onco and 2nd opinion total 3 of them. 2 of 3 suggested to go Chemo first then evaluate , scan then if can reduce met and or can be surgery.
2 Onco of 3 Onco did not suggested TKI sutent , 1 once suggested Sutent.
1 Onc of 3 Onco suggested start Chemo immediately due to mets are small , should be better more effective than waiting next scan.
1 Onc sugested to wait next scan to ensure ASPS and progressive then start with Sutent or Laser.
We would like to have your suggestion if we shall immediate with Chemo due to effective in small 4mm. Or waiting? So serious situation.
Or any other suggestions are very welcome and thanks in advance...
Re: 13 years old, Thiland dx March 2016.
Hi again,
the traditional chemotherapy is never able to kill all the lung mets in ASPS regardless of the size and only makes sense in combination with the surgery. Have you already sent the CD to Dr.Drewes for the evaluation if he is able to do the surgery?
the traditional chemotherapy is never able to kill all the lung mets in ASPS regardless of the size and only makes sense in combination with the surgery. Have you already sent the CD to Dr.Drewes for the evaluation if he is able to do the surgery?
Olga
Re: 13 years old, Thiland dx March 2016.
Again thank you very much Olga..
The CD was delivered to Coswig last Firday, Dr.Drewes said that he will review and suggest ASAP.
Other Onco in Thailand suggested to start by Sutent and then LAPM at Coswig. Shall we start with Sutent and then Laser?
So, we just have 2 ways, which one we shall go?
1. start chemo => LAPM ?
2. start Sutent => LAPM ?
We asked serveral questions to Onco in Thailand but it is very limited information of this type ASPS.
Olga & all, I am very sorry for my poor English and not in Medical field, but I try to read and communicate with you.
Again thank you..
The CD was delivered to Coswig last Firday, Dr.Drewes said that he will review and suggest ASAP.
Other Onco in Thailand suggested to start by Sutent and then LAPM at Coswig. Shall we start with Sutent and then Laser?
So, we just have 2 ways, which one we shall go?
1. start chemo => LAPM ?
2. start Sutent => LAPM ?
We asked serveral questions to Onco in Thailand but it is very limited information of this type ASPS.
Olga & all, I am very sorry for my poor English and not in Medical field, but I try to read and communicate with you.
Again thank you..
Re: 13 years old, Thiland dx March 2016.
Just wait for Dr.Brewes answer. Also as I remember there was something concerning in the scan results close to the primary tumor area (correct me if I am wrong). Was it investigated additionally?
Olga
Re: 13 years old, Thiland dx March 2016.
Hi,
MRI knee is clear (primary tumor) no any problem.
Thanks..
MRI knee is clear (primary tumor) no any problem.
Thanks..
Re: 13 years old, Thiland dx March 2016.
I would wait for Coswig´s opinion. I would not start Sutent or chemo now.
-
Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: 13 years old, Thiland dx March 2016.
Dear Phura, I agree with the recommendations to postpone Sutent or any other systemic treatment until you receive more information about your son's eligibility for the LAPM lung met resection in Coswig. Based on researched, published, and anecdotal information, the most effective ASPS treatment at this time appears to continue to be resection/ablation/radiosurgery to remove/destroy as many mets as possible and reduce the body's tumor burden to enable it to better fight this very challenging disease. Unfortunately, there is currently no available permanent cure for ASPS, and currently available systemic treatments such as Sutent may or may not be successful in providing sustained long term disease stability so the best treatment approach at this time seems to be to try to manage the disease through pro-active regular scans and resecting/ablating/ treating with radiosurgery as many mets as possible until an effective permanent treatment and cure can be found which will VERY Hopefully be sometime VERY soon. As with everything with this extremely rare and poorly understood disease, there remain too many unknowns, and there are no definitive answers so it is critically important to be as knowledgeable as possible through
extensive research and networking with other ASPS patients/families before making any treatment decisions. My special thoughts and very best wishes are with you and your dear son as you try to make the best treatment decision, and I will be anxiously awaiting your next update. With special hugs, caring thoughts, healing wishes, and continued Hope, Bonni
extensive research and networking with other ASPS patients/families before making any treatment decisions. My special thoughts and very best wishes are with you and your dear son as you try to make the best treatment decision, and I will be anxiously awaiting your next update. With special hugs, caring thoughts, healing wishes, and continued Hope, Bonni
Re: 13 years old, Thiland dx March 2016.
Hi Phura,
I am in the situation as your child currently. I was diagnosed in April 2016, no mets at presentation but have about 15 nodules in the most recent scan in October. I did reach out to Dr. Drewes but ultimately did not send him the CD. I decided to start on systemic treatment with Sutent after consulting with different oncologists. I don't think there is a right answer and in the end you just have to do what you think is best, whether the surgery first and/or systemic treatment and of course picking the right type of surgery which seems to be Dr. Drewe's procedure based on the experiences of the patients on this forum. I will be looking forward to seeing your ultimate decision.
I am in the situation as your child currently. I was diagnosed in April 2016, no mets at presentation but have about 15 nodules in the most recent scan in October. I did reach out to Dr. Drewes but ultimately did not send him the CD. I decided to start on systemic treatment with Sutent after consulting with different oncologists. I don't think there is a right answer and in the end you just have to do what you think is best, whether the surgery first and/or systemic treatment and of course picking the right type of surgery which seems to be Dr. Drewe's procedure based on the experiences of the patients on this forum. I will be looking forward to seeing your ultimate decision.
Re: 13 years old, Thiland dx March 2016.
If you only have those 2 options I personally would go with chemo before laser surgery. I would still wait for Germany´s opinion before starting any systemic treatment, because you must coordinate your systemic treatment with surgery.
I have been given this a lot of thought and my opinion is, that taking Sutent before surgery isn´t the best option. Sutent could keep mets small for some time, but smaller tumors are more difficult to find during surgery. Also before surgery your son will most likely have to take a break from Sutent and this could cause rebound effect. This means that micromets could start growing fast right after surgery. Because of these 2 reasons I wouldn´t start sutent before surgery. At first I didn´t have much faith in chemo, but then I found this article https://www.ncbi.nlm.nih.gov/pubmed/22868503 Looks like Yondelis can actually be effective in ASPS. This was new information to me. I hope other members on this board can point out if my reasoning doens´t make sense.
I have been given this a lot of thought and my opinion is, that taking Sutent before surgery isn´t the best option. Sutent could keep mets small for some time, but smaller tumors are more difficult to find during surgery. Also before surgery your son will most likely have to take a break from Sutent and this could cause rebound effect. This means that micromets could start growing fast right after surgery. Because of these 2 reasons I wouldn´t start sutent before surgery. At first I didn´t have much faith in chemo, but then I found this article https://www.ncbi.nlm.nih.gov/pubmed/22868503 Looks like Yondelis can actually be effective in ASPS. This was new information to me. I hope other members on this board can point out if my reasoning doens´t make sense.
Re: 13 years old, Thiland dx March 2016.
Dear everyone, Olga, Nhi, Bonnie! Mikko,Jussi..
Today we just got recommendation from Dr.Drewes, Coswig from my son CT scan that he said the numbers of nodules is not so much and very small. His opinion in my son case is not indicated for LAPM in this moment. He suggest to control & wait in 3 months. He also recommended for surgery procedure in case of next time evaluation if needed to be LAPM.
We don't know how to proceed without LAPM to control met?
1. Start Chemo to control and prevent other met then scan and wait...
2. TKi , sutent same as Nhi then Scan..wait..
3. Just scan and wait
4. ??
Please kindly let us know your suggestion, we are very very welcome ...we have very small numbers of people who have this kind of knowledge in our country.
Thank you so much to everyone & including PM.
Hope all win and high quality of life..
Today we just got recommendation from Dr.Drewes, Coswig from my son CT scan that he said the numbers of nodules is not so much and very small. His opinion in my son case is not indicated for LAPM in this moment. He suggest to control & wait in 3 months. He also recommended for surgery procedure in case of next time evaluation if needed to be LAPM.
We don't know how to proceed without LAPM to control met?
1. Start Chemo to control and prevent other met then scan and wait...
2. TKi , sutent same as Nhi then Scan..wait..
3. Just scan and wait
4. ??
Please kindly let us know your suggestion, we are very very welcome ...we have very small numbers of people who have this kind of knowledge in our country.
Thank you so much to everyone & including PM.
Hope all win and high quality of life..