Dear All,
First of all let me thank the moderator and creators of this wonderful community, I have been reading and following up on this community for almost 5 months now and its wonderful.
My brother, aged 27 was detected with ASPS on his lower left leg, size of the tumor was about 4.5 cms in October 2012. the surgery was done in November followed by about 30 localized radiations. All this has happened in India.
We are not very clear on the role of Chemo post surgery.
Can someone enlighten us on this, would be happy to send relevant info, if need be.
Thanks
Karunn Kandoi
kandoikk@gmail.com
Bharat from India, Dx October 2012
Re: Role of Chemo post surgery
Karunn, hi, thank you for participating in our board and you kind words for its creation. We are tying to provide the best service to the people willing to share and to learn from each other about their experience and actions to fight ASPS.
If you provide us with the name (or a nickname) of you brother I will change the name of the topic and you can later use it to update his status as we all do here.
To answer your question:
1. As I understand your question is about the traditional, cytotoxic chemotherapy, i.e. MAID or GemTax etc.
there is lots of said about the inconclusiveness of the role of the adjuvant chemotherapy in ASPS. There are even some articles written specifically about the results being inconclusive. The problem is that there is no uniform setting in which the chemotherapy was given (before/after surgery or in the palliative setting no intention to treat/no surgery at all) and the results are not directly comparable at all as the setting was not comparable also. We have an information of the single cases when it was beneficial and people that were deemed incurable/unresectable are alive long term after their received a chemotherapy in an unresectable metastatic disease setting and saw their liver or lung metastases slowly dissolving as the years were passing by or remained radio-graphically (on the scans - so they are may be scars now) stable for decades (their primary tumors were uniformly resected though). We had more people who's lung or other metastases initially responded to chemotherapy but later progressed after a period of some stability/regression.
Your brother's situation is entirely different though. He does not have any presently visible metastases as of yet but as we all understand the worry is about dormant/micro-metastases being already present but currently not visible (to small). The chemotherapy is looked at with the aim to kill these dormant mets. Unfortunately there is even less information about usefulness of the adjuvant chemotherapy in the non-metastatic setting. There is one very intriguing article written by Andrea Ferrari, a great oncologist from Italy, who was studying the ASPS in kids.
The link to her artcile abstract is here:
Alveolar soft part sarcoma in children and adolescents: A report from the Soft-Tissue Sarcoma Italian Cooperative Group.
http://www.ncbi.nlm.nih.gov/pubmed/11142485
with the full text here:
http://annonc.oxfordjournals.org/conten ... /1445.long
As a part of their treatment, most of the kids were given an adjuvant chemotherapy (15) and they had unusually low incidence of the metastases with 12 being mets free at 5 years mark. I would contact the co-author of the article at the e-mail provided and ask what data they might have about the metastatic rate past the 5 years mark they used in an article. It is also known that some people do not get any metastases ever i.e. their ASPS is cured by the initial surgery (it is like 25% of the overall cases). There is a chance that more of these cases happens to be between these kids from Italy or the ASPS in kids is less aggressive than it is in the young adults (or it is simply found earlier and has not disseminated yet).
There are no guidelines to recommend the chemotherapy for localized and resected ASPS as there is no data to form an opinion on, medicine is a statistics based discipline.
If you provide us with the name (or a nickname) of you brother I will change the name of the topic and you can later use it to update his status as we all do here.
To answer your question:
1. As I understand your question is about the traditional, cytotoxic chemotherapy, i.e. MAID or GemTax etc.
there is lots of said about the inconclusiveness of the role of the adjuvant chemotherapy in ASPS. There are even some articles written specifically about the results being inconclusive. The problem is that there is no uniform setting in which the chemotherapy was given (before/after surgery or in the palliative setting no intention to treat/no surgery at all) and the results are not directly comparable at all as the setting was not comparable also. We have an information of the single cases when it was beneficial and people that were deemed incurable/unresectable are alive long term after their received a chemotherapy in an unresectable metastatic disease setting and saw their liver or lung metastases slowly dissolving as the years were passing by or remained radio-graphically (on the scans - so they are may be scars now) stable for decades (their primary tumors were uniformly resected though). We had more people who's lung or other metastases initially responded to chemotherapy but later progressed after a period of some stability/regression.
Your brother's situation is entirely different though. He does not have any presently visible metastases as of yet but as we all understand the worry is about dormant/micro-metastases being already present but currently not visible (to small). The chemotherapy is looked at with the aim to kill these dormant mets. Unfortunately there is even less information about usefulness of the adjuvant chemotherapy in the non-metastatic setting. There is one very intriguing article written by Andrea Ferrari, a great oncologist from Italy, who was studying the ASPS in kids.
The link to her artcile abstract is here:
Alveolar soft part sarcoma in children and adolescents: A report from the Soft-Tissue Sarcoma Italian Cooperative Group.
http://www.ncbi.nlm.nih.gov/pubmed/11142485
with the full text here:
http://annonc.oxfordjournals.org/conten ... /1445.long
As a part of their treatment, most of the kids were given an adjuvant chemotherapy (15) and they had unusually low incidence of the metastases with 12 being mets free at 5 years mark. I would contact the co-author of the article at the e-mail provided and ask what data they might have about the metastatic rate past the 5 years mark they used in an article. It is also known that some people do not get any metastases ever i.e. their ASPS is cured by the initial surgery (it is like 25% of the overall cases). There is a chance that more of these cases happens to be between these kids from Italy or the ASPS in kids is less aggressive than it is in the young adults (or it is simply found earlier and has not disseminated yet).
There are no guidelines to recommend the chemotherapy for localized and resected ASPS as there is no data to form an opinion on, medicine is a statistics based discipline.
Olga
Re: Role of Chemo post surgery
Hi Olga,
Thank you for your prompt response. My brother's name is Bharat, you may update the thread. Thank you for your insights, I do plan to write the suggested Oncologist in Italy for further guidance/pointers. Do keep me in loop if you come across any more info on this.
Regards
Karunn
Thank you for your prompt response. My brother's name is Bharat, you may update the thread. Thank you for your insights, I do plan to write the suggested Oncologist in Italy for further guidance/pointers. Do keep me in loop if you come across any more info on this.
Regards
Karunn
-
Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Bharat from India, Dx October 2012
Dear Karunn,
I am so deeply sorry about your brother Bharat's ASPS diagnosis, but am grateful that you found your way to this site and that you have reached out for information. Olga has provided you with some excellent information regarding traditional chemo and references for some studies which have been done that I Hope you will explore and find helpful.
I am unclear from your entry as to whether or not your brother has been diagnosed with any mets in any other parts of his body. If it has not already been done, chest/abdominal/pelvic CT scans as well as a full body bone scan and a brain MRI should be done to determine if there is any metastasis at this time.
Your brother is fortunate to have your special caring, help, and support which is so very important in this battle with this challenging disease. Please keep the Board updated as you are able since we all share this journey and care very much about each member of our ASPS Community.
With special caring thoughts and continued Hope,
Bonni Hess, mother of 30 year old Brittany diagnosed eleven and a half years ago at age 19 in July 2001
I am so deeply sorry about your brother Bharat's ASPS diagnosis, but am grateful that you found your way to this site and that you have reached out for information. Olga has provided you with some excellent information regarding traditional chemo and references for some studies which have been done that I Hope you will explore and find helpful.
I am unclear from your entry as to whether or not your brother has been diagnosed with any mets in any other parts of his body. If it has not already been done, chest/abdominal/pelvic CT scans as well as a full body bone scan and a brain MRI should be done to determine if there is any metastasis at this time.
Your brother is fortunate to have your special caring, help, and support which is so very important in this battle with this challenging disease. Please keep the Board updated as you are able since we all share this journey and care very much about each member of our ASPS Community.
With special caring thoughts and continued Hope,
Bonni Hess, mother of 30 year old Brittany diagnosed eleven and a half years ago at age 19 in July 2001
Re: Bharat from India, Dx October 2012
Dear Bonni,
Thank you for your post, kind words and guidance. The full body scan is already done and luckily we do not see any Metastasis. Since it was largely local and had not reached bone, team of doctors here did a good job of taking it out with good margins. Margins are clear as well, ranging from 0.2 MM to 0.7 MM. Preventive radiotherapy is done as well. Bharat is very positive in his approach and has already back to his normal life and hopefully it will be like that for years to come.
We sincerely hope Brittany is doing well and is leading a disease free life and lives long.
Thank You for everything
Best Wishes
Karunn Kandoi
Thank you for your post, kind words and guidance. The full body scan is already done and luckily we do not see any Metastasis. Since it was largely local and had not reached bone, team of doctors here did a good job of taking it out with good margins. Margins are clear as well, ranging from 0.2 MM to 0.7 MM. Preventive radiotherapy is done as well. Bharat is very positive in his approach and has already back to his normal life and hopefully it will be like that for years to come.
We sincerely hope Brittany is doing well and is leading a disease free life and lives long.
Thank You for everything
Best Wishes
Karunn Kandoi
Re: Bharat from India, Dx October 2012
Thanks for your perspective. I think the strength of this website is that each can provide his or her unique experiences. The procedure I explained is in "non-medical and non-scientific" language (except the diagnosis listing), so I'm sure it may sound confusing. During this treatment, I was able to watch the physical alignment improvements as they were occuring during each manipulation. This experience would be similar to watching a severely fractured bone reset in place or a dislocated shoulder popped back into place, and seeing the immediate physical alignment/improvement in the person.
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Re: Bharat from India, Dx October 2012
Hellosabahat wrote:Thanks for your perspective. I think the strength of this website is that each can provide his or her unique experiences. The procedure I explained is in "non-medical and non-scientific" language (except the diagnosis listing), so I'm sure it may sound confusing. During this treatment, I was able to watch the physical alignment improvements as they were occuring during each manipulation. This experience would be similar to watching a severely fractured bone reset in place or a dislocated shoulder popped back into place, and seeing the immediate physical alignment/improvement in the person.
I assume this is Bharat?
Was the above treatment for aid in circulation ?
We have doctors that are chiropractors .
Bone aligners
Sincerely
Debbie
http://en.m.wikipedia.org/wiki/Chiropractic
Debbie