Website History and Purpose - Jim Hess

[Bonni Hess]

Hello ASPS patients and advocates for the patient.

My name is Jim Hess, father of Brittany, and husband of Bonni, one of the founders of this website. When our daughter was diagnosed with ASPS nearly 10 years ago, one could Google the topic and come up with zero results. This amazed me and I then truly realized what a small group we that are battling ASPS were in. After searching basic cancer websites, I finally found one ASPS patient living in New York. Together with her and her mother, we found out that there were very few doctors in the USA with any experience with this disease. In fact, we found that if a hosptal had a Sarcoma Center, ASPS was not usually one they had encountered. Only standard sarcoma treatments were offered that frequently resulted in the death of the patient. It was decided that since there were virtually no medical publications, other than a 1999 statistical publication by MD Anderson on ASPS, we needed to gather as much information as we could from the patients themselves and find out what might be working and what might not be working. We formed a website called alveolarspsarcoma.net for the purpose of being a "rallying place" for those out there that were trying to find on-line help. In 2002, we were the only "hit" when conducting a Google search of Alveolar Soft Part Sarcoma. We then started gathering our own statistical information on as many patients as we could find for the purpose of forming an anecdotal information base. The definition of "anecdotal" in this instance simply means "information derived through the patient's own experience". After the co-founder of the website lost her daughter to ASPS, the website fell apart and appears to be inactive today. I might point out that it was this person that first found Dr. Littrup at the Karmanos Cancer Institute and she was his first ASPS patient for the successful cryoablation of several tumors in her lungs. This was an example of "anecdotal" information that we then passed on to others.

This website was subsequently formed by a cancer research doctor, Yossi Landesman, who he himself has a daughter with ASPS and my wife Bonni, who were both on the Board of Directors of the previous website. Ivan Goroun, an ASPS patient himself with website formation experience, is the son of Olga Tkatcheva and they are our website administers. Olga is a tireless contributor of medical research information. Bonni's position on the Board of Directors is "Family Support and Patient Outreach". In this role she reaches out to every new patient who checks in with the website seeking help. All members on the Board of Directors are non paid volunteers and the website is paid for by a fundraiser headed by our President, Yossi Landesman. As before, the purpose of this website was to be a "rallying place" for those searching the web for information. Over the past 10 years of fighting this disease with our daughter Brittany, along with Ivan's experiences and those of several other ASPS patients, we have learned much about this disease. Tragically in 2005 Brittany's older brother and mentor, our son Tate was killed in a car accident only two months after one of Brittany's three open brain surgeries. Since that time, Bonni has been tireless in her mission to keep our daughter alive and to try to help others with this disease. This website and her dedication to finding a cure for ASPS has become her life. I now play a lessor role with the website but of course am the sounding board for Bonni and other contributors of information.

It saddens me immensely to find that Bonni and other active contributors to this website have been recently criticized for trying to help other patients by offering suggestions based upon our own experience and the experience of many others who are still living and from those that are not. Over the past 10 years, Brittany has had over 23 surgical procedures and has participated in three clinical trials. We share the results of Brittany's procedures and her own trials and tribulations with anyone seeking advice. Since we were aware that in the past, systemic treatments with chemotherapy and standard radiation treatments have had no positive effect, and often a very negative effect to fighting this disease, our approach had been to either kill the metastatic tumors by means of Radio Frequency Ablation, Cryoablation, or Gamma Knife, or by means of open surgery when the other less invasive procedures are not available. Three years ago, Brittany found that she had metastasis to her pancreas, spleen, duodenum, and small bowel, none of which could be surgically removed. The tumor in her pancreas was over 3 cm. We were devastated and thought the end was near. Due to "anecdotal" information we obtained from a patient in London who was participating in a clinical trial for Cediranib which also crosses the blood brain barrier, we pursued and were accepted into a clinical trial in Edmonton, Alberta for Cediranib. After 25 months on this clinical trial, Brittany's tumors throughout her body have shrunk to the point that they are barely visible. We totally credit Cediranib for her being alive today. Neither we nor the doctors fully understand why it is not working on all ASPS patients. We believe and have discussed with her doctors our theory that "tumor load" may have been an advantage with Brittany's success due to our policy of killing or removing metastatic tumors whenever they were to appear. We are extremely aware that Cediranib is "not a cure" for ASPS, and does not work for all patients, but it has given our daughter two years of precious life with uncomfortable, but tolerable side effects. We are extremely aware that one day it will not continue to work for her and she may then experience the "rebound effect". We are trying to determine what to do when that event occurs. That is our mission at present.

We are aware that there a now "splinter groups" out there with the same goal, to find a cure for ASPS and we applaud these groups. However, we that are battling ASPS are a very small faction of the sarcoma population and we cannot afford to "burn bridges" with negative criticism and infighting when there are so few bridges to burn. We in the ASPS community all have the same mission and we must all work together. The Board of Directors of this website along with the active contributors try to do their best to offer hope and suggestions, based upon personal experience, for those fighting the disease. We believe that the sharing of experiences of those patients afflicted with this rare disease is vital to finding the cure and strongly hope all patients will share their experiences. I sincerely hope that the harsh criticism of individuals who volunteer their time and effort for the common goal of all patients will come to an end. We are not doctors and certainly admit to not fully understanding the biology of the disease, but we do have valuable insights to offer based upon on our own experience. Let us all work together in our goal of finding the cure to Alveolar Soft Part Sarcoma.
Thank you.
Jim Hess

[D.ap]

Hello everyone

I am posting here to hopefully bump the well written post of Jim Hess for those of you who may or may not of read it.
I have found it enlightening and helpful to read to give me at the VERY LEAST a very good understanding of how incredibly far we've come by virtue of patients and administrators who have gotten us to this point in understanding and treatments options thus far

As I understand it there was a time when limb sparing surgeries were not considered or as a result of wide spread ASPS .
Through the networking of patients and medical experts we were able to impress upon the surgeons to attempt the surgeries and thus far prolonged patients lives
How many of us have used and read the medical papers and been so thankful for that information.
Don't know about you all but I don't think there are enough hours in the day beyond my work day to do this research.

We are so very fortunate to have ALL of us involved in our treatment of ASPS by contributing to the forum and by keeping all up to date on how we are doing and how we got to that point through our treatment choices.

Anything we can contribute whether it be support , information or concerns are important to everyone here. I feel that is the least we can do in repayment of all that has been given to us.
It is my dream ,as it could be all of yours, that by virtue of sharing world wide we can find a cure .

Please take a moment to read it sometime today and make a commitment to contribute and give back in someway each week as we owe it to each other.
Thinking of you all
Love
Debbie

[Bonni Hess]

Dear Debbie,
Thank you for bringing this important issue back to the attention of the Board and for encouraging more active participation by EVERYONE in the ASPS Community in sharing invaluable anecdotal treatment information. My husband Jim and you have already discussed and explained so well the critical importance of shared information so I won't repeat everything again, but am Hoping that ASPS patients and their families who visit this site will recognize and understand that shared anecdotal information is one of our most powerful weapons in fighting this extremely rare and poorly understood disease. Without EVERYONE actively participating and sharing their treatment experiences and results, only a small portion of potentially Life saving information is available from those few of us who do actively participate and generously and graciously share on this Discussion Board. The information that is shared CAN, and HAS, saved precious Lives including our precious Brittany's. The more information we have, the more informed we all are to better fight this very challenging disease with as much knowledge as possible. To accomodate those who for whatever reason don't want to publicly disclose their names, there is an "Anonymous" topic on which to post information. For those who feel that they don't have anything important to share, one never knows what information may be important and beneficial to another patient. For those who don't feel that they have the time to post, please take/make the time because the Life you save may ultimately be your own!! This is an extremely difficult battle which requires every possible weapon. Please participate and please share EVERYONE!!
With special caring thoughts and continued Hope,
Bonni
Bonni

[jcs2007]

I just wanted to take this time to thank all you who have contributed to this website which was so invaluable to me when my son was first diagnosed in 2007. I was so lost and this website gave me invaluable information and most importantly support and hope. My son is still on ARQ trial and a recent radiation treatment to one lesion in the lung which we are waiting on the next ct to see how this met responded. Again, I agree that we are all on the same mission to cure our loved ones.

[Amanda]

Hello JCS <3 I am so glad that you are both well <3

An i echo your posting of appreciation an that it has helped me immensely!

[D.ap]

I felt compelled to say a big THANK YOU to all my friends that helped to get Josh to the point he is with his care .
Just wanted to be sure all knew how much we love you all!

Debbie and family

[D.ap]

As night is upon us my heart felt thank you to all who made ASPS forum a place of refuge , knowledge and love.
Amanda would want this

I miss her
Debbie

[D.ap]

“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~

Amanda

[Bonni Hess]

Dear Amanda was truly a special gift to all of us in the ASPS Community. Throughout her courageous and increasingly difficult battle she graciously and generously shared her anecdotal treatment experiences, her genuine caring, her strengthening support, encouragement, friendship, and love, her invincible positive attitude, her inspirational perspectives, her delightful sense of humor, and her ongoing Hope. Yes, she is deeply missed and will always be remembered by those of us whose Lives she touched.

[D.ap]

May I be the first to enter The post of 2009 as Amanda could of would of reported
Read and know she'd be the first to hold true of what is right for us / you in your treatment .

http://www.cureasps.org/forum/viewtopic.php?t=369#p1096