Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hello Everybody. My name is Jessie and I am new to the ASPS forums. I posted my story on the personal forums if you are interested! I started the Phase 2 Clinical trial on the NCI in MD in late October. I currently just have one ASPS tumor in my chest and it was decided that surgery was not ideal. This is the first time I have ever done any systemic treatment and I am SO grateful for the trial and Cediranib. I started off feeling awesome and gradually the effects of the Cediranib have take their toll. I have experienced the diarrhea, nausea, fatigue, loss of appetite and a lot of the same symptoms most people have been feeling. I had my first re-staging right before Christmas and I had 30% shrinkage of the tumor. I go in on Valentine's Day for my second re-staging and I am anxious for the results. I am so thankful for this forum and being able to read the stories of others. Its nice to know that someone understands what I am going through. I have the most amazing family and friends who are very supportive but even they are the first to admit they can't understand exactly what I am going through! So this is just perfect! Thank you!! Can't wait to talk to you all while we are on this journey!

Dear Jessie,
Welcome to the Board. I am so deeply sorry for your ASPS diagnosis, but am grateful that you have now decided to join the Board and that you have shared your information with us. Thank you for the double effort of posting your history with this disease in the Guest Book topic, and then the information about your Cediranib participation and experience in this topic. I am so grateful that you are now on the promising Cediranib Clinical Trial at NIH and that you have had a successful response to the medication thus far with stablization of your disease and tumor shrinkage. Unfortunately, the negative side effects that you describe that you are experiencing are very common for the patients taking Cediranib, but Hopefully they are tolerable for you. I am so happy that you have a very supportive family and group of friends which is so vitally important in this difficult battle, but the shared understanding and support of those who truly know what you are going through is also important. Those of us in the ASPS Community need to utilize every resource available to fight this extremely rare and poorly understood disease, and shared anecdotal experience and treatment information is one of our most powerful weapons. You had mentioned in your Guest Book entry that you are receiving your primary oncology care at Dana Farber in Boston. Is Dr. James Butrynski your oncologist there? If so, please tell him "HELLO " from the Hess Family as he was Brittany's primary Sarcoma oncologist at Seattle Cancer Care Alliance in Seattle before he moved to Boston a couple of years ago. He is an excellent, dedicated, very knowledgeable, kind, and caring doctor and we really miss him . My most positive thoughts and very best wishes will be with you next Monday for a MOST happy Valentine's Day with VERY good news from your scan results, and I will be anxiously awaiting your update on this forum. In the meantime, please take care Jessie, travel safe to Maryland, know that I am here to help in any way with shared information about Brittany's Cediranib experience, and keep in touch with the Board as you are able.
With special caring thoughts, healing wishes, and continued Hope,
Bonni Hess, mother of 28 year old Brittany diagnosed in 2001 at age 19

Hello Everybody,
Sorry for the late update, I have been at work since getting home from the NIH. I had a PET and CT scan showing 37% shrinkage of my tumor! Good news! But I guess this seems to be the "norm" after a couple cycles of Cediranib. I spoke with Yvonne and Dr. Kummar about where I would go from here? Did they think it will just go away with the Cediranib or do they think it will progress? Their thought was, now that the tumor has shrunk, if I was able to have it resected - then that would be my best option. So I will remain on Cediranib at this time and talk to Dr. Butrynski (Yes, Bonni he is my oncologist and he is fabulous!) about having my tumor resected. My family and I are doing our research for thoracic surgeons in Arizona to look at my scans and see if they can resect while waiting to hear back from Dr. Butrynski. So if anybody knows any great surgeons, I would like to know! I am still able to manage the side effects with medication. Have good and bad days and work takes a lot of me, but I continue to work full time. The support on these forums are amazing and I enjoy reading about how everyone is doing. Thank you for all the support!

Dear Jessie,
Thank you so much for your thoughtful update. I am so happy for your very good and encouraging scan results which showed continued stable disease and increased tumor shrinkage . How large is the subcarinal tumor now that it has shrunk by 37%? With its location near the aorta and pulmonary artery, it is probably not possible to treat it with Cryoablation or Radiofrequency Ablation, but if it has shrunk enough is it possibly now far away enough from the aorta and artery that Cryo or RFA could be considered? If Cryoablation is a possibility, Dr. Peter Littrup at Karmanos Cancer Institute in Detroit is excellent and to my knowledge has the most experience ablating ASPS pulmonary mets. I think that it would certainly be worthwhile for you to at least contact him to have him review your scans and give you an opinion as to whether or not you are a candidate for Cryo which would be a much less invasive procedure than thoracic surgery. Regarding recommendations for thoracic surgeons, 'K' who you can read about in the Personal Update section on this Board, underwent a very successful thoracic surgery this past October performed by Dr. Brian Reemsten at UCLA to remove a dangerously located met in her atrium. 'F' said that Dr. Reemsten is excellent, very experienced, and highly regarded. Unfortunately, 'F' no longer actively participates on this Board, but if you would like to contact her for more information and input about Dr. Reemsten I can give you her contact information if you write to me at my personal e-mail address which is BonniHess@aol.com Also, Dr. Sugarbaker in Boston is another highly respected and experienced thoracic surgeon. He practices at Brigham and Women's Hospital. He has performed very successful thoracic surgeries for one of our ASPS patients on this Board who prefers to remain anonymous, but if you are interested I can give you the contact information for her parents. I am so happy that you found your way to Dr. Butrynski at Dana Farber. He is an excellent Sarcoma oncologist, a very kind and caring person, and extremely dedicated to his work and his patients. Again, please tell him "HELLO " from the Hess Family. He should also be able to provide you with some good thoracic surgeon recommendations if he feels that resection is now a viable option. Polish ASPS patient Paula whose sister Mania writes to update about Paula on this Board, is also now receiving her oncolgy care from Dr. Butrynski, and she just recently started the Cediranib Trial at NIH so perhaps you can connect with her through a message to her on this Board, and then arrange to meet her when you are in Boston or at NIH in Bethesda if you are there at the same time. In the meantime, please take care Jessie, know how deeply I share the great joy and strengthened Hope of your wonderful scan results, have a great President's Day weekend, and keep in touch with the Board as you are able. Also, if your parents or family members ever want to talk, please tell them that they are welcome to contact me anytime, and also we would love to have their participation on the Board if they need any information and/or shared support and encouragement.
With happy hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni

As per Jessie's update, she's now off the trial due to NED after surgery - http://cureasps.org/forum/viewtopic.php?f=4&t=590#p3327

YAY!!!