Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi Everybody! My name is Jessie and I am new to the ASPS forums! I am not new to ASPS though. I have seen these forums for awhile now, but for some reason never had the urge to post my story but I think its finally that time! So in 2002, when I was 17 years old (that makes me 25 now so you can stop trying to count on your fingers ), I was diagnosed with ASPS of my left calf. After the tumor was resected, I had both internal and external radiation which we all know now probably wasn't my best move. In July of 2008, a couple days after graduating nursing school, I had a lung nodule resected. Around that time I had another tumor resected from the same spot on my calf. The path came back as Leiomyosarcoma which they believe was radiation induced. I currently live in Phoenix, AZ but after 3 tumors, my oncologist is now at Dana Farber in Boston. On routine follow up scans in September we found a ASPS tumor in my subcarinal region, right below my trachea. Biopsy confirmed ASPS but surgery is not ideal. So here I am today. I started the Phase 2 clinical trial of Cediranib at the NCI in late October. So far so good. I know there is a specific Cediranib forum so I can't wait to get started on that. Thank you for having just a great website/forum. Its nice to know that we aren't alone! And I can't wait to hear from others!

[Edit by Ivan] Jessie's cediranib trial thread - http://www.cureasps.org/forum/viewtopic.php?f=45&t=591

Hello Jessie
Welcome to the forums and i am sorry that you also have ASPS..
When you have time copy and paist this post in the personal updates area
http://www.cureasps.org/forum/viewforum.php?f=4
I am glad they found this *one*YAY* tumor and that you are in a treatment to kill it. What is the size? The very lucky thing is when it is found and when a drug or a surgery makes a positive change! Some can stay healthy off just what you are doing and some just surgery. The seek and destroy is for everyone a constant and it is what makes the difference
ASPS can be lived thru and has been lived thru by many many patients!
Keep hope and fight and smile!
Please, respond back in Personals <3

Hi Jessie, and welcome

What treatment options did you consider for the one met found? Personally, I would have the scans sent to a number of surgeons, and ablation specialists before starting on cediranib.

The side effects are not great, and it's probably to keep that option for later when you really really need it - unless there is indeed no alternative.

Hey Jesse,
I met you on the shuttle to NIH, glad you are on the site now, I didn't see you this last time, hope all is well.
Eric

Eric,
It was great meeting you. You were the first ASPS patient I have ever met and it made me very excited! I was there on Monday so if you were there Tuesday maybe that is why I didn't see you but hopefully next time. I'm doing good, hope all is well with you too!

Ivan,
Even though I am fortunate enough to only have one ASPS tumor, it is in a location where it is right next to my aorta and pulmonary artery. After consulting with the cardiothoracic surgeons at Dana Farber, it was felt that while it was not inoperable, it was not recommended. The size of the tumor alone did not make it ideal either. No, the side effects are not great and I would love to not have to be on Cediranib and would like it as an option later...it was the best decision I could make at that time! Thank you for welcoming me into the forum!

So what is your plan - to shrink the tumor as much as possible on Cediranib, and then have it resected when it becomes more viable?

Hi Everybody!
Sorry for such a delay in updating the forum. Last time I updated, I was having a positive response on Cediranib but wanting to get a surgeons opinion on tumor removal. Since that time I am currently off Cediranib and had a successful thoracotomy for my ASPS tumor that was adhered to my esophagus and trachea. I found an amazing surgeon in the hospital where I work that spoke directly with the NIH and Dr. Butrynski to make sure that everyone was on the same page and that the tumor would be sent to the appropriate location. I know I am fortunate enough to have my tumors metastasis one at a time and some might not believe that initiating Cediranib was the best choice. But after my surgery, I feel even more confident of my choice because due to all the adhesions, my surgeon was not confident the surgery would have been as successful if it had been any larger. So that is that. I go back to getting regular CTs and MRIs and continue to be followed by Dr. Butrynski. I have been battling this for almost 9 years, the hope and wait. But for the time being, I am happy and smile a lot. I will keep you all updated.

Jessie

Jessie - congrats on a successful resection. Is it your second surgery on that lung?
If the cediranib made the R0 surgery possible, it was really worth it. If you do not mind sharing the name of the good thoracic surgeon here -please do as the surgeon is the best sarcoma patient's friend and who knows who else is looking for the daring and thorough thoracic surgeon in US familiar with the ASPS.

Olga - yes this was my second surgery on this lung, making the scar tissue a little more challenging. My surgeons name is Dr. Ross Bremner.He is the chief of Thoracic surgery at St. Joseph's Hospital in Phoenix. I think I am his first ASPS patient but he has a strong interest in thoracic oncology and does a lot of thoracic oncology research. If anybody is in the Arizona area, I would be more than happy to pass along his information.

Jessie

Congratulations, Jessie! So you shrunk it and resected it - perfect. Just to confirm - you currently have NED, and are planning to stay off Cediranib, while keeping a close eye on things through regular scans?

Yeah, scarring is a problem with repeated thoracotomies. Hopefully if anything else pops up for you in not such a challenging location it can be deal with a simple ablation, which is not nearly as painful and doesn't do nearly as much damage to healthy tissue.

Ivan - you are correct. I am currently NED and no longer will be on Cediranib. My next scans will sometime this month.

How long did you have to be off cediranib before of the surgery? Paula is thinking about having some intervention and it should be said that there is a safety period to let it wash out.

Olga - Yvonne and Dr. Kummar said you need to be off Cediranib for 3 days usually, but they wanted me off for 7 days when I was having surgery in an area like the lungs. And even though I was coming off the Cediranib, they literally only wanted me off for 7 days and not any longer. Hope that helps.

Jessie, thank you very much for the helpful updates. Hope you check in again after your scans. Best of luck with them!

Dear Jessie,
It is so good to hear from you and to hear the wonderful news about the very successful outcome of your Cediranib Trial and thoracic surgery . I share your great joy that you are now NED, and my very best wishes are with you for continued good news of NED from your upcoming scans. Your nine year survival of this challenging disease with having had only a limited number of mets during that time is truly a source of great encouragement and Hope for all of us on this Board. Please tell Dr. Butrynski "Hello " from the Hesses when you see him again, update the Board as you are able, take care, stay happy, and keep smiling .
With happy hugs, shared joy, special caring thoughts, and continued Hope,
Bonni