AprilDee - Dx 1999

[AprilDee]

Stage: IV (Pulmonary mets)
Histology: Alveolar soft part Sarcoma
Surgery/ treatment: 2004 left limb spare surgery to left thigh, 2008 left above the knee amputation...
Metastasectomy for SVC syndrome Feb 2009, right hilar palliative radiation for obstructive right hilar symptoms Aug 2009


I am 31 year old female, who first encounter a small mass in my left thigh in 1999, It took 4 years for me to be told what I actually had.

My diagnosis spring was in the spring 2003 where in April of 2004 I finally had surgery to remove the growth. It was later that year found to have been in my knee also...and for 4 years went untreated due to lack of insurance coverage. It wasn't till I had an artery bleed due to eruption in my tibia that I was admitted to the hospital in November 2008 that treatment began. I am just know actually being treated for the sarcoma however...

I am wondering if anyone else is being treated with Sutent? I have been told that I am the only one with this Sarcoma who is not in clinical trial that is.

My story is a very frustrating one, and long one. But I am still here fighting the good fight. And after 8 months (started Sutent in Jan. 2010) there has been no more growing of the any of the tumors.

I am just trying to learn more on this disease.... For 10 years things have just been so vague...

[Anders]

HI aprildee, and wellcome to this forum... This is the best place for info of this desease, we have som people here with alot of knowledge.
Your story seems long, and im amazed it took them that long to diagnose it, but again, its a rare desease, and it isnt the first time i hear of this.

I havnt been on sutent... I had my main removed in 2008 (center abbs, about 5cm), then a year past and lungmets showed up.. had chemo for about a half year, then while stable i had my mets removed in germany this year. Hoping no new ones show up, but only time will tell, as it always seems to be with ASPS.

I think Reeza is the only one here getting sutent without being in a program, cus he has relatives with access to the drug. So you are getting this drug free outside a program? May i ask what country you are from?

[Olga]

Hi, welcome on board:(
We have a few people that either are currently on Sutent (sunitinib is its generic name) or have been on it at some point. More info can be found at
http://www.cureasps.org/forum/viewforum.php?f=52
It is a drug from the class of the TKI (tyrosine kinase inhibitors) these are new drugs from the targeted therapy family. There is a drug Cediranib from the same family that is being tested on a clinical trial at the NCI and many people from this board are participating in this trial.

[Bonni Hess]

Dear AprilDee,
Welcome to our CureASPS Discussion Board. I am so sorry for your ASPS diagnosis and for all of the frustrating misdiagnosis and inexcusable delayed treatment that you have experienced during the past ten years, but I am grateful that you have now found your way to our Web site and that you have reached out to our ASPS Community for information and strengthening support. I am grateful too that you are currently undergoing systemic treatment with the promising anti-angiogenic tyrosine kinase inhibitor (TKI) Sutent ,and that you have had stable disease for the past eight months since beginning the Sutent treatment in January. There is a discussion thread for Sutent on this Forum which is located under the Systemic Treatment topic, and the Anti-angiogenic subtopic. It would be very helpful for you to read the entries in the Sutent thread from other ASPS patients who have previously undergone treatment with Sutent, and those who are currently being treated with it. It would also be very helpful to others in the ASPS Community if you would make an entry on the Sutent thread regarding your Sutent experience thus far, and to keep it updated with your scan results and the outcome of your treatment. Because ASPS is so extremely rare, shared anecdotal information is one of our most powerful weapons in fighting this very challenging disease. Where are you receiving your primary oncology care, and are you receiving your Sutent treatment as part of a Clinical Trial, or was the Sutent prescribed by your primary oncologist? My special thoughts and best wishes are with you for a continued successful response to your Sutent treatment, and I will be anxiously awaiting your next update. In the meantime, please take care, stay strong, and keep in touch with this Board as you are able.
With special caring thoughts, healing wishes, and continued Hope,
Bonni Hess, mother of 28 year old Brittany diagnosed in July 2001 at age 19

[AprilDee]

Thank you so much Bonni, Olga and Anders for your replys.

I live in Anchorage, Alaska. (United States)
I am not in clinical trial or program. My Oncologist was able to get medicare (my insurance) to approve the drug for me. They at first denied me so he had to petition, and with that they reversed there decision and approved to cover payment for the drug for me.

[Amanda]

Hello April,
Welcome to the forums!
I am very glad you posted in the forums there is so much information and suport here and it is so important to be informed as much as possible about ASPS!
I am sorry that it took so long for them to diagnosis the ASPS it has happened to others also.
But i am very happy that you are now being treated