Will from San Diego - Dx 2002 - RIP 17/04/2012

[Amanda]

Hello Will
I am so glad you saw Dr H isnt he a love! He is a sarcoma survivor btw so we are special to him
I am very happy to hear that they can do this with out taking part of the rib out.. trust me it is a tuff recovery i am still dealing with.

[Olga]

Will - there is a relevant answer posted by Dotty here:
http://www.cureasps.org/forum/viewtopic.php?f=45&t=638
about the reimbursement and assistance that are available to cover most of the travel expenses when participating in a clinical trial at NCI.

[willnocon]

Hi all

I finished radiation on the 15th of June. Pretty easy. Still a little bit of tenderness around my rib, but the pain is 90% gone. I feel much better now. But what I really wanted to tell everyone is that the NIH has a new study they are recruiting for. This study is for using Cediranib and Sunitinib for ASPS. The person is randomized in which of the two drugs you start with. When your body stops responding to that drug, they switch you to the other one. I'm excited to say I'll be the first person on the study. I leave for DC in mid July to get poked, prodded and consented for the study. I'm not sure if the study is on the clinictrials.gov site yet, but it should be there soon for anyone interested.

Will

[Bonni Hess]

Dear Will,
It was so nice to hear from you again and to hear that you have now successfully completed your rib radiation treatments (was it Cybernife?) with a good resolution of the pain thus far. I will be holding very tight to Hope that the radiation was successful in shrinking and destroying your rib met, and will be anxiously awaiting the results of your post radiation scans. Thank you for sharing the important information about the new randomized Cediranib/Suntinib Clinical Trial at NIH. It sounds like an interesting approach to the efficacy testing of both drugs. I am very glad and excited that you will be able to start the Trial sometime in July if all goes well with your physical evaluation, poking, and prodding. Please keep the Board updated as you are able on your Trial experience, medication side effects, and treatment results. In the meantime, enjoy your break from treatments, have a very good recovery from your radiation treatment and a very successful outcome to it, and keep in touch as you are able.
With gentle hugs, special caring, healing wishes, positive thoughts, and continued Hope,
Bonni

[DottyW]

Hi Will,
Could you provide some detail about the type of radiation you had to your bones. Jordanne has had some new mets in different bones, including her skull and we could use some anecdotal info from ASPS patients who have had radiation. She has one in the sternum as well as skull mets, radius and any residual from her recent hip replacement
Thanking you in advance for any info you can provide.
Good luck on the trial. Please insist on taking reports home with you to go over with your oncologist. We are learning a little late in the game that they don't always share all of the information in your clinic visits. Maybe they assume you already know.
Blessings,
Dotty

[jreyesnocon]

Hi All,

This is Jasmine, Will's wife. It pains me to bring this news, William Nocon passed away on April 17, 2012 at 3:46 am. He was surrounded by his family and best friends. As I have described to our 3 year old twins, Damon and Danica, he is now "sleeping with the angels".

As you are aware from Will's last posts he enrolled in the Cediranib and Sunitinib Phase II trial at NIH. He travelled from San Diego to NIH once a month from Summer 2011 - Fall 2011. He had disease progression despite one course of Sunitinib. Per protocol, he then moved on to one course of Cediranib, and although his scans showed some stabilization in the areas under study, he had metastasis to his spine and brain, and other parts of the body. He did not make his December 2011 appointment at NIH due to the excruciating pain he was experiencing in his back/neck and could not travel. Will had emergency spinal surgery for tumor removal and spinal decompression in mid December. He made it home on Christmas eve in time for a family filled celebration at our home on Christmas day. In January 2012 he was admitted again for anemia and received a blood transfusion. It was at this point that Will knew that he was not going to beat this disease.

Although he battled ASPS for 10 years, ASPS did not define him. He loved the Philadelphia 76ers, the San Diego Chargers, San Diego State Basketball, Wrestling, and comics. He was also a music lover especially New Edition and The Temptations, among many other interests/ hobbies. He was a respectable and responsible man, a man of great strenghth and courage. But most of all he was a true friend to many, a proud family man, a wonderful husband and a loving father---- this is what defined him.

Thank you to icureASPS for making available the most current research. Thank you also to all the friends on this blog who have provided a wealth of information to help Will make the most informed decisions with his treatments. I journeyed with Will since we met in 2004. Altough his journey has ended, I would like to continue to journey with the others fighting ASPS in anyway I could. As this is my goal, I've been in touch with the president of icureasps.com.

Jasmine Reyes-Nocon

[Kathy]

Jasmine,
We are so very sorry to hear about Will's passing. You and your beautiful children will continue to be in our thoughts and prayers. My heart is breaking for you and for our loved ones who have to endure so much.
hugs and prayers,
Kathy

[Olga]

Jasmine, thank you for finding the strength to let us know and for telling us a little about Will. I am very grateful to you for contacting Yosef Landesman, our President and Cancer Research Director, and offering to help in our search for cure, it is really appreciated by all of us on this board.

[Bonni Hess]

Dear Jasmine,
My heart is so heavy with the profound sorrow of dear Will's devastating loss after his courageous ten year battle with this insidious disease which has now tragically taken yet another precious young Life. I am so deeply saddened and sorry too for the heartbreaking pain and suffering which he endured during the past several months of his increasingly difficult battle, but am trying to find comfort in knowing that his suffering is now over and his body is free from the ravages of this cruel cancer which he fought so bravely. I had been so very Hopeful that the Cediranib/Sunitinib Trial would provide stabilization of his disease and tumor shrinkage/disappearance, but was increasingly concerned when he didn't post any further updates after last summer regarding his Trial experience and results.
It is so kind of you to reach out so thoughtfully to this Board to share this deeply painful information about Will's final battle and his devastating passing, and I am humbled by your incredible strength in the midst of your deep grief and sorrow. Thank you dear Jasmine for providing special insights into Will's interests, his passion for Life, his love of family and friends, and the kind of man that he was beyond being an ASPS patient. I am so grateful that in spite of the challenges of his disease, that he was able to embrace and Live his Life as fully as possible. He has truly left a beautiful legacy of courage, strength, and love for your precious young children to remember him by, and to learn from.
Thank you for your very gracious willingness to help continue the critically important search for an ASPS cure which tragically did not come in time for your beloved Will. Your special caring and support is deeply appreciated by all of us who continue this difficult journey, and who will continue to be inspired by Will and the great courage and determination with which he fought his battle.
Holding your angel Will, you, and your family very close in my aching heart and most caring thoughts, and sharing your profound sorrow with deepest sympathy, friendship, and love,
Bonni