Anthony Salisbury - RIP 26/01/2009

[kstull001]

All--

It is with horrible news that I have to write that Anthony's disease has grown. He has been on Sutent for approximately 3 months now and there was significant progression in his disease. Some as much as 10 mm or whatever they measure on scans. His doctor has recommended hospice, but after talking with Anthony - he does not want to accept this option. I'm beginning to think he is not well off. He cannot function without the use of his walker, he has lost almost 100 pounds, and consistently needs to use oxygen. His legs both swell due to inactivity and the fact that he cannot lie down.

We don't know what to do. I thought all that I listed above was normal for cancer patients...maybe it's not? What do you all suggest as our next step? We have reached out again to Maki, but he refuses to do a phone consult and we cannot travel there until Anthony is in a better condition. Just travelling there the first time took a lot out of him. Maki had told us that if Sutent doesn't work...then we were to try Yondelis. Argg....will someone find a cure already???

Speaking of, Anthony is having a Fundraiser to raise funds for a trial that is sponsored by the Cure ASPS board...I think...anyway...here is the link to it:
http://www.knockindownasps.com/

Hope all is well with all of you!

[Bonni Hess]

Dear Kim,
I am so deeply saddened and sorry to read your heartbreaking update on this site and the Caring Bridge site regarding the devastating results of Anthony's Monday's scans. I was so very Hopeful that his Sutent treatment would be successful in shrinking/killing his tumors and stabilizing the progression of his disease. I know how extremely discouraging and frightening this news is, but am Hopeful that another effective treatment can/will be found. I have seen a couple of new sarcoma treatments mentioned in my research that you could possibly explore with Anthony's oncologists including, Dasatinib which specifically includes ASPS as a targeted disease for the treatment, Brivanib which is being tested on soft tissue sarcomas, and Reolysin which is also being tested on soft tissue sarcomas metastatic to the lung. Brivanib is being tested in Clinical Trial at MSK, as well as several other study locations so perhaps this is one treatment which you could discuss/explore with Dr. Maki since he is at MSK. If you would like Clinical Trial information on any of these treatments, please let me know. I just recently talked with another ASPS patient who is currently being treated with Yondelis and has encouragingly had seven months of stabilization of her lung mets and primary tumor since beginning the treatment, although unfortunately several ASPS patients who I am familiar with who had undergone treatment with ET-743 ( the former name for Yondelis) several years ago heartbreakingly did not have a successful response to the treatment. Also, has Radiofrequency or Cryoablation been considered/discussed with the doctors as a possible treatment option to try to shrink/destroy some of Anthony's largest lung mets? Please know that I am here to try to help in any way that I can with information sharing and strengthening support, take care, stay strong, hold tight to Hope, give Anthony and yourself gentle hugs from me, and keep this forum updated as you are able.
With special caring thoughts and continued Hope,
Bonni

[Fictional]

I'm so sorry to hear this, Kim. Anthony is in our prayers.

I don't know whether this would help or not, but I wonder whether he could be a candidate for bronchoscopic phototherapy or laser therapy. This is done at places like Mayo Clinic, but also Boston, Los Angeles, San Diego, and I think NCI. The idea behind this is that a doctor zaps tumor that is pressing down on the airways. I am thinking he can't lie flat because of the tumor pressing on his airway (bronci). From what I understand, it can be done through bronchoscopy and not involve surgery...is not as risky.

If Anthony is very short of breath and uncomfortable because of this, he shouldn't be reluctant to take morphine. Morphine really helps 'air hunger' and it usually can be adjusted so that he doesn't cause respiratory depression. It also improves venous return from the lungs and can reduce some lung fluid, in addition to helping with any pain.

[kstull001]

Bonni and 'F'--

Thank you so much for your kind responses. I don't know if I can ever express how much this forum means to me. You have all truly helped us during our progression throughout this trying time. I really don't know if I can write how thankful I am for you. I was speaking with my friend last night (Bonni, it's my friend katie), and we were talking about the forum and wondering what the heck people did before the internet...argggg!

Anyho, thank you so much for the ideas. I will present them to Dr. Skubitz and we may try a new doctor at the Mayo. We have been disappointed with the Mayo twice (they like to bill, but not to help). But I'm willing to try anything. He is now taking Celebrex (as was suggested the first time chemo didn't work) just to be on something and fighting. We are waiting for his strength to pump up a bit before we start travelling to Mayo (It's about an hour and half drive) and then consider the Yondelis trial. Dr. Skubtiz mentioned that the closest one was Chicago...which is a 5 hour drive - but again nothing much. I grew up in Iowa so we have tons of friends and family there. Anyho...i'm rambling...it's my first day back at work....and it's hard to concentrate. Anyway...thank you again and please continue praying and sharing throughts on possible treatment options. Dr. Maki originally told us to try items in this order
1. Sutent
2. Yodelis
3. Nelfinafir (NIH trial)

So, I think we may try Yodelis next, but confirm with Maki. Thank you so much! Have a wonderful day!

Sincerely,
Kim

[Beth]

Dear Kim,
I posted a remark on the Nelfinavir thread. There is link to an article about Nelfinavir there. My prayers are with you and Anthony -- he is blessed to have you -- I am a mother to a young man with asps (25 years old), and my heart is full of love and admiration for you,
Beth

[kstull001]

Everyone--

It is with a heavy heart to let you know that Anthony has passed. He passed today at 1:45 pm. We have requested that his tumors be used for ASPS research. If you would like any additional information, please visit www.caringbridge.org/visit/anthonysalisbury

I miss him more each minute,
Kim

[Bonni Hess]

Dearest Kim,
As I wrote in my Caring Bridge message to you and Anthony's dear family, it is with the deepest and most profound sorrow and grief that we received the devastating news of your beloved Anthony's sudden passing. Our hearts are broken, our tears are endless, and we so deeply share the pain of the tragic loss of such a courageous young man who fought so very hard to Live. We in the ASPS Community are a family, and our family has lost someone very special to all of us who came to know him through your faithful updates about his increasingly challenging journey. The depth and abundance of your love and caring for him was reflected so beautifully in your writing about him. He was so very blessed to have had you and your constant love, your loving care, and your dedicated support to strengthen him throughout his extremely difficult battle. Anthony's immense courage will remain a source of great inspiration to all of us who continue to fight this terrible battle with this insidious disease. The very generous and gracious gift of his tumors for desperately needed ASPS research will provide a legacy of continued Hope that someday an effective treatment and cure WILL be found so that no more precious Lives will be lost to this monstrous cancer which has cruelly inflicted so much pain, suffering,and sorrow, and tragically taken so many promising young Lives.
Deeply sharing the profound sorrow of your devastating loss, and holding you, your angel Anthony, and his dear family and friends very close in our aching hearts, our most caring thoughts, and our very special prayers,
On behalf of all of my Family,
Bonni Hess