Brittany on Cediranib trial Phase 1 in Edmonton

[Bonni Hess]

Dear ASPS Community Friends,
Thankfully, I have more good and encouraging news to share from Brittany's yesterday's three month brain and spinal MRI at the University of Washington. The preliminary scan results showed no new brain or spinal mets, and the previously Gamma Knifed brain mets appear to be no longer visible, which amazed both the radiation oncologist, Dr. Rockhill, and us since all of the scans previous to this one have still shown the mets even though they appeared to be shrinking and necrotic. We are extremely relieved and happy, and are holding VERY tight to Hope that the Cediranib will continue to prevent the growth of new mets, to shrink and destroy all of the remaining ones, and to provide long term sustained stabilization of this insidious disease.
When we shared the devastating news about Paul Maver's tragic loss with Dr. Rockhill, he questioned whether the brain damage that Paul suffered during surgery may have been caused by brain hemmorhage which resulted from him still being on the Cediranib at the time of the surgery, or at least him not having been off of it long enough prior to the surgery, since brain hemmorhage is a known risk of anti-angiogenic medications like Cediranib and Avastin if brain mets are present. Hopefully, at some point we will be able to obtain more information regarding the circumstances of dear Paul's shocking sudden loss, but at this point I strongly urge everyone participating in the Cediranib Trial to have regular brain MRI"s through your personal oncologist since, as with Brittany, the Clinical Trial doesn't follow the brain if brain mets were not present at the time the patient started the Trial. Do not naively assume that if there is no disease progression or increased growth of mets in the areas being followed by the Trial that there isn't or can;t be metastasis elsewhere in the body. It is vitally important to remain vigilant, aware, informed, and pro-active in fighting this unpredictable disease. Take care everyone.
With special caring thoughts and continued Hope,
Bonni

[Olga]

Bonni, thank you for the devoted attention to all the details and prompt posting the resuls, consultations and so on, this information is very important for everyone here on the board. I have a comment re. the excellent response of the Brittany's brain mets treated by the GammaKnife radiosurgery. I would suggest that Brittany's oncologist writes a letter to the insurance company describing this level of the treatment success of the ASPS mets to the radiosurgery in Brittany's case and asking if based on that your request re. coverage of the proposed radiosurgery treatment for the pancreatic met can be reevaluated after the evidence of the efficacy of the radiosurgery treatment for Brittany's ASPS mets was documented by the last brain MRI.

[Bonni Hess]

Dear Olga,
Thank you for your very kind words, and for your valued input and suggestion regarding the possibility of obtaining approval from the insurance company to treat Brittany's unresectable pancreatic met with Cyberknife which was previously denied as being experimental because of lack of available data on the success of this procedure for pancreatic ASPS mets. This is something which we will definitely consider and pursue if Brittany's pancreatic met heartbreakingly stops responding to the Cediranib, but unfortunately, the location of the pancreatic met is at the head of the pancreas and attached to a major blood vessel so unless enough shrinkage has occurred to separate the met from the blood vessel, Cyberknife or other radiosurgery would not be a safe or viable option. At this point, and until another more effective treatment or viable procedure is found, our only option in treating the pancreatic met is to continue with the Cediranib and Hope that it will continue to stabilize Brittany's disease and shrink/destroy her pancreatic met as well as her remaining lung mets. Take care Olga.
With deepest gratitude for your thoughtful input, and with special caring thoughts and continued Hope,
Bonni

[Bonni Hess]

Dear ASPS Community Friends,
Brittany had her monthly Cediranib Clinical Trial clinic visit today in Edmonton and thankfully her blood work, blood pressure, and ECG results continue to be good. April will be the one year anniversary of Brittany starting the Clinical Trial with this promising new medication which has thankfully stabilized the aggressive progression of her disease and provided us with so much strengthened Hope. Brittany's next Clinical Trial chest/abdominal/pelvic CT scans are scheduled in Edmonton on April 8th, and then we will meet with Dr. Sawyer on April 9th to review and discuss the scan results. April 9th is Brittany's 28th Birthday, and we are holding VERY tight to Hope for the special gift of continued good news scan results showing continued stabilization of the disease and shrinkage/necrosis of the remaining mets. As always, I will update the Board with the scan results as soon as possible. In the meantime, please take care everyone and keep the Board updated as you are able.
With special caring thoughts and continued Hope,
Bonni

[wendik]

Bonnie,

Matt is going to Bethesda next Monday, March 22nd for his first restaging. The scans are in the AM and his appointment is that afternoon. Your messages bring us so much hope...We are praying that Matt has the same kind of response as Brittany. His 30th birthday is on Sunday the 21st. Isn't it amazing how birthdays take on a new meaning when you are fighting for your life???

Our best to you and your family.
You are our inspiration...

Wendy and Matt

[Bonni Hess]

Dear Wendy,
Thank you for your very kind words and for your thoughtful update on Matt's upcoming Clinical Trial status scan schedule. My most special thoughts and prayers, very best wishes, and greatest Hope will be with Matt and you on the 22nd for good news scan results which show stabilization of his disease and significant tumor shrinkage/necrosis, and I will be anxiously awaiting your Board update on the results as soon as your time and the situation allow. I will be celebrating Matt's Happy 30th Birthday across the miles with happiest wishes, and holding very tight to Hope that his birthday wishes will come true and that he will receive the gift of healing as he begins his journey into his next decade.
Yes Wendy, with this challenging ASPS battle especially, each birthday is truly a victory, and each day a precious gift to be celebrated and Lived to the fullest. Prayerfully, the Cediranib will make it possible for our beloved children to have a wonderful, happy, and healthy Lifetime of birthdays to celebrate. Please give Matt a special HAPPY 30th BIRTHDAY!! hug from me and my family, take care, and know that Matt, you, and your family are held very close in my heart and my most special thoughts.
Reaching out heart to heart with special caring and continued Hope,
Bonni

[Amanda]

I am sorry i have not posted back sooner...
Bonnie this is great news!!
I cant believe it has been now almost a year she has been on the trial and i am so happy that the response she and everyone else has been having has been so amazing! :)She is so strong and has gone thru this trial with its ups and downs like a tiger.
It really brings so much hope to so many!
April 9th is a very special day for me and untill now i didnt know that was her birthday. She shares a birthday with a very strong and beautiful woman. my mother <3
See i knew Brittany was exceptional, hehe
I will keep you all in are prayers and I am looking forward to hearing how things are when you post back.
I am sure that it will again be happy news!

[Bonni Hess]

Dear ASPS Community Friends,
Yesterday with VERY happy hearts and strengthened Hope we CELEBRATED!! Brittany's Happy 28th Birthday and the almost one year anniversary of her starting the Cediranib Clinical Trial in Edmonton with the priceless gift of continued GOOD NEWS!! from her Thursday's twelve month Clinical Trial status chest/abdominal/pelvic CT scans which showed no new tumors, and, according to Dr. Sawyer, no visible sign of any of her previous multiple lung mets other than residual scar tissue from her ablated lung mets!!!!!!!!!! The written radiologist report was not yet available due to some technical problems, so we don't yet have specific information about the size/status of the pancreatic met, but Dr. Sawyer said that from his audio review of the scan report it has not grown, and he is very happy and encouraged by Brittany's continued very successful response to the Cediranib. I will post an updated report on the Board with the details from the finalized radiologist report once we receive it, but in the meantime we are continuing the joyous CELEBRATION!! of Brittany's incredible 28 years of Life and her yesterday's wonderful scan results with a special party shared together with family and friends tonight . Take care everyone, please keep in touch with the Board as you are able, and enjoy a most beautiful Springtime.
With special caring thoughts and continued Hope,
Bonni

[Amanda]

Dear Bonnie
YAY!!!!
I am happy to hear this news and that all is going so well

Happy 28th birthday Brittany!!!

[wendik]

What FANTASTIC news this is!!!! It gives us so much hope! We are thrilled for all of you and pray that Brittany's amazing response continues.

Happy birthday....

Wendy & Matt

[Bonni Hess]

Dear ASPS Community Friends,
Thank you Amanda and Wendy for sharing the special joy and strengthened Hope of Brittany's continued good scan results with so much special happiness and caring. Your support and encouragement is so strengthening and mean so much to us.
We received the finalized written copy of the radiologist report today from Dr. Sawyer which confirms that the three targeted lung lesions are "not visible"!! Also, the report states that "the gallbaldder, spleen, pancreas, adrenal glands, and kidneys are unremarkable", which Dr. Sawyer is going to follow-up on the comment about the pancreas being "unremarkable" to determine if the pancreatic lesion is still there. When Brittany began the Cediranib treatment a year ago this month, she had mets in the spleen, small bowel, duodenum, and pancreas, but there has been no mention of the mets in the spleen, small bowel, and duodenum since early in her treatment, and we are holding VERY tight to Hope that the term "unremarkable" means that the pancreatic lesion has now possibly also disappeared. The wonderful conclusion of the radiologist report is "Stable findings"!! Our celebration and the Hope continue.
With special caring thoughts and continued Hope,
Bonni

[Olga]

Bonni - are you sure that this is Brittany's scan report:(?

[Bonni Hess]

Hi Olga,
Thankfully, and miraculously, YES! this is Brittany's April 9th, 2010 scan report as confirmed by Dr. Sawyer's audio and visual review! It is what we could only imagine and Hope for a year ago at this time when Brittany's disease had become so aggressive and disseminated, and there seemed to be no possible treatment options for the tumor in the head of the pancreas which devastatingly could not be resected, ablated, or treated with radiosurgery. We are awaiting Dr.Sawyer's follow-up on the radiologist's description of the pancreas as being "unremarkable", but the information won't be available until late next week since Dr. Sawyer is away from his office attending meetings. "Unremarkable" seems to be a good thing, but we are anxious to have better clarification and more specific details. We remain vigilant in following Brittany with regular brain and bone scans that aren't being done as part of the Clinial Trial in Edmonton, and she is scheduled to have a bone scan in Seattle at the end of this month, and will have another brain MRI in June or July. Take care Olga and enjoy today's beautiful Northwest sunshine.
With special caring thoughts and continued Hope,
Bonni

[Fictional]

Fantastic news!! Way to go, Brittany!

[DottyW]

What wonderful news! I think unremarkable is a remarkable word. What a difference ayear makes. It is so encouraging to feel that the Cediranib is really working on this disease. We all need hope and encouragement especially on the days when our loved ones are having to endure the side effects of this treatment. So far, Jordanne has been feeling well enough back on the trial to have some good times with friends and even come to work for awhile. We celebrate with you and your family Brittany's continued improvement.
Life is precious, handle with prayer.
Dotty