Brittany on Cediranib trial Phase 1 in Edmonton

[Bonni Hess]

Dear Debbie,
Thank you for your special caring and support which is so very strengthening and means so much on this difficult journey which we share.
With deepest gratitude, caring thoughts, and continued Hope,
Bonni

[Amanda]

I need smiles an i just got huge ones coming to the forum tonight about a few of are ASPS family!

Bonnie, You are a wonderful mommy! Thank you for sharing this an thank you again i needed smiles <3

[Bonni Hess]

Dear Amanda,
I am so grateful that Brittany's good scan results were able to bring you some well deserved smiles and am deeply grateful too for your very kind and gracious caring and words of special support in the midst of all of your post op pain and challenging recovery from your difficult surgery. Smiles and postive thoughts can be very healing so keep smiling when you are able, and know that I am sending special healing smiles and thoughts your way. Hopefully all of us on this Board can keep the good news and happy smiles coming!!
Holding you very close in my heart and reaching out to embrace you with gentle hugs, deepest caring, healing wishes, much love, and continued Hope,
Bonni

[Jorge]

Great news!
Thanks for sharing the encouraging news. I'm so glad for you. Keep on, Brittany.

[Bonni Hess]

Dear ASPS Community Friends,
Saint Patrick's Day, Monday, March 17th happily brought good luck with the VERY GOOD!! results of Brittany's three month brain and spinal MRI's at the University of Washington in Seattle which thankfully showed continued disease stability, no new tumors, and no evidence of any of the previously treated tumors We are SO deeply grateful for the now 59 months of sustained disease stability that Cediranib has provided for Brittany and are holding VERY tight to Hope that it will continue to be successful in preventing the growth and development of new tumors. Additionally, we are celebrating with greatest joy Brittany's engagement this past weekend to her longtime boyfriend who romantically asked her to marry him on a weekend boating trip on beautiful Puget Sound After so much heartache, anguish, pain, suffering, and devastating loss on this long, very challenging, and roller coaster 12 and a half year ASPS journey, it is wonderful to finally have some happiness to share and to brighten the darkness that ASPS has brought to our Lives. We continue the journey with the knowledge and understanding that Brittany could heartbreakingly develop resistance to the Cediranib and disease progression at any time, as we also continue to relentlessly search for a permanent treatment and cure for this insidious disease. Take care everyone and thank you for your continued shared special caring, encouragement, and support which is so very strengthening.
With a heart filled with great relief and happiness, special caring thoughts and healing wishes for everyone, and continued Hope,
Bonni

[D.ap]

Dear ASPS Community Friends,
Saint Patrick's Day, Monday, March 17th happily brought good luck with the VERY GOOD!! results of Brittany's three month brain and spinal MRI's at the University of Washington in Seattle which thankfully showed continued disease stability, no new tumors, and no evidence of any of the previously treated tumors We are SO deeply grateful for the now 59 months of sustained disease stability that Cediranib has provided for Brittany and are holding VERY tight to Hope that it will continue to be successful in preventing the growth and development of new tumors. Additionally, we are celebrating with greatest joy Brittany's engagement this past weekend to her longtime boyfriend who romantically asked her to marry him on a weekend boating trip on beautiful Puget Sound After so much heartache, anguish, pain, suffering, and devastating loss on this long, very challenging, and roller coaster 12 and a half year ASPS journey, it is wonderful to finally have some happiness to share and to brighten the darkness that ASPS has brought to our Lives. We continue the journey with the knowledge and understanding that Brittany could heartbreakingly develop resistance to the Cediranib and disease progression at any time, as we also continue to relentelssly search for a permanent treatment and cure for this insidious disease. Take care everyone and thank you for your continued shared special caring, encouragement, and support which is so very strengthening.
With a heart filled with great relief and happiness, special caring thoughts and healing wishes for everyone, and continued Hope,
Bonni

Bonni and family we are also doing the happy dance with the scan news! You are an angel sharing the news with us.
Congradulations to Brittany as well. When is the big day? You all so deserve the happy news .

Much love
Debbie and family

[Amanda]

WOW! <3

Double great news!

I am so happy to hear this news!

Hug them for me an tell him he is amazing for being in love and for them both seeing beyond to futures for them to share <3

Bonnie, has anyone said or implied that the ASPS maybe dead? If it or any showing any vascular flow? If not is there a suggestion to remove any one that is large to see if it is indeed dead?

ASPS does grant miracles an in some patients that were in devastating situation.. I am praying for a miracle for us all! But, I think Brittany many in one now

Love and huge hugs and smiles!

[Bonni Hess]

Dear Debbie and Amanda,
Thank you for sharing our double joy with so much genuine happiness and with your very kind and caring words which truly touch our happy hearts .
In response to your questions dear Amanda, there is apparently no way to determine if Brittany's "ASPS may be dead", but that would truly be our greatest Hope and every wish come true!! Since Brittany is, to our knowledge, the patient with the longest sustained stability on Cediranib, she is really a pioneer with so many unknowns and nothing or no one to compare to or learn from. Dr. Sawyer thinks that she is thankfully probably macroscopically tumor free, but unfortunately not microscopically. It would be like playing Russian Roulette for Brittany to discontinue taking the Cediranib as long as she is stable and able to tolerate the chronic debilitating side effects since if she did quit taking the drug and then heartbreakingly developed disease progression, she could not resume taking Cediranib because of the Clinical Trial protocol in addition to the possible discontinued development and availability of the drug. All of Brittany's previous innumerous and widely disseminated mets thankfully appear to have completely disappeared on all of her scans except for a couple of spots in her lung which Dr. Sawyer feels are probably residual dead tumor tissue since they have remained unchanged since Brittany began taking Cediranib in April 2009. We would not want to subject Brittany to an invasive thoracic surgery and the associated risks to try to determine if the couple of remaining long stable and unchanged lesions are necrotic, and this has never been suggested by Dr. Sawyer. You raised an interesting question about whether there is any indication of vascular flow from the couple of remaining seemingly dead lung lesions. We have never observed this in any of our very thorough scan reviews with Dr. Sawyer and the radiologist, but we will address this issue when Brittany has her chest/abdominal/pelvic scans in Edmonton on April 24th. In addition to her 60 month ( FIVE YEARS!!) Clinical Trial scans in Edmonton on April 24th which we are holding VERY tight to Hope will show continued disease stability and no new tumors, Brittany will be having her annual full body bone scan on April 28th which will also Hopefully show no new tumors.
I too am Hoping for the miracle of complete healing for Brittany, you, and all of our ASPS family patients dear Amanda, and continue to hold you and everyone in our ASPS Community very close in my heart and most caring thoughts.
With a happy heart, warm hugs, deepest gratitude, special caring, healing wishes, much love, and continued Hope,
Bonni

[Amanda]

I believe she will be ok now
I really do! She is about to hit a five year mark! One of the things we all prayed for!
I believe that all of our bodies are different in ways that much effect the ASPS.. we are our own rain forest! Sometimes our forests an its climate can kill or maim ASPS an win the war!
Or become stable for 30 years after being told they were "riddled with tumors"
I have found stress an attitude play a role also in this fight!

I pray an also believe that she is going to win this an may have already! I am beside myself in happiness!

Much love to you an your family an our ASPS warrior

[Bonni Hess]

Dear Amanda,
Thank you for your always kind and encourging words, your continued very gracious shared support, and your strong and positive belief in Brittany and her ability to successfully fight her disease and ultimately win her courageous battle
Stress and attitude certainly do seem to play a role in this very difficult battle, and it is very important to try to keep stress at a minimum and a positive attitude as much as possible, which I know is much easier said than done with all of the challenges, pain, suffering, fear, and heartache created by this insidious disease. That is one of the reasons that the shared special caring, support, understanding, and encouragement from ASPS Community members on this Board is so critically important for all of us who are involved in fighting this extremely rare and unpredictable cancer. We all need each other.
With deepest gratitude, special caring thoughts, healing wishes, much love, and continued Hope,
Bonni

[Bonni Hess]

Dear ASPS Community Friends,
April has been a month of VERY happy celebration for our family with Brittany's victorious Happy 32nd Birthday on April 9th and yesterday's VERY GOOD FIVE YEAR!!!!! Cediranib Clinical Trial chest CT and abdominal/pelvic MRI scan results in Edmonton which thankfully showed continued disease stability with no new tumors!! Together with Brittany's wonderful dedicated Phase One Clinical Trial oncologist, Dr. Michael Sawyer, and the very caring Cross Cancer Institute Clinical Trial nurses we celebrated with greatest joy (and chocolate fudge cake, candles, and balloon ) the miraculous FIVE YEARS of stable disease and apparent disappearance of Brittany's innumerous and widely disseminated mets which were present when she first began the Cediranib/Rifampicin Clinical Trial in late April 2009. Because of Dr. Sawyer's compassionate willingness to accept Brittany into the Trial despite her very advanced and rapidly progressing disease and dismal prognosis five years ago, because he believes in her and cares about her, because he is willing to work together with us and the pharmaceutical company to address our concerns and accomodate our requests, because of the Cediranib, and because of Brittany's incredible invincible spirit, her undeterrred determination, and her courageous willingness to suffer and endure the chronic harsh side effects of the Cedranib, we still have our precious Brittany who we would almost certainly have tragically lost to this insidious disease several years ago because of her unresectable and untreatable pancreatic met and others that have amazingly now completely disappeared from her scans.
As always, we are painfully aware that Brittany could heartbreakingly develop resistance to the Cediranib and disease progression at any time, and our relentless search for a permanent treatment and cure continues, but today we are celebrating her victorious FIVE YEARS of disease stability with hearts filled with immense joy, deepest gratitude to Dr. Sawyer and his nursing staff, profound appreciation for Cediranib and to Astra Zeneca who developed this promising new drug and made it available for patient Clinical Trial, and with continued Hope,
Bonni

[D.ap]

Bonni, Brittany and family

What wonderful news!
There could of not been a better birthday present given to a much deserved family and Brittany !
Happy late birthday to Brittany

Much love
Debbie and family

[Bonni Hess]

Dear Debbie,
Thank you for sharing the great joy of Brittany's victorious 32nd Birthday, her very good and encouraging scan results, and her FIVE YEAR Cediranib Clinical Trial Anniversary with your always kind and caring words and deeply appreciated support and encouragement which means so much. It is my great Hope that you and everyone in our ASPS Community will also have good news to share as we continue together on this difficult ASPS journey.
With deepest gratitude, a very happy heart, special caring thoughts, and continued Hope,
Bonni

[Amanda]

OMG YAY!!!!!!!
This is so wonderful and brings so much hope to others! I told my Onc about Brittany an the medication an you know what he knew about her!

What a wonderful birthday gift! An what a wonderful gift this is to everyone touched by this evil ASPS...

[Bonni Hess]

Thank you so much dear Amanda. Your special words, joyful spirit, and genuine caring always bring a smile to my heart and mean so very much to me and all of the Hess family . That is very interesting that your oncologist is familiar with Brittany and her thus far successful Cediranib response! Did he say where he had heard about Brittany's case from? We have always thought that Astra Zeneca should do some kind of study about Brittany's case to try to determine what factors may have contributed to her having a more significant and sustained long term response to the Cediranib than most/all of the other Cediranib patients have had that we are personally aware of. We continue to wonder if it could be due to her having started the drug dosage at 45 mg. per day and then reducing to 30 mg. per day due to the severity of the side effects at 45 mg., if it is a combination of her having previously been treated with the GVAX Immunotherapy drug and/or the ARQ-197, or if Brittany has a unique physical make-up or different type of ASPS than the other patitents. As with everything with this extremely rare and poorly understood disease, there remain so many unanswered questions and so many unknowns, and our search for answers continues as does our profound gratitude for the very successful and sustained Cediranib response that Brittany has thankfully had thus far. Despite Brittany's incredible five years of Cediranib caused disease stability and dramatic tumor disappearance, we will never become complacent in our vigilant monitoring of her disease and posting of scan results updates, knowing far too well how very unpredictable this insidious disease can be, and feeling it is extremely important to share as much information as possible with the ASPS Community so that patients and their family members can Hopefully benefit from it.
My very best wishes and most positive thoughts will be with you when you have your upcoming scans in two weeks, and I will be anxiously awaiting your update on the results when your time and the situation allow. In the meantime, take care dear Amanda and have a beautiful Springtime day
With deepest gratitude, special caring thoughts, healing wishes, and continued Hope,
Bonni