Brittany on Cediranib trial Phase 1 in Edmonton

[Amanda]

Happy 30th Birthday Brittany!!! <3
An yay stable!!!

[Bonni Hess]

Dear ASPS Community Friends,
As today we CELEBRATE!! with immense joy Brittany's HAPPY 30th BIRTHDAY and the gift of her precious Life, we also celebrate the VERY GOOD!! results of her three month brain and spinal MRI's on this past Friday, April 6th which thankfully showed no new tumors . The journey and this challenging battle continue, but today we take time to CELEBRATE!! Life Take care everyone and enjoy a beautiful Springtime.
With a happy heart and continued Hope,
Bonni

[Olga]

Happy birthday Brittany and congrats on having the best gift any sarcoma patient would wish to get - these good scans after the very difficult situation that you were 2 years ago are the real achievement, you earned them!

[Amanda]

Happy 30th!!!
Happy results!
I love coming to this thread it always make me smile!

*hugs to all of you*

[Bonni Hess]

Dear Olga and Amanda,
Thank you for sharing the joy of Brittany's good scan results and her victorious Happy 30th Birthday with your special happy wishes, kindness, thoughtfulness, and caring friendship which means so much. Thankfully, Brittany was feeling good enough to enjoy a beautiful and enchanted evening of CELEBRATION at her two day early surprise Cinderella Birthday Ball on Saturday night, but heartbreakingly at the family Birthday Celebration dinner on her actual Birthday on April 9th, we had to rush her to the emergency room for treatment of a sudden onset of Cediranib caused severe headache, nausea, and vomiting for which she was hospitalized overnight to try to stabilize her symptoms with intravenous re-hydration and anti-nausea and pain meds. As Brittany begins a new decade on her incredible Life's journey, the challenges of this difficult battle continue, as well as the great Hope that someday soon a permanent cure WILL be found for this insidious disease which overshadowed and consumed the entire second decade of her precious young Life.
With deepest gratitude for your happy wishes, and with continued Hope,
Bonni

[Bonni Hess]

Dear ASPS Community Friends,
Brittany's May 4th scan results in Edmonton thankfully brought VERY GOOD NEWS!! of continued disease stability and no new tumors . She has now had 36 months of disease stability and dramatic tumor shrinkage/disappearance since starting to take Cediranib on April 28, 2009. We are so deeply grateful for the very successful response that Brittany has had to the Cediranib thus far, and for the strengthened Hope that it has given her and our family.
We are also very thankful that Brittany has been able to obtain some relief from her severe, chronic, debilitating post-op spinal pain as well as from some of the negative side effects of the Cediranib including the ongoing nausea and vomiting through Acupuncture treatment which she began three weeks ago. Brittany's highly regarded medical pain specialist had heartbreakingly exhausted all currently available medical pain treatment options for her, so we sought alternative treatment from a very experienced and knowledgeable Acupuncture specialist who has thus far been able to attain some very positive results.
As I write this my heart is very heavy with the devastating news which was posted on the Personal Updates Forum about the tragic losses of Sree and Will, as well as another ASPS patient who lost her courageous battle a month ago but wanted news of her death to be kept private. As Brittany's ASPS journey continues, we will carry all of them, and the too many others who have gone before, in our hearts and thoughts and will continue the battle that they fought so bravely, but devastatingly were unable to win.
With special caring thoughts and continued Hope,
Bonni

[Kathy]

Thank you for posting the update on Brittany! We were eager to hear how she was doing! This is fantastic news and we are very happy for you all. This is such an emotional ride and the recent news regarding Sree and Will and now the young lady you mentioned breaks my heart. I think of you and your daughter everyday and say a prayer. I know we have never met, but you and all the ASPS patients and families are always in my heart and mind!
hugs and love,
kathy

[Bonni Hess]

Dear Kathy,
Thank you for your very kind words of caring, and for sharing Brittany's good scan results with so much special joy. It is true that we have never met, but yet I feel like you, Tom, and all of the ASPS patients and their families are like family, I care very deeply about each of you, and I feel a very special closeness and bond with all of you because we all share this difficult ASPS battle together, and we all know far too well the many challenges and heartaches that this roller coaster journey brings. Although ASPS is extremely rare and little known by the great majority of people and even most doctors, we need not walk alone on this journey. We all have each other to share invaluable researched and anecdotal treatment information with, as well as strengthening support and encouragement. Hopefully everyone in the ASPS Community will reach out to do so as you have done, and continue to do so graciously.
Heart to heart with deepest gratitude, special caring thoughts, love, healing wishes for Tom, and continued Hope,
Bonni

[MarietjievdMerwe]

Dear Bonni,
I just read about Brittany and am overjoyed!!! :) There is always Hope. She really is prove of that.
We will continue Hoping.
Kind regards.
Marietjie.

[Bonni Hess]

Dear Marietjie,
Thank you for your very thoughtful message and kind words. Hope, and the special caring support and encouragement of wonderful people like you is truly what gets us through each day on this roller coaster journey with this challenging disease.
With "Groete", deepest gratitude, special caring thoughts, and continued Hope,
Bonni

[Bonni Hess]

Dear ASPS Community Friends,
"Essentially stable appearance, with no evidence of new metastatic disease" is the VERY good and encouraging conclusion of the radiologist report from Brittany's thirty eight month Cediranib Clinical Trial status chest/abdominal/pelvic CT scans on June 28th in Edmonton, Alberta . Additionally, Brittany's three month monitoring brain and spinal MRI's which were done on June 22nd at the University of Washington in Seattle also VERY thankfully showed continued stable disease with no new tumors, and Brittany's radiation oncologist said that he can no longer even see where any of the brain mets were that were Gamma Knifed a few years ago!
Dr. Sawyer, Brittany's extremely knowledgeable and highly regarded Clinical Trial oncologist, also shared some encouraging and relieving news about the possibility of continued availability of Cediranib, at least for now. This issue has been of great concern to us, and we will continue to closely follow the situation and to share any information that we obtain regarding the continued development and production of Cediranib.
With this good news regarding Brittany's wonderful scan results and continued disease stability, there is also heartbreakingly some bad news to share as Brittany has recently been diagnosed with vision blurring cataracts which are most likely the result of her previous high dose and long term steroid treatment to help reduce her brain met and post Gamma Knife brain swelling six years ago. However, it is unknown what the actual cause of the cataracts are, and whether the cataracts may have been caused by the Cediranib.Treating the cataracts with cataract surgery has created a difficult dilemma because of the concern regarding possible hemorrhage and problems with healing associated with Cediranib use, especially since Brittany has now been taking Cediranib for so long. Because of her 38 months of Cediranib treatment, Brittany is now truly a pioneer in virgin territory with this drug, and there are many unknowns. Dr. Sawyer is very concerned about the possible risks to Brittany's vision that might be involved with cataract surgery if there was uncontrollable bleeding or problems with post surgery healing, so we are postponing cataract surgery for now. I am sharing this information to make other Cediranib patients aware of the risks of any type of surgery while you are taking Cediranib, and to urge you to discuss any type of proposed medical procedure with your oncologist before proceding with it.
We continue to be profoundly grateful for Brittany's significant, long term, and thus far sustained successful response to Cediranib, and to hold VERY tight to Hope for continued disease stability. Her next Clinical Trial scans are scheduled for the end of August, and as always, I will post the results as soon as possible. In the meantime, take care everyone, have a beautiful summer, and please update the Board as you are able. The information which you share may save another ASPS patient's Life.
With special caring thoughts for all of you, and with a heart filled with the great joy of good scan results and continued Hope,
Bonni

[Johannes]

Hello Bonni,

Thanks for sharing these great news with us! Bravo!

Regarding the surgery, do you know what the prognosis for the cataract is if you do not proceed with the surgery? Also, there must be some recommendation available for how much time Brittany would have to be off Cediranib (before and after the surgery) - but I guess you have discussed that with Dr. Sawyer.

Take care,
Johannes

[Bonni Hess]

Hi Johannes,
Thank you for your very thoughtful and kind response to the update about Brittany's good scan results.
Regarding your question about the cataract prognosis if Brittany doesn't have the cataract surgery now, we will need to discuss that with her opthalmologist, but unfortunately I think that the cataracts will probably continue to grow causing increasing blurred vision. It is a wait and see situation right now which we will continue to monitor closely. Dr. Sawyer didn't give us any kind of a time frame recommendation for abstaining from the Cediranib pre and post cataract surgery because he is perplexed about what would be the best and safest decision since he is very concerned about the length of time that Brittany has been taking the Cediranib and the unknown factor of what long term affect that may have had on her risk of hemorrhage and the ability to heal from surgery. The surgical removal of her superficial abdominal met two years ago was a much easier decision to make because the bleeding could be controlled if necessary by applying pressure to the incision, but there is no way to apply pressure to the eye if hemorrhage occurred, and the risk of the eye not healing could result in devastating loss of vision. It is a very difficult dilemma, and one which we heartbreakingly don't have any good answers for right now. I will keep the Board updated on this situation and our decision.
I Hope that Elisa is doing well and that you are both enjoying a wonderful and relaxing summer. Please take care Johannes and give yourself and Elisa special hugs from me.
With much appreciation for your kind response, and with special caring thoughts, healing wishes for Elisa, and continued Hope,
Bonni

[Amanda]

Hello Bonnie!
I am so happy she is doing so well on Ced an wow it really has been a long time yay !!!
It has been over a month and i was wondering how she is feeling and how her eyes are now an if she has made a decision about what to do yet :/

Huge and love to you and family!

[Bonni Hess]

Dear ASPS Community Friends,
Having been away from the computer and the Board for the past week with Summertime travels, activities, and company, I am just now getting a chance to post the VERY HAPPY NEWS AND VERY GOOD RESULTS!! of Brittany's August 23rd forty month Cediranib Clinical Trial chest/abdominal/pelvic CT scans in Edmonton which VERY thankfully and relievingly showed continued stable disease with no new tumors .
We happily and gratefully also received the additional very good news that Astra Zeneca has approved Dr. Sawyer's request for Brittany to be allowed to have her status scans done every three months instead of every two months which will help to reduce the amount of concerning CT scan radiation which she receives, as well as the stress, fatigue, and expense of traveling to Edmonton every two months. To our knowledge, Brittany may currently have the longest sustained disease stability of any Cediranib patient, so she is really a pioneer in untested waters as to what the scanning protocol should be. Because of the well documented potential for developed resistance to Cediranib and aggressive disease progression, we will maintain Brittany's three month brain MRI schedule in Seattle despite her radiation oncologist's repeated strong suggestions that we move to having them every four to five months instead. We know that vigilant scanning is vitally important to finding and treating any new mets at the smallest possible size, and we know too how very unpredictable this insidious disease can be. Since MRI's don't pose the risk of large amounts of radiation exposure that CT scans do, the brain MRI provides us a safer way to monitor Brittany's disease and any possible progression, while continuing to have her chest/abdominal/pelvic CT scans every three months in Edmonton instead of every two.
Heartbreakingly, Brittany continues to suffer the chronic debilitating side effects from the Cediranib and was hospitalized twice during the past two months for severe vomiting which we think is caused by a periodic toxic buildup of the drug. Hospitalization is required to re-hydrate her with IV fluids and to help reduce the nausea and vomiting with IV anti nausea and pain meds. In addition to chronic diarrhea, nausea, vomiting, headaches, lack of appetite, mouth sensitivity, fatigue, insomnia, muscle weakness, short term memory loss, and sun senstivity, Brittany has had problems with slow healing of insect bites and any kind of scratch or cut. Despite all of these things combined with her ongoing severe post-op spinal pain, Brittany continues to Live each day with great passion, purpose, determination, and Hope, and with her bright smile and invincible positive spirit. We move forward on this now eleven year journey with deepest gratitude for the 40 months of disease stability that Cediranib has provided for Brittany, and continued Hope that she will continue to have a successful and sustained response to it until a permanent cure can be found.
Thank you for your thoughtful message and good wishes dear Amanda.
Take care everyone, keep in touch with the Board as you are able, know that you are all in my special thoughts, and enjoy a beautiful Indian Summer.
With a very happy and grateful heart, and continued Hope,
Bonni