Brittany on Cediranib trial Phase 1 in Edmonton

[D.ap]

Wonderful , wonderful news Bonni and Brittany and family! May these blessings continue to shine on you and your family.

Much love,

Debbie

[Bonni Hess]

Dear ASPS Community Friends,
I Hope that this finds all of you having enjoyed a very beautiful and happy Mother's Day shared together with your families. My Mother's Day gift came two days early with the VERY GOOD!! scan results that we received on Friday, May 10th from Brittany's 49 month Clinical Trial chest/abdominal/pelvic CT scans that were done in Edmonton on Thursday, May 9th and which thankfully showed continued disease stability with no new tumors . Additionally, Brittany's April 25th full body bone scan which was done at the University of Washington in Seattle showed no bone tumors and no signs of metastatic disease for which we are so deeply grateful. We usually schedule an annual full body bone scan for Brittany just to make sure that nothing is being missed in the other scans, but with all of our trips to Edmonton for the Clinical Trial chest/abdominal/pelvic CT scans, she had not had a full body bone scan for the past three years so the good scan results were a great relief! We continue Brittany's courageous journey to healing with deepest gratitude for the now 49 months of disease stability and dramatic tumor shrinkage/complete disappearance that Cediranb has provided, and great Hope in our hearts that she will have a continued sustained successful response to the drug until a permanent ASPS cure can be found. Brittany heartbreakingly continues to suffer the debilitating negative side effects of Cediranib, but despite all of her suffering, she remains active and maintains her incredible invincible positive attitude and her great zest and passion for Life.
Take care everyone, know that you are all held very close in my heart and most caring thoughts, and please keep in touch with the Board as you are able.
With a happy mother's heart filled with great relief, joy, and continued Hope,
Bonni

[D.ap]

Bonni

The news has to be the alsolute best mothers day present that any mother could dream to be blessed with.

much love

Debbie

[Amanda]

Bonni
That is the best mothers day gift any parent can hope for )
I am so happy for you all!

[Olga]

Bonni, we are very glad to hear that thank you so much for sharing this good news with us.

[Bonni Hess]

Dear ASPS Community Friends,
Yesterday's unseasonably cool and cloudy summer weather in Edmonton was really brightened and our hearts warmed with the VERY GOOD!! scan results which we received from Brittany's Thursday's almost 52 month Cediranib Clinical Trial chest CT and abdominal and pelvic MRI which VERY thankfully showed continued disease stability and no new tumors!! Dr. Sawyer and we were especially relieved by the VERY GOOD!! results since we know that MRI's are more defintive than CT scans and could possibly show a small tumor or some growth that isn't visible on the CT scan which would then inadvertently have taken Brittany off of the Trial. Thankfully, even the more defintive MRI did not show anything new or any growth!! We are deeply grateful to Dr. Sawyer for agreeing to and coordinating our request for Brittany to have abdominal and pelvic MRI's from now on as opposed to abdominal and pelvic CT scans with contrast to help prevent anymore radiation exposure and kidney damaging contrast after all that she has received from countless CT scans with contrast during the past twelve+ years of her courageous ASPS battle. Because of the movement of the lungs she will have to continue to have chest CT's, but at least the radiation to her abdomen and pelvic area will be eliminated. Since Brittany did not have to drink contrast for an abdominal and pelvic CT, she felt MUCH better during our Edmonton stay and was actually hungry and able to eat which is usually not the case. In keeping with our usual monitoring scan regimen, Brittany will have her regularly scheduled brain and spinal MRI in Seattle on August 19th, and Hopefully I will be able to share more continued good news of no new brain or spinal tumors then. In the meantime, please take care everyone, enjoy the rest of the summer, keep in touch with the Board as you are able, and know that my most caring thoughts and very best wishes are with all of you.
With a heart filled with great relief and happiness, special caring thoughts, and continued Hope,
Bonni

[D.ap]

Bonnie and Family
What wonderful news to hear !
Thanks sooo much for sharing.
All our love
Debbie and family

[Amanda]

Wonderful news!!!

[Bonni Hess]

Dear ASPS Community Friends,
Today was a beautiful summer day in Seattle which was made even more beautiful by the VERY GOOD!!! and relieving preliminary scan results which we received from Brittany's today's regularly scheduled brain and spinal MRI's. We are always very nervous about scans never knowing what this unpredictable disease will do, but we were even more so this time since we usually try to schedule Brittany's brain and spinal MRI's every three months knowing how quickly ASPS mets in the brain and spine can develop and grow. However, this time it ended up being four months since her last brain and spinal MRI's due to some schedule conflicts with important family events. Thankfully, the radiation oncologist's review of the scans along with our personal visual review of them with her, showed no visible new mets, but we will have to wait a few days to receive the formal written radiologist report to confirm the preliminary results. We continue to be deeply grateful for the 52 months of sustained disease stability that Cediranib has now provided for Brittany, and to hold VERY tight to Hope that she will continue to have a successful and long term response to her Cediranib treatment until a permanent ASPS treatment and cure can be found. Please take care everyone and keep the Board updated with your own treatment experiences and results as you are able since shared information remains one of our strongest weapons in fighting this very challenging disease. Without the Cediranib information which was so graciously shared on this Board by pioneer Cediranib ASPS patients Paul Mavers and Clare Clarke, it would most likely have been too late to save Brittany's precious young Life by the time that Cediranib became better known to the oncology community.
With a heart filled with much happiness, great relief, special caring thoughts for everyone, and continued Hope,
Bonni

[Bonni Hess]

Dear ASPS Community Friends,
We just received the written radiologist's report by e-mail from Brittany's radiation oncologist thankfully confirming yesterday's preliminary good scan results of no new brain or spinal tumors so her next brain and spinal MRI will be scheduled for early December. Take care everyone and enjoy a beautiful rest of the summer.
With great relief and happiness, and continued Hope,
Bonni

[Amanda]

YAY!!!!

[D.ap]

Bonni and family
What great news. Thanks for the update
Love
Debbie and family

[D.ap]

Bonni and family
Just checking in with you all.
Hope this finds you all having a beautiful summer/fall with continued goods news

Love
Debbie

[Bonni Hess]

Dear Debbie
Thank you for your thoughtful message and special caring. I am sorry that I have been out of touch with the Board recently, but we have been boating with limited computer access. We try to take advantage of the time between Brittany's scans and any docotr appointments she has to Live Life as much as possible within the constraints placed on us by this challenging battle and the knowledge and constant concern about how very unpredictable and insidious ASPS can be. Thankfully, Brittany seems to be doing relatively well with the exception of her chronic spinal pain and negative side effects of the Cediranib. With the pain team uable to provide anymore meds or treatments to help alleviate her severe spinal pain (they are amazed that she is even able to get out of bed each day due to the amount of post-op spinal deficit that she has), Brittany has been receiving hypnotherapy for the past couple of months from a medical hypnotherapist which seems to be very successful in helping her learn relaxation techniques that help her cope with her pain and cancer related issues. She also receives IV re-hydration every two weeks to prevent the severe nausea and vomiting that she was experiencing from dehydration caused by the Cediranib side effects, and this thankfully seems to have been successful in alleviating her needing to be hospitalized every 2-3 months due to the dehydration and sudden onset of uncontrollable vomiting. Brittany's 55 month Clinical Trial chest CT and abdominal/pelvic MRI and results are scheduled for November 7th and 8th in Edmonton. As always, our scanaxiety grows each day as the scan date gets closer, and with any headache or other symptoms Brittany may have, and we become increasingly nervous, but are holding VERY tight to Hope that the scans will show continued stable disease and no new tumors.
I Hope that Josh and your family are doing well, and I too Hope that you are all having a beautiful Indian Summer and Fall. I will be anxiously awaiting your next update on Josh and Hoping for good news of stable disease. Thank you for your active pariticipation on the Board and all of the strengthening support and encouragement that you provide to other ASPS patients and their families. Take care Debbie.
With special caring thoughts, healing wishes for Josh, and continued Hope,
Bonni

[D.ap]

Dear Debbie
Thank you for your thoughtful message and special caring.

I am so glad you all are getting some R&R. That is one thing we can fall out of habit doing as families with this disease.

I am sorry that I have been out of touch with the Board recently, but we have been boating with limited computer access. Good for you all for taking time for yourselves!

We try to take advantage of the time between Brittany's scans and any docotors appointments she has to Live Life as much as possible within the constraints placed on us by this challenging battle and the knowledge and constant concern about how very unpredictable and insidious ASPS can be .Thankfully, Brittany seems to be doing relatively well with the exception of her chronic spinal pain and negative side effects of the Cediranib.
With the pain team unable to provide anymore meds or treatments to help alleviate her severe spinal pain (they are amazed that she is even able to get out of bed each day due to the amount of post-op spinal deficit that she has), Brittany has been receiving hypnotherapy for the past couple of months from a medical hypnotherapist which seems to be very successful in helping her learn relaxation techniques that help her cope with her pain and cancer related issues.
How wonderful to hear of progress with her pain management! I realize the pain of the spine must be so painful. Are there any stretches that can be done at a minimum effort but to create a relief for Brittany ?

She also receives IV re-hydration every two weeks to prevent the severe nausea and vomiting that she was experiencing from dehydration caused by the Cediranib side effects, and this thankfully seems to have been successful in alleviating her needing to be hospitalized every 2-3 months due to the dehydration and sudden onset of uncontrollable vomiting. I am so glad to hear of this working for her. I remember reading on an earlier post how this was a deblitating side effect.Diet wise, is there any thing that increases hydration ? Having played sports for over 30 years, I know gator aide is good. However, doesn't cediranib cause high blood pressure as well? A lot of salt in the gator aide..
Brittany's 55 month Clinical Trial chest CT and abdominal/pelvic MRI and results are scheduled for November 7th and 8th in Edmonton. As always, our scanaxiety grows each day as the scan date gets closer, and with any headache or other symptoms Brittany may have, and we become increasingly nervous, but are holding VERY tight to Hope that the scans will show continued stable disease and no new tumors.
How dare this disease give Brittany pain and uncertitainy at the same time.
I Hope that Josh and your family are doing well, and I too Hope that you are all having a beautiful Indian Summer and Fall. I will be anxiously awaiting your next update on Josh and Hoping for good news of stable disease. Thank you for your active pariticipation on the Board and all of the strengthening support and encouragement that you provide to other ASPS patients and their families. Take care Debbie.
With special caring thoughts, healing wishes for Josh, and continued Hope,
We will be posting in December.
Have a most blessed and much deserved rejuvenating vacation! Safe travels

Love,
Debbie