Brittany on Cediranib trial Phase 1 in Edmonton

[Bonni Hess]

Dear ASPS Community Friends,
I am sorry to have been out of touch for so long, but I underwent cataract and retinal surgeries in September and have had some frustrating debilitating post op issues of still blurred vision that has prevented me from writing.
On a MUCH more positive note, Brittany's recent cardiac echo cardiogram and her five month brain and spinal MRI's VERY thankfully showed no tumors which was an immense relief since Brittany has been experiencing some concerning respiratory and neurological symptoms. Although we are of course deeply grateful and relieved that Brittany's symptoms are not caused by heart, spinal, or brain tumors, the spinal MRI showed that her severe post-op cervical and thoracic spinal deformity is putting increased pressure on her spine and esophagus causing the right side extremity numbness and respiratory symptoms. We are currently aggressively exploring possible treatment options to relieve and resolve the increased spinal pressure and associated symptoms. In the meantime, Brittany is scheduled for her four month chest, abdominal, and pelvic Clinical Trial scans in Edmonton on November 8th, and we are, as always, holding VERY tight to Hope for GOOD NEWS scan results which show no new tumors and continued stable disease. I will update the November scan results as soon as possible. Take care everyone and keep the Board updated as you are able.
With deepest gratitude for Brittany's now nine and a half years of sustained disease stability, and with continued Hope,
Bonni

[Olga]

Bonni - I am sorry to hear re. post-op complications for both of you and Brittany. I wish you both find a good solution that would lead to a resolution of these problems soon.

[Bonni Hess]

Thank you for your kind words and special caring dear Olga. Many people don't know/understand that fighting this insidious disease is truly only part of the battle with the aftermath of the surgeries and treatments also taking a huge physical and emotional toll . With special caring thoughts, healing wishes, and continued Hope, Bonni

[D.ap]

Bonni and Brittany

Love and prayers to you both.
Love

[Bonni Hess]

Dear ASPS Community Friends, As our American Thanksgiving approaches, we are especially thankful for having received VERY GOOD chest/abdominal/pelvic scan results from Brittany's November 8th four month Clinical Trial scans during our last week's visit to cold and snowy Edmonton. VERY thankfully and relievingly the scans showed continued stable disease and no new tumors after Brittany's now nine and a half years of Cediranib treatment under the very caring and expert supervision of Dr. Sawyer who is extremely knowledgeable about TKI treatments. Because of Brittany's thus far continued VERY successful Cediranib treatment results and long term sustained disease stability, we can now move forward into the upcoming Holiday season and the beginning of a new year with happy hearts and strengthened Hope. Take care everyone and have a wonderful Holiday season shared together with dear family and friends, and a happy and Hope filled beginning to 2019. With a heart filled with deepest gratitude, special caring thoughts, healing wishes, and continued Hope, Bonni

[D.ap]

Bonni and Jim and Brittany and certainly all,
So incredibly happy for the news!
You all as well have a beutiful and safe thanksgiving and holiday to follow .
Love
The Pearson’s : )

[Olga]

Bonni - thank you for posting this, happy for Brittany and all of you. Have you guys asked Dr. Sawyer if he had another patient staying for so long or close on any TKI treatment drug?

[Bonni Hess]

Dear ASPS Community Friends, On Wednesday, Novenber 28th, Brittany experienced a sudden very frightening grand mal type seizure for which she was examined and treated at the ER. A brain CT and brain MRI were done and VERY thankfully no bleeding in the brain nor any brain mets were found. After receiving IV saline and pain meds, she was discharged from the ER with a prescription for the anti seizure drug Keppra, but no diagnosis for the cause of the seizure. We are obviously very concerned about what caused the seizure, have conferred with Dr. Sawyer, and are meeting with Brittany's SCCA oncologist on Thursday to try to determine the cause and Hopefully find a resolution for the underlying cause. Things that we will be exploring include possible Cediranib toxicity after 9 and a half years of Cediranib treatment, opioid neurotoxicity from Brittany's high dose long term pain medication use, or spinal compression from her post op degenerative cervical/thoracic spinal condition which has been causing increased neurological symptoms of right extremity numbness. Brittany had 2 separate seizures 15 years ago when she was experiencing severe brain swelling from brain mets and post Gamma Knife brain met treatment, but has not had any other seizures since that time until Wednesday's episode. With Brittany's usual undeterred invincible attitude and zest for Living, she went skiing on Saturday!! I will keep this Forum updated as I am able when there is more information to share. In the meantime, I Hope thar you are all enjoying a beautiful Holiday season shared together with family and friends, and that the rapidly approaching New Year will bring renewed good health and an effective treatment and cure for all of our ASPS Community patients. With deep concern for Brittany's seizure, and continued Hope, Bonni

[D.ap]

Bonni and family

I’m so sorry to hear of Brittany’s seizure .
My hope and prayers for all finding a cause to Brittany’s seizures .
Love to all of you .

[Bonni Hess]

Dear ASPS Community Friends, In the midst of this long, seemingly endless, very snowy and cold Winter where we Live in the Pacific Northwest and Montana, our spirits have been brightened and our hearts warmed by the VERY GOOD NEWS!! results from Brittany's February 28th four month Cediranib Clinical Trial chest/abdominal/pelvic scans which VERY thankfully showed continued sustained disease stability. Unfortunately, I have the stomach flu and was unable to travel to be there in Edmonton for Brittany's scans and results appointment, but my husband Jim was there with Brittany to receive the VERY good and relieving scan results from wonderful Dr. Sawyer who had dedicatingly personally viewed and thoroughly closely reviewed the scans with the radiologist. We continue to have unresolved concerns about Brittany's neurological symptoms, including her increasing debilitating short term memory loss., which Brittany and Jim addressed and discussed with Dr. Sawyer. Because Brittany is a pioneer in now having received almost 10 years of Cediranib treatment, it is unknown if Cediranib may be responsible for her neurological symptoms, but Dr. Sawyer thinks that the Cediranib may have at least partially contributed to the symptoms, along with Brittany's previous Gamma Knife treatments and brain rumor resections. Brittany underwent an EEG scan in Seattle ion February 14th to map her brain wave activity to try to determine the possible cause of her frightening November 28th Grand Mal type seizure and her other concerning neurological symptoms, and we will receive the results of the EEG in a meeting with the Seattle neurologist on March 13th. Hopefully we will get some positive answers and an easily treatable diagnosis at that time, as well as VERY GOOD scan results from Brittany's five month brain and spine MRI's and scan results appointments which are scheduled earlier that same day. In the meantime, we are celebrating and finding great joy in Brittany's VERY GOOD chest/abdominal/pelvic scan results in Edmonton, and looking forward to the arrival of a beautiful Spring with much warmer weather! Take care everyone, know that you are all held very close in my heart and soecial thoughts.l, and keep in touch as you are able. With great relief, happiness, and deepest gratitude for Brittany's continued sustained long term disease stability, and with continued Hope, Bonni

[Olga]

Congratulations! So happy to hear this news. Bonni - you guys as always so proactive, I was just going to suggest that the brain activity scan should be done and see - it is already done. They take their time too - from Feb.14 scan to meeting with the neurologist on March 13th...what to say, Brittany is without the doubts one of the longest and mist successful Cediranib treatment cases so it is really unique and new and mostly unknown.

[D.ap]

Bonni and family
Great news all the way around !
Hoping you all get answers with the brain study .
Love

[Bonni Hess]

Thank you dear Olga and Debbie for your continued special caring, strengthening support, and shared happiness for Brittany's good scan results. Yes, it is very frustrating Olga that we have not yet received Brittany's EEG results since we always request/insist to receive all of her orher scan results the same day or the next, but her new somewhat nonchalant/ineffectual neurologist at the University of Washington didn't seem to feel any urgency for us to review the results with her, and the results are supposed to be available on Brittany's personal medical patient information site, which thus far they have not been shown so Brittany is calling today to try to resolve that problem. Regardless, we will be meeting with the neurologist in 9 days, so we Hopefully will be able to get some information about Brittany's neurological status then, but Dr. Sawyer told Brittany and Jim that unfortunately the problems may be irreversible. This is the harsh and heartbreaking reality of this disease that although the treatments may be necessary to try to save the patient's Life, the side effects and aftermath of the treatments may cause very debilitating long term suffering and other health problems. It is truly a Catch 22 damned if you do and damned if you don't siuation. Heart to heart with special caring thoughts and continued Hope, Bonni

[Bonni Hess]

Dear ASPS Community Friends, I am very happy to report that Brittany's yesterday's 5 month brain and spine MRI's at the University of Washington in Seattle VERY gratefully and relievingly showed no new brain or spine mets and continued disease stability in those areas. Based on these continued very good scan results, and barring any new concerns or symptoms, Brittany's next brain and spine MRI's will now be scheduled in six months. We also met with the neurologist to discuss the results of Brittany's February 14th brain EEG. While we are very relieved that the EEG didn't show any abnormal brain wave activity, we are disappointed that the neurologist is unable to provide any specific information about the possible cause of Brittany's concerning Grand Mal seizure in November, her increasing short term memory problems, and her other neurological symptoms of extremity weakness and numbness. The neurologist suspects that these problems may all be the result of a combination of factors including scar tissue from Brittany's previous brain tumor resections, her previous Gamma Knife procedures, her major laminectomy, side effects of the numerous prescription medications that she takes, and the unknown side effects/damage of Brittany's almost ten years of Cediranib use. As with so many things that we have experienced on this long 17 and a half year ASPS journey, there remain many unknowns, no definitive answers, and no treatment resolutions for the neurological symptoms and problems. Despite our frustration with the lack of answers for Brittany's neurological problems, we move forward with great joy and deepest gratitude in our hearts for the sustained long term disease stability that Cediranib has provided, and a determination to try to find a definitive cause and viable treatment for Brittany's neurological issues. Wishing you all a beautiful Springtime that blooms with healing miracles and happiness for everyone in our ASPS Community.
With a grateful heart, special caring thoughts, and continued Hope, Bonni

[D.ap]

Bonni and family

I’m sorry for no answers to Brittany’s neurological problems but so glad that the scans are showing no new results and stability .
Love to you and family,