Brittany on Cediranib trial Phase 1 in Edmonton

[Jorge]

Such a great news!
I'm so glad for Brittany and you. Looking forward to the good news

[Vega343]

Great news Bonnie! Your story inspires my family!
Continue to take care and enjoy summer!
Mj

[Kathy]

So happy to read this and so thankful for you and the love and support you give all of us!

[Bonni Hess]

Dear ASPS Community Friends,
As always, I am so deeply grateful for all of your special messages of shared caring, kindness, and support, and I am once again VERY happy to be able to share GOOD NEWS!! from Brittany's yesterday's four and a half month brain and spinal MRI's at the University of Washington in Seattle which VERY thankfully showed no new brain or spinal mets in our preliminary review of the scans with the radiation oncologist . We had increased scanxiety with these scans because Brittany has heartbreakingly been experiencing concerning severe headaches, nausea, and vomiting which in the past have been symptomatic of brain mets, but since the preliminary review of the scans appeared to be VERY thankfully clear and showed no brain mets, it is possible that Brittany's headaches are the result of post craniotomy issues which are apparently fairly common about ten years following craniotomies, and unfortunately there are no currently available treatment resolutions for the post craniotomy headache pain . As with her continued debilitating spinal pain, we will continue to aggressively search for some effective pain treatment options to help alleviate and resolve her chronic post op pain and suffering. In the meantime, she and her husband happily celebrated their Happy 1st Wedding Anniversary on August 15th with a special hot air balloon ride, and Brittany continues to Live Life with deep appreciation, great passion, and her usual invincible attitude and determination Her next four month Cediranib Clinical Trial chest/abdominal/pelvic scans and results appointments are scheduled for October 13th and 14th in Edmonton, and we are holding VERY tight to Hope that the scan results will show continued sustained disease stability with no new mets. Take care dear friends, know that you are all held very close in my heart and my most caring thoughts always, have a beautiful rest of the Summer and beginning of Fall, and keep in touch with the Board as you are able.
Celebrating Brittany's VERY GOOD scan results with greatest relief, immense joy, and continued Hope,
Bonni

[Jorge]

Bonnie,
Thanks for sharing the great news!

It's very saddened to know Brittany's still experience severe headaches, nausea, vomiting from the craniotomy. What does the neurologist say? Does sports help? Does Brittany work out a lot?
For the spinal pain, do you try some kind of physiotherapy? Or acupuncture therapy?

[Bonni Hess]

Dear Jorge,
Thank you for your very kind and caring post. In response to your question about what the neurologist says regarding Brittany's post craniotomy headaches, the doctors have heartbreakingly not been able to offer any resolutions or treatment options because they say that post craniotomy headaches are some of the most challenging and impossible to treat and resolve . Because of her severe post spinal laminectomy pain, Brittany is unfortunately no longer able to participate in most sports, although she did happily resume skiing this past Winter . Prior to ASPS and her 23 surgeries/ablations/radiosurgeries, Brittany was a very active and talented soccer player, gymnast, cheerleader, and skiier. Her physical therapists have told her that there is no reason for her to take any more physical therapy because they can't do any more for her spinal pain since her spinal met resection removed 1/3 of each of seven cervical and thoracic vertebrae resulting in a severe curvature of the upper spine since she has no spinal structure to support her neck. She does have a spinal brace which provides some relief but it is heavy, hot, and burdensome for her to wear for extended amounts of time. We have explored and tried several spinal pain treatment options including Botox, acupuncture, and most recently Ketamine infusions, but very disappointingly the Botox was a complete failure and the acupuncture and Ketamine only provided relatively short term pain relief. Brittany tries to be as active as possible taking frequent daily outdoor walks and doing some hiking since it is important for her to do weight bearing exercises to prevent muscle loss that is common with Cediranib, and she also works out at an exercise gym when she is able. It is a very difficult situation but we continue to search and Hope for an effective pain treatment and resolution for both the spinal and craniotomy pain. In the meantime, we are deeply grateful for Brittany's continued disease stability and the opportunity for her to Live each day with her great passion for Living and her deep appreciation for the gift of Life that Cediranib has provided for her.
Take care dear Jorge.
With special hugs, caring thoughts, healing wishes, love, and continued Hope,
Bonni

[D.ap]

Bonni
I some how missed your August 30 post
However so good to hear the good news
Hugs to all!!

[Bonni Hess]

Dear ASPS Community Friends,
With my upcoming milestone decade birthday this coming week, I received the VERY best early birthday gift with the VERY good scan results that we received in Edmonton on Friday from Brittany's Thursday's four month Clinical Trial chest CT and abdominal/pelvic MRI scans which VERY thankfully all showed continued disease stability and no new tumors!! Despite the unseasonal early heavy Edmonton snowfall, cold temperatures, and gray skies, our hearts were warmed and our spirits brightened with this wonderful and VERY encouraging news. Brittany thankfully seems to be feeling relatively good and the most severe and debilitating side effects of her Cediranib treatment seem to be lessening and becoming much more tolerable. As grateful as we are that Brittany's heartbreaking suffering from the severe side effects has been reduced, we are of course somewhat concerned that the lessening side effects may indicate that her body is becoming resistant to the Cediranib and that she may subsequently develop disease progression. However, since she is a pioneer in the long term use of, and sustained response to Cediranib, there is no data available to determine what the implications and outcome of her reduced side effects may be, so all we can do at this time is just continue to be vigilant with her monitoring scans and with observing any symptomatic indications of disease progression, so her next four month brain and spinal MRI scans will be in January and her four month Clinical Trial chest/abdominal/pelvic scans will be in February. In the meantime, we continue on this long challenging journey with strengthened Hope and deepest gratitude for the now seven and a half years of disease stability that Cediranib has provided for Brittany, and with greatest appreciation and immense gratitude for the ongoing dedicated work and special care and caring of Dr. Sawyer and the Phase One Clinical Trial nurses at Cross Cancer Institute.
Take care everyone, have a beautiful Fall, and keep in touch with the Board as you are able.
Celebrating Life and Brittany's VERY good scan results with a happy heart filled with greatest relief and joy, healing wishes for all of our ASPS Community patients, and continued Hope,
Bonni

[danieldew7]

Congratz Bonni! Glad to hear this good news

[D.ap]

Bonni and family
Great news ! Looking forward to continued good scans

Love
Debbie and family

[Olga]

Bonni - we are happy to hear the results. As good as it can be.
It still bothers me that it is in a setting of the personal extension of the phase 1 trial so the efficacy is not tested or reported by its rules, only the tolerable dose. Did you have chance to talk to Dr.Sawyer re. making the results public by some means - publishing an article re. remarkable single case or submitting an article to CTOS or some other relevant conference. Was her case officially discussed at the ASPS meeting you attended recently? Some effort needs to be done to make the info re. her amazing result public/official. Are people from Astra Zeneca getting this info at all?You have met Pf.Judson - was he aware about this case of the complete and long term sustained response to Cediranib?
The articles re. single cases are rare but given it is ASPS where the uniform series are rare too - may be it has its significance.

[Bonni Hess]

Thank you dear Daniel, Debbie, and Olga for your very kind and supportive responses.
In regard to your excellent questions Olga, we too have wondered why Brittany's thus far very significant and successful Cediranib response has not been more closely studied and reported, especially by Astra Zeneca.
Both Brittany and I addressed and presented information about her long term sustained Cediranib response at the ASPS and Sarcoma Workshops in Miami, and although Brittany and her currently unprecedented very successful and sustained response were already well known to some of the doctors including Dr. John Goldberg (who called Brittany a "Super Star" when she was on the GVAX Immunotherapy Vaccine Clinical Trial) and Dr. Breelyn Wilky (who called Brittany "a legend"), disappointingly and perplexingly no indication was given that a possible reason for her long term response is being reviewed/would be reviewed and studied. The speaker schedule at the ASPS Workshop was so full that unfortunately there was only limited time for audience discussion and comments, but we did make Professor Judson aware of Brittany's seemingly rare significant sustained Cediranib response, but other than expressing gratitude for her thus far successful treatment, he did not seem to be interested in pursuing it any further. Dr. Goldberg used Brittany's case and tumor biopsy slides as examples during his discussion of immunotherapy treatment, even though she ultimately had a failed response to the GVAX Immunotherapy drug. When we raised the question about the possible effect of Brittany's previous GVAX Immunotherapy treatment and her ARQ-197 C-met treatment having had a possible positive effect/contribution to her thus far successful Cediranib response, the doctors and researchers seemed to agree that it is a possibility, and that it may support the rationale for pursuing the use of combination drug therapies. However, ultimately the consensus seems to be that each patient may respond differently to the same drug/treatment, which we know very well from our anecdotal observations on this long difficult 15+ year ASPS journey.
At our next appointment for Brittany's four month scans and results with Dr. Sawyer in February, we will address the questions that you have raised.
In the meantime, Hopefully those ASPS patients currently participating in the NIH Cediranib Trial will share their information and treatment results, positive or negative and successful or failed, on this Board so that we can all continue to learn from each other.
With deepest gratitude, special caring thoughts, healing wishes, and continued Hope,
Bonni

[Bonni Hess]

Dear ASPS Community Friends,
We were recently contacted by the Supervising Nurse in charge of Phase One Clinical Trials at Cross Cancer Institute in Edmonton that Astra Zeneca would like to move Brittany to a six month chest/abdominal/pelvic scan and Clinical check-up schedule based on Brittany's thus far long term sustained disease stability since beginning the Cediranib Clinical Trial seven and a half years ago. I am personally somewhat reluctant and concerned about extending Brittany's monitoring scans by an additional two months between scans knowing how unpredictable this insidious disease can be, and based on the perplexing lessening of Brittany's Cediranib side effects which I fear could possibly indicate that her body may be developing a resistance to the drug, but both Brittany and my husband are agreeable to the scan schedule change so I have concurred with them and Brittany's next Clinical Trial chest/abdominal/pelvic scans will now be in April 2017. However, we will maintain her four month brain and spinal MRI scan schedule at the University of Washington in Seattle, with her next scans there being in December. Thus if any disease progression occurs in the brain or spine, we will at least know prior to the new six month chest/abdominal/pelvic scan schedule that the Cediranib may no longer be working to stabilize progression of the disease. We are holding VERY tight to Hope that Brittany will continue to have a very successful response to the Cediranib, but feel the need to be very vigilant in monitoring the situation given the unpredictability of this challenging disease and the fact that Brittany is a pioneer in the long term use of Cediranib.
Take care everyone and keep in touch with the Board as you are able.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[D.ap]

Hello Bonni

I understand your reluctance to not have 4 month reports verses moving to 6 month reports . Hugs coming you way.
I feel in light of the reduced exposure from spacing CTs a couple of months further out, this is maybe a good idea.

Love
Debbie

[Bonni Hess]

Hello again everyone,
When my husband addressed Olga's question about why Brittany's relatively unique, remarkable, and sustained long term response to Cediranib has not been studied by Astra Zeneca, officially discussed, and/or made public or official through a published article, The Phase One Clinical Trial Supervising Nurse told him that Brittany is considered a "one off patient" or an "extreme outlyer" whose very successful and long term sustained Cediranib response is basically an anomaly which apparently does not justify any study or evaluation to try to determine the reason that she had such a significant response. This is of course very frustrating since many other patients could possibly benefit if the reason could be determined (such as if Cediranib may have combined with Brittany's previous systemic treatments of the GVAX Immunotherapy Vaccine or ARQ-197 C-Met Inhibitor or if Brittany initially starting on a high 45 mg. daily dosage may have had an impact), but I am sure that since ASPS is such an extremely rare disease, there is sadly no interest in investing time or money in studying one singular patient's successful response.
With frustration, and continued Hope,
Bonni