Brittany on Cediranib trial Phase 1 in Edmonton

[Bonni Hess]

Dear ASPS Community Friends,
With the USA 4th of July approaching, we have much to celebrate with the VERY GOOD!! results that we received from Brittany's four month Clinical Trial chest CT and abdominal/pelvic MRI's in Edmonton on Friday, June 23rd which VERY thankfully and relievingly showed continued stable disease and no new tumors . Our always present scanxiety had been greatly increased by Brittany having been emergency hospitalized for three days in Washington two weeks ago for severe uncontrollable vomiting. The hospital CT scans and lab work seemed to indicate that Brittany's vomiting was unrelated to having any new tumors, and the diagnosis of an Ecoli infection was made from lab cultures. She is being treated with very strong antibiotics but concerningly continues to have some symptoms, so we Hope that the antibiotic will resolve the infection soon. It is always difficult to know if any of Brittany's symptoms are caused by her ASPS, her now 8+ years of Cediranib treatment, or just "normal" non ASPS or treatment related causes, and the ongoing roller coaster of fear and worry is ever present . We just returned from Edmonton, so I will address the questions raised about Cediranib treatment by both Melanie and Rachel in another post as soon as I have time, but for now I just wanted to quickly update Brittany's scan results. Please take care everyone, have a beautiful summer, and know that my most positive thoughts, deepest caring, and healing wishes are with all of you as we continue this difficult shared ASPS journey together.
Celebrating Brittany's VERY good, relieving, and encouraging scan results with greatest joy and continued Hope,
Bonni

[Bonni Hess]

Dear Melanie,
Regarding your question about "if any of Brittany's lung mets disappeared on the drug or if they shrank / stayed the same?", for the first couple of months of Brittany's Cediranib treatment in 2009, Brittany had stability of her innumerous and widely disseminated mets in her lungs, pancreas, duodenum, and small bowel intussusception, with very little if any shrinkage, but once she had her small non-responding superficial abdominal met surgically removed at Dr. Sawyer's expert recommendation because he said it wasn't being a "team player", she experienced dramatic shrinkage and disappearance of all of her mets. At this point eight years and two months since she began her Cediranib Clinical Trial, she VERY thankfully no longer has any scan visible mets. However, although Dr. Sawyer thinks that she may currrently be macroscopically tumor free, he thinks that she is probably unfortunately not microscopically tumor free which is why she continues and will continue to take the Cediranib as long as she has disease stability and no new tumors, or until a permanent ASPS cure can be/is found. Brittany began on a too toxic 45 mg. daily Cediranib dosage which was reduced within the first couple of months, and she now remains on a more tolerable 30 mg. per day dosage. It is my understanding that your daughter is on a 20 mg. per day dosage probably because of her smaller size and body weight. I Hope that dear Ellie will have a VERY successful and sustained long term response to her Cediranib treatment, and that she continues to tolerate the usually harsh side effects of the drug well. Unfortunately, once the Cediranib treatment is started, it will probably need to be continued as long as it is showing success due to the documented risk of possible rebound and rapid disease progression if the drug is discontinued. Complete regular and vigilant scans will remain essential in monitoring the status of Ellie's disease so even if she develops disease stability and possibly NED status, it is critically important to NOT become complacent. Please take care dear Melanie and keep the Board updated with the results of dear Ellie's Cediranib treatment and experience as you are able.
Heart to heart with deepest caring, healing wishes, and continued Hope,
Bonni

[Arch]

Hi Bonni,
I'm so glad to read your update. Either cediranib alone worked well for her or cediranib after the vaccine trial made a difference.

Sending you, Brittany and your family best wishes!

Arch

[jcs2007]

I just wanted say thanks for sharing your positive news and I continue to pray for continued stability until a cure can be found. Take care!

[D.ap]

Hello Bonni and family

I'm sorry that I missed Mondays post as it is truly a reason to celebrate! Today however I want to join with you all in the joy of scan results and let you know how incredibly happy the Pearson's are to hear of Brittany's results.

Much love
Debbei

[Bonni Hess]

Dear Arch, Cindy, and Debbie,
A very special thank you to each of you for reaching out so thoughtfully and graciously to share the great joy of Brittany's most recent very good scan results.
It is so good to hear from you dear Arch and so kind of you to continue to follow and provide support for our ASPS Community patients and families despite your beloved Sree's devastating loss to this insidious disease five years ago. I so deeply wish that dear Sree could have also had a successful response to his Cediranib treatment, and we too continue to wonder if Brittany's previous GVAX Immunotherapy treatment may have combined with the Cediranib to provide her with her apparently unique thus far long term, sustained, very successful, and now 8+ year response to the Cediranib. As with everything with this extremely rare and poorly understood disease, there remain more questions than answers and our determined and relentless search for those answers continues. I Hope that you and your dear family are doing as well as possible, although having lost our beloved oldest son 12 years ago in a tragic vehicle accident, I know FAR too well how profoundly difficult and endless the grief journey is. Please know that you, Sree, and your family are, and will always remain, a very special part of our ASPS Community Family, and you all hold a very special part in my heart and my continued most caring thoughts.
My most caring thoughts are with you also dear Cindy and Debbie as you continue on our shared together ASPS battle with dear Sam's and Josh's ASPS challenges. I am holding very tight to Hope that the promising new PDL-1 Checkpoint Inhibitor treatments that both Sam and Josh are receiving will provide long term sustained disease stability and significant tumor shrinkage and disappearance for both of them. With all of the new research and treatment developments there is increasing reason for Hope that someday there WILL be an effective permanent treatment and cure for this insidious disease which has turned all of our Lives upside down and created so much suffering, pain, loss, and sorrow for all of us in our ASPS Community Family.
Heart to heart with deepest gratitude to each of you, special caring thoughts, and continued Hope,
Bonni

[Disco76lover]

Dear Bonni thank you so much for your response re Brittany's cediranib experience and for your caring thoughts. I hope Brittany is feeling much better now and you continue to get positive results with the cediranib. Ellie has been on this drug nearly three months and a ct scan is to be held beginning of August. She is having hardly any side effects except from loose bowels which are manageable without meds. Scanxiety is fast approaching but I will keep you updated as to how things go with the results. Take care and positive thoughts and best wishes to all members. X

[Bonni Hess]

Dear ASPS Community Friends, We begin this new month of October and the Fall season with VERY happy and grateful hearts having received VERY GOOD!! , relieving, and encouraging scan results in Edmonton on Friday from Brittany's Thursday's Clinical Trial chest/abdominal/pelvic scans which VERY thankfully showed continued disease stability and no new tumors since Brittany began the Cediranib Trial 8 years and 5 months ago. We were having extra scanxiety prior to the scans because Brittany has been experiencing some concerning increased headaches, abdominal pain, and other symptoms, but based on the positive scan results, we are Hoping that her symptoms are of a benign nature unrelated to her ASPS and perhaps just low thyroid level related or caused by Cediranib side effects. Brittany is scheduled for her five month brain and spinal MRI in Seattle on November 1st so we are obviously holding VERY tight to Hope that those scans will also show continued sustained disease stability and no new tumors. In the meantime, we move forward on this roller coaster journey always aware that Brittany could heartbreakingly develop resistance to the Cediranib and disease progression at any time, but EVER grateful for the 8 years and 5 months disease stability that it has provided thus far, and VERY Hopeful that Brittany will continue to have a VERY successful and long term response to it. With a happy heart filled with great joy and relief, special caring thoughts for all of our ASPS Community members, and continued Hope, Bonni

[Johannes]

Thanks for the update, Bonni, this is just wonderful.

I very much hope that Brittany will feel better soon, or that you will at least find out what is causing her headaches, abdominal pain, etc.

With my very best wishes,
Johannes

[Bonni Hess]

Dear Johannes, Thank you for sharing the special joy of Brittany's this week's continued VERY good scan results with your kind and thoughtful words as I too share the great joy and strengthened Hope of dear Elisa's continuing VERY good scan results and apparent successful response to her immunotherapy checkpoint inhibitor systemic treatment combined with radiotherapy. It is SO encouraging that some of these new drugs are showing so much promise and success in stabilizing progression of this insidious and very challenging disease which our dear Brittany, your dear Elisa, and all of our ASPS Community patients have fought and continue to fight SO courageously. My shared great joy, deepest caring, most positive thoughts, healing wishes, and continued Hope are with you and dear Elisa, Bonni

[Bonni Hess]

Dear ASPS Community Friends,
As our American Thanksgiving approaches during this month of November, we have much to be thankful for having once again received VERY GOOD!! scan results from our dear Brittany's yesterday's 5 month brain and spinal MRI scans at the University of Washington in Seattle which VERY thankfully showed continued disease stability and no new brain or spinal mets With Brittany's now 8 and a half years of disease stability since beginning her Cediranib Clinical Trial in April 2009, her long time radiation oncologist Dr. Jason Rockhill continues to strongly encourage us to lengthen the time between her brain and spinal scans, so following yesterday's very good and encouraging scan results we have agreed to schedule her brain and spinal scans once every six months, although I must admit I personally have some trepidation doing so knowing how unpredictable this insidious disease can be , and how quickly ASPS brain mets can grow . However, since we will remain on the every four month chest/abdominal/pelvic Clinical Trial scan schedule in Edmonton, we feel that if the disease does heartbreakingly start to progress, we will be aware of progression through those scans and then will of course immediately schedule an earlier brain and spinal MRI to determine if there is any progression in those areas. As always, we don't want to have to wait until any new mets may become symptomatic, so we will continue to be vigilant with the scans, and will NEVER become nonchalant based on long term continued disease stability knowing FAR too well that Brittany could develop resistance to the Cediranib at any time and disease progression. Brittany's four month chest/abdominal/pelvic scans are scheduled for the end of January and I will, as always, update this Board when we receive the scan results which we are holding VERY tight to Hope will show continued disease stability with no new tumors. In the meantime, my very best wishes are with all of our ASPS Community Family members for a most beautiful and bountifully blessed Holiday season and a very happy and peace filled New Year that brings the Hope of renewed good health and the miracle of healing for everyone.
With a happy heart filled with deepest gratitude, immense relief, great joy, special caring thoughts, and continued Hope,
Bonni

[D.ap]

Bonni and family
As always sharing with in your wonderful news of no new mets and stability .
Love
The Pearsons .

[Ivan]

Congratulations on the continued miracle response!

[Bonni Hess]

Thank you for sharing the great joy of Brittany's thus far successful Cediranib response and continued disease stability with your kind words in the midst of your own recently diagnosed new mets and the new challenges which you are facing dear Ivan. I Hope that you will find strengthened Hope from Brittany's treatment success which occurred following her very aggressive disease progression and development/diagnosis of innumerous widely disseminated mets including a Life threatening unresectable met in the head of her pancreas, all of which are VERY thankfully no longer scan visible. Stay strong, hold VERY tight to Hope, maintain your incredible positive invincible spirit, and keep being the courageous warrior that you have been throughout your determined 14 year battle which we have shared together with you and your dear mom from the beginning. Heart to heart with deepest caring, positive thoughts, healing wishes, love, and continued Hope, Bonni

[Bonni Hess]

Dear ASPS Community Friends, Despite the very cold Wintertime temperatures in very snowy Edmonton, our hearts and spirits were warmed by the VERY GOOD!! chest CT and abdominal/pelvic MRI scan results that we received on Friday at Cross Cancer Institute from Brittany's Thursday's 4 month Clinical Trial scans . VERY relievingly and thankfully the scans showed continued sustained disease stability and no new tumors after 8 years and 9 months of Cediranib treatment. As per our request, Dr. Sawyer kindly made arrangements for us to all personally look at and review the scans together with the radiologist, as well as to compare them with previous scans from 2015, all of which look completely unchanged We continue to be deeply grateful to Dr. Sawyer for his VERY dedicated care and special caring, and his always VERY interesting and informative sharing of some of his great knowledge and expertise. We now move forward into this New Year 2018 and on our long 16 and a half year ASPS journey with VERY happy hearts, strengthened Hope, and ongoing deepest gratitude for the priceless gift of long term disease stability that Cediranib has provided for Brittany. Despite ongoing Cediranib caused negative and debilitating side effects including increasing fatigue, Brittany continues to Live Life with great passion, purpose, courage, determination, and appreciation, currently healthily strengthening her muscles and oxygenating her lungs while happily snow skiing on a week long celebratory ski trip in Idaho . With a heart filled with great relief and joy, special wishes that this coming year will bring healing treatments and renewed good health for all of our ASPS Community patients, and with continued Hope, Bonni