Brittany on Cediranib trial Phase 1 in Edmonton

[Bonni Hess]

Dear ASPS Community Friends,
Our most precious Valentine's treat came five days late with the thankfully VERY GOOD!! scan results which we received yesterday in Edmonton from Brittany's Thursday's 82 month Cediranib Clinical Trial chest, abdominal, and pelvic scans that are now being done every four months. VERY thankfully, her scans showed continued sustained disease stability and no new tumors so we now move forward on this almost seven year Cediranib journey with ongoing strengthened Hope and great joy in our hearts .
Brittany's wonderful, very caring and supportive, and extremely knowledgeable Clinical Trial oncologist Dr. Sawyer told us that approval for Cediranib as a prescription drug for ovarian? (I think) cancer is being pursued in Europe, so that means that the continued production and availability of Cediranib should now VERY relievingly and gratefully be assured . Also, even if Cediranib is approved for prescription use, Brittany will thankfully be able to continue to receive it from the pharmaceutical company as a Clinical Trial participant as long as she continues to have a successful response to the drug and to participate in the Clinical Trial. This is a huge relief to us because we fear that the drug will be very expensive to purchase for non-Clinical Trial patients, and it could be difficult to obtain Medicare and supplemental insurance coverage for the drug.
Some of Brittany's Cediranib side effects seem to be somewhat dissipating such as her severe mouth sensitivity, but she continues to have headaches, fatigue, and abdominal issues with nausea, vomiting, and chronic diarrhea. However, her severe vomiting episodes requiring emergency hospitalization have thankfully been almost completely alleviated by her preventative bi monthly IV rehydration which I would strongly recommend to anyone on a systemic treatment who is suffering chronic severe nausea and vomiting.
We are very interested and encouraged by all of the new advancements being made in cancer research and treatments including the several new promising immunotherapy PDL and PDL-1 type drugs, and will be closely following them, but we of course will continue with Brittany's Cediranib treatment as long as she continues to have a successful response to it, she is able to tolerate it, and it is available to her. We are deeply grateful beyond words that Cediranib has now provided Brittany with the precious gift of Life and continued Living for the past almost seven years which was being devastatingly threatened in 2009 by her unresectable/untreatable met at the head of her pancreas and her rapidly progressing widely disseminated disease. Brittany is very happily married and continues to try to Live Life to the fullest with great passion, undeterred determination, and her usual invincible positive attitude, most recently returning to actively skiing which she had been unable to do for most of the past 14 and a half years since her ASPS diagnosis due to the immense demands and challenges of her incredibly courageous battle and the physical limitations of her debilitating surgeries and treatment effects.
Truly none of us know what tomorrow will bring, especially with this unpredictable and insidious disease, but for now we move forward on this very long difficult ASPS journey continuing to aggressively research, actively network and communicate with other ASPS patients/family members, share information, and letting the bright light of Hope lead us through each day.
With a very happy heart filled with great relief and joy, special caring thoughts and healing wishes for all of the ASPS Community patients, and continued Hope,
Bonni

[D.ap]

Bonni
Such great news on stability and no new mets
My heart goes out to Brittany and her side effects
What does she take over and beyond IV therapy for nausea ? I know pain levels have been managed by different opioids ?
Are those still being used ?

Hugs and love
Debbie

[MartinBube]

Bonnie

this is excellent news. When I read your post regarding Brittany's situation and continued sustained disease stability it give me hope which is very important in this battle.

I'm very happy for you. Greatest filling is when you come back doing things that you used to do before all this happened. very good that Brittany started skiing again. I love skiing also. I did not go last year but this one I did ski for 2 years

[jenhy168]

That is amazing news to hear, Bonni. <3

[Vega343]

Bonnie,
It's taken me a few days, but I was able to read all of Brittney's cediranib story now. Amazing results she had - and courage and perseverance by all of your family. I do hope for continued success with the trial and reduction/control of her side effects. Thanks for keeping such a great log of her journey for us, as we begin the cediranib trial at NIH it was very useful and inspiring.
Mj

[Bonni Hess]

Dear Debbie, Martin, Jen, and MJ,
A special thank you to all of you for your very kind and caring words. It is my great Hope that the information which I have shared about Brittany's now almost seven year Cediranib Clinical Trial treatment experience and thus far VERY thankfully VERY successful results will be helpful to all of the ASPS Cediranib patients and families, and that it will provide encouragement, inspiration, and Hope for everyone in this very difficult battle with this very challenging disease.
MJ, I Hope too that dear Prairie is continuing to tolerate her Cediranib well with minimal negative side effects, and that her next monitoring scans will show that the drug is working to shrink/destroy her lung and brain mets, and to stabilize the progression of her disease and prevent the development of any more mets anywhere in her body. I will be anxiously awaiting your next update on dear Prairie when your time and the situation allow. Take care and have safe travels when you fly back to NIH again.
Brittany is scheduled for her three month brain and spinal MRI in Seattle this Thursday, March 24th which we are holding VERY tight to Hope will show continued disease stability and no new brain or spinal mets. As always, I will update the Board with her scan results as soon as possible following our Thursday results appointment with the radiation oncologist (we always request that if possible the scan appointment and the results appointment be scheduled on the same day to prevent the immense scanxiety and stress caused by having to wait overnight or longer to receive and review the scan results).
With happy Springtime wishes, special caring thoughts, and continued Hope,
Bonni

[Bonni Hess]

Dear ASPS Community Friends,
With our Web site having been down for several days, I was unable to post the results of Brittany's March 24th three month monitoring brain and spinal MRI's at the University of Washington, but now that the Web site is functional again (THANK YOU for all that you did to make that possible dear Ivan, Yossi, and Olga!!!) it is with great joy and a deeply grateful heart that I am sharing the VERY GOOD!! scan results which VERY thankfully showed continued brain and spine disease stability with no brain nor spinal mets!! The radiologist oncologist was so pleased and impressed with how good Brittany looks, her ability to now be able to participate in skiing again, and the excellent and VERY encouraging scan results that she has recommended that Brittany now move to a four month brain and spinal MRI schedule instead of every three months, which Brittany happily agreed to . Knowing FAR too well the unpredictability of this insidious disease and that ASPS brain mets can and do grow much more rapidly than mets in other parts of the body, I am personally a bit apprehensive about, and resistant to, waiting four months between the the brain and spinal scans. However the radiation oncologist feels that this is an appropriate scan schedule for Brittany now with her having had seven years of sustained disease stability with no new mets anywhere in her body, and we also have the back up of Brittany having her Clinical Trial chest/abdominal/pelvic scans every four months in Edmonton on an alternate months schedule which should alert us to any disease progression if it heartbreakingly occurs, and we could then schedule a brain and spinal MRI immediately to quickly assess the situation. In the meantime, we joyfully celebrated Brittany's HAPPY 34th BIRTHDAY!! yesterday which is truly a great victory with her having been diagnosed 14 and a half years ago at age 19, and given 6 months to Live by the extremely blunt, unprofessional, and uncompassionate second opinion oncologist at MD Anderson!! Brittany continues her incredible Life's journey and her very challenging ASPS battle with immense courage, determination, an invincible positive attitude, and continued Hope as she continues to Live Life to the fullest within the limitations of her severe chronic post-op spinal pain and the now somewhat lessening harsh debilitating side effects of the Cediranib. Please take care everyone, have a beautiful Spring bright with Hope , and keep the Board updated as you are able.
With a heartful of special happiness, much relief, special caring thoughts and healing wishes for everyone, and strengthened Hope,
Bonni

[D.ap]

Bonni, Brittany and family

Such excellent news to hear!! Sharing in your joy today and always

All our love to you and your family from ours

Debbie

[Vega343]

So glad to hear!
Md Anderson... Ugh! Same experience here. If I had more time? Energy? I would send them a note.
Awesome news and happy bday to Brittany!
Mj

[Bonni Hess]

Dear ASPS Community Friends,
The start of Summertime shined extra bright for us with the VERY good and relieving seven years and two months Cediranib Trial chest/abdominal/ pelvic scan results that we received in Edmonton yesterday!! . Since Brittany's scans are now only being done every four months coupled with knowing how insidious and unpredictable this disease can be, and given Brittany's reduced Cediranib side effects, our scanxiety was increased, so we were especially relieved and happy to hear that the pelvic/abdominal MRI VERY thankfully showed continued stable disease with no new mets, and that the chest CT also appeared to be stable to Dr. Sawyer's very knowledgeable associate who personally reviewed it in Dr. Sawyer's absence, but did not yet have a formal radiologist report due to a delaying new computer and scan reading system at Cross Cancer Institute. We will of course be anxiously awaiting the formal lung CT radiologist report to confirm the seemingly good results of the doctor's preliminary review. Unfortunately, Dr. Sawyer was not able to be there to discuss the scan results with us as he was at an out of town meeting, but his associate was very kind, caring, and patient in discussing the scan results with us as well as our concerns about the possible implications of Brittany's decreasing Cediranib side effects. Because Brittany is a pioneer in the sustained long term use of Cediranib it is unknown if her decreasing side effects (greatly reduced mouth sensitivity, lessening chronic diarrhea and vomiting, and fewer headaches) may or may not be indicative of her body developing resistance to the Cediranib or just becoming more tolerant of it. However, our concern about possible developed resistance to the Cediranib is somewhat lessened by Brittany's thus far continued good scan results showing continued sustained disease stability . We will of course continue to closely monitor her symptoms and schedule more frequent scans if necessary, and I will keep the Board updated. In the meantime, we are celebrating Brittany's seven years and two months of sustained disease stability with greatest joy and continued Hope, and continuing to try to Live Life to the fullest within the obvious confines of this long battle with this insidious disease. Take care everyone, keep the Board updated as you are able, and have a beautiful and wonderful Summer.
With a heart filled with great relief and happiness, special caring thoughts for everyone in our ASPS Community, and continued Hope,
Bonni

[Olga]

Awesome news! Let's hope that body's ability to develop resistance/tolerance to Cediranib is more than the sarcoma's cells ability to survive and multiply in cediranib impaired environment, or that sarcoma cells already dead and suffocated by cediranib block.

[Bonni Hess]

Thank you dear Olga for so graciously sharing the great joy of Brittany's good scan results in the midst of your own personal heartache and concerns with Ivan's recent pancreatic lesion diagnosis. Thank you too for your shared Hope that the Cediranib will continue to be effective in stabilizing progression of Brittany's disease despite her lessening side effects and seemingly increased tolerance of the drug. My heart, my most positive thoughts, and my very best wishes are with dear Ivan, you, and your family for a speedy, definitive, and Hopefully benign diagnosis of the pancreatic lesion, and an easy and successful resolution, and if necessary,treatment of it.
Heart to heart with deepest gratitude, special caring thoughts, healing wishes, love, and continued Hope,
Bonni

[D.ap]

Awesome news! Let's hope that body's ability to develop resistance/tolerance to Cediranib is more than the sarcoma's cells ability to survive and multiply in cediranib impaired environment, or that sarcoma cells already dead and suffocated by cediranib block.

Bonni
SOOO HAPPY I just can't stand it!!
And Olga's statement sure sums up my heart felt feeling

Love to you and Brittany and family
Hugs from the Pearson Family today and always

[Bonni Hess]

Thank you so much for your nice message and shared joy which so deeply touches my heart dear Debbie. The special thoughtfulness and kindness of those in our ASPS Community is so humbling and deeply appreciated as we all our immersed in our own individual battles with this insidious disease but yet still manage to reach out to provide support and encouragement to each other through all of the ups and downs of this difficult roller coaster journey. I Hope that your dear Josh is doing well, feeling better, and gaining much needed weight. Take care dear Debbie. With grateful hugs, special caring thoughts, healing wishes, love, and continued Hope, Bonni

[MartinBube]

excellent news Bonnie. I'm very happy that the results are good and that Brittany keeps the disease stability for such a long time.

You and Brittany and many others here in this forum are enormous support to all of us that have just recently begun this battle. lets all keep on fighting until we hopefully have a cure to rely on.