Brittany on Cediranib trial Phase 1 in Edmonton

[skyflower]

Congratulations Brittany, this is really awesome news

[Bonni Hess]

Dear Olga, Ivan, Arch, Amanda, Dotty, and Skyflower,
Thank you for sharing the good news results from Brittany's last Thursday's chest/abdominal/pelvic CT scans with so much special joy, kindness, and caring. Your continued strengthening support, encouragement, and special friendship mean so very much to us. Hopefully I will be able to share more good news of no new brain or spinal tumors following Brittany's October 4th brain and spinal MRI's and our October 5th results appointment. Olga, regarding your questions about Brittany's current Cediranib dosage and the status of the Edmonton Cediranib Clinical Trial, Brittany remains on the 30 mg. daily doseage which she has been on since the end of July 2009 after having the dose reduced from the initial 45 mg. following two severe vomiting episodes that she experienced a couple of months after beginning the Trial. The Edmonton Phase 1 Cediranib Trial has been closed to new patients since shortly after Brittany started it in April 2009, but it is still ongoing with four remaining patients including Brittany still partcipating in it and having continued stable disease. Brittany is the only ASPS patient in the Trial because the Trial was open to patients with many different kinds of cancer since the primary goal of the Trial was to determine the effect of Cediranib on the Tuberculosis drug Rifampicin, rather than to determine the efficacy of Cediranib. Brittany was only on the combined Rifampicin and Cediranib medications for one week during the second week of the Trial. Dr. Sawyer said that one of the Trial patients is now on a reduced 20 mg. dosage because she is very short and thin and probably doesn't require the higher dosage for her body size. She has apparently been able to maintain her disease stability thus far at the lower dosage. Dotty, I am so sorry that Jordanne has been suffering with severe vomiting, and I Hope that it has resolved or at least gotten better by now. Brittany experienced a long night of repeated severe vomiting this past Saturday night until Sunday morning, but thankfully it finally resolved without her needing to be hospitalized for re-hydration and IV anti-nausea meds as happened with her previous severe vomiting episodes. She seems to be feeling much better now, but of course that is a relative term with the chronic diarrhea, nausea, hand/foot syndrome, headaches, etc. which are ongoing side effects of the Cediranib which she courageously endures. I Hope that all went well with Jordanne's Monday and Tuesday NIH Clinic visit and scans, and I am anxiously awaiting your update on her scan results while holding very tight to Hope for good news of continued stable disease and additional tumor shrinkage. Please take care everyone and know that you are all held very close in my heart and most caring thoughts.
With deepest gratitude, special caring, and continued Hope,
Bonni

[wendik]

Dear Bonni and Brittany,
Haven't been on the boards for awhile with getting Matt re-settled in his home in Ft. Lauderdale. It was a very tearful goodbye for both of us.
But I was SO happy to read your great news!!! That her disease is as stable as it is now is just phenominal, and I will certainly pray that it remains that way.

Wendy

[Bonni Hess]

Thank you for your very kind words and shared special caring dear Wendy. I Hope that Matt is continuing to tolerate the Cedirnaib well, and that all is going well for him in Fort Lauderdale. My special thoughts and best wishes for safe travels and a very good Clinic visit will be with him when he has his NIH appointment tomorrow. Please take care and keep in touch with the Board as you are able.
With deepest gratitude, special caring thoughts, and continued Hope,
Bonni

[cachabamba10]

Dear Brittany and Bonni:

Congrats on the news. sorry, I know I am a little bit late You all take care.

Sincerely;

Mario E. Arevalo

[Bonni Hess]

Dear ASPS Community Friends,
Thankfully the VERY happy, relieving, and encouraging results of Brittany's yesterday's brain and spinal MRI's are that
there are no new brain or spinal tumors! Because of Brittany's history of brain and spinal mets, she has brain and spinal MRI's every three months at the University of Washington in Seattle since those areas are not being followed by the Cediranib Clincal Trial in Edmonton because she didn't have tumors in the brain and spine at the time that she began the Trial. Brittany's excellent spinal neurosurgeon, Dr. Tredway, said that he is actually surprised, but obviously very relieved and happy, that Brittany doesn't have any new spinal tumors since it has been two and a half years since he resected her large spinal tumor and although he tried to remove as much of the tumor as possible, he doesn't think that he was able to completely get all of the tumor cells which had invaded the vertebrae. He definitely attributes the lack of any more spinal tumors to the effects of the Cediranib. Brittany's excellent radiation oncologist, Dr. Rockhill, was equally relieved and happy that Brittany continues to have stable disease with no new brain or spinal mets, and is very impressed with the results of the Cediranib treatment thus far. Interestingly, he said that although Cediranib unfortunately did not prove to be successful in preventing disease progression for patients with Glioblastoma ( primary brain cancer), it was found that Cediranib helps to reduce the brain swelling associated with brain tumors and that subsequently helps to reduce the need for high doses of steroids which are so very debilitatiing.
Thank you Mario for your very nice message, and again to everyone on this Board for all of your continued strengthening support and encouragement, your special caring, and your vitally important and greatly valued sharing.
With special caring thoughts and continued Hope,
Bonni

[Amanda]

HI Bonnie!
This is wonderful news!!!
Hugs and cheers to all of you!!

[Fictional]

This is wonderful, Brittany and Bonni! FANTASTIC news.

[wendik]

Dear Bonni,



HUGE SMILE!!!!!

Love, Wendy

[DottyW]

Bonni,
Please give Brittany a big high five from me. So happy to hear that she continues to have stable disease.
I tried to post Jordanne's latest results but my computer shut down just as i hit post. So will try again later.
Everything looks good for her and they were able to see that she had a sinus infection which could have contributed to her vomiting. She has not had any since she has recovered from her virus.
There were no new mets and possible shrinking of her largest 8mm met, but with a CT scan it might be the same , either way at least it's not growing and some of the mets did not show up but they may be small enough to be hiding between the pictures.
One of the most remarkable things in Jordanne's progress is that she is no longer regularly taking any pain meds! compared to last winter, this is huge! Her foot starts to hurt when it gets cold but she is learning how to manage her pain. She hasn't had her spinal cord stimulator turned on in over a month as well. This is all a complete answer to prayer as her nerve is definitely continuing to heal.
She will see her oncologist, Dr. Lonegran tomorrow so he will go over her scan results with her in more detail. She was unable to have a PT scan because the machine was on the fritz. That's OK because it would have lit up like a Christmas tree with all of the coughing she was doing.
So that is pretty much Jordanne's update. If any of the administrators would like to just copy this to Jordanne's personal updates, that would be much appreciated. I'm not that technical!
Blessings to all,
Dotty

[Bonni Hess]

Dear ASPS Community Friends,
We just returned last night from Brittany's nineteen month Cediranib status scans in bitterly cold (minus nine degrees!) and very snowy Edmonton, Alberta with preliminary GOOD NEWS!! of continued stable disease with no new tumors and no increased tumor growth, based on Dr. Sawyer's oncological associate's visual review of Brittany's Thursday's chest/abdominal/pelvic CT scans. Unfortunately, Brittany's extremely knowledgeable and highly respected primary Clinical Trial oncologist, Dr. Sawyer, was not there to personally review the scans with us as he was in Germany for a meeting, and the radiologist report was not yet available, so we will have to wait until next week to confirm the preliminary opinion of stable disease, but for now we are cautiously optimistic that the Cediranib is continuing to be effective. All of Brittany's blood work and her ECG results thankfully remain good. I will update the Board with the results of the radiologist's report as soon as we receive it. In the meantime, Brittany has gratefully not had any extremely severe vomiting episodes requiring hospitalization since early June and some of her negative side effects seem to be lessening. However her nausea and chronic diarrhea continue, and recent weight loss is concerning, but this could be a result of our recent trip to Mexico and the additional abdominal issues ( Montezuma's Revenge ) caused by eating some of the food there.
Please take care everyone, and keep in touch with the Board as you are able as it is vitally important for all of us to have everyone's invaluable shared information and valued input to help guide us in fighting this challenging disease and making critical treatment decisions.
With special caring thoughts and continued Hope,
Bonni

[Amanda]

YAY!!!
I am so happy to hear this wonderfil news!

Happy happy holidays to you all! <3

[LCMA]

That is fantastic, Brittany is a tough girl! I can relate to the chronic diarrhea Is Brittany on facebook?

LCMA

[Arch]

Wonderful news! We are so happy for you.
Happy holidays!

Arch & Sree

[Bonni Hess]

Dear Amanda, LCMA, and Arch,
Thank you for sharing the preliminary good news of Brittany's scans with so much special joy and kindness. Your caring support and friendship mean so very much to us. Yes LCMA, Brittany is on Facebook and she would love to have you as a Facebook Friend and be able to communicate with you . We are still anxiously awaiting the written radiologist report, but are holding VERY tight to Hope that it will confirm the initial findings of continued stable disease. As you all know so very well, the battle with this disease is a continued roller coaster, and we are getting increasingly nervous as Brittany's time on Cediranib gets closer to the two year mark that Cediranib was effective for Paul Mavers before he tragically apparently developed resistance to the medication and disease progression (We never received any specific information about Paul's devastating loss other than that he died as a result of complications during brain surgery which we assume was being done to resect new or growing brain mets. However in our communication about a year ago with Professor Judson, Paul's highly respected oncologist at the Royal Marsden in London, he told us that at that time the longest Cediranib had been effective for an ASPS patient was two years) We know that each patient is different in their individual response to treatments, so we are holding VERY tight to Hope that Brittany will have a much longer and more sustained response until a permanent treatment and cure can be found sometime very soon, but we also know how very treatment resistant and unpredictable this insidious disease can be, so we continue to research, search for new treatments, and to worry.
Hopefully I will be able to update within the next few days with a confirmation from the radiologist report of stable disease from Brittany's scans. In the meantime, please take care dear Amanda, LCMA, and Arch and enjoy a most happy, healthy, beautiful, and bountifully blessed Thanksgiving Holiday shared together with family and friends.
With special caring thoughts and continued Hope,
Bonni