Brittany on Cediranib trial Phase 1 in Edmonton

[MarietjievdMerwe]

Dear Bonni,
I am overjoyed!!! Brittany's a true fighting spirit! A real inspiration to us. Today I will celebrate with you the most wanted good news!

Keep Hoping and very special hugs from us.
Kind regards.
Marietjie.

[Bonni Hess]

Dear Marietjie,
Thank you so much for sharing the great happiness and strengthened Hope of Brittany's good scan results with your very kind and caring words and so much special joy which truly touches our hearts. Unfortunately, as this roller coaster journey continues, Brittany was heartbreakingly hospitalized again on Friday with severe vomiting . Through IV rehydration and anti-nausea and pain meds her vomiting has thankfully now been stabilized and she is feeling somewhat better. Hopefully she will be able to be discharged from the hospital tomorrow. We are becoming concerned about the increasing frequency of her severe vomiting episodes and the toll that it is taking on her body, and fear that she may be reaching a saturation level of a toxic buildup of the Cediranib in her body. We will closely monitor this situation, discuss it with Dr. Sawyer, and Hopefully be able to find some kind of a solution for it. I will update the Board as I am able. Take care my friend and give Tok a special hug from me and my very best wishes.
With deepest gratitude for your special caring, and with continued Hope,
Bonni

[MarietjievdMerwe]

Dearest Bonni,

This is so heartbreakingly sad. I really am so sorry to hear this concerning news. We will continue hoping and praying for Brittany.

Special hugs from Tok and myself.

Keep well, dear Bonni.

[MarietjievdMerwe]

Dear Bonni,
Couldn't sleep last night. This is all new territory to me and all the info is a bit overwhelming. I was just wondering that would it be a possibility to consider removing Brittany from the trial? So sorry to be asking you this.
Thinking of you and Brittany and a very special hug from me today.
Kind regards.
Marietjie.

[Bonni Hess]

Dear Marietjie,
Thank you for your very kind caring and concern for Brittany. The negative side effects of the Cediranib and the toxic build-up of the drug in her body are very difficult and debilitating for Brittany, but we would be very reluctant to take her off of the Trial completely given the forty months of disease stability and disappearance of her multiple and widely disseminated mets that it has thankfully provided thus far. Based on our observations and research,there is a great risk of rebound and aggressive disease progression when Cediranib is discontinued, and because it is a Clinical Trial drug, Brittany would not be able to resume use of it if that were to heartbreakingly occur. We are currently exploring the possibilty/advisability of a possible dosage reduction in communications with Dr. Sawyer. There are so many unknowns since Brittany is a pioneer in the long term use of Cediranib with no other patients, to our knowledge, who have remained on the drug this long with sustained stability. I will continue to keep the Board updated. Thank you again dear friend for your special caring.
With deepest gratitude, special hugs and caring thoughts for you and Tok, healing wishes for Tok, and continued Hope,
Bonni

[Trixi]

Wow... reading this report is overwhelming. I will keep Brittany covered in prayer for health/healing and well-being in her body... and the doctors for wisdom in making the correct decisions concerning Brittany's continued treatment plan.
Trixi

[MarietjievdMerwe]

Dear Bonni,

I would also like to say that we are keeping Brittany in our prayers and do believe that you, Brittany and dr Sawyer will make the right decission regarding Brittany's further treatment.

Have a peaceful day with special hugs from us.
Marietjie

[Bonni Hess]

Dear ASPS Community Friends,
It is with great happiness, much relief, and strengthened Hope that we received the finalized radiologist report today from Brittany's October 4th three month brain and spinal MRI's confirming continued stable disease in the brain and spine with no new tumors We are so deeply grateful that the Cediranib has now provided Brittany with almost 42 months of sustained stability. Her next scans will be her 43 month Clinical Trial chest/abdominal/pelvic CT's on November 15th and we are holding very tight to Hope that those scans will also show continued disease stability.
Take care everyone and please keep the Board updated with your current treatment information and results because shared anecdotal treatment information remains one of our most powerful weapons in fighting this very challenging disease. Without the information that Paul Mavers thoughtfully shared on this Board about his Cediranib treatment, we would probably not have known about this promising new drug in time to shrink and destroy the unresectable and untreatable pancreatic met that was threatening to take Brittany's precious young Life four years ago. Any information that you share, whether it be about a successful treatment or a failed treatment, may help to save another ASPS patient's Life!
With deepest caring, healing wishes for everyone, and continued Hope,
Bonni

[MarietjievdMerwe]

Bonni!

I only saw your post on Brittany just now!! :):):) It is such absolutely wonderful news! I really am overjoyed for you. She is a trooper, in every sense of the word.

Thank you for letting us know.

Very best wishes.

[Bonni Hess]

Dear Marietjie,
Thank you for sharing the joy of Brittany's good spinal and brain MRI scan results with so much happiness and special caring, and for your kind words and strengthening support which mean so very much. Brittany will be having her 43 month Cediranib Clinical Trial status chest/abdominal/pelvic CT's in Edmonton on November 15th and then we will meet with Dr. Sawyer on November 16th to review the scans and discuss the results. As always, our scanxiety is growing, but we are holding very tight to Hope that the scans will show continued disease stability with no new tumors. I will update the Board with the scan results as soon as possible following the scan review appointment.
With deepest gratitude for your caring and kindness, and with special caring thoughts for Tok and your family and continued Hope,
Bonni

[MarietjievdMerwe]

Dear Bonni,

Would just like to say that I will be thinking of you and Brittany tomorrow. I truly believe that you will be getting the best news ever. As you say, dear Bonni, we will be holding very tight Hope that there will only be positive results for Brittany.
A very special hug to Brittany from us.

Keep well.
Marietjie.

[Bonni Hess]

Dear ASPS Community Friends,
We just returned late last night from Brittany's 43 month Clinical Trial status chest/abdominal/pelvic CT's in Edmonton. As Thanksgiving approaches, we have much to be grateful for with the VERY GOOD!! scan results which thankfully showed continued stable disease and no new tumors!! This was the first chest/abdominal/pelvic status scan since we changed from having the scans every two months to every three months to try to reduce the concerning amount of CT radiation and contrast that Brittany receives as well as reducing the amount of travel and travel expenses required to go to Edmonton every two months. Because of the additional month between scans we were especially nervous, so needless to say, we are extremely relieved and happy about the VERY good and encouraging scan results .
Heartbreakingly, Brittany continues to suffer from the debilitating side effects of the Cediranib, and she was very nauseated and vomiting before, during, and after her return flight to Seattle . We discussed with Dr. Sawyer the possibility of reducing Brittany's daily Cediranib dosage to 20 mg. from 30 mg. to try to reduce/alleviate the toxic side effects of the drug, but he, and we, are very concerned about jeopardizing the disease stability that she has had for the past 43 months and risking possible disease progression with a decreased dosage. If the dosage was reduced to 20 mg. and Brittany then devastatingly developed disease progression, the Clinical Trial protocol would unfortunately not allow her to resume the 30 mg. dosage to try to restabilize the disease, so at this time she will continue on the 30 mg. dose as long as she is havng a successful response to the medication and is able to continue tolerating the difficult side effects. We are so deeply grateful for Dr. Sawyer's greatly valued and highly respected advice and insights, and his continued dedication to Brittany and trying to ensure that she has the best possible chance of treatment success through his vigilant and personal monitoring of her scans, lab results, and symptoms, and his incredible knowledge.
Thank you dear Marietjie for your special thoughts, believing, good wishes, and hugs for Brittany. Your strengthening support, caring, and friendship are greatly valued and deeply appreciated.
Please take care everyone, have a beautiful and happy upcoming Holiday season shared together with family and friends, and keep in touch with this Board as you are able.
With a heart filled with great happiness and deepest gratitude for Brittany's continued disease stability, with special caring thoughts for all of you in our ASPS Family, and with continued Hope,
Bonni

[Olga]

Bonni - tell Brittany that we are so happy for her! I just hope that NCI receives the info about this continued success and takes it into the consideration, I think that this amazing Dr.Sawyer still reports to Astra Zeneca - or probably they gave away the control over the Phase 1 trial to NCI as well? Hasn't he mentioned anything about it?
What does he say re. what might be the strategy to help the body to flush out the toxins that build up, to do something in addition when taking this drug, like when they give cytotoxic Doxorubicin they give Mesna with it.

[Amanda]

Bonnie!
I am so happy that she is well and that things are going so well!
I read the forums every week and love coming to this thread to smile!

My love to you dear fiend and hugs to all of you!

[Bonni Hess]

Dear Olga and Amanda,
Thank you for your very kind and caring responses to Brittany's good scan results update, and for sharing our happiness with so much joy. We are so grateful for your continued support and valued friendship which mean so very much to all of us .
Regarding your question Olga about whether Dr. Sawyer reports to Astra Zeneca about Brittany's Cediranib results, I assume that AZ is continuing to require the information since Dr. Sawyer's Clinical Trial nursing staff still faithfully document and record all of Brittany's current side effects and other significant data following the strict protocol guidelines established by AZ. When we asked Dr. Sawyer about the status of Cediranib in regard to AZ's planned discontinuation of its development, he said that he hasn't heard anything more about it, and in a recent conversation with someone in authority at AZ who is involved with Clinical Trial drugs, she didn't even mention anything about Cediranib to him. I don't think that NCI recieves any information from Dr. Sawyer about Brittany's Cediranib results as I don't think that they are in communication with each other, and I don't know if the information is shared with them by AZ. I have personally written to NCI and shared Brittany's Cediranib success with them in my plea for them to continue development and production of Cediranib, but frustratingly I never received any response from them.
Unfortunately, there doesn't seem to currently be a remedy "to help the body to flush out the toxins that build up" with TKI drugs like Cediranib. Hopefully something will be found soon as the severe nausea and vomiting episodes take such a terrible toll on Brittany's body. At this point, it seems that the best strategy is for her to discontinue taking the drug for a couple of days when she feels increasing nausea and headaches in Hopes of avoiding a full blown vomiting episode requiring emergency hospitalization for IV fluids and anti-nausea and pain meds. We have also scheduled her to receive out patient IV re-hydration twice a month, and more often if needed, to try to prevent the de-hydration which is associated with her nausea and being unable to orally intake fluids. These side effects are very debilitating, but as long as Brittany is able to endure them, Cediranib seems to be the best available treatment option for her at this time and we are deeply grateful for the 43 months of stabilization of her disease and dramatic tumor shrinkage/disappearance that it has provided thus far.
With special caring thoughts and continued Hope,
Bonni