Brittany on Cediranib trial Phase 1 in Edmonton

One of the most promising trials currently open.
MarietjievdMerwe
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Re: Brittany on Cediranib trial Phase 1 in Edmonton

Post by MarietjievdMerwe »

Dear Bonni,

It was with a very big smile on my face that i read your post on Brittany! :) This is such wonderful news. Still sorry to hear about the terrible side-effects but so glad that everything went well and the results are so positive. :)

We are truly sooooo happy for you! :)

Kind regards and a VERY special hug to Brittany.

Marietjie.
Bonni Hess
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Re: Brittany on Cediranib trial Phase 1 in Edmonton

Post by Bonni Hess »

Dear Marietjie,
Thank you so much for your very kind response and special caring. I too had a very big smile and great joy in my heart when I read the WONDERFUL!! news about Tok's VERY GOOD!! scan results :-). Both of our families truly have much to be grateful for during this Holiday season, and strengthened Hope to begin the New Year with.
With deepest gratitude, happy smiles, warm hugs, special caring thoughts, healing wishes for Tok, and continued Hope,
Bonni
Jorge
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Re: Brittany on Cediranib trial Phase 1 in Edmonton

Post by Jorge »

Hi Bonnie,
It has been some time since my last update.
I read part of the story of Brittany (it's not easy to read so much English for me), as long as I read, it's not easy for you and Brittany. However, Brittany is lucky that Cediranib works for her! That's the most important thing.
Take good care of Brittany, and give her my warm hug.
By the way, how is Brittany doing recently? It's getting cold there please take good care.
Bonni Hess
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Re: Brittany on Cediranib trial Phase 1 in Edmonton

Post by Bonni Hess »

Dear Jorge,
Thank you for your very kind and caring message and warm hug for Brittany. Heartbreakingly, she continues to suffer from the negative side effects of the Cediranib, and her Cediranib caused insomnia has become very severe and debilitating :-(, but in spite of it all, she stays positive, as active as possible, and continues to Live each day with great determination, purpose, passion, and joy. She is full of the spirit and happiness of the Holidays and is graciously hosting Christmas at her Home for all of our family :-). She is currently receiving twice monthly outpatient intravenous rehydration to try to prevent the dehydration that often results in severe nausea, headaches, and vomiting requiring emergency hospitalization, and thankfully thus far, it seems to have been successful :-). Barring any concerning new symptoms, her next monitoring scans aren't scheduled until early February. In the meantime, we continue to hold VERY tight to Hope that the Cediranib will provide continued, sustained, and long term stability until a permanent treatment and cure can be found.
I Hope that you and your dear family are doing well ,and that the Gamma Knife treatment is shrinking and destroying your treated brain mets. I will be anxiously awaiting your next update in the Personal Update section when your time and the situation allow. Take care and know that my continued most caring thoughts and healing wishes are with you.
Reaching out across the miles to share warm hugs, deepest caring, and continued Hope,
Bonni
Arch
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Re: Brittany on Cediranib trial Phase 1 in Edmonton

Post by Arch »

Dear Bonni,

I'm glad to hear that Brittany continues to be on the Cediranib trial. Wishing you, Brittany and all our dear friends here a very merry christmas and a happy new year.

Regards
Arch
Olga
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Re: Brittany on Cediranib trial Phase 1 in Edmonton

Post by Olga »

Arch, it is so great to hear from you and thank you for keeping all of us in your thoughts.
Olga.
Olga
Bonni Hess
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Re: Brittany on Cediranib trial Phase 1 in Edmonton

Post by Bonni Hess »

Dearest Arch,
How very kind it is of you to write with your special caring thoughts and good wishes for Brittany and everyone in our ASPS Community.
I know how especially difficult the Holidays are for you and your dear family without your beloved Sree physically here with you, but I know too that he is, and always will be, ever present in your heart and the cherished memories you all shared together. Please know that you, your family, and Sree continue to be held very close in my thoughts, and you remain a special part of our ASPS Family. Take care dear friend and feel the embrace of my warm hugs and my continued deepest caring and friendship.
With wishes for a healthy New Year that brings peace and comfort to your aching heart,
Bonni
Bonni Hess
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Re: Brittany on Cediranib trial Phase 1 in Edmonton

Post by Bonni Hess »

Dear ASPS Community Friends,
Belated Happy and Healthy 2013 best wishes to everyone :-) I am sorry to be slow with this update, but I have been away from the computer the past two weeks because I have been busy with the joyous arrival of our first grandchild/grandson who was born on January 4th :-) In addition to this VERY happy and wonderful beginning to this new year, we thankfully also received VERY GOOD!!! results from Brittany's three month brain and spinal MRI's in Seattle on Tuesday, January 8th which showed no new tumors and continued disease stability in the brain and spine :-) Brittany's 46 month Cediranib Clinical Trial chest/abdominal/pelvic CT scans and results appointment are in Edmonton on February 7th and 8th. As always, I will update as soon as possible after the appointment, and I am holding VERY tight to Hope that I will be able to share more good news of continued disease stability and no new tumors. In the meantime, we move forward into 2013 with great joy and continued Hope in our hearts, and in ongoing determined pursuit of a permanent treatment and cure for this disease which so cruelly invaded our Lives eleven and a half years ago, and which heartbreakingly has also invaded or somehow touched the Lives of everyone on this Board. Please take care everyone, know that all of you are always in my most caring thoughts, and keep in touch with the Board as you are able.
With much happiness, deepest caring, and continued Hope,
Bonni
MarietjievdMerwe
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Re: Brittany on Cediranib trial Phase 1 in Edmonton

Post by MarietjievdMerwe »

Dear Bonni,
I am crying with joy!!!! God is good. It is absolutely the BEST news ever on Brittany. :):):) We are so very very very happy for you! And the news on your newest member of the family: CONGRATULATIONS! It is absolutely the best feeling in the world. :)

As you said dear Bonni, may 2013 be the best year for our ASPS family. May we share all happy and positive news. We will keep on fighting this monster.
Keep well and a VERY SPECIAL hug for Brittany from Tok and myself.

Best wishes.
Marietjie. :) ( I am still doing the happy dance!)
Bonni Hess
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Re: Brittany on Cediranib trial Phase 1 in Edmonton

Post by Bonni Hess »

Dear Marietjie,
Thank you for your very kind words and for your special shared happiness of Brittany's good brain and spinal MRI results, as well as the joyous arrival of our precious new little grandson. My joy is truly doubled with the VERY good news from your most recent update about how well Tok is doing :-), and the strengthened Hope that it brings. I deeply share your wish for 2013 to be a MOST happy and positive year for everyone in our ASPS family with only good news of treatment success, stable disease, and Hopefully the finding of a permanent cure for this insidious disease.
Joining you in doing the happy dance and reaching out across the miles to embrace Tok and you with special New Year hugs, deepest caring, healing wishes, warm friendship, and continued Hope,
Bonni :-)
Bonni Hess
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Re: Brittany on Cediranib trial Phase 1 in Edmonton

Post by Bonni Hess »

Dear ASPS Community Friends,
Brittanys 46 month Cediranib Clinical Trial status scans which were scheduled for tomorrow (Thursday, February 7th) had to be cancelled and re-scheduled for next week since Brittany was heartbreakingly emergency hospitalized with severe vomiting this morning and therefore unable to fly from Seattle to Edmonton :-(. We were SO Hopeful that the every two week IV re-hydration which Brittany has been receiving the past couple of months would prevent another severe vomiting episode from the toxic buildup of the Cediranib, but unfortunately she had to cancel her re-hydration appointment yesterday due to schedule conflicts so we are wondering if lack of hydration may have caused the sudden onset of severe and uncontrollable vomiting today. She is in the hospital now receiving IV fluids, Zofran, and pain meds which has thankfully somewhat stabilized the vomiting and headache pain. Hopefully she will remain stable and be able to be discharged within the next day or two, and then fly to Edmonton next week for her re-scheduled scans which will Hopefully bring good news of continued stable disease with no new tumors. I will update the Board with the scan results after we receive them a week from Friday. Take care everyone.
With special caring thoughts and continued Hope,
Bonni
MarietjievdMerwe
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Re: Brittany on Cediranib trial Phase 1 in Edmonton

Post by MarietjievdMerwe »

Dear Bonni,
This heartbreaking news. I really am so sorry to hear this. Hope Brittany recovers soon enough to go for the scans. Very best of luck and we will be thinking of her in our prayers.
Special hug to Brittany.
Kind regards.
Marietjie.
Amanda
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Re: Brittany on Cediranib trial Phase 1 in Edmonton

Post by Amanda »

Bonnie,
I am sorry she is not well :(
I am amassed by her an her strength and drive to kill this beast!
I hope she is feeling well very soon!
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~

Amanda
Bonni Hess
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Re: Brittany on Cediranib trial Phase 1 in Edmonton

Post by Bonni Hess »

Dear Marietjie and Amanda,
Thank you for your very kind and caring words. After a very difficult two days, Brittany's vomiting and severe headache pain was finally stabilized with IV meds and she was feeling well enough to be discharged from the hospital last evening (Friday). We are increasingly concerned about the toll that these severe vomiting episodes are taking on her body after the almost four years that she has been on Cediranib and experiencing such severe and prolonged vomiting. She has courageously endured so much, and she pays such a high price of physical suffering to be able to Live, but we don't know what the resolution is given the risk of rebound and disease progression if she discontinues taking the drug.
With deepest gratitude for your special caring and friendship, and with continued Hope,
Bonni
D.ap
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Re: Brittany on Cediranib trial Phase 1 in Edmonton

Post by D.ap »

Bonni

How is Brittany doing today? How about yourself?

Sincereley

Debbie-Joshua's mom
Debbie
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