Brittany on Cediranib trial Phase 1 in Edmonton

[MarietjievdMerwe]

Dear Bonni,

You are so right. Brittany is one couragous young woman and an inspiration to all. Having to cope with so much in her young life and having to endure so much is really showing her strength.

Bonni, something I saw in our papers this morning: a clinical study on a vaccine called JX-594 also called Pexa-Vec, done in France. This study was published in a journal called Nature Medicine. As I understand this is a virus which attacks "solid" tumors. Pexa-Vec is manufactured in California by Jennerex.

Just immediately thought of you and Brittany when I read this.

Keep well dear Bonni and a extra special hug to Brittany on this day.

Kind regards.
Marietjie.

[Olga]

Bonni, I posted a link to a new article today in Related publications and just wanted to make sure you saw it:
so I repost here as they discuss the problem with the discontinuation of the therapy.
Complete Remission With Tyrosine Kinase Inhibitors in
Renal Cell Carcinoma
http://jco.ascopubs.org/content/early/2 ... l.pdf+html

[Amanda]

Hello
thank you for posting this information:) I looked an found this also *see links* this looks promising <3

http://clinicaltrials.gov/show/NCT01169584


http://www.graysmedicine.com/tag/development


http://search.centerwatch.com/default.a ... rcoma&pg=3

When Dr Foshag calls me i will also ask him about this study

Dear Bonni,

You are so right. Brittany is one couragous young woman and an inspiration to all. Having to cope with so much in her young life and having to endure so much is really showing her strength.

Bonni, something I saw in our papers this morning: a clinical study on a vaccine called JX-594 also called Pexa-Vec, done in France. This study was published in a journal called Nature Medicine. As I understand this is a virus which attacks "solid" tumors. Pexa-Vec is manufactured in California by Jennerex.

Just immediately thought of you and Brittany when I read this.

Keep well dear Bonni and a extra special hug to Brittany on this day.

Kind regards.
Marietjie.

[MarietjievdMerwe]

Amanda,

Could this be it????

Like you say: in healing hopes....

Marietjie.

[Bonni Hess]

Dear ASPS Community Friends,
We just returned very late last night from Edmonton, Alberta with VERY happy hearts after receiving the VERY GOOD NEWS!! from Brittany's Valentine's Day 46 month Clinical Trial chest/abdominal/pelvic CT scans which thankfully showed continued disease stability and no new tumors!! Needless to say this is the best Valentine's gift that we could receive and our hearts are filled with great joy and strengthened Hope .
We had requested that Dr. Sawyer arrange for us to personally review and compare Brittany's current scans and those from two years ago with the radiologist just to ensure that there has been no cumulative growth that may have gone undetected/undocumented during the past two years as has unfortunately occurred with a couple of other patients on this ASPS Board who suddenly discovered that the"minimal tumor growth" reported in their scans had accumlated over several scans to become significant and concerning met growth. Thankfully, the scans appeared as nearly identical as possible and unchanged, allowing for the unavoidable margin of error of very minimal differences in CT slices and Brittany's breathing during the scans. Dr. Sawyer thinks that the remaining "lesions" are probably dead scar tissue from her ablations and from the Cediranib since there has been no increase in their size during the past several years . We continue to be deeply grateful to Dr. Sawyer and the wonderful Cross Cancer Institute staff for their dedicated care and willingness to make the time for our special requests for vigilant review and comparison of Brittany's scans which we feel/know is so critically important in managing this unpredictable disease.
Thank you dear Marietjie, Olga, and Amanda for your thoughtful shared information and links. We were already familiar with the article on
"The Complete Remission With Tyrosine Kinase Inhibitors in Renal Cell Carcinoma" thanks to Feng Zhou having previously thoughtfully shared the article with me in a personal message. I had sent the article to Dr. Sawyer for his review and for us to discuss during Brittany's Clinic appointment yesterday which we did. Although the results of the study are very encouraging and intriguing, and they provide great Hope for the possibility of being able to discontinue TKI treatment following a successful TKI response and sustained disease stability as Brittany has thankfully had thus far with Cediranib, the study was done with Renal Cell Carcinoma (RCC) rather than ASPS patients, and this is an isolated study. We know that ASPS is often included/allowed in RCC Clinical Trials because the two cancers apparently share similar bilogical similarities, but at this time, Dr. Sawyer as well as us are still too uncomfortable with "rocking the boat" and are unwilling to jeopordize Brittany's 46 months of disease stability and possibly risk rebound and disease progression by taking her off of the Cediranib until more data specifically related to ASPS and discontinuation of Cediranib is available. So our Cediranib journey continues with deepest gratitude for the 46 months of sustained disease stability and dramatic tumor shrinkage/disappearance that it has provided for Brittany, and greatest Hope that someday very soon a permanent ASPS cure will be found.
Thank you everyone for your continued special caring, strengthening support and encouragement, friendship, and invaluable sharing. Please take care, keep in touch as you are able, and know that you are all held very close in my heart and most caring thoughts.
With a heartful of special happiness and continued Hope,
Bonni

[Olga]

Bonni, thank you for an update and we all are happy for Brittany and very grateful for cediranib to come in time for her almost 4 years ago when there were no options to deal with all the multiple problems she had then.
As for discontinuing problem - it is very understandable very tempting but also very dangerous, as only half of the patients had continued to have their stable stability and once she is off cediranib trial - she can not go back, so she might need to remain on this trial until cediranib will be approved so she would be able to get it if she needs it.

[D.ap]

Thank you everyone for your continued special caring, strengthening support and encouragement, friendship, and invaluable sharing. Please take care, keep in touch as you are able, and know that you are all held very close in my heart and most caring thoughts.With a heartful of special happiness and continued Hope,Bonni

Dear Bonni and Brittany

Thank you so much for sharing the good news. As for you thanking us for our supprt, I'd like to thank you both for your courage and perserverance that we all have gotten from you both.

Love

Debbie

[MarietjievdMerwe]

I can only say "amen" on Debbie's reply.

Thank you for keeping us updated, this means so much to all of us. Brittany's fighting spirit is truely a Blessing.

Marietjie.

[Bonni Hess]

Dear ASPS Community Friends,
After eleven and a half years of the immense heartache of this very challenging battle, we celebrated with greatest happiness Brittany's victorious 31st Birthday on April 9th . We are also celebrating with much joy and relief the VERY GOOD results of her yesterday's (April 19th) regularly scheduled three month brain and spinal MRI's at the University of Washington which thankfully showed no new brain or spinal tumors!!! We had been especially worried because Brittany has been experiencing concerning headaches for the past month, but with the scans thankfully and relievingly appearing to be clear of any tumors, we think that her headaches may be due to the immense emotional pain and anguish caused by the devastating loss of her beloved cousin who we all continue to deeply mourn.
Brittany has now had 48 months of disease stability since beginning her Cediranib Clinical Trial in April 2009. We continue to be profoundly grateful for her thus far very successful and long term response to Cediranib, and to hold VERY tight to Hope for continued and sustained disease stability, as well as continued availability of the Cediranib. Brittany's 49 month Clinical Trial chest/abdominal/pelvic CT scans are scheduled for May 9th in Edmonton and will Hopefully bring continued good news results. As always, I will update the Board with the results as soon as possible. In the meantime, please take care everyone, know that my special caring thoughts and best wishes are with all of you, and keep in touch with the Board as you are able.
With a heart filled with great relief, happiness, and continued Hope,
Bonni

[Amanda]

Hello

Asi have told you in the past April 9th is for special people wonderful strong beautiful woman.. It is also my mothers birthday!

I am very sorry about your loss... But, i am so happy that she is stable and doing great! Thats a gift to us all!

[Bonni Hess]

Thank you for your special caring and support which mean so much dear Amanda. Your mother must have been a very special, wonderful, strong, beautiful woman to have produced such a very special, wonderful, strong, beautiful daughter!
I Hope that all is going well with you and that you are enjoying a beautiful California Springtime. Take care and keep in touch as you are able.
With deepest gratitude, special caring thoughts, and continued Hope,
Bonni

[Amanda]

Hello Bonnie
Thank you ! <3

[Josh]

Great news, again! Here's hoping for these good results to continue.

[Bonni Hess]

Hi Josh
Thank you for sharing the joy of Brittany's good scan results with your kind words and good wishes I Hope that all is going well with your new treatment. I will be anxiously awaiting your next update which will Hopefully also bring good news of disease stability.
With special hugs, caring thoughts, healing wishes, and continued Hope,
Bonni

[MarietjievdMerwe]

Dear Bonni

It is with great joy that I read your post on Brittany. Very happy belated birthday to her as well. She is always in my thoughts.

Keep well and a special hug to Brittany.

Kind regards.
Marietjie.