Brittany on Cediranib trial Phase 1 in Edmonton

[D.ap]

Happy birthday to you Brittany !

Oh Bonni, Brittany and family. Our most heart felt hugs and high fives go to ALL of you. We are celebrating with you always.

Sharing in the happy dance and good new!!
Love
Debbie

[MartinBube]

Happy Birthday to Brittany Bonni,

Although I'm late I just wish that she continues with the stability and hopefully as we all to get to the final solution for this problem.

I hope you and your family had a wonderful time

[Josh]

Happy birthday. I Hope it's filled with non-ASPS thoughts and joy

[jcs2007]

it made my day to see these birthday wishes for Brittany since I have been following her case since 2007. My son will be 20 next week so I was checking out the site for any new treatment ideas. He is still taking ARQ 197 with 4 month scans. Happy belated birthday B and sending well wishes to all the other ASPS fighters!

[Bonni Hess]

Dear ASPS Community Friends,
On a beautiful, bright, and sunny Seattle day yesterday we VERY thankfully received VERY GOOD!! scan results from Brittany's four month brain and spinal MRI scans which were done at the University of Washington and showed stable disease and no new brain or spinal mets which made our day even more beautiful and bright!! We of course always have scanxiety before Brittany's scans given the unpredictable nature of this insidious disease, but we were even more nervous because Brittany has not been feeling very well and has been having some concerning morning pressure headaches and vomiting which can be symptomatic of brain tumors. Thankfully, our personal review and comparison of the scans with the radiation oncologist yesterday and the formal radiologist report which we received today confirm that Brittany's headache and vomiting symptoms are unrelated to brain or spinal mets. We think that she is probably suffering from the toxic buildup and cumulative side effects of six+ years of daily Cediranib pills and fourteen years of high dose opiate pain meds, but unfortunately there does not seem to be any resolution at this time because she needs both the Cediranib and the pain meds. Brittany's four month Clinical Trial chest/abdominal/pelvic CT scans and results appointments are scheduled in Edmonton on July 9th and 10th. We are holding VERY tight to Hope for good news of continued sustained disease stability and no new mets, and I will write to update as soon as possible after we receive the results. In the meantime, we move forward with strengthened Hope in our hearts happily planning Brittany's joyous August 15th wedding to her long time boyfriend Tim.
Thank you dear Debbie, Martin, Josh, and Cindy for your very kind and special birthday wishes for Brittany which really touched our hearts. We are so deeply grateful for all of the special caring and support of everyone in our ASPS Community which truly strengthens us on this very difficult journey which we all share.
Please take care everyone, have a beautiful Summer brightened with good news and positive scan results, keep in touch as you are able, and know that you are all always held very close in my heart and my most special thoughts.
Celebrating and sharing Brittany's good scan results with great relief, joy, and continued Hope,
Bonni

[D.ap]

Yes mam! Great news!
Thanks for sharing
Hugs to all

Debbie

[MartinBube]

Hi Bonnie

very nice to hear the good result and even more happy to see that you are preparing for a wedding which I wish will bring a lot of Joy in all of your family life's.

[Bonni Hess]

Dear ASPS Community Friends, Today with additional joy and strengthened Hope we received the formal radiologist report with the VERY good results of Brittany's yesterday's annual full body bone scan which VERY thankfully showed stable disease with no new bone mets anywhere in Brittany's body . Brittany's challenging 14 year ASPS journey and VERY courageous and determined battle continues with her four month Clinical Trial chest /abdominal/pelvic scans in Edmonton on July 9th. We are holding VERY tight to Hope that those scans will also show continued and sustained stable disease with no new tumors but we are painfully aware that Brittany could heartbreakingly develop.resistance to the Cediranib and disease progression at any time. For now we are celebrating the VERY good scan results of the past month , and moving forward on this difficult journey with this unpredictable disease with continued Hope. Take care everyone, know that my most caring thoughts and healing wishes are with all of you, and keep in touch with the Board as you are able. With a happy heart filled with great joy and continued Hope, Bonni

[MartinBube]

Hi Bonnie,

just read the good news, although I'm little late happy to hear this that gives hope also to others.

I wanted to ask you since Brittany has been taking this drug for so long and there is no progression and no mets visible is there any forecast how long she will continue to take them?
Or you take them all the time no matter that you are having good scan results?

[Bonni Hess]

Dear ASPS Community Friends,
I am sorry to be a week late in posting the results of Brittany's July 9th four month Clinical Trial chest/abdominal/pelvic scans in Edmonton, but VERY relievingly and thankfully we received VERY GOOD NEWS!! from wonderful Dr. Sawyer that the scans showed continued stable disease and no new tumors!! , so we are now VERY happily and busily moving forward with all of the preparations for Brittany's upcoming and rapidly approaching joyous August 15th wedding which is truly a celebration of Life and Love . Unfortunately Brittany continues to struggle with the debilitating nausea, fatigue, headaches, and other side effects of the Cediranib, so we are Hoping that she will be feeling good on the week of August 15th and able to really enjoy all of the wedding festivities and her long awaited wedding day. Interestingly, ever since beginning Cediranib she has been unable to tolerate any kind of alcohol even in the smallest amount without having severe vomiting, but within the past month she has been able to have a drink or two without getting sick. While we are happy that she is now at least able to tolerate a small amount of alcohol and have some normalcy in her Life when she is in social situations, we wonder if, and are concerned that this may be an indication that she is also developing a tolerance to the Cediranib and it may devastatingly become ineffective in stabilizing the progression of her disease. It is definitely a two edged sword because we of course want her to feel better and be able to regain some normalcy in her Life, but we need the Cediranib to continue to be effective.
In answer to Martin's question about how long and if Brittany will continue to take Cediranib even if she is having good scan results and continued disease stability, at this point the plan is for her to continue to take it as long as it is effective, available, and she is able to tolerate it. We unfortunately have no way of knowing what would happen if she discontinued taking Cediranib since she is a pioneer with this drug having to our knowledge the longest sustained stability on Cediranib of anyone in the World, and there is no data available about the sustainability of stability if the drug is discontinued after long term stability. Needless to say, we are unwilling to take the risk of jeopardizing her VERY hard fought for disease stability.
Because of the busyness of the wedding preparations, I may not be able to be as active on the Board as usual for the next month, but please know that I will continue to check the Board for updates as I am able, and that my most caring thoughts, my very best wishes, and my greatest Hope are with all of you. Take care everyone and have a beautiful Summer.
With a heart filled with deepest gratitude and greatest relief and happiness for Brittany's six+ years of continued sustained disease stability, and continued Hope,
Bonni
With

[D.ap]

Bonni and family

Great new! Prayers are with you all for continued stability and health
Much love and hugs

The Debbie P family
Ps Bonni Chloe had question on foods to avoid while on cedirinib?
http://www.cureasps.org/forum/viewtopic ... 1065#p8330

[MartinBube]

very happy to hear this Bonnie, I know you will have the best wedding.

Enjoy all these excellent moments

[Bonni Hess]

Dear ASPS Community Friends, The immense joy of Brittany's beautiful and victorious August 15th wedding celebration of Life and Love was increased with the VERY good and relieving scan results from her September 9th brain and spinal MRI's at the University of Washington . We had requested to have the scans done a month earlier than the new four month scan schedule because Brittany had been experiencing some very concerning, severe, chronic, relentless headache pain for the past month. VERY thankfully and relievingly the scans, which we personally viewed and reviewed with the radiation oncologist as always, were clear with no new mets . Because of the location and Brittany's description of the nature of the headache pain, the radiation oncologist thinks that the cause may be a benign occipital nerve neurolgia which can be caused by a virus and easily treated with a cortisone injection if Brittany continues to have the headache pain. We will be exploring this with a pain doctor. We have also decided to pro-actively return to a three month brain and spinal MRI schedule to help alleviate the stress and fear caused by having to wait four months between these scans knowing how quickly ASPS brain mets can develop and grow. Brittany's four month Clinical Trial chest CT and abdominal/ pelvic MRI scans and results appointment are scheduled in Edmonton October 22nd and 23rd and we are holding VERY tight to Hope that we will receive good news of continued sustained stable disease with no new mets. As always, I will keep the Board updated. Take care everyone, know that you are all held very close in my heart and thoughts always, and keep in touch as you are able. With great relief and happiness and continued Hope, Bonni

[Olga]

Bonni - we are happy to hear about continued disease stability and regression on cediranib for Brittany. I was wondering if the chronic headaches might be a result of the chronic cediranib administration given that it is a very strong TKI inhibitors - might that negatively affect nerves or blood vessels etc.? Can you ask Dr. on a trial to request an up to date side effect info or you can contact Pf.Judson to ask if he has seen anything like that (the second route might be preferable in order not to jeopardize Brittany's participation in a trial). Also cortisone is a hormone so be careful with it.

[D.ap]

Bonni
Such great news with the wedding and the clear scans!
I hope the headaches subside soon
Love
Debbie and family

Ps Bonni what dose is Brittany on at this time ?