Brittany from Washington - Dx 2001

[Amanda]

Dear Bonni
Just was wondering bow Brittany was doing and how you are doing?
I hope all is going well!

*Hugs and hope*

Amanda R

[Amanda]

Dear Brittany and Bonni,
It has been about two weeks now and i wanted to let you know you are still very much in are prayers and of healing hope!
Though i do not know your fathers name we have added him also

With hope and healing and prayers..

Amanda R

[Ivan]

Enjoying that 3C Edmonton weather? Cheer up, it will be 15C+ and sunny in a few more days

[Bonni Hess]

Dear ASPS Community Friends,
As a result of the concern raised by 'K''s recent atrium met which was diagnosed by an ECHO scan that was part of the monitoring requirements for 'K''s Crizotonib Clinical Trial, we asked Brittany's Cediranib Clinical Trial oncologist, Dr. Sawyer, to schedule a heart ECHO for Brittany. Brittany had her heart ECHO in Edmonton on Friday, October 22nd while she was there for her required monthly Clinical Trial visit. Thankfully the results of the ECHO showed no indication of any intercardiac mets which was especially relieving to us since Brittany had been experiencing some crushing chest pain symptoms. Since Brittany's ECG scans continue to be normal and the ECHO was clear, Dr. Sawyer feels that the chest symptoms are probably related to the indigestion and acid reflux side effects caused by the Cediranib, instead of any cardiac problems. We are glad that Brittany had the heart ECHO to alleviate our concerns about heart metastasis, and I would like to encourage everyone to schedule one to make sure that there aren't any undetected heart mets which may have been missed by chest CT scans, as heartbreakingly occurred with 'K'. Take care everyone.
With special caring thoughts and continued Hope,
Bonni

[Ivan]

Perhaps her discomfort is related simply to the muscles? E.g. http://saveyourself.ca/articles/perfect ... oralis.php

[Bonni Hess]

Thank you for that insightful thought and the helpful shared information Ivan. Brittany's chest discomfort could possibly be muscle related since the Cediranib definitely causes joint pain and muscle weakness, and this is certainly something which we will explore.
With deepest gratitude for your special caring and sharing, and with continued Hope,
Bonni

[LCMA]

Happy for you that no METS were found. I'm sure Brittany is very relieved as well. I hope they find something to soothe that nasty chest pain soon!!

LCMA

[Olga]

Congratulations to Brittany with her 33 years old birthday! You look so much younger - I have no idea how do you manage to do that having endured so many treatments and stress of life with ASPS for 14 years. We also very grateful to Astra Zeneca for their efforts to develop Cediranib that made in part this survival possible - Brittany is the best responding patient on this drug and continues to be stable with no new mets and most of the old ones regressed for 6 years already.
More on her Cediranib journey can be found here:
http://www.cureasps.org/forum/viewtopic ... &start=300

[Bonni Hess]

Dear ASPS Community Friends, For those of you who are interested in reading more about Brittany's ASPS journey since my last post in this Personal Updates topic on October 25th, 2010, please go to the Cediranib topic under the "Other Clinical Trials" topic on the main Discussion Board where I continue to post regular updates about Brittany and her VERY thankfully thus far VERY successful 8+ years Cediranib Clinical Trial treatment. With special caring thoughts and continued Hope, Bonni

[Disco76lover]

Hi, I’m just wondering how you are doing Brittany? I hope the pain is manageable. I am confused with the above post re spine and wondered if cediranib helped stabilize the spine mets? I really hope you are well x

[Bonni Hess]

Dear Melanie, This is Brittany's mother Bonni writing as Brittany no longer actively participates on this site as she found the devastating losses of too many CureASPS.org patients who she had communicated with and become close with, too emotionally difficult to continue to cope with. I also was confused about Debbie's post and question which is why I didn't respond to it. However, in regard to your question, Brittany VERY thankfully did not develop any further spinal mets following her major laminectomy to remove her large paralysis/Life threatening spinal met in 2008, and she VERY thankfully has not had any new mets anywhere in her body since beginning her Cediranib Clinical Trial in April 2009. Her severe debilitating post laminectomy pain heartbreakingly continues, but we are continuing to aggressively explore possible treatment options to provide her with some desperately needed pain relief. I Hope that your precious young daughter is having continued disease stability and that she is continuing to tolerate her Cediranib treatment well. Take care. With special hugs, caring thoughts, healing wishes, and continued Hope, Bonni

[D.ap]

Hello Bonni
I was asking whether Brittany had received any treatments of any kind , prior to her spinal tumor ..
I couldn’t find where the vaccine trial was in reference to the spinal tumor appearing .
I can certainly understand and appreciate Brittany’s feelings ... I feel this to be the consensus of quite a few ASPS patients , Josh included .
They need to choose their battles .:/
Certainly you’ve all seen a lot more deaths than all of us combined I bet,however each person has their limits .

I’ve answered my question with the ARQ trial post .

Please have a enjoyable remaining day
Love to you and yours .

[Disco76lover]

I am so relieved to hear of no new mets but very sad that Brittany is experiencing such pain. Ellie is 2 years into this insidious disease but thankfully the cediranib is keeping things stable for now. Brittany is certainly our hope and inspiration for being on the drug so long and how she has dealt with it. I have to say that I draw strength and hope from the likes of you and Debbie, as well as other parents on this site, who have been such an inspiration at times when things get a bit much, coping with so much worry and anxiety as us parents do. It is certainly a roller coaster. I really hope Brittany gets relief from the pain Xx