Brittany on Cediranib trial Phase 1 in Edmonton

[Bonni Hess]

Dear Beth,
I am so deeply grateful for, and humbled by, your very kind, thoughtful and gracious sharing of valued information and strengthening support and encouragement for Brittany's Cediranib treatment at a time during which I know you are immersed in the depth of your own personal grief for the very recent devastating loss of your beloved Jonathan. You, like dear Jonathan, obviously possess an incredible inner strength and courage, and a very giving and caring heart. Thank you for sharing it so beautifully with me. Please take care of you, feel my arms reaching out to embrace you and hold you, and know that my deepest sympathy and caring, my most special prayers, and my love are with you and your family.
Continuing to share the profound pain and sorrow of dear Jonathan's tragic loss, continuing to fight our shared battle with this insidious disease, and continuing to hold very tight to Hope,
Bonni

[jcs2007]

Glad to hear Brittany is feeling better on the reduced dose of cediranib.
Keeping Brittany and your family in my prayers. Looking forward to your
update after the scans.
Peace and blessings,
cindy

[Bonni Hess]

Dear ASPS Community Friends,
It is with great happiness and strengthened Hope that I am writing to report that Brittany's four month Cediranib Clinical Trial chest/abdominal/pelvic CT's which were done in Edmonton on August 14th thankfully showed NO NEW TUMORS! and that "all of the disease does appear stable." The radiology report did note that the tumor in the pancreatic head is " marginally larger AP diameter", but Dr. Sawyer said that the increase was very minimal and that it was actually smaller in one dimension, so he wasn't concerned about it. He was very happy and encouraged with the scan results. I'm sorry to be so slow in writing to update the results, but I have not had any computer access because immediately following the results appointment, we left Edmonton to celebrate the good news with a driving and camping trip to beautiful Jasper Park and Banff Park in the spectacular Canadian Rockies. We just returned Home to Washington late last night because Brittany is scheduled for a short outpatient surgery tomorrow morning to remove a small superficial abdominal wall tumor. Although the tumor has not increased in size since the scans two months ago, it visibly protrudes on Brittany's thin abdomen which is disconcerting, and since it is a relatively easy surgery, all of the doctors have agreed that it would be best to remove it while it is easily resectable, and to reduce the tumor burden. Because of the anti-angiogenic effect of the Cediranib which could interfere with healing from the surgery, as per the Clinical Trial protocol Brittany has discontinued taking the medication for the past two weeks and won't be able to resume it until her incision has healed. Hopefully the incision will heal quickly and Brittany will be able to start taking the Cediranib within a week as we are concerned about the rebound effect of her being off of the medication for too long. Since being off of the medication, the negative side effects of severe fatigue, nausea, vomiting, muscle pain and weakness, easy bruising, foot and hand syndrome, mouth sensitivity, and sun sensitivity have been greatly reduced. I will continue to keep this Forum updated on her Cediranib experience and scan results. Thank you everyone for your continued caring, encouragement, and strengthening support. Take care and know that you are all held very close in my heart, thoughts, and prayers.
With special caring thoughts and continued Hope,
Bonni

[Fictional]

This is AWESOME news, Brittany and Bonni! Congratulations and rock on!

Keeping you in prayer pre-op and post-op.

Based on Clare's report - no significant rebound has been seen off the drug.... and if anything there seem to be continued efficacy months after stopping.

: )

[Beth]

Wonderful news! thanks Bonni!

love,
Beth

[Bonni Hess]

Dear ASPS Community Friends,
It is with a very happy heart and strengthened Hope that I am writing to update more good and encouraging news from Brittany's this weeks brain and spinal MRI's. Brittany's Clinical Trial chest/abdominal/pelvic CT scans are done every other month in Edmonton as per the Clinical Trial protocol, but because she didn't have any brain or spinal mets when she began the Trial, they are not following her brain or spine with scans in Edmonton, so they are done in Seattle every three months. Thankfully, her Wednesday brain MRI and Thursday spinal MRI both showed no new tumors, and incredibly, her previously Gamma Knifed brain mets have now completely disappeared! We are very relieved and encouraged by the scan results, and are very Hopeful that the Cediranib is working to stabilize the progression of the disease and to destroy the mets. Brittany's next chest/abdominal/pelvic scans are scheduled for October 23rd in Edmonton, and then we will meet with Dr. Sawyer, the excellent Clinical Trial oncologist, to discuss the scan results on October 26th. We are holding VERY tight to Hope for continued good news of continued disease stabilization and tumor necrosis/shrinkage. Brittany seems to be tolerating the reduced 30 mg. Cediranib dosage much better thus far, with fewer and less severe side effects. I will update this Forum as soon as possible with the October 26th scan results. In the meantime, please take care everyone, have a beautiful October, and keep in touch with the Web site as you are able.
With special caring thoughts and continued Hope,
Bonni

[Amanda]

Bonnie!!! YAY!!!
As i sit here now my lil family is standing by me with tear filled eyes of happyness!
Please, tell her i said OMG YAY!
I am beside myself right now filled with such hope for Brittany and everyone else!

In healing hopes for all and *cheers for Brittany*

Amanda

[Olga]

Bonni, thank you for the good news, we all need it so much. There is a lot of information for us in the post like yours - not only about cediranib that seems to be working, but also about Gamma knife is very useful treatment for the small ASPS brain mets, even when they are recurrent and multiple. A few years ago multiple brain mets would not be treated at all and look at that - Brittany finally gets clean brain MRI after having brain surgeries, multiple gamma knife treatments, even rare technology on a trial in Boston local ablation-like laser-induced thermotherapy by Dr.Black...Good to hear this result, all doctors involved and contributed should be satisfied.

[Fictional]

Hooray, Brittany!!

[jcs2007]

Thanks for sharing this encouraging news. Your family so deserves it!
Blessings,
Cindy

[Bonni Hess]

Dear ASPS Community Friends,
It is with immense happiness and greatly strengthened Hope that I am writing to share Brittany's INCREDIBLE and EXTREMELY ENCOURAGING SCAN RESULTS!!!!! from her six month Clinical Trial scans which were done in Edmonton on Friday. The preliminary radiologist report which we received yesterday when we met with Dr. Sawyer to discuss the results states that "there is dramatic improvement at all sites as compared to the previous August 2009 exam"! The targeted lung mets and the pancreatic met have "dramatically decreased " in size by more than half, the pancreatic mass which was previously 3.8 cm. has shrunk to 2.2 x 1.3 cm and is now cystic rather than solid , a right lower lobe nodule has completely disappeared, and a lateral pole fascia mass in the abdomen shows "near total resolution"!!!!! Dr. Sawyer was extremely happy and excited about these incredible results, and was surprised to see this significant response to the medication this far into the treatment, as apparently the greatest response and shrinkage is usually seen at the very beginning of the treatment. Thankfully, Brittany is continuing to tolerate the reduced 30 mg. dosage fairly well, with less severe and fewer of the very negative side effects which she experienced with the 45 mg. dose. We are VERY happy, encouraged, and are holding VERY tight to Hope for her continued very successful response to the medication, and her ability to tolerate it. Brittany's eight month Clinical Trial scans will be in two months probably around December 18th because of the Christmas holidays and, as always, I will write as soon as possible to update the scan results. In the meantime, if anyone has any questions about Brittany's Cediranib experience thus far, please feel free to write me on this Forum or e-mail me privately at BonniHess@aol.com. Please take care everyone, stay actively involved with this Web site, and keep sharing your anecdotal treatment information which is truly one of our most powerful weapons in fighting this extremely rare disease, and which is how we first learned about the promising Cediranib medication from English ASPS patients Paul Mavers and Clare Clarke to whom we are so profoundly grateful for their gracious sharing.
With special caring thoughts and strengthened Hope,
Bonni

[Fictional]

Hallelujah and Praise God! Doing the happy dance for Brittany and your whole family!

[Amanda]

Hello Bonnie and Brittany
Why is it i read this news when i am getting my lil one on the bus and end up crying, lol I think i need to read this thread when he is at school. lol
I am so happy and spechless! For me being like this is as we all know rare!!!
I am in hopes we have a cure :/ But, i am in fear of even saying "cure" still.. But, it looks like it maybe!!!!

*looks at 'F' smiles and starts also dancing!*

In many happy tears and hopes that we have found a cure!

Love and light to all!

Amanda

[Olga]

I am so glad for Brittany, there could not be a better time for this drug to be avail. on the trial for her when it was so daunting hard to find any practically viable solution how to proceed last year with all the metastases being found in different locations. How long does she have to stay on this Edmonton trial? She might be able to switch to NCI trial later on?
I feel so proud that I probably contributed to the Cediranib trial for ASPS specifically opening at the NCI. I was sending quite a a few e-mails to Pf.Judson and to Astra Zeneca research team re. need to open this specific trial all last year after the last year CTOS conference release about promising results in ASPS patients. They were reluctant if the enrollment would be possible given very low number of the ASPS patients world wide and I assured them that our web-site will be an active place to facilitate the process informing the patients world wide about this new exciting possibility. May be it did not play any role though but may be it did?

[Amanda]

Hello Olga
I feel that you talking to them did make a huge difference and i am so thankfull for this! I know it did make a difference because they knew who you were when i called them, lol Many of the posts you have made for all of us have been a huge help! <3
I am glad you had the time to come on the forums i know that you have been away with family and wanted you to know that you have all been in my prayers! You have also been missed my many in both forums.

In healing hopes for all!

Amanda