Brittany on Cediranib trial Phase 1 in Edmonton

[Bonni Hess]

Dear Arch,
Thank you for your very kind and gracious words. It was so good to hear from you. You are missed on this Board, but you and your beloved Sree are always held very close in my heart and my most caring thoughts. I Hope that you are finding your way through the darkness of your grief to a place of peace and comfort and knowing that dear Sree will always Live in your cherished memories and the deep love that you shared together with each other and your family.
Continuing to share the immense sorrow and tragedy of Sree's devastating loss to this insidious disease and reaching out to embrace you with caring hugs, warm friendship, and love,
Bonni

[Bonni Hess]

Dear ASPS Community Friends,
Our scanxiety was greatly increased for Brittany's yesterday's four month brain and spinal MRI scans at the University of Washington because these were the first scans since we changed from the three month to the four month scan schedule at the radiation oncologist's recommendation to try to prevent Brittany from developing an allergic reaction to the MRI contrast which is essential for finding mets at the smallest most treatable size. However, despite the additional month between scans, VERY thankfully and relievingly both the brain and spinal MRI's showed continued stable disease with no new mets!! Based on Brittany's now five and a half years of continued and sustained disease stability since she began the Cediranib Trial in April 2009, her radiation oncologist, Dr. Rockhill, is suggesting that we now extend her brain and spinal MRI schedule to every five or six months, but we are unwilling to do that at this time knowing from personal and other ASPS patients' experience how very unpredictable this insidious disease is and how very quickly brain and spinal mets can develop and grow. For now we will err on the side of caution and continue with the four month scan schedule holding VERY tight to Hope for continued and long term disease stabilization, and good news results from Brittany's four month Clinical Trial chest CT and abdominal/pelvic MRI in Edmonton on November 13th.
Take care everyone, know how deeply appreciated your continued shared special caring and support is, and keep in touch with the Board as you are able.
With a happy heart filled with great relief and continued Hope,
Bonni

[D.ap]

Bonni and Brittany and family

What wonderful news!!
Give yourselves hugs from all us here in eastern Kansas.

All our love
Debbie

[MarietjievdMerwe]

Bonni,

Fantastic news! How wonderful to be able to share this awesome news with you.

Love.
Marietjie.

[Amanda]

Bonnie, my happy meter just exploded lol
Is she the only asps patient responding this way?

I agree with you after the drama I just went thru do not change scan times yet! One main reason a mothers inner and women's inner voice telling you to not do this! Never betray that dear friend

Please share my happiness with her an she is hope to so many here!

I'm so happy lol

Love to you all!

[Bonni Hess]

Dear ASPS Community Friends,
As Thanksgiving approaches, we are additionally deeply thankful and grateful for the VERY GOOD!! scan results which we received yesterday in Edmonton from Brittany's Thursday's four month Clinical Trial chest CT and abdominal/pelvic MRI which VERY thankfully showed CONTINUED SUSTAINED DISEASE AND NO NEW TUMORS!! after Brittany's now five and a half years of Cediranib treatment. With this being the first chest/abdominal/pelvic scans on the new four month scan schedule our scanxiety was even greater than normal, so it was with increased great relief and special joy that we received the VERY GOOD!! results and read the confirming radiologist report . Unfortunately Brittany continues to courageously suffer the debilitating side effects of the Cediranib, but thankfully her nausea and vomiting are greatly reduced and helped by bi-monthly intravenous re-hydration as well as marijuana use, both of which I would recommend for any other Cediranib or anti-angiogenic treatment ( Sunitinib, Pazopanib, etc.) patients who are struggling with treatment related nausea and vomiting. As always we continue to move forward on this now 13 and a half years ASPS journey relentlessly researching and networking with other ASPS patients and their families, painfully aware of the unpredictability of this insidious disease and knowing that Brittany could develop reistance to the Cediranib and disease progression at any time, and holding VERY tight to Hope for her continued sustained disease stability and successful response to Cediranib until a permanent treatment and cure can be found. We continue to Hope too that ALL ASPS patients and/or their families will actively participate on this Discussion Board to share anecdotal treatment information results and experiences, whether they are positive or negative, because it is all invaluable information and critically important for everyone in the ASPS Community to have in order to help make difficult treatment decisions in the challenging battle with this extremely rare and little known disease. In the meantime, please take care everyone, have a warm and peaceful upcoming Holiday season shared together with family and friends, keep in touch and update the Board as you are able, know how deeply grateful we are for your continued strengthening support and encouragement in the midst of your own ASPS battles, and know too that you are all held very close in our hearts and most caring thoughts always.
With a very thankful heart filled with great relief, much happiness, and continued Hope,
Bonni

[D.ap]

Brittany and Bonni and family

Double joy being shared from here in the Midwest !
I was just thinking of you all and am so so happy to hear the great news

All my, our love
Debbie and family

[Jorge]

Happy New Year!

Bonnie,
I'm so so happy for you and Brittany. Look forward to continued stable news in your next update!

Love,
Lynette

[Bonni Hess]

Dear ASPS Community Friends, It is with great relief and happiness that we received the VERY good results of Brittany's today's 4 month brain and spinal MRI at the University of Washington . Preliminary review of the scans by the radiation oncologist VERY thankfully showed stable disease with no new brain or spinal mets and no visible remains of any of Brittany's previously Gamma Knifed brain mets which all appear to have completely disappeared!! We had increased scanxiety for these scans because Brittany has been experiencing some concerning dizziness, but based on the clear scan results her radiation oncologist thinks that the dizziness is the result of a benign cause such as thyroid issues which can Hopefully be resolved by adjusting Brittany's thyroid medication if the blood tests show the thyroid levels are too low or too high, or possibly positional vertigo which will be further evaluated and treated if necessary. Brittany's 4 month Cediranib Clinical Trial chest CT and abdominal/pelvic MRI scans and results appointment are in Edmonton this coming Thursday and Friday and we are holding VERY tight to Hope that they will also show continued stable disease and no new tumors. In the meantime, tonight we are celebrating with immense joy, deepest gratitude, and strengthened Hope Brittany's 70 months of brain and spinal met stability since beginning the Cediranib Trial in April 2009 With a heart filled with great relief and special happiness, caring thoughts, and continued Hope, Bonni

[Olga]

Great news! I hope for continued stability for Brittany in the lungs and other locations as well,
thank you Bonni,
Olga.

[D.ap]

Bonni

Wonderful news.
Than you for sharing the great news
Our prayers are with your family for safe travels and with Brittany for continued stability.
All our love
The Josh P family

[Bonni Hess]

Dear ASPS Community Friend,
It is with additional great joy and strengthened Hope that we received yesterday's VERY GOOD!! scan results from Brittany's Thursday's four month Clinical Trial chest CT and abdominal/pelvic MRI in Edmonton which means that she has now VERY thankfully had 70 months of disease stability and no new tumors since beginning the Cediranib Trial in April 2009!! However, despite these clear scans and her clear brain and spinal MRI and the normal thyroid and other test results of a week ago in Seattle, Brittany is continuing to have some perplexing headaches, black out episodes, and severe sweating. Dr. Sawyer, who is extremely knowledgeable and experienced, is unsure what may be causing these symptoms, but said that they could be the result of the cumulative effect of Brittany having been on Cediranib for so long since she is, to his knowledge, the patient who has been on Cediranib for the longest amount of time in the World, and is therefore a pioneer in the long term side effects of the drug. If her symptoms don't resolve we will have further evaluation done to try to determine the cause which could possibly be the result of a positional vertigo inner ear issue.
We are deeply and especially grateful to Dr. Sawyer for his continued incredible dedication and vigilance in personally closely reviewing Brittany's scans during which he discovered an inexcusable mistake in the radiologist report which erroneously and very perplexingly noted a lesion in Brittany's pelvis which is actually not in her pelvis at all but is the necrotic remains of a previously ablated met in her lung which has remained unchanged in size and shape for the past 70 months of scans. Dr. Sawyer assured us that there is no lesion in Brittany's pelvis and that the one which the radiologist reported is definitely the same one in the lung which we have always seen and been aware of. This mistake by the radiologist demonstrates the critical importance and necessity of a personal review of the scans by the oncologist because radiologists can and do sometimes make mistakes including missing or reporting new mets as disasterously happened with Brittany's large spinal met which then grew to become paralysis or Life threatening and resulted in a major very debiliatating surgery that has heartbreakingly caused Brittany severe and chronic pain for the past seven years.
Barring any concerning new symptoms, Brittany's next brain and spinal MRI's will be in late June and her Clinical Trial chest CT and abdominal/pelvic MRI will be in mid July. We continue on this challenging long journey with ongoing great Hope for Brittany and everyone in the ASPS Family. Please take care and keep the Board updated when your time and situations allow. We all need everyone's shared anecdotal treatment information which is invaluable in helping us all better fight this insidious disease.
With a heart filled with great joy and relief, special caring thoughts, healing wishes for everyone, and continued Hope,
Bonni

[D.ap]

Bonni

We are all sharing in your joy of clear scans and hoping Brittany can find the culprit causing the headaches and sweats very soon!

Love and hugs across the miles,

Debbie and family

[MarietjievdMerwe]

Bonni,
It is with much joy and happiness that I read your post on Brittany just now!

Your daughter is a trooper.

Much love and a special hug to Brittany.

Marietjie.

[Bonni Hess]

Dear ASPS Community Friends, Today we CELEBRATE!!! with greatest joy, deepest gratitude, and ongoing Hope Brittany's victorious HAPPY 33rd BIRTHDAY and the priceless gift of her precious Life and sustained disease stability made possible by the Cediranib Clinical Trial which she began 6 years ago in April 2009. With a very happy and deeply grateful heart, and continued Hope, Bonni ♡