Brittany on Cediranib trial Phase 1 in Edmonton

[Bonni Hess]

Thank you for your special thoughts and positive perspective on the scan schedule change dear Debbie. We of course welcome less CT scan radiation exposure for Brittany's lungs (her abdominal and pelvic scans are now MRI's which thankfully minimalize radiation exposure), but the alternative of possibly not finding new mets at the smallest most treatable size with more frequent scans remains a concern.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[jcs2007]

Thanks for sharing your positive news of Brittany's scan showing stability and I continue to pray the scans in April will remain stable. Since Sam did ARQ for so long, it will be interesting to see if it helps him later if he needs to try a new systemic treatment. Thanks for always sharing your experiences with the board.

[D.ap]

Hi Bonni and family

I hope the December scans were with good results .

Love
Debbie

[Bonni Hess]

Dear Debbie,
Thank you for your caring awareness of Brittany's scheduled December brain and spine MRI. Brittany had her 4 month brain and spine MRI at the University of Washington in Seattle on December 21st, but I have not posted the results yet because we need to obtain more definitive information regarding some concern expressed by the radiologist regarding possible tumor recurrence in the brain as per the following radiologist report:

1. Mildly increased tiny focus of contrast enhancement and FLAIR
hyperintensity within the right cerebellar vermis compared to August 29, 2016
and more remote exams could represent a small vessel or early recurrence of
tumor. Attention on short-term follow-up imaging is recommended to assess for
interval change. Otherwise, stable post treatment changes without other
concerning foci.

2. No MRI evidence of metastatic disease within the spine.

Although concerned, our radiation oncologist's comments were " he can’t know with confidence so he is “hedging” his bets to be on the safe side". However, she referred Brittany's case to the Tumor Board the results of which she summarized as follows:

Okay, while all agreed there have been changes over time, very subtle small changes, it is still unclear if this is tumor change. The whole group, while cautiously optimistic, agreed with shorter interval follow up which I suggested then in two months. I will put in orders for follow up and would suggest you be seen on a Wednesday because both Dr. Rockhill and our neuro-oncologist, Lynn Taylor, MD would be in clinic if she were needed to offer her expertise. She was slightly less concerned that this was tumor I think, but agrees with the need for short interval follow up.
This is the best I can do to reassure you to have an optimistic outlook until imaging is repeated.


Based on the concerns of possible brain tumor recurrence and our knowledge that if resistance to the Cediranib does develop, disease progression can be very rapid and aggressive, we have requested a follow-up brain MRI a month from the December scan instead of the Tumor Board recommended two months, and the appointment is in the process of being scheduled for January 26th or 27th. We also shared the concerns and radiology results information with Dr. Sawyer at CCI and have requested that Brittany resume her four month Clinical Trial chest/abdominal/pelvic scan schedule to more frequently and proactively monitor her disease status, as opposed to the Astra Zeneca proposed 6 month schedule. Dr. Sawyer, although encouragingly cautiously optimistic about Brittany not having brain tumor recurrence and disease progression, has agreed with our request to maintain the four month monitoring scan schedule and Brittany is now scheduled for her Clinical Trial scans and results appointments in Edmonton on February 23rd and 24th.In the midst of all of this concern, my husband Jim was unexpectedly diagnosed with Coronary Artery Disease last week for which he underwent a speedily scheduled cardiac catheterization and angioplasty (stent implant) for two significantly blocked arteries (commonly called "Widow Makers") on Friday. He was discharged from the hospital on Saturday and very thankfully seems to be recovering well at Home. As we all know FAR too well, Life is very unpredictable and fragile, but as with ASPS, we must remain medically as proactive and knowledgeable as possible, listen to our own bodies, and not always take the doctors advice to just "wait and watch" which probably saved Jim's Life when he insisted on receiving a more definitive cardiac Stress Test despite having had 2 Emergency Room EKG's, blood work, and a CT scan which appeared to show that his heart was "fine"...
We are holding VERY tight to Hope that Brittany's upcoming scans will show no tumor recurrence or disease progression. As always, I will update the Board with the scan results when I am able.
Take care everyone, stay pro-active and strong, and please keep actively in touch with the Board because shared researched and anecdotal treatment information continues to be one of our strongest weapons in fighting this very challenging and unpredictable disease.
With increased concern, but holding VERY tight to continued Hope,
Bonni

[D.ap]

Bonni
My heart and prayers ,as your family makes adjustments to all you've been faced with . It's all well within the realm of being able to rise above and conquer, however that's so easy for me to say .

Our heart felt prayers to you and Jim and Brittany for strong heart and no tumor progression as well as with the and for the caretakers today and forward.

Please reach out if need be and we are here for you when the need arises.

Love to you
Debbie

[D.ap]

Bonni and Jim

I hope you both have felt the prayers coming your way and are on the mend tonight .
Our love to you.

Debbie and family

[Bonni Hess]

Thank you for your continued kind expressions of special caring and support dear Debbie. We are facing the additional challenge of Jim's newly diagnosed coronary artery disease and the concerns about Brittany's recent brain MRI results with a determined positive attitude, a pro-active approach, and continued Hope as we continue on our journey working together as Team Hess. Scheduling Brittany's one month brain MRI versus the two month scan recommended by the University of Washington Tumor Board required perseverance and a refusal to take no for an answer knowing how rapidly this insidious disease can progress especially in the brain . Gratefully, Brittany"s brain MRI is now scheduled for January 25th as we requested/demanded. Heart to heart with deepest gratitude, special caring thoughts, healing wishes, and continued Hope, Bonni

[Bonni Hess]

Dear ASPS Community Friends,
Brittany's yesterday's one month brain MRI at the University of Washington to try to clarify the concerning December 21st finding of "Mildly increased tiny focus of contrast enhancement and FLAIR hyperintensity within the right cerebellar vermis" combined with comparisons of several previous brain MRI scans dating back to 2012 VERY thankfully and relievingly seems to indicate that the very small and difficult to see area of previously unreported fuzzy enhancement noted on the December radiologist report has actually been present for several years, and it has not grown or changed over the years so it DOES NOT appear to be/the radiologist oncologist does not think it is, tumor. He is unclear about what it is, but thinks that it could be a blood vessel or possibly just related to normal changes in the brain. He said that it is not scar tissue or inflammation. Based on the assumption that it is not tumor, and the MRI results which VERY thankfully didn't show any signs of new tumors or disease progression in the brain, we are proceeding with a four month brain MRI schedule barring any concerning brain tumor symptoms. In the meantime,we will continue to closely monitor the disease with Brittany's four month Clinical Trial chest/abdominal/pelvic scans and scan results appointments in Edmonton which are scheduled for February 23rd and 24th. As always, we are deeply grateful for all of your dedicated caring and strengthening support as we continue this difficult roller coaster ASPS journey which we all share. Take care everyone and keep in touch with the Board as you are able.
With a VERY happy heart filled with immense relief, great joy, and continued Hope,
Bonni

[Bonni Hess]

Dear ASPS Community Friends,
With VERY happy hearts we received a VERY special belated Valentine's gift on February 24th with the VERY GOOD SCAN RESULTS!!! from Brittany's four month February 23rd scans in cold and snowy Edmonton. VERY gratefully Brittany's chest CT and abdominal/pelvic MRI scans all showed continued disease stability with no new tumors . Brittany continues to suffer some, but gratefully not all, of the chronic debilitating side effects of the Cediranib, and is thankfully feeling good enough to actively enjoy skiing and other activities which she has been physically unable to do for many years during her long, challenging, courageous,15 and a half year ASPS battle. We continue to be deeply grateful to Brittany's incredible Clinical Trial oncologist, Dr. Michael Sawyer, and all of the wonderful Cross Cancer Institute Phase One Staff for all of their ongoing dedicated work, special care, compassionate caring, and professional guidance on Brittany's almost 8 year Cediranib Clinical Trial journey. We will remain on the four month scan schedule for now as we are apprehensive about extending it to six months given the unpredictable nature of this insidious disease, and the fact that Brittany is a pioneer in the long term use of Cediranib. Brittany's four month brain and spinal MRI's will be scheduled in Seattle in late May and then her four month Clinical Trial chest/abdominal/pelvic scans will be June 22nd in Edmonton. In the meantime, we move forward into Spring (which will Hopefully arrive sometime soon after this long, very snowy, seemingly endless Winter ), with hearts filled with great happiness and deepest gratitude for Brittany's almost 8 years of continued sustained disease stability. Take care everyone and keep in touch with the Board as you are able. With special caring thoughts, healing wishes, and continued Hope,
Bonni

[D.ap]

Bonni and family
Sending hugs and a big sigh of relief along with all of you and family .
It's really wonderful to hear of Brittany enjoying her skiing trip !
Love to you and family
Debbie

[danieldew7]

Congratz Bonni!
It is always good news to know that there is no new 'spot'!

[ntran727]

I just saw this post. So happy that her scans continue to be clear and that she is feeling well enough to go skiing! Today is the first day of spring, but we just had 2 snowstorms here in New York. Can't wait for spring!

[Bonni Hess]

Dear ASPS Community Friends,
As Brittany said in her Facebook post following her recent May 31st four month brain and spine MRI's at the University of Washington, " My cancer journey used to be much more of a rollercoaster ride. But ya know what? I am MORE than OK with "boring". That being said, BRAIN & SPINE MRI's are ALL CLEAR!!!!! Yay!Yay! Yay! " Needless to say, we are all VERY happy and relieved that the scans showed continued disease stability in the brain and spine, and these GOOD NEWS!! results will NEVER get boring!! We had more scanxiety than usual (if possible...) because Brittany has been experiencing some concerning ongoing severe headaches recently , but VERY thankfully they are apparently not the result of new brain mets Based on Brittany's now 8+ years of disease stability since she began the Cediranib Clinical Trial in April 2009, her long time radiation oncologist at the University of Washington continues to strongly encourage us to extend her brain and spine MRI's to once every six months instead of once every four months. However, based on the unpredictable nature of this insidious disease, the knowledge that ASPS brain mets can develop and grow very rapidly, and the awareness that Brittany could develop resistance to the Cediranib and disease progression at any time, we decided to compromise and agreed only to extend the brain and spine MRI schedule to once every five months, while still maintaining the once every four month Clinical Trial chest/abdominal/pelvic scans schedule. Brittany's four month chest/abdominal/pelvic scans and results appointment are scheduled in Edmonton June 22nd and 23rd, and we are holding VERY tight to Hope for GOOD RESULTS!! of continued disease stability and no new tumors.
I Hope that this finds all of you doing well and having a good start to your summer. Take care everyone, stay strong, and keep in touch with the Board as you are able.
With a happy heart SO deeply grateful to be able to share continued GOOD NEWS!!, and with special caring thoughts and continued Hope,
Bonni

[D.ap]

Bonni, Brittany and Family
Sharing in your joyous feeling of relief of clear scan reports today ! Prayers for continued clear scans at the end of June, as well

Love
The Pearson's

[Disco76lover]

So pleased disease stability is continuing. As my daughter has just started on cedirinab I am interested to know if any of Brittany's lung mets disappeared on the drug or if they shrank / stayed the same? My daughters largest lung met on the last scan, before treatment started was 0.3cm or 3mm.