Brittany on Cediranib trial Phase 1 in Edmonton

[Olga]

Bonni - since you have the fresh brain scans on hands, may be you should get a second opinion from the brain surgeon or someone asking to review the scars from Brittany's previous brain tumor resections and previous Gamma Knife procedures to determine which scar/scars might be located in a spot that could most probably cause the symptoms - as the diff. areas of brain are responsible for diff. functions they should be able to find the ones that are at least suspicious to be the cause for the symptoms? perhaps scars could be resected if they are easily accessible?

[Bonni Hess]

Dear Olga, Thank you for your very caring response, and helpful suggestion. We will share your intriguing idea with Brittany's excellent long time radiation oncologist who is very familiar with all of Brittany's brain treatments and procedures. We are deeply grateful for your highly valued and respected input, and for your many years of special friendship. With deepest gratitude, caring thoughts, and continued Hope, Bonni

[Bonni Hess]

Dear ASPS Community Friends, With greatest joy and relief I belatedly received the VERY best Mother's Day gift of all in Edmonton, Alberta on Friday May 24th with the VERY GOOD scan results of Brittany's 3 month Clinical Trial chest CT and abdominal/pelvic MRIs which VERY thankfully all showed continued stable disease with no new tumors!! Together with incredible, dedicated, and VERY caring Dr. Sawyer and the wonderful Cross Cancer Phase One Clinical Trial nurses, we celebrated Brittany's now TEN YEARS of continued sustained disease stability since beginning the Cediranib Clinical Trial in April 2009. As Brittany continues her courageous almost 18 year ASPS battle, we are profoundly grateful for the gift of Life that Cediranib has made possible for her, and we move forward on this long challenging ASPS journey with the deepest appreciation for that priceless gift, and the great Hope that someday soon an effective permanent ASPS cure will be found. However, Brittany is heartbreakingly suffering increased debilitating neurological symptoms of short term memory loss and extremity numbness and weakness for which we have pursued neurological testing. Because Brittany is a pioneer in the long term use of Cediranib, we don't yet know if her concerning neurological symptoms are Cediranib related, the result of increased spinal decompression from her major spinal laminectomy to remove her large spinal met 11 years ago, her parietal and cerebellum brain met resection and three Gamma Knife procedures, or a combination of these factors. As everyone in this ASPS Community knows FAR too well, this disease and the treatments for it take a huge physical and emotional toll on the patients and the families. I am deeply grateful for the invaluable strengthening support and encouragement provided by everyone on this Board as we continue on our shared ASPS journeys together. Celebrating Brittany's VERY GOOD scan results and her 10 years of sustained disease stability with a heart filled with greatest joy, deepest gratitude, and continued Hope, Bonni

[D.ap]

Bonni , Brittany and family
Sharing your delight of stability.
My hope and prayers for discovery of the numbness and all that it brings , to give Brittany relief soon.
All our love
The Pearson’s

[D.ap]

Bonni
Brittany is an avid snow skier / hiker ( high altitudes)
Have you all investigated anoxia?

https://www.medicalnewstoday.com/articles/320585.php

Has the numbness etc been called / termed ?

Maybe encephalopathy?

https://www.medicinenet.com/encephalopa ... d_overview

[Bonni Hess]

Dear ASPS Community Friends,I Hope that this finds you all having enjoyed a beautiful and relaxing summer.
In the midst of the deep sorrow of yesterday's 18 year anniversary of the profoundly devastating and tragic events of September 11th, 2001, our day was brightened and our heavy hearts were lightened by the VERY GOOD and relieving results of Brittany's six month brain and spinal MRI scans at the University of Washington Medical Center in Seattle which VERY thankfully showed no new brain or spinal tumors, and continued stable disease in those areas. We had been especially nervous about the scans based on Brittany's VERY concerning increasing neurological symptoms, and were VERY fearful that the symptoms were being caused by new brain mets. We are of course, deeply grateful and relieved that no new tumors were found, but we and Brittany's very knowledgeable long time (15 years!) radiation oncologist, Dr. Jason Rockhill, continue to be perplexed as to the cause of Brittany's VERY concerning and debilitating continued and increasing neurological symptoms which include severe headaches, nausea, dizziness, loss of balance, extremity numbness, memory loss, confusion, mood swings, severe fatigue, and 2 seizure episodes. We desperately need and are seeking a diagnosis and treatment for these symptoms, and Dr. Rockhill is making a referral to a new neurologist since Brittany's previous neurologist was frustratingly very inadequate and ineffectual in helping us to find some answers. We fear that the harsh reality is that Brittany's many doctors did not expect her to survive this long, and in their valiant efforts to save/prolong her Life, they subjected her to innumerous scans, surgeries, treatments, experimental drugs, and high dose pain medications with long term side effects that they didn't think Brittany would still be alive to experience, and now they don't know what to do to resolve the damage to her body. Brittany's situation is very complicated with all that her body has been through for the past 18+ years, and it is extremely difficult to isolate and determine a specific cause of her symptoms, but we are VERY Hopeful that a cause and treatment can and will be found. In the meantime, as we continue on this long challenging journey, Brittany will be having her four month chest/abdominal/pelvic Cediranib Clinical Trial scans and results appointment in Edmonton, Alberta on September 19th and 20th, and we are holding VERY tight to Hope that the scans will show continued sustained disease stability. We will be discussing Brittany's concerning neurological symptoms with VERY knowledgeable and dedicated Dr. Sawyer to try to determine if the symptoms could be the result of Brittany's now ten year, five month Cediranib treatment regimen, but we know and understand that Brittany is a pioneer in the use of Cediranib and one of the patients with the longest sustained disease stability in the World on Cediranib, and because Cediranib is relatively new, the long term side effects are unknown at this time. I will post an update on the results of Brittany's September 19th Clinical Trial scans as soon as I am able, and Hopefully will be able to update with GOOD NEWS of continued disease stability with no new chest/abdominal/pelvic mets. Take care everyone, keep in touch as you are able, and let the bright light of continued Hope lead you through each day on this difficult ASPS journey which we all share.
Celebrating the great joy and relief of Brittany's September 11th VERY good scan results with a heart filled with MUCH relief and continued Hope,
Bonni

[Olga]

Bonni, thank you for the update, we are very happy to hear that from the oncology point of view, Brittany condition looks very good.
Is she by any chance on any of the triptans for the migraines? I was on one of them - Sumatriptan - for decades, and my mood swings/migraines/dizziness were increasingly severe till I stumbled upon the study that revealed that the long term use of triptans causes the increased need for them and severe side effects/dependence - each dose causes the next attack a day or few days later. I came off them the very next day and was improving ever since.
On the other hand the chronic inhibition of the TKI is not studied, as you know a TKI is an essential part of the physiological processes and lack of them might cause some serious shift to something else. I would look at the studying the blood work extensively to see if there might be any clue.

[Bonni Hess]

Dear Olga,
As always, your special caring and your very knowledgeable response is deeply appreciated. Brittany has not (yet) been treated for migraines, so the triptan issue would not be relevant, but it is certainly valuable information which may be helpful to us in the future. I am very sorry that you suffer from migraines, but am grateful that discontinuing the Sumatriptan helped to alleviate some of your severe side effects. We recently requested from Brittany's primary oncologist, and obtained a complete blood panel for Brittany, and the results were all normal with the exception of her thyroid levels which continue to be treated with thyroid medication. Because TKI treatments are relatively new, there is no data yet available on the long term side effects of long term sustained TKI use, so we have no way to determine if Brittany's neurological symptoms are the result of her long term Cediranib use, but we suspect that they may be related. It is truly a double edged sword since the promising new drug Cediranib has thus far VERY thankfully saved Brittany's Life for which we are profoundly grateful, but there is no data currently available on the long term risks associated with Cediranib use, nor any of the several promising new TKI and ICI drugs so all that any of us can do is remain vigilant in our observations and research regarding side effects, and Hope that some data will become available soon to help better guide us in our treatment decisions. I Hope that dear Ivan is continuing to tolerate his Keytruda treatment well and to have a VERY successful response to it. Take care dear friend.
With deepest gratitude for your thoughtful caring and sharing, and with continued Hope,
Bonni

[D.ap]

Hello Bonni
I’ve been following your posts and I’m glad you are investigating and moving onto another neurologist .

There is an endocrinologist involved as well?

My heart goes out to Brittany and her having migraines and disconcerting memory loss . :(

How often are her thyroid meds changed during the year , if I might ask ? I assume her bw is checked for levels every 3 to 6 months for Tsh levels ? 100 mg stil?

Sending hugs and prayers for answers , Brittany and her doctors , your way.

Love ,

[Bonni Hess]

Dear Debbie, Thank you for your faithful caring concern, strengthening support, and valued input. Brittany's TSH levels are always checked through her blood work when she has her Clinical Trial scans in Edmonton every four months. I think that your idea of having her see an endocrinoligist is a very good one, and we will now pursue a referral to one from her primary oncologist with Hope that an endocrinologist with oncology expertise is available. There are SO many factors and variables with Brittany's situation, but Hopefully a definitive answer regarding her increasing neurological symptoms, and an easy resolution and treatment can be found sometime soon. As you know FAR too well, it is SO difficult and heartbreaking to watch our precious children suffer and to not be able to find some viable solutions and relief for them. Take care dear friend and have a wonderful Falltime weekend. Heart to heart with deepest gratitude, special caring thoughts, and continued Hope, Bonni

[Bonni Hess]

Dear ASPS Community Friends, I Hope that the New Year 2020 will bring you all happiness, good health, and healing Hope. Our New Year has begun with Brittany's January 16th VERY GOOD four month Clinical Trial chest CT and abdominal/pelvic MRI scan results which VERY thankfully showed continued sustained disease stability and no new tumors. The bitterly cold MINUS 30 degree farenheit Winter weather in snowy Edmonton could not detract from the great relief and joy of Brittany's VERY GOOD scan results, and we now continue on this long challenging ASPS journey with strengthened Hope in our happy hearts. However, the radiologist report noted that there was a finding of "new gall bladder sludge". As per our research, gall bladder sludge is thankfully a benign condition not related to cancer. However, since there are so many unknowns regarding the long term use of Cediranib, and Brittany is a pioneer in the long term use of Cediranib. we are wondering if Brittany's development of new gall bladder sludge may be related to her sustained ten+ years of Cediranib use. We also wonder if her debilitating gastrointestinal symptoms and suffering are the result of the newly diagnosed gall bladder sludge instead of Cediranib side effects as we had assumed, so we will now pursue medical evaluation and treatment of her gallbladder sludge condition by a gastroenterologist. Additionally, Brittany's continuing concerning neurological symptoms including extremity numbness and memory loss are increasing, and we continue to seek evaluation, treatment, and a resolution for those symptoms. Although Brittany has VERY thankfully now had 10+ years of disease stability with her Cediranib treatment, her long very difficult 18+ years ASPS battle continues to take a huge toll, and the battle continues. Take care everyone and keep in touch as you are able as we all continue to fight this insidious disease on our shared ASPS journeys. With special caring thoughts, healing wishes, and continued Hope, Bonni

[Olga]

Awesome news re continued long term response to cediranib, Bonni. In this case there is no good quality medical research re. very long term use of the TKI drugs, although I would advocate contacting the cediranib maker Astra Zeneca to find out if there are any other very long term users of the TKI drugs, and may be other TKI makers (sunitinib, pazopanib) to find out if there are any info re. possible side effects of the chronic TKI inhibition. It is a remarkable result for ASPS, to be cured by the TKI drug. But it definitely comes at the cost of the health issues.

[D.ap]

Bonni,
I second Olga’s response .
The gallbladder indeed can cause irritation and gut disruption .
However our family is so happy for Brittany and your family , for the continued success Cediranib has brought .
Much love ,
The Pearson’s

[D.ap]

Hello Bonni and family,
I’m wondering how Brittany’s seizures etc are doing these days?
I was searching on cediranib through the forum and came upon a post I did back in 2016 in reference to cediranib and the study of biomarkers in giloblastoma Using the combination of blood work, and Mri to see the success of cediranib.
Obviously, you guys are well beyond the initial dose of cediranib, however, I think it would be interesting to know, looking at a base scan from May be back when Brittnay began her treatments, and compare them to what neurologist are showing currently, her brain vascular looks like.

The field of neurology is quite specialized these days, and certainly there should be someone who could do a professional consult and analyze those scans that you’ve all performed.

It appears that there is a doctor involved with that study, who was a researcher ,that have since gone off on his own.
I’m wondering if he could be somebody that you guys could go to to inquire about Brittany’s current issues she’s having with seizures.
Here’s the post
https://cureasps.org/forum/viewtopic.php?p=8938#p8938

And here’s the doctor ,researcher , that was involved with the study at the time of this article.


A. Gregory Sorensen, M.D.,

https://scholar.google.com/citations?us ... AAAJ&hl=en

Thinking of you all .☺️

[Bonni Hess]

Dear Debbie,, Thank you SO much for your continued special concern, caring, and support for our dear Brittany, and for the helpful shared information and resources for her thus far unexplained seizures. VERY thankfully, Brittany's regularly scheduled every 4-6 months chest/abdominal/pelvic/brain/and spine scans continue to show continued, long term, sustained disease stability with no mets in any of the scanned areas :). However, despite the clear scans and stable disease, Brittany perplexingly continues to have debiliitating extremity numbness, occassional seizure symptoms, and for the past year, increasingly severe abdominal/pelvic/gastro intestinal pain. Although she has undergone many diagnostic tests with several different doctors, they have thus far been unable to diagnose and resolve the cause of her VERY concerning symptoms. The significant unknown is what the long term effects of the Cediranib may be, especially since Brittany is currently, to her Clinical Trial doctor's and our knowledge, the Cediranib patient with the longest sustained disease stability in the World. Additionally, we don't know what the cumulative effect of Brittany's 23+ surgeries/ablations/ radiosurgeries and 3 Clinical Trials during her long 21+ year ASPS battle may be. We do know that this battle has taken a HUGE toll on her body, and that she pays a HUGE price to Live in terms of constant pain and suffering :( Thank you dear Debbie for the shared neurology information and the contact information for Dr. Sorenson which we will pursue and update this thread with the results when we are able. With deepest gratitude for your special caring and sharing, with special caring thoughts for your dear Josh and all of your Family, and with continued Hope, Bonni