katrina on cediranib from U.K

[Bonni Hess]

Dear ASPS Community Friends,
Although Katrina has been out of contact with the Board for awhile due to problems with logging on to the Web site, I have continued to follow her on a personal Facebook blog. Katrina has now asked me to update the Board for her until her time and situation allow her to post an update herself.
Heartbreakingly, after almost two years of lung met stability on the Cediranib Trial in England, Katrina has now been diagnosed with a brain met and a large 6 cm liver met and has therefore been immediately taken off of the Trial. Inexcusably, despite Katrina's repeated requests to her oncologist for a brain MRI, the brain met went undiagnosed until it became symptomatic with severe headache pain and blurred vision. Additionally and equally inexcusably, the oncologist admitted that he saw the liver met on the CT scan in May when it was three Cm., but didn't tell Katrina about it because he "didn't want to jeopardize her participation in the Clinical Trial".... It is extremely difficult to understand this kind of irresponsible medical treatment, and my heart breaks for the difficult situation that Katrina now faces as a result of her oncologist's negligent "care". She is being offered very few treatment options, but is Hoping that some treatment will be found to treat not only her brain met and her liver met, but also her multiple lung mets which include a very large 10 Cm. met located close to her heart. Since Katrina knows how radioresistant ASPS is and how unsuccessful Whole Brain Radiation (WBR) has been for ASPS brain mets, she has wisely refused the WBR radiotherapy which was recommended and offered by her oncologist. Therefore, one of the alternative treatment options being considered for Katrina's brain met is stereotactic radiosurgery depending on the radiologist's assessment of her eligibility for the treatment based on the size and location of the met. Additionally, systemic treatment with Cabozantinib (Cometriq) may be a possible option that will be explored. Hopefully Katrina will be able to receive treatment for her brain, liver, and lung mets very soon. In the meantime, I know that she would deeply appreciate any messages of support and encouragement and any information or advice which anyone on this Board may have to share which may be helpful to her in her search for viable treatment options. If you would like to post a message for her I will share it with her as she truly needs everyone's help and support right now. I will keep the Board updated when there is more information to share, and until Katrina is able to personally post an update.
With special caring thoughts, concern, and healing wishes for Katrina, and continued Hope,
Bonni

[D.ap]

Katrina
Hello. My name is Debbie and I am so sorry we missed the post in August
Please know that we are with you in mind and spirit as you go through your battle with ASPS
Our youngest, Joshua's sister, is your age and my heart, our hearts go out to you. Stay strong

Much love
Debbie

[Amanda]

I am deeply sorry this is happening!
I hope they can remove the brain met an that you can go on that new drug!

I had been hoping that all was going well!

[Bonni Hess]

Dear ASPS Community Friends,
Thankfully, Katrina FINALLY!! had her brain met successfully resected on this Monday, October 7th and was discharged from the hospital the next day on Tuesday and is now at her Home resting and recovering. She still faces many challenges in her courageous battle with multiple large lung mets and a very large liver met, and frustratingly/concerningly there are no current treatment plans for those mets from her oncologists. You can follow her ASPS journey and battle on her Facebook page" Prayers and Support for Katrina Palmer" until she is able to post and participate on this Board herself. I know that your special support and encouragement would be deeply appreciated by her and her family.
With special caring thoughts and continued Hope,
Bonni

[D.ap]

Katrina
Great news of the removal of the brain met
Hope each day brings healing !
Love
Debbie

[Jorge]

Dear ASPS Community Friends,
Thankfully, Katrina FINALLY!! had her brain met successfully resected on this Monday, October 7th and was discharged from the hospital the next day on Tuesday and is now at her Home resting and recovering. She still faces many challenges in her courageous battle with multiple large lung mets and a very large liver met, and frustratingly/concerningly there are no current treatment plans for those mets from her oncologists. You can follow her ASPS journey and battle on her Facebook page" Prayers and Support for Katrina Palmer" until she is able to post and participate on this Board herself. I know that your special support and encouragement would be deeply appreciated by her and her family.
With special caring thoughts and continued Hope,
Bonni

Thank you for the relieved news of succesfully resecting the brain met. It's the wisest choice.
I'm sorry I've missed so many updates in the pass (I used to read in the personal stories section).
For the liver met, I've seen a local ASPS patient here treat it with interventional treatment succesfully. After the treatment, the size of the met keeps as still in the follow up MRI.
I know it's hard for you now, hold tight to hope, you can make it through.

With healing wishes,
Lynette