Brittany on Cediranib trial Phase 1 in Edmonton

[Olga]

Bonni, I am too very happy to hear that MRI ruled out the new met in the liver. It is very surprising for me to see that Dr.Sayer was able to arrange MRI that fast to do this definitive scan - there are long lines for MRI scans in Canada everywhere, may be oil rich province of Alberta has better availability of these scans, but otherwise all types of different scanning is offered first and MRI as a last resort, although it is well known that it the best tool for sarcomas in all locations except lungs (because they are moving). Even in US people report that there is a great resistance from the insurance companies to pay for the MRI as it is much more expensive scan then the CT and ultrasound and people are given the suboptimal scanning all the time - like the CT scan for the sarcoma liver or brain mets...

[Amanda]

Hello Bonnie
YAy what wonderful news!
I am very glad they did the ultra sound! That she will remain on the treatment and that it is going so well! She is a huge insparation to myself many others

I hope that you are feeling better and are starting to feel like your self again after that huge fall..

*Gentle hugs to you my friend*

[Bonni Hess]

Dear Olga and Amanda,
Thank you for your kind words and shared happiness of Brittany's good scan results. We are so deeply grateful for your continued special caring and strengthening support and encouragement. Olga, regarding Dr. Sawyer being able to schedule Brittany for the liver MRI so quickly, I assume that it is because Astra Zeneca ( the sponsoring pharmaceutical company for the Cediranib Clinical Trial) pays for all of the Trial related medical expenses and scans, rather than the Canadian medical system. Since the Clinical Trial protocol requires close monitoring of the disease to determine if and when disease progression occurs, in Brittany's situation with the undetermined liver lesion, a special liver MRI was apparently the only effective scan that could make a definitive diagnosis.
It is certainly extremely frustrating, and I feel inexcusable, that non-Clinical Trial sarcoma patients and others in Canada are denied the proper and most accurate brain and abdominal scans based on the higher cost of MRI's compared to CT scans and, as you noted, in the United States as well based on financial limitations imposed by the insurance companies. It is well known that for ASPS patients at least, brain MRI's are able to detect brain mets at a much smaller size than CT's thus allowing for earlier treatment and a better potential for a successful outcome to the treatment. Additionally, MRI's don't expose the patient to harmful radiation as CT scans do. Hopefully someday patient care will be based on what is best for the patient rather than financial considerations. Take care my friends.
With special caring thoughts and continued Hope,
Bonni

[Ivan]

This is awesome, congratulations! Extremely happy to hear that!

[Fictional]

Hooray! Great news, Brittany and Bonni!

Gotta remember about 'fake out' findings in the liver..

[Arch]

Bonni, this is wonderful news..I'm so happy for you. And thank you so much for letting us know all this, helps us just incase somewhere else it is interpreted as progression and we are kicked off the trial. We should insist and make sure what it really is. You are also lucky to have such a wonderful doctor.

Hope you are also taking care of yourself and recovering well.

Arch

[Bonni Hess]

Dear ASPS Community Friends.
Thankfully I have continued very good news to share following Brittany's Thursday's fifteen month Cediranib Clinical Trial status chest/abdominal/pelvic CT scans in Edmonton which we reviewed and discussed at our appointment with Dr. Sawyer yesterday
(Friday, July 30th). We were VERY relieved and encouraged by the scan results which showed continued stable disease with no new tumors, and that no residual target lesions could be identified!!
Brittany continues to tolerate the 30 mg. dosage despite the ongoing side effects which I have detailed in my previous updates, but in addition to the other side effects, she has recently begun to experience some concerning loss of balance symptoms which Dr. Sawyer confirmed can be a possbile side effect of Cediranib due to the fact that the medication crosses the blood brain barriar and can affect the cerebellum. This is certainly a double edged sword since it is critically important that the Cediranib be able to get into the brain to prevent/shrink brain mets, but because it can enter the brain, it can also cause some side effects. We will continue to closely monitor this new symptom, but are Hoping that it will resolve or not become too debilitating. We would deeply appreciate it if anyone else on this Board who is on the Cediranib treatment could write to let us know if you have experienced loss of balance unrelated to the muscle weakness, which is also a side effect of the medication.
We continue to be profoundly grateful for this promising new medication which has now provided Brittany with fifteen months of stable disease and significant tumor shrinkage, and for the very dedicated care, special caring, and incredible knowledge and great expertise of Dr. Sawyer.
Brittany's next status scans are scheduled for September 23rd with the results appointment on the 24th, and we are holding VERY tight to Hope for continued good news at that time. I will, as always, update this Board as soon as possible after we receive the scan results, or with any other significant information. In the meantime, please take care everyone, enjoy the rest of the summer, and keep in touch and update this Board as you are able.
With special caring thoughts and continued Hope,
Bonni

[DottyW]

Bonni,
Wonderful news! I'm so happy to hear that Brittany continues to have stable disease despite the ever changing side affects. Jordanne has not said anything about loss of balance, but then again she is more concerned with just walking with just her leg brace. It's kind of hard to tell what are the results of the Cediranib and what is the results of nerve damage.
I hope that you are recovering well from your fall without too much pain.
We leave tomorrow for NIH and Jordanne's scans on Monday. I will try to post results as soon as I can after the results on Tuesday. As usual, we are somewhat nervous to hear the results. She has had a few more headaches lately so they will also be doing a CT scan of her head. We have had a virus going around work with a number of people having serious head aches so am just hoping that it's just viral.
The best news is that Jordanne has been able to move her toes a little bit as well as her ankle moving some. This indicates that her nerve is improving. We have not had time to make an appt yet to see the neurologist as we get ready for her trip to NIH. We hope to be able to see her after we get back next week.
Give Brittany a big hug of celebration from us.
God Bless,
Dotty

[Bonni Hess]

Dear Dotty,
Thank you for your very kind response, for sharing Brittany's good scan results with so much happiness and special caring, and for your continued strengthening support and encouragement.
I am so happy and grateful that Jordanne is beginning to regain some movement in her toes and ankle, and that she no longer needs to use her crutches. I am very Hopeful that the damaged nerves will eventually completely heal, and that she may then no longer even need her leg brace. I am sorry that she has been having increased headaches, which certainly could be related to side effects of the Cediranib (Brittany has Cediranib related head aches) , or possibly the virus going around your office which you mentioned. However, I think that it is a good idea to have a brain scan just to be safe, although if a scan is done it should definitely be a brain MRI rather than a brain CT because a CT is not adequate to diagnose ASPS brain mets at the smallest size to ensure the best chance of successful treatment. Have a good trip to NIH and know that my very best wishes and most positive thoughts are with Jordanne and you for VERY good scan results which show no new tumors, continued stable disease, and more tumor shrinkage. Please travel safe, give Jordanne and yourself special hugs from all of us Hesses, and know that we will be holding both of you very close in our hearts and prayers and anxiously awaiting your update as soon as your time allows.
Heart to heart with special caring thoughts and continued Hope,
Bonni

[Bonni Hess]

Dear ASPS Community Friends,
I am very happy and deeply grateful that the very good and encouraging scan results that we received yesterday from Brittany's Thursday's 17 month Cediranib status chest/abdominal/pelvic CT's in Edmonton showed continued stable disease . The radiologist report states that "there are tiny faint residua from the target pulmonary nodules as well as other nodules which are stable as compared to multiple previous examinations. No residua of the pancreatic mass is identified"! The report once again mentions "an abnormality abutting the pleural surface in the right lower lobe which is stable as compared to recent previous examinations." Dr. Sawyer said that he is 99.9% sure that the "abnormality" noted is the scar from Brittany's 2009 lung Cryoablation procedure, and we agree because this "abnormality" has always been seen on the scans and remained unchanged since Brittany's Cryo procedure. We will of course continue to closely monitor it, but it is Hopefully just a benign scar like those seen on Ivan's scans in the areas of his Cryo and laser surgeries. When we asked Dr. Sawyer if Brittany could be considered disease free right now, he said that she "probably is macroscopically, but not microscopically". Although our greatest Hope and wish is that she is completely cured, we know that this is heartbreakingly most likely not the case since we have always known and understood that Cediranib is a treatment to try to stabilize the disease and shrink tumors, but not a cure. However, we are profoundly thankful that the Cediranib has provided 17 months of disease stability and significant tumor shrinkage/disappearance thus far, and we continue to hold VERY tight to Hope that it will continue to do so until a permanent cure can be found. Brittany is scheduled for her three month brain and spinal MRI's in Seattle on October 4th with the results appointment on October 5th. Hopefully I will be able to update this Board with more good news of no new tumors in the brain and spine. In the meantime, please take care everyone and know how deeply grateful we are for your continued special caring, support, and encouragement.
With a heart filled with much happiness, great relief, and continued Hope,
Bonni

[Olga]

Bonni - that's a great news and I am happy for you guys, cediranib could not come in the better time for Brittany. As 'F' said in some situations when there is some met in a really bad location and growing, the benefit of the good working TKI is obvious when it resolves the life threatening situation. May be it works better in the abdominal organs mets, I remember I read that the distribution/accumulation pattern for the drugs varies greatly between the organs and the patients too, and who knows, may be it is able to induce the permanent damage to the mets in the better accessible for it locations.
Could you remind us what dose is Brittany on now? Is the clinical trial in Edmonton over overall and she is continuing to get it or it is still ongoing?

[Ivan]

That's awesome. That's about the only thing I can say, other than Brittany certainly deserves a break like this - probably more than anyone. Bonni, you are doing a great job.

[Arch]

Wonderful news...We are so happy to hear about both Brittany's and Ivan's scan results.

Arch & Sree

[Amanda]

Hello Bonnie
YAY this is great news!!!

[DottyW]

Bonni and Brittany,
Wonderful news! I know how anxious you have been about the length of time Brit has beenon the Cedirinab with the results from past trials. I rejoice with you over Brittany's continued stable disease. I hope that she is continuing to tolerate the effects of this treatment and hope that her tumors will continue to shrink and just plain go away. It is especially great news about her pancreas.
We leave tomorrow morning for NIH. Jordanne has scans on Monday and Tuesday. She seems to be feeling better after having a rough week fighting off some kind of bug. She experienced some pretty severe vomitting which reminded me of Brittany. Each bout was about 3 days apart so we are hoping that it was a combination of a virus and side effects. We will discuss with Dr. Speranza on Monday. She seems to be doing well at the moment.
Give Brittany a big hug from us.
Hope is a powerful gift.
Dotty