Brittany on Cediranib trial Phase 1 in Edmonton

[Bonni Hess]

Dear ASPS Community Friends,
Thankfully we received a VERY special Thanksgiving blessing yesterday on Thanksgiving with the receipt of the finalized radiology report from Brittany's November 18th nineteen month Clinical Trial scans which confirms stable disease wIth no new tumors! In regard to the targeted pulmonary lesions the report states that, "The lesions were depicted on key images from the August 2009. The measured lesions, at that time, laterally in the right middle lobe, centrally in the right middle lobe and right lower lobe centrally have resolved." The report also states "Left upper abdominal masses measured on the August 2009 study are not visible. A 1.7 cm, oblong, hypodense lesion in segment 8 liver consistent with a hemangioma remains stable. No new liver lesion. The pancreas, kidneys, adrenal glands and spleen are normal." We are celebrating this wonderful news with great joy and strengthened Hope, but remain aware of the fact that resistance can eventually be developed to the Cediranib. Brittany's side effects seem to be lessening including her severe mouth sensitivity which previously made it impossible for her to even eat catsup because it would burn her mouth, and now she is able to eat fairly spicy chili! We are Hoping that her body is just adjusting to the effects of the medication, rather than developing a resistance to it. Take care everyone and know that my continued deepest caring and best wishes are with all of you.
With special caring thoughts and continued Hope,
Bonni

[DottyW]

Bonni,
That's wonderful news. We are so happy to hear that Brittany is doing so well and that her side affects are becoming more manageable. I love the fact that these strong young people have continued to live their lives to the fullest despite the things they have to endure. There is always a silver lining and the fact that they do not give in to fear and defeat but keep fighting shows just what quality character is developed when refined by fire.
Give Brittany a big high five!
Dotty

[Olga]

Bonni, there couldn't be a better news to hear for all of us, we are so happy for Brittany!

[wendik]

Fantastic News!!!! We're so happy for you!

Wendy and Matt

[Bonni Hess]

Dear ASPS Community Friends,
We are VERY thankful to begin the New Year with the VERY GOOD NEWS!! results of Brittany's yesterday's three month brain MRI in Seattle which showed no new brain mets . Dr. Rockhill, Brittany's excellent and extremely knowledgeable University of Washington radiation oncologist, said that he had to look back at Brittany's old brain MRI's from 2009 for comparison to even see where the Gamma Knifed brain mets were because they are no longer visible! Brittany was also supposed to have her three month spinal MRI yesterday, but frustratingly there was some miscommunication with the doctor's scan orders by the radiology department so the spinal MRI wasn't done, so we will now postpone scheduling the spinal MRI until Brittany's next brain MRI in April if everything looks alright on her next Thursday's 21 month Clinical Trial status scans in Edmonton. As always, we are very nervous and are having increasing scanaxiety about next week's scans, but are holding VERY tight to Hope that the scan results, which we will discuss with Dr. Sawyer when we meet with him next Friday, will show continued stable disease with no new tumors, and additional shrinkage and disappearance of Brittany's remaining lung mets. I will post an update on the scan results as soon as possible after we receive them. I Hope that everyone is doing well, having a happy and Hope filled beginning to the New Year, and that you will all keep in regular touch with the Board and update as you are able.
With special caring thoughts and continued Hope,
Bonni

[Ivan]

Awesome, Bonni. Congratulations!

[DottyW]

Yea Brittany! Will keep you all in my prayers.
Dotty

[Olga]

Bonni, may be Dr. Rockhill wouldn't mind to write a small article about his experience in consecutive treating few ASPS brain metastases using GammaKnife with the success. It would have been beneficial to document and publish this result because we have unexplainable lost few ASPS patients to a brain mets progression only and it is obviously was a big mistake not to treat their brain mets by the widely available GammaKnife radiosurgery on the smallest possible sizes. Also from Brittany's case is is obvious that the vigilant brain surveillance makes all the difference, and that all the ASPS patients with the known lung mets should have their brain MRI done at least once a year.

[Bonni Hess]

Dear ASPS Community Friends,
"Stable appearances, with no evidence of new metastatic disease or disease recurrence." is the VERY GOOD, relieving, and encouraging conclusion of the radiologist report from Brittany's Thursday's 21 month Cediranib Clinical Trial status chest/abdominal/pelvic CT scans which were done in very snowy and extremely cold (15 degrees below zero!) Edmonton. The report states that "scattered tiny nodular pulmonary opacities remain, unaltered", but Brittany's incredibly knowledgeable Clinical Trial oncologist, Dr. Michael Sawyer, thinks that these mets are thankfully probably dead. We are so deeply grateful for Brittany's continued sustained response to the Cediranib and remain VERY Hopeful that the medication will continue to prevent her disease progression, but we and Dr. Sawyer are also painfully aware that thus far two years is the longest that Cediranib has been effective for other ASPS patients before resistance and progression developed. Brittany's 23 month status scans are scheduled for March 10th, and Hopefully I will be able to upate with continued good news at that time, but in the meantime, we continue to aggressively research and search for an alternative treatment to pursue in the event that resistance to the Cediranib and disease progression eventually heartbreakingly occur. It has been awhile since many of you on the Cediranib and Sutent topic forums have written to update, so I would like to once again strongly encourage all of you to actively participate and share your information which is so critically imporant to everyone following these promising new targeted therapy anti-angiogenic TKI medications. Take care everyone.
With a heart filled with great relief, happiness, gratitude, and continued Hope,
Bonni

[Olga]

Bonni, what a great relief! We are happy for you guys and also that you made it home safe after the extremely long driving in a very dangerous conditions. Some Hwy's in that area were closed due to avalanche danger and pocks slide, it really takes so much dedication to go trough all this way but it really worth it. Can you comment on what are the side effects of the long term cediranib administration, does Brittany see anything new and different from the initial side effects. Does it affect the hair color?

[Bonni Hess]

Dear Olga,
Thank you for sharing the great relief and joy of Brittany's good scan results with so much happiness and special caring. Yes, it was an extremely long, treacherous, and nerve wracking drive to Edmonton and back with freezing temperatures, blizzarding white out conditions, and black ice, but as you said, it is all worth it. We would drive to the end of the Earth to be able to get the medication to stabilize Brittany's disease and to receive good news from her scan results. Regarding your questions about the side effects of Brittany's long term Cediranib use (she remains on the 30 mg. daily dosage after her initial 45 mg. dosage was reduced about three months after starting the medication), the side effects have remained basically the same since she began taking Cediranib 21 months ago with some becoming less severe such as her extreme mouth sensitivity and the periodic severe vomiting episodes, but the chronic diahrrea issue remains constant, and the nausea, painful hand foot syndrome, fatigue, and joint pain are stil significant, but tolerable. Brittany does feel that her memory is becoming increasingly worse which is probably the result of the common side effect of chemo known as "chemo brain". Hopefully this will resolve if and when Brittany discontinues the Cediranib. Brittany has experienced some recent concerning visual perception issues which we are unsure if they are related to the Cediranib or not, but since her recent brain MRI was thankfully clear we don't think that the problem is tumor related. We will continue to closely monitor the symptoms and will schedule her for an opthalmologist appointment to try to determine the cause of the symptoms.The Cediranib has thankfully not affected Brittany's hair color, unlike Sutent which apparently can cause the hair to turn white. However, I think that both 'K' and LCMA found that once they discontinued the Sutent their hair color returned , and in the interim they were able to just dye their hair. I Hope that this information is helpful to everyone, and that the others who are taking Cediranib will also write to update the information about their current side effects and Cediranib treatment status.
With special caring thoughts and continued Hope,
Bonni

[MANIA]

I always have read quietly Brittanys' story till now and I just have to write:
Hurray!!!! and Congrats!!!!! and all the happy people jump up high !!!:):):)
It had too be soooo tough for Brittany and Bony and their family to go through all of this. What a great news, (and confirmed twice:) ).
I hope with all my strength it stays this way for You Brittany, and You have been so brave.
Both of You always write so detailed 0 it is a big treasure for this forum.
It is also co comforting to read Your story.
What a great inspiration and beam of hope into worried hearts of other diagnosed or they relatives.
Go Brittany !

[LCMA]

Fantastic news Bonnie, so happy for your entire family and especially Brittany

[Bonni Hess]

Dear ASPS Community Friends,
VERY happily, thankfully, and relievingly Brittany's Thursday, March 9th twenty three month Cediranib status chest/abdominal/pelvic CT scans in Edmonton showed continued stable disesase with no new tumors and even a slight decrease in the size of two previously stable appearing lung mets which Dr. Sawyer continues to feel are probably dead . The radiologist's impression summary says:
"Slightly or slightly improved appearances as described. No evidence of new metastatic disease or disease recurrence."
All of us, including Dr. Sawyer who is so extremely caring and devoted to his patients and his work, were especially nervous about these scans knowing that two years is unfortunately the longest Cediranib has proven to be effective thus far for ASPS patients before resistance and progression is developed. While we continue to be very encouraged and to hold VERY tight to Hope that Brittany will be able to have a long term sustained Cediranib response and stabilization of her disease, we are painfully aware of the nature of TKI's to eventually become unable to prevent progression, and are continuing to aggressively and relentlessly research and search for other promising new treatment options. Brittany will have her regular three month brain MRI in April in Seattle, and her twenty five month Cediranib status chest/abdominal/pelvic scans are scheduled in Edmonton for May 5th with the results appointment on May 6th. As always, I will keep the Board updated on her Cediranib Trial experience, her side effects, and her scan results, and am very Hopeful that other patients will do the same so that we can all continue to learn from each other which is so critically important in fighting this extremely rare disease. Take care everyone and have a beautiful Springtime which is Hopefully FINALLY on its way!
With a happy heart filled with great relief, thankfulness, and continued Hope,
Bonni

[wendik]

That's FANTASTIC!!!!! I'm SO happy for you all!