Brittany on Cediranib trial Phase 1 in Edmonton

[Olga]

Awesome news, I am so glad for Brittany. Bonni, I always wanted to ask about the lung nodules Brittany had that were ablated by the cryo and RFA - does Dr.Sawyer and his radiologist recognize them as an ablated nodules (necrotic and slowly dissolving) or they consider them unknown for the clinical trial purpose and therefore they are included in the number of the mets they measure from scan to scan? If they count them as possible real mets (versus nectoric nodules post ablation - they probably look the same?), there could be some confusion with the results as they keep resolving during the years after the ablation and their dissolving could look like a clinical trial continued response?

[equezada]

This is great and inspiring news, I am going for my 6 month scans this Monday and Tuesday at the NIH hoping to keep the good news comming, thanks for being so strong Brittany.
Eric

[DottyW]

Great news for Brittany and you, Bonni! I always hold out the hope to you that Brit will be the first to go longer. She is one strong determined young woman who seems to always do things a little differently, so why not this?
Keeping that stubborn and optimistic spirit is a great benefit to her healing. Every day is one day closer to a cure.
You're all in my prayers,
Dotty

[Amanda]

Hi Bonnie
YAY!!! I am so happy this is wonderful!!

[Bonni Hess]

Olga, Jim here responding to your question regarding previously ablated tumors. When Brittany started the clinical trial, 3 lung tumors, all about 1 cm. were selected for tracking. These 3 were definitely tumors that had not been ablated prior. When we initially reviewed the scans, we pointed out which tumors had been ablated. Those ablated with cryo looked a little different than others so are watched, but not normally commented on other than saying they appear unchanged from scan to scan. The RFA that was done in her right lower lobe left a rather large mass of scar tissue, about 3.5 cm. and again, this is commented on by the radiologist, but not tracked. Several smaller tumors showed up in the intitial scans also, but seem to have disappeared. The radiologist, as they are different almost everytime, cannot comment anymore on the tumors they were tracking as they have disappeared, so instead comments on the ablated areas and there does seem to be shrinkage in them as well. The RFA treated tumor in her liver is always noted and remains unchanged. The pancreas, duodendem, and spleen tumors are no longer visable.

[Bonni Hess]

Dear ASPS Community Friends,
I Hope that Jim's explanation helps to answer your very good question regarding Brittany's ablated lung mets Olga, and to clarify that the Clinical Trial response that has been observed and documented is shrinkage and disappearance of three non-ablated lung mets which were targeted to be followed by the Clinical Trial from the beginning of the Trial, in addition to the pancreatic, spleen, duodenum, and small bowel intussusception mets.
Thank you everyone for sharing the good news from Brittany's scan results with so much special joy, kindness, caring, and encouragement. We are so deeply grateful for all of your special friendship, and for this Board which provides a forum for sharing invaluable information and strengthening support with each other as we all continue together on this challenging journey to healing.
With deepest gratitude, special caring thoughts, and continued Hope,
Bonni

[Bonni Hess]

Dear ASPS Community Friends,
Today we CELEBRATE!! Brittany's Happy 29th Birthday with additional great joy and strengthened Hope from the very good and encouraging results of her yesterday's three month brain MRI and six month spinal MRI which were done in Seattle at the University of Washington. Since the Clinical Trial in Edmonton only follows Brittany with chest/abdominal/pelvic CT scans for the purpose of the study, and given her history of brain and spinal mets, we continue to monitor her with the other scans here in Seattle to ensure that no new mets are missed. Thankfully, both the brain and spine continue to appear to be clear with no evidence of new mets. Brittany's two year Cediranib status chest/abdominal/pelvic CT scans and results appointment are scheduled in Edmonton on May 5th and 6th. In the meantime, we are CELEBRATING!! the precious gift of Brittany's incredible 29 years of Life, and holding VERY tight to Hope that the coming year will bring continued stable disease, a permanent cure for this insidious disease, and complete healing.
With a happy heart and continued Hope,
Bonni

[Amanda]

Happy birthday Brittany!!!

Wonderful news all the way around on tests! YAY!

[Ivan]

Bonni, please wish Brittany a belated happy birthday from me! I am super happy with the continued good news. I suppose out of all known cases, Brittany has the best known cediranib response

[Bonni Hess]

Dear ASPS Community Friends,
I am so very thankful to be able to report continued GOOD NEWS!! from Brittany's twenty four and half month Cediranib Clinical Trial status chest/pelvic/abdominal CT scans which were done in Edmonton on Thursday (May 5th), and for which we received the results with great joy and relief yesterday (May 6th) during Brittany's Clinic appointment with Dr. Sawyer. In addition to continued stable disease with no new tumors, Dr Sawyer said that a suspected remaining lung met located deep in Brittany's lung near her spine now shows increased shrinkage. Dr. Sawyer and the radiologists have been following this deeply located lesion but had not been sure if it was actually a tumor or not, but now that it is shrinking the assumption is that it is tumor. He said that he thinks Brittany is now the ASPS patient with the longest sustained and continuing Cediranib response. Given all of the anecdotal and documented data currently available, we are all painfully aware that resistance to the medication will probably eventually develop, but for now we are celebrating these very good and encouraging scan results and holding VERY tight to Hope for a continued successful response, while continuing our relentless research and search for an alternative treatment if/when resistance and progression heartbreakingly occur.
I have certainly received a most special Mother's day gift with these wonderful scan results, and am looking so forward to sharing a very happy Mother's Day together with our precious Brittany celebrating GOOD NEWS!! and Life. My happiest wishes are with all of the ASPS Community mothers for a beautiful day shared together with your dear children. Take care everyone.
With a happy heart, special caring thoughts, and continued Hope,
Bonni

[Olga]

That's an awesome news! I am wondering if the low tumor load and resection of that resistant subcutaneous met contributed to this sustained response, but who knows. The response is terrific by all means!

[Ivan]

Nice

What macroscopic disease remains in Brittany's body other than the spinal tumor? I'm hoping that perhaps everything she can be NED soon.

[Amanda]

WoW!!! YAY!!!
This is the best mothers day gift

I have a question... If there is only one tumor left that they can find in her whole body an it is small cant they take it out and then if she has nothing else maybe go off the drug and be NED? If it has killed the big things I would think the lil things aregone also right?

I am so happy!!!

[Ivan]

WoW!!! YAY!!!
This is the best mothers day gift

I have a question... If there is only one tumor left that they can find in her whole body an it is small cant they take it out and then if she has nothing else maybe go off the drug and be NED? If it has killed the big things I would think the lil things aregone also right?

I am so happy!!!

It's not known whether the other tumors are gone (hopefully) or just shrunk to a tiny size and not detectable. I think the rationale would be to stay on the drug as long as everything is good, unless the side effects get so bad that Brittany can't handle them anymore.

I think this one tumor might be in a tricky location, so maybe it's nice to just let it sit there unless it starts doing anything - as long as there is no risk of it invading something rapidly.

[Bonni Hess]

Dear Olga, Ivan, and Amanda,
Thank you for your very kind responses and shared joy of Brittany's good scan results. Regarding your thoughts Olga on Brittany's two year+ sustained response, as you said no one really knows what has contributed to it. Personally, and based on my almost ten years of ASPS research, experience, and patient's anecdotal experiences observations, I do continue to strongly believe that it is very important to begin any systemic treatment with the lowest possible tumor burden, and with the primary tumor having been resected or at least treated with ablation or radiosurgery to shrink/destroy it if at all possible to help strengthen the immune system and enable it to better fight the disease. However, at the time that Brittany began her Cediranib Clinical Trial in April 2009 she had been experiencing rapid and widely disseminated disease progression including several brain mets which were successfully treated/destroyed with Gamma Knife just prior to her beginning the Clinical Trial, and she had multiple small mets in her lungs, pancreas, small bowel intussuseption, duodenum, and a subcutaneous abdominal met. Although she had multiple mets, perhaps because they were relatively small Brittany had greater shrinkage of her mets and a more sustained response than those patients who began the Trial with large primary tumors and/or large mets and a large overall tumor load. Another thing that I am wondering about is whether or not Paul Mavers, Clare Clarke, and Brittany having all started Cediranib on an initial higher 45 mg. dosage rather than the 30 mg. dosage that is prescribed for patients on the NIH Cediranib Trial may be a contributing factor to longer term stabilization of the disease. As with everything else with this poorly understood and unpredictable disease, there are too many unknowns, so many questions, and too few defintive answers.
Regarding your question Ivan about how much macroscopic disease remains in Brittany's body other than the shrinking deeply located lung met near her spine, we are still unsure since there appear to be a few small spots in her lungs which have remained unchanged for the past two years on the chest CT's, but Dr. Sawyer is fairly confident that they are probably dead. However, Dr. Sawyer has told us that Brittany may be macroscopically disease free, but unfortunately probably not microscopically disease free which leads me to your question Amanda regarding the possibility of Brittany discontinuing the Cediranib. As Ivan has said, "It's not known whether the other tumors are gone or just shrunk to a tiny size and not detectable", so as long as Brittany continues having stable disease with no new tumors and is able to tolerate the medication, she will probably remain on the Cediranib because we don't want to rock the boat or take any chances of rebound and progression by naiively/erroneously assuming that she is NED just because the scans appear clear.
One thing that we have noticed is that Brittany's negative side effects seem to be lessening including her previous chronic diahrrea, her mouth sensitivity, and her very painful hand and foot syndrome. As grateful as we are that Brittany is not suffering such severe and debilitating side effects, we are of course concerned that this may be an indication that her body is developing an immunity to the medication, and ultimately possibly a resistance to it. However, Dr. Sawyer said that her body may just be adjusting to the Cediranib, and it may not have any impact on the effectiveness of it since there may be no correlation between the two. Hopefully this is the case, but I guess that only time will tell. One of the remaining chronic side effects that Brittany has is the nausea and vomiting, and she was heartbreakingly just hospitalized two weeks ago for another sudden onset episode of severe and uncontrollable vomiting which required the administration of IV anti nausea meds and rehydration for three days in the hospital. I will continue to keep the Board updated on Brittany's Cediranib experience and results. In the meantime, please take care everyone and know how deeply grateful we are for your continued special caring and strengthening support and encouragement.
With deepest gratitude, special caring thoughts, and continued Hope,
Bonni