Brittany on Cediranib trial Phase 1 in Edmonton

[DottyW]

Bonni,
Jordanne and I are very excited to hear Brittany's good news. Brittany can be the trailblazer for extending the time of Cediranib response. Go Brit! Jordanne has also had some extended time with less severe side affects and more energy. But the last week or two the diarhea is back and she is experiencing some other pain. She will see her oncologist on Friday and talk about the results of her last scans.
I am praising the Lord for you and Brittany and the continued good news for your family. Brittany is an inspiration to Jordanne and so many other young patients.
Happy belated Mother's day,
Dotty

[Bonni Hess]

Dear Dotty,
Thank you for sharing the happiness and continued Hope of Brittany's last week's good scan results with so much special joy and caring. I am grateful that Jordanne had a break from her severe Cediranib side effects, but am sorry that the diarrhea has now returned and that she is having some other pain. Has she been able to maintain her weight or regain some of it? It is such a terrble roller coaster of ups and downs and my heart breaks for all that our precious daughters have to suffer and endure in their courageous battles. Did Jordanne receive the results of her last scans while she was at NIH, or does she have to wait until Friday to review and discuss them with her local oncologist? My very best wishes and greatest Hope are with Jordanne and your family for scan results that show continued stable disease and more tumor shrinkage/disappearance, and I will be anxiously awaiting your update on the outcome of her Friday oncologist appointment. In the meantime, please take care, tell Jordanne "HELLO ", and have a good rest of the week.
Heart to heart with special caring thoughts, healing wishes for Jordanne, and continued Hope,
Bonni

[Bonni Hess]

Dear ASPS Community Friends,
Our 4th of July celebration and immense joy continue with the VERY GOOD NEWS!! scan results that we gratefully received yesterday from Brittany's 4th of July 26+month Cediranib Clinical Trial chest/abdominal/pelvic CT scans in Edmonton. VERY thankfully the scans showed continued disease stability with NO NEW TUMORS!! . Despite being extremely busy covering for three other vacationing oncologists, our wonderful and extremely dedicated Dr. Sawyer made the time and arrangements to personally take us to the radiologist's room to review Brittany's July 4th scans and to compare them with the scans from when Brittany started the Cediranib medication in April 2009. It is truly incredible and brought tears to my eyes to see the difference between the April 2009 scans which show countless tumors disseminated throughout both of Brittany's lungs and several of her abdominal organs, and the July 4th scans in which nothing remains visible in any of the abdominal organs and only three spots are visible in the lungs which Dr. Sawyer thinks are probably residual scar/necrotic tissue from previous lung ablations. Additionally, with huge relief, we also received VERY GOOD NEWS!! from Brittany's last week's emergency brain and spinal MRI's which were done in Seattle since Brittany was experiencing some increasing concerning headaches. Again, VERY thankfully, the scans showed NO NEW TUMORS!! and no sign of metastatic disease progression in either the brain or spine, so we think that the headaches are probably just related to side effects from the Cediranib or some other benign cause.
We are profoundly grateful for the 26+ months of disease stability and dramatic tumor shrinkage/disappearance that the Cediranib has provided, and we continue to hold VERY tight to Hope for continued stable disease and healing, but we are also painfully aware that given the nature of TKI treatments to eventually lose effectiveness, Brittany may develop resistance to the Cediranib at any time, so we continue our constant search and research to find the next best systemic treatment to pursue if and when disease progression heartbreakingly occurs. Brittany's next Clinical Trial status scans will be at the end of August and I will, as always, update the Board with the results as soon as I am able.
Please take care everyone, have a wonderful and beautiful summer, keep in touch with the Board, and know that my continued most caring thoughts and very best wishes are with all of you.
With a heart filled with great relief, much happiness, and continued Hope,
Bonni

[Olga]

Bonni - we are so happy for Brittany, she suffered so much from having to go trough so many surgeries and ablations in order to be able to survive long enough to get her chance with cediranib...It is a miracle drug for her.
And thank you for your continued support toward the sharing the first hand information with the ASPS community. I am always impressed that you makes this very important info available to all the patients as fast as you get the results. I understand that it is a joy to share the good news, but information wise there is no "bad" or "good" info, we need to know everything and appreciate every bit of it.

[Bonni Hess]

Thank you for your very kind words Olga. Of course it is always good to be able to share good news, but as you said, ALL anecdotal information whether it is good news or bad news needs to be shared so that people have as much up to date information as possible on which to base treatment decisions. We all need to know which treatments have proven to be effective for some patients, and which ones unfortunately have not so that valuable time is not wasted on undergoing treatments which may offer little to no promise for ASPS patients, and/or which may have dangerous risks or side effects. Hopefully everyone on this Board will actively participate in sharing the results of their treatment experiences and results whether good or bad so that we can all learn from each other as we continue our shared battles with this extremely rare disease.
With special caring thoughts and continued Hope,
Bonni

[Ivan]

[Amanda]

Bonnie i am so happy!!!
How is she feeling now from taking the drug?
Maybe an i know i am a dreamer at times but maybe if she does go off they maybe dead in her now right? Has the doctors said that maybe a possibility? I pray yes and iam so happy everyone especialy Brittany who has been at war with this evil cancer for a long time and is now kicking its rump

[DottyW]

Bonni,
Jordanne and I both send our love and excitement about Brittany's latest scans. It is just wonderful to hear that she continues to do so well on this drug. I echo Amanda's sentiments that maybe this will have killed off all trace of this disease in her body. I believe strongly in miraculous healing and pray that for Brittany as well as Jordanne and the rest of these strong, courageous people who suffer from this disease.
Have a wonderful summer. I hope this news just increased your ability to celebrate life every moment.
Blessings to your family,
Dotty

[Bonni Hess]

Dear ASPS Community Friends,
We just returned late last night from Brittany's 28 month Cediranib status Clinical Trial abdominal/pelvic CT scans in Edmonton. Dr. Sawyer was out of town for a conference and the written radiology report was not yet available, but the oncologist who is covering for Dr. Sawyer in his absence visually reviewed Brittany's scans and said that everything looks stable. We are of course very happy about this very encouraging news and very relieved that there don't appear to be any new tumors, but we must remain cautiously optimistic until Dr. Sawyer personally reviews the scans and we receive the finalized radiologist report which will Hopefully be on Tuesday or Wednesday. I will update the Board when we receive the final report which will Hopefully confirm continued stable disease and no new tumors. In the meantime, please take care everyone, have a very good and beautiful beginning to this new month of September, and keep in touch with the Board as you are able.
With cautiously optimistic great joy and relief, special caring thoughts, and continued Hope,
Bonni

[Amanda]

Dear bonnie,
I am so happy that she is still doing so well on the trial and i hope with all my heart that she will remain stable!
I have a feeling she is still stable though she has been for a long time now! YAY!!!! )

[Bonni Hess]

Dear ASPS Community Friends,
The finalized radiologist report which we have now received from Dr. Sawyer happily confirms that Brittany's last Thursday's 28 month Cediranib Trial status chest/abdominal/pelvic CT scans thankfully show continued stable disease. The conclusion of the report states "Stable findings. No adverse features since the previous study." We continue to be deeply grateful for the 28 months of disease stability with no new tumors and the significant shrinkage/disappearance of Brittany's previously innumerous and widely disseminated mets that the Cediranib has provided. We are holding VERY tight to Hope for a continued, sustained, and long term response to the medication, but we also know that resistance, rebound, and progression may heartbreakingly develop at any time with this unpredictable disease, so our scanning vigilance, research, networking, and search for promising alternative treatment options if needed continues. Please take care everyone and know how very much your continued strengthening support and encouragement is valued and appreciated.
With a heart filled with special joy and relief, caring thoughts, and continued Hope,
Bonni

[Olga]

Bonni, this is just awesome news for you guys and for Brittany, she suffered so much with ASPS...Can you comment please if there are any changes in her body reaction now to the continuous cediranib intake versus in the beginning.

[Amanda]

Bonnie!!! YAY!!!
I am so happy!!! News like this realy makes a huge difference!
I wanted to ask is there others that are also stable?

[Bonni Hess]

Dear Olga and Amanda,
Thank you for your very kind responses and for sharing the joy of Brittany's good scan results with so much special happiness and caring. Regarding your question Olga about "any changes in her body reaction now to the continuous cediranib intake versus in the beginning", some of the side effects do seem to be lessening somewhat with Brittany thankfully not having had a severe vomiting episode for several months, a reduction in her mouth sensitivity (she can actually tolerate some spicy foods like salsa now!), and not as severe hand and foot syndrome and joint pain, but the chronic diarrhea, nausea, fatigue, headaches, insomnia, and intolerance to even small amounts of alcohol continue. Her blood pressure remains normal and stable, her blood work continues to be fine with her Cediranib caused hypothyroidism (low thyroid) normalized with oral thyroid supplements, and her reduced appetite increased, her nausea reduced, and her weight loss stabilized with the use of medical marijuana. Despite the debilitating side effects of the Cediranib and severe chronic spinal pain from her two major spinal tumor resections three years ago, Brittany continues to remain very active Living her Life with great joy, passion, purpose, and determination.
Regarding your question Amanda about "is there others that are also stable?, Brittany was the only ASPS patient in the Edmonton Cross Cancer Institute Clinical Trial. The rest of the Trial patients had several different types of cancer. There is apparently now only one other patient who is still remaining on the Cediranib Trial in Edmonton. He has a different type of cancer and I think that he has had 18 months of sustained disease stability and is still receiving and tolerating the initial 45 mg. dose. I continue to wonder if the higher 45 mg. dosage, which Brittany was on for the first couple of months of the Trial before reducing to 30 mg. due to continued severe vomiting episodes, may be a factor in the patient having a longer sustained Cediranib response. The NIH CediranibTrial started patients at 30 mg. instead of 45 mg., and the patients who I have followed unfortunately seem to have had less significant tumor shrinkage and shorter periods of stable disease before progression occurred. This is of course only my personal observation and theory, but one which I would like to see addressed and evaluated to determine if initial dosage is a relevant factor.
Because of the discouraging lack of Board participation and updates, I don't know the status of any of the other ASPS patients who may still be participating in the NIH Cediranib Clinical Trial. This shared anecdotal treatment information is critically important and invaluable to all of us in the ASPS Community, and I strongly urge EVERYONE to more actively participate on the Board and update and share their treatment experiences and results. This difficult battle with this very challenging disease cannot be won alone. We all need to communicate with each other and cooperatively work together!
I have some questions/issues regarding statements made and information which was recently presented by former Board member 'F' on her ASPS Facebook site stating that "Met drugs have the potential to inhibit new mets (VEGF's don't)." Since Brittany has thankfully now had 28 months of disease stability with no new mets since beginning Cediranib, it would certainly seem to indicate that VEGF medications like Cediranib CAN/DO inhibit new mets, as well as shrinking/destroying them. Another statement made by 'F' is that "VEGF inhibitors can kill the tumor center, but not the tumor rim - where the actively growing stem cells are growing.", but I again question the accuracy of this statement since the majority of Brittany's multiple and widely disseminated mets appear to have completely disappeared and are no longer visible on the scans. Dr. Sawyer thinks that the couple of remaining visible lesions in her lungs are probably dead tumor tissue. I will discuss these questions with Dr. Sawyer at Brittany's next appointment on November 4th, but in the meantime I was wondering Olga if you have any information/data about these two issues which might help clarify, support/prove, or contradict/disprove 'F''s allegations that "VEGF's don't inhibit new mets" and that ""VEGF inhibitors can kill the tumor center, but not the tumor."
As always, there are so many questions and unknowns with this poorly understood and unpredictable disease, and so few definitve answers, but our relentless search goes on.
With special caring thoughts and continued Hope,
Bonni

[Amanda]

Hello Bonnie
I miss the others also and I hope they alsopost back soon! I am worried about Sree and the others no word
Is any one talking to them off the forums?