Prairie from Nebraska - Dx 2015

[Bonni Hess]

Dear MJ,
Thank you for the updated scan date information. It is unfortunate/frustrating that NIH can't provide Prairie with enough Cediranib to cover the five additional days between her originally scheduled Clinical Trial appointment and scans, but being without the drug for that relatively brief amount of time will probably/Hopefully not cause rebound and disease progression. Several years ago when Brittany needed to discontinue her Cediranib for about a week before and following her outpatient superficial abdominal met surgery to prevent possible hemorrhaging, she thankfully remained stable with no disease progression, and then successfully resumed taking the drug. It is wonderful that dear Prairie is feeling good enough to try out for volleyball, and I will be rooting for her to make the team . Go Prairie, go!! Safe and good travels to NIH for Prairie's re-scheduled August 25th appointment. My very best wishes and greatest Hope travel with you and I will be anxiously awaiting your update on the results of her scans which will Hopefully show stable disease with no new tumors, and that her previous existing mets are shrinking and disappearing.
With special caring thoughts, healing wishes, much love, and continued Hope,
Bonni

[Kat]

Hi MJ,
I seem to remember reading somewhere that even if there is rebound from a brief treatment gap, that it can help as the cancer cells "rev up" and then get the drug again, as they are more active it may hit them harder.

Damian

[Vega343]

Dear friends -
Scans this week gave a little mixed results.
Pelvis - no change (possible scar tissue)
Lungs - tiny growth reported (millimeters)
Brian - small increase in size of one cyst around one tumor

The doctor's will be rescanning brain and lungs next month to determine if these changes are continuing progression, scan variability, or if any growth becomes stable again. They will keep her on the study until they can determine what is going on for sure.
No new tumors.
The team has had one patient that had small progression and then was stable - so we are clearly hoping for that scenario. Thanks for the nice notes, and continued support! Prairie did make the team and is really feeling great.
MJ

[D.ap]

Hi MJ
The increase can be from the read as you well know
The cyst that you talk of. Why that term?

It's great news that Prairie has made the team and is feeling up to being active : )
Is Prairie still on a 5 day schedule?
It's great to hear from you
Love
Debbie

[Bonni Hess]

Dear MJ, Thank you for your thoughtful update. I am very grateful that the scans showed no new tumors, but am sorry for the possible small amount of increased growth of the lung mets and perplexed about the referral to "small increase in size of cyst around one (brain) tumor". Since a cyst is usually a fluid filled lesion, is there an indication that there is fluid surrounding the brain met? Also, are Prairie's scans being compared to only the immediately previous scan, or to the scans from when she first began the Cediranib Trial which is very important to obtain a more accurate determination of the actual amount of increased tumor growth, if any. CONGRATULATIONS!! to dear Prairie for making the volleyball team!! It is so important for her to have positive emotional experiences to keep her immune system strengthening positive attitude strong, and so wonderful that she is feeling good enough to remain physically active . With special hugs, caring thoughts, healing wishes, much love, and continued Hope, Bonni

[Vega343]

Hi friends, thanks for your notes.
P is still on the 15mg 5 days a week dose. The doctors have seen less of a dose be effective so they don't relate that to the growth. They have also had kids off Med for longer time and still had successful treatment so don't think that is the cause either. Basically, it seems either she is responsive or not, and it is still to be determined if she is or isn't.
He just wasn't sure about the brain met, more to come on next scans 20sep2016.
Thanks for your support, will keep the site updates then!
Mj

[Bonni Hess]

Dear MJ, Thank you for the additional shared information. Brittany did not begin to experience shrinkage and disappearance of her innumerous and widely disseminated mets for a few months into her Cediranib treatment, and the most significant response did not begin until after the resection of her small superficial abdominal met which was not responding to the Cediranib and Dr. Sawyer described it as "not being a team player" so it needed to be surgically removed to lessen the body's tumor burden and better enable the Cediranib to be effective. I continue to wonder whether it would be advisable to resect or Gamma Knife dear Prairie's multiple brain mets to try to reduce tumor burden, and then Hopefully she would have a more successful/significant response to the Cediranib? Depending on the outcome of her next scans, perhaps this is a question/issue that you should pursue and discuss with her doctors. We have found in our now 15 years of ASPS experience that reducing tumor burden as much as possible is critically important in fighting this disease and providing the best opportunity for a successful systemic treatment outcome. In the meantime, it is encouraging that precious Prairie does not appear to have any new mets so Hopefully the Cediranib is working to stabilize progression of her disease as was the case with Brittany during the first couple of months of her Cediranib treatment following her pre-Cediranib devaststing very rapid and widely disseminated disease progression. I Hope that dear Prairie has a very good and happy beginning to her new school year, and I will be holding very tight to Hope for very good news from her upcoming September 20th scans. Heart to heart with deepest caring, healing wishes, much love, and continued Hope, Bonni

[Olga]

Some info to add to Bonni post - Brittany was on a Phase 1 trial when the pharmacology is studied and the surgery is allowed. Prairie is on a Phase 2 or 3 clinical trial and they might not allow any surgery while on it. But worth discussing anyways.

[Vega343]

Thanks to you Bonnie and Olga - will inquire.
Her biggest mets at this time are in her lungs - 4 x 3 cm and next biggest 2.5 x 2 cm. I will ask about the same concept of cryablation or treatment of those too, and then trying the treatment again.

[Bonni Hess]

Dear MJ, I am holding very tight to Hope that precious Prairie's September 20th scans will show shrinkage of her relatively large lung mets as well as her multiple brain mets, but if this has not occurred, I strongly encourage you to discuss the possibility of Cryoablation of the largest most concerning lung mets and Gamma Knife, if not resection if possible, of the brain mets. As per Olga's insightful post, I understand that since Prairie is on a Phase 2 or 3 Clinical Trial as opposed to Brittany's Phase 1 Trial, the Trial protocol may not allow surgical or any other treatment interventions while Prairie is on the Trial, but it would definitely be worth at least discussing with the Clinical Trial doctors to explore the possibility of an exception to the protocol being made if necessary to reduce tumor burden. In the meantime, take care, enjoy a good beginning to Fall, travel safe to NIH, and know that my most special thoughts and very best wishes will be with dear Prairie, you, and your family for VERY good scan results on the 20th. Reaching out heart to heart to share my deepest caring, special thoughts, healing wishes, much love, and continued Hope, Bonni

[Vega343]

Friends!
Prairie has stable scans and no new tumors!
She had brain MRI - stable. Chest CT - stable. Weight and height about the same.

Now, this was 28 days from last scan (Aug). Growth was detected in August after a lapse of 60 days between scans. Still, very encouraging.
Dr said he has seen this with one other ped Cediranib patient, and that patient went on to experience stability for a few years. He agreed with me that is could even be necrosis of the tumors showing up as enlarged.

Full scan schedule 18October - brain, chest, and pelvis.

[D.ap]

Wonderful news MJ!
Hugs to all
Love
Debbie

[Bonni Hess]

Thank you for sharing this VERY good and encouraging news dear MJ I Hope, as I know that you do too, that the October 18th scan results will show stable disease as well as shrinkage of the brain and chest mets. In the meantime take joy in the VERY good scan results showing disease stability, let Hope continue to lead you through each day, and enjoy a beautiful Fall. Sharing your special joy and reaching out to embrace you and precious Prairie with happy hugs, healing wishes, much love, and continued Hope, Bonni

[Vega343]

Dear ASPS friends -
Late reporting October scan results:
Lungs: Very slight growth overall
Brain: stable
Pelvis: Stable

The results essentially showed very slight definite growth in lungs since starting the Cediranib trial in March. They review her story overall, comparing when she started in March to Oct and in between. Her growth is under 10% all together, they require it to be 20% or over to show it is not effective and that would remove her from the study. Of course, she hasn't shown shrinkage either - so even though it's been several months it's really hard to tell what's going on. this is consistant with other patients, as it is usually so slow it's hard to know.
Prior to her starting the study in March 2016, we were seeing definite growth over time in lungs and brain, so I think we can conclude this has significantly slowed it. We are grateful to remain on course and continue to send the scans and reports to MSK for evaluation as we have them as our primary treatment advisers.
She does get diarrhea a couple times a week - and it gets better with the pills NIH gives her. She is also on an appetite med (5ml of cyproheptadine 2 x a day), and getting her to eat remains a struggle. She has a constant unchanged pain in her pelvis that could be scar tissue or regrowth - nobody knows. It is reportedly mild, but she is always putting pressure there.
I should add we continue with daily probiotic, daily muti vitamin, and weekly chiropractor visits - I think the combination of helps her with energy and staying well (although I'm not which one or why).
Other than that, life is relativity normal for her. She goes to school everyday we are in town; in chorus, band, and planning volleyball again in the new year. She loves hanging out with her friends, making musicly videos and playing games. Since her brother is only 4 years old, her friends are where she goes for entertainment - they are so kind to her. She really has no other symptoms which is unbelievable and allows us to forget about this crazy illness for short time periods. NIH has really been great at hosting us and dealing with her needle fears once a month on our visits. She dressed up as her favorite food for Halloween - bacon!
November visit was just labs and physical exam - nothing out of the ordinary to report there. We will be back at NIH on 13Dec for full scan regime and are hopeful for good news. Otherwise - back to MSK to guide us on next treatment options.
Love to all of you - I hope everyone had a good thanksgiving with lots to be so grateful for.
MJ

[Olga]

hi MJ, thank you for letting us know. As I found in your previous posts, the biggest lung mets were 4 x 3 cm and 2.5 x 2 cm. 10% would be 4 mm and 2.5 mm? Is this the overall growth in 6-7 months? Or she had about 10% growth every month? What are the absolute sizes of her biggest index mets?
With ASPS the general rules of RECIST should not be applied as its natural speed of growth is usually less than 20%. It is better to know the patient's own natural speed of growth, when not under any treatment and few months after any major surgical interventions (the healing factors could increase the speed of growth a bit immediately after the intervention and it usually stabilizes by itself later).