Prairie from Nebraska - Dx 2015

[Vega343]

Dear friends,
Just a quick update that our status is largely the same. The December scans showed mild growth of prairies lung (in numerous) and brain mets. All brain mets are under 5 mm, there are 6 now. Nothing residual or new in her pelvis.
We are planning to start the ceridinib clinical trial out of NIH when she is eligible by body mass, she has to put on 1-3 more pounds and we should be in. I am posting from a hotel room as we are leaving on her make a wish trip tomorrow; to Orlando for a Disney cruise! Make a wish has been amazing and the timing is great, since she isn't on treatment yet she feels 100%. And, what a great scenario to gain some weight.
We have been having monthly scans of pelvis (MRI, with and without Iv contrast & oral contrast), lungs (ct with and without) and brain (with and without) since our first scans in sep/October. Now would be the time for January scans, but we are hoping she gains the weight on this trip and we can do Jan/February scans at NIH when we enter the study.
Hope everyone was able to enjoy the holidays, I know we treasured every minute!
Will stay in touch, thanks Bonnie for the poke.
Mj

[Bonni Hess]

Dear MJ, It is so good to hear from you and I am so appreciative of your thoughtful update. I am so happy that precious Prairie is feeling "100%" and that she is going on a Disney Cruise The Make a Wish Foundation is an incredible organization that also made possible for Brittany a wonderful trip to Disney World in Orlando not long after she was diagnosed in 2001.
I am very sorry that dear Prairie's December scans showed increased growth in her lung and brain mets as well as a new brain met, and I have some questions that I would like to address and discuss about the lung and brain mets after you return from your cruise and before Prairie begins the NIH Cediranib Trial. In the meantime, I Hope that she, you, and your family will be able to take a well deserved and much needed vacation from ASPS, doctors, scans, worry, and stress, and pack LOTS of shared together tropical beauty, sunshine, surf, fun, good times, good food, wonderful new experiences, happiness, smiles, laughter, magical moments, and treasured happy memories into your trip BON VOYAGE, smooth cruising, and safe travels best wishes, happy hugs and thoughts, lots of love, and continued Hope, Bonni

[D.ap]

Mj, Prairie and family ,

Safe travels and hugs to all.
What a wonderful present

Much love
Debbie and family

[Kat]

Dear MJ,
I'm so happy that you will get to enjoy the cruise, Annika would love it, so I'm sure that Priarie will to.

Damian

[Vega343]

Thanks all for the good wishes - we had a wonderful make-a-wish trip in January!
As far as medical - our last scans were on 12Feb. Prairie remains asymptomatic - loving life and little girl friendships. Her primary tumor was 8x7cm in her pelvis and resected with no margins in October 2015 - that has been our only treatment so far.
Lung CT: Not much change. Still undetermined amount of lung mets - largest is 3x4cm.
Pelvic MRI: No tumors
Brain MRI: Now up to 8 mets - largest is 6x7mm.

We have been spending the last few months trying to gain weight and grow to meet requirements for Ceridinib trial out of NIH - she is finally there. We have plans to start the trial next week, with first drug administration on Friday March 4th. Scary, but have to start somewhere.
We considered gamma knife for brain mets first, but all the doctors have decided it's best to get her on the study ASAP instead of waiting the required 30 days post gamma knife treatment. So here we go....

Olga - should I start a new thread in the ceridinib section?

Thanks- MJ

[Bonni Hess]

Dear MJ,
Thank you for so thoughtfully updating the Board in the midst of all that you are going through and your busy preparations for dear Prairie to begin the Cediranib Trial on March 4th. Will you be traveling to Maryland for the Trial? As I have expressed to you in my private message communications with you, based on our extensive personal experience with Brittany's brain mets and my numerous years of anecdotal ASPS patient observations, I continue to have concerns about Prairie's growing and increasing number of brain mets not being resected or Gamma Knifed ASAP and prior to her beginning the Cediranib Trial, especially since Cediranib can pose dangerous risks of cerebral hemorrhage with the presence of untreated/unresolved active brain mets. However, I respect your decision to move forward with the doctors' recommendations, and I am Hoping that the doctors are making the most appropriate, best, and safest treatment recommendations for dear Prairie based on their medical expertise and experience with ASPS brain mets as well as documented data on which they are basing their treatment advice. I am very grateful that Prairie remains asymptomatic with no headache, muscle weakness, or vision symptoms from her numerous brain mets. I know what a very difficult and frightening time this is for you and your family dear MJ, but I am grateful for the Hope that Cediranib is providing for you, and my VERY best wishes and greatest Hope are with precious Prairie for a VERY successful response to the Cediranib, stabilization of her disease, and significant shrinkage and disappearance of her brain mets and lung mets. I Hope too that she is able to tolerate the side effects of the Cediranib, maintain her weight, and continue to enjoy "loving Life and her little girl friendships" which she is SO deserving of.
Olga will probably move your updates to the Cedranib topic so that Board members can follow dear Prairie's Cediranib experience and results there. Take care dear Mary Jo, travel safe to begin the Trial, keep in touch as you are able, and feel the embrace of my special hugs, deepest caring, healing wishes for precious Prairie, my love, and continued Hope,
Bonni

[Vega343]

Hi all, sorry for the confusion. It is CEDIRANIB, I mis spelled. We will need to visit the NIH in Bethesda, MD once a month to begin.
They are starting her on 15mg every day, beginning this Friday 3-4-2016.
Scans are every 8 weeks there, and I understand we can go off the trial for a treatment and get back on 30 days after treatment.
Clearly, if this doesn't work, we will need to try something else, the intent of the study is to make you better.
It's the same study for cediranib that has been open since 2009... It is taking many years to get enough kids to complete (they still need 3-4 more kids).

[Bonni Hess]

Dear MJ, Thank you for finding the time to correctly clarify that Prairie will be participating in the CEDIRANIB Trial instead of the similarly spelled Ceritinib Trial. Thank you too for the additional shared treatment regimen information. I assume that the 15 mg. daily dosage is based on a pediatric dose because of Prairie's young age and low weight since the usual adult protocol dose is 30 mg. per day. Brittany began her Cediranib Trial at a 45 mg. daily dose but it was reduced to 30 mg. per day after about four months because of the very severe and intolerable side effects of the toxic higher dose. My most positive thoughts and very best wishes are with dear Prairie for a VERY successful response to her Cediranib treatment and tolerable side effects from the drug, and I will.be holding her and your family very close in my heart. Travel safe to and from NIH in Maryland and with the bright light of Hope guiding you on your journey.. With special caring thoughts, healing wishes for precious Prairie, love, and continued Hope, Bonni

[Vega343]

Cediranib trial for kids, NIH USA 15mg / day
Prairie B, 9 year old female
ASPS diagnosis in August 2015. 7x8 cm primary tumor in pelvis removed in October 2015 with no margins. Remaining tumors: unquantified lungs mets (largest 4x3 cm) and 6 small (1-5mm) brain mets as of 03mar2016.
Trial start date, 04mar2016. As of day 8 - only a couple mild headaches (2) went away with Tylenol. She is and has been on a daily multi vitamin, probiotic, and 10mg of lexipro.
Hoping things continue with little side effects. Doing weekly labs and office visits, next trip to NIH is end of this month. Next scans likely end of April.

[Bonni Hess]

Dear MJ, Thank you for your thoughtful update on dear Prairie's Cediranib Clinical Trial experience thus far. I am so grateful that she seems to be tolerating the Cediranib well with minimal side effects after her first week of taking the drug and am very Hopeful that will continue and that the Cediranib will begin to shrink and destroy her lung and brain mets, stabilize progression of her disease, and prevent the development of any new mets. I am perplexed about the discrepancy between the number and size of her reported brain mets which you said in your February 28th post "now numbered up to 8 mets- largest is 6x7 mm.", and which your today's update describes as "6 small (1-5mm.) brain mets as of 03mar2016". I know and understand that there can be small differences between measurements recorded by different MRI machines, but the difference between the recorded number of mets which was previously reported as up to 8 and then on March 3rd as 6 mets, and the difference between the previously reported largest 6 x7mm. met size and the March 3rd report of 1-5mm.size is concerning to me in terms of the accuracy of the reports which are very important for accurately determining the amount of met shrinkage or increased growth and the actual number of brain mets. Did the NIH doctors provide any explanation regarding the relatively significant discrepancy between the reported number and sizes of Prairie's brain mets? If not, this is a question which you may want to address and have clarified so you definitively know the correct actual number and sizes of the brain mets. In the meantime, I Hope that Prairie has been able to return to school and enjoying her little girl activities. Take care dear MJ and know that precious Prairie, you, and your family continue to be held very close in my heart and my most caring thoughts. With special hugs, healing wishes, love, and continued Hope, Bonni

[D.ap]

Hi Mary Jo
Thank you for checking in as I'm sure you have your schedule full with all involved.

I'm truly glad to hear of Prairies weathering cediranib well and sure am holding tight to the belief it will continue with good results

Are brain scans being performed every 3
months ? At the very least they should be
No negotiating involved .
And if ever need be with headaches increasing or else wise, insist on MRI pronto


Our prayers and hugs coming your way, to all involved .

Love
Debbie

[Vega343]

Bonnie and All,
Regarding the brain mets, there is a difference in the reports. The omaha report from 12feb (my post was 28feb) reported 8 small mets with largest being 6x7mm. The NIH report from 02mar didn't quantify the size at all and reported only "5 small mets". I was summarizing somewhere in the middle - although the NIH is now the treating facility and we will use those scans and reports.
I am comfortable with this, as it is certainly part of the study to quantify the size and number of mets to determine effectiveness of the drug, and it makes sense we use scans from their MRI machine and doctors. I understand interpretation is somewhat subjective of these smaller mets, so glad we have an NIH baseline. I don't mean to unclear or confusing for readers, I guess

[size=150]the bottom line is there are 5 identified "small" brain mets at treating facility NIH.[/size]

Differences could be machine, radiologist, and slicing... All really not significant given the presence of mets in general and that they are all termed small. If I could revise my post accordingly I would.
Also, scans will be repeated every 2 months.
Thanks,
Mj

[Olga]

MJ, thank you for clarification. There is no need to revise the previous post as the very fact that the number of mets can be subjective when they are very small and the reading depends on numerous factors is important for the readers to know, you have explained it very well and it should stay.

[Bonni Hess]

Dear MJ, I am very appreciative of your taking the time to confirm and clarify the discrepancy between the MRI reports. I was concerned because of the experience of a former NIH Cediranib Trial ASPS patient who received a monitoring scan report at NIH which his regular oncologist later determined had erroneously showed increased tumor growth which unfortunately wrongly resulted in him being immediately removed from the Trial after which he developed rebound and rapid disease progression according to his understandably very angry and distraught grieving mother. However, as you have said, now that NIH is the treating facility there should be a consistency in the reports, and their reported baseline can be used for an accurate comparison of future scans. It is just important to know and understand that scans are not always completely accurate for all of the reasons which you mentioned and as Olga has reiterated. I Hope that dear Prairie is continuing to tolerate the Cediranib well and that her scans in two months will show reduction in both the size and number of her brain mets and her lung mets, and stabilization of her disease with no new mets anywhere else in her body. With special hugs, ongoing deepest caring, healing wishes, love, and continued Hope, Bonni

[Vega343]

Hi all,
Reporting on 8 week scan results from cediranib clinical trial out of NIH.
Started treatment with 15mg per day beginning in early March, and has 8 week scans late April. Results were stability all around, our first scans that didn't show growth since she was diagnosed in August 2015!
Brian mets (MRI): stable, lung mets (ct with contrast): stable, possible pelvic regrowth tumor or scar tissue (MRI): stable.
She has been tolerating the treatment well, some fatigue and bouts of diarrhea, but usually makes it to school, plays with friends, has sleepovers, and is playing softball.
Labs and blood pressure have been fine. We are so grateful.
Will continue treatment per the NIH protocol and have scans again the week of 20 jun.
Please take care,
Mj