Prairie from Nebraska - Dx 2015

[Vega343]

My dear friends, that keep up with our personal story I so thank u!
We are meeting w onc dr. Chao at Sloan Kettering tomorrow morning for An opinion. I was able to touch base w another asps patient that lives in our same city, Lincoln, ne! Karen was great to speak with, and we plan to connect personally with coffee soon! I found her story on this site: http://www.cureasps.org/forum/viewtopic ... 6018#p6018
In any case, what a strong women. We were able to consult w dr. Rolle and he determined prairies lung mets to be unresectable. Disappointing as the news is, it's good to have all the information and know what options are and are not available. Results from recent scans show prairies Braun lesions are stable for the last 30 days, and although left to be determined by the doc, the lung mets have shown gradual growth over the last 90 days. The onc. We currently have in Omaha doesn't appear to be keeping up w me, so I am looking for a new doc. Karen ( the Lincoln asps patient) sees a doc at Dana farber that administers her treatment through a Lincoln onc. So I feel like that may be best for us too! So timely our meeting was. I will post again with the advice of the msk doctors. Thanks for your support and influence, it is more than doctors can give,

[MartinBube]

Dear Mary Jo,

I'm so sorry for the new that Dr. Rolle gave you that the mets are unresectable, however I hope that the visit today at Sloan Kettering will bring some news and additional advises how to proceed.

Very good that you have contacted Karen and yes I would say only from what I have read in her story, What a woman! she is great fighter and should be an example like many other here for us that fight this disease

My prayers are with you and you and Prairie , and STAY STRONG

[D.ap]

Mj and Prairie and. Family

Prayers with you today
Martin said a lot of my thoughts

Make sure good scan schedules are discussed and agreed upon to communicate back to your local oncologist from whomever you choose to administrate Prairies care
Love
Debbie

[Bonni Hess]

Dear Mary Jo, Thank you for your very thoughtful update. I am so sorry and share your great disappointment that Dr. Rolle feels that dear Prairie is not a candidate for his laser lung met resection. Did he provide any explanation for his opinion, such as he did with Jen who was told by him that her lung mets are unfortunately located too deep in her lungs for laser resection. I am grateful that last week's scans very thankfully and encouragingly showed no increased growth in Prairie's suspected brain mets/ undiagnosed lesions, but am sorry that her lung mets appear to have grown. My very best wishes are with you for a safe and successful trip to MSK, and I will be anxiously awaiting your next update regarding Dr. Chau's recommendations. I am personally not familiar with Dr. Chau. Who recommended him to you, and is he a sarcoma specialist? I am so sorry that your Omaha oncologist is not providing the care, support, and help that you need and deserve, but since that is the case, you definitely need to find a different doctor for precious Prairie. Have you considered/explored treatment for Prairie at St.Judes? Mario, one of the patients on this Forum, was treated at St.Judes I believe until he turned 21 and was then no longer eligible for pediatric care. I am SO happy that you have been in contact with Karen Imm, especially since Karen has been out of contact with this Forum for a couple of years and given the unpredictable nature of this insidious disease and the concerning status of Karen's heart mets when she last posted, many of us feared that she may have devastatingly lost her courageous inspirational battle. Please give her a hug from me when you meet with her. In the meantime, take care, travel safe and with ongoing Hope in your heart, and know that my most caring thoughts, healing wishes for dear Prairie, love, and continued Hope travel with you. Bonni

[Vega343]

Hello dear friends,
Meeting at Sloan Kettering was great, these guys have and are currently treating asps. We sat with oncologist dr. Chou and surgeon dr. laquaglia until all questions were answered and it was quiet. (At the same time)
Ultimately, they recommend going to the cediranib clinic trial prairie is eligible for at NIH. This is due primarily to her currently unresectable lung mets... They think there is more data to support this treatment as being effective in kids than sunitinib as of today.
They supported no radiation or further surgery at this point, and explained further treatment options as other systemic drugs and/or surgicsl removal of lung mets if needed. But the trial will clearly identify how the treatment is working and we will go from there.
In the meantime, I plan to see a recommended nutritionalist and just be sure we are getting all the best foods going, without disrupting the weight gain we hope to see now that the huge primary tumor is removed.
P is doing great, even as she is starting to understand this is a life long issue we need to address. I don't see anything wrong with allowing us all to be hopeful this first treatment regime will be completely successful and only scans will make up her life treatment plan, attitude is so big for recovery. The nurse at msk was so kind to be optimistic that although her lung tumors are unresectable today, that doesn't mean in years to come we won't take the remaining ones out.
Thanks for support, appreciate direct feedback as I depend on you guys to validate the doctors. They were also complementary that we did the brain MRI, and I told them only because of this forum did we push for that.
Thank u, mj

[D.ap]

Hi Mj

I'm so happy to hear of the great experience at MSK
The staff has always been very informative and supportive to Josh and his wife
So when will Prairies follow up brain scan be performed ?
Will dr Chou be able to administrate to a sarcoma doctor in Nebraska ?
Which cedirinib trial will you be applying for ?
Thanks so much for keeping us in the loop

Love
Debbie

[Bonni Hess]

Dear MJ,
I am so happy and grateful that you had such a positive meeting with the doctors at MSK and that they have helped to provide a treatment plan for you to pursue. My only question/concern about Prairie's participation in the Cediranib Trial is that according to the Trial protocol it is my understanding that untreated brain mets prevent enrollment in the Trial, so it seems that Prairie's four brain lesions may need to be definitively diagnosed and treated (if it is determined that they are ASPS mets) prior to Prairie beginning the Trial. The reason for this is the high risk of cerebral hemorrhage with Cediranib. My heart breaks for precious Prairie having to recognize at such a young age the prospect of this being a Life long battle for her, but I am very grateful for her and your positive attitudes, which as you so wisely say, is so extremely important in fighting this challenging disease. As the nurse told you, there is always Hope for a new effective treatment and cure, and it is that Hope which truly leads us through each day. Stay strong, hold very tight to Hope, take care, and keep in touch as you are able.
With special hugs, deepest caring, healing wishes for dear Prairie, much love, and continued Hope,
Bonni

[Bonni Hess]

Hello again Mary Jo, One additional comment/question regarding Dr. Chou's recommendation that Prairie begin Cediranib treatment through participation in the NIH Clinical Trial. Was there any discussion about pursuing Cryoablation of some of Prairie's largest or most dangerously located kung mets prior to beginning Cediranib treatment in order to reduce tumor burden as much as possible? If not, this may be something that you may want to consider, especially since some recent research posted on this Forum indicates that Cryoablation prior to systemic treatment may result in a more successful outcome with the systemic treatment. With more special caring thoughts, healing wishes for dear Prairie, love, and continued Hope, Bonni

[Vega343]

Thanks all,
Deb,
So when will Prairies follow up brain scan be performed ?
Since she showed stable after 1 month, they are moving to 3 months.
Will dr Chou be able to administrate to a sarcoma doctor in Nebraska ?
We are planning to get I to the same clinic Karen (other lincoln asps patient) goes to locally. Her treatment plan is administered through dans farber.
Which cedirinib trial will you be applying for ?
The NIH clinical trial

The NIH know about the suspected brain mets and didn't think it was an issue, I will ask. It turns out P isn't quite big enough yet for the trial and needs to gain some weight and/or height. She may be there in a year or so.
Next best option us to start the sunitinib, and both NIH doctor And MSK oncologist dr. Chou recommend beginning that. We did ask the surgeon at MSK (dr. laQuaglia) about removing some or even one of her lung mets before treatment and he said no. He didn't want to operate on a growing tumor, he will wait until treatment is going and take it from there. I do know we need to stop the therapy for surgeries, and I'm not looking forwArd to starting, but they really think we need to begin as the lung mets are growing slowly and are significant.

[Olga]

Cryoablation is not an open surgery, it is done inserting the probe trough the skin. Easy for the patient.
Also look at the new trial for MEDI4736 and combinations - it is promising, although its long term efficacy is unknown.
http://www.cureasps.org/forum/viewtopic.php?f=73&t=1130

[Bonni Hess]

Dear MJ, Thank you for your thoughtful responses to our questions and the helpful updated information. I understand that surgical removal of some of Prairie's lung mets may not be an appropriate treatment option at this time (although I am perplexed about the surgeon saying that "he didn't want to operate on a growing tumor"), but I personally think that Cryoablation should be explored and pursued prior to Prairie beginning a systemic treatment for the reasons that I explained in my previous post. As Olga has clarified, Cryoablation is not an open surgery. It is usually done as an outpatient procedure and it is a relatively easy and quick recovery that would not delay Prairie beginning a systemic treatment very long while still helping to reduce her tumor burden. I agree with Olga that MED14736 systemic treatment would be good to explore and discuss with the doctors as a possible better alternative to Sunitinib. Unfortunately, I am not personally aware of any ASPS patients who have had a very significant or sustained long term response to Sunitinib. Have the doctors provided you with documented data regarding Sunitinib treatment success for ASPS patients to support their recommendation? During our 14+ years of ASPS experience we have learned that it is very important and essential to make treatment decisions based on your own personal research and the best available documented information and not just the doctors' recommendations. Take care dear MJ and know how deeply I care. With special caring thoughts, healing wishes for precious Prairie, much love, and continued Hope, Bonni

[Vega343]

Hi all,
We have met with a new local oncologist that will administer the MSK treatment plan in Omaha. I had the requirement for the NIH study wrong, it is actually much more achievable for Prairie to meet the height / weight than I thought. She has gained 5lbs in the last month (from 50 to 55 lbs) - and only needs 8 more pounds to be eligible. The weight gain can only be explained by her primary tumor being removed, it was the size of a softball plus some. Her normal average weight for her height is 70lbs.
Given this, the docs are planning to rescan her pelvis (primary tumor site), lungs, and brain in the next few weeks to determine rate of growth and see if we have time to wait for her to gain enough to be on the ceridnib study or if we need to start sunitinib now instead. Pelvis and lungs will be with contrast CT, brain will be an MRI. This will allow us 4 months to compare lungs, and 2 months to compare brain going back to our initial scans done in August and September. I will be sure the comparison isn't just to the last scan 30 days ago.
If we start the sunitinib, it isn't our final treatment. We would be hoping to stop growth (or decrease) long enough for her to join the trial. Given the likely GI side effects with the drug, we know it might take longer, but may not be able to afford things growing long enough to simply wait. We will see with the scan results. I did research sunitinib drug usage both on this site and generally online, it seems about 90% of people have a positive response initially. Then results are mixed with a plateau happening and possible resistance and regrowth beginning again after about 6 to 18 months. Some patients reported to have had full regression after the treatment - some died (low %) due to hemroging in the brain. I have comfort we will confirm her brain mets are small directly before we start, and doctors aren't concerned about brain bleeds due to the 4 mets being 3mm or smaller at last scan.
The docs would rather remove her larger lung mets when they are in the regression phase than actively growing, of course if she doesn't respond to treatment we will need to reevaluate.
Thanks for all your thoughtful advice and comments. Did I mention she has to be off any treatment for 4 weeks in order to start cednirinib NIH trial? That factors into the decision too.
Thanks again for following and your comments, always appreciated.
Mj

[Olga]

Hi Mj,
thanks for an update. You should check with the cediranib trial folks if previous sunitinib won't disqualify her for enrolling - these are the drugs of the same type. Sometimes it is not only 4 weeks with no treatment (which is not necessarily a bad thing IMHO) but also no previous TKI at all.

[Bonni Hess]

Dear Mary Jo,
I Hope that dear Prairie is continuing to gain needed weight. Weight loss is definitely a concern and potentially dangerous issue with TKI treatments such as Sunitinib and Cediranib due to the nausea, loss of appetite, vomiting, and severe diarrhea that can be caused by the drugs. Brittany has had success in helping to stimulate her appetite, reduce nausea, and alleviate weight loss with the use of marijuana which is thankfully legal in the state of Washington. I know and understand that this might be an issue for dear Prairie because of her young age, but perhaps there is a medical marijuana option that could be discussed with the doctors and pursued if you are interested. I know that some people are morally opposed to the use of marijuana, but it is certainly less toxic and addictive than the opiate pain meds which are often prescribed and readily used by many cancer patients, it DOES help with relaxation, nausea, and stimulating appetite, and there is some documented data that indicates that it my actually be a cancer fighting drug also. Severe weight loss is a disqualifying factor for continued participation in TKI Clinical Trials so it is an issue which needs to be addressed and resolved. The chronic severe diarrhea that is a common side effect of TKI drugs can cause severe dehydration which results in severe headaches, nausea, and vomiting. In order to try to prevent the frequent emergency hospitalizations that were required to resolve Brittany's dehydration related sudden onset of severe uncontrollable headaches, nausea, and vomiting, we scheduled her for bi-monthly outpatient re-hydration with intravenous saline and anti nausea Zofran which has thankfully been very successful for the past couple of years, and is something which I encourage you to discuss with the doctors and have in place prior to dear Prairie beginning her Sunitinib treatment to prevent her from going through all of the immense suffering that Brittany did prior to beginning her re-hydration regimen.
My very best wishes are with dear Prairie for very good and encouraging results from her upcoming scans, and Hopefully a definitive determination that the concerning small brain lesions are NOT ASPS mets.
With special hugs, deepest caring, healing wishes for precious Prairie, love, and continued Hope,
Bonni

[Vega343]

Our scans last week showed:
Stable lung mets as compared with previous scan 5 weeks prior. No doubt mild growth since that done 2 months prior when I personally compared.
No pelvic tumors or other noted
Brain mets slight progression since first scan 2 months prior. Went from 4 mets <3mm to 5 mets <3mm (new one is 1mm). There is uncertainty for me, as these are the size of known lesions with much larger surrounding 'flares'.

I am having a second opinion of interpretation from MSK soon, the reports I got from omaha hospital weren't well written and it's so important to be sure.

Radiologist tells us gamma knife cannot be successfully targeted at mets under 5mm.
The plan is to continue the watch and wait approach at this time. Seeing how her cancer grows with repeat scans in a month.

The good news is she is living it up, no pain, normal energy and gaining weight. She needs to be 62 lbs for the trial, she was 55lbs last week. She did wiegh 62 lbs when she was 8, so we are hoping for significant gain quick.
I have asked the MSK doctors to reconsider cryoablation for her biggest lung mets (biggest are 4.2cm and then 2.9cm). Also expressed concern about brain when starting the cediranib trial or sunitinib - they assured me it is being considered. This may mean the risk is less than doing no treatment? But I'm waiting for the phone call to discuss when he talks with the surgeon.

Thank you, mj