Ellie from England - Dx Sep 2016 at 12 yrs old

[Disco76lover]

Thank
You Olga and thank
You Bonni for your always caring and kind words. I must say our oncologist is an amazing lady and I wonder if she says that to not get our hopes up in case there is no shrinkage.

We Keep hoping for a reduction but I worry that the last scan showed 1mm increase in a couple of mets which is just a nightmare as I now keep thinking the next scan will show a bigger increase. I hope not.

[Bonni Hess]

Dear Melanie, Olga,has made a very good and valid point regarding the fact that not all mets may respond to a systemic treatment as was the case with Brittany"s small superficial abdominal met which her very astute Clinical Trial oncologist Dr. Sawyer called a "non responder" because it continued to grow while all of the other mets were stable or showing some small amount of shrinkage.Gratefully, instead of removing Briitany from the Trial due to growth of the abdominal met, Dr. Sawyer recommended and authorized it to be resected which we had done in an outpatient procedure. Following resection of the met, Brittany VERY thankfully experienced significant shrinkage and disappearance of her innumerous widely disseminated mets which continued until none of them are any longer scan visible. Also, the very small one mm of growth in a couple of Ellie's lung mets could be attributable to the way that the CT sliced the tumor and may not be increased growth at all. For the first couple of months of Brittany's Cediranib treatment she had only stabilization of her disease with no new tumors or increased tumor growth, with the exception of the non tesponding abdominal met, so Hopefully dear Ellie, like Brittany did, will soon begin to have some tumor shrinkage and disappearance. In the meantime, take care, keep in touch as you are able, and let Hope continue to lead you through each day. With warm hugs, special caring, positive thoughts, healing wishes, and continued Hope, Bonni

[Bonni Hess]

Hello again dear Melanie, I am wondering if you were ever able to connect/communicate with MJ (Vega343) mother of now 11? years old Prairie who was diagnosed at age 9 in 2015 and was, as of MJ's last update April 20th, 2017, participating in the Cediranib Clinical Trial at NHI in Bethesda, Maryland. I have tried to contact MJ through a private message and a post on her Personal Updates topic, but unfortunately and concerningly she has not responded to either. Hopefully dear Prairie is having a very successful response to the Cediranib and is doing well, but it is always concerning when people lose touch for too long given the unpredictable nature of this insidious disease. It is so beneficial to everyone fighting this very challenging disease if/when people share their anecdotal treatment information so that we can all learn from each other and be as informed as possible. Thank you for your continued faithful and thoughtful sharing of dear Ellie's Cediranib treatment experience and results thus far. Heart to heart with special caring thoughts, healing wishes, warm friendship, and continued Hope, Bonni

[Disco76lover]

Thank you Bonni and I hope the slight increase is the machine like you mentioned. As for the question regarding Prairie, I haven’t had any personal contact but I have found the posts useful due to the similar ages of our children as well as the treatment. I hope all is well and an update is made soon as to Prairie’s progress as we all worry and wonder when no contact has been made for some time.

[Disco76lover]

I’ve been trying to get a scanning schedule agreed with our oncologist, based on all the evidence I’ve read on here about being proactive and not reactive. Our oncologist is concerned about exposing Ellie to too much radiation, which I can understand, as she has a lung ct every 3 months. The oncologist did agree to a yearly brain mri and she also agreed to 6 monthly pelvis and abdomen ultrasound scans. However, she’s liaised with Prof Judson who has advised not to scan unless she becomes symptomatic. I’m feeling pretty low about this now as I feel waiting for symptoms is not the way to go. We are at the hospital on Wednesday so I’ll try and discuss it more then. If there is any evidence to suggest a scanning schedule, I would be very grateful for the info.

[Bonni Hess]

Dear Melanie, I am so sorry and share your concern and frustration with the resistance that you are experiencing with trying to proactively schedule important scans for dear Ellie. I understand and appreciate the doctors' concerns about scan related radiation exposure, but we have always felt that the benefits of finding mets at the smallest most treatable size outweighs the risks. Based on our personal experience and 16+ years of extensive ASPS research and observations, we have found that you DO NOT want to wait until mets become symptomatic because they may then be too large to successfully resect or treat as happened with our dear Brittany's large very scan visible spinal met which was inexcusably missed/not reported by the radiologist in two different chest CT scans which had been done every three months during a six month time period. Ultrasound is not adequate to detect very small mets, and an abdominal/pelvic MRI can/should be done to prevent the high radiation exposure of CT scans. I have personally met Professor Judson at an ASPS conference/workshop in Miami in 2016, and have communicated with him and closely followed his work with Sarcoma patients for many years. I am deeply shocked that "he has advised not to scan unless she becomes symptomatic", and if that is true, I am extremely disappointed with, and respectfully strongly disagree with what I consider to be erroneous advice. Appropriate, adequate, vigilant scanning is one of the best weapons that we have to try to manage and fight this unpredictable disease. Prairie's mom MJ unfortunately/perplexingly/concerningly seems to have lost contact with the Board and hasn't responded to my couple of requests for a brief update, but when she was initially communicating on this Forum, and as per our advice, she requested a brain MRI for precious Prairie when she was first diagnosed with a primary ASPS tumor in her abdomen/pelvic area. Heartbreakingly the brain MRI revealed brain mets which VERY thankfully had not yet become symptomatic. As of MJ's last update, despite my expressed concern, dear Prairies brain mets had not been resected or treated with radiodurgery like Gamma Knife because her Cediranib Clinical Trial doctors at NHI didn't think it was necessary to address the brain mets until it was determined if the Cediranib would shrink/destroy them. Hopefully the Cediranib was successful in doing so, but having not heard from MY I am increasingly concerned. I Hope that you are able to stay strong and insistent that dear Ellie receive the appropriate and necessary scans. It should NOT be such a difficult battle to obtain the proper proactive monitoring and care, but unfortunately TOO many doctors take a TOO nonchalant and uninformed approach to managing ASPS, and TOO many patients/families are naiively willing to just accept the doctors' sometimes erroneous advice. I am so very grateful that you are not one of those people dear Melanie. Take care, stay firm in your requests/demands, and keep in touch as you are able. Heart to heart with deepest caring, shared concern and frustration, positive thoughts, healing wishes, and continued Hope, Bonni

[D.ap]

Hello Melanie

I so echo Bonni’s response
Never give into what you understand to be true . Get answers that resonate what your understanding to be of proper preventative care. PERIOD

Ellie is 13 correct ?
Mri’s can always be used in any need be scan as well.

https://www.google.com/amp/s/www.radiol ... c-mri.html

Exposure discussion

https://www.woosterhospital.org/article ... ct-and-mri


Much love
Debbie

[arojussi]

It is indeed very important to try minimise radiation exposure, because radiation effects are cumulative and Ellie will unfortunately have to be scanned for the rest of her life, because late metastases are typical for asps. If plan is to treat possible new mets with local treatments(surgery, ablation srs) then scans are last place to save money as it is cheaper to treat mets if they are found at the smallest possible size. This type of approach is effective only for asps and in other cancers investing much money for scanning wouldn't be as helpful.

[D.ap]

Jussi
You are correct
Might I add -

If need be , X-rays sonagrams and or ultrasounds
>3

[Disco76lover]

Thank you Bonni, Debbie and Jussi for your comments and advice. I just feel really helpless at the moment but will speak to the oncologist on Wednesday. The treatment and care ellie has received so far has been great from the team but I will try and discuss my concerns on Wednesday. Ellie is 13 Debbie you are quite right. The information from you all is very valuable and we really appreciate it.

[Olga]

There is a strategy to avoid an overexposure to radiation to alternate the CT scans with the X-rays. You can also safely increase the interval between the CT scans to 5 months. We already know that in UK metastatic sarcomas are supposed to be treated only when symptomatic, lost some patients when they brain mets were untreated (could be treated easy by the radiosurgery on a smaller size but they were denied). Try to keep the good relationship with the treating oncologist, they can arrange it differently if feel there is a way to deal with the mets when found early.

[Disco76lover]

Thank you Olga. That is my concern and I worry about what could happen by not scanning and keeping ahead of this indolent disease. The oncologist has mentioned extending the time between scans if stability continues so hopefully this is the way forward.

[Disco76lover]

Ellie had her 3 monthly lung scan on Tuesday and it showed a couple of the lung Mets have grown slightly by a mm. One has also shrunk by a few mm. The rest have stayed the same with no new ones. Our oncologist is happy with this and said cediranib is doing what it should be doing and classed it as disease stability which we are happy about. The next lung scan is in May along with a brain MRI. All Ellie’s bloods so far have been good and she is tolerating the drug extremely well. She is on the maximum dose of 20mg for a child. We just hope and pray this continues for a long time. X

[D.ap]

Melanie

All excellent news!:)
So Ellie’s scans are being compared to last years base scans?

[arojussi]

Happy to hear there is no new mets.