Ellie from England - Dx Sep 2016 at 12 yrs old

[mikko]

Fachkrankenhaus Coswig. Dr. Rolle is retired and Dr.Drewes is now doing laser surgeries, his email address is: drewes@fachkrankenhaus-coswig.de

[Disco76lover]

Thank you

[Olga]

You probably missed the info in one of my previous posts that in UK the laser assisted surgery is also available so when the mets are few mm they are the good size for it (Mr George Ladas, senior consultant thoracic surgeon at the Royal Brompton Hospital has stared it in 2010 so he should be pretty experienced by now). Although in Coswig, Germany they are specializing in this type of surgery but I am pretty sure the health system would like you to stay local. We always paid out of pocket there coming from Canada.

[Disco76lover]

Thank you olga. We will discuss this with the oncologist as I know it is also performed at the hospital we attend. My concern is they don't agree to do it on Ellie either now or in the future.

[Olga]

Laser assisted surgery is a very technically demanding type of surgery, they use the laser in order to preserve the lung tissue, otherwise the surgery for the multiple lung mets is devastating as they cut a pie shaped pieces with the mets, using conventional tools. The key is the qualification of the surgeon and the number of the surgeries he has done using laser - with the experience their confidence grows and they take on more multiple mets cases. When Ivan's lung mets were first diagnosed, the local surgeons said no to surgery - tiny mets in many lung segments would require to resect to many segments. We found Dr.Rolle - he was in his prime ability to use this tool and was very confident, told us to wait till the next scan, then the next scan etc. The new mets were surfacing but then the number stabilized and they continued to slowly grow. He re-evaluated the situation and invited Ivan for the surgery a year and few months after the first lung mets were found. He wanted to remove as many as possible during the surgery. You do not need to rush to any - systemic treatment or surgery now, as the growth can slow/stabilize on its own as the growth factors go to norm after the healing after the primary surgery is completely over. In any event you need to know the real typical rate of growth for Ellie lung mets so you need to have at least one more 3 months interval scan to be able to calculate her normal (outside of any major surgeries etc) rate of lung mets growth (increase divided by the number of months). It is needed to be able to evaluate the efficacy of the systemic treatment if it is done. They often use the standard criteria called RECIST (you can read on it on the internet) and report all growths less than 20 or 25 % as a stable disease - which for ASPS is unacceptable as its own untreated speed of growth can be slower than that so ineffective treatments could be reported as a success by mistake.
Ask the oncologist to provide you any supportive articles or studies for any treatments that are proposed. Tell her you need to read them and to digest before of agreeing on anything. Many of them use a PFS (progression free survival) as a target goal but it is already known that it could not lead to an increase in the OS (overall survival) so ask for that instead.

[Disco76lover]

Thank you again x

[Bonni Hess]

Dear Melanie,
Olga has offered you some excellent information, insights, and advice regarding your doctor's recommendation for systemic treatment for dear Ellie, all of which I agree with. I know FAR too well the desperate feeling to want to do something/anything immediately to totally rid your precious child's body of this insidious disease, but unfortunately by jumping into an unproven treatment it can create more problems than it helps. As Olga has indicated, at this point in Ellie's disease, the best approach may be to postpone any surgical or systemic treatment until you are able to determine the rate of growth of the mets through monitoring scans in another three months, and then eventually remove as many of her lung mets as possible with laser resection. It is critically important to continue to monitor her disease with vigilant regular scans including chest/abdominal/pelvic scans every three to six months, and a once a year brain MRI and full body bone scan, and to manage the disease with resection, ablation, radiosurgery of any new mets anywhere in the body at their smallest most treatable size. Systemic treatment can then be postponed until no other treatment options are available for unresectable or untreatable mets. Since this is a metastatic disease, as Ellie's doctor has told you, more mets will unfortunately almost certainly continue to appear post removal of the currently visible ones. However, until an effective and permanent systemic treatment and cure is found, managing the disease by removing/destroying as many mets as possible seems to be the best treatment approach. Unfortunately, and inexplicably, many oncologists take a palliative instead of a curative approach with ASPS patients because it is a metastatic disease, and they refuse to resect/ablate/treat existing mets waiting instead until the mets become symptomatic, which then may be too late to successfully resect/ablate/or treat them. At this time, there is no guarantee that any of the currently available systemic treatments will prevent the appearance of more mets/increased growth of existing ones and provide sustained disease stability so monitoring the disease and treating with local interventions may be the best treatment approach. The Cediranib which Ellie's oncologist is recommending, has some very harsh and debilitating side effects, and although our daughter Brittany has VERY thankfully thus far had a very successful and sustained 8 year response to her Cediranib treatment, she is, to our knowledge, the only ASPS patient who has thus far experienced that type of a successful and sustained long term response to the drug. Additionally, once Cediranib treatment is started, it must be continued as long as it is showing success because discontinuing the drug can result in rebound and aggressive disease progression. These are all very important factors for you to discuss with Ellie's oncologist and to consider before making the decision to proceed with Cediranib or any other type of systemic treatment. I am Hopeful that you will be able to communicate with MJ regarding her dear 10 year old daughter Prairie's Cediranib Clinical Trial experience and results thus far, although I am increasingly concerned since MJ has not yet posted an update about the results of Prairie's February scans, and she has not responded to my private message regarding the February scan results and dear Prairie's current situation. Hopefully no news is good news and Prairie is having a successful response to her Cediranib treatment with stabilization of her disease and shrinkage of her multiple mets. I know that you must be totally overwhelmed with precious Ellie's diagnosis and all of the information which you are receiving, but I Hope that you will continue to reach out to our ASPS Community for information, input, and strengthening support and encouragement. I acknowledge that the majority of us on this Board are not medical doctors, but we have invaluable personal anecdotal treatment experience to share, which the doctors are not able to provide. Take care dear Melanie, keep in touch as you are able, stay strong, and let the bright light of Hope lead you through each day on this difficult ASPS journey which we all share.
Reaching out to share special hugs, caring thoughts, healing wishes, warm friendship, and continued Hope,
Bonni

[Olga]

After Bonni posted re. Cediranib - is it aval. outside of the clinical trials in UK? Here is is only avail. for ASPS in a clinical trial setting.

[Disco76lover]

I thought I should update you regarding Ellie's Treatment. She started on cedirinab 6 weeks ago (20mg) and so far so good. Ellie has had hardly any side effects except diorreah once or twice, a nosebleed and more recently the skin on her hands peeling. She is living life as a normal, healthy 12 year old. Her bloods and blood pressure are normal and Ellie is monitored on a fortnightly basis, soon to be three weekly. Ellie's next scan is in August. We met with a surgeon today who said he wouldn't recommend an operation due to there being 20ish lung mets. The largest met 0.3cm or 3mm. He is however going to discuss Ellie's case with another Thoracic Surgeon. He did say that due to Ellie's lung mets being there right after her primary was removed, it isn't a good prognosis which worries me greatly. However, after reading stories on here, such as Jussis, I know lung surgery / ablation has been performed and mets removed on a greater number so I will continue to pursue.

[jcs2007]

Dear Melanie, I just wanted to say that I totally understand the emotional roller coaster that you are on as you search for the best treatment for Ellie. My son was also diagnosed at 12 and has had some surgeries plus was on a clinical trial for 7 years. This board will provide great information and support. My best advice is to stay vigilant with scans as the others have recommended in the other posts and don't hesitate to ask questions. Take care, Cindy

[D.ap]

Hi Melanie
It's good to hear of Ellie's tolerance to ced

I concur with Cindys suggestion of staying vigalent with scans .
Brittany was 19 when dx'd and started on cedirinib , when surgery and ablation wasn't an option with a unresectable pancreatic tumor , I believe ,was endangering her life
I'm sure Bonni will respond when she gets a chance .

I am a mom as well but Josh was 32,when dx'd .
Different adulting and different position from yourself and Cindy .

However time line of treatment and protacal should of been sched similarity in spite of 12 years old verses 32, in my opinion .

Surgery then scans to eliminate life threatening tumors .
Asps is chemo and radiation resistant when used one without the other.
Is Ellie in a clinical trial ?

Write when you can
Love
Debbie

Ps Sams personnel, Cindys son
You may already have read
http://www.cureasps.org/forum/viewtopic.php?t=330

[Disco76lover]

Thank you Cindy and Debbie. Ellie's oncologist has obtained cedirinab on compassionate grounds. The clinical trial has ended here and the paper was published a week or two ago. I will try and get hold of it. Our oncologist has worked tirelessly to get Ellie the drug and we thank God for her. It's a waiting game now until the next scan.

[D.ap]

Melanie
Looking forward of the findings of the trial
It was a phase III Trial ?

Phases of Clinical Trials

http://www.cancer.net/navigating-cancer ... cal-trials

[Disco76lover]

Cindy I have just read your story regarding your son, Sam. Our stories are similar. I am pleased to hear your son is doing well (and hope this is still the case). It is a rollercoaster of emotions as you say and we try our hardest to be positive. At the moment Ellie is on cedirinab but I am looking at surgery for plan b. The thought of medication after medication worries me but will take it if it's the only option. I am so grateful for this site and the fact we can share our stories, learn from others and take comfort from the positivity. God bless your son and you on this difficult journey. X

Debbie - I am so pleased to hear Brittany has had success with cedirinab. I still hold out hope that one day Ellie will have NED and believe removing the lung mets is the only chance we have in obtaining this. I am sending Ellie's scans to Dr Drewes in Germany so he can look at her lung mets and advise re surgery / RFA. God bless you and your daughter

[D.ap]

Melanie
The plan you have of lung mets being addressed is a great plan .
Our plan was not to engage with chemo until we absolutely had to and I still feel it was the right move .
Dr Rolle , Dr Drewes mentour , encouraged us to try a TKI after our son Josh had both lungs lase treated, but it didn't happen as a result of circumstances ..
That was Bonni's and Brittanys plan years ago as well.

Please let us all know how Ellie is doing and scan results .
We are on compassionate use with Opdivo and thank our lucky stars every day for what it has given us with Joshua's health and well being .

http://www.cureasps.org/forum/viewtopic.php?f=82&t=1297
Night
Debbie