Ellie from England - Dx Sep 2016 at 12 yrs old

[arojussi]

Thanks for update. It is best to wait with thoracotomy until as many tumors as possible are big enough, that they can be found during surgery, so keep sending scans to Germany and wait until they feel it is time for surgery. Possible rebound effect after tumors became resistant to cediranib would be my biggest fear. If only one or two tumors cause problems treating them with cryoablation would also be good option.

[Disco76lover]

Thank you Jussi. Xx

[D.ap]

Hello Melanie,

So to recreate your time line

September 2016 Dx'd --3cm primary

September 2016 had base scans brain , lungs and bone

January 2017 Next set of lung 7 mets 1mmish

March 2017 3rd set of lung
scans ?CT scans showed 1-3mm probably reported "multiple mets"

May 2017 -started cedirinab 20mg

June 2017 showed mets 3mm size..

Aug 2017 scan showed multiple tumors one as 10mm. This was first 3 month scan since beginning cediranib ?
Also reports of 25 and 35 respectively

Will the doctor be doing a year comparison with the next scan ?
As ASPS is so slow to grow , indolent ,doctors need to compare scans up to 12 months prior to see actual
growth .

What's really great is if you all need the services of
Dr Drewes ,the mets can be analyzed for actual effects from cediranib upon removal .

[D.ap]

Melanie
Another question .
At what percentage does your oncologist determine that the cediranib is not working ?

Clinical trials I believe use a target tumor and look for a 20% increase as a reason to discontinue . To determine its
"Not working "
Jussi has a thought with the cryobaltion ?
The 10mm/ 1cm tumor is where?

My love and prayers for success.
Love
Debbie

[Olga]

Melanie, although it may be sounds scary, Deb is asking the right question. We had this situation so many times here - ASPS is a slow growing tumor, so when the clinical trials or treatment regimens use Response Evaluation Criteria In Solid Tumors (RECIST). They consider it a Progressive Disease (PD): At least a 20% increase in the sum of the LD of target lesions, taking as reference the smallest sum LD recorded since the treatment started or the appearance of one or more new lesions. Untreated ASPS can grow slower than that very often, so these criteria do not work for the ASPS. For ASPS we always recommend to our patients to ask (politely request but insist) that the scans are compared not the last to the previous one, but to the one at the start of the trial, or at least few scans before, to detect if the speed of growth at least slowed down.
It is really feels good to hear that there is no growth or there is stability - we feel hope and rely on the doctors to know better, I made this mistake to at some point. The radiologist was reporting "stable lung mets" for almost a year comparing scan to scan until we finally realized some met grew all this time, but very slowly. Had to run for the surgery, still feel guilty. Ivan learned how and started to read his own CT scans since then.

[Disco76lover]

Hi just to recap Ellie's op was in September to remove 3cm primary tumour in calf muscle. All scans at that point were clear except for a dot on her lung. December ct scan showed mets, March ct scan showed more mets on lungs and growth, May ct scan which was done the day before cediranib was started showed more growth in lungs again. This time the largest being 9mm at the bottom of her lung. All scans were sent to Dr Drewes and he confirmed he could operate to remove lung mets. Cediranib is given on compassionate grounds, not clinical trial and our oncologist has advised if there is growth (20%) then they will stop it as it shows it's not working. The latest scan in august which is the first since the treatment started in May has been analysed by the oncologist, her team and crucially the radiologist and compared to the one in May which was took the day before treatment started. All have said there is absolutely no growth and no more mets since the last scan. She said on each scan up to that point there has been growth and she's been very thorough and very honest. I hope this answers all questions. Please advise if it doesn't as I don't fully understand everything and am learning all the time with this awful sarcoma. I should quickly add that Ellie had a brain scan again in May, before treatment which showed no mets. I really appreciate all advice as it is priceless. Thank you so much xx

[Olga]

Melanie, thank you for summarizing the treatment history so far. The treatment plan sounds reasonable so far, except 20% growth as a cut off. ASPS has a slow growth rate as it is, without any treatment, although it might not look like it was slow in the beginning. After the initial surgery to remove primary was done, there was a temporary spike in the growth factors that the body releases in order to heal, and sometimes the tumors/mets react to these growth factors and grow faster for awhile. The speed of growth could have slowed by itself and remained steadily slow for awhile. It looks like cediranib managed to stop the growth - if I understood you correctly there absolutely no growth on the cediranib as of now (the absolute stability versus RECIST stability). Verify that and if this is true, ask them to compare the next scan not to the previous only, but also to the first stable on cediranib scan.
Brain and other metastases usually appear way later than the lung mets, so the repeated scans (brain MRI, bone scan) are still needed at least once a year. for the rest f her life.

[Disco76lover]

Hi the recent scans are compared to all previous scans for growth. I asked about RECIST but they advised they only use this when on clinical trials. As Ellie isn’t on a trial when they said her mets were stable, they confirmed no growth at all since the last scan. We are taking Ellie for her next lung ct scan on Tuesday so as you all know too well, scanxiety is here!

I will update once the results are given but in the meantime I can advise that Ellie is having no major side effects at all and she has been on cediranib since May. This will be the second scan since starting treatment in May.

I am going to ask for a full bone scan and abdominal
Scan. Her last bone scan was in Sep 2016.

Thank you all again for your priceless advice and recommendations.

[Olga]

To make the scanning situation clear - with ASPS the scans should not be compared re. growth since the last scan but since the baseline scan - when the cediranib first started for example, as the natural growth of the ASPS sometimes is so slow that it can appear stable (very little undetectable changes between two consecutive scans) when in fact it is slowly growing - can be seen when 6 months or a year interval is used. I am not saying it is a case here as it is very much possible there is a good response to cediranib, just make sure the longer intervals are used sometimes.

[Disco76lover]

Thanks Olga. I will double check again with the Oncologist on Tuesday re scans.

[Disco76lover]

Ellie had her ct lung scan on Tuesday and it showed stable disease. Two of her lung mets showed a tiny increase of 1mm but that could be the machine and not necessarily growth. We are pleased with this result and just to recap, Ellie is on 20mg of cediranib daily with no side effects except loose bowels now and then. The latest scan was compared to the scan Ellie had before treatment started.

[Olga]

It is a good result considering that the baseline scan was used to compare. And yes, 1 mm is in the margins deviation values - if the resolution step was 2 mm. How often is she scanned?

[D.ap]

Melanie
Great news!
Thanks for including us. Sharing with you in your joyious news today and
always !

[arojussi]

Thanks for sharing scan results with us. Happy to hear that at least there is no new mets. As asps is naturally slowly growing unfortunately it is very hard to say what possible 1mm increase in size means, but looks like at the moment you have no hurry with laser surgery or other local treatments for lung mets.

[Bonni Hess]

Dear Melanie, I am sharing your great joy and relief from your precious Ellie's very good and encouraging chest CT with much happiness I am so grateful that she is tolerating the Cediranib well with minimal negative side effects which is really amazing given the very severe and debilitating side effects that our dear Brittany has experienced and courageously suffered from her 30 mg. Cediranib dosage during the past 8 and a half years of her Cediranib Clinical Trial treatment. It will be very interesting to learn if a smaller dosage can still provide disease stability and dramatic met shrinkage/disappearance as Brittany has VERY thankfully had thus far, or if the higher 30 mg. dose is still necessary for adults to have a successful response to the Cediranib. In addition to the recent chest CT I Hope that you have also been able to schedule abdominal/pelvic scans as well as a full body bone scan for dear Ellie to ensure that all areas of her body are being adequately monitored since, as we learned many years ago with this unpredictable disease, even though a chest CT may appear stable, umfortunately mets may develop in other areas. Pro-active, adequate, and regular scans are critically important in managing ASPS. In the meantime, take joy in and celebrate dear Ellie's very good chest CT scan results, take care, and keep in touch as you are able. With happy hugs, special caring thoughts, healing wishes, warm friendship, and continued Hope, Bonni