Auz from Toronto - Dx May 2015 at 19 yo

[Andrew Ward]

Hi, this is Auston's Father writing.

Auston's story:
Auz has a twin bro “Dill”, an older bro “Kat”, and a mom “Moe”. We live in rural Ontario just outside Toronto, aka GTA.
2013 Summer, Auz developed a back pain and numbness in his leg. Of which he went to a chiropractor for relief and it worked to some degree.
2015 Spring, With the pain and numbness worsening Auz went for an MRI to look for a burst disc. The MRI came back showing a tumor, then an MRI with contrast to confirm. We then rushed to St Mike’s emerg where the on call Oncologist determined that it was not in his spinal column and referred us to Mt Sinai (MSH) Sarcoma specialist. Appointment w/ that doctor had us believing that it was treatable and curable and the appropriate scans and biopsy where scheduled. Pathology of the biopsy confirmed ASPS and the Chest CT shows mets. At this time the Oncology team referred us to the Clinical Trial Oncologist at MSH.
May 1st 2015, we were told that ASPS is not curable nor is it effectively treatable with Chemo or Radiation. Pazopanib (Votrient) was discussed and presented as being very expensive and not very effective. We were then informed of NCT01391962 https://clinicaltrials.gov/ct2/show/NCT ... 962&rank=1, the Sunitinib or Cediranib Trail by NCI at Princess Margret (PMH), which we could participate and possibly benefit from. After a weekend of much research and soul searching we have decided to move forward with the trial. We have started the base line tests of which we had to really push for a brain MRI. They said that they don’t normally do a brain MRI unless they suspect mets, but we learned from iCureASPS that a complete scan is essential, (Thanks!) So far we have done Blood & urine, chest/pelvic/abdomen CT, ECG, MUGA, full body bone and brain MRI, and a physical exam. We get copies of every test for our records. We now await the trial application return and start either Sunitinib or Cediranib.

Auz is a very strong kid, the strongest I know! His attitude is “Damn the torpedoes, Full steam ahead“http://philosiblog.com/2012/07/05/damn- ... eed-ahead/, We truly believe that we will win this. He has developed anxiety to change, he will be reading this, so I ask that peeps be nonchalant.

Treatments being researched by us:
Radio Frequency Ablation (RFA)http://www.interventionaloncology360.co ... r-ablation was not presented to us and we are pursuing an answer as to why. I think I read about someone here who has done this. Would love to hear anyone’s personal experience with this.

Cryoablation for the lungs was not presented to us either. Have not done alot of research on this but it’s on the radar. I’m aware of this topic Amanda from New Zealand - Dx 2014 @ 46 yrs of age

Then there is Proton Therapyhttp://www.cancer.net/navigating-cancer ... on-therapy, also not presented to us. However, it sounds good (better than radiation) and we’ll be researching accordingly. Would love to hear anyone’s personal experience with this. I should say that I work at a Nuclear Power plant and feel that I have relatively good understanding of the different radiators and their effects.

Non-Medical treatments being researched by us:
It’s important to note that we were given a Prohibited Medications list (PML) for the trial.

Apricot seeds http://www.naturalnews.com/035554_laetr ... anide.html, does not seem to be on the PML. Anyone have a personal experience?

Hemp Oilhttp://wakeup-world.com/2014/09/08/the- ... es-cancer/, does not seem to be on the PML but we were told that this was not allowed, which is odd given NCI’s report http://www.cancer.gov/cancertopics/pdq/ ... onal/page4. We are not considering this as it might jeopardize our ability to participate in the trail and it’s kinda illegal here. It’s a very sticky topic (Pardon the pun). Tonnes about this on the W3 (World Wide Web), anyone have a personal experience with Rick’s Oil? I saw Britanie’s. We may consider this if the trial is not successful. We understand that may use this for pain but is anyone using it for the CBDs?

Natural Cancer Cures! Once again tonnes on the W3, Gerson, Breuss, The Alkaline body ,The Truth About Cancer. But what to believe? If there is a silver lining to ASPS, it seems to be that it’s slow growing. Which means we have some time to research all of this, a monumental task! We would love to hear anyone’s personal experience with these. At the moment, we are moving towards The Truth About Cancer. If I can grow it or catch it, I’ll eat it.

Acupuncture http://thetruthaboutcancer.com/cancer-s ... upuncture/ for ASPS pain. Is anyone using Acupuncture?

I’m not sure what topics to put all of this in; I’ll probably break it up into the appropriate forum topics.

Oh one other question. A trial cycle is 28 days long. They are talking about doing scans again after two cycles. Should I ask that scans be done after each cycle?

[Olga]

Hi Andrew,
welcome to the board no one is happy to be a member of (and all other lurkers from your family too).
Thank you for the detailed report.
Can you be more specific re. current status - primary location/size/resectability and lung mets quantity/size? I personally do not like idea of going into the trial with unresected primary and there is has to be a very good reason for that.
Re. other questions - they are largely irrelevant at the moment as Auz is going to start a trial soon. Every modality you mentioned has its place in ASPS treatment and many of our patients underwent few types - different tool for different task. AS for Natural Cancer Cures - we have not found any evidence it works, tried many.
Thanks,
Olga.

[Bonni Hess]

Dear Andrew,
As I told you in response to your initial Guest Book entry, I am so sorry for your son Auston's very recent ASPS diagnosis, but applaud your very pro-active approach to fighting his disease, and am grateful that you have reached out to and joined our Discussion Forum which is an invaluable source of shared ASPS research, anecdotal treatment infomation, and strengthening support and encouragement for everyone in our ASPS Community who is fighting this extremely rare disease.
Thank you for sharing the detailed information about Auston's recent ASPS diagnosis, his current treatment plans, and the various treatment options which you have explored and considered.
I am glad that you followed the advice from this Forum and persevered to insist on complete scans including a brain MRI for Auston because it makes no sense to wait for tumors to become symptomatic since they need to be found and diagnosed at the smallest possible size for the best chance of treatment success.
I share Olga's concern about the primary tumor having not yet been removed and strongly encourage you to discuss resection of the primary before Auston begins the Cediranib/Sunitinib Trial in order to prevent the primary from continuing to release tumor cells into the blood stream, and also to reduce the tumor burden in Auston's body which will Hopefully allow the systemic treatment to be more effective. Depending on the size and number of mets in Auston's lungs, I also encourage you to explore Cryoablation as a possible treatment option to shrink/destroy large or concerningly located lung mets.
Based on my almost 14 years of ASPS experience/research/observations/networking since our daughter Brittany's ASPS diagnosis in July 2001, we have found/felt that systemic treatments should be reserved until there are no other treatment options available if resection/ablation/radiosurgery are possible since there is unfortunately no currently available long term/permanently effective systemic treatment and cure for ASPS. In Brittany's case, we resisted systemic treatment until six+ years ago when she developed an unresectable/untreatable met in the head of her pancreas and systemic treatment was our only option and Hope to try to destroy/shrink the tumor. VERY thankfully, she has thus far had a very successful and sustained six year response to her Cediranib treatment and is to our knowledge the patient with the longest sustained stability on Cediranib in the World, but her Clinical Trial oncologist has told us that she may be macroscopically tumor free, but probably not mircroscopically so she could develop disease progression at any time. It is of course our greatest Hope that the Cediranib will provide continued sustained disease stability until a permanent treatment and cure can be found, and that it will be found sometime VERY soon.
I know that you have many other questions which I will be glad to address later, but I personally think that your greatest priority right now should be the unresected primary tumor.
Auston sounds like an incredible young man and I am grateful that he has the strengthening support and love of your family as well as a strong positive attitude which is so very important in fighting this disease. Please know that he and your family are not alone in this battle and that you have the special resource, support, and caring of those of us on this Board. Keep holding very tight to Hope and let it lead Auston and all of your family through each day.
With special caring thoughts, healing wishes for Auston, and continued Hope,
Bonni, mother of 33 year old Brittany diagnosed almost 14 years ago at age 19 in July 2001

[Andrew Ward]

So, Cediranib is not working. 4cycles of Cediranib and the marker points that they used for measuring showed a small growth, as in mm’s. Still awaiting the hard copy of those image results.

This is the short version of the scans so you can get an idea of size / respectability.

CT scan abdomen and pelvis:
There is a large right sided paralumbar mass, centered at the L2-L3 level, measuring 9 cm superoinferior by 8.5 cm AP by 8.3 cm transverse.

CT Chest:
The lungs show innumerable bilateral pulmonary nodules consistent with metastases. 1.2 cm nodule in the right upper lobe which grew 3 mm in a month and 1.2cm nodule in the left upper lobe which grew 1 mm in a month.

The doctor is saying that all masses are inoperable. He also says the lung mets are most likely ASPS. It would be highly unlikely that it would be some other cancer.

The doctor has suggested 5 weeks of radiation to the primary tumor in his pelvis. We start on Sept 28. The doc says, he is worried that it will grow into the spinal cord.

I have asked about RFA, Cryo Ablation, Proton, Gamma... To which I’m being told by the doctor that the tumors are too big for these treatments. The doctor keeps reminding me that this is about “quality of life”. I think he means that any treatment is palliative. This tells me that our doctor is not really thinking of fixing this.

I also asked about a lung transplant to which I was told that they would have to suppress Auz’s immune system and then the primary tumor would grow faster. He said Cryo would be like spot welding a rusty car.

So, lots of things swirling around the empty space in my head, one of which is “is it ASPS?” Ya, probably just wishfully thinking but, they thought it was Ewing’s until the pathology, and the pathology for ASPS looks like a rather complex procedure to me. Is a pathology error possible? (Ya, how many of these would one pathologist see, ever?) Has anyone done a second opinion? (No) Did it respond to Cediranib like 80% of the others cases do? (No) Would they tell me if they though there could have been an error? (Likely Not, given our litigated society) Is 1-3 mm’s a month slow? (Doesn’t sound like slow ASPS).... Well, am I crazy? What if the radiation shrinks that tumor? I just don’t know if I could look in the mirror if I don’t get a second opinion. But therein lies the conundrum, what doctor would give me a second opinion? Not too many sarcoma specialists around here (Ontario, Canada) and who’s going to give a different second opinion that would contradict “The Guy” (Professional etiquette and all)? I have approached other (2) Oncologists and they say that my doctor is “The Guy”, the same “Guy” who isn’t thinking of how to solve this. 

So awesome, ICure ASPS community, what doctor should I send scan results to? What else can I do?

[Olga]

It is unlikely that pathology Dx is wrong, ASPS has very distinct under the microscope appearance and a very specific translocation in it.
The second opinion could be taken from our sarcoma oncologist Dr.Knowling in Vancouver, BC at the Vancouver cancer agency, re. if ASPS histology warrants more aggressive surgical approach than the rest of sarcomas due to its slow growing nature.
But other (more preferred in my view) would be the second opinion from US based institution like Dana Farber in Boston, they have treated some of our patients and are usually ready to resect ASPS primaries even in presence of the lung mets as they know that it could prolong the survival. But the surgery there is expensive.
I would consult Dr.Littrup re. possible cryoablation of the primary tumor ASAP before starting the radiation - he does not need any referral from the oncologist, the info is located in cryo section
http://www.cureasps.org/forum/viewtopic.php?f=55&t=1003
there is no charge for the consultation with him, but if he says he can help, it is about 20K per a procedure, out of pocket and the max you can get is the tax deduction. Even if the cryo just shrinks the tumor allowing it to be resected later, it is still great although I agree that the size might be a problem. Call Derek and ask if you could speak to Dr.Littrup on the phone briefly.
Request a copy of the scan of the primary on a CD to be able to copy it and to send it for the second opinion. The scan belongs to a patient. Explain to an oncologist your moral dilemma so he accepts your reasons and helps.
There are cases when cediranib was not active in the beginning but the response improved with the time. Is it a clinical trial, is Auz taken off the trial now or remains on it?

[Bonni Hess]

Dear Andrew, Thank you for your thoughtful update. I am so sorry for Auz's increased lung met growth despite his four cycles of Cediranib treatment. Did he also experience increased growth of his large primary lumbar tumor? Unfortunately I am not surprised by his lack of a successful response to the Cediranib thus far since, as I told you in my previous post, based on my personal 14+ years of ASPS experience, research, and anecdotal observations it is critically important to remove the primary tumor to reduce the body's tumor burden and enable the Cediranib or any other systemic treatment to be as effective as possible. I understand that Auz's doctor " The Guy" is telling you that all of the tumors are unresectable, but I urge you to seek other surgical opinions including one from Dr. Fritz Eiber at UCLA in California who successfully resected a very difficultly located ASPS pelvic tumor from one of our young ASPS Community patients several years ago. I also agree with Olga that you should pursue a consultation from Dr. Littrup regarding possible Cryoablation. The primary tumor may unfortunately be too large for Cryoablation but it is definitely worth at least exploring with Dr. Littrup and he may at least be able to Cryo Auz's largest lung mets. I personally have concerns about the scheduled lumbar tumor radiation since ASPS is notoriously radiation rsistant and Brittany's post op radiation to her residual cervical/ thoracic tumor tissue devastatingly resulted in aggressive tumor spread up and down the spinal column necessitating an emergency paralysis/ Life threatening surgery which thankfully had a successful outcome only because of the great skill and expertise of the neurogical surgeon. It is essential that you be as well informed, researched, and knowledgeable as possible before moving forward with any kind of treatment. Insist that the doctor provide you with documented data which validates successful results of radiation treatment to shrink large ASPS tumors. Stay strong, proactive, and actively and aggressively reach out for additional medical opinions and advice. Keep in touch as you are able and know you are not alone in this difficult battle. With special caring thoughts, healing wishes for Auz, and continued Hope, Bonni

[Andrew Ward]

Olga: Thank You.
Yes it is a clinical trial...
NCT01391962 https://clinicaltrials.gov/ct2/show/NCT ... 962&rank=1

He has been taken off the trial and when/if he has the radiation then he will not be allowed back on that trial.

[D.ap]

Hi Andrew

Debbie here
Our son Josh was dx'd in 2012 and has been thinking of the trial for over a year
He has succesfully had his leg tumor removed and lungs cleared of over 150 tumors since late 2013--

Auz was in a trial that will switch to suntinib if he chooses to remain?
Bonni's concerns need to be considered as well

The primary truely needs to be considerd as well as the lung tumors.
It sounds like the primary most likely is not invasive to the spinal area today?

Sincerely
Debbie

[Andrew Ward]

Hi Debbie,

150 Lung mets removed! That is very encouraging new for us. We don't know how many lung mets, YET!

Yes, he should have been switched to Suntinib but our Doctor seemed to think this IMRT would be more beneficial even though it will exclude him from this trial.

"It sounds like the primary most likely is not invasive to the spinal area today?" All I know his he is still walking and functioning. He is now on steroids which has reduced his pain. Steroids are prohibited on the trial.

[Vega343]

Andrew, I feel for you! My 9 year old daughter is newly diagnosed and I too have found this website more helpful than the doctors in a lot of ways. We took the time to get 2nd and 3rd opinions (2-3 weeks) as there is so many options and things to think about. We are in the US, so maybe easier... We had an amazing response from Dana farber - just via email. I sent them our scans and medical files on a disc, as well as the pathology slide. They took the info to a regular sarcoma conference they have and it was discussed by the team. They also confirmed the diagnosis of asps with the path slide and sent me the report without me asking. The surgeon there agreed with what our omaha doc had planned, and what md Anderson had told us - so I was much more comfortable with moving forward here in Omaha. The oncologist at Dana farber also connected with our omaha oncologist to make treatment plan. This was all over email, and I have no idea what they are charging me. Md Anderson also has a program for remote consults, but I honestly just went there and they weren't helpful about asps.
I also want my kid to be a success story on this forum instead of palliative care, I have thought that so many times it makes me angry when doctors go there. There is so much to try, people have even had some success with chemo, so I figure we will just keep trying things until something works! One step at a time, and hopefully you can get someone else to give you another opinion. Especially since they are saying its inoperable! Take care,
Mj

[Andrew Ward]

Hi All,
It's now 19 ish months and counting. Lung mets almost clear. Can't see the primary on CT scans any more. He's up 175Lbs of pure muscle.
A picture is worth a Billion. Here ya go...
[img]

Lungs_Small.jpg (72.5 KiB) Viewed 11890 times

[/img]

[D.ap]

Wow Andrew and Auz
That's incrediable! Even the right side 13mm plus is gone.
Was it the one treated by IMRT or was that the spinal primary ?
I assume the first scan is Auz base scan ?
I missed the post to what Auz is taking
He had to go off cedirinib right ?
He got on the trial ?
Wonderfully great news !!
Love
Debbie and family

[Andrew Ward]

Wow Andrew and Auz
That's incrediable! Even the right side 13mm plus is gone.
Was it the one treated by IMRT or was that the spinal primary ?
I assume the first scan is Auz base scan ?
I missed the post to what Auz is taking
He had to go off cedirinib right ?
He got on the trial ?
Wonderfully great news !!
Love
Debbie and family

The lungs were all NCT02458638 !!!!!
Spinal tumor shrinkage cause is undermined since it was hit with IMRT and Atez.
You assume correct. Base for the trial start Dec 2015. The other is from Jun 2016. So, 6 months???
Yes, he got on the trial.... You rock, Dr R. (I know you read this stuff)
Thank You.

[D.ap]

Andrew
Thank you so much for info as I'm sure there are ALOT of folks out there needing this encouragement
What dose is Auz on ?
and is he doing anything diet wise as he weight looks to be great
Hugs to the doc from me too
We ALL our making great strides to combat Asps

[Andrew Ward]

Andrew
Thank you so much for info as I'm sure there are ALOT of folks out there needing this encouragement
What dose is Auz on and is he doing anything diet wise as he weight looks to be great
Hugs to the doc from me too
We ALL our making great strides to combat Asps

Dosing is available on line http://www.fda.gov/Drugs/InformationOnD ... 525780.htm
Eats five meals a day plus whey isolate and goes to the gym on his days off work. Fairly typical for a 20 year old male.