Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi there everyone!
I found this forum by facebook group and decided to post my story as well, hope u guys don't mind but I'm total newbie if it's about all sarcoma, drugs etc and I know only few things from my doctors and internet. Anyway..
I'm 21,I found lump in my left lover leg in March 2021, then waiting, waiting and waiting, and after noticing quite growth and no response from my local doctors about it I made myself MRI on my own and then with suspicion of sarcoma I went to Sheffield Sarcoma Unit, where after biopsy they confirmed ASPS in November 2021, tumour around 5.4cm. In December I had a surgery - they removed it with clean margins (removing also one of the muscles from my calf) and they were planning radiotherapy after leg would heal.
However further scans showed that it spreaded to my lungs - numerous small tumours, they don't know how many exactly as they are tiny, the biggest 2 right now has 13 and 17mm (God thanks only there until now!) so they resigned from radiotherapy. They got me quite worried with speaking to me about average lenght of life 12-18 months, also with words that 'now is treatable only rather than curable'
They recommended me to go on Anlotinib trial, so I am - after all check ups, I'm starting on Monday. I'm now treated at Royal Marsden Hospital under Prof. Jones- who i heard and from what I see it's good specialist. He was a little more optimistic about my case than oncologist before him, with hopinig even for at least little shrink of my tumours, but obviously, they cannot be sure or promise me anything.
Right now after clearing my mind since November, I feel like I really wanna fight for myself!
So here I'm - telling my story and asking you, veterans in this fights, about any protips, advices, any gold rules what to do's and don't 's with ASPS.
I believe that people here have actually more knowledge than even doctors about how to deal with this cancer to squize my options to the maximum, not only poor 12 months! So please if any of you would like to help me in any way, with any advices, or even with just a good word from yourselves, then feel welcome to write here, on in private message.
I will be more than happy and more than grateful!! :)

Hi Sandra, welcome to this forum. Lets start from the most important fact. Survival with ASPS is usually much longer than 12 months and only ppl with the limited knowledge about its slow growing nature can say that. Especially since there is a treatments to try and procedures or surgeries to destroy the mets that are bigger to buy more time to live and to combat this sarcoma. I will not also downplay the dangerous and relentless nature of this sarcoma, but you know what? there is no infinite survival or cure for any human life or disease, it is just a mirage.
You can review all the patients stories here, who tried what and with what result.
As a main rule of our board - use only evidence proven treatments, or the ones that seem not to harm such as good lifestyle and wholesome food. Even if they won't help you with sarcoma treatment, they will help you to go trough the treatment and be physically able to have them.
Use PubMed to search for the med info, at least the articles there are pier reviewed.

Hi Sandra,
Welcome to the forum .
Since I’m not familiar with the trial rules , do you know how often scans are performed and if you can go off and on the trial while treating possible growing tumors ?

I didn’t see in your post if you’ve had a brain scan ?
MRIs are the best in my understanding, as they have the best detail of the smallest possible Mets .

Ps I’d contact a surgeron and or what’s to referred to as an interventional radiologist, to look at your lung scans to see if they are treatable IF they start to grow .
Our family never lets their guard down when we find with the scans growing tumors ,we immediately become proactive and have a plan(s) to get rid of them.

If meds can’t get rid of tumors with meds ,then a person needs to take that normally slow growth time to address the growing of the found tumors .

One of the limitations of the clinical trials is that it usually does not allow any other treatments to the indexed lesions, and I am pretty sure that the biggest ones are going to be designated as the targeted to measure the response under the clinical trial criteria.

So basically now I will have scans every 3 weeks + all blood samples and echocardiogram this will be until 7 cycles (one cycle of treatment is 3 weeks) and then scans will go every 12 weeks if everything will go as planned. All trial rules are very strict starting with who can take part/ your overall health condition etc.
From what they told me here I can participate in trial until they see that is working - which means either shrinking tumour or at least stopping growth. Right now when they did my scan my lung mets was 13 and 17mm big, so now every time they will compare new scans to this measurements and if they will grow about 20% then they will take me off from trial because is not helping in my case and then from what i understood they will be looking for other drugs options or surgery. I hope I made it a bit more clear for u :)
Also they have told me from the beginning surgery is not a good option for me because it's still too small and it's an option if they will grow bigger and right now they claiming anlotinib to be the best option to control my asps.
I had a brain and neck MRI which came all clear. About my chest they were doing only CT scans until now. Idk I'm wondering if shall I have done anything else like PET scan etc? I believe my doctors doing great job and they know ASPS nature but I'd rather ask yours opinion, should I check anything else? Also wanted to ask about high fibre diet? Any of you recommending it from experience? Or it's just part of healthy lifestyle and not actually helping with cancer situation? Also if u are so tired as well most of the time? I'm and I'm concerned about it that it can have connection with my cancer, however my doctors says that medically my health is in great condition (besides ASPS, but it doesn't give any symptoms yet as is so tiny) and idk what to think if it's just my mental health and anxiety which makes me so tired or it's something else?
Anyway thank u all for your responses!

what is the trial timeline for the 20% growth, does it have to happen between two consecutive scans 3 weeks apart?

Also if u are so tired as well most of the time? I'm and I'm concerned about it that it can have connection with my cancer, however my doctors says that medically my health is in great condition (besides ASPS, but it doesn't give any symptoms yet as is so tiny) and idk what to think if it's just my mental health and anxiety which makes me so tired or it's something else?
Anyway thank u all for your responses!

Hello again Sandra,
You’ve been thru a lot the last 4 plus months . Surgery and then diagnoses of ASPS.
I’m sure your exhaustion is warranted. Use this time to beef up your health and take time to get plenty of rest .😊

How’s your incision healing ?

Doesn’t matter the timeline for growth, just 20% bigger = stop trial, no matter if it’s in 3 weeks or 3 months or so.
Yeah those few month feels already like few years to be honest, so many informations and questions around yet not many options, however now I’m back with clear head after all that processing.
My leg healed really nice right now it’s just a scar but I’m trying to take care of it the best I can, but as I said it’s all healed and closed. It’s only that I’m getting swollen around ankle when I’m spending long hours on my feet and also had an appointment already about that and I will need to wear a compression socks for some time now, besides that it’s all fine :)
I’m a little worried and I will discuss it today in hospital about scan my leg, because after surgery I hadn’t got any scan of it yet and I would like to know if it’s all clear or something is back there.

Morning from USA, Sandra
Two things -

Swelling … are you staying hydrated? Walking plenty ? This is week 12 ish from surgery?

Scans - I venture to say the scans will probably show inflammation and a void at first ? If surgery pathology showed negative margins then I’d feel pretty secure about there not being reoccurrence of the tumor . But I’m not a doctor.😊

yeah I'm trying to stay hydrated and walk more but not pushing myself too much either. From what they've said to me last time probably it's lymphatic fluid stays there and that's why I need compession socks to pressure it more and then hopefully will go away.
I'm happy to hear that u think that way about it! Maybe u right and I shouldn't be too worried for now as it's too early to say :)
Also I started Anlotinib trial on Monday so it's 6th day today and until now I don't have even little side effects! I hope that's a good sign and will stay like this! I will update in here once they scan me next time and will receive second cycle! :)

Good luck with the treatments and no side effect, we are rooting for you!

Hello Sandra

I had 2 surgeries, one to remove the primary tumor and that was used for diagnosis in 2015. Afterwards I had more radical surgery and because more tissue was removed there was some kind of fluid in the area that remained empty, this lasted a month or more. I was going twice a week at the hospital for check up and some fluid was drained.

Maybe this is similar but because in the leg the manifestation is different. Hope that you will get better soon.

Hi Sandra, like you we are also from the UK. My daughter was diagnosed 6 years ago and her primary was also in her lower leg (calf muscle). This was also removed with clear margins but unfortunately has also spread to her lungs.

She has been on cediranib for 5 years which has kept her pretty stable with some shrinkage. She is under the Royal Victoria Infirmary in Newcastle. All the history / details can be found on here should you wish to read it but forget about the 12 month survival rate. They said something similar to us at the start which is rubbish. X

Hi Sandra,
How are you doing ?
Were you able to start Anlotinib?

Geeta is also on Anlotinib and in UK.
https://cureasps.org/forum/viewtopic.ph ... eta#p15852

Melanie is also in the Uk but her daughter Ellie is on cedirinib.

https://cureasps.org/forum/viewtopic.ph ... nie#p15976

Love,