Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hello,

I have spoken to a few people from the asps group on Facebook I just thought I’d come on here also as I can have all responses saved so I can show my oncologist too if I need any help!

I was diagnosed in September 2020 with an 8 x 6 cm tumour in my right leg on the hamstring, it was removed with clear margins and I had radiotherapy to my leg after surgery - 30 sessions.

I found in September 2020 also that there were multiple tumours in my lungs and they think it’s over 50. They started at just under 2cm
I started atezolizumab in January 2021 and so far have had 16 infusions (I have been on a high fibre diet also) and they have recently confirmed the tumours are growing and nearly doubled in size, biggest one is roughly under 4cm

They are saying I should start anlotinib

Is there anything else I should do I have requested cyroblation but because they are all growing none are stable they think it’s not a good idea

I’m so worried :(

Hi
welcome to our board.
I am sorry to hear re. progression. It is a hard news to get.
Where are you located? how many of the lung mets are bigger than 20 mm now?

Hi Geeta,

Welcome to the forum .😊

When did you embark on your high fiber diet ?
What kinds of foods have you incorporated?

Did your 30 sessions of radio therapy result in any skin damage issues ?
One last question, how old are you ?

Olga wrote: ↑Thu Jan 06, 2022 11:59 pm Hi
welcome to our board.
I am sorry to hear re. progression. It is a hard news to get.
Where are you located? how many of the lung mets are bigger than 20 mm now?

Hi Olga I’m sorry for the late reply

I am located in England, there are roughly 4 above 20 mm now closer to 30-40cm

I have just been told I may not qualify for the anlotinib trial as one of my tumours is close to a blood vessel and they will get back to me. The waiting is horrible, I am not sure what to do, I’m feeling really breathless now also and I feel like after atezolizumab it’s made it worse, really scared

D.ap wrote: ↑Fri Jan 07, 2022 7:28 pm Hi Geeta,

Welcome to the forum .😊

When did you embark on your high fiber diet ?
What kinds of foods have you incorporated?

Did your 30 sessions of radio therapy result in any skin damage issues ?
One last question, how old are you ?

Hi Debbie sorry for the late reply,

I had lots of lentils chick peas veg berries and nuts

Yes it did my wound from surgery opened it was so painful. My skin was all burnt. After my first infusion of atezolizumab I felt fine for one week and I had my first covid vaccine pfizer. I had an awful response all of my lymph nodes were swollen all around my head neck underarms and groin area, a fever and this did not come down without steriods, I then had to take steriods for 5 days and I was fine after this.

I’m 27 now and was diagnosed in sept 2020 at 25 years old

Hello Geeta,
Remind us if there was any kind of response from the atezolizumab infusions.

Any lung tumors that resolved ?
Be sure and use this time to up your nutrional intake to boost your immune system, while trying to get answers on your next move .

Ivan and Olga have composed a topic to aid in doing just that .

https://cureasps.org/forum/viewtopic.php?p=13425#p13425

It’s a work in process, so it’s all about here and now , to make changes .
Get a opinion from a interventional radiologist/pulmonologist maybe ?
To what they see as a viable way to take care of the most obvious needed , easily treatable lung tumor (s)?
It maybe that the others, other than the more vascular located one , can be treated to at least lighten your tumor load , which in turn could allow another ICI and or your previously used atezolizumab to take care of the tumor they are saying is not a candidate for your alontinib Med .

I suspect they will want you to move to some type of Med and I’d look into other immune check point inhibitors, that you can stay on while having your offending lung tumor(s) treated .

Is your leg still inflamed from the radiation? Or is that totally resolved now?

How would you say your overall condition is physically? Are you sleeping well? Are you able to exercise at all?

Have you been given antibiotics?

Hi Ivan

No inflammation totally healed

I’m really breathless right now I can’t exercise and I have oxygen at home if I need it

I do get breathless going up the stairs and even getting up to go to the toilet it’s really got bad, one year ago I didn’t even have any symptoms, so you think this could also be effects from immunotherapy?

Really scared and hoping my breathlessness goes because I love to exercise

I havnt been given antibitocs I do cough up flem but it is clear.

At this point you would need some kind of radical intervention to physically eliminate some of the biggest lung mets, the ones that restrict your breathing. Consult the good level thoracic surgeon re. VATS or open surgery. It would allow to continue with the treatments after the healing from the surgery is over. Ivan had 5 lung surgeries during the course of his disease. You can of course at the same time request the evaluation from the interventional radiologists re. possible cryo ablation of the bigger mets but I would say the size is to large for this treatment modality. And consult the radiologists, the most advanced ones you can find, re. irradiation of the bigger lung mets. All of this would be less desirable than the surgery to physically remove the bigger mets that obstruct your breathing and to allow you to continue with the systemic treatment.

Hi Olga sorry for the late reply

They are saying they can’t do surgery as there’s over 50 tumours in the lungs, they can’t give me anlotinib or cediranib because the tumours are too close to blood vessels, now I have no idea what to do I am sooo scared

Hi Geeta
What has the interventional radiologist said ?

Hi Geeta, I realize that they can not to a definite surgery i.e. it would be unlikely any surgeon is able to remove all 50 tumors. I am talking about the palliative surgery to remove the tumors in question that are stated to prevent you from having the systemic treatment. VATS surgery or any image guided ablation or radiosurgery to these tumors. It has to be re-evaluated from this point of view but it takes a lot of effort to consult many different thoracic surgeons and interventional radiologists re. possible options to reduce the tumor load.
You have to understand that most of our patients had to fight to get a treatment they needed as ASPS is a very rare sarcoma and its behavior is different from the rest of sarcomas. The overall treatment guides are based on the other, fast growing sarcomas. So your argument would be that in usual sarcoma case, with the mets number like this, there is no time room for the interventions, but in ASPS there is still enough time to make a room for other systemic treatments or just to improve the quality of life.

Any trial you can join for this: https://www.nature.com/articles/s41586- ... _83ByovlpY ?

It's very promising