Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hello everyone.
My name is Ana Maria, I am from Romania. And this year I started the fight with ASPS.

I will tell you my story briefly.

In 2017, during pregnancy with my first child, I noticed a "gall" on my left thigh. I didn't give it importance, I told myself I would go to the doctor after I gave birth.
4 months after the birth I find out that I am pregnant again so I postponed the investigations for myself.

In July 2019 I do a soft tissue ultrasound. The gall is described: hypoechoic formation of 60/50/35 mm, located in the muscles. The surgeon tells me it's a lipoma.

-18.02.2020 I had surgery on my thigh. the surgeon . 7.5 / 5.5 / 4mm gallbladder resection
-following the biopsy I was diagnosed with alveolar sarcoma
-I did immunohistochemistry they conformed a biopsy, and KI is 3-5%
-on 25.03.2020 I did PET CT which captured lung micronodules, the largest node is 7mm
-on 02.04. I make another surgery for safety margins
-on 16.04 I did an MRI thigh, only serum
-on 25.04 I did an MRI head, a clean one came out
-on 21.04 I did CT ( abdomen, pelvis, thorax) where the lung metastases were confirmed. Described several micronodules, the largest being 11.2 mm. Small liver lesion 6/7mm. 7/5 mm ostecondensed lesion at the left acetabular level, left renal cyst 36/30/36 mm
-Following the recommendations of the oncologist, I started to do foot radiotherapy on 21.04.20-03.06.20 (IMRT-VMAT).
-on 10.06 CT (pelvis, chest, abdomen, head). Liver, 4 lesions, the largest of 0.78 / 1.13. Coxal bone ossification on the left side 0.67mm. Lungs, 31 nodules described, the largest 0.55 / 0.82mm (the 11.2mm was not found). Hemangiomas vertebral bodies T10 T11. T11 osteocondesation.
- on 16.07 MRI of the thigh, only serum
-on 7.07 I started the treatment with votrient, 800mg / day. for one month of treatment I had no side effects

In Romania there are no doctors or clinics specialized in sarcoma. I have no treatment plan other than votrient. immunotherapy is not approved for sarcomas. I already feel lost. the oncologist I go to is not convinced that I have metastases, or does not want to tell me. physically, apart from the occasional back pain that goes to paracetamol I have nothing. however, my psyche is down to earth, I don't want to leave my children now.

Hi Ana Maria, welcome to our board. Your story is sad but it is very typical for ASPS to be misdiagnosed, it happened to many of our patients initially.
ASPS is a very rare and slow growing sarcoma and most oncologists never met a patient with it in their practice, but it is well studied and we have lots of information about it.
As of now, your treatment is done correctly, the same way it would have been done in any more advanced clinics. The primary seems to be resected with the good quality. The pazopanib treatment is often offered to our patients as a first systemic treatment (one of the TKI such as sunitinib, pazopanib or cediranib). Immune checkpoint inhibitors are not approved for sarcomas anywhere but many our patients are getting it either on a clinical trial or off label by the special request by their oncologists directly to the pharmaceutical company (need to contact Merck office in Romania) or trough the health system (you usually need to fight for it as we did in Canada) - the information is provided in the systemic treatment topic
http://www.cureasps.org/forum/viewtopic.php?f=76&t=1482
Also review the topic re. Metastatic Disease Treatment
in many cases the single most active metastases need to be treated separately.
http://www.cureasps.org/forum/viewforum.php?f=36
I would also look for the sarcoma oncologists in Romania for the second opinion and consultation. There is always some good oncologist that is more skilled in sarcomas, any country.

Hello Ana- Maria
I’m truly sorry that you are faced with the diagnose of ASPS, after your birthing of your 2 babies .

My name is Debbie and our son was dx’d at 32 years of age . He is currently 40. 😊

May I ask how old you are ?
Are you on vitamins to aid in the return of your hormonal balance ?

As Olga has previously stated , ASPS research has brought a lot of studies and treatments ,AND I’ll add hope, to aid in the management of our common sarcomas treatment .
Your doctors are doing a great job

Write when able .

thank you very much. I am 32 years old. Debbie, I'm doing this treatment because I refused chemotherapy and it's the only one settled by the state. I also read here about chemotherapy, and we also talked on Facebook. apart from votrient I take nothing. I don't know what vitamins to take. olga, as you said, metastases are treated individually, but should I wait? I was thinking about having a liver ablation

Hello again Ana-Maria,

When we last talked on Facebook , you hadn’t gotten your lower follow up pelvic scans performed .
How long ago was your last child delivered ?

Consecutive pregnancies are no easy feat .😏
My husband and I had all 3 of children within in a 4 year time frame.
To recover from the pregnancies , certainly is a process .

https://www.google.com/amp/s/www.huffin ... b_8739254/

From the above article -

“According to some experts, it can take up to two years for your abdominals to fully recover. Three big factors that can prevent this recovery, causing an abdominal distention are: Having two babies within two years (or falling pregnant within two years of the last pregnancy); gaining a large amount of weight during pregnancy; or a C-section (C-sections can cause internal scarring or adhesions which can add to abdominal distention).”

How’s your leg healing up for you?

Hi
On facebook I am Stoenica Ana Maria
I have a boy of 2 years and 11 months and a girl of 1 year and 8 months. after the births I recovered in maximum 6 weeks.
the foot is well healed, I have no pain, it is good.
I have had back pain for 8-10 years, I didn't have a cause. now CT scans show osteocondensation and hemangiomas in the spine.
I still hope I don't have metastases everywhere

You will need to be rescanned after 2-3 rounds of the pazopanib to see how is your disease responding to treatment, before asking for any local ablations. I would scan lungs (chest CT) and spine (bone scan or MRI) and liver (abdominal MRI), all with the contrast.
The optimal size for the local ablation treatments is about 10 mm.

Thank you very much for your support.
today I'm going to a neurosurgeon to see what he can tell me about the spine and pelvis.

I have seen that immunotherapy in some cases can work wonders, I am determined to do immunotherapy, if it is not possible through a clinical study, I am seriously thinking of selling my house.
I have not yet spoken to any oncologist about private immunotherapy.
is the genetic test done on the tumor or on the blood ??
here I can do at genecor or fudationeone, what do you recommend?
to have surgery before immunotherapy or not? how do I get a better answer?
most of all I would like to be compatible for opdivo (it is the cheapest :)))

For the immune therapy you do not need to test the tumor, in ASPS there are good responses regardless of the PD-1 status.
You should contact Opdivo and Keytruda makers offices in your country to ask re. compassionate access programs if they have any, or for the clinical trials.
We have supporting info here:
http://www.cureasps.org/forum/viewtopic.php?f=76&t=1482