Lili from China-DX May 2012

[zhoujuhua]

HI,everyone
First of all,apologize for my poor English.
My name is Lili from China,and I'm 23 years old now .I'm very glade to join this big family where many friends exchange their experiences and advice about this very rare disease.I benefit a lot from reading about everyone's advice and experiences. I want to share my story and statues of my health and treatment , and want to seek some suggestions.

I was 20 years old when I found a soft tissue mass in the left hip subcutaneous and then the resection was performed in May 2012 .The primary tumor was about 5mm*5mm, postoperative pathology: alveolar soft tissue sarcoma.
After the resection, Pet-CT was done , multiple mets were found in chest. In September of the same year, I received two courses of chemotherapy and the effect is not obvious. In October 2013 and January 2014, I received pulmonary metastases laser assisted surgery twice in Dresden, Germany lung specialist hospital, the number of the mets was 174,the biggest one is 18mm,and pathological results is ASPS. Unfortunately new mets were found in chest CT four monthes later(May 2014), and several new mets were also found in sacral vertebrae and pelvis in whole body MRI examination. After one year, review chest CT, the mets rapid regrowth, and distribution is given priority to with the subpleural and postoperative scar area. I received argon-helium cryoablation surgery in Mar 2015, and I suffer from pulmonary edema. I had the sacral coccygeal vertebra canal tumor surgery in Shanghai Shanghai hospital in April 2015 , the tumor size is about 34 mm,and pathological results is ASPS. And the mets in ilium didn't receive any treatment, we just accepted Chinese medicine adjustment from then on .
I appreciate any thoughts or advice. Thank you so much for reading!

Sincerely,

Lili

[Olga]

Hi Lili, welcome to the forum. You have already contacted many of us using the Private Messages tool provided by the board, so you already received a lot of private answers.
I have a question about the pulmonary edema - did they find it just recently after the cryoablation or soon after the surgeries in Germany? Ivan also had some pulmonary edema after his extensive laser assisted resection in Germany but as the time went, his lungs recovered. Usually it took about 6 months after the laser assisted surgery for the lungs to get back to normal, but he was very active trying to get the lung function back - breathing training and overall physical strength building, lots of cardio exercise.
I also urge you to seek a local treatment for the mets in ilium. This bone is thin and can be broken when the mets destruct it, but if the mets are still relatively small, they could be probably treated by the cryo or microwave ablation or by the radiosurgery. You should also ask your oncolgist re. bisphosphonates - the drugs that slow the growth of the bone mets.

[MartinBube]

Hi Lili,

My name is Martin and I'm ASPS patient myself.

I read your story and I saw that the primary was 5x5mm, is this a mistake, perhaps it was cm. If millimeters than this is very small size, how did you noticed this?

[zhoujuhua]

Hi Martin
I am so sorry for your having this cancer
Yes,you are right,I wrote 5*5mm by mistake,it was 5*5cm.It had been found over half a year before it became more and more big,and local medical doctor suggested me removed it.
Have you ever heard of the combination use of PD-1 and Halaven?
Thanks for your caution and hope your more communication.

Gods with you

Lili

[zhoujuhua]

Hi Olga

Thanks for your advice and care.My father will take me to treat the mets in ilium by the radiosurgery after I feel better. Pulmonary edema Had faded basicly.
Now,I'm hesitating wheather to combine use PD-1 and halaven.I wanna know if there are people in the use of this combination therapy and can share their experiences. I appreciate any experiences、thoughts or advice.

sincerely

Lily

[Olga]

Lili,
there are few drugs of this type - PD-1 and PD-L1 targeting drugs - that are currently on trials. What drug is proposed to you? Is it a clinical trial? We only have few people trying this type of drugs at the moment and they are on the following clinical trials:
search at the https://www.clinicaltrials.gov using the number
in Canada:

NCT02261220 A Phase 1 Study of MEDI4736 in Combination With Tremelimumab
NCT01693562 A Phase 1/2 Study to Evaluate MEDI4736

in US:

NCT02301130 Study of Mogamulizumab + MEDI4736 and Mogamulizumab + Tremelimumab

[jenhy168]

Hi Lilli,

I tried Nivolumab (PD1) for 3 months and it did not work for me, but the effect of drugs can be different for each individual person. There are minimal side effects compared to other drugs. It may be worth trying for you...

Best,
Jen

[zhoujuhua]

Hi,Jen

Thanks for your advice,I will take it into consideration.

Best wishes

Lili

[zhoujuhua]

Hi Olga

Thank you for so much concern and advice,I will take it into consideration.The website you provided is helpful, I will give attention to it.

Best wishes

Lili

[zhoujuhua]

Hi everyone

Yesterday I had a wholebody scan and I'm feeling very bad.The number and size of mets in lungs are more and bigger than before.A new met was found in left kidney ,it's size is about 2.2cm .There ia also a micro nodule in liver ,it's size is about 6-7mm. Several mets in pelvis is similar with before.

I am at a loss and don't know what and how to do. Who can tell me what to do next and What is the best method? I love my family and my friends around,I want to stay with them.

Gods with everyone !

Lili

[Olga]

Hi Lili,
the mets in the liver and kidney can be cryoablated, but do not wait as the size in the kidney is getting to big. After they are treated, you can to look into the clinical trial or TKI treatments - pazopanib, cediranib. What is the size of the mets in the pelvic bone?

[zhoujuhua]

Hi Olga

Thanks for your advice.there are several mets in ilium,the biggest one is 2.3cm,and I haven't do any treatment.there are 116 mets in my right lung,while 85 mets in left lung. Whether it should be removed surgically?

sincerely

Lili

[D.ap]

Hi Lili

My heart goes out to you. It's scary .

What trials do you have available to you from your area ?
Ivan , Olga's son, had 190 plus tumors and Josh , our son , had over 140 tumors

Taking care of the most serious tumors ONE at a time sometimes , keeps us focused and busy so as to help us not worry as much.

Hi Lili,
the mets in the liver and kidney can be cryoablated, but do not wait as the size in the kidney is getting to big. After they are treated, you can to look into the clinical trial or TKI treatments - pazopanib, cediranib. What is the size of the mets in the pelvic bone?

What Olga said before ,about bone met(s)


"I also urge you to seek a local treatment for the mets in ilium. This bone is thin and can be broken when the mets destruct it, but if the mets are still relatively small, they could be probably treated by the cryo or microwave ablation or by the radiosurgery. You should also ask your oncolgist re. bisphosphonates - the drugs that slow the growth of the bone mets."

[Olga]

Lili - I have a question about the number of the mets in the lungs. On the CT scan the smaller (few mm) round scars from the previous laser assisted surgery can not be distinguished from the new small live mets - they are going to look the same, small and round. Only if they start to grow, they can be identified as mets for sure. So my question is - are they all growing? If they appeared on the scan after the surgery Dr.Rolle performed, most of them are scars. You need to take the scan that is the next after the first post-surgery scan and use it as a new base line scan. Identify which ones are growing faster, cryoablate the ones that are bigger than 10-15 mm.
Consult re. radiosurgery treatment in the pelvic bone.

[zhoujuhua]

Hi Olga

Thanks for your concern.Nodules which distributed along the scar are bigger than befoe ,so I'm sure they are all mets.It is said that the side effects of TKI treatments are obvious and they are tend to be drug resistant.Since my condition is getting from bad to worse, I am afraid if the side effects of TKI treatments would further reduce the quality of my life .

Best wishes

Lili