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Synovial Sarcoma - Online Support Group

Need help/suggestions


#1

Hello All

After three month follow up, my daughter has had a recurrence on her left lung adjacent to her heart(pericardium area). Size is about 6-7cm. She was operated today using debulking technique. The doctor was able to suck of most of the tumour with only 5% remaining. But even that is a lot considering the speed of SS.

We have been in touch with Dr. Sant Singh Chawla, sarcoma oncology centre. He hasn't made any suggestions yet as her reports are still been worked up for testing.

We can either put through trials or go for chemo sessions and then trials ?

Has anyone had reviews on with trials is better for SS in lungs ?

Immunotherapy or Aloxorubin ?

or if anyone has any other suggestions or experience to share, it would be of great help!!!

Thanks!


#2

Hello rk,
I had lung metastasis that dissappeared with chemotherapy. You never know what will happen because I found some people with different results. I have no idea what is best for your daughter but I couldn’t see your post and leave it without a reply. I wish you find the best for her as soon as possible.

Muna


#3

Hi,

My first SS was on my lower left lung. They removed that and we did radiation. That worked for 2 years and then another one pop up on my left chest wall. 6 inches in size. Went through 8 rounds of chemo and surgery to remove the tumor. Dr. said removed all he could see but was like scraping the bottom of a jelly jar. I knew what that meant. Had surgery in July 2015 and scan on 12/2 shows thickening of the chest wall. I know what that means.

The Dr. has me on Votrient which is suppose to slow growth of tumors. It buys time. Wish I could give you good news. I would definitely try chemo if she hasn't done so yet.


#4

I would definitely try chemo if she hasn't done so yet!

Never heard of the debulking technique... they cut it or how does it work?


#5

There are T cell therapy trials that you should look at - at the NCI, at UCLA, at MSKCC. These trials train the immune system to go after synovial sarcoma.

There is also an immune design trial as well with dendritic cell vaccines and PD1 therapy.

Hope this helps.


#6

Rk and her daughter live in India. Do you know if those companies have also trials in India? How easy is it for a foreign citizen to come to US for trials? I am curious as we have many members in Europe, Africa and Asia...

Projector_Boy2000 said:

There are T cell therapy trials that you should look at - at the NCI, at UCLA, at MSKCC. These trials train the immune system to go after synovial sarcoma.

There is also an immune design trial as well with dendritic cell vaccines and PD1 therapy.

Hope this helps.


#7

This is a question that pertains to many folks.

Clinical trials are not fully covered by the drug companies/institution doing a trial. The experimental drugs are covered. But other things such as labs, scans, etc. are covered by a patient's insurance. As such, patients without insurance have to pay for the scans, labs, etc. which would be a burden for the majority of foreign patients. Also all clinical trials require follow up for months/years after - so foreign patients at the onset mostly would not be able to meet this requirement except in rare cases.

Of course, anyone can buy commerical insurance in the US.

The Adaptimmune and Immune Design trials are not in India at this time.


#8

I would definitely go with chemo first. Its something that is tried and tested and they know it works. My chemo shrank my tumour by huge amount before surgery, so it might shrink this. If she has already had doxorubicin she can’t have more, but you can have more ifosfamide (i’ve had it twice and it worked very well both times) there’s also gem/tax, pazopanib (not so good at shrinking but can keep things stable) and trabectedin.

Michelle x


#9

I had numerous tumors in both of my lungs (spread from my pelvic tumor). My left lung was so bad that it had to be drained twice in one week. My doctor put me on Ifosfamide and Doxorubicin chemo. I was 37 and the chemo worked. The tumors in my lungs either shrunk or disintegrated. The 3 lung tumors that remain are dead and my breathing has returned to normal. My pelvic tumor is still active and we are trying different ways to treat it. The Ifosfamide and Doxorubicin are very harsh chemos, but they worked! I finished radiation and am now trying Lartruvo. It is a new chemo that was released in October. The side effects have been very minimal. I am tired and have slight headaches on days 3 and 4 of my chemo cycles.


#10

wish you all the best