Synovial Sarcoma - Online Support Group

Recent treatment experience with lung mets? Could an infection in the lungs be mistaken for SS

After nine months of going through treatment, Bk left amputation, and two re sections in left lung I went to my first three months checkup to be told that now I have multiple nodules in m y lungs. A couple they had detected before but were stable have now grown FROM 3mm to 6mm, and from 4mm to 9mm. The rest are new and have reached 6mm in 3 months. Of course I felt devastated. I thought I had paid my “pound of flesh” for some months of quiet recovery. My doctor is putting me on Votrient, and wait to see if the nodules keeps growing. I have read the posts about Votrient in this forum and would like to know three things that some of you may know.

  1. Could some you share recent experiences with lung mets treatment?
  2. How could this happen so fast? Could some of the new nodules be caused by an infection and not be mets?
  3. Is there an ongoing push to revive the now defunct CMB305 project which seemed to be very effective for SS?

So sorry to hear your news. I hope someone with similar experience will give feedback that helps you.

What Was your initial tumor size? Was it high grade or so that it recurred so fast I suppose… Was it synovial sarcoma or other type? Didn’t they do pet scan to look for Mets at initial diagnosis?

Please keep us posted…


I have also many mets in my lungs.

  • Got Doxorubicine 6 cycles and it schrunk from 8mm to 4mm. Than 6 months stable.

  • After i waited a while and it grew to 16mm. Then i got radiation SBRT for one fast growing spot.

  • then ifosfamide 6 cycles and had schrink 3mm. It grew after 5 months again.

  • votrient. 5 months stable disease.

  • right now i am on cylaex, (doxo liposomale) 4th line therapy… we will see. Scan in 2 weeks.

Did you hear about anlotinib study fase 3? I know 2 patients with SS have stable disease for 5 months and counting. Anlotinib can inhibit more targets than other RTK inhibitors can, including sorafenib, sunitinib, and pazopanib. Sounds better than votrient??? I hope this helps a bit. Good luck!!

Xx Sanne

Thanks so much Sanne. I went through six MAID cycles before amputation. Nurse said I had reached a lifetime dosis of Adriamycin, but doctor says we can go back to it if we need to. MAID did not shrink my tumors, but given recent mets, it may have kept them stable. I seems that Votrient has that aim too, stabilizing rather than remisión. Correct? Will tell my doctor about Anlotinib, thanks again for sharing.

Hi Mito, yes SS confirmed through SS18 transmutation. Have done 4 PETS, 6 mri, and 4 CAT with and without contrast, plus multiple x-rays. They took out surgically everything they could see, that it why it has been so devastating to find new ones in only three months.

Yes votrient can stabilize. For some people for 2 years! And also can give shrink a bit.

The liposomal Doxorubicine i use at the moment gives more protection for the hart. Doctor says i can have 6 cycles ( after 6 cycles doxorubicine solo).


IHi Sanne,
Have been reading your previous posts and learning a lot from your experience. I one of them you mention Proton radiation and in a response somebody else mentions Laser in Germany, cyber knife, and SBRT. I mentioned Proton radiation to my doctor (had just heard about it but know very little) and he looked at me with a “that’s not going to happen” look. I guess there are very few machines and a long waiting list with many more “urgent” cases than mine. Have you had any experience with the others? Any reason to do, or avoid, them?

I also mentioned proton therapy to my doctor. In Holland they do it a lot more now. And only the tumor will be radiated. Not the tissue arround it. But it s still “a young” therapy. Only if i have too many spots, the doctor will not even discuss it with the team. If i had the money, i would defenatly consider it.

Nanoknife was too risky for me. With high voltage in my lungs close to my hart.

The laser therapy in Germany: looks good also. Capable thorax surgeon. I had 3mail contact with him. In my case, primary tumor in my leg is back. And nodules in lymfe, i wouldn t do that either…
And doing meditation and supplements which i know it helps🙏