SS of plevis , now mets lungs , chemo advicse


Misty- Thank you for sharing your story, even though I bet it is hard to share. Enjoy spending time with your family, we are thinking of you!

Meli from Moderator Support


I took ct scan , and

it seems that there is no considerable increment since march ctscan and no significant decrement when compared with May ct scan ie from 3 cycles of chemo.

in march when I took ct scan they told stable since October 2016.

But one of my nodule is 2x2x2cm in October 2016 , now when I measure it appeared 2.2x2.5x2.9 cm
I thought they will tell increased in size , but they told no significant change

And dear all I had a doubt from these multiple opinions from the doctors that is

will the size of the nodule appears increased when a blood vessel/fissure crosses very nearer by to it and finally we feel that the nodule had increased in size but the doctors knew that there is no increase , .

Please help me


Thanks for the suggestion.
When ever I take ct san iam very afraid and iam taking chemos , tll now I took 7 chemos
please tell me something more about you like how many chemos you took , is there not any change in sizes of the nodules , how did you identified your pelvis tumour and any thing more please tell me if possible


My son did AIM, radiation, and surgery the first time. With his relapse, he has tried to get on trials but is having a hard time. His dr at MD Anderson is putting him on Dox and Olaramutab, but we are hoping only for a couple of cycles until he can get into a promising t-cell trial. It’s to buy time and not just keep doing nothing. Misty, I hope you can enjoy some good time with your family and pray for peace and comfort for you all.


please give me some sugestions for my current status


sruthi, you’re having a really difficult time with this, and I’m so sorry. I’m Seenie, and I work as a lead moderator for all of Ben’s Friends thirty patient support sites. I don’t have synovial sarcoma, so I can’t comment on your situation. We are not doctors here, so we really can’t give medical advice, but there are many members who, from their own experience, are very knowledgeable about SS.

The questions that you ask are really ones that you should ask your doctor. If you don’t know what to do, or how to make the decisions, perhaps you could try more direct question to your doctors: “If you were me, what would you do?” That may cast a different light on your questions. One thing I know: you have excellent doctors in India.

One person who knows a great deal is our moderator Elodie Espesset, who at the moment is travelling without reliable internet access. Please don’t think that she is ignoring you. When she returns, I’m sure that she will post.

All the best to you

Seenie from Moderator Support


The report from your radiologist should state whether there is a significant increase in size. Sometimes what looks like an increase may just be due to a different angle at which the picture was taken. A radiologist would know better how to interpret an apparent increase.
Even if the increase is real, it looks like it’s really slow growing, not a case where chemo is most effective. If it was me, I wouldn’t do chemo and would try to enjoy life while quality of life is still good since they have nothing better to offer…


Dear Elodie
Thaking you so much. I too prefer the same. But iam afraid , now got so much confidence. My radiologist too said no considerable increase without chemos and no considerable decrease due to chemos
Thanks , i will take a ct scan after 3 months again