Synovial Sarcoma - Online Support Group

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


Hello Elodie
Iam very much confused. Please help me in giving some kind thought
from all of your experiences
I took Gem+Dox three cycles from june to august 2017 even though my
radiologist said no difference since last chemo in. jan 2017 As my
oncologist wants i took.
My radiologist ignored my pleura thickeness slighlty seen in june 2017
ctscan , my oncologist said sub pleural basal nodules increasing in
size so take chemo.
but after three cycles in august ct scan and in jan 2018 pet ct scan i
found plueral thickening .
it is increasing since august 2017 upto now and it is present in the
four sides corner sides of both the lungs.
my oncologist said to take the next line of chemo.
in pet ct scan none of my nodules (nearly 30-40) had NO FDG uptake and
the SUV of the largest two noduels (3.5cms) had 4-5 of SUV and the
remaining nodules are having uptake less than 3 SUV
did any one knew about pleural thickening .
My pulmonologist said to have a blood test for infecction in liver and body
my C-Reactive Protein levels is 23
please help me is this pleural thickening. Is this due to chemo or is
it a scar disease.
No new nodule is seen since 2016 october the first time i saw this
disease and all my noduels had grown tiil today they are less than 1cm
in 2016 now all are 1 cm and above and less than 4cm
even in my first pet also no uptake and now after 14 months also no pet uptake
please help me did any one had this peural thickening and that to
nodullar thickening
please help me


I am not a doctor so I don’t know how they tell the difference between pleural thickening and pleural effusion. I do know of synovial sarcoma patients who had pleural effusions due to the disease. What is the next line of chemotherapy your oncologist wants you to try? Your nodules are slow growing but they are still growing and that’s a serious concern…


Dear Elodie
Thank you ,
you may not be a doctor but your experinece will help me to understand
the condition along with the advises given from the doctors here. As
all of us knew the behavious of this disease is very peculiar and is
not the same as ones seen earlier.
even in my case how it behaved in 2016 is diiferent from in 2017.

please understand me
It is said that the lining is having an extra thickness. No signs of
any fluid . The radiologist confirmed it to be thickening after pet
ct and ct scan .
Can you suggest any other scan like ultra sound from your experience
in this site.
yes my nodules are growing , especially lower parts of the both the lungs
surprisingly one biggest nodule in 2016 had reduced its size by 6mm
i donto know whetehr this happens in any other cases.

please give me some information on plueral thickening , its treatments
taken by any of us here that you know
can antibiotics course would help , my docotr said to try with a
little of such course and then go for the thrid line some thing which
starts with the letter T idid not follow properly

please help me


Is the drug Trabectedin? It is also called Yondelis. We had a member here who was taking it for 5 and a half years. It worked quite well for her although it hasn’t work for most other people.
I am not sure about pleural thickening. I have not heard of anybody here mentioning it. It may be worth a second opinion. I guess a small course of antibiotics would not hurt.


Thank you Elodie
Today i had an appointment with doctor.
I had a mass in Pre sacral region too they said benign Some MRI signal
T2/STIR may be fat /mass PET had no uptake. SUV 4-5. It is pressing
my nerve to leg and pain during nights. Now these two i have to handle

Gem + Dox gave all bad to me when compared to IFOS+ Ader+mesna which
is somewhat good ,no signs of bad.

since after stopping GEM i had no signs of bad now.

But they are growing slowly , may be after this presacral mass removal
i will take chemo if doctors suggest.
please tell me anything you know about C-Reactive Protein levels in blood .
Does this CRP in blood suggests entire body infection levels or only
liver infection.
please tell me if you know anything about Ultra sound to chest

Thank you so much


High CRP means you have inflammation in your body. It is not necessarily due to bacterial infection though. I suppose it could be due to synovial sarcoma. I looked at my past blood tests and I couldn’t find one where CRP was measured. May be other members had this test done and could comment on their CRP level.
I found this article about chest ultrasound which explains about its uses:

I hope this helps…

Good luck!


Dear Elodie
Thanks a lot , i will share after the doctors appiontments are over.
My presacral region mass iam meetig the doctors , they said to take
xray after i finished my MRI , PET ct also , i donot understand why.
Xray showed nothing everything normal. they told they will call me
tommorrow regarding biopsy.
i had to wait and see
thanks a lot for all the support


Dear Elodie
do you know anything about the biomarkers for synovial sarcoma
please help