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Synovial Sarcoma - Online Support Group

SS of plevis , now mets lungs , chemo advicse


#1

I have 30 lung nodules in bilateral lungs in all lobes
PET CT showed low FDG uptake by the largest left nodule of size 19mm. I had four large nodules 10,12,18,19mm size. 70% of them are small than 8m.
completd 1 chemo. doc said 10% reduction in the largest nodule from the ct scan. had xray before 2 chemo and 3rd chemo. x rays couldnot show some nodules which are there in xray to:smiling_imp:ok before 1 chemo
about to go for review on 17th dec. may be for ct scan and assessing
wish me good luck and pl comment any suggestions


#2

When there are so many lung mets, it’s generally not possible to do conventional surgery because too much healthy tissue would need to be removed. There are some alternatives to conventional surgery. Some people have tried laser surgery in Germany, formerly performed by Dr. Axel Rolle. With laser surgery, lung mets can be resected without having to remove too much healthy tissue. But it only works for so long. Usually more mets will show up after surgery. There are other types of ablation, typically done by interventional radiologists, for example, cryoablation (cryosurgery), RFA (radiofrequency ablation), LITT (laser-induced thermal therapy), microwave ablation, FUS (focused ultrasound). I don’t know if anybody here has experience with any of these procedures.
The chemo you just had (doxorubicin+ifosfamide+mesna) is the conventional first line therapy. High dose ifosfamide often works well in synovial sarcoma and may be used as 2nd line treatment. Another chemo that is currently commonly used as 2nd line treatment is votrient aka pazopanib. Yondelis aka trabectedin is another option.
Then there are clinical trials…


#3

thank you for the information. pl tell me about high dose ifos means. now iam given the same but did not understand the difference between this and high dose ifos means. do they change the line because iam having only small reduction factor. I heard something bad about votrient . is it really good to take.
I heard my doc speaking something like gema… not clearly understood
is it possible that the nodules disappear . pl tell about the low FDG uptake in my case. had anybody took chemo even if the PET CT showed low mobility like in my case.
Thank you


#4

High dose ifosfamide means you would get a higher dose given over more days.
Some people are stable for a long time on votrient (a year or more). The problem is that when they stop it, the disease sometimes become very aggressive :frowning:
I am guessing your doctor offered gemtax (gemcitabine+taxotere)? It doesn’t work that well in synovial sarcoma but it can work good in some other types of soft tissue sarcoma.
The nodules could disappear with chemo but generally, they would grow back after you stop chemo. A low FDG uptake is not unusual with synovial sarcoma, especially when the nodules are small. It may be related to low aggressiveness of the tumor but I am not sure.


#5

thank you for the information
had review on 17th dec iam tensed what my doc will say
meet here again after that review


#6

All the four chemos went well . but my doc said that the ct scans shows no change in lungs since last 6 months.
they asked to stop chemo and wait and see what the nodules are. any help


#7

It could be that the nodules went into a dormant state and the chemo is not useful in that case because it only targets fast dividing cells. It would be a good time to try to resect them somehow if at all possible…


#8

thanks for the info. can you help me about the meaning of superficial location and superficial nodule


#9

Do your nodules have a superficial location in the lungs? Superficial is supposed to mean on the outer surface. This might be good actually.
Imagine your lung is a watermelon. If the nodule is at the surface or close to it, you don’t need to cut much of the watermelon to remove it. But if it is located deep inside the watermelon, then you have to remove a big piece of watermelon to get it out. A superficial location is therefore the optimal location for removal since you can spare more healthy tissue…


#10

Thank you so much for the info. The pulmonologist doctors said that the nodules are such. They are saying since the nodules are looking round , well shaped , smooth borders and no color change , and no change in size , number since last five months , why to puncture the good lung.
but my medical oncologist feel that since iam on chemo , the stability might be.

biopsy is not done yet.
There are nearly 30-40 more of smaller size <8m and a few of size > 8mm. one largest is 19mm.
they are saying wait for a few days observe and if necessary biopsy my medical oncologist say change line of chemo.
no plan yet decided.
I want surgery , but even though they are superficial , I had 30-40 nodules , Iam searching for a surgeon parallelly.
any similar cases you heard
suggest anything


#11

Your oncologist is right to think the stability might be related to you being on chemo. It’s likely that the nodules will start growing once off chemo but who knows?I know you’re in India and I am not sure what’s available out there. If you can find a surgeon that is willing to get them out, that would be great but I have never heard a case with 30-40 nodules all superficially located…


#12

some are deeply located and many are superficial
but I donot know why they donot go for surgery


#13

I had a ctscan in march and the nodules are the same in size and number. Since septmber 2016 this is the same. My medical oncologist says repeat the biopsy since a sarcoma can never be like this. my pulmonologist said notto take ct scans until otherwise the picture changes in the xrays and xrays are sufficient
can any one help me in this case


#14

Have you been off chemo since January? Did you have a biopsy in September?
X-rays don’t give as much details as CT scans. Whether your medical team wants to see details depends on whether details are important to their decision making. I am under the impression they do not have many options to offer…
It sounds like you either have slow growing or dormant synovial sarcoma nodules or something else. It’s relatively good news either way.
Lung biopsy is not commonly done for synovial sarcoma metastases. I am assuming there are reasons for that. The risks may be considered too high. You may want to talk to the surgeon about risks versus benefits. How will a biopsy impact the decision making depending on the results? Is it worth the risks?
Also, you may want to get a second opinion, if at all possible…


#15

Yes they did the biopsy but the madam told that she couldnot conclude anything from the small 1-3mm tissue. Since she found abnormal growth and as known case of synovial concluded mets.
My oncologist said to repeat it since it might not be the mets .
The pulmonologist said since the largest nodules are seen in xray , its growth can be determined from xrays, until otherwise some abnormality is seen we can go for ct immediately.
I stopped chemo I January.
I took ct in march no change in the number ad size of the nodules.
Do you know anything about circulating tumour cells for this case
thanks for all the support


#16

Looking at circulating tumor cells is something new. It’s not known yet what to do or infer from the information obtained…


#17

Is it not that whether the tumour is responding to the treatments , or like whtehre it is progressing or coming down. I donot know , in india it is not available, simply I wanted to find whetehr thiswill be usefull for me and if usefull use the persons acroos the world for me for this treatment.
Any idea about MRI whole body to get more info about my suspicious nodules in the luns
Thankas a lot for all
Please comment somethong about my doctors opinion on the biopsy report like abnormal growth concluding lung mets and now reordering for the biopsy
please


#18

Regarding circulating tumor cells, the hope is indeed to be able one day to determine whether a treatment is working and so on. But blood biopsy is still in the early research stage and it will probably take years before it becomes useful to the patient.

MRI is not well adapted to the structure of the lungs although it’s good to look at the rest of the body. You can find some explanation here:

Regarding your biopsy, I wonder if they even obtained the correct tissue. Was the shape of the cells removed consistent with synovial sarcoma at least? Why would a second biopsy be any better than the 1st one? Could they do a surgery instead of a biopsy? I guess not because there are too many nodules? The other option is to wait and see what happens. If it is synovial sarcoma it will grow eventually but in the meantime you can enjoy life without treatment…


#19

Thank you so much for the suggestions.
Indeed I approached one online opinion about my case here , it is a very good of international standards . Out of my personal request they agreed for reviewing my ctscans becaouse their opinion is only based on earlier reports.
They reviewed all ctscans pet ct scans and asked me where the lesions are in the lungs , from where they biopsy is done. /did doctors told where the leisions are found since they couldnot identify them in my scans
I really surprised with this because I donot any thing about this , I had nodules and assumed the disease. since pathology report said since abnormal cell hence concluded that thesee are spindle cells and since known case of synovial sarcoma , lung mets
now I approached one center here where they told that for 6ml of liquid biopsy , the ctc for normal is 5-6 above numbere will be suggesting for tumour cells presence , hence some treatment should be planned
hence I asked you about ctc
thanks for all the help


#20

the center is in nashik in india