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SS of plevis , now mets lungs , chemo advicse


#21

What kind of treatment though? The issue is that without surgery, there isn’t any treatment that’s known to cure synovial sarcoma. You’re dealing with a chronic disease. Treating too much may kill you faster and make you more miserable. If it was me, I wouldn’t do any chemo while the tumors are dormant. May be some type of ablation would be worth it. But you have to find a doctor willing to do it.


#22

Thank you , yes I too asked them for the surgery. they told since multiple , both the lobes impossible for this proceure, should take chemos lifelong
. my surgeon told to take ctscan after first chemo. I took ct scan , found no response , My medical oncologist told not to take any ctscans until three chemo are over. After second chemo my surgeon asked to repeat scan. Took scan and found no response. My medical oncologist told stable condition.
After third chemo , my medical oncologist told stable and chane line of chemo.
My surgeon told stop chemos and observe the condition. But I took fourth chemo high ifos.
No change and stooped chemo.
After 3 moths took ctscan no change . My radiologist told the drug exists in the body for some time hence stable condition.
My medical oncologist told after 4 monhts of stooping chemo to take biopsy again , may not be sarcoma.
Now I want to meet an expert in chronic diseases to rule out this problem as you said for some abalation


#23

Ablation techniques are performed by interventional radiologists in the US. I don’t know about India…


#24

Thanks for this information , I will try my best to identify them


#25

recently I received my pet ct fdg uptake value the largest nodule showing 2.8 in a scale of 1 to 41 what does this mean


#26

also I wanted to know how the nodules will grow if at all in a person . will they grow continuously slowly/rapidly or all of a sudden over within 10 days grow rapidly and then maintain stability . please help me to indentfy the characteristics of the nodules though it varies from person to person


#27

The growth rate of nodules is non linear and unpredictable. A tumor can be growing slowly for many years and suddenly grow aggressively. Reverse is possible too.
Regarding PET scans FDG uptake, here is an article that explains the complexity of interpretation:


How are you feeling so far?


#28

thanks for your concern towards me.
my nodules are stable upto march ct scan. in the month of april I developed some wheezing and took citrezen tablet after waiting for three weeks.
the wheezing stopped after one day of the tablet.
in april middle I took a xray observed difference and took ctscan in may 2. the doctors told that there is a small increase in four nodules. iam now on second line of chemo gemcitabine ad doxe. very toxitity ifelt , I think my blood counts are fallen down.
on 26th I will have my second line .
my last four chemos did not decrease the size of the nodules. they said stable disease . I donot know what will happen this time. I donot know the connection between my nose and the nodules which is the only symptom I had from the beginning. doctors cough is the symptom. but I always have wheezing and running nose
thanks for all the support. and I did not understand this article.
I donot know how pet ct is used for chemo response. can you tell me in my casse when should I go for pet ct.
I had it in October 2016 and 4 chmos some gap and now fifth chemo. can I take after fifth chemo to see the response or wait until 6th chemo.


#29

Nodules don’t necessarily cause symptoms. Mine never did. Your wheezing and running nose probably have nothing to do with them. It sounds more like allergy…
Your nodules didn’t show a high uptake on your previous PET scan. They may not be hungry for glucose. They may be feeding on something else. Who knows? But then what would be the point of following up with PET scans? Aren’t CT scans good enough?


#30

my protein leves and blood levels are good complete blood picture until this last chemo. in ct scan there is no indication for necrosis or septal thicknening or tissue death. no lymph nodes involvement too.
the noduels size had increased by 10% by two nodules and just 2% in the other two nodules.
but iam taking chemo. when should I go for chemo response.
is it after one cycle or two cycles.
I thimk my x ray is showing good because all the remaining nodule are the same except these four which I can see in even an xray also
please tell me how to know and when to check for chemo response
thank you so much for all the support.
I again took my pet ct values and asked the biopsy madam for explanation she told that since iam a known case of synovial sarcoma she concluded suggestive of spindle cell neoplasam instead of confirming the disease and
better to go for second time biopsy or gene test for x chromosome transclution.


#31

Regarding biopsy, I never had one on my lung nodules. After removal, my pathology reports usually would conclude the nodules were consistent with synovial sarcoma but never reported of any test like FISH or dyes to confirm the diagnosis. Once, one of my nodules was not consistent with synovial sarcoma but with scar tissue. I have to assume that as long as the shape of the cells are consistent with synovial sarcoma, the pathologist normally doesn’t look any further and bases its conclusion on patient’s history…
Most of my nodules did not have a high uptake on PET scans and as far as I know, it’s not unusual with synovial sarcoma.
What does your oncologist recommend for checking tumor response? I am not sure what’s the standard schedule for checking it but I’ve heard of patients who were checked after 2 cycles, others after 3… Although Gemcitabine and Doxetaxel are not considered very effective for synovial sarcoma compared to other sarcoma, I never heard a patient complaining of aggressive growth during that regimen.
Good luck!


#32

thank you , I had a couple of doubts , which I would ask after my blood tests on monday


#33

Reading all of your posts… I would highly advise you to talk to your doctor. Your doctor would be able to answer all of these questions because he/she is aware of your situation and what you are going through. Each case of SS is so different. You need to be able to discuss your situation with your doctor. We (those of us on here) only know about our own situations and what we have read about others. My doctor was able to explain to me that surgery to remove lung modules would be a bad idea because of having to crack the chest open. It is a major surgery that would not cure anything. The nodules will be back. I have over 32 nodules in my lungs and a pelvic Synovial Sarcoma that measures 18-20cm. Please talk to your doctor so you can feel more comfortable and trusting about the treatments that you are seeking/receiving.


#34

since jan 10 2017 iam not on chemo. when took in march they found to be stable. but in april my xray looked different and had a ctscan in may. I found my two nodules which are 2cm earlier now are 25mm . the other two before are 15mm now 18mm/15 I donot know because a blood vessel contrast enhancement may also can be the reason for increase in size. any how my doctors said they are progressing. so took 3 chemos gemcitabine an doxetal. my oncologist said no considerable change , but my radiologist said seems to be decreasing but only a ctscan can say correctly. my surgeon said better take a pet ct now.
all of them said to continue chemo after ctscan / pet scan
my doubt is whether to take petctscan or ct scan now and I want to take some gap , since iam unable to tolerate this , iam having blood in my motion sometimes and very pain while going to motion. some piles/fissures I donot know.
please suggest me what to do ,
I want to take a ctscan /pet scan and observe the result. If there is not remarkable change in the sizes like atleast 50% reduction I will not take any chemo
please suggest me whether iam correct or not
I want to take a gap and again take chemo. so shall I take ctscan /pet ct now or after sometime. is it true that x ray will not speak about whether the sizes are getting down , I took xray after every cycle
please reply. did any one had this kind of situation


#35

please reply , kindly suggest me


#36

thanks for the suggestion , did you take chemo
tell me about your chemo protocols


#37

Dear Elodie
since jan 10 2017 iam not on chemo.
when took a ctscan in march they found to be stable.
but in april my xray looked different and had a ctscan in may
immediately. I found my two nodules which are 2cm earlier now are 25mm
. the other two before are 15mm now 18mm/15 I donot know because a
blood vessel contrast enhancement may also can be the reason for
increase in size. any how my doctors said they are progressing.

And asked to wait for a month.

I took a ctscan in june and found no increase stable,

but my doctor asked to take chemo and I took 3 chemos gemcitabine an doxetal.

Now

My oncologist said no considerable change from my xray after two chemos,
but my radiologist said seems to be decreasing but only a ctscan can
say correctly how much percentage.
my surgeon said better take a pet ct now.

all of them said to continue chemo after ctscan / pet scan

my doubt is whether to take petctscan or ct scan now and
I want to take some gap , since iam unable to tolerate this , iam
having blood in my motion sometimes and very pain while going to
motion. some piles/fissures I donot know.

please suggest me something like I had two options

1.,
I want to take a ctscan /pet scan and observe the result. If there is
not remarkable change in the sizes like atleast 50% reduction I will
not take any chemo
please suggest me whether iam correct or not. I want to take a gap
and again take chemo.

I want to take ctscan /pet ct after sometime. and depending on the
values I will decided to take chemo or not

is it true that x ray will not speak about whether the sizes are
getting down , I took xray after every cycle
please reply. did any one had this kind of situation

Thanking you


#38

A CT scan or PET scan will give more details than an X-Ray. Your plan sounds right to me. Let your doctors know you would like to have a break from chemo if your tumors look dormant. Your quality of life is important too.


#39

thank you very much all the kind suggestions


#40

I also have SS in the pelvis and lungs. My story is kind of sad… I did Ifosfamide and Doxorubicin then radiation then immunotherapy/Lartruvo and Doxorubicin. I have finished with all that and found out the Doxorubicin and ruined my heart. :sweat: If I had stopped one cycle earlier, who knows where I would be… I was feeling good until then… my lung tumors are growing like crazy. I have signed all the paperwork and am in home hospice for now. My advise is stop the chemo and spend the good times with your family and do something you enjoy.