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Synovial Sarcoma - Online Support Group

New here, new to SS


#1

Hi everybody,

I'm newly diagnosed with SS, primary in my left lung (both lobes....lucky me), and metastasis in the hilar lamph nodes. Currently recovering from my third round of chemo (doxorubicin and ifosfamide). I'm fortunate to have wonderful meds that keep nausea away, but am still currently working/learning what to do for all the other symptoms that accompany chemo.

Next week we will scan again to see if the chemo is helping me achieve clear margins for the hilar lymph nodes. I believe I currently have clear margins for my left lung, but it will be because they can take the whole lung out. If the chemo is working, I'll have three more rounds of this chemo regimine, then surgery. Hopefully that will be when I am clear, and return to my normal life.

I was thrilled to see that there are survivors of this specific cancer, as apparently we are a rare group! I look forward to learning more tips for dealing with treatment from current survivors as well as our veteran peers!


#2

Much love, courage and prayers for your journey.

Synovial mom


#3

Welcome Sonnut! Both lobes have SS, does that mean there are 2 tumors or one tumor making a bridge between the lobes? Do they intend to take both lobes out? That sounds scary although my surgeon told me she's done it on one of her patients :-(

Do they intend to try radiation therapy if chemo doesn't work?

Good luck with the scan! I hope they are able to do the surgery with clear margins...


#4

Hi Sonnut,
My son was diagnosed w/SS in his right lung in March of this yr. he had his bottom right lobe removed & has had six treatments of doxorubicin & ifosmafide, which he finished up in August, w/very good results.
He is doing great! He goes for a scan tomorrow & we expect it to be good. I have read of cases that have gone into remission, & I think he will be one of them.
Stay strong & positive. U r half way there! Good luck!


#5

Yeah, both lobes have tumors. Apparently, I have "innumerable" tumors, with a 4.7 cm in the upper lobe and a 6.6 in my lower lobe among several smaller ones. They can have my lung, I'm okay with that if it means I'm clear. I've heard people are perfectly fine with one lung. I believe we've discussed radiation after surgery as a precaution, I just want it out...

We're doing chemo for clear margins in the lymph nodes so I'm excited for my scan Friday. We'll do a full PET again before surgery just to double check things.


Elodie Espesset said:

Welcome Sonnut! Both lobes have SS, does that mean there are 2 tumors or one tumor making a bridge between the lobes? Do they intend to take both lobes out? That sounds scary although my surgeon told me she's done it on one of her patients :-(

Do they intend to try radiation therapy if chemo doesn't work?

Good luck with the scan! I hope they are able to do the surgery with clear margins...


#6


Wonderful news about your son, hope his scan is perfect! It's encouraging to see a similar case as mine with such encouraging results! :)
Sheila said:

Hi Sonnut,
My son was diagnosed w/SS in his right lung in March of this yr. he had his bottom right lobe removed & has had six treatments of doxorubicin & ifosmafide, which he finished up in August, w/very good results.
He is doing great! He goes for a scan tomorrow & we expect it to be good. I have read of cases that have gone into remission, & I think he will be one of them.
Stay strong & positive. U r half way there! Good luck!

#7

Thank you! :)



Synovialmom said:

Much love, courage and prayers for your journey.

Synovial mom


#8

I am 19 years cancer free in my neck 1995,Keep the faith.IT IS CURABLE.


#9



beechreader said:

I am 19 years cancer free in my neck 1995,Keep the faith.IT IS CURABLE.

Hi can you tell us what treatment you had and how big was your tumor when diagnosed and also where did you receive treatment. Thank you.

Synovial mom


#10

Hello and welcome. This group is extremely supportive and informative. Good luck!


#11

I had 6 cm tumor in my right side of my neck.In my right parapharengeal space.went to Fox Chase,University on Pennsylvania,Hanneman,And Sloan Kettering Hospital for Options and Inforation.All agreed it was rare and only radiation was an option at that time.Except Fox wanted to do chemo.Doctors said not enough information or trials because it's so rare.


#12

Nasty chemo! Stay positive, you will get through this! Our son is now on Pazopanib 400 mg for already over a year and doing great after his long surgery.