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Synovial Sarcoma - Online Support Group

The longest period of remission in SS


#1

Dears
I’m curious to know who’s the longest in remission diagnosed with SS…
Can you all please raise you hand on how many years of remission you’re in


#2

My husband was almost 3 years in remission when the cancer came.back to his lungs


#3

My tumor was 3 cm in my soft palate. My entire soft palate was removed and I went through 33 rounds of radiation at 66 grey. I have been cancer free for three years in June, but my last lung scan came back weird. My last scans (in March 2018) came back with serious hard palate erosion which lead to a biopsy (came back clean); however, the lung scan was not great. I go in for a three-month follow-up CT of the lungs to see of those get biopsied…
What I am wondering is, synovial sarcoma is notoriously chemo and radiation resistant. My radiation was a “kill anything that moves” procedure since they could not achieve clean margins with my surgery. They wanted to kill enough tissue around the tumor to make up the margins. I am seeing people who have or are receiving chemotherapy. Is this adjuvant to surgery or is the chemo actually supposed to be treating the cancer?

They tell me if I have a recurrence in my lung, I will have spot radiation. Has anyone had or going through that?


#4

Hi so sorry to hear about what you’ve been going through.
As far as i know through research chaemo is effective in treating synovial sarcoma -apparently not as effective in other forms of sarcoma. When it does work it does so by helping shrink a tumour as well as ‘mopping up’ any other tumour cells that may be left in your body. It may be worth looking into cryoablation if it happens to be that you have small lung mets. Maybe look into your options before your next scan as its imperative that you deal with any lung mets asap. When i was researching for my partner who has synovial sarcoma i came across a book by someone who had SS i found i got a lot of useful information from it - Curing Cancer With Immunotherapy, i got it on amazon .


#5

Thank you for the info…this cancer (all cancer!) sucks! Good luck to yoi​:+1::+1:


#6

My husband is on cycle 5 and his tumors in his lungs have shrunk. There was concern with his heart because they were giving him doxorubicin but they are monitoring it.


#7

Hi,

I was diagnosed with synovial sarcoma of the neck with a +3 cm tumor between my throat and spinal cord.

I had surgery, chemo and proton therapy. Thank God I am 6 years cancer free going on to 7.

God bless


#8

I am really glad to hear your sucess story ,it is a real motivation for me to fight this rare disease.

Last month I had diagnosed with rare synovial sarcoma of Right kidney with extented tumour to IVC , post surgury tumour had been removed successfully. Now I am looking for best hospital/approach /Dr for further treatment as there are contradictory views about the treatment among the Drs…can anyone help me on this !!!


#9

Hi,

You will find a very different approach depending on the clinic and believe it or not, the geographical area.

I traveled to different clinics and met with multiple Drs. I decided to stir away from conventional radiation and chemo recommended by MD Anderson. Did Proton therapy combined with specific chemo.

Under normal radiation you have terrible and permanent side effects.

I could not be happier for having made the decision. Even my surgery. I learned three days before my scheduled surgery that a Dr in Mayo Clinic was doing a less invasive surgery. All surgeons I met with wanted split my jaw and go directly through the throat. My surgeon went in through the side of my neck. Almost zero side effects.

Because of the location of my tumor a lot of Drs gave me a bad prognosis and some wanted to place me in trials. Thank God I did not follow their advise. I am 6 years free and clear.

All in all, make sure you fight back and the best way is to make an informed decision. I can assure you I would not have made it if I followed some of the Drs I met with or I would be living with great disability.

I am happy to expand or answer any questions you may have.

God bless


#10

Thanks to all so far responded,
It’s sad that every hospital every hospital have a different approach of treatment and if we’re lucky we’re saved.
My son is only 11 yrs, I pray that God is leading me in the right path. My child finished his surgery and doing his RT now. Dr said no chemo needed at this point. His chest is clear but with some fibronodular opacities they call it which should be ok but to be monitored closely.
All success stories I hear so far is 3/4/5/6/7 years… Aren’t there anyone like 30/40 yrs or so…is it just that we don’t have them in this forum?? Just my thought…


#11

Hi Panamajack9516
That’s fantastic! I agree with you that we all need to ask lots of questions to best make informed decisions. Can i ask you do you know type of SS you had - Monosaphic or bisaphic and ssx1 or ssx2? Did you have clear margins? Many thanks


#12

Hi,

Mine was monosaphic, ssx2 and I did not have clear margins.

Please let me know if I can help in any way.

Regards

Sergio


#13

Thanks so much for your reply and information! Hopefully like you all will remain well with my family member. I’ve already researched the best option should she get lung mets down the track and it appears the best and least invasive for small mets would be cryoablation along with immunotherapy drugs. I cant believe that many surgeons tell patients to wait and watch the growth - we certainly wouldn’t be doing that!Unfortunately here in Australia cryoablation isn’t offered for SS but i know it is in the US and UK -for a hefty price. So if we do have more problems down the track i may take you up on your offer of help to locate a very good Doctor re cryoablation. Again many thanks Sergio and continued good health!


#14

Thank you for your wishes!

I pray that your family member does well. And please do let me know if I can be of any help.

Sergio


#15

Hi there. Hopefully, you’re getting my notes. Is your husband in the hospital as we speak? Mine is…I’m here with him. He has a 14 cm tumor lying on his lung. It hasn’t matastasized. But it’s really big, obviously. He is doing his 2nd out of 6 chemo treatments and tomorrow they are starting radiation, too…hopefully, in about 6 -8 weeks, he’ll have his surgery…


#16

Hello no he is not. He is on his 5 cycle of chemo the tumor have shrunk in his lungs but r still there. He is doing the red devil…doxorubicin.


#17

I was in remission for 2 years, from 2010 to 2012. Relapsed "12 in my leg, chemo and surgery, relapsed in '13, same protocol. In 2014, it spread to my lung, and have done 4 different chemos and surgeries until now. I’ve gone to MD Anderson from the beginning, and last week they said they exhausted all the chemo available for SS. I’m looking at immunotherapy or experimental treatments, but I’m so over it, I might just go until the cancer is causing me pain and hang myself. We will have a better idea within the next month.


#18

Gosh, I have no idea about the years…I would love to hear that people have beat this disease and we free from it from 30-40 yrs or even better, the rest of their lives!


#19

So sorry to hear about the hell you’ve been going through just awful. So do you still have lung mets? Is that the only place you have mets? Have your doctors looked at removing lung mets with cryoablation? I read doing that is possibke depending on size abd location of lung mets, folliwed up with immunotherapy can be very helpful.


#20

I had a tumour on my left foot and did an amputation followed by Chemo last year. Completed one year now by the grace of God. I have been following a page in Instagram Darren Barber. She is an amputee and a 30 plus year survivor. She is amazing.
I believe the longer survivors are not in this group probably! We will all make it there :blush:
God bless