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Synovial Sarcoma - Online Support Group

Lung mets are growing


#1

Hi all, can I ask some advice? I have more than 10 lung mets spread in left en right lung since August 2016 and had doxorubine 6 rounds. Which helped and schrunk the mets in half size. Scan in september 2017 showed growt up to 1cm several tumorspots. My oncologist adviced me no to take any medicine so i have had 3 good months! He sad, probably after the next scan you start pazopanib.

Last scan result yesterday showed 3 mets are growing, now to 1,6cm. The rest is growing very slow. My oncologist again adviced me not to do take any medicine. Now i just wait 3 months again. But now i don’t know if that’s a good idea…

What would you do? Thanks in advance!

Kind Regards,
Sanne


#2

You should see a surgeon to remove the nodules. My daughter had several but they are too small for removal. I am scanning every 8 weeks and as soon as they can be removed I will do that.

Radiation is another option at that size but the only real cure is removal.


#3

Netherland is supposed to have good sarcoma specialists, or at least good synovial sarcoma researchers at Radboud University Medical Center. Leiden University Medical Center has also good specialists. Another opinion may be worth it.
You may want to look into laser surgery in Germany. Laser surgery allows to save more healthy tissue than conventional surgery because it doesn’t have to make a slice in the lungs to get to the tumor and therefore, the number of tumors is not a limitation. Here is where they do it:
http://www.fachkrankenhaus-coswig.de/zentren/laserzentrum/laser-centre.html


#4

Thank you for responding! Yes, I am at LUMC which supposed to be one off the best. Surgery was never an option because the mets are in both lungs, more than 10, say 15 tot 20 or so… I check the laser. I also read that proton radiation also doesn t harm the healthy tissue, do you know? I have a call back from my oncologist on monday and preparing all my questions. He metioned the trial CMB305 but i don’t know if i have NY ESO, it’s being tested but it takes a month. Thx for thinking with me and sorry for my English :slight_smile:


#5

I believe CMB305 trial will start mid 2018. You should test if you are NY-ESO-1 positive in the meantime since it could be useful for the future.
Proton radiation is relatively new and is not available everywhere. I haven’t seen any retrospective study for sarcoma. You can check previous discussions on the subject using the search button (I know some members tried):
http://www.synovialsarcomasurvivors.org/search?q=proton%20radiation
There is also SBRT to consider and there is a retrospective study here: