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Kiwi's?


#1

Hi everyone, just wondering if there any New Zealanders in this group?
I think I have come to the end of free chemo drugs here so am wanting to know what steps other people may have taken. I’m researching Pazopanib but it isn’t funded for Synovial here and is super expensive, even if I were to import from overseas.
Would love to chat with you about your experience with treatment here in NZ and what meds you have gone through.
Regards, Myrnal :slight_smile:


#2

I wish I could help you find other members from New Zealand but with the migration to the new site, I can’t filter members by country anymore. Also by default, members do not receive notification unless the topic is in the News category so I am going to change your topic category to News. It could take a week before members receive the notification though :frowning:


#3

Hi Elodie! Thanks for your reply and thank you for moving this to the right category. I only just happened to see your comment in my emails now. I guess there aren’t any people from my part of the world here sadly. Have you tried pazopanib by any chance? Because of the cost I am constantly researching and thinking about whether this is something I should do or not. Would love your perspective on it or any meds for that matter :relaxed:


#4

I haven’t tried pazopanib aka votrient myself but a lot of people have on this site. You can find many discussions on the subject (use the magnifying glass at the top right of the page for a search). My take on it is that many patients with synovial sarcoma experience long term stable disease with this drug (sometimes longer than one year) but many times when they stop the drug for whatever reason, their tumors become extremely aggressive. May be that’s why the trial showed the drug improved progression free survival but not overall survival…
As far as other drugs, synovial sarcoma tends to be sensitive to ifosfamide. Some patients are also sensitive to trabectedin (yondelis).
Do you have metastases or your primary tumor can’t be fully removed?
May be HIFU could be an option if your tumor is still just in the chest wall:


The article is from China. I don’t know if they would accept to use such technique in New Zealand…


#5

Kia Ora Elodie,

I apologise for the suuuuper late response. I am hopeless with computers!

Thank you for your response. I ended up not trying pazopanib. I still couldnt get money for it and my Oncologist advised it wasn’t worth all the stress. Ive never head of trabectedin, Ill look into and ask my Dr. also.

I guess technically I do or did(?) have Metastatic cancer, as the primary site is in my chest wall but I also had excess fluid in my lungs which I was told was an effect of the tumour. This has all been taken out and nothing has been seen there since. So im unsure if I would still say I have metastasis or not?

Parts of my tumour have grown quite close to my spine already so the surgeons I’ve met with are very hesitant on performing surgery while its in that position. I was advised to do what I can to shrink it for a better chance at surgery. Therefore Ifosfamide was introduced. I had my first round 2 weeks ago. It’s horrible and its making me re-think chemo altogether. But maybe Im just being a big sook haha

Im also curious to know what your thoughts are on alternative treatment and if you have any suggestions? There’s not a lot of treatment outside of radiation and chemo thats funded in NZ, or thats being offered to me by my Oncologist at least. Im still very confused and scared about my cancer to be very honest, so any advice/info is appreciated. Thank you for the HIFU link.

God bless,
Myrnal :slight_smile:


#6

Ifosfamide can be sometimes efficient at shrinking synovial sarcoma so it’s worth the try. Are they doing high dose ifosfamide? It’s not fun and makes you miserable but that’s only temporary so try to hang on!
This website has a page on complementary therapies. You can take a look:


When I find a study that suggests something found in nature inhibits synovial sarcoma, I usually post it there.
That being said, I haven’t found a cure for myself yet and what put me in remission was always surgery.

I hope your tumor shrinks and becomes surgically removable. Good luck!
Elodie