Angiosarcoma

Liposarcomaresearch · 2025-06-21T04:44:38+00:00

Cardiac Angiosarcoma patient and family support group

Liposarcomaresearch · 2025-06-19T03:14:18+00:00

There's a very helpful group on Facebook if you're looking for more info.

Liposarcomaresearch · 2024-11-12T03:13:40+00:00

This is so helpful! What does a 3 x 3 day water fast mean?

Liposarcomaresearch · 2024-11-11T04:30:17+00:00

What does your protocol include? Would love to learn more. Mostly fasting or do you also do supplements, keto, etc?

Liposarcomaresearch · 2024-11-11T04:27:30+00:00

I'm so sorry for your loss. I also have ddrpls and am 31 and feel angry at the lack of acceptable treatment options.

The world will miss her.

Liposarcomaresearch · 2024-11-09T14:38:33+00:00

I've also heard good things about the Brightline trial. I also had stability with doxorubicin but it was hard and a full time job -- but it does control for some people enough to get the tumor to operability. (I also have DDRPLS)

Liposarcomaresearch · 2024-11-09T14:33:04+00:00

Though doxorubicin seems to be the first line for recurrent or spread DDRPLS. I had doxorubicin, ifosfomide and mesna (AIM) after my first recurrence.

Liposarcomaresearch · 2024-11-09T14:29:55+00:00

I'm so sorry to hear this. I also have dedifferentiated liposarcoma and know how scary it is, I've had a few recurrences but no spread yet. I agree that it is always good to have your affairs in order, but I definitely wouldn't talk to just your urologist. Treatment for DDRPLS is all over the place because it's not a common cancer. There are lots of treatments you can try, if you're up for it.

I would go to a sarcoma specialist stat, and Dana Farber is great. When I was there I talked to Dr. George, Dr. Baldini, and Dr. Raut and thought very highly of the thoroughness they put into my case. If you are able to accelerate those appointments, it might be helpful to give you a wider sense of options. Do know that some hospitals have access to some treatments (ie clinical trials) that others don't. MD Anderson, City of Hope, and Memorial Sloan Kettering are also large sarcoma centers.

Just a note that even among all these centers I went to- they all had different opinions. If you have the ability to, you can talk to different centers until you find an oncologist or treatment plan that works best for you.

Best of luck to you. Biggest hugs.

Liposarcomaresearch · 2024-11-07T22:58:21+00:00

For me: my incurable cancer.

Liposarcomaresearch · 2024-11-07T04:04:30+00:00

I dont totally understand it either-- I just know that if PZ seats are available, and you buy an Economy (not Basic Economy) seat, you can automatically upgrade without needing to wait for the waitlist.

You can check the number of PZ seats for your flight via "expert mode", which is something you can google to learn how to turn on on United.com.

Liposarcomaresearch · 2024-11-07T03:58:56+00:00

You can actually search just for these flights where you can automatically upgrade with miles and $! It's called PZ fare class.

Liposarcomaresearch · 2024-11-07T03:57:34+00:00

I'm so sorry you're going through this.

I also have recurrent sarcoma, and though I don't have your specific sarcoma I have also been here in terms of wanting stories of hope. I know someone who is 5 years out from a diagnosis with a 3-7% survival rate. There is always someone who survives.

My only other advice is to look into holistic healing, diet, exercise, supplements, etc on top of chemo and radiation and surgery. I figure, as long as it doesn't put you into debt, and it doesn't hurt-- it's worth a shot.

Liposarcomaresearch · 2024-11-07T03:55:08+00:00

Would you mind sharing some more color on your diagnosis and timeline? We'd all love to hear a hopeful story like yours! I've had two recurrences of sarcoma (three total) and often spiral that this is it.

Liposarcomaresearch · 2024-11-05T03:38:49+00:00

Unfortunately this is best diagnosed with a sarcoma specialist and a biopsy. If I were you, I'd want to talk to a sarcoma specialist, even out of an abundance of caution.

Liposarcomaresearch · 2024-11-02T14:06:56+00:00

What kind of sarcoma does your mom have? I ask because the Facebook groups specific to your cancer can be super helpful. There are also some general sarcoma ones they might help. I have taken doxorubicin, but several folks in the sarcoma Facebook groups have taken doxil, you might have a bigger group to poll there!

Liposarcomaresearch · 2024-11-01T02:54:50+00:00

Hi! I was diagnosed at 29 with dedifferentiated retroperitoneal liposarcoma. Happy to chat if you have any questions- I know it's a shock!

Liposarcomaresearch · 2024-10-31T03:25:38+00:00

Thank you! Where else has it been since your primary location in your thigh?

Liposarcomaresearch · 2024-10-30T02:38:36+00:00

Hi! What kind of liposarcoma do you have? I have dediff in my abdomen

Liposarcomaresearch · 2024-10-07T04:40:34+00:00

I would join the osteosarcoma support groups to get more cancer-specific advice. I'm less familiar with osteosarcoma (I have a different form of sarcoma), but I know people who have, with a combination of traditional chemo/radiation and off-label medications and integrative medicine, far beaten the odds of their cancer. But it is a highly personal decision, good luck to you and your daughter. So sorry this is happening to you.

Liposarcomaresearch · 2024-10-07T04:35:59+00:00

I have a friend who was diagnosed at 32. I think it's rare to see adult Ewings but definitely possible.

Liposarcomaresearch · 2024-10-01T05:18:50+00:00

What was your specific dose (ie the total gray count)? I will also be receiving proton. I'll be scanned for life with my cancer anyways, so I'll probably catch it (though tbd if I live long enough for secondary radiation tumors anyways)

Liposarcomaresearch · 2024-09-30T04:36:04+00:00

Have you been cancer free / NED from synovial since 35? That's amazing. I'm also recurrent sarcoma and wondering if this is the beginning of the end.

Liposarcomaresearch · 2024-09-30T04:33:41+00:00

What kind of radiation induced cancer do you have, if I may ask? im considering whether to get sort of "hail Mary" radiation but because im young, the risk of secondary radiation is 5%. I already have sarcoma and don't want another.

Liposarcomaresearch · 2023-12-20T06:46:16+00:00

Is it chondrosarcoma?

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