Newly diagnosed (liposarcoma) and starting treatment (doxorubicin) on Monday

Hi Everyone

I came to the Centre last week for the Living Well course. It was great. We are very fortunate.

The histology has now confirmed that I have a retro-peritoneal lipo-sarcoma which is not operable and I am due to start on doxorubicin on Monday.

Things are moving fast and I think thats best but I also want to do what I can to do to maximise my well being.

I've read the info about the drug, and am putting into practice the meditation etc so that I am as receptive as I can be. But if there are any specific tips, pls feel free to share. Eg I've heard the ice skull cap doesnt really work with doxorubicin - is it worth trying>

Also if anyone has a retro-peritoneal lipo-sarcoma and has looked into/personal experience of non surgical options including

1) Combination with olaratumab or going more quickly to stronger chemo eg trabectidin or eribulin)

2) high dose proton therapy (https://www.oncolink.org/conferences/coverage/ptcog/oncolink-at-ptcog-2012/reporting-from-ptcog-2012/high-dose-proton-therapy-for-soft-tissue-sarcoma-of-trunk-type-of-session-scientific-session)

3) Turmeric / curcumin

4) Aloe Arborescens

if you want to know what i find out on any of the above, let me know - I am happy to share.

Hugs to all

Raj

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  • In January 2016 Karyopharm Therapeutics initiated a new Phase 2/3 clinical trial with oral selinexor. SEAL (Selinexor in Advanced Liposarcoma) is a randomized, multicenter, double-blind, placebo-controlled study of patients diagnosed with advanced unresectable dedifferentiated liposarcoma. It may be worth investigating.

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