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I have had an excision
( tumor returned 21 days later)
I was on nirogacestat for a year at max dose
(zero affect on tumor)
2 rounds of cryo (3 weeks pain relief each time)
liposomal doxirubicin 5 of 6 infusions
( again no affect on tumor)
6 days of nexavar (severe allergic reaction)
the oncologist is now at his end and does not know what else to do for me
I am waiting on a clinical trial and and S.A.R.C. specialist
I all ready have palliative care doctor involved
(Lyrica and edibles)

I had… read more

August 12
 · 
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A MyDesmoidTumorTeam Member

Look into nutrition. Mostly eat fresh when available, frozen when not and canned if you must. Stay away from junk and sugary food and drinks. Don't use margarine or fake fats. Use butter, olive oil and avocado oil. Look into tumeric and black pepper. I mix honey, tumeric, ginger, cinnamon, and clove into a jar and take a teaspoon every day. Good luck

October 13
A MyDesmoidTumorTeam Member

Moi j'ai eu un traitement de navelbine en comprimer de chimiothérapie pendant 1an 3x par semaine...la tumeur est passer de 10 cm sur 7.5 sur 2.5 à 2cm sur 9mm 5mm le reste 4cm sur 5 cm résidu cicatriciel .. douleur diminuer...et tumeur régresser ça serai une bonne piste la chimiothérapie NAVELBINE

October 13
A MyDesmoidTumorTeam Member

can i ask what it is? I know my palliative care mentioned 1 in particular and I said no
(Starts with an M.)

August 16
A MyDesmoidTumorTeam Member

I take potent narcotics and have since 2000. Take them if you need to. I recommend to just take enough so you can function. If you take enough for zero pain I guarantee you will become an addict. The doctors to their amazement still agree because I refuse to take more than I do I am still not addicted. It does require increased dosages from what I started at but still not an addict. Once in a while I get a surprise. A day when I can say I didn't need to take anything today. Love those days.

August 16
A MyDesmoidTumorTeam Member

will a physical therapist or massage therapist provide accupuncture directly to the tumor site?
Last time I tried to get the doctor to 0k accupuncture he would not as it "could cause the tumor to become angry and cause growth"
I've also had PT who would do accupuncture in general area but not directly to or over the tumor

August 13

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