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Past, Present, and Future Treatment Options for Desmoid Tumors

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Mary Smith, PhD, of SpringWorks Therapeutics explains the past, present, and future treatment options for Desmoid tumors.
Desmoid tumors are benign soft tissue tumors that can invade surrounding tissues, suchas joints, muscle and viscera. Historically, treatment was limited to surgery and/or watchful waiting, but new therapies are in development, such as SpringWorks nirogacestat.
Nirogacestat is a gamma secretase inhibitor currently being investigated in a Phase 3 clinical trial involving adults and a Phase 2 clinical study involving children with Desmoid tumors.
To stay abreast of the latest developments in Desmoid tumors and other rare conditions, sign up to our weekly newsletter at checkrare.com/sign-up/

Опубликовано:

6 сен 2024

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Комментарии : 21

@karaschug1680 3 месяца назад

I’m on that drug - I have been for 16 weeks now, and I just got back my MRI and there’s very little change in size. So at least it’s not growing. I am looking for a natural way because the drug does have side effects that are starting to impact me negatively.

@Slimgurl2290 6 месяцев назад

my sister has a Desmoid tumor it measure 21*18*23cm in the abdomen. we live on the island in the Caribbean these is no treatment for so sad

@karaschug1680 3 месяца назад

The drug was approved by FDA in late November 2023

@justinworkman9424 3 года назад

I had my first desmoid tumor removed while on deployment. Fast forward 16 years...its back with a vengeance. Just finished up chemo with hopes to shrink it. No such luck. It is true, the pain sucks! At this point it’s looking like I may be losing my arm because of the growth as it’s looking like no other treatments are working.

@KTF.4.EVER1961 3 года назад

Justin, I wish you all the best. 💜🙏

@catrionagordonmariano3616 3 года назад

Justin, please check my link above. Hopefully, you can find the help and support you need to avoid losing your arm!

@natalietran2598 11 месяцев назад

I am having the desmoid as well, it came back after 3 years of surgery. However I have been taking herbal and it show shrinking within 1 month. I have CT within one month showed the shrinkage. I will keep up with the herbal and will make a video to share with everyone. Thanks god!

@rinakainth4090 9 месяцев назад

@@natalietran2598hi can u help me pls?

@rinakainth4090 9 месяцев назад

@@natalietran2598hi ..Can you tell me pls what kind of herbal you have taken?

@AnnaBelise 3 года назад

My Dad had his Desmoid removed and 15 months later it’s back and bigger! I almost wish my dad never got the surgery.😢

@catrionagordonmariano3616 3 года назад

Mani - please have your Dad check the above links I posted. There is help and support out there!

@david92xj 2 года назад

My wife has a desmoid tumor in her back. She had cryoablation done, 6 months later the pain is coming back, MRIs show the tumor has grown since the cryoablation. We have an appointment in a few days to discuss further options. I'm worried she may need chemo.

@user-ct8sl5de3s Год назад

I have been diagnosed with fibromatosis in the neck. It was a large agressive fibromatosis tumor removed 3 months ago and is already grown back 3cm. I just had an MRI done a few days ago. No doctor here knows how to treat it. I have them growing also in multiple places in my body upper arms, upper legs, fore arm, back, hip and abdomen areas. The pain is the worst for me. Don't know what to do.

@natalietran2598 11 месяцев назад

I have been taking herbal and my desmoid show shrinkage on CT scan after 1 month taking the herbal. Please let me know what i can do to help. I am keeping up with whatever I am doing right now and come back for another CT scan in 6 months.

@user-ct8sl5de3s 11 месяцев назад

@natalietran2598 My oncologist has me taking a chemotherapy pill called "sorafenib" to see if that helps shrink it. I just started it 3 weeks ago and the side effects are bad but I don't want to have to get regular chemotherapy through IV because these pills are too bothersome so I'm trying to tough it out the best I can. What kind of herbal do you take that's been helping you?

@rinakainth4090 7 месяцев назад

@@natalietran2598 Hi can u share ur herbal diet pls? What kind of herbal did you take?

@sherelagaliga9762 3 года назад

I have desmoid tumor upper my cesarian before my tumor is small now is big..what is the best medecine i dont have money for surgery..

@catrionagordonmariano3616 3 года назад

Sherela - please check my links above. Hopefully, you can find help and support there.

@benjaminjohnson5469 2 года назад

I have 2 interabdomanal desmoid tumors. Going on 6 years of no growth actually have gotten smaller in last few months. Dr. Has me taking 20mg of tamoxifen.