Diagnosed with sarcoma? Let's share

Thank you you’re the first person that I’ve heard that has something similar and I loved the positive note. Thank you for your encouraging words ❤️‍🩹🙏

Assalamualaikum to all who reading this comment I want to share my store
Iam Amreen from India hyderabad
I was diagnose with phyllode tumor
My age is 28
Since last year I was suffering from phyllode tumor of breast
In India hyderabad one of the hospital which name was mnj cancer intuition in this hospital my surgery was done the doctors removed my complete breast.

I am undergoing dendritic cell therapy at Immunocine in Cancun for my metastasized solitary fibrous tumor. I was told incurable but this place is amazing. Had two vaccinations to date and feel great

Thanks, The only option that I was given was chemotherapy. Chemo, I was told would possibly extend my life but that my cancer would eventually overwhelm it and I would need another chemical. Dendritic cell therapy made sense and there have been amazing results

@aymen, I’m sorry to hear that you were diagnosed so young. You may also be interested in this discussion:
- Anyone diagnosed with Phyllodes tumor?
https://connect.mayoclinic.org/discussion/phyllodes/

Does Dr Randall Roenigk still work at Mayo? Or he turns to a consultant?

@ss3336, Dr, Roenigk maintains a surgical practice at Mayo Clinic in Rochester, MN.

See his bio and information here:
Randall K. Roenigk, M.D., Mohs Micrographic Surgeon and Dermatologic Oncologist https://www.mayoclinic.org/biographies/roenigk-randall-k-m-d/bio-20053971

I was diagnosed with adrenal leiomyosarcoma in December 2023. Frequent scans have revealed multiple lung nodules. I just had surgical lung biopsies here yesterday and initial reports suggest metastasis to lungs. I know this is extremely rare and am looking for encouragement.

What's the fastest way to get treated by him?

I have uLMS. It was confirmed after total hysterectomy, appendectomy, and partial removal of my momentum in December, 2023. I am treated at Karmanos in Flint. I had radiation to my abdomen, which took care of a 3ml area of cancer. The cancer had metastasized to my lungs. The first chemo I was on was too strong for me; that and lung biopsy threw me over into sepsis. I was hospitalized extremely ill; I think they were surprised I survived. I remember being offered hospice or palliative care in the hospital and getting angry. I said no, I intend to fight. I had to insist on genetic testing. The first nurse forgot to send it in. I nagged about it and it turned out to be a Godsend. It showed i did have mutations that opened up a number of different treatment possibilities for me. I had a very determined PT out to the house. He got me from non-mobile to in my wheelchair to walking 50-60 feet in the house. My doctor was astonished how much I had improved in general condition. I was being treated for CHF by my cardiologist (a lot of treatments are hard on the heart), and a lot of diuretics to get rid of the tremendous amount of retained fluid. I lost 70 pounds of weight and fluid. I have other problems- My spine is fused s1-t12, I have osteoarthritis and fibromyalgia. Right now I am getting over what is probably a mild case of covid. My treatment right now is an ALK inhibitor called Alecensa. It is oral capsules twice daily. My kidney function is compromised and it went way down when I first went on it. This is my second go. I feel fine; bloodwork on Friday will tell the tale. I receive a lot of support from two online Leiomyosarcoma support groups on Facebook. One is focused a lot on education and research. There are some long term survivors on there who will definitely give you hope. I hope this helps.