Diagnosed with sarcoma? Let's share

Barnes Jewish Hospital in St. Louis, Missouri has medical staff dedicated to the diagnosis and treatment of sarcoma cancers.

Hi
Many thanks for your reply, I will add Votrient to the list for discussion with the consultant, best wishes to your wife
Kind Regards
Gemma

Hello....my Wife has rLMS. She has been on Votrient...pazopanib...
since February. She started on a low dose...200mg...to avoid liver impact. She increased to 400mg. Up to now, Votrient has held her lung mets at bay. A small undefined growth on her liver has also stayed small. She's increasing her dose now to 600mg, and will have scans in 2 months to check progress. Up to now, her main side effect of the drug is significantly altered taste. We hope that improves. We've been told Votrient isn't a "long term" treatment. We hope to prove that wrong! Best wishes to you and your Father in your treatment efforts!

Do you know anything about, or where to get care for, Intimal Sarcoma? See attached screenshot of Nat Myers IG. He is searching for second/third/fourth opinions. If you can help, message him in his Instagram. Thanks! -Steven

Hi
My Dad had UPS with lung mets - he’s been on Trabectadin for over 2 years which has been great to be honest, hardly any side effects and it has held back any growth/spread the lung nodules were down to 2/3mm. Recent CT has shown growth of 2mm in just a few, no new growth of nodules and growth nowhere else in the body. Consultant has said the amount of growth would not be classed as progression at this stage and wants to wait for the next CT scan (after 2 more treatments). As Dad had Trabectadin as first line treatment (I wanted him to maintain his QOL if there was no chemo that would cure him), so just wondered has anybody tried anything else for sarcoma lung mets - Erubulin, Pembrolizumab or Pazopanib? I want to be forearmed before we make the decision as I don’t really want him on doxi/ifosamide/gem due to its toxicity without any real positive outcome - many thanks

Good morning, everyone, it has been one month since my surgery for the GIST that was discovered on a routine endoscopy. I have posted before but have been so busy with recovery that I have not given an update in a while. The surgery was successful, Dr. Abbate used the Da Vinci robot to assist him with the surgery, and a great team of other nurses and doctors. The tumor was removed with zero margins, and the growth rate was negligible. Dr Abbate has me on surveillance for five years, with a CT every six months. He only had to do a partial gastrectomy, so my diet will not have to change. I did do two weeks of liquid diet, and then two weeks of soft, and now I am back to whatever I can tolerate.

I feel so blessed on all aspects of this experience, so many things were in my favor, I give all glory to God for that. I want to say I am praying for everyone who has to go through any battle with cancer, that they will have comfort, strength, and resilience all through their fight. I know everyone doesn't have miraculous results, but be of good cheer, God is with you in everything you go through, He loves us all.

I am so sorry for your situation. You are at with an outstanding organization. Sarcoma is frustrating since it responds to very few chemos and radiations and is so aggressive upon its reoccurrences. and all we can do is wait to see what is successful. I am waiting as well to see if this miserable chemo is effective at extending my life. Cycle 4 day 6.

Yes, I am at Sloan, but the only thing they can do with my sarcomas is cut. I asked them to try to save the leg with a flap and when it reoccurred did cryoablasion twice.
They do have the pathology department, but wish the oncologist would give me some hope it is on the Web databases and discussed at conferences in case someone else has a treatment plan.
I am in limbo waiting for the next occurrence, and surgery.

Hola, mi hermanito tiene 19 años, tiene sarcoma epitelioide, me dicen que no hay tratamiento y si hay es solo en EEUU, y es súper caro, alguien con ese diagnóstico?

Hello, I was diagnosed with a malignant solitary fibrous tumor in my liver which was surgically removed in 2021. It later metastasized to my lungs. I was treated in Cancun with dendritic cell therapy in January of 2025 and hand no new tumors since. They are getting amazing results with sarcomas. Visit Immunocine.com for more information. MCWjr189