Diagnosed with sarcoma? Let's share

My mom is diagnosed with sarcoma and boy has it been a ride. It happened out no where. She was originally misdiagnosed twice. We immediately went to MD Anderson. They scheduled her for surgery but the tumor was too big. The surgeon open her up and closed her cause he wasn’t comfortable giving her surgery. After that she was placed on chemo. MD Anderson is NOT the hospital everyone thinks it is. All that it matters where you starts has been a complete nightmare! My mother always was diagnosed with sarcoma. MD Anderson supposed to have one of the best sarcoma teams out there. My thoughts is why wasn’t my mom originally scheduled with a sarcoma doctor. If you don’t research, and is new to this. They will put you with any doctor. She finally got the surgery. The dumb doctor kept her off Chemo for 3 months! She has sarcoma. You must act quickly or it will grow. We go to the doctor. They placed her with a new doctor. Finally, with a sarcoma doctor. She comes in the room. Break the worst news saying the cancer has popped back up in 5 different locations and the last doctor shouldn’t have kept her off Chemo that long with this form of aggressive cancer. She started Chemo. 1 of the tumors is not responding. The doctor is placing her on a new Chemo, but I feel the doctor is ready to give up on my mom’s case and the cancer is only in her pelvis. She doesn’t want do another surgery because she said the tumors will grow. They don’t want do radiation because location of the tumor. We are currently at the point of switching doctors and taking control of her case and her life! We can’t afford a conservative doctor at this point and hiding her don’t care attitude with a big smile.

I’m venting my frustration cause my mom is totally unmotivated. She was a nurse so she knows what to do. I have to research everything for her, and I’m almost becoming very annoyed. I’m so disappointed with MD Anderson on so many levels. Anyone, going through this. Learn your cancer. Be your own advocate. Don’t expect anyone to do it for you. Your doctors will give on you, and any form of negativity. Get rid of them. You will lose hope through their negativity and sometimes hope is all you have to hold on to. This is your life!. It tears down your caregiver and they are trying to support you in this long journey, but if you’re not motivated, how can they keep the motivation. I’m on so many forums trying to gained the support and knowledge for her and she’s not on one. I beg her to join so she can educate herself. I wish she was passionate about this cancer as when she was passionate about her career.

I don’t want to lose my mom it’s been just her and I for so many years. I can’t imagine my life without her. I know the time will come one day but she’s only 72. She was a young 72 before this happened. The doctors talk about how healthy she is in spite of the cancer. I know I sound selfish. I’m just frustrated.

I was treated for a metastatic singular fibrous tumor in both lungs and completed my dendritic cell treatment in early January

Hello to All....
Anyone having experience with Immunocine please send me an email at mrflyer@aol.com
Thanks
Chris

Colleen, Ive recently started PT at home after 8-hour surgery for removal of sarcoma that was accesable, leaving some sarcoma behind. The result was removal of a solid form or the mass plus a 4" section of femoral nerve and muscle (psoas?). The pre surgery CT scan showed no metastases. I have only one major complication: left hip pain when maneuvering the leg in some positions. The surgeon said that it takes a long time to heal. I have no superficial feeling below my hip to my lower leg. I still have strength fpr PT exercises.

I’m in the UK under Velindre Cancer Hospital in Cardiff

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