Sarcoma (Soft Tissue Cancer) Treatment | Nora’s Story 

How is your mom now

@@kumarAmbuj151 She is doing much better. She ended up having a surgery to remove the tumor about 4 months ago, everything went well. She walks, eats well and enjoy her life. She stopped chemotherapy and will be visiting a doctor within the next few weeks to see how things are and whether she needs any treatment. Thank you for asking

@@bestsuan I want talk with you

@@bestsuan I want share sum report

My mom has it too, after hear breast cancer tnbc .. i hope your mom doing really well..!! what kind of therapy is your mother getting?

My mom too. I’m so scared and hurt.. I don’t want my mom to go..

How is now your mom

​@@janayab.7249how are you now

Funny, I was proactive but my pcp treated symptoms and did not look for cause.... Wonder what my situation would have been had the pcp investigated earlier....

Nora Murray thats a good point, many physicians wont bother to look further, dig deeper or listen carefully to their patients. In addition to that, they always think of the common causes; lets say you have bone pain and fever "oh that must be COLD !" and that is wrong ! physicians should always rule out the uncommon causes and all of the possible causes before concluding its something minor. Thank you nora for sharing your story and thank you for what ur doing.

How are now

Raza Domhani hey my sister has the same problem, we’re so worried as well.

My younger brother too and he also has metastatic pulmonary nodules in the lungs 😞

My wife suffering from same type of sarcoma carcinoma please suggest i am from india my number 7874507765

Have you seen a doctor in your local area?

Hello are you ok still

Is she ok now?😭

Did your mum have chemotherapy or radiotherapy after her first surgery

what if on right elbow have a tumor is need to cut the hand or need to operation and get the tumor on right elbow?😭

how now?

Hi, thank you for reaching out to us. We’re very sorry to hear about what your family member is going through. Unfortunately, because each person’s medical situation is different, we are unable to provide treatment recommendations or second opinions via this form of communication. If you would like to request an appointment at one of our hospitals, please call 888-872-1408. Our specially trained medical concierges can arrange consultations or treatment plans with the most appropriate specialists. Johns Hopkins USA can also provide language interpretation, financial counseling, assistance with travel arrangements and anything else to help make Johns Hopkins feel as close to home as possible.

Zaky Trunks, How have you been going thru this rare cancer? It certainly is helpful to talk to someone with the same issue. My lovely daughter in law at age of 30, had her left kidney removed 3/21 after persistent severe pain on her left abdomen for 2 months, the biopsy indicated she had Anaplastic sarcoma of the kidney, was started on chemo drug Avapritinib on 6/21, a new drug, approved by FDA in 2019, it showed good result with the size of tumor shrinking 40-50 % after 2 months on the chemo, then she had reaction with bleeding, the dosage of the medication was reduced, and the tumor size increased and spread to her liver, she was back on full dose, then had bleeding again recently, she just had PET scan today, not sure what the new option of the treatment would be. she is under the care at Sloan in N.Y, she also had a consultation 2 weeks ago at Anderson ,with no new remedy other then to continue the current treatment at Sloan. I try to think how she and my son have been going thru in this fight of rare sarcoma. Please keep in touch. I hope you have good friends and family to support you in your fight against sarcoma. Please feel free to contact me if you need someone to talk to.

Avapritinib is very expensive, about $35,000. a month, her Dr was able to obtain a compassionate use of the drug for her. Not sure if the insurance covers it. Our option maybe to try other chemo and radiation, that will be decided at Dr. appointment next week.

Hi, I was diagnosed with low grade fibromyxoid sarcoma just today and I'm terrified 'cause I've seen on the internet that is very rare. How are you doing now?

​@@samj9936how are you now dear

I have the same sarcoma at the base of my neck & shoulder. It's 8cm but no treatment yet. Have you done any treatment?

How is your sister

@@kumarAmbuj151 , she passed away today

My wife has sarcoma Cancer in left thigh. Once she was operated again a tomor occur in retroperitonium pls suggest best treatment

Good wrk I like u

We miss him