My mom was diagnosed three days ago with a -soft tissue sarcoma- 35cm tumor on her quadriceps, she has biopsy on Wednesday and a surgery the week after to extract her quadriceps muscle. This is super hard to believe, please pray for my mom.
@@Ninza2fact 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
wow, i hope you have a good life nora and a long one as well. I really wish people would start paying attention to themselves and always refer back to their doctors if they feel something is wrong, early diagnos of a tumor or any disease, improves the prognosis dramatically.
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.
I have a rare soft tissue sarcoma cancer, I am really hoping I can find someone who also has it. It’s called Fibromyxoid sarcoma. please if you have this cancer it would be nice to have someone to talk to. And if you have this diagnosis recently, don’t panic about not finding it on any cancer page! I found that too!
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?
My mother also suffer high grade sarcoma ..her left thigh tumor first operation dine but 2 n half month again another tumor seen same place below doctor say now again we shud operation and this time its deeply operation and im afraid my mom so worried they don wana operation what to do
I please need your help for I have cancer called sarcoma. my name is Melvin Glor live in Liberia Nimba county Bahn city. I have not found any solution to this problem
Hii sir I need your suggestions that I want to tell abt my younger brother that he has also this type of cancer sarcoma but the doctors says to give chemotherapy but till now it doesn't effect on that tissue .can u plz recommend me abt this type of sarcoma to get good suggestions or help from u .we all our family r worried abt this diseases .I wll request u to gve some suggestions or good ideas abt this plzz . Thanking you . Regard Raza from India
my wife was diagnosed with renal sarcoma. cant undergo chemo or surgery due to luck of finances. what alternative treatment is possible for her. were from the Philippines by the way.
Please someone reply me i am 13 year old see i have sometimes soft in my calf when i press my calf i see sometime big soft is this muscle and most anxiety think i can palpitations my calf i can i can control palpitations in calf i say a doctor in TH-cam he say ok but i not tell him one soft something in there i can do palpitations in my two calf when i do palpitations i got little pain no bone pain first i thought this happens to everyone and now i have litlle pain in calf but i think today and yesterday i press calf many time i think that is pain is this sarcoma please someone reply
My family member has retroperitoneal leiomyosarcoma she has done two surgery, lost one kidney, and done chemotherapy, however, it was ineffective as it made no difference now it shows in the lungs. Dr suggest again an surgery What to do now? Kindly suggest some help DR Thank you
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.
I am 42 yearsold suffering from Epitheloid sarcoma in neck.I am from Pakistan and have gone through surgery,radiation and chemotherapy.Unfortunately tumor is still there causing suppression. Can anyone help me.? I cannot afford Tazematostate and its unavailable in Pakistan too.
Hi, thank you for reaching out to us. We’re very sorry to hear about what you’re 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 go here: www.hopkinsmedicine.org/international/patients/appointments/index.html.
Darling ma'am I need your suggestions that I want to tell my younger sister that she has also this type of cancer sarcoma but doctors nothing doing anything. Only give pain medication. Thank you Regard Mazhar Birmingham UK
My mom was diagnosed three days ago with a -soft tissue sarcoma- 35cm tumor on her quadriceps, she has biopsy on Wednesday and a surgery the week after to extract her quadriceps muscle. This is super hard to believe, please pray for my mom.
How is your mom now
@@Ninza2fact
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
Hello how is your mother doing ❤?
Thank you for sharing your story, it gives me hope with my mums situation.
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
Gives me hope to see your story!
wow, i hope you have a good life nora and a long one as well. I really wish people would start paying attention to themselves and always refer back to their doctors if they feel something is wrong, early diagnos of a tumor or any disease, improves the prognosis dramatically.
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.
I have a rare soft tissue sarcoma cancer, I am really hoping I can find someone who also has it. It’s called Fibromyxoid sarcoma. please if you have this cancer it would be nice to have someone to talk to. And if you have this diagnosis recently, don’t panic about not finding it on any cancer page! I found that too!
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?
My mother also suffer high grade sarcoma ..her left thigh tumor first operation dine but 2 n half month again another tumor seen same place below doctor say now again we shud operation and this time its deeply operation and im afraid my mom so worried they don wana operation what to do
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?
I please need your help for I have cancer called sarcoma.
my name is Melvin Glor live in Liberia Nimba county Bahn city. I have not found any solution to this problem
Have you seen a doctor in your local area?
Hello are you ok still
Have you tried fenbendazole
Hii sir I need your suggestions that
I want to tell abt my younger brother that he has also this type of cancer sarcoma but the doctors says to give chemotherapy but till now it doesn't effect on that tissue .can u plz recommend me abt this type of sarcoma to get good suggestions or help from u .we all our family r worried abt this diseases .I wll request u to gve some suggestions or good ideas abt this plzz .
Thanking you .
Regard
Raza from India
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
my wife was diagnosed with renal sarcoma. cant undergo chemo or surgery due to luck of finances. what alternative treatment is possible for her. were from the Philippines by the way.
How are now
Please someone reply me i am 13 year old see i have sometimes soft in my calf when i press my calf i see sometime big soft is this muscle and most anxiety think i can palpitations my calf i can i can control palpitations in calf i say a doctor in TH-cam he say ok but i not tell him one soft something in there i can do palpitations in my two calf when i do palpitations i got little pain no bone pain first i thought this happens to everyone and now i have litlle pain in calf but i think today and yesterday i press calf many time i think that is pain is this sarcoma please someone reply
My family member has retroperitoneal leiomyosarcoma
she has done two surgery, lost one kidney, and done chemotherapy, however, it was ineffective as it made no difference
now it shows in the lungs.
Dr suggest again an surgery
What to do now?
Kindly suggest some help DR
Thank you
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.
I am 42 yearsold suffering from Epitheloid sarcoma in neck.I am from Pakistan and have gone through surgery,radiation and chemotherapy.Unfortunately tumor is still there causing suppression. Can anyone help me.? I cannot afford Tazematostate and its unavailable in Pakistan too.
Hi, thank you for reaching out to us. We’re very sorry to hear about what you’re 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 go here: www.hopkinsmedicine.org/international/patients/appointments/index.html.
Darling ma'am I need your suggestions that I want to tell my younger sister that she has also this type of cancer sarcoma but doctors nothing doing anything. Only give pain medication.
Thank you
Regard
Mazhar
Birmingham UK
How is your sister
@@Ninza2fact , she passed away today
Hamare bhai ko sarcoma h sir kya karna chahiye
Jladi se sir advise dijiye sir
Dr Jake Krues, Soft tissue cancer wellness El Salvador
Try Frankincense oil topically .
Many testimonies on TH-cam .
my name is Nora 😊😊
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
pudina powder and water
Technoblade
We miss him