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When the disease comes back


#1

salam friends and i wish u the best

I have a relative with synovial sarcoma in the axilla region and chest wall in stage 4 , she was treated with radiation and chemo 6 cycles in addetion to 4 operations , however after the last operation which was one month ago the tumors came back in three locations inclodig the last operation, her doctors refuse to give more chemo where the last cycle was 5 months ago ,and her white blood account is still very low (2000), the only left option is surgery ,but we know it seems to stimulate the disease more and more , i need to here from any one who was there or have any experience or information about our case.and thank u again


#2

Where is your relative treated? Is your relative treated at a sarcoma center? I would recommend a second opinion from a sarcoma specialist. The production of white blood cells is normally stimulated by a shot of neulasta or neupogen. Was your relative given the shot?


#3

I agree with Elodie I would seek a second opinion. Not only did I get second opinion for my daughter but I sent her specimen to six pathologist. I also researched a great deal on the disease and the options. My heart goes out to your friend and I will keep her in my thoughts and prayers.


#4

salam friends and thanks for your kinds, iam sudanese and my relative is a sister in low,she is 37years female, she was treated in cancer center in sudan and dubai, and ive no idea if her doctor is a sarcoma specialicst , i think he is oncologist , for her white blood she took neupogen four times since her last chemo cycle, evry time the white blood cells respond very well and after less than two weeks it decreased again ,her doctor considered this as a side effect for her chemo ,do you have any information about the effect of operations on the disease specially when the doctor cant reach a clear margins, thanks again .


#5

It is quite bad when the surgeon cannot get clear margins. The surgery may provoke a growth spurt of the leftover cancer… When there is no clear margins possible, radiation is often used, sometimes in the form of brachytherapy to try to destroy the leftover. That’s not always possible though and if chemo is not an option, the patient may be advised clinical trials when eligible or may be told nothing else can be done and sent home.
I don’t know where are the sarcoma specialists in your region. I checked the pubmed website to see if any publication about sarcoma comes from Sudan. I found one article from the University of Khartoum but that probably doesn’t make them specialists. More publications are coming from Saudi Arabia or India, but I don’t know if that helps… Good luck to your sister in law!


#6

thank you very much Elodie and Elizabeth , now we are discussing again all available options with her drs in dubai and sudan, and i hope good luck for you and all patients.