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MPNST Sarcoma

29 Jan 2018 17:35

Hello,

My husband was diagnosed with MPNST, a rare type of sarcoma and he was already stage 4 when we got the diagnosis 2 months ago. 

2 weeks ago it spread to his neck which fractured and he has also fractured his humourous. He is now terminal and has been given a prognosis of 3 months.

Our sarcoma specialists will not operate on his fractures as feel there is too much risk and he has not responded to the first chemo they tried.

He is 36 and I am 32, we got married 8 months ago.  They want to leave him in a collar and a brace and that is no quality of life. Does anyone know if anything that we can try to extend his prognosis as we can’t help but feel no one wants to help. I appreciate it is rare but surely someone knows something?!

I am also struggling with thinking about life without him. Any advice would be appreciated. 

Many thanks,

Lucy

Re: MPNST Sarcoma

31 Jan 2018 22:00 in response to Lucy.T

Hello Lucy. 

I'm so sorry to read about your husband's diagnosis. It sounds as if it's a very difficult time for you all. 

There is an organisation called Sarcoma UK which you can find at this link, they have a bit of information about MPNST and details about support groups and people with the same or similar diagnosis.

You might find that there are other users on the forum who can offer support and personal experiences.

We do also have a team of nurses here at Cancer Research UK that you can call to speak to. They are available Monday to Friday 9am to 5pm on 0808 800 4040. 

Sending you both our best wishes. 
Jenn
Cancer Chat moderator

Re: MPNST Sarcoma

7 Feb 2018 21:35 in response to Moderator Jenn
Many thanks Jenn, appreciate the reply.