topic Re: Recurring Malignant Peripheral Nerve Sheath Tumors in I've just been diagnosed

Recurring Malignant Peripheral Nerve Sheath Tumors

erron — Tue, 11 Jun 2019 13:11:31 GMT

Hi Experts,

This is about my cousin who has developed Recurring MPNST. This is genetical, father has similar problems but non invasive. He was treated 3 times with radiation and chemo in the last 1.5 years with 10cm in size.

This time it seems a bit severe and everybody in the family is very concerned. he is only 27 years old.

We were told that this is non invasive type of tumour and it will reach its peak and stop recurring in future, not sure if this correct or not.

It hasnt done invasion in blood, but there are some small tumours detected in lungs.

Just wanted to get an expert opinion what are his survival chances, what else he needs to be careful of. happy to send assessment report.

Thanks muchly

Regards

Ron

Re: Recurring Malignant Peripheral Nerve Sheath Tumors

Katekat — Mon, 17 Jun 2019 05:09:33 GMT

Hi @erron,

Sorry to hear of your cousin's diagnosis.

There's some information here, over on the knowledgebase maintained by Rare Cancers Australia about MPNST with some information about prognosis that you may find useful. May need to scroll down once or twice to get to the information I've mentioned.

Has anyone here had any experience with MPNST or soft tissue sarcoma's that could perhaps address @erron's questions?

Cheers,

Kate

Online Community Manager

Re: Recurring Malignant Peripheral Nerve Sheath Tumors

looker_labs — Thu, 11 Jul 2019 11:04:15 GMT

Oh it could be cured.

The right kind of treatment helps.

Re: Recurring Malignant Peripheral Nerve Sheath Tumors

Karina — Wed, 26 Aug 2020 12:15:48 GMT

Hello, I have a MPNST too. Instead if 2nd op I will get a new treatment. Its called carbón ion therapy, which sounds promising.

Karina

Re: Recurring Malignant Peripheral Nerve Sheath Tumors

erron — Wed, 26 Aug 2020 12:28:04 GMT

Thanks for sharing 🙂

Re: Recurring Malignant Peripheral Nerve Sheath Tumors

erron — Wed, 26 Aug 2020 12:28:39 GMT

Great to know,

Thanks for sharing Karina.

Regards