1. < Neuroendocrine Tumors (NETs)

NET so worried

Posted by catherinemary @catherinemary, Feb 21 4:12pm

So pleased to have found this discussion group for NET patients. Can’t post atm but looking forward to very soon. Cheers

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 26 9:22am
In reply to @catherinemary "Hello Teresa …. The drug is the very very very expensive one (I haven’t got the..." + (show)
@catherinemary

Hello Teresa …. The drug is the very very very expensive one (I haven’t got the name at hand); going to the public hospital to get it would cost nothing, but privately $10,000 a dose. I am thinking of switching my private oncologist to one who has a special interest in NETs. As you can probably tell, I am a bit all “over the place” and can scarcely believe this is all happening; but I feel well nevertheless. Many thanks, Cathy

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I really understand what you mean when you say, "I am a bit 'all over the place' and can scarcely believe this is all happening..." So many of us felt that way when we had this rare cancer diagnosis. I'm glad that you feel well, that helps a great deal.

As it helps to take this journey with others, will you continue to post and keep in touch?

REPLY
1 reply
catherinemary | @catherinemary | Feb 26 4:43pm
In reply to @hopeful33250 "I really understand what you mean when you say, "I am a bit 'all over the..." + (show)
@hopeful33250

I really understand what you mean when you say, "I am a bit 'all over the place' and can scarcely believe this is all happening..." So many of us felt that way when we had this rare cancer diagnosis. I'm glad that you feel well, that helps a great deal.

As it helps to take this journey with others, will you continue to post and keep in touch?

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Yes I will Teresa. It is a life- line for me just to be “with” others who are, and who have been, going through very similar circumstances. With thanks
Cathy

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catherinemary | @catherinemary | Feb 26 4:48pm
In reply to @elm60 "Hi! I am so sorry you are going through this. I just wondered if you were..." + (show)
@elm60

Hi!
I am so sorry you are going through this. I just wondered if you were on Facebook? If so, Neuroendocrine Cancer-Ronny Allen’s Group is a great group as they are in the UK. He also has a Neuroendocrine Cancer FB page as well. Anything and everything you need to know are on this site. He also has a blog and provides the latest information on treatments and what’s in the pipeline. I am hoping you are already a member and also Dr Liu’s Zebra’s A Neuroendocrine Cancer Community is US based, but he has regular monthly FB live events.
I hope you get sorted with getting to a NET Specialist to oversee your journey. All the Best to you!

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Thank you so much for your message EM. The suggested groups I will certainly follow-up!
Many thanks Cathy

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