Hello all - newbie on the site ... metastatic neuroendicrine carcinoma host!

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Hello all - newbie on the site ... metastatic neuroendicrine carcinoma host!

Hello there. I have recently been diagnosed with the above and am about to start some heavy duty chemo treatment. I would love to hear from anyone who might have any comments or insight into what I am about to journey through ...
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Occasional Contributor

Re: Hello all - newbie on the site ... metastatic ...

Welcome. We have a support group on here for neuroendocrine cancers. If you go to groups up in the top blue menu click on that and then click on the group and request to join. I was diagnosed in Oct last year. Had surgery then started chemo on 13 Dec so have just had my 2nd lot of chemo last week.Just take each day at a time and write a diary on what symptoms etc you get after each chemo then you can let your oncologist know each time when you have the next chemo as they may need to alter the dose. Also keep track of what meds you take for anti nausea and constipation as dexamethasone meds used for nausea make you consipated and you can see next time you have chemo what you did take and when.Good luck on your journey. Cheers Robyn
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Re: Hello all - newbie on the site ... metastatic ...

Thanks for the contact Robyn. I have been told surgery or radiation is not an option in my case due to the metatasis. Nothing to cut out or aim at! I am a fighter though and this bugger has not picked an easy mark with me, no matter how hard it slams me.
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Re: Hello all - newbie on the site ... metastatic ...

Hi sorry I don't have any helpful advice about chemo as I was lucky and didn't need it but I hope it goes well for you and doesn't make you feel too awful.
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Re: Hello all - newbie on the site ... metastatic ...

Hi Robyn

i was diagnosed with neuroendocrine cancer 4 years ago. Had surgery and 12 chemo treatments followed by 18 months of cancer free time. Just been told secondaries are active again and need 12 more chemo treatments. I know I got through the first time so I can do it again. I just take it a day at a time. I am also new to the site. I haven’t found many people with this type of cancer. Will definitely join support group online would be good to hear the stories of others that have this type of cancer. I can certainly use some support.  Thanks for sharing. 

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Re: Hello all - newbie on the site ... metastatic ...


@Robyn wrote:
Welcome. We have a support group on here for neuroendocrine cancers. If you go to groups up in the top blue menu click on that and then click on the group and request to join. I was diagnosed in Oct last year. Had surgery then started chemo on 13 Dec so have just had my 2nd lot of chemo last week.Just take each day at a time and write a diary on what symptoms etc you get after each chemo then you can let your oncologist know each time when you have the next chemo as they may need to alter the dose. Also keep track of what meds you take for anti nausea and constipation as dexamethasone meds used for nausea make you consipated and you can see next time you have chemo what you did take and when.Good luck on your journey. Cheers Robyn


Hi Robyn

i was diagnosed with neuroendocrine cancer 4 years ago. Had surgery and 12 chemo treatments followed by 18 months of cancer free time. Just been told secondaries are active again and need 12 more chemo treatments. I know I got through the first time so I can do it again. I just take it a day at a time. I am also new to the site. I haven’t found many people with this type of cancer. Will definitely join support group online would be good to hear the stories of others that have this type of cancer. I can certainly use some support.  Thanks for sharing. 

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Occasional Visitor

Re: Hello all - newbie on the site ... metastatic ...

hello I'm Mikey, stage 4 liver cancer that has metastasized to three different parts of the spine.

and just eight months ago this all started as a pain in my side that got worse as the days passed.

finally after three weeks of the worst pain, I thought possible. this week I decided to stop the radiation and kimo . side effects from the treatments are mostly gone I can eat, walk, and not constantly getting sick.

I hope yours goes better than mine. I'm not giving up but I'm not going to die going through the pain and sickness that comes with it.

this fight you are about to undertake will drain you both mentally and physically.

so stay strong and remember these are your final times if you're sick it's ok to show it.

 

bless you mikey

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