hi I to have neuroendocrine cancer and have had for four years now. I do know how you feel it is so hard to find others for support. I have had two rounds of chemo 12 cycles each time and I am really finding the side effects caused by chemo just keep come. I have found trying to get psych support impossible even though I am a social and trained in many forms of counselling. I just really want to chat with people like me that have this form of cancer. There is some support out there but I don’t thing it replaces peer support. Would love to start a chat group for those with neuroendocrine cancer so we could all support each other during really stressful times. My contact is lindabrenvos@hotmail.com.  ... View more

Just be honest with them it’s hard I know   I told my sons that I never want to hurt but the reality is or was whilst they were upset the are handling it in their own ways. For me it’s hard to see them suffer but I fell that I am no longer needing to act as if it’s all ok because it’s not. At least we are all going through it together as a family which strangely brings with it comfort to all. Everybody can be just how they need to be.  We have cried together and still enjoy the time we have. Creating those good memories will I hope help my sons and family when I am gone.  good luck just follow your heart.  ... View more

Thanks for your words Robert. Unfortunately chemo this time is not work   Chemo has knocked out receptor cells on cancer. Options know very limited none other than more chemo really. But with all the side effects this time I am not sure if I want more chemo. Already having blood transfusions but only one to go. Am currently seeking second opinion privately but expensive on a pension.  I am so glad you are well enjoy every day.  linda ... View more

@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.  ... View more

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.  ... View more