New to Share? Come and say hello!

HarryB,

hi and thanks for your warm message. I'm getting more comfortable with this site and starting to find out about stuff.

I am missing my mum terribly but I do think that I will let a week or two pass until I fly over to see her as at the moment, everything is still under control. I feel like subconsciously I am 'saving up' visits if things get really bad. I know it's an odd way of thinking about it.



Big hugs,

Missmai, London

Caleta Hi.
Ithink you will find that neuroendocrine and carcinoid tumors are treated the same. It also depends where you live. What area are you and your stepdaughter in? Mention rare and the gp's seem to go into a flat spin.Ihope your journey gets easier .
Fran

hi im new to this site i am not sure what to write but here goes my father was diagnosed with grade 4 gliablastoma in october last year and has has 8 days of radiotherapy, im not sure how and when he will deteriate, i dont know what sighns to look out for , he lives with my stepmother but i think its going to get hard and im worried that we wont be able to cope this is the second tragedy in 3 years my son who was 5 passed away in april 2006 from alveolar rhabdohmyersacoma a rare muscle cancer i litterally cannot cope with everything, sorry to go on but my ad is tiring now and his stomach is so big can someone tell me what is going to happen what his symptons will be when we know he is getting worse

Sharonstar - I'm so sorry you've had to find your way onto here. That is so awful what happened to your son and now to have this with your Dad too. I'm thinking of you.



My Dad was also diagnosed with gbm (grade 4 or glioblastoma multiforme) in December last year. He had surgery and is currently undergoing a 6 week course of radiotherapy & chemotherapy. He is also very tired. It is such a huge shock and such a lot to take in. It is so hard not knowing what is going to happen or what the future holds.



Has your dad had surgery or the chemotherapy drug temozolomide?



There are lots of nice people on the thread called 'we talk brain tumours' and they are great at answering specific questions. They also find it helpful if you fill in your profile so that people can see your situation without having to read back. There are also other threads about glioblastoma but the we talk brain tumours one is busiest. You will get more replies on one of those than on this one.



I think a sign of deterioration is getting headaches again and signs of increased swelling. What signs did he have when he was diagnosed? Is he on steroids still?



Hope to 'see' you on one of the other threads. I'm sure you will find help & support there.

Rainbow Chaser
Hi Fran,
Thanks for your comment on neuroendocrine and carcinoid tumours. My stepdaughter lives near Exeter in Devon and I live in Solihull, West Midlands. I would really like to bring her to the Midlands for a second opinion but she has a 16 year old daughter who is still at school - and they don't live on a useful bus route! Not that I am doubting her current specialist but, if this type of cancer is quite rare, two (or several) heads might be better than one?
Caleta

HarryB,
Thanks for your kind note and the link to cancerbackup. What we are hoping to find is someone with the same type of cancer so that my stepdaughter would have a special person to turn to, share stories, etc. and vice versa. I appreciate your comments very much about this site offering friendship and support and we feel better knowing that we can share our experiences and ask advice as we continue along this awful road. My stepdaughter was accompanied by her sister (a qualified nurse) when she went to see her Oncologist and notes were taken. However, the Oncologist told my two stepdaughters that he didn't have the answers to their questions because it was such relatively unknown territory - hence my stepdaughter's desperation. I do agree with your suggestion, though, that a second visit to the Oncologist is needed, especially with regard to her ongoing treatment being administered correctly.
Thank you again for your support.
Caleta x

Bex3310
Hi there. So sorry to hear about your mum. There is a thread all about oesophageal cancer that I am sure would be very helpful for you, and it is very active. Click on this link:
http://share.macmillan.org.uk/Share/Forums/?topic=1000048
This will take you to topic where I am sure you will find advise and support
Love Harryb x

Hi Caleta
The Royal Marsden hospital in London deals in rare cancers I believe. I have spoken to someone on here recently who has been referred there, so maybe that would be an option for your step daughter to think about. I think they generally set up a treatment regime that can then be carried on at a local level. If she speaks to her oncologist again, even by phone she could ask for a referral perhaps.
Love HarryB x