GIST

I will keep everything crossed for your next scan please let me know how you get on.

Im sure there is a third line drug for gist called Regorafenib I think it’s approved in the UK but hopefully you get along time on sutent.

I still manage to work 3 days mon tue and Thursday so at least I get a days break because I do get very tired.I think my work would support me if I did change drug and had worse side effects I would hopefully still be able to work I would need some income to survive.

I actually don’t know your name I’m Sharon and it’s really nice for you to keep in touch xxx

Hi Sharon my name is also Sharon. Small world!!  Although I had guessed from your log in name. I only ended up using GIST as I tried a few name combinations and they were already in use

i hope you continue in good health and are able to keep working as long as you wish to. I was lucky really with my employers too as they agreed to make me redundant as I offered to hand over and finish off from home some projects I had. My job entailed travelling and auditing offices around the country, which I was not able to do anymore

Im hoping to that I will manage for some time before I need to look at other options. I will of course keep you updated and I hope that you will do the same, as it has been lovely chatting to someone who understands

i have got my appointment with the consultant for the 2/12/22 so I’m guessing I will get my scan at the end of this month. The scan appointment usually only arrives the week before the scan is due

Take care and lovely to chat with you. Wishing you all the very very best

Sharon x

Oh wow I can't believe your names Sharon too what a small world as you say.Your job sounded interesting especially travelling around the country.Im a Dental Nurse and really enjoy what I do and putting people at ease.I will keep everything crossed for positive results for you my next appointment now will be in Jan so at least I have a bit of breathing space.

Yeah it is lovely having someone who understands please keep in touch and take care xxx

I will be thinking of you. Take care and keep in touch x

Hi Sharon I just wanted to say wishing you luck on your results I know you said they were this Friday keeping everything crossed for you l.My next results will be 27th of January that will be interesting for me Please let me know how u get on xxx

Aww thank you. I don’t know what’s happened this time I usually have a scan before my appointment but one hasn’t been arranged and I had to have my bloods last week and I usually have them the day of my appointment. I tried to contact my nurse left message and emailed but had no reply. So just going to go and see what they have to say. And my appointment is now tomorrow. But I will let you know how I get on. So kind of you to think of me x

Hi. Just to update you, my latest scan showed an increase in one of my tumours. But they are not sure if this is because it may have been flattened by my bowel. So they are arranging another scan. I’m hoping this is the case as there has been no change to any of my other tumours 

I’m battling on with the Sunitinib. I have periods of time where I struggle with tiredness and diahrea, but managing it with codeine and Imodium. 

I hope you had a good Christmas and New Year and you are keeping well x

Hi Sharon Sorry to read yr news I'm really hoping it's yr bowel that had flattened it.I had that happen to me. had one where they thought mine was different but then it was ok on the next scan and told me your bowel are always in different positions.I had my results Friday and mine were fine but after what happened to me six months ago I keep waiting for it's time for change.So my next scan 3 months.Please let me know how you get on I'm here if you need to vent or talk. Keeping everything crossed for you xxxx

Glad to hear about your last scan, how are you feeling. Still coping with the meds and managing to work?

it just feels like I’m on a roller coaster from one scan to the next. But onwards and upwards. I have been really tired and struggling with controlling the horrible side effects, but I know it will ease off as it usually does 

I hope you are keeping well and thanks so much for the offer of support 

Take care xxx

I definitely agree a roller coaster and unfortunately I can't get off.I not too bad on imatinib just get really cold puffy eyes and fatigue,but nothing that bad that's what I dread going onto the drug your on I have heard it's alot harsher.I still work 3 days a week and would hope I can still do that when I have to go onto sunitinib.Let me know how u get on