GIST

HI all    I'm in Australia  M62   but have had GIST found  over 22 years ago   after surgical removal  and clear for 17 years it returned  Initially Imatinib was only on trial  for Cronic Leucumia   now we all  have it for  initial treatment    Now other medications like sunitib  have been developed  and renofarb  (I think it's called)  is the next trial  new to Gist patients but  as I read the study it's really  in its infancy  and it's efficacy  is in question so it may never be offered.

Have either of you seen this type of surgery.  (Link below) It's the type offered to GIST patients here in Australia when normal surgery cannot get to it.  Is it available in the  Nhs system   

https://stgeorgeperitonectomy.com.au/

It's radical but quite successful.   I was on the list but so far Imatinib has kept me growth steady.   I Have growth in 4 areas  including on a kidney. 

Good Luck 

Happy to chat even though I am in Australia 

Sorry to hear that your GIST has returned but hopefully it can be maintained with Imatinib.

I personally have not heard about the surgery you mention, but will look into it and ask at The Christie where I’m being treated at my next visit. 

it’s always nice to hear from someone in a similar situation

Take care

This type of surgery  I believe was developed by  a Professor David Morris  in Sydney Australia    it was only available as a surgery of last resort.   IF you go to the website and read about it it's a very invasive  surgery  that costs  upwards of  300k (aust) per operation and the team for your surgery is around 50 surgical staff.   

I stress it may not be available in the UK   NHS because of cost,

as you say you can ask.   I would be interested to hear if your UK  medical team have heard of The perotonectamy operation 

Thank you

I will definitely keep in touch I'm hoping I can still work 3 days it actually does me good to keep busy. Will let you know how I get on when I start sutent may need some tips lol xxx 

I will be thinking of you and yes please keep in touch and if I can help in any way at all, I’m more than happy to do so. Take care x

Hi I just thought I give you an update they had an MDT meeting Wednesday and I had a call Thursday from my specialist nurse saying another radiographer has looked at all my scans and he doesn’t think there’s enough change to warrant changing my drug and to start taking my imatanib again I was like are you for real I literally had to come home my head was all over the place because even two months ago I had growth and they said if I had more would growth I go onto sutent and it had grown more so I honestly don’t get how one radiologist can say not enough.I have managed to get an earlier appointment Tuesday this week because I need answers.I haven’t really been sleeping because I had came out last week with the worse news to then be told something different.And obviously the nurse could only tell me what had been said not the many questions I now have.

Sorry for long message not sure if you have ever had this happen.

I be glad when Tuesday is here hope your ok xxx

Sorry to hear that you feel so confused. But at least you have got an appointment to discuss. Just make sure you write everything down that you want to ask or/and take someone with you

Personally I would loved to stay on Imatanib as I believe it is a good drug and effective when it works for you

i was very shocked at the time, when they told me that Imatinib was no longer working and that I had developed several more tumours. I think I had become a little complacent and although Imatanib never shrunk my original tumours it maintained them for over 5 years

i was told that Sunitinib might only be effective for me for 12 months   But in fact some of my tumors have this time shrunk a little  I have had more side effects with Sunitinib (diarrhea and feeling very very tired)  but I will put up with that if it’s working 

My tumours are currently on my stomach and diaphragm and also in my liver  I’ve had a large section of my bowel removed and a large chunk of my liver and gall bladder removed  not sure where yours are?

I will be thinking of you on Tuesday, please let me know how you get on x

Hi there just thought I let you know how I got yesterday.So basically in the MDT meeting they convinced my oncologist to change his mind because they thought he was being hasty.Apparently the new one might not even be there because they said depending how the bowel lies when the scan takes the images,they aren't concerned about the lung one and they saying the one that has increased not enough to justify changing drug because I have alot if disease that's all still stable.So staying on imatinib and getting a scan in 3months again.He also said I have nothing to lose staying on imatinib for another 3months because no one knows how long sutent will work for.

I had my surgery in 2016 when I had a 15cm mass removed it was in the  jejunal but when it was removed I was told I had satellite nodules.I know I have a peritoneal disease and para-arotic that have appeared but imatinib keeping them stable.

Hope yr doing ok when is yr next scan.In a way I'm glad I can enjoy Xmas without side effects of sutent xxxx 

Oh I think that is really good news.  I didn’t want to say at first but when I was put on Sunitinib I was told it may only work for 12 months but I have been on this since last December and although I’m pleased it is slightly shrinking my tumours, I think Imatinib had much less side effects. My concern is when this no longer works, where do I go from here?  When I asked the response was rather vague. But I think everyone with GIST is affected very differently. My next scan is at the end of this month. I have regular scans every 12 weeks and see a consultant every 12 weeks usually a couple of weeks after my scan and I have bloods and get my scan results. I had to give up work at the very beginning of my journey as I was so tired and sickly all the time and my job involved travelling to different sites all over the country. Are you able to manage reducing you working hours and continue working?  I’m so pleased for you and that you will be able to continue with Imatinib   Take care and please keep in touch x