GIST

I’m sure you will be given the all clear to travel and hope you manage to get away for some well deserved sunshine. I find this weather very depressing. Wishing you all the very best 

Hello, still enjoying the sunshine:-) just a quick question, how long after taking Imatinib did you feel/see the benefits? I have tumours in my liver and some are quite large it's making me very uncomfortable and I'm wondering how long it takes for the Imatinib to help shrink them. I know we are all different but wondering how long it took for you? Thank you 

Morning, I have had very little shrinkage apart from the first 12 weeks, but what it did for me for nearly 6 years was to maintain them, so there was no further growth. I have read and heard that Imatinib does shrink tumours for other users and to the extent where what remains can be dissolved, but this never happened for me. I started Imatinib in May and the following year I had a liver dissection and they removed a large part of my liver. But this is my experience I do think it reacts very differently for everyone. Have you had your first scan after being on Imatinib for a period of time. I think after this your consultant will be able to tell you how it seems to be working for you.  I will keep everything crossed for you xx. Please keep in touch and let me know how you get on. I’m waiting for my next scan hopefully at the end of this month at The Christie x

Thank you for the reply. No I've not had a scan yet as only been on medication for 2 weeks, I was just hoping they would shrink sooner rather than later! Seeing consultant end Aug so I'll ask him then. Good luck for your next scan xx 

HI I'm a imatinib user for 6 years  and I can tell you with certainty that it has stopped my  tumour growth  (I have 3 tumours)   These are a reoccurring  illness  from 20 years ago.   I would suggest you should be aware this medication  helps  to delay or stop growth.   But I am awaiting the magic drug Imatinib to stop work  then it's on to sunitib   and another new group of side effects 

OH By the way I'm in Australia  and was a patient of Dr Dimitri  in the USA when he pioneered imatinib use for us. 

If you have a question on my path just ask

Greg In Aust

Hi Greg

Glad to hear Imatinib has been successful for you and long may it last. 
nice to hear that it is still keeping your tumours at bay

Take care and good to hear from you in Australia

Good luck for your next scan. Let me know how you get on and I will also share my results   Take care

Home after a lovely week in the sun. I've got quite a bit of fluid retention around my ankles and feet (never had before). I know this could be a side effect of the Imatinib or could be down to the heat/flight?

My question is, has anyone found they have gained weight quite rapidly since starting Imatinib? And if so, did it stop after a period of time and reverse (with diet and exercise)? I've only been on the medication for 2 weeks, yet the scales show a stone on! I'm guessing some of that will be fluid retention, I've honestly not eaten for two anyway! X 

Good to hear from another Imatinib user. I'm glad it's stopped your growth for the past 6 years. It's scary when you are told you can not be cured as your future, then is uncertain. So im pleased to hear that more years have been gained due to the medication we're given. Thank you for your post:-) 

Glad to hear you had a lovely time away.

Whilst on Imatinib I was prescribed Frusimide for water retention and I’m now on Sunitinib and still take one every morning, which helps with the water retention. I put over a stone on whilst taking Imatinib, if I’m right I think the side effects can state weight gain. I never lost it but it stayed at that and I found it hard to lose it. However I’m now taking Sunitinib and have lost the weight gained over a period of nearly 2 years without trying! But I will take that as I find the Sunitinib side effects slightly worse

if you do think you are retaining water it might be worth mentioning this to your GP or consultant. Since being on Sunitinib I’ve had a small DVT in my right leg, which apparently this medication can cause and now if travelling any length of time I wear flight socks

Hope everything settles down for you

Take care