Clinical trials

Hi Sparky2

Sorry to hear that you did not get on a clinical trial, Not been involved on one with my wife but have talked to a couple of people on here who have been involved in trials but not with sarcoma. 

<<hugs>>

Steve

Hi

Not been involved and don’t know anyone who has.  Sorry.  Mine is inoperable, but had shrunk somewhat on my last scan in September 2022 after being on 300gm of Imatinib since June.

Thank you for your reply. It's great that your tumour shrank!! Do you have liposarcoma? If so is it well differentiated?

Sparky2

Thanks Steve, I think trials are a bit rare, just like sarcoma!

Thanks for your reply

Sparky2 

• Hi again Sparky2. Mine is a GIST, it gastro intestinal sarcoma tumour. I had an op in November 2020 when it was discovered attached to the bowel. It was removed with part of the small bowel and much else that was unrelated. Then started Imatinib 500 GM for 3 years but not happy with it after 6 months so stopped for a year when it came back with lots of tumours round front waist area apparently attached to skin.. Then started lower dose of Imatinib in June as stated before and now ok with it, only occasional sickness. Liz

it's great to hear that you are coping well with Imatinib. Long may it continue!

I am inoperable with no treatment whatsoever. I'm determined to be as physically active as I can be for as long as I can be. I wasn't very hopeful of getting on the trial but would have liked just a little glimmer of something. Meanwhile my tumours are growing away, albeit mostly slowly apparently. So that's good!

Good luck Liz xxxxxxxx

Really sorry to hear that.  I’m inoperable too, but I need a hip replacement and am more concerned about that than the cancer as I am quite immobile.  However I am 78 and have had a good life so it might be different if I was younger and the cancer was painful, which at isn’t - so far anyway.  Try to keep your spirits up and continue doing what you can as I always find it is better to keep occupied with normal things you enjoy doing.

It's true that being busy helps. If I stop, my mind just starts spiralling down a hole and I end up so down about everything. So I am always doing something! 

I do hope there is a chance of a hip replacement if your tumours remain stable. 

Best wishes

Sparky2 xx

So do I, but my GP not sure he will.  I write books when I can get my head round it, a personal memoir at present, which I started ages ago, but I ran an oral history group of village life from 1925 to 1965 and then wrote it up, which has sold quite well locally.  This kept me going all through lockdown, which was very useful.  I am now typing a book for someone else.  What do you do to keep you busy?

Hi Liz, I do some form of keep fit, step aerobics, static bike, dance class, whatever I can, most days as well as reading, sewing, walking, family history, looking after in laws, renovating our house etc etc etc!!! We have just got back from a stay over with our daughter who lives 4 hrs away, which was lovely. I am basically trying to keep going whilst mobile! I currently have a knee like a small football so having to miss my normal classes. I can already feel the weight pile on, I just can't lose weight!!!!!