GIST

Hi 

I'm not familiar with GIST and sorry to hear about the side effects the meds bring, but it is good to read that you have had stability to the tumours over the last 5 years. It's hard not to look into the future with this and worry...I'd do the same...but I would say that new medications are being developed all the time and it might be that more are available as you move forward that are an option for you. I've also read about people who have success beyond the estimated period they expect the meds to work for as they often give a median time and everybody is different. Are you part of any Facebook groups for GIST or sarcoma alliance? as I've looked on those to see what others are prescribed who have similar to me so I can ask my oncologist about them, 

Annie x

Thanks Annie so lovely for you to respond. Yes I have looked online etc. but I must admit my way of coping is a bit bury my head in the sand and deal with things as they crop up. Probably not the best way of dealing with it but it does help me to keep a positive attitude. I have great support from my family and friends and the nurse I’ve been allocated is absolutely amazing. I think my results in December knocked me back but moving on and making the most of every day. 

Sounds like you’re having a tough time, sorry about that. There’s someone on Instagram called thatgistcancergirl who posts about her experiences, so you might find that useful. 

Thank you. I will definitely look her up. 

Hey GIST    I'm in Australia  have GIST  2nd time and have been on Imatinib now for 5 years.  Hate the side effects  but it is what it is.   From what you have written  you seem to be describing how the bloody growth  keeps changing.   The next phase  in discussion with my Oncologist  is to have the Sunitib treatment.  If you want to do some googling  look for a DR in the USA called George Dimitri without his study  Imatinib would not be here today.       

Hi Drongo1234 I hope you are currently well and managing the side effect of Imatanib. I have been on Sunitinib now for almost 6 months and although the side effects are a little worse, still manageable. Thank god for Immodium. Thank you for your reply, it’s always nice to hear from a fellow GIST patient. 

How goes the Sunitinib cycle    Can you explain it to me .  I am led to believe it's a 28 day cycle  an then a break them another cycle.    I CT every 6 months   to see if there is any progression.  What about you     My growth is in 3 places   and was going to have a peritanecamey  but the operation was worse than the cancer.  On of my side effects is photosensitive  and living in Australia  Big hats and sunglasses  with plenty of sunscreen  is my normal outing.   

Good luck with the drug 

Hi there. My largest tumour was on my small intestine I had this removed and ended up with an ileostomy bag, which I did not like at all. I also had 2 tumours on my liver   6 months after my first op I had a liver dissection, but fortunately they were able to reverse my ileostomy at the same time as well as removing my gall bladder and for a further 4 years the Imatinib kept my additional tumours in my liver from progressing. But in December last year further tumours developed and I was put on to Sunitinib. I take 3 capsules every day with no break at all. I do have the greater cell production form of GIST. at the moment the Sunitinib seems to be stabilising the tumours. My main side effect are diahrea and feeling very very tired. But at least my tumours are stable. I think the amount of Sunitinib can vary depending on GIST type. I have scans every 12 weeks. I hope all goes well for you and whatever treatment and dose works for you. I can imagine with the climate you live in that the sensitivity is not good. I do have to use baby toothbrush and toothpaste and my skin is sensitive and I use immolients, which help too. I wish you all the very best x

Thanks for the comprehensive response.  Not surprisingly our initial paths seem to in parallel with the exception of I carried a colostomy for 9 months post  initial surgery  to remove some growth  22 years ago..  They informed me they really didn't know too much about GIST then  other than  my tumour was  C-kit  +   and the mitotic rate was <50.    Then the oncologist  were talking  guinea pig  trials as I was only one of 3 in Australia with the condition.  Imatinib treatment in trail and it was 100k a month if you could be accepted into the trial.  Needless to say I didn't qualify.    Jump forward 17 years  and my urologist thought he would do a routine Ct  and low and behold   identified more growth  but in very much  an inoperable places.    I am very lucky and very aware that imatinib will only work for a undetermined period  each of us it will be very different.   I know sunitib  is on my horizon sometime and I will follow you treatment path  Im glad that sunitib is helping you.  How do you get on without your gall bladder.   

I have one question that my curret oncologist have discussed is that if he detects my disease progression  he will increase my imatinib to  600mg twice a day .  Did they do that for you.  My oncologist has  indicated that was the common global treatment regime.  I suppose there are enough of us now to undertake research and oncologists are interested in the disease to come to an understanding of treatment regime's 

I myself do not look forward to the move to sunitib and what effects it has.     I sometimes wonder it the treatment is worse than the disease.   

Good luck in the future 

Hi there I have been living with gist since 2015 it was found by me having bowel cancer which was so early but my gist growth was 15cm big in my abdomen.I been on imatinib 400 mg then two yrs ago 800mg due to growth.Today was the news I have now more growth and a new one so plan to move onto sunitinib they say surgery is out the question because I have to much disease. I've stopped imatinib today for two weeks and start in to weeks praying this kicks it butt