Gastrointestinal Stromal Tumor (GIST)

[Ferd1]

I was diagnosed with a 16cm GIST in december 2018 and started on Imatinib 400Mg day mid January 19, due to internal bleeding in March came off drug for 3 weeks then reintroduced at 200Mg day stepped up to 400Mg after 4 weeks. Tumour now 12 cm am waiting for an MRI and Surgeon will decide when to operate when he gets result.

How was your health after having such a large tumour removed?

[Jubbly]

Hey Ferd 1, how are you going? I'm waiting for someone to agree that I need my gist removed but interested in your experience 

Jubbly

[Ferd1]

Had my Gist removed in late October 2019. The surgeon did a remarkable job of getting the 12 cm GIST out laparoscopically 

I was encouraged by my Oncologist to restart taking Imatinib 400Mg as day for a further 2 years as protection against getting another GIST however it made me so ill I decided not to take it and rely on regular scans.

My appetite has returned  and I am gradually putting weight on. In 2019 my weight dropped from 80kg to 61 and it has now 65

[Toni3]

Dear Dunnc

My advice if you are in constant pain is to get a second opinion.

I had chest pain, some reflux and a cough that became more constant over 4 years. I was told it was reflux until the severity and frequency of the pain made me see another gastroenterologist who ordered an ultrasound before a planned colonoscopy & endoscopy. The US showed up something serious and the CT was done that day which showed a 6.5cm gist on my upper stomach that was pressing on the diaphragm. I had full surgery to remove it & symptoms went straight away but recovery took a few months. I was lucky to have it removed because the GIST had the KIT mutation making it resistant to the drugs.

My first 6 months CT has shown a 3mm "cyst" in the liver. Has anyone had anything similar please?

I have found the lack of information and advice on what to expect a real concern. My surgeon just said "surgery was enough- all good" 

[Toni3]

Hi Ferd1,  I had a 6.5cm GIST removed from my stomach last July, fortunately before it started to bleed although the pain was becoming quite severe but had been misdiagnosed as GERD for a couple of years! I feel so grateful that I sought yet another opinion and found a lovely lady gastro who listened to my symptoms and sent me for an abdominal ultrasound and I had a CT that day and was operated on by a great surgeon within 10 days . I was quite nervous about the possible side effects of Imatinib as I have Lupus and get strange drug reactions. The oncologist did the genetic testing first and found that the monster had the rare mutation to make it drug resistant, so no drugs for me. However, I have found mindfulness meditation extremely useful to avoid taking pain relief and I know it can improve your immune system.  The surgeon did say it would take six months to recover and he was correct. But no one told me to expect such fatigue and muscle pain. My physiotherapist explained how the ongoing pain was due to the core muscles still recovering and gave me gentle exercises so that I am now so grateful to be feeling well and able to walk  during this pandemic crisis.

The good thing about dealing with GIST is that I'm not too stressed about the virus. I am enjoying every moment with my husband, my little garden, reading detective books, talking to the grandkids on FaceTime  and even finally trying to get back to writing the literature review for the PhD.

I have only put on 1kg - up to 49Kg now, but I'm enjoying my healthy diet and feel well for the first time in about 5 years. 

Listen to your body and rest when you need it and just be grateful for the increasing number of good days.

[Jack-Es]

Hi guys 

I am reading about your experience and living with GIST,  Hopefully you all get better and relief soon.

Here is my story:
recently I am diagnosed with a huge GIST (16-17 cm) attached to my stomach outside and I will start immitinib on next Monday. I live in Victoria . After many examinations, CT scans, PET scans, biopsy the Dr suggested going on medication for 3 months then CT Scan and see the progress. He told me something that I was devastated , in case of surgery his team decided to remove whole stomach and looking like disaster for me...I am searching desperately everywhere to get 2nd and 3rd opinions on this problem ..If anyone share your experience and help me on finding proper Dr that will be good. you may contact me with my email if anything helpful for me: hamid2005us@gmail.com.
Appreciate it.

[Toni3]

Dear Jack-Es

It is quite hard when you get such a diagnosis with so little information about this tumour.  I was treated at Royal North Shore Private Hospital in Sydney and my surgeon was Dr Steve Liebman was excellent although, he  mainly does bariatric surgery. The tumour was only 6.5cm and it was also on my upper stomach but he only removed a piece of stomach about the size of 50 cents. My fist 6 months check up was all clear of recurrence and about to have another CT tomorrow for the next phone consult with the oncologist. I am not as scared about this one as the first because I am now feeling better than I have for some years and only get the extreme fatigue occasionally now. It took a full six months to feel back to "normal" . Although I started walking again within a week of getting out of hospital.

I have just done a quick google search "GIST treatment australia" and found two research studies about GIST in Australia that I never found last year. One is from ANZCT- the clinical trials registry

https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=366281&showHistory=true&isReview=tr... 

and another from the WA Cancer Council showing a trial by Professor Ruth Ganss at the  Harry Perkins Institute of Medical Research- although this trial is not recruiting but was examining  how to improve Gleevec therapy 

 https://www.cancerwa.asn.au/cancer-research/successful-funding/2018-research-projects/ccwa-gastroint...

I will do a bit more research and get back to you. You are lucky if they can shrink the tumour with the new drugs. I had a drug resistant type of tumour so was lucky to get surgery and just have to have 6 monthly CTs to check for recurrence. 

I found mindfulness meditation has really helped me deal with the stress and just feel happier and grateful for my family.There are some free apps you can download one is : 

https://www.smilingmind.com.au

Hope this helps, the more you know and can feel as though you have the best specialists looking after you, the better the outcome. Also keep active but listen to your body and rest when you feel tired. I have read dozens of books and just try to enjoy every minute.

Best wishes

Toni3

[Jack-Es]

Hi Toni

Thank you very much for your message and awesome details. Hope you are ok and nothing comes back again. Stay safe and appreciate your search and details about GIST.

Have a great day. 

[Reuben]

Hi everyone. I’ve just joined up with this forum tonight. I had a gist removed (5cm) from my duodenum in 2012. Pathology stated that it was benign and my surgeon did a CT scan about 4 months later to check on his work.  He cleared me and said I was fine and to get on with my life. In December 2019 I was diagnosed with tumours (14)  in the liver - I could not convince anyone it might be related to my first Gist in 2012. I underwent a lot of unnecessary scans and tests until a biopsy confirmed metastatic gist, the largest was 13cm. I’m now on Glivec which is shrinking the tumours quite well. There has been a lot of stuff ups along the way and I’m not overly confident in my medical team. Does anyone know of a really good gist specialist anywhere from Sydney to Newcastle who they would recommend? If anyone wants to talk alternative strategies to compliment their Glivec I’d like to contribute to than conversation. All the best to everyone.

Reuben

[Toni3]

Hi Reuben

You are lucky the GIST is working, I am seeing my oncologist at RNSH and he is very nice. The surgeon was excellent and I believe RNSH is trying to become a centre for treating these monsters, if that helps.

I just had my second follow up CT and no recurrence but 3 cysts in the liver that I am told not to worry about???? Also got a bad delayed reaction to the CT contrast this time with nausea, vertigo, fatigue and anxiety. Wonder why? I have Hashimoto thyroid disease so that might be related to the reaction,  but ended up having a head CT to rule out any nasty. 

Did you have any cysts in your early scans? Re alternative help I am seeing a doctor in Roseville who does acupuncture to keep me healthy and I think it is helping. She also did allergy testing and confirmed what I suspected plus some extras and now my constant hay-fever and chronic fatigue has decreased. I am aslo trying to do some meditation and gentle pilates to keep calm and help my core muscles recover and walking every day to keep fit. Research shows exercise definitely improves outcomes with all sorts of malignancies and mindfulness meditation helps us to deal with all the associated stresses. I am also taking Magnesium, CoQ10 and some vitamins. I have always tried to have a healthy, sugar free diet so it's really hard to put on the weight I lost about five years ago when I'm sure the monster started. Keep positive and good luck with the treatment.

Has anyone else developed problems with the contrast? Toni3