Dear Amanda It is the scariest time for you but as a retired dentist and a mum of 5 including a disabled daughter I want to say to you how lucky you were that this was found by a dentist. That increases your chance of recovery so much more than if it had progressed till you had symptoms and went to a doctor. Also you are thinking of your beautiful three children so you have such a strong will to come through any treatment. I found that been grateful for getting a relatively early diagnosis and concerned about my daughter helped me through my diagnosis and treatment almost two years ago. I also found having to care for someone else helped me make a rapid recovery but learn to accept any offer of help from family and friends. also when the fatigue hits learn to put your feet up for short rests but keep active when you can. I listened to the webinar on exercise and recovering from any cancer tonight which was great. Any form of cancer is scary and bad luck but we can help ourselves to recover. You will get through this and appreciate every day even more than before your diagnosis. Enjoy all the little things and listen to your body for what you need .😘 ... View more

Dear Donna, I can so relate to how you feel  and it is good to talk about it with others who can understand. I had a rare GIST on my stomach removed 15 months ago. My scar is not quite as long- from belly button to breast and like you I have a wonderful husband but he doesn’t talk about things or feelings even after he had melanoma surgery this year. What no one told me was the muscle pain and terrible fatigue and weakness afterwards. Once I knew that was part of the healing I could accept it and just rest when the fatigue hit. I have found walking in nature has been one of the best things to do & reading all sorts of books when you need to just rest. I tried rubbing my scar with vitamin E oil. It has made it almost disappear and I have been taking CoQ10 with ubiqinol to help healing.like you I feel very lucky that the tumour was found in time to remove it intact as it proved to be drug, radiation. And chemo resistant. I try to enjoy every day and simple things like going for a coffee with my husband is special.. I nearly died after a miscarriage when we were first married and I was told I might need a hysterectomy but I decided to try and adopt even a special needs child. Again I was lucky and had a family but my daughter has Down syndrome then at 14 - after 2 years and 13 specialist consults we found she had Rokitanski syndromeAnd she had to have a hysterectomy.. my life has been very much a series of ups and Downs but appreciating all the good things in my life has made me realise how fortunate and lucky I have been..My sister survived lymphoblastic leukaemia 36 years ago and we both think  that our attitude of believing we will survive has helped us.  we all have down days and sometimes the body just needs time to heal and rest and a good cry can clear the air. Reach out when you need to and often easier with other survivors than family. Keep well Toni ... View more

Great To chat Reuben and Jack E I forgot to add apple cider vinegar (with the mother) in my cold-flu recipe drink. Have found that has really helped to reduce the aches from the Lupus. My cholesterol went up a little on last test so will try the lycopene supplement as well. Had a stupid fall on my knee while trying to keep out of the way from another oldie in the supermarket and now can't walk until I get to see a knee specialist. It really affects the mental health! Keep well and keep safe Toni3 ... View more

Thanks Jack,  sorry didn't see you message sooner My latest scan shows no recurrence on the stomach but a bad reaction to the contrast. I used to read my children a book called "What good luck - what bad luck" It is pretty much what we are all going through but the good luck is treatments and diagnosis are getting better all the time.  Hope your treatment is going well Toni ... View more

Dear Reuben Thanks for all the great information. I have been using tumeric in everything I cook and make a drink that is great for any cold/flu. I boil up a sliced  whole lemon, piece of ginger, fresh or powdered tumeric, cinnamon, and 6 cloves in a small pot of water & then use it diluted with either hot or cold water. Add manuka honey + garlic if you feel a bit coldy. Never knew about Honokiol  before but it sounds like it is worth a try. I have also found I can only eat small quantities of lamb but no other meats and love lots of vegetables or fish. I have an overactive immune system with multi autoimmune problems, although no Lupus antibodies in my last test. I am sure that autoimmune problems can be a pre-curser to these problems and that there are genetic links. My sister had lymphoblastic leukaemia when she was 17. Back in the early 80's it was a death sentence but she survived. While she was on chemo I used to take in a beetroot/carrot/celery/apple drink to her every day. There is good evidence now of the protective effects of the red vegetables. We also gave her 3000mg Vit C, a multivitamin and iron. I found the beetroot juice gives such a pick up when you start to feel really exhausted. A dear friend who survived multiple metastasis of breast cancer for more than 30 years believed strongly in the healthy diet/ exercise routine but she also believed that taking control of your treatment, and believing in what you are doing, does work & keeps us healthy. Keep doing what you are doing and I will also try the Honokiol and drink more green tea. Remember the liver has great powers of regrowing once the problem is removed.Go for the surgery once they shrink it down.  It is great to chat to others who understand the problems. At first I found it hard to find much information but there seems to be more information all the time. I also have hypermobility joint disorder so i have to be careful with exercise and have damaged ligaments at a gym and even with Yoga so now I do Tai chi ( do miss the class) and the mindfulness meditation. Wish us all good health. Toni ... View more

Dear Duncc Thanks so much for your reply, that makes so much sense. I did tell the technician I had Hashimoto disease and was taking Oroxine & she said "that is OK". I didn't get the reaction on the first 2 scans but this one felt different immediately. It seemed to hit me in the head much more strongly than before. I am wondering if the dose was stronger this time. I am only quite small (49Kg) so am wondering if she just used normal adult size dose. Anyway my oncologist has said  that next scan will be without contrast. I've had the bloods done and waiting on results now. have also taken extra Vitamin C & E & CoQ10 to soak up the antioxidants but still shaky & fell in supermarket today while trying to keep away from another old woman who wouldn't move over.  Thanks again & keep well Toni3 ... View more

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 ... View more

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=true  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-gastrointestinal-stromal-tumour-initiative-gi/ 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       ... View more

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. ... View more

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"  ... View more