Gastrointestinal Stromal Tumor (GIST)

[dunnc]

Just replying to the post regarding reaction to CT contrast. Years ago I had a mjmtinildular goitre. I had forgotten about it as I wasn’t symptomatic. I had an abdominal CT scan with iodine contrast. Apparently techs are supposed to ask you if you have any thyroid conditions. I got really sick and developed thyrotoxicosis. It was months of being sick before diagnosed. Request no iodine contrast as it does interfere with thyroid. Get your bloods done to check you haven’t gone hyperthyroid. I’m sorry no one advised you. It’s pretty negligent on their behalf and it v C kind avoid the suffering you might be going g through. 

[Reuben]

Hi Toni3, thanks for replying. My current oncologist on the Central Coast is from RNSH and he’s lining me up for some ablation at the RNSH if my tumours shrink enough over the next 3 months. I think it’s important to get them out ASAP to minimise the possibility of the cancer mutating and building resistance to the drug. I’ll probably be seeing your surgeon, there’s not a lot of experts around.

I’ve also got a precursor condition (since 2013) called MGUS that could turn into multiple myeloma which I’ve been keeping at bay for the last 5 years using 8g of Curcumin per day - this really works. It’s also helpful with gist but not as well as it does in MGUS. I’ve read quite a few science articles that IGCG (green tea) and Honokiol work well with Imanitib (Glivec) to improve the chemotherapy affects. I’m trying this now. I’m also taking berberine, feverfew, dandelion and omega 3. There’s people who are taking Loratatine (Claratyne) anti histamines to reduce the metastatic rate - I’d be careful with this one though. There’s also a lot of talk about Fenbendazole, a pet medication that reduces tumours! It really gets confusing.

I’m also keeping up the exercise and doing a lot of yoga. Really strict with my diet that is mostly plant based, fish and no red meat. I’m also keeping my cholesterol right down - I’ve had experience that this works in my MGUS. Also working hard to get my gut in good condition - too much evidence out there that our immunity system is really dependent on it. All the best and keep in touch and please feel free to comment on anything I’ve mentioned, good or bad.  Reuben.

[Reuben]

Hi Ferd1, I’ve got some largish tumours about 7 - 9 cm and want them removed. Who did you see and where did you have it done.........I would prefer to have mine done through laparoscopy. Cheers

[Jack-Es]

Hi Reuben 

Sorry to hear your story, hopefully you will get through this successfully . I left my story here a couple of weeks ago and people hear are kind and give some good advices...thank Toni introduced me some resources. Today is a week that I started my imatinib 400 mg, so far haven't had any issues with the medication. I will visit my oncologist on next Monday along with blood test. My GIST is about 16-17cm and my feelings is the medication is working because now I swallow my food with no difficulty and my pain has gone away. For 2 months prior starting medication I had very hard times swallowing my food and nearly impossible without water...now sort of magic happened, though it's soon to talk about the results.  I am 43 years old and living in VIC. Please let me know if you have any side effects with imatinib. Thx 

[Toni3]

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

[Reuben]

Hi Jack-Es, thanks for getting back to me. I hope it all goes well for you and you have  the right gist profile that responds well to Imanitib. I’ve been taking it for just over 2 and a half months now and I can honestly say I’ve had very few side effects which is lucky when you consider  what other people go through. The only things it effected were in my blood results: low neutrophils, platelets were down and for some reason, my cholesterol has been smashed - my LDL is well below average. My liver readings are also acceptable. I’ve had good shrinkage and happy with progress so far. I’m new to this cancer but I do recommend keeping as fit as you possibly can and be really strict with a healthy diet especially while you’re on Glivec. If you drink alcohol, give it up especially while you’re on chemo. I’m 63 and in NSW. Keep in touch and good luck with the medication. Cheers

[Toni3]

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

[Toni3]

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

[Reuben]

Hi Toni, great to hear what you said - you sound just like me. Take control of what you have, research the hell out of it and try to understand what it is you’re up against. I’ll keep you posted on my next set of tests and how well my supplements have helped. You probably already know but Lycopene (as a supplement) is good for getting the cholesterol down and science sources have also suggested it kills cancer stem cells....it’s used a lot in prostate cancer. All the best. Reuben PS I like your juicing recipes, I load mine up with linseeds, heaps of ginger, turmeric and greens.....starting to get used to the taste!

[Jack-Es]

Thanks Toni
All the best for everyone. Your drink recipe is awesome, great anticancer and inflammatory agents... I am doing similar...😊