Yea Marion’s voice is so beautiful wet therapeutic x thank you so much xx

You have a great support system

the question is how long have you been living without a stomach, I'm 5 months into recovery and it's going very hard, I'm not sure if I'll succeed, how long did it take you to recover?

Hi!! How are you doing?? Anyone have updates?

Gist runs I. My family I've lost a few family members. I've got it in the oesophagus ,and 16 months and still waiting for sergury ,

You are an incredible lady ❤ xx

is it better to stay on imatinib 400mg or change to sunitinib right away for metastatic gist on liver.thank you.

I had a benign gist removed at the Royal Marsden three years ago. My pyloric valve was also removed in what the surgeon described as a 'roux on y' procedure. It would be great to be able to communicate with other people that have had the same procedure.

Over a year waiting for operation gist of oesophagus gist runs in family lost mum sister to it sergan still hasnt responded to none of the gps six letters they have written to him my symptoms have changed .im getting no care at all

And what about nutrients, vitamins, minerals ?

What an absolute legend! I just adore this ladies words I watch all her videos - and so well spoken! My mum has just been diagnosed - what a relief in people like you. God bless xxx

My mum has just been diagnosed and I can’t thank you enough for your videos and words. So well spoken - educational 1:13 comforting. Thank you ❤

My husband have gist tumar

Love the accent

'Promo sm' 😻

Ivo is the GOAT

I wonder, with a GIST found 2018. Malign ,slowly groning. No op ,no medicin because of other drugs and multisick? The Expectans is taken away even though avSecond opinion, because of other sickness to. I Wonder,what do I do If I want to know if its spread or what it look likes even If they Can’t do anything? Ihave not ever had any taem around me as far as the GIST concern. The Sarcoma center in University hospital Lund found it theGIST 2018, then when they coldnt op me , didn’t want anything to do with me more. Second opinion sarcoma center Karolinska hospital in Stockholm. Can I please have an advice what to do, when notone of my doctors Will examine the .Gist. One control since 2017./ Katarina in Sweden

Can a non treated malign GIST give hyperpigmentering ,on legs an feet an A terrible pain in my legs .when it’s spread. Icouldnt get op or get some medicin because of Multisick and many other medication.. They found the GIST 2018 ,then 1,6x1.6 cm. One ktr since then No more expextation, second opinion Done. How do I do. I want to no what it is looking like today. Even If there is nothing to do. I want know If it:S spread. Very thankful for answer. I dont and havn’t ever had a team around me as far it s about the GiST./katarina

Hi, I have been on Imatinib for 2 months. I felt so Ill that my Oncologist stopped them for one week, then started me again on a half dose. So far the side effects are less. Fingers crossed!

Thank you for this word !!! My husband just had a partial gastrectomy and we have much to learn about how to improve his new eating and lifestyle. He has also had a recurring cancer diagnosis and this is the best way for longevity we were told to be a second time cancer survivor. The Lord bless you and yes ,I am with you about the new cancer treatments success out there today

Hey Amalia, how are you today? Can you keep your weight and healthy? Hugs from Portugal

Hello. Im a women from Sweden with a Gist tumor since 2018.Back then it was 1,6x1,6 cm It was malign but slowly growing. They dosen t even want to control it on sarkom center in Sweden ,because Im multisick. They can not operate and no drug treatment ,because of other diseases. I wonder can A Gist when it is spread, be like hyperpigmentation on my underlegs and feet,and such a pain that I could hardly walk? Wonder If someone knows? Get back to you tomorrow. Must go to sleep.

This interesting but sed I appreciate

Please, can anyone tell me if there is any new experimental treatment that has a real chance of becoming a new protocol against GIST?

You look so healthy and radiant compared to the before pictures. So glad you are thriving, wishing you healing and health.

Thank you for your time in presenting this information!

Wow you are amazing lady.

Thank you for sharing! I have just come off Imatinib, I have been taking it for 3 years after removing the GIST. I thought I would be feeling like I did prior to my cancer. But unfortunately I am feeling worse than when I was on Imatinib. I felt confused and really pushed myself to act normal. But now I realised the withdrawal is also another journey and I have to take baby steps.

Hello, Hope you are doing well and this message finds that they have a treatment plan for you. I To had the majority of my stomach remove along with my Esophagus valve removed a few years ago. Recently found that I have a almost 9 center meter Gist tumor on my right lung, that they have decided to try and avoid surgery and treat with I matinib . Curious as to why Imatinib is not an option. Once again hope if you are getting this message that you are doing well and may God bless you and those around you

Hello, recently diagnosed here in the United States with a almost nine center meter tumor on my right lung has been eating at my rib cage. this is second time for me the last one was in my stomach and esophagus which they removed most of my stomach and the esophagus valve. question is if there is anyone out there is that my Doctor wants to have me stay on the Drug imatinib and avoid surgery . Wondering if anyone has a opinion as to if this is something they have gone thru or not. Hope everyone out there is good and has a blessed Easter.

Thank you for this video..

My dad recently got a partial gastrectomy. He has stomach cancer. Part of his stomach about ⅞ of it was removed. He's having the side effects . Lost so much weight, he has occasional hiccups, he's mostly always fatigued.

I just had stomach (wedge) resection surgery for GIST on Feb 1 . My emotions are all over post op.. thanks for sharing your experience. Prayers 🙏

I am new to having a gist I found this very helpful thank you Ken

Awwwww, you're wonderful!! I had small bowel gist 9cm tumour resected in June 2021. It is so great to meet you through your video here. Thank you for sharing your story. 💜

Thanks for sharing, My mom is on this, I been doing research for her, she is needing a lesser dose I think

Also...RE: The lady who.went to her doctor with menopausal symptoms. Me too! I'm SDH deficient. Is there perhaps a link between hormonal fluctuations and development of SDH deficient GIST?

Re:The GP video. It would be useful if GIST patients were reminded to email this video to their GPs. This can be done through social media reminders.

I found that presentation interesting and clear thankyou. I'm one of the patients with liver metastases from SDH deficient GIST. Dr Buluso is managing my treatment and also Dr Roji at QEB. I understand Dr Ali, that I have been referred to you for SIRT treatment. This was in August and I haven't heard anything. Do I assume (from your presentation) that this SIRT treatment is no longer available in the UK?

Hi how are you doing.i just started this med 2 weeks ago

Please, can anyone let me know if there is any clinical trial being carried out at this moment, which could become a new protocol against GIST. Thank you very much

Please, can anyone let me know if there is any clinical trial being carried out at this moment, which could become a new progocol against GIST. Thank you very much

Supporting my husband since March 2022, on mivest 400mg imatinib and after 3mths the 1st CT scan shows remarkable results, some disappeared, no new ones and shrinkage for the 2....praying for total recovery with Gods Grace 6mths PT scan. The side effetcs are being managed. So blessed to have this targetted therapy here in South Africa. Amazing support with GIST UK and GIST international support. Thank you all.

Hello.. after 2 years of not being able to swallow correctly I was diagnosed with Stomach Cancer. I have no tumors. My cancer attacked my stomach like a spider web instead and the docs thought it was achalasia. I am now on chemo and the stomach etc... will be removed this July. Do you feel satisfied when you eat, or is it like work?

Thank you i just had my stomach removed am struggling

May God bless you! Thank you for sharing your story. Enjoy your life to the fullest beautiful!!!🙏🙏💕🌺

Prayers you feel well today and doing well also.

kzbin.info/www/bejne/Y5alf6aQrsmhrM0

How are you doing?

Prayers. Bless you for information to help others.