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by Dr Nikhil Guhagarkar

 Dr Nikhil Guhagarkar, Volunteer and GIST Advocate for Friends of Max (the charitable Trust and Support Group to The Max Foundation in India), was accompanied by Viji Venkatesh, Region Head – The Max Foundation India & South Asia, at the 3-day New Horizons GIST 2018 Meet in Vienna (Austria) 5-7 Sept 2018. New Horizons GIST brings together global GIST delegates every year to discuss “critical information about GIST that impacts the global GIST patient and medical communities”.

The 2018 New Horizons GIST meeting was held from 5-7 September 2018 in Vienna, Austria.

Delegates at NEW HORIZONS GIST 2018 with Dr Guhagarkar (standing, last row 6th from left) and Viji Venkatesh (seated foreground, left)

It was a proud moment to represent Friends of Max at this prestigious event.

Accompanying me from India was Viji Venkatesh, chief of south east Asia for The Max Foundation.

NH GIST is an annual conference for GIST advocates from around the world who interact with GIST specialist doctors to understand the latest in GIST treatment and research.

Amy Bruno-Lindner from Austria and David Josephy welcomed the delegates to the conference.

In the first topic of Challenges and open questions in GIST treatment from the patient perspective we had 4 speakers.

Norman Scherzer from LRG USA spoke on ‘Localised disease and adjuvant treatment’.

 Duration of adjuvant therapy ranges from 3 to 5 years arerarely even for lifetime, the dosage recommendation based on LRG survey was 600mg for Exon11 and 800 mg for Exon 9. Dosage and duration depends on risk status evaluation. Side effects for long term medication included Kidney disease which was related to the contrast used during CT scans, lowering the number of CT scans a year reduced the risk of kidney disease.  In the Global access to Glivec there was a wide range in the cost of the drug worldwide. Generic drugs can never be the same asthe original brand as US laws says that Generic drugs should have 85% samecomposition as the original drug, but the rest 15% can have varied compositionand hence efficacy of such drugs is a question mark. US insurance does not allow coverage of Generic drugs.

David Josephy from LRG Canada talked on ‘Metastatic disease’.

He emphasised the need for mutational analysis, also withmore mutational targets covered by newer drugs like BLU 285 and DC 2668 shouldthese drugs be used as the first line of drugs for GIST? Whenever imatinibresistance develops then newer drugs should be tried. For long term side effects of Glivec it is important to understand the same with the CML group.There is a role of being aggressive in surgical treatment of GIST by RFA,Chemoembolization etc.

Markus Wartenberg from SPAEN Germany talked about ‘Progressive disease’

He talked about GIST as a sarcoma and what is diseaseprogression. Progression is further divided into Local and systemic and also into true and false progression (liquefaction of centre of a large lesion).

In a progressive disease it is important to verify true progression by a GIST specialist radiologist, see about drug compliance, drug holiday, check histology, check for complimentary therapy like herbs etc.

It is important not to switch medicines immediately, do individual dosing, see if qualifying for a new drug trial. If Local progression do surgery to remove it for progressive treatment do RFA.

There is a role of Liquid biopsy to pick up the lesions early before it is visible on CT scans so that treatment can be initiated.

The drug companies also have a ethical responsibility to provide the drug for support programs.

Jayne Bressington from GIST support UK talked on ‘Wild type and Paediatric GIST’

Wild type encounters for 15% of all GIST, NIH and PAWS GIST clinic specialise in the treatment of it. NIH, PAWS GIST and SDH consortium is doing research on it. It is challenging to treat as very few patients and researcher are there. There are few people doing Mutational analysis to identify the disease.

Dr Bernadette from Austria talked about ‘The Role of Pathology in GIST’

Her talk included various pathology techniques used for GISTdiagnosis namely Histopathology, Immunohistochemistry and the importance of the experienced pathologist to pickup the right tissue sample when the whole organis presented for biopsy. Identifying the correct morphology is important for histopathologyrepresentation.

It is important to do a proper differential diagnosis ofGIST as various other cancers may look similar in presentation. Role of Mutation alanalysis is very important to the diagnosis and prognosis of GIST.

It is important to do Risk Classification including heat contour maps for prediction of treatment. She talked about molecular changes in the tissues on TKI therapy. Pathologist are an important part of integrated GIST team of doctors.

Dr Ramesh Bulusu from UK talked on “rare and very rare type of GIST”.

He emphasised the importance of not calling Wild type GISTbut as SDH deficient GIST or NF1 related GIST. He is associated with NIH clinicand PAWS GIST clinic which does Tissue bank, GIST registry, better understanding of biology and targets, active engagement with pharma, regional and national cooperation.

Linsitinib is being used for wild type cases, it is in trial at 9 months 45% cases had benefit.

Vandetanib trials are also on.

DCC-2618 trials for metastatic GIST are on.

In Immune-therapy PD-L1 blockers are being tested

Dr Patrick Schoffski from Belgium talked on “New GIST treatments available”.

BLU-285 is a very promising drug undergoing trials.                                             It is more selective and less toxic, at a dose of 300 mg/day 67% of the patients benefitted.

DCC-2618 at 150mg 4 times a day was also a promisingdrug, Alopecia was seen in 40% of patients. It is known to interact withPantaprazole.  Glivec also interacts withproton pump inhibitors. Hence proton pump inhibitors should be avoided inTKI’s.

Arman Smakic from Mitigate project gave an update on the project.

New PET-CT tracer GA-Neobomb1 injection used during the PET scan acts as diagnostic and therapeutic role. Areas highlighted in the scan on which RFA, local surgery or radiation is done.

Norman Scherzer from LRG talked about “Real world evidence in GIST”

Talked about the discovery of Glivec and the formation ofLRG, which with help of internet created a international GIST community and LRGregistry was formed. Tissue bank was again developed for GIST research,the registry and the bank helped in real world evidence and research for GIST.1800 patients are on LRG registry, 778 tissue samples are present from 88 countries. Real world evidence helps improve treatment and better life quality for the patients. It also helps in research for new drug development. It also gives us data on efficacy of clinical trials. Side Eq helps patients monitor their side effects better and improves compliance. Paediatric and SDH deficient consortium is also making research better.

Denisse Montoya from LRG talked about “LRG Registry”

Patient registry helps in real world evidence, is a powerful tool to assess course of disease, helps in understanding variations in treatments and outcomes. It has helps develop the tissue bank for research.

Rodrigo Salas from Mexico talked on creating a specific GIST registry for south America. It helps in understanding the needs of GIST patients, translating data to health authorities, doctors and patients via publications and presentations.

It helps patients to influence health policies, and creating newer drug trials. Total number of patients enrolled were 421.

Gerard Oortmerssen from the Netherlands talked on status of data projects.

Markus Wartenberg from Germany talked about “GIST and Sarcomas in Germany”.

Sarcomas are rare, difficult to diagnose and treat, they areunderfunded in the healthcare system. Hence a patient organisation helps inInformation and support, advocacy and cooperation. Das Lebenhaus founded in 2003 supportsSarcoma, GIST and Kidney cancer patients till now, hence forth it will be onlyfor Kidney cancer patients. For Sarcoma and GIST patients a new organisation isbeing formed called the Sarkome Deutsche Sarkom Stiftung. The mission is innovative research, high quality diagnosis and treatment by multidisciplinary sarcoma team.

Viji Venkatesh Region Head (India & South Asia) The Max Foundation talked about “Challenges in India”

The Max Foundation deals with two rare, life-long cancers CML and GIST, whichthough are very different cancers are bound by the common the drug Imatinib.GIST patient support meetings started to provide care and support to GISTpatients. These meetings started in 2012 in Tata hospital Mumbai are now alsoconducted in Delhi, Bangalore, Chennai, Hyderabad, Kochi and Kolkota.  These meetings are a safe platform forpatients to interact with Doctors to answer their questions. Patientinformation booklets are provided in regional languages for betterunderstanding GIST. Different therapies are done in the interest of patientslike Music therapy, Drama Therapy, Art therapy, Quiz show, Yoga session,Testimonials. GIST awareness day is celebrated with patient being empoweredwith information and confidence. They have an extended family in FOM and abetter quality of Life.

I (Dr Nikhil Guhagarkar) presented on Friends of Max and GIST awareness.

I talked on the role of FOM to create a nationwide network to help and support patients with GIST and CML. Meeting with Pat CEO Max foundation with the Indian city chapter leaders to explain about the transition of GIPAP to Max access solutions was explained. Chai for cancer an unique program for fund raising and awareness was highlighted. FOM newsletters for updating on the latest information and its distribution was presented. PAN India GIST meetings with their tremendous reach and a unique interaction between patients and doctors along with various therapy sessions were showcased. GIST awareness day celebrations from 2014 were shown and the important role FOM has done to highlight and create awareness of the disease were shown.

Yoshihiro Takanishi from Japan talked about GISTERS in Japan

Their organisation was started in 2002, in 2003 they conducted signature activities to approve use of Glivec for GIST. 2007 they did a similar signature campaign for approving Sutent for GIST. 2010 they started patient study sessions. 2013 they applied for approval of Stivarga for GIST. Their webpage is Various fun activities like song and music are conducted in their meetings, they are also trying hard for getting clinical trials in Japan for newer drugs like DCC 2618 and BLU 285. It was a first time we had representation from Japan.

Psycho-oncology session which was presented by Dr Elisabeth Andritsch.

A short talk on a patient perspective on coping with the GIST diagnosis was done by Kai and myself.

Dr Elisabeth gave a detailed presentation on the topic including the importance of Psycho-oncology during the treatment of cancers and various techniques used for the same. It was a first time in NH GIST meetings that this topic was selected. There were 2 parts in this namely Social (interaction with society) and Biological (response to medicines and side effects). It is important to analyse each patient so that they have a good quality of life. Proper monitoring of stress and combative therapies given for the same. Psycho-Oncology incorporates a range of stakeholders including:

Oncologists, GPs, Nurses, Psychologists, Psychiatrists, Socialworkers, Religious representatives, Volunteers, Carers, Support Groups/ PatientAdvocates. Each cancer patient has to be taken through these 3 steps- becominga patient, living with cancer and life beyond cancer. Psycho oncologist helpsin identifying and overcoming stress, depression, anxiety in patients.  She talked about a technique using a bag as an example wherein patients have to putin all positive thoughts into the bag like openness, smiles, hope, music, godetc and always carry that bag with them.                                                                                                                                                           Relaxation techniques, meditation and visualisation helps patients.               Exercise also is an important antidepressant.                                                      She gave any interesting exercise to counter depression: Diary of happiness

Reflecting at the end of the day

Write down 3 things which gave you a good feeling during the day and think about why these things you experienced as good

Sometimes it is helpful to readfrom your diary in front of others. One should find out their uniqueness anddissociate with the thought that they are cancer and substitute it with they have cancer.                                             Thus Psycho oncology should be part of a multi-disciplinary GIST team totake care of the patient enabling a favourable mental wellbeing to help thepatient through the up’s and down’s of the treatment journey.

Dr Sebastian Bauer oncologist from Germany spoke on “Current trial in GIST”  

Resistance to Imatinib is due toheterogeneity of KIT mutation, presence of KIT leads to progression of MicroGIST to Macro GIST. Loss of MAX, dystrophin leads to metastasis of GIST henceit is important to find blockers of these mechanisms. We should have Pan KITinhibitors to arrest the growth of GIST. Liquid biopsy monitoring is importantfor noting presence of active disease.  BLU 285 and DCC 2618 are the newpromising drugs for GIST with multiple KIT inhibitions. Considering theheterogeneity of KIT mutation a interesting question came up about having drugslike BLU 285 / DCC 2618 as the first line of treatment for GIST.

Dr Neeltje Steeghs from Netherlands talked on Current trends in GIST treatment.

She talked on Immune therapy as not very promising for GIST treatment. Emphasised on the checking the blood levels of Imatinib for suggesting the optimal dose of the drug. She talked on the upcoming field of Liquid biopsy for diagnostic and monitoring the disease. Treatment of wild type GIST can be done with Larotrectinib. CRENOLANIBIN has been found effective in D842V-POSITIVE GIST.


1.For wild type patients: do not forget to test for NTRK gene fusions &find atrial/treatment with a NTRK inhibitor (one example is Larotrectinib).

2. For patients with a PDGFRA D842V mutation: finding a trial with Cr enolanib orAvapritinib (BLU-285) could potentially increase PFS and OS.

3. For patients with KIT resistancemutations Avapritinib (BLU-285) has a worthwhile disease control rate of 70%after 3+ lines. The phase I dose expansion in 2L and the phase III study in 3rd line vs regorafenib are enrolling.

4. Forpatients with KIT resistance mutations DCC-2618 has a worthwhile diseasecontrole rate of 77 % after 3+ lines (150 pts) in Phase I. A phase III studyafter 3 lines (vs placebo) and a phase III studying second line (vs sunitinib)are enrolling (soon).

the “five rights” of medication use are:

the right patient, the right drug, the right time, the right dose, and the right route

Dr Thomas Brodowicz and Dr Peter Reichardt showed and talked on numerous cases of GIST as an interactive discussion. This included various diagnostic procedures like Endoscopic biopsy, Imaging. In treatment talked on neo adjuvant therapy for organ preservation. Imatinib and other newer drugs were discussed. In Poland and Belgium Mutational analysis report is needed for supply of Imatinib.


  • Proton pump inhibitors like Pantaprazol are to be avoided as they affect the absorption   of Glivec in the body hence one may have poor efficacy of Glivec or other TKI’s.
  • LRG recommend 600 mg as the minimal optimal dose of Glivec for exon 11and 800mg for exon 9
  • Kidney disease known to long term survivors is related to the use of contrast in the follow up CT scans.
  • Generic drugs have 85% same composition to the original drug, the rest 15% may affect the efficacy of the drug.
  • Tissue banks are important for the research of new drugs and the pattern of disease.
  • BLU-285 and DCC-2618 are very promising new drugs for GIST with multiple site binding proving effective against multiple mutations and the generally well tolerated drugs.
  • Liquid biopsy which is a non-invasive diagnostic test is being proven to be effective for diagnosis and management of GIST.
  • Psycho-Oncologist should be an integral part of a GIST team for stress and anxiety management of the patient.
  • Surgery  is the main treatment for GIST along with appropriate TKI’s drug therapy.
  • Progressive disease should be carefully diagnosed and monitored to understand true and false progression.
  • The drug companies also have a ethical responsibility to provide the drug for support programs

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