CML & GIST Support Group Meeting, Mumbai -14th July 2019

CML & GIST Patient Support Group Meeting was held on 14th July 2019 at Tata Memorial Hospital, Mumbai. The agenda for meeting was as follows

200+ Patients, caregivers and volunteers attended the meeting from city of Mumbai.

Nirmesh presented on Friends of Max by starting with an ice breaker adding a Tag Line of Senior Citizens – Dada, Dadi, Seniors – Dads and Moms and youngsters who are in the program as FOM members  and serving CML & GIST community from 2005 onwards. In last 15 years the family has grown with the CML community working with the Goal “ Together we share and learn”

A complete introduction followed by activities done by FOM was given during the presentation and also reminded on the fund raising activities done by FOM like Membership drive and Chai for Cancer.

It followed with introduction of Core team members from City of Mumbai who gave a brief introduction along with the Motto of their life followed by a photo session.

The Vision of Max ” Live with Dignity and Hope” resonated in the motto shared by all the core city chapter leaders.

Q&A session

The session was Chaired by Dr Suresh Advani, Dr. Banavali and Ms Viji from The Max Foundation.

Summary from the Q&A session

Doctors affirmed that for CML and GIST the treatment has progressed for last 20 years along with a very good quality of life and there are several reports published affirming that target therapy has satisfactory results however reminded all that the tablet to be taken on time and strict compliance to be adhered on this along with testing of BCR ABL.

For GIST patients – On conducting of PET Scan, it is advised to be done at time of diagnosis and post treatment not a mandate if the reports are satisfactory.

Regarding Vitamin B12 deficiency, there are reports showing that this can be a potential side effect but not for all patients however if found then a supplement can be taken with consultation of the treating doctor.

A regular health regime of Yoga, Meditation and exercise is advised to improve the quality of life of the patients .

On general advise to undergo any specific surgery etc, it is recommended that the treating doctor be appraised of the condition of CML or GIST and take necessary advice from the Oncologist and then proceed with surgery

The Panel doctors reminded to all that in eventuality for any normal person also all mandatory tests are to be done before conducting any surgery and same is followed for CML and GIST Patients too. But a line of information on going treatment is to be cited clearly before any surgery. During surgery based on the outcome of the treatment Glivec may or may not be stopped and will be decided as per the need

CML is not a contagious disease and does not spread like a Viral Disease. This information was shared by the panel of doctors

On specific patient centric question like Hb being low and on Pediatric dosage vs treatment, these can be considered with the treating doctor as many associated reports and status has to be reviewed on case to case basis.

Water fluid retention is a side effect and it can be seen in many patients but there is no cause of any concerns. As the data of 20 years of treatment show that there is no major side effect. Panelists advised patients to manage the side effects

On Fluid retention which is due to side effect of Glivec, Panel of Doctors recommended to reduce the intake of Salt which will support in reducing the fluids in body.

On Voluntary donation of Blood patients of CML and GIST cannot donate blood when they are on treatment and the Panel of Doctors advised that in case of any emergency there is a clear mandate declaration form where the patients has to be clearly tell about their history of disease which will ensure that they are not considered for donation. Patients are to declare that they are taking treatment which will ensure that they are screened and will not be eligible to take part in Blood Donation

Can CML lead to any other cancer – No evident data is available to prove this.

Education on Do’s and Don’ts from Social Media – Example intake of sugar can add to multiplication of cancer cells. These are “MYTHS”. Panel of Doctors requested all patients to refrain from such message and clarify with the treating doctors on the facts.

Panel of Doctors advised that CML and GIST treatment protocols are different and the manifestation of disease is completely different. It is recommended to have separate sessions thereby avoid any confusions to the patients.

Nausea is a side effect. This is a common side effect seen in patients. Patient Testimonials in the meet recommended on how to take the tablets thereby avoid Nausea. For Example – it is recommended to have first meal (example one roti) and then take the medicine and then complete the meal. This causes the medicine to slowly digest along with the food thereby avoid nausea.

Another testimonial said that when a gap is there before the meal and taking medicine, the patients followed to have some light food before taking the tablet which facilitated in reducing the nausea.

Patients sought on how education to the General Practitioners can be given on CML and GIST patients protocol as they always seek a letter in confirmation from the treating oncologist for prescribing any medicine. The panel of doctors advised all patients that the subject is vast and doctors cannot be given any special education as there are many forms of Cancers. It is recommended to have joint consultation both with treating Oncologist and General Practitioner or family doctor thereby minimize the gaps in understanding

GIST Awareness Day

Post the Q&A session, Ms Viji Venkatesh introduced the audience on GIST Awareness Day which was followed by a Audio Video presentation on GIST Awareness day which received a thunderous applause

Patient testimonials was presented by both CML and GIST Patients thereby continued the theme of Friends of Max – Together we share and Learn.

This was followed by a Cake Cutting Ceremony by GIST Patients along with Max Foundation team.

Chai For Cancer Adda was also held during the Meeting and there was a good response by the patients, caregivers and participants for this adda.

The meeting concluded with a Sumptuous Lunch.

Report by Parameshwaran Subramanyam

FOM City Chapter Leader, Bangalore