Friends of Max – Hyderabad Chapter August 2007

Sep 5 2007
Reported by – Sailaja

{mosimage} Dear Friends of Max,

What a day it was on Sunday, the 19th of August!
Friends of Max Hyderabad were proud to organize its fourth meeting of GIPAP members. It was a pleasantmorning, the sky was somewhat overcast with a few monsoon showers every now and then; but overall a pleasant day for the meeting. The auditorium, courtesy Medwin Hospitals, was excellent and big enough to accommodate the 140 odd people who had gathered for the meeting. The first to arrive were the core group members: Dr. Raghu, Pramod, Manjula (from Chennai), myself, Usha, Adishri, Parveen, her son Armaan, Ratika, her brother Abhaas and parents, and of course Viji and Beena.

As a majority of us were meeting Beena Narayanan for the very first time, we could put a face to the name we had always been reading about. She is a very warm and compassionate lady just like the rest of the Max team, and we jelled very quickly with her. Slowly one by one people started arriving; whereas Beena and Abhaas were busy registering their names, handing out FOM goodie bags, Viji received each and every one with a warm welcome.There were many first timers, and some seemed to have a puzzled look on their face wondering what this meeting was all about? By the time the doctors also joined us by 11am; it was time to get the program underway.

Having celebrated our Independence Day just last week, the program was very appropriately started off with the National Anthem – Viji played the latest one (from her lap-top) composed by A R Rahman. Dr. Raghu gave the welcome message in English, followed by a brief Telugu version by Adishri. Next, Viji welcomed the audience, giving a small presentation on GIPAP, the story of Max and how TMF was formed, the role of Max India Team and Novartis in GIPAP. Pictures of the Max team and various FOM meetings held in different cities were shown in between.

This was followed by an interactive Q & A session with the doctors – Dr.Prasad from Apollo Hospitals, Dr.Sadashiva & Dr.Norman from NIMS and Dr.Sudha from MNJ Cancer Institute, were kind enough to spare their valuable time for us on a Sunday, and answer all the questions very patiently. There were a wide range of questions (I am not getting into all the details) related to side-effects management – myelosupression, bone-pain, muscle cramps, nausea, edema, skin rashes, and most of the regular problems faced on Glivec.Dr.Prasad stressed that most side-effects could be effectively controlled by medication, and there are some which we may just have to put up with, but the bottom-line is that one should always stick to the prescribed dosage of Glivec in order to maintain optimum response. All the doctors emphasized on the importance of doing regular blood counts and periodic monitoring of cytogenetic response as and when recommended by the treating doctor.

We then had patient testimonials session – young Abhishek talked as to how he was still coming to terms with his recent diagnosis, Ratika shared her story and how she has taken it positively in her life, Armaan narrated his mother Parveen’s diagnosis and how devastated they felt in the beginning. However, it was new member Samantha Reddy’s story which really touched a chord with everyone. She is a long time CML survivor, diagnosed way back in 1995 when the only treatment options were Interferon or BMT. She recounted how she was diagnosed at the age of 25 during her second pregnancy, and one could feel the emotional strain in her voice as she remembered the nightmarish time she had been thru on Interferon for 6 long years! Incidentally she had also participated in the Glivec trials in the US. Despite all that she has been through she has not let CML get the better of her. Instead she is very actively connected with Jagruthi in conducting cancer awareness workshops especially for women, apart from also being a full-time entrepreneur. She is truly an inspiration to all of us! Viji encouraged all those who could to join the Yahoo GIPAP e-mail group, a forum where everyone can share and learn, exchange information, and also cheer up with lighter moments.

At about one in the afternoon it was time for lunch. It was during this time that I (we) finally got to meet our mystery woman Krithika 😉 for the very first time – in spite of her being posted in Hyderabad for over an year now! We have been internet friends for over four years now and it was a wonderful feeling to be meeting her in person…

Dr. Raghunadharao, Dr. Senthil Rajjappa, Dr. Lalit Varadpande- the team from NIMS joined us to lend their support during the post-lunch session when Viji conducted the Volunteer training workshop, attended by 30 members. Viji made it a lively and interactive session while outlining the objectives of volunteer programs. Dr. Raghunadharao joined in by sharing little anecdotes of his experiences with patients and reiterated the need for volunteers as most of his patients were very poor farmers and casual laborers hailing from remote villages, who were uneducated and who could not even afford to make the trip to collect their medicines. At the end of the 3 hour session, quite a few of us were motivated enough to volunteer for some good cause or the other, at least to make a beginning if only in a small way…

It was 5.30pm when the day-long program came to an end. We were all animated and good-naturedly joked around throughout the entire day. All in all it was a great day when we could all have some good time together. As always, Viji, our official photographer, was busy clicking candid pictures of everyone all thru the day. As all of us bade goodbyes, she made it a point to give a warm hug to each one of us. She said she looked forward to seeing us all at the Bangalore meet in Jan’08. Viji, I know you would hang me by the throat for this, but the tattoo on your back was the center of attraction ;-). I wouldn’t be surprised if it becomes the talk of the town! (LOL)

Concluding note: A very special Thank you to Mr.Bhagwan Das (Abhishek’s MD) for securing the venue free of cost and also for sponsoring the Lunch. We are also grateful to Medwin Hospitals and its staff for their complete cooperation in making this program a huge success. Finally a BIG BIG THANKS from the bottom of our hearts to PRAMOD, without whose tireless efforts all this would not have been possible! So Pramod, you are indeed our Superman!

Three Cheers to Friends of Max Hyderabad!!!