Friends of Max – Pune Chapter – July 2007 Meet

Sep 5 2007
Reported by – Ashish Mahajan

{mosimage} Some ten days ago, I got a call from Shashikant regarding the ‘Friends of Max' get together on Saturday the 28th . For a moment, beautiful moments of the Mumbai, Bangalore and Hyderabad get togethers I had attended splashed in my memory. These meetings gave us a chance to meet our friends from different locations, cities, to come together, network, share our experiences and inspire everybody. We read each others’ e mails but wondered what our friends and their looked like. So this was the opportunity to meet everybody. I was overjoyed and became excited at another meeting in another city.. Sure, others too would have experienced same thing.
So, we had a wonderful get together of 'Friends of Max' from Pune-Mumbai on Saturday 28th Jul 2007. Moreover it was Viji ji’s (Amma) birthday and (as she said yesterday) it was a great birthday gift to her.

The event was organized at the Sahayadri Hospital between 2pm and 6pm. We didn't find it difficult to locate the venue for our event's board was placed right at the gate. Unlike typical Indians attending events according to IST (Indian Stretchable Time), we FOM were all there well before time and started networking instantly. The Seminar Hall of Sahayadri Hospital, Karve road was almost full. Max India team from Mumbai, Viji ji, Ayesha, Sharon, (we missed Ganesh) and FOM Core Group leaders Shashikant, Vinay and Abhishek were welcoming friends at the door, taking snaps with them and distributing 'Friends of Max' kit comprising the inspiring Book of Stories of some of our family members, notepad, key chains and pens…

Old friends had a chance to catch up each other, new ones getting to know each other and all of us sharing our experiences. The groups comprised of people ranging from old but inspiring members to the very young and charming ones like Abhishek and Sonya.

Then the much awaited event started. Shashikant welcomed everyone and then on the screen, Ayeshah’s presentation began giving us the history of dear Max, 'Friends of Max' chapters in various cities, Max India offices, earlier get togethers and slides of groups from all around the world.

Then Sharon, after giving a brief introduction about the event requested those willing to share their experiences with others on stage. Many showed interest and soon joined her up front. First, Shashikant shared his experiences and views. He said he was very happy and proud to organize such a wonderful event. Pramod John's who came from Mumbai gave us all a very inspiring talk. He was diagnosed the same day his wife delivered their son who is now four years old . He encouraged everyone to live life with a positive attitude. By the way, he managed to speak in perfect Marathi!! l.Mr.Pinakin's (who is also our FOM from Mumbai) speech was very interesting & how can we forget our dearest, oldest FOM Mrs.Bhagirathi Tank who spoke very enthusiastically… there is a lot to learn from her. And the great mother of a SSC student … yes she has not yet told her daughter about her illness but encouraging her to live life to the fullest. There were different people with different stories, with different social backgrounds but Novartis and the Max Foundation is helping us all.

Then handsome Abhishek shared his experience. He is recently diagnosed but after finding this group has almost forgotten about having CML. Then beautiful charming Sonya shared her experience. CML hasn't stopped her from making a good career in fashion designing.

Then Ayeshah gave a presentation on how this foundation is functioning. It was great to hear Viji ji share her experiences with all her colleagues & family members. She shared some experiences of prior get together events. She told us about the Max Foundation as a whole – How it started, what is its mission and some details about GIPAP. It was good to know that so many people are currently being benefited. She told us about the courageous story of Max and how and why his proud parents set up this foundation.

Overall, for almost all of us buying Glivec was almost impossible, though some managed to buy for a brief period of time. Some like me were praying to get rid of pains of Interferon and ARA-C injections pains. And above all, everybody was praying to God to get back their life. Glivec promised all these things and fulfilled with (in one of our friend's words) very, very minor negligible side effects.

Then it was snacks time. It was only after Viji ji announced that it was time for a break that we realised it was well past 4:30 pm . The last 2-3 hours had gone by like a few minutes. We had hot Samosas and sweet burfi with a beautiful aerial view of Pune and swimming pools of the Deccan Gymkhana from the 7th floor meeting room. And then it was time for hot refreshing tea.

While we were all enjoying the tea, sweets and Samosas a middle aged couple who run a school came to join us. Both of them are taking treatment for malignancies but enjoying their life as they are very busy in the work of their school. I found out that the lovely lady was Gita ji who was also a CML survivor on Glivec.

After this, Dr. Sameer, Dr Apte’s team member in Sahayadri Hospital who has good experience in CML and who has worked under renowned physicians from CMC hospital at Vellore, was kind enough to answer all our members’ queries in great detail. Some asked about the side effects, some about possible life expectancy. Dr Sameer told us “You have got your life back!! Live it to the fullest!! Some of us wanted to know if we had to take the magic pills for our entire life and the answer was yes. “Considering the fact that it's giving life, taking pill a day is negligible, isn't it!” One of our family members, Frank was unnecessarily but rightly worried about his daughter's marriage since his wife is having CML. First nobody understood the question. This itself indicates that the CML which once was considered deadly is now merely like diabetes or hypertension. So after some probing we came to know that Frank was worried whether his wife having CML will create any issue in his daughter's marriage. Answer was straight and simple. No way should this have any impact on such decisions. Dr Sameer asked Frank to EDUCATE PEOLPLE that CML is now a chronic condition that can be managed. Some asked, they have preserved their baby's stem cells at the time of birth. Pray to God this won't happen, but in the worst case, if their baby is later diagnosed with CML, will the preserved stem cells play any roles to cure baby. The answer was yes, and that there are trials going on around the world regarding this. Some said they are becoming fair and will they become totally white in near future. Dr. Sameer, smiling, said no. Some asked, whether after diagnosing should they get married. Dr Sameer answered that many people now with CML were able to lead as normal a life as possible. It was important to let the prospective partner and family know about the diagnosis. However regarding having children he told us that there are medical records that babies of female patients taking pills during pregnancy had some birth defects.

Dr. Sameer spoke about the days of using traditional CML medication and how it was hopeless to treat patients. They used to feel very sad when some patients used to ask about their life expectancy. Then with a smile, he said that now we can tell our patients that they can lead a normal life. That boosts spirit and enthusiasm of Doctors as well. He also gave additional valuable information like some equally effective new drugs in the pipeline. He spoke of Glivec’s proven experience of more than 5 years. He also said that earlier their treatment protocol was that if somebody is diagnosed with CML, they had limited options and even BMT was expensive let alone finding a match .Now in such cases they happily and confidently prescribe Glivec being donated by Novartis.

. Overall, we all are grateful to Novartis and the Max Foundation working hard to make sure everybody gets Glivec on time and to Max India for starting a yahoo group of wonderful members. We are thankful to Novartis administration, researchers for giving us life back!!

Re. the event, we are thankful to Max India Team, event organizer Shashikant ji , Dr. Sameer from Sahayadri hospital and the co-operating staff of Sahayadri Hospital.

In the end, Viji ji announced, to our joy, that All India 'Friends of Max' get together will be held in Bangalore on January 26th 2008 .. Many of us though living far away in Pune and Mumbai showed interest in attending the grand event.

Overall, it was a wonderful, memorable and inspiring event!!

Love to all,

Ashish, Anagha, Amisha

Note: Ashish and Anagha are the proud parents of beautiful 11 month old Amisha who was the life and soul of the meeting charming everyone with her cherubic smiles. Anagha herself is a wonderful testimony to the spirit and courage of a woman who has journeyed through the experience of a breast malignancy with head held high and is now the beautiful partner of our dear Ashish.