First CML & GIST Patient Support Group Meeting for @Nagpur- 19th Oct’2019
October 19, 2019 was a memorable day for Nagpur in two ways. It was the birthday of Max whose legacy has benefited hundreds of survivors to live their life with hope and dignity. Further, The Max Foundation had organized the first patient group support meeting in the city.
As the day dawned after a heavy downpour on the day before, there was hustle and bustle in the venue, an IMA Hall (Indian Medical Association) hall at the centre of the city. Amma, Viji Venkatesh and other volunteers had arrived at the venue and were ready to receive delegates from 8 AM. The registration counter that was ready was manned most of the time by Amma and Mrs Tiwari who had come all the way from Bhopal with Shri J P Tiwari, Shri Nitin Srivastava to attend and assist the meeting. The Max Representative from Bhopal, Ms Anshika Tandon had also come and was fine tuning the arrangements.
As customary in FOM meetings, delicious breakfast was arranged and patients after registration networked themselves. The session started with the National Anthem followed by a Welcome Address by Ms Anshika Tandon.
Amma thereafter gave a comprehensive talk on The Max Foundation from its advent and how it has grown over the years and impacted the lives of those inflicted with CML & GIST. She also touched upon the aspect of Compliance which is so very important in the prolonged treatment process for patients. Among other things, she highlighted the need to take medicine in the prescribed dosage without fail and see the doctor on the schedules advised.
Thereafter I spoke on ‘ Friends of Max ‘ and its role, emphasizing on how a CML or GIST Survivor could benefit from learning and sharing the experiences of others who are battling this disease. The different facilities in the form of support and assistance were touched alongside the fund-raising initiatives of Friends of Max. Amma supplemented by putting into perspective the ‘Chai for Cancer’ initiative, on how it was conceptualized and has become a credible fund raiser for ‘Friends of Max’. She went on to elaborate that it was suddenly conceived when she was having tea with some patients and she hosted an event at her house for the first time. A modest 86 guests had attended and she could collect Rs 1.25 Lakhs for the cause. The initiative has thereafter flourished with many of the Friends of Max too organising the event once every year. She went on to say that funds to the tune of Rs 55 Lakhs were raised last year in the process.
The hallmark of a Patient Group Meeting with the doctors. This is what the patients who come from far and wide eagerly wait for, to clear their doubts. Normally, when the patient sees their respective doctors, they do not get ample time to ask all their questions or doubts that they may have. At times they are very shy or may have something holding back to to ask questions. Apart from Dr A.K. Ganju, three leading doctors viz. Dr Smita Gupte, Dr Amol Dongre and Dr Rahul Naikwade from Nagpur had spared their valuable time for the session.
There were a plethora of questions about the dosage of the drug, its side effects, stopping the drug during pregnancy, infant feeding etc., the periodicity to doing RQ-PCR, the interpretation of bcr-abl results , the mind set and will power that needs to be maintained during the treatment, the rationale at going for a stem cell (bone marrow) transplant etc.
The doctor’s lucidly put forth their answers/suggestions which are summarised herewith:
- That the drug always needs to be taken in the dosage prescribed by the physician.
- That the drug should never be discontinued temporarily or permanently without the consent of the treating doctor.
- Customarily the drug would be need to be suspended temporarily during pregnancy and some specific situations but with express consent of the physician.
- Side effects can be dealt with by treating oneself with permitted therapies.
- The RQ PCR levels need to be monitored at intervals as specified. They are monitored once in six months for a normal case. For an aberrational case, where there has been increase in levels they need to be monitored more frequently at once in three months.
- There was an emphasis by all the doctors in the panel that the patient should always have a positive mindset which is very essential for the effectiveness of the treatment.
Dr A.K.Ganju very candidly went on to explain the gathering, on how CML occurs when two chromosome viz. No 9 and No 22 fuse and produce immature cells in the bone marrow. After proliferating at a molecular level, such cells spill out into the blood disrupting the composition of the WBC, RBC and Platelets. He also touched upon the different stages viz., chronic and acute and the different treatment to CML.
Shri J.P.Tiwari delivered a formal vote of thanks. He conveyed that The Max Foundation is beholden to Dr Ganju for his wholehearted support throughout the planning stage and for spending the whole day with the meeting. The meeting could happen and was successful was largely due to his keen interest and dedicated efforts.
City Chapter Leaders Jp Tiwari and Nitin Srivastava thank you for coming all the way and leading like the champions you are.
The panel doctors, Dr Smita Gupte, Dr Amol Dongre and Dr Rahul Naikwade, were thanked for making it to the meeting and giving precious inputs during the Medical Q&A session.
Shri Tiwari also thanked all the FOM members who came from all parts of the region despite the inclement weather who could make it to the event and reaffirm to Maximise Life.
After the meeting was closed, a large cake was cut and distributed on the auspices of the birthday of Max which was followed by scrumptious lunch.
Report by Ramanathan Seshadari
FOM City Chapter Leader