Friends of Max Virtual Support Group Meeting – Tamil Nadu
The Max Foundation along with Friends of Max held their Tamil Nadu patient support group meeting virtually on October 31, 2020. Eminent Doctors, Dr D Biswajit, Dr Ganapathy Ramanan, Dr Jose M. Easow, Dr Krishnakumar Rathnam, Dr P Guhan, Dr Prasanth Ganesan, Dr Rejiv Rajendranathand Dr Revathi Raj participated in the meeting. The event started with a welcome speech, followed by general advice from doctors to CML survivors and caregivers.
The wonderful panel of doctors also answered all the questions posted in the meeting by the participants.
General advices given by doctors were:
Dr. Ganapathy Ramanan, Stressed on the importance of the precautions to be carried out during the COVID times. The three simple parameters to be followed are Wear a Mask, Wash hands regularly and Maintain Social Distancing.
Dr. Jose, Emphasised the patients to use Telecommunication and Phone Consultations during this pandemic times. But in need of an emergency patients are advised to go to the hospital.
Dr. Rajiv Rajendranath, Instructed the patients not to stop Glivec or treatment for CML, if diagnosed with COVID. Not to try TFR (Treatment Free Remission) during the COVID times, to avoid frequent hospital and clinic visits.
Dr. Revathi Raj, Paediatric Oncologist gave valuable information for children on CML treatment. Since there is evidence on Bone Growth affected in children on treatment, she advised intake of Calcium Supplements and Vitamin-D on the advice of the treating doctor. She also mentioned discussion on TFR starts with parents once the child is on treatment for more than 7 yrs and responding well.
Dr. Krishnakumar, answered a common question on Cramps experienced by most patients. Regular mild exercises and physical activity was advised. For patients experiencing Gastritis, intake of medicine at proper times can help. He also mentioned that some side effects are not related to the disease or medicine itself.
Dr. Prasanth, also emphasised the importance of following the precautions during this pandemic. For a question on intake of Ayurvedic Kashayams for COVID along with CML treatment? He stated that doctors are not aware of the implications these drugs have on Glivec, so patients were advised to take ayurvedic kashayams only if required.
Other questions that were addressed by the doctors:
Is CML hereditary? NO
Is treatment with Cord Blood possible? YES, it can be used from a matching donor for transplant purposes.
Do CML patients have to follow extra treatment options if diagnosed with COVID? NO, follow COVID treatment and do not stop Glivec or treatment for CML.
What is TFR, and what’s the criteria to qualify for TFR? TFR is treatment free remission. The patient must have been on the drug for a minimum of 5 years and it depends on the doctor’s advice to try TFR. The patient must be highly motivated, and should be ready to do frequent blood testing and BCR-ABL testing. It also depends on the psychological need of the patient to stop the treatment or need a drug holiday.
Is continuation of patients on Glivec 800mg dose safe? If the patient is prescribed 800mg, then it’s for a reason and it depends on the patient. There are trials on long term dose of 800mg and it’s safe.
Disadvantages of Glivec, It comes down to management of the side effects if any. If Gastritis, take medicine for it. Skin problems, Take appropriate precautions while sun exposure. Muscle Cramps, Gets better with supplements and exercises. Body Pains, take appropriate medicine prescribed by the doctor.
If the side effects affect the lifestyle of a patient, then please consult your oncologist for alternative drug treatment options.
We also had FOM volunteers share their stories and motivate the other patients and caregivers. Viji Amma also explained about Chai for Cancer, a fundraiser for CML patients.
The meeting was followed by Shalini from the Max team, she explained about the new program through which patients collect the medicines. Vote of thanks was delivered by Ashika from the Max team.
All the patients were very happy to interact with the MAX team and especially the everloving Viji Amma.
The very effective meeting extended for almost 3 hours with lots of useful information sharing and loads of happiness. It was yet another very successful patient support group meeting in this new normal through the virtual platform.
Archana Suresh- CCL- Tamil Nadu