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Virtual Patient Support Group Meeting for Andhra Pradesh & Telangana, 30th Jan 2021

Report by Sandhya Godey

The Patient Support Group Meeting for Telangana and Andhra Pradesh for 2021 took place virtually via a Zoom meeting on 30th January 2021. Over 175 participants – patients, care givers, doctors and the Max Foundation team took part in this meeting.

The meeting began with a formal welcome to all participants by Ms Sudha Samineni, Programme Officer- India & Nepal, The Max Foundation.

Ms Viji Venkatesh (Amma to the Max Foundation family) Region Head, India & South Asia, Max Foundation also expressed her happiness at meeting everyone, even if it was virtually. The program started with Ms Beena Narayanan, Programme Officer- India, Sri Lanka, Bangladesh, The Max Foundation introducing the esteemed panel of Doctors who made the time to join the meeting and address the concerns of the patients and care givers and also answer questions posed along various topics relating to treatment, COVID pandemic and other related areas of concern.

The doctors present spoke on the various aspects of the COVID situation and the best practices to follow for optimum results.

  1. Dr Raghunadharao Digumarti- Chief Medical Oncologist – KIMS, Visakhapatnam spoke first on the new COVID vaccines and need for all CML/GIST patients to take the vaccine at the first available opportunity. He also outlined the methods of manufacture of the different vaccines and advocated the use of the vaccines by patients. He did however mention that patients under the age of 16 years are not recommended to take the vaccine since even normal healthy individuals under the age of 16 years are not being administer the vaccine for now. Both COVISHIELD and COVAXIN are safe to use he added.
  2. Dr Raghunadharao also said that the use of masks, sanitisers and maintaining social distancing should be continued even after getting vaccinated since a person might be a carrier for a few months even after vaccination. The Vaccine may reach everyone only by May or June 2021 he said. Since studies on the efficacy of the vaccine are still in progress, safety precautions should continue until such time as the Government announces total freedom from the COVID infection and its spread.
  3. Dr Sadashivudu Gundeti – Medical Oncologist- NIMS, Hyderabad shared that patients who contracted COVID recovered like oter normal healthy people. He added that during COVID lockdowns Max Foundation and Novartis did their best not to disrupt supply of Glivec to patients to ensure compliance. Options for online prescriptions and Tele consultation were given. He added that the Government amended lockdown rules to allow Oncology OPD to work as usual. Despite some doctors contracting COVID, they overcame their fears and continued treatments.
  4. Dr M.V.T. Krishna Mohan- Medical Oncologist- Basavatarakam Indo American Cancer Hospital, Hyderabad clarified that since CML/ GIST patients have almost normal immunity, they have normal chances of contracting COVID and recover from it too. CML patients have no extra chance of complications. Immune suppressed patients like Thoracic cancers, active chemo patients, BMT patients may have more complications he added.
  5. Dr S.V.S.S. Prasad- Medical Oncologist- Apollo Health City, Hyderabad seconded the view of Dr Raghunadharao. He added that any patients having issues with travel can make tele consultation appointments and collect medicine with prescriptions sent over what app. 

Dr Krishna Mohan moderated the Q & A sessions. Questions were grouped along the following topics :

  1. COVID related :

    A) Anyone taking Glivec can take the COVIS vaccine.

    B)  Does GLIVEC have to be discontinued if patients wish to take vaccine – NO .

    C). Should GLIVEC be continued during COVID treatment?  YES , even during intensive care .

    D)  Astra Zeneca / Oxford vaccine is being made in India by Serum Institute – COVISHILED/ CIOVAXIN is same. Take any vaccine, but ensure the same vaccine is taken both times. 

    E)  Can a CML/GIST patient with allergies take vaccine? YES. All allergies should be reported immediately. Vaccine will be administered only by Govt team after full case history. All resuscitation apparatus in place where vaccines are given.

    F) Can a patient having COVID antibodies take vaccine or not ? — YES. Vaccine should be taken irrespective of antibodies presence.

QUESTIONS on SIDE EFFECTS

  1. Muscle cramps and joint pain due to GLIVEC – usually these symptoms are short lived for a few months. Generic GLIVEC may also show some symptoms. Not all symptoms are due to GLIVEC. Vit D testing should be done in those with pains in joints and muscles and those above 50 years of age.
  2. Am on GLIVEC 400 – less appetite of late. —— please check liver enzymes and kidney tests.
  3. Leg swelling – could be other causes. Feet swelling may be due to Glivec. Joints and knees may have other causes. Ortho consultation may be done. Patients above 50 can request their medical oncologist to rule out cardiac and renal issues if any.
  4. Thinning of skin —- very common in long tern GLIVEC issue. Be careful not to injure skin. Oil/ Moisturizer will help.
  5. Low HB, weight loss etc may be checked for other medical issues.

STOPPING GLIVEC

  1. Stopping Glivec may be considered under medical advice by consulting oncologist ONLY. After stopping GLIVEC,  RT-PCR testing must be continued for alternate months for two years. About  120 medical oncologists in India are trying to make post Glivec testing free or low cost to enable stopping Glivec for more patents. 50% of patients DO NOT relapse after stopping GLIVEC.
  2. Patients on GIPAP are put on hold after they stop Glivec in case they re-lapse. Patients should sign up for regular post stoppage testing.
  3. Family planning –   males – need not stop before wife conceives. Females are recommended to stop before conceiving or in unplanned pregnancy to stop as soon as pregnancy is confirmed. Glivec is not recommended during  first trimester. Glivec is also not recommended when mother if breast feeding her child.

DASATINIB :  muscular pains – pain gels may help. Not special to Dasatinib.

SUPPLY :

  1. Consultations / appointments – talk with your doctor.  No cancer hospital was closed during lockdown.
  2. New outlets in Visakhapatnam and Vijayawada.  Patients to call Max Foundation who will coordinate with the new outlets. Change of doctors is a personal choice. Can talk to your current doctor and change if you want to.

3. Only Designated Apollo pharmacy will dispense Glivec.

4. Old invoices can be kept with patients. PLEASE COLLECT zero value invoice,

5. Empty strips and boxes not required any more.

GENERAL :

  1. Monitoring already answered above .
  2. What disclosure should be made to a dentist ? Inform dentist about CML/GIST,  get a CBC done and get your procedure done. No need to stop Glivec. Low platelets counts does not recommend dental procedures.
  3. Any special food restrictions while taking Glivec  ? some may face acidity issues , so less spicy food recommended. Other medical issues should follow those restrictions.
  4. Alcohol —— not recommended for any person.
  5. CML patients even males should reveal CML status to future life partners.

Dr Raghu, A Friends of Max team leader and a CML patient himself, shared his CML story in brief.  He took COVID vaccine with minimal side effects. Went back to regular work after a day.

Ms Sudha explained the new MAS PROGRAM and how its differed from the earlier program by sharing a slide show.

FOM Trustee Pramod Agarwal and City Chapter Leaders Sailaja Kosuri from Hyderabad and Sandhya Godey from Visakhapatnam shared their experiences during the pandemic and how the Friends of Max community with support of the Max Foundation overcame the battle against COVID. While Pramod urged more patients to join the FOM community, Sailaja shared her home remedies and tricks to evade COVID. Sandhya spoke on the importance of compliance as the single most important aspect in the struggle against CML.

Aashray Paul of Friends of Max shared social media handles of  FOM and urged everyone to follow the handle most used by them.

Vicky Vatnani from Hyderabad FOM explained the concept of Chai for Cancer. Amma too pitched in with her thoughts on this unique fund raising concept and urged people to raise their cups of chai to benefit more patients who need support.

Vote of thanks was proposed by Sailaja Kosuri.

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