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Submitted by PatientsEngage on 11 November 2019

Parameswaran(Param), 51 is a CML (Chronic Myeloid Leukemia) survivor. He recounts his experience of battling the condition, going through a Bone Marrow Transplant and his journey to becoming a patient advocate.

I was diagnosed with Chronic Myeloid Leukemia (CML) in Feb 2004 and was on standard treatment till Oct 2006 I was givenThyrosine Kinase Inhibitor tablets which secures the disease to be in control. But I developed resistance and had to undergo a Bone Marrow Transplant in Nov 2006. It is now 13 years since the operation and I am disease free

When and how were you diagnosed?

In Feb 2004 as part of an annual routine check up I was diagnosed for Chronic Myeloid Leukaemia. The routine blood test is part of the annual medical check up at the place of my work. There were no symptoms at all and if not for the routine blood check up it would have gone unnoticed

Is there a history of any kind of cancer in your family?

No not at all. I am kind of the first to have this disease in my family

What was your initial reaction to the diagnosis?

Shock, and my career was at its peak then and I was handling critical projects. But I realized that my body is affected, not my mind and soul and that is where I found my wisdom and strength

Please describe your experience of managing the condition?

On initial diagnosis I decided along with my wife not to lose hope. Yes it was shocking to get a disease of this dimension and intensity but wisdom prevailed as basically am resilient with my emotion. I developed this strong hope and faith that my mind and soul do not have CML. That increased the confidence to fight this disease. Thereafter I was more blessed to see there are medicines to keep this disease under control which further enhanced the confidence to fight the disease . Along with the above I was introduced to patients having CML and their testimonials further strengthened my Hope and Faith on coping with the disease

How did you go about taking the decisions?

I followed the protocol recommended by the doctor. I did not want to go against any of the alternatives or other mode but followed the protocol

How were you responding to treatment?

Initial response was very good and I started to make very good progress to bring the disease under control. But unfortunately my body developed resistance to the drug which made me go to BMT, the only other possible treatment. 

What were some of the challenges you faced and what is your advice to patients who face similar challenges?

Cancer brings financial and emotional stress and fear for all those who get diagnosed. This is a vicious cycle and either all or one of them causes stress to patient and care givers. If you are trapped in this cycle, you will be fighting the battle on a losing ground. It is my submission that none of these can impact the patient and caregiver if we make up our mind to fight this disease. I would like to point out to patients and caregivers that the first three letters of Cancer are CAN. It clearly says we CAN. This will replace the fear in one and all, thereby providing the courage to cope

Second advice would be an early diagnosis. As we all have protocols on various tests to be done at specific ages, I recommend that we follow that advise and do the regular check up to secure all parameters are under control

Prevention is better than cure.

Have you learnt anything in managing your condition that you wish you knew before?

I have had to face stress at various levels in my life, both personally and professionally. This stress may have triggered some imbalance in my physical body leading to this predicament

What kind of specialists do you consult now and how often?

The initial consultation was with an oncologist, but I later moved to a Haemotologist. In the case of a leukaemia, it is always better to consult a Haemotologist

Are there myths regarding cancer that need to be busted?

Yes indeed

As said earlier the fear and taboo in society is immense. This can be removed through constant awareness programs. Also there is progress made in treatments that can provide best care to the diagnosed patients which can remove the myths shown in movies that the hero or heroine dies at the end from cancer. Death is preventable but it is the Myth that has to be removed

Have you had to make some changes to your lifestyle because of your condition?

The disease made me realize that I should make some changes in my lifestyle. I stopped taking alcohol, and Non Vegetarian food. +.I avoided late night partying as taking medication at the right time was more important.

Have you tried complementary medicine or therapies, like homeopathy or yoga?

I did try homeopathy for a while initially but it did not work. I eventually started physical exercises and Yoga/Meditation and have been practising it last 6 to 7 years. During treatment time I was focusing on maintaining a good work life balance

Has it been difficult emotionally to cope with your condition? Initially yes. But as I said earlier I am a resilient person and I handled it well. I am now a very strong patient advocate and represent India in CML forums and other blood disorder forums

I am also part of assisting mental health groups and associated awareness

How did you get into advocacy and how has it helped you?

As I said, at my initial diagnosis I was introduced to fellow CML patients who were on standard therapy and having a very good quality of life. Seeing them my confidence increased and I also took up the role of a lead patient advocate and became a dedicated volunteer to a CML NGO. I even represented India in in Global and Regional Hubs. Patient advocacy has been my dream and I strongly believe that this can make a difference to the patient community, caregivers, health care professionals and pharma companies

The emphasis on patient voice is what I like in advocacy. Patient advocacy has helped me on various fronts and I also provide support to many other fellow patients and their caregivers by sharing my testimony which has improved their quality of life as well.

How has your family supported you?

My family has been very very supportive. They were with me throughout which helped build my faith and trust.

Did you see a counselor for support? Were you offered counselling by doctor?

No not at all. This concept is not quite known in India. We now provide help and support from our NGO to the newly diagnosed patients.

What was the hardest part of the treatment? And what kept you going?

BMT and going through the process at each stage was life threatening. It was also a challenge to come out clean from the treatment. But my faith and trust helped me along.

One surprising aspect of my treatment was that my original blood group was B Negative and post transplant after some time it changed to B Positive

Is there any personal anecdote that you would like to share with us?

My testimony is titled as Celebrations of Cells – Hope, Faith and Trust

I had Hope in my own self and never felt hopeless. I realized that am chosen to have this, may be to make difference in many other lives with my testimonials and restore the lost smiles. I never felt Hopeless.

Faith. I have a strong Faith in the universal power that governs us all and am a strong God Fearing Person. I allowed the Faith to do the needful and never cursed my predicament

Trust – I had complete Trust in my family and in the doctors treating me, It is also not adviseable to Google about everything. It is more important to trust your inner circle of family and doctors treating you

HOPE –

HELP ONE PERSON EXCEL
HELP OTHER PEOPE EXCEL

 

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