A (hidden) Disaster in the making

To keep Mom’s Multiple Myeloma under Remission, we obediently, as per H-2’s advice given in the month December 2012, called that Pharma dealer up (whose number he had scribbled on mom’s prescription) and every month ever since, my mother invested in 30 Tablets of 10mg Lenalidomide. I learnt during that period through my acquaintances about Patients who were on Thalidomide10mg instead; I thought to myself may be that is so because Thalidomide is a bit inexpensive in comparison to Lenalidomide; and my stupid brain also interpreted that “may be the expensive one is more effective in keeping my Mom’s Multiple Myeloma under remission”.

How I wish I had read the information leaflet for Lenalidomide with a magnifying lens, how I wish that I had not turned complacent….for exactly about two years later on 2^nd December 2014, much to my shock and horror I leant that my mother has “Acute Myeloid Leukemia or AML”, possibly a side effect of that daily intake of Lenalidomide, which was indeed mentioned on the Information Insert of that tablet, which I had failed to read!

I kicked myself hard knowing this and I now knew as well, that may be this was H-2’s way of earning the many lakhs that he didn’t get out of us after we had refused the Bone Marrow Transplant to him on that day in 2012.

How I wish I had instead insisted that he put Mom on Thalidomide. Thalidomide causes sleepiness and constipation as its major side effects, but is a safer drug in comparison I believe; as two of my acquaintances whose known ones have been on Thalidomide for years now are still doing well.

Dateline 2^nd December 2014: There was no running away yet again, the damage had been done and we had a price to pay for it yet again. If getting Multiple myeloma treated was ‘bad’ then Mom and my battle during Mom’s treatment of AML was nothing but the ‘worst’. How she bravely fought AML post 2^nd December 2014 and our very sad experiences of dealing and interacting with Oncologists at various Hospitals in Delhi thereafter is a story for another day, which I will also hopefully pen down someday.

Until then, on a parting note, I hope the experiences and timelines shared in this Booklet while I tried to get my mother treated for Multiple Myeloma, will benefit you as a patient and/or a caretaker to remain informed and vigilant about medical procedures, medicines, treatments and all of their side effects; do read all about the medications being prescribed over trusted websites on the internet, save the inserts/leaflets you find in the medicine box and scan through the benefits and side effects of that particular medicine with reference to the health condition of your loved one. All of the above, coupled with the understanding of the fact that Doctors are not Gods and Hospitals are not heavens; there exists a huge nexus out there that is ready to cash in on our fear and ignorance. It is up to us to not be stupid, for it is the life and money of our loved ones that is at stake.

God bless you all with good health and peace for good health is God’s greatest gift.