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.

Post-treatment niggles and Multiple Myeloma goes into remission

Since 9th December 2012, Mummy complained of pain and swelling in right knee and I took her to Orthopedic O-1’s clinic at Hospital No. 4 on the following day. O-1 asked Mom to just rest and recover, he was not interested in putting her on medication that day. He asked us to visit us next week if rest does not help mom recover.

On 10^th December 2012, H-2 had also asked us to visit him in his OPD at Hospital No. 4. After meeting O-1, we made our way upstairs to H-2’s clinic.

Since Mummy and I had categorically told H-2 the previous week and even that day, that we do not wish to undertake Bone Marrow Transplant, H-2 was visibly unhappy with us. In hindsight, I understood why that was so, BMT’s are big business these days, Hospitals and Doctors make many lakhs in profit by pushing patients to opt for it.

The reason we did not opt for it were far too many, cost of the therapy not being one of them.

Reluctantly and disgustingly, H-2 told Mom, “Now that you are not going for BMT, for maintaining Multiple Myeloma under remission, take this pill for the next two years, daily once”, and he scribbled the name of the pill and the number of the Pharma dealer from whom we could procure it on Mummy’s prescription for that day. The name of the pill was “Lenzest10mg” with the salt named “Lenalidomide”.

And, off the medicines he had started prior to beginning Mom’s 16 week course of medication, he asked us to stop taking the tablet named “Acyclovir”, as it was no longer required.

On 12^th December 2012, Mummy contracts Eye Infection and on 19^th December 2012, Viral Conjunctivitis was diagnosed in her Right Eye and she was advised to put Lubrox and Ciplox Eye Drops four times daily and take Vitamin C Tablets, once daily for the next 10 days and she recovered post that.

On 21^st December 2012, Bone Marrow Biopsy and Aspiration Tests were performed i.e. samples collected by H-2 on Mom by getting her to lie down on her stomach on the Bed at his private OPD Clinic itself. These tests were being done to confirm that Mummy’s Multiple Myeloma had gone into ‘Complete Remission’.

He charged us Rs.5000 in cash to conduct that test and we had to bring all syringes (big fat ones), local anaesthetics etc. for H-2 to perform the test; including his gloves, we got it all. He called for the lab attendants to get slides and sample collection tubes. The test were performed, my brave mom had borne the pain yet again and a thick bandage was put over the point in her back from where that thick Biopsy needle had made its way into her Bone Marrow that day. I was told by H-2 that I can remove that thick bandage a few days later when she feels better.

It was the month of December, a month where peak winter sets in in Delhi, any bone pain hurts more severely in winters and I could not imagine the pain Mummy was undergoing in those days.

Since 22^nd December 2012, Mummy experienced tenderness and pain in the back, exactly, in the region where her Bone Marrow Biopsy was performed, and later experiences pain in the left leg and knee region. I took her to O-1’s clinic on the morning of 25^th December 2012 and on his advice, she started taking Ultracet Tablets on an SOS basis (restricted to 1 or 2 pills daily) and RutoHeal Tablet twice daily for the next 10 days, which helped relieve her pain and make her feel better.

The Bone Marrow Biopsy and Aspirate Reports were collected by me from Hospital No. 4 on 31^st December 2012.The reports confirmed that my mom’s Multiple Myeloma is under ‘Complete Remission’, I breathed a sigh of relief and came home joyous. We decided to celebrate this piece of good news that had come to us as a tough year came to an end later that night…

We celebrated it the wrong way though, we consumed Palak-paneer i.e. cooked Indian vegetable dish of Spinach and Cheese.  She started experiencing gastric troubles post dinner that night of 31^st December 2012. After experiencing prolonged nausea and acidity. Mom finally vomits the Palak-paneer out and I then gave her Cintapro-the tablet GI-3 had explained to me to keep handy as it helps relieve gastric acidity. Mom feels better post vomiting and consuming Cintapro tablet, she sleeps fine that night and wakes up well on 1^st January 2013.

The New Year 2013 had begun well or so I hoped.