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.

Week 9 to Week 16 - Account of Chemotherapy given for Multiple Myeloma

Week 9

10th October, 2012

Ninth Velcade injection Dose (2mg) administered through the Vein on Mummy’s hand using a 5ml syringe and a Scalp Vein Set followed by Dexamethasone 20mg tablets on 10^th and 11^th October 2012, respectively.

Deeply troubled by all the stomach related problems Mummy was facing in those days and weeks, on 10^th October 2012, we again visited GI-3 at Hospital No.4 to discuss mom’s issues and he advised her to take Ganoton or Cintapro when faced with acidity/gas problem.

Week 10

17th October, 2012

Tenth Velcade injection Dose (2mg) administered through the Vein on Mummy’s hand using a 5ml syringe and a Scalp Vein Set followed by Dexamethasone 20mg tablets on 17^th and 18^th October 2012, respectively.

Stomach/Abdominal pain related issues continued to trouble Mom.

Week 11

24th October, 2012

Eleventh Velcade injection Dose (2mg) administered through the Vein on Mummy’s hand using a 5ml syringe and a Scalp Vein Set followed by Dexamethasone 20mg tablets on 24^th and 25^th October 2012, respectively.

This time around, post the medication, Mummy complained of severe Pain in lower right back and right hips. We got an MRI Screening of Mummy’s Spine and X-Rays of the Back done on the advice of Orthopedic Doctor O-1 at Hospital No. 4. All reports categorically and thankfully stated that, “no obvious pathology detected”, and on 25 October 2012, O-1, prescribed my mom to take a 7-day course of Ultracet tablet, twice daily course. This course of medication helped and mummy’s pain in the backs and hips, subsided.

Week 12

1st November, 2012

Twelfth Velcade injection Dose (2mg) administered through the Vein on Mummy’s hand using a 5ml syringe and a Scalp Vein Set followed by Dexamethasone 20mg tablets on 1^st and 2^nd November 2012, respectively.

Week 13

8th November, 2012

Thirteenth Velcade injection Dose (2mg) administered through the Vein on Mummy’s hand using a 5ml syringe and a Scalp Vein Set followed by Dexamethasone 20mg tablets on 8^th and 9^th November 2012, respectively.

Abdominal pain continued to bother Mom as it has done every week since this Velcade-Dexamethasone treatment began. Week 12 and Week 13 were no different.

Week 14

15th November, 2012

Fourteenth Velcade injection Dose (2mg) administered through the Vein on Mummy’s hand using a 5ml syringe and a Scalp Vein Set followed by Dexamethasone 20mg tablets on 15^th and 16^th November 2012, respectively.

Mummy contracted Severe Gastrointestinal Infection (GI) on 21^st November 2012, she spent that night vomiting and passing loose stools. I relied on two tablets, named Imodium and Domstal that were written about in the Discharge Summary of Hospital No. 3 where she was admitted in July 2012 to provide her immediate relief on the middle of that night. On 22^nd November 2012, I took Mom to Hospital No. 4 to get her examined by GI-3, whom we trusted. GI-3 put Mom on a 5-day antibiotic course containing the following medicines, I read about all of them on the internet as I was by now, habituated into doing:

o   ORNI-O: BD i.e. Twice daily

o   VSL3: OD i.e. Once daily

o   Colimax: BD i.e. Twice daily

o   Rablet D: BD i.e. Twice daily

o   Imodium: SOS i.e. as required during emergency

Week 15

26th November, 2012

We delayed the 15^th Dose of 2mg Velcade by 3 days till Mummy’s gastrointestinal infection post the 14^th dose intake had subsided and she was comfortable enough.

Fifteenth Velcade injection Dose (2mg) administered through the Vein on Mummy’s hand using a 5ml syringe and a Scalp Vein Set followed by Dexamethasone 20mg tablets on 26^th and 27^th November 2012, respectively.

The 5-day Antibiotic course for Severe GI Infection was repeated by us in the week post 15th dose on GI-3’s advice

To combat her throat infection, she was also put on a twice daily course of Allegra 120mg tablets for 3 days, on the advice of H-2

Week 16

3rd December 2012

Sixteenth and the final Velcade injection Dose (2mg) administered through the Vein on Mummy’s hand using a 5ml syringe and a Scalp Vein Set followed by Dexamethasone 20mg tablets on 3^rd and 4^th December 2012, respectively. Mom and me breathed a sigh of relief and went to the Cafeteria downstairs for our Tea and snacks, it was a customary practice for us both after our weekly ordeal at H-2’s private OPD Clinic at Hospital No. 3; that evening was special for us both, we thought and celebrated as if our bad and tough days were now behind us.

H-2 had asked us to get Mom’s Free Light Chain Assay and Beta2 Microglobulin Tests done again and we did give the samples the next day for testing.

Week 4 to Week 8 - Account of Chemotherapy given for Multiple Myeloma

Week 5

12th September 2012

Fifth Velcade injection (Dose 2mg) administered through the Vein on Mummy’s hand using a 5ml syringe and a Scalp Vein Set followed by Dexamethasone 20mg tablets on 12^th and 13^th September 2012, respectively.

While there was no blood in stools reported that week by Mummy, she continued to experience abdominal pain and we continued with the Norflox and Colimax course from 14^th September till 18^th September 2012 for relief.

Week 6

19th September 2012

Sixth Velcade injection (Dose 2mg) administered through the Vein on Mummy’s hand using a 5ml syringe and a Scalp Vein Set followed by Dexamethasone 20mg tablets on 19^th and 20^th September 2012, respectively.

Again, like last week, while there was no blood in stools reported that week by Mummy, she continued to experience abdominal pain and we continued with the Norflox and Colimax course from 21^st September till 25^th September 2012 for relief.

When we were seated outside the H-2’s clinic that day, I also learnt another startling fact that made me understand how Doctor’s gauge the financial capabilities of patients and their caretakers so soon. I learnt through my interaction with another patients’ caretaker that though H-2 had recommended that we buy Injection Velcade (the imported variant containing the drug named Bortezomib) that was costing us Rs.25000 per 2.5 mg dose, there was also Indian pharma companies making generic variants of Bortezomib with which were approximately /6^th the price of Velcade; the ones who could not afford the original variant opt for these ones.

Also by now, Mummy’s veins in her left hand were rupturing and it was getting difficult to insert the scalp vein set, H-2 suggested we opt for a 23 Number Gauge Scalp Vein set made by a Malaysian Company named ‘TOP’, we searched everywhere for it and then finally my brother found it at a Government Hospital Pharmacy and purchased enough from there to last us for the remaining leg of the treatment.

Week 7

26th September 2012

Seventh Velcade injection Dose (2mg) administered through the Vein on Mummy’s hand using a 5ml syringe and a Scalp Vein Set followed by Dexamethasone 20mg tablets on 26^th and 27^th September 2012, respectively.

No bleeding was experienced by Mom in her stools since she was using Mesacol suppository over the past 3 weeks. This medication seemed to have successfully healed the solitary rectal ulcer detected in Sigmoidoscopy done on 27^th July 2012 at Hospital No.3. I concluded that my Mummy never had Rectal TB and the Rectal bleeding she was having was never because of Rectal TB either, she just had a stress-induced Rectal ulcer, which burst at the thought of being admitted in the hospital on that fateful afternoon of 26^th July 2012 in the Washroom of the OPD Waiting Lounge at Hospital No. 3

However, her abdominal pain continued; I think I had identified my own reasons behind these abdominal pains after a lot of reading on this subject; the reason being that Chemotherapy drugs besides targeting the cancerous cells in our body, also target a lot of healthy cells in the body and stomach lining being made up of very sensitive cells is the one that gets affected the most and the quickest post chemotherapy.

Week 8

3rd October 2012

Eighth Velcade injection Dose (2mg) administered through the Vein on Mummy’s hand using a 5ml syringe and a Scalp Vein Set followed by Dexamethasone 20mg tablets on 3^rd and 4^th October 2012, respectively.

During the course of this week, upon the advice of H-2, we gave mummy’s samples for Serum Protein Immunofixation Electrophoresis (SIFE) Tests and Free Light Chain Immuno Assay Tests to be performed.  H-2 told us that these Tests were usually performed mid-way through the treatment to check on the progress/efficacy of treatment being administered to the patient. SIFE Reports showed ‘NO M-Spike’, which implied the treatment was progressing well.

H-2 also wanted Mom to be put on a medication called Zometa (with chemical named Zoledronic Acid) that inhibits the release of Calcium from Bones; he told me it will help Mummy. I went home and read all about it on the internet, the side effects of this medication were far too many including warnings regarding this medicine not to be given to anyone with kidney related issues and with my mother already having Chronic Kidney Disease due to her prolonged NSAID intake as described earlier and too many other problems already, I strongly opted against it and told H-2 that we are not keen to start on it. Again, H-2 did not quite like me saying this because normally patients or their caretakers here in our country just go by the Doctor’s choice of medication and do not oppose or counter-question their choice, but I was. It didn’t bother me, for it was all about the well-being of my mother and the responsibility was squarely on my shoulders.

Week 1 to Week 4 - Account of Chemotherapy given for Multiple Myeloma

Each week presented with itself a set of challenges, and for ease of convenience of you all reading this little booklet of mine, I will share the happenings of each week, with details of side effects of medication and the remedies sought and explored in a paragraph-wise manner per week.

Week 1

14th August 2012

First Velcade injection (Dose 2mg) administered through the Vein on Mummy’s hand using a 5ml syringe and post diluting dose with sterile water and a Scalp Vein Set. 

It was our responsibility to get the Velcade Injection in an Ice-Pack, the 5ml Syringe, Sterile Water and the Scalp Vein Set every time we come for the administration of Velcade. H-2 charged us a flat rate of Rs.1000/- in cash for each of the next 16 weeks, whenever we came to him for Velcade administration. H-2 administered the dose in his clinic itself with mummy seated on his right on a patient chair. As he pushed the dose in, he was interacting with other patients seated in front of him or instructing his Attendant to check the reports of the patient. H-2 was a busy man, never waiting a second of his to see patients and make money in the process. His demeanor was ‘straight’, never a smile crossed his terse-looking face. I stood behind Mom, comforting her while holding the lab reports and the bag in which we used to get them. I asked questions I needed to off H-2, he didn’t like me for the questions I asked, I was fearful of his strict personality, but I still battled my fears and asked. This pattern repeated itself week after week, for the next 16 weeks and I have written the key pointers below.

The same day, keeping in mind my Mother’s other blood parameters, H-2 also advised Mummy to take the following medicines regularly:

o   Vitamin B-Complex: multivitamin

o   Orofer: These were Iron supplement tablets to help with Haemoglobin production

o   Storvas: This was to help regulate Blood cholesterol levels, which at that time were on the higher side for Mummy

o   Eltroxin: This was to help Mom with her Hypothyroidism, whose tablets she was already taking for a few years now

o   Pan-D: This was to be taken first thing in the morning as this tablet helps with digestion related issues

o   Zyloric: This tablet was to bring down her abnormally high Uric acid levels

o Acyclovir 400 mg: This was a retroviral drug which Mummy was put on at a precautionary level so as to avoid a disease called “Shingles”, which is a side effect of Velcade intake.

Dexamethasone Intake at Home: 20mg Dexamethasone tablets taken later in the day on 14^th August 2012, orally with water by gulping down 5 tablets of 4mg each of this salt. It was a pain for Mom to open and take 5 tablets, no matter how small and tiny they were.15^th August 2012, at the same time as the day before, Mummy took the next dose of 20mg Dexamethasone

Side effects: A day or 2 days after taking the above-mentioned course of Dexamethasone, Mummy experiences pain in stomach and reports blood in stools.

Note: Every week, a day before visiting H-2 for the next dose of Velcade, we were getting Mummy’s CBC LFT and KFT done. This was being done to monitor her Blood parameters and functionality of Kidney and Liver. 

Week 2

21^st August 2012

Second Velcade injection (Dose 2mg) administered through the Vein on Mummy’s hand using a 5ml syringe and a Scalp Vein Set, same as in Week 1.And much like Week 1, Mummy took 20mg of Dexamethasone tablets on 21st and 22 August 2012, respectively and experienced the same side effects, to which H2 curtly said “live with it”.

Week 3

28th August 2012

Third Velcade injection (Dose 2mg) administered through the Vein on Mummy’s hand using a 5ml syringe and a Scalp Vein Set. And much like Week 1 and Week 2, Mummy took 20mg of Dexamethasone tablets on 28^th and 29^th August 2012, respectively and experienced the same side effects of abdominal pain and blood in stools.

Contrary to H-2 asking us to live with the side effects of Velcade and Dexamethasone, we decided to seek out a solution on our own and decided to find a Gastroenterologist. We decided to visit the OPD clinic of a Gastroenterologist (henceforth named GI-3) in Hospital No. 4 to help seek a cure for the Abdominal Pain that was bothering Mummy no end.

o   Mummy was advised by GI-3 to use Mesacol Suppository for 1 month to heal solitary rectal ulcer detected in Sigmoidoscopy done on 28 July 2012 at Hospital No. 3

o   On the advice of GI-3, we deposited the Rectal Biopsy* slides for review by his Team. (*Rectal biopsy was performed on 27th July 2012 at Hospital No. 3 by GI-1 and whose reports had said that Mummy had Rectal Tuberculosis (Rectal TB) and GI-2 at Hospital No.3 had put my mom on those big and ugly AKT4 Tablets that she was taking every morning since 7^th August 2012

Week 4

5th September 2012

Fourth Velcade injection (Dose 2mg) administered through the Vein on Mummy’s hand using a 5ml syringe and a Scalp Vein Set followed by Dexamethasone 20mg tablets on 5^th and 6^th September 2012, respectively.

Mummy’s abdominal pain worsens

At GI-3’s OPD Clinic on 7^th September 2012: The Doctor asked Mom to begin a 5 day Norflox 400 mg (BD i.e. twice daily) course over the next 5 days to combat stomach pain bothering her soon after taking Dexamethasone tablets as I have mentioned in previous weeks of treatment.

At GI-3’s OPD Clinic on 9^th September 2012, we heard some good news after a long time:

o   Post review of the Rectal Biopsy slides submitted last week, the Doctor/GI-3 said that their review rules out Mummy having Rectal TB and thus, with much relief, Mummy was told to stop taking those AKT4 tablets. What a relief it was!

o   The take-home lesson here is that “Please do get your Biopsy slides reviewed by more hospitals and doctors wherever possible”

o   To help Mom with her abdominal pain, GI-3 also advised that Mummy starts taking Colimax (BD i.e. twice daily) over the next 5 days.

The Chemotherapy Treatment for Multiple Myeloma begins

I tried finding another Hematologist to take Mummy to and zeroed in on another Hematologist at another Hospital. I took Mummy to him and we both found him better than the previous one and the best part was there were no recliners etc., and the medicine dose would be administered at his Private OPD Clinic at Hospital No. 4 by him itself.

Velcade® (Bortezomib), developed by Millennium Pharmaceuticals, Inc., is considered a medical breakthrough. It is the first myeloma treatment approved by the US Food and Drug Administration (FDA) in 2003.

At Hospital No.4, the Hematologist, henceforth named H-2 decided to put my mother on Velcade® -Dexamethasone Treatment for the next 16 weeks, in which once a week through IV (Intravenous route), he will administer 2mg Velcade and then split over two days, Day 1 being the day he administers Velcade and Day 2 being the following day, a 40 mg dose of Dexamethasone (name of the medicine salt) has to be given to her orally, which meant 20mg of Dexamethasone tablets each on Day 1 and Day 2, i.e. 5 tablets of 4mg Decdak tablets-the name of the brand we purchased. 

H-2 gave us contact details of a Pharma dealer who will home deliver Velcade injections to us in an ice pack, we agreed and called that Dealer. It was later I understood that all Doctors receive a commission every time they refer a patient to a Diagnostic Laboratory or Pharma Dealer/Agent.

Measuring the blood level of beta-2 microglobulin, a special protein found in myeloma, provides a useful indicator of the likely course of your disease (prognosis). High levels of beta-2 microglobulin indicate the presence of a large amount of myeloma cells, and / or the presence of kidney damage.

Whereas, Hematologist H-1 at Hospital No.3 had told me that he will put Mummy on Velcade-Dexamethasone and Thalidomide, abbreviated as VDT Treatment. When I asked H-2 about his reasons for excluding Thalidomide from Mummy’s treatment chart, H-2 said that, “Thalidomide is a useless drug, it makes patient feel sleepy all the time and constipated and what not, and that is the reason I don’t put my patients on it”. Point taken by me, I didn’t discuss or deliberate on it further. H-2 also asked me to get Mummy’s beta-2 microglobulin tests done, which we did. 

For the next 16 weeks, every week we visited the Private OPD clinic of H-2 at Hospital No.4, the scenes outside his clinic were the same every time, weak and fragile looking patients seated with anxious caretakers carrying in their hands a bundle of medical reports, all eagerly awaiting their turn! It couldn’t have been more depressing.

Mummy and I faced it, trying to encourage each other and smiling when we could for all that was good.