Shaheer, the 3 year old from Peshawar, died today ...
I hope there actually is some place called heaven and the little boy goes there ...
Makes me wonder ... Why the children? ... and then my thought goes to the parents ... They came with two kids and hope for a cure ... and now, when they are leaving ... one of the boys will be in a wooden box ...
For ages their land (near Khyber-pass in Hindukush) has been one of the most important connections between India and rest of the world ... today they have to fly to a third country (Dubai) to get back home ...
Life is strange ...
Saturday, March 31, 2007
Friday, March 30, 2007
A Thought for Shaheer
Folks spare a thought and a prayer for Shaheer, the 3 year old boy from Peshawar who underwent a Bone Marrow Transplant. Shaheer's graft (donated by his 2 year old brother) was accepted, but he has developed a serious complication called (possibly Drug Induced) Interstitial Pneumonia. None of the medicines seem to be working- the kid is on lung machine, heavy dose of Morphine and Steroids. He is fighting for his life in the ICU.
Such Interstitial Pneumonia is not very common here (someone said more common in radiation tratment patients in Australia). This is the first case in 15 years in CMC. If you know a Heamatology/Oncology/Pulmonology doctor who has successfully dealt with Interstitial Pneumonia (after Bone Marrow Transplant) and would be available on mail/phone then do let me know at baawara@gmail.com - Pls stop your search ... the little boy is no more
I hope the kid pulls thru ..
Such Interstitial Pneumonia is not very common here (someone said more common in radiation tratment patients in Australia). This is the first case in 15 years in CMC. If you know a Heamatology/Oncology/Pulmonology doctor who has successfully dealt with Interstitial Pneumonia (after Bone Marrow Transplant) and would be available on mail/phone then do let me know at baawara@gmail.com - Pls stop your search ... the little boy is no more
I hope the kid pulls thru ..
Monday, March 26, 2007
Chemo 10 - 9..8..7..6..5.....
The Countdown is on ... there are just 2 more Chemo's left.
Life's on a routine ... a boring routine ... the initial hiccups with OPD Chemo administration have been sorted ... and there's nothing much new ... Just bidding my time ... Chemo will get over ... Then there is a one month break ... after which I get a scan (called PET Scan ... more about this one when it comes) ... Scan will tell us the extent to which the Lymphoma has survived the Chemo. (we hope that all lymphoma will be wiped out, but realistically some might still remain) Then we let loose some radiation on the remaining bits of Lymphoma ... just to deliver the knock out punch :-) Since the scan is not 100% reliable- we will nuke the remaining tissue even if scan shows no malignancy.
Now some might think ... what's the point of PET Scan when it's results may not affect future course of treatment ... Well I don't know ... the doctor asked for it ... maybe it helps in identifying the targets for the Nuke machine
I have learnt that these guys use some serious equipment for nuking the cancer- linear accelerators and all. Will talk about these big guns when I get to see them.
The plan is to go back to Delhi on 10 April and then chill out. The treatment path is chalked out. There's nothing i can do which will improve my chances . So i am taking things easy ... I think Delhi is a good place for taking things easy.
Life's on a routine ... a boring routine ... the initial hiccups with OPD Chemo administration have been sorted ... and there's nothing much new ... Just bidding my time ... Chemo will get over ... Then there is a one month break ... after which I get a scan (called PET Scan ... more about this one when it comes) ... Scan will tell us the extent to which the Lymphoma has survived the Chemo. (we hope that all lymphoma will be wiped out, but realistically some might still remain) Then we let loose some radiation on the remaining bits of Lymphoma ... just to deliver the knock out punch :-) Since the scan is not 100% reliable- we will nuke the remaining tissue even if scan shows no malignancy.
Now some might think ... what's the point of PET Scan when it's results may not affect future course of treatment ... Well I don't know ... the doctor asked for it ... maybe it helps in identifying the targets for the Nuke machine
I have learnt that these guys use some serious equipment for nuking the cancer- linear accelerators and all. Will talk about these big guns when I get to see them.
The plan is to go back to Delhi on 10 April and then chill out. The treatment path is chalked out. There's nothing i can do which will improve my chances . So i am taking things easy ... I think Delhi is a good place for taking things easy.
Monday, March 19, 2007
Chemo 9 - You have to "Face" it
Long years ago ... when I was well and working ... Afshan(speaking purely as business partner) gave me this fine advice "go meet the clients" she said "else you will slowly turn into a face-less phone number and email-id" I was slow on uptake, thinking - why bother someone, waste their time and mine, when we can get all the work done on phone and email.
Friday's chemo was a reminder of that advice. It turned out to be a short demo-exercise on the need of putting a face (hopefully one which evokes recognition and empathy) to a name.
It was slated to be a long Chemo ... atleast 8 hours of drug infusion ... CMC OPD would not have handled it (they typically handle chemos that last less than 4 hours) ... so we had to get me admitted in one of the Haematology wards (called M wards locally, this includes M 1,2&3 and MTS 1,2,3&4)
Now M wards have a lot of patient load, so we had booked our room one week in advance ... We had played it safe ... asking for a room on Thursday (one day before the Chemo- so that Chemo could start early in morning ... also as a buffer just in case we had difficulty in getting the room) ... And we called M ward office almost daily- to remind them of our booking (obviously we were worried ... we din't want the chemo schedule to go awry because of some stupid room availability issue) ... each time we got the same reply - "we are not expecting any discharges, can't say anything yet"
Then we made a couple of trips to the office and realized that the lady seemed to be more helpful when "face to face" than on phone (on phone- "no rooms yet, pls try again later"... face-to-face - "yeah we are trying, will try to fix something up for you... definitely ..sure.. blah blah") . So on Thursday, when all the phone calls failed, we landed up at the office ... planted ourselves there and then convinced the lady that the ROOM IS INDEED NEEDED. We left after extracting a promise on getting a room first thing next morning.
Finally we did get our room ... not exactly early in the morning ... but after keeping our faces planted in front of her for about an hour and a half (It helps that I look like a cancer patient ... evoking some level of sympathy from the casual onlooker)
With the room problem out of our way, a doctor was needed - to give all the right instructions for the chemo to begin ... Getting the doc was the job for the nurses at M2 ... but why would they do it in a hurry? (They didn't realize the seriousness of the situation ... delay in giving Chemo meant delay in reaching home ... which meant me missing the starting of the cricket match ... really serious stuff)
This was another chance for me to use my "Face value". I just strolled into M3 (ward just above mine) and showed my face to Dr Biju (consultant who was around at that time) ... That did the trick ... being the nice doc that Dr Biju is, he was happy to see me, asked me about my health and when he found out that I had come for the Chemo he set things in motion right away ... two minutes later- Dr Abhijit had written down all the instructions and prescriptions ... the chemo nurses were already being called.
Chemo nurses looked pretty grumpy ... having to come down on such a short notice ... thankfully they too recognized me (I am 9 chemos old ... most Heamat Department people know me by now) ... one of them smiled and said ... " oh so its you who has got admitted in room 209 " ... and things went smoothly after that (She even found a vein in the first try)
That was not the end of the demo on face-power. Chemo got over by 6:30 (and my hopes of watching the match from the beginning soared) but the discharge- bill refused show up ... that despite all our requests for a quick discharge and countless phone calls... at 8:15 Afshan had had enough ... she took charge of things, went directly to the billing section and got the bill settled in 5 minutes flat ... proving that showing your face fastens everything ... manifolds :-)
Some of you might have started thinking that CMC is a lousy place ... things don't get done on there own, you have to push for stuff to move, etc, etc ... don't think that way ... people here are nice ... they are polite and the (at least) do things once they see your face ... you must compare it with the usual places ... where things don't move at all, despite all your pushing and prodding ...
that's all for now ... going to meet my doc today ... to discuss the future path of treatment
Friday's chemo was a reminder of that advice. It turned out to be a short demo-exercise on the need of putting a face (hopefully one which evokes recognition and empathy) to a name.
It was slated to be a long Chemo ... atleast 8 hours of drug infusion ... CMC OPD would not have handled it (they typically handle chemos that last less than 4 hours) ... so we had to get me admitted in one of the Haematology wards (called M wards locally, this includes M 1,2&3 and MTS 1,2,3&4)
Now M wards have a lot of patient load, so we had booked our room one week in advance ... We had played it safe ... asking for a room on Thursday (one day before the Chemo- so that Chemo could start early in morning ... also as a buffer just in case we had difficulty in getting the room) ... And we called M ward office almost daily- to remind them of our booking (obviously we were worried ... we din't want the chemo schedule to go awry because of some stupid room availability issue) ... each time we got the same reply - "we are not expecting any discharges, can't say anything yet"
Then we made a couple of trips to the office and realized that the lady seemed to be more helpful when "face to face" than on phone (on phone- "no rooms yet, pls try again later"... face-to-face - "yeah we are trying, will try to fix something up for you... definitely ..sure.. blah blah") . So on Thursday, when all the phone calls failed, we landed up at the office ... planted ourselves there and then convinced the lady that the ROOM IS INDEED NEEDED. We left after extracting a promise on getting a room first thing next morning.
Finally we did get our room ... not exactly early in the morning ... but after keeping our faces planted in front of her for about an hour and a half (It helps that I look like a cancer patient ... evoking some level of sympathy from the casual onlooker)
With the room problem out of our way, a doctor was needed - to give all the right instructions for the chemo to begin ... Getting the doc was the job for the nurses at M2 ... but why would they do it in a hurry? (They didn't realize the seriousness of the situation ... delay in giving Chemo meant delay in reaching home ... which meant me missing the starting of the cricket match ... really serious stuff)
This was another chance for me to use my "Face value". I just strolled into M3 (ward just above mine) and showed my face to Dr Biju (consultant who was around at that time) ... That did the trick ... being the nice doc that Dr Biju is, he was happy to see me, asked me about my health and when he found out that I had come for the Chemo he set things in motion right away ... two minutes later- Dr Abhijit had written down all the instructions and prescriptions ... the chemo nurses were already being called.
Chemo nurses looked pretty grumpy ... having to come down on such a short notice ... thankfully they too recognized me (I am 9 chemos old ... most Heamat Department people know me by now) ... one of them smiled and said ... " oh so its you who has got admitted in room 209 " ... and things went smoothly after that (She even found a vein in the first try)
That was not the end of the demo on face-power. Chemo got over by 6:30 (and my hopes of watching the match from the beginning soared) but the discharge- bill refused show up ... that despite all our requests for a quick discharge and countless phone calls... at 8:15 Afshan had had enough ... she took charge of things, went directly to the billing section and got the bill settled in 5 minutes flat ... proving that showing your face fastens everything ... manifolds :-)
Some of you might have started thinking that CMC is a lousy place ... things don't get done on there own, you have to push for stuff to move, etc, etc ... don't think that way ... people here are nice ... they are polite and the (at least) do things once they see your face ... you must compare it with the usual places ... where things don't move at all, despite all your pushing and prodding ...
that's all for now ... going to meet my doc today ... to discuss the future path of treatment
Saturday, March 10, 2007
Chemo 8 - Hallu hallu
It's been quite some time since I last wrote ... many would be wondering why ... after all, in the last 4-5 weeks , I have clocked at least two posts per week ...
Well ... I have not written because my body has asked me to take some rest ... duly obliging, I spent the last week resting ... taking time off from everything ... didn't even answer mails ... enjoyed the bliss of doing nothing (not that I was doing much earlier) ... but that's how it's been ... that's the type of energy that's left in me ... enough to keep a happy flow of thought going ... but not enough to let me put a sustained effort in anything ... its like the body is saying "... enough dude ... show some respect for the intensive chemo regime ... take it easy for some time ..."
So "Taking it easy" is the prevailing sentiment ... everything at a slow serene pace .... Hallu hallu ... as they would say in Hyderabadi ...
There was one exception though ... 8th Chemo ... it was not slow ... infact it was a fast hurried affair ... mostly because we had smartened up ... we didn't want to repeat that six hour ordeal of the 7th chemo ... and with a little help from Dr Auro (my consulting doctor ... very nice and knowledgeable) ... I managed to be the first patient in the chemo room ... FIFO ... I was the first out too ... in fact I left home at 12 and was back from chemo by 2 ... This must be some sort of an all-time record for fastest friday afternoon chemo at CMC ... (the fact that this particular chemo lasted just 15 minutes helped)
Other updates -
CT Scan - report shows that tumour has shrunk by almost half on all three dimensions. Volume wise tumour is down to almost 1/5th the original volume
Blood Counts - At a decent level of 5800
Mood - upbeat
that's all for now ... till next time ...
Well ... I have not written because my body has asked me to take some rest ... duly obliging, I spent the last week resting ... taking time off from everything ... didn't even answer mails ... enjoyed the bliss of doing nothing (not that I was doing much earlier) ... but that's how it's been ... that's the type of energy that's left in me ... enough to keep a happy flow of thought going ... but not enough to let me put a sustained effort in anything ... its like the body is saying "... enough dude ... show some respect for the intensive chemo regime ... take it easy for some time ..."
So "Taking it easy" is the prevailing sentiment ... everything at a slow serene pace .... Hallu hallu ... as they would say in Hyderabadi ...
There was one exception though ... 8th Chemo ... it was not slow ... infact it was a fast hurried affair ... mostly because we had smartened up ... we didn't want to repeat that six hour ordeal of the 7th chemo ... and with a little help from Dr Auro (my consulting doctor ... very nice and knowledgeable) ... I managed to be the first patient in the chemo room ... FIFO ... I was the first out too ... in fact I left home at 12 and was back from chemo by 2 ... This must be some sort of an all-time record for fastest friday afternoon chemo at CMC ... (the fact that this particular chemo lasted just 15 minutes helped)
Other updates -
CT Scan - report shows that tumour has shrunk by almost half on all three dimensions. Volume wise tumour is down to almost 1/5th the original volume
Blood Counts - At a decent level of 5800
Mood - upbeat
that's all for now ... till next time ...
Monday, March 05, 2007
Chemo 7 - A Dip in the sea of humanity
The sight was overwhelming ... The waiting area (with rows of fixed metal-bucket-chairs, an overworked fan and a TV) was full ... the hallway, with a continuous run of backless-wooden-benches, was full too (the less inhibited were squatting on the hallway floor) ... The elevator and stairway landing was substantially big ... it had plastic seats arranged in tight rows ... these rows too were full ... so were all leaning spaces on stairway railings ... the stairs themselves (except for a small way for people to climb) were full ... the crowd had overflowed down to the ground-floor ... which also had seats ... all fully occupied .. to the last broken-three-legged-seat and one more ...
And into this vast sea of humanity two more drops were added - Afshan and Tanweer Alam ... the concerned-wife and first-time-outpatient ... walked in to the Friday OPD - Department Haematology, Christian Medical College, Vellore.
I wasn't actually anticipating a quite stroll straight into the doctor's room ... I expected a Queue, with most seats in waiting area occupied ... but this was slightly beyond my expectations ... this was more like the crowd outside an small-town-cinema-theatre ... waiting for tickets of first-day-first-show of a mega block buster (perhaps starring Govinda and scantily-clad-item-girls) ... Only that people were less loud, more civilized and there was no pushing and shoving (maybe because a substantial chunk of the people were seriously ill ... and the rest were anxious and concerned relatives)
Earlier ... the day started with a morning trip to the Hospital ... I gave blood sample at 8:30 AM (the blood count report is a prerequisite for Chemo) ... Then we went to "Saravana Bhavan" ... which is one of the best chains of eateries for dosas, Idlis, Vadas, Murrukks and the kinds (the firang junta need not feel left out here ... they have eating joints all over the world) ... then Home ... Bath etc ...
By 1:00 pm reported to Heamat MRO (with appointment slip) ... MRO guys kept us waiting for 20 minutes, did something with our file and then sent us to the OPD ... which had the legendary crowd ... we stood waiting for an hour ... then Afshan had the bright idea of putting some guilt in the heart of one of the sitting relatives ... coaxing a seat for me (come on ... I am a patient here ... entitled to some special treatment) ... We met Vedika and Vedant, 16 month olds non-identical twins from Maharashtra ... Vedika will be the marrow donor for Vedant in 6 months time ... We shared some Dairymilk chocholates with these kids ... Shared some chocho cookies with a poor boy who was eyeing them while I was eating ... most of the time - we spent waiting
By 3:00 we still hadn't got a chance to meet the doctor ... Afshan did some running around ... talked to the doctor on phone (our regular consultant was on a week long leave, so we were assigned to an alternate) ... Doc said that he would call us as soon as our file reached him ... The file finally reached the doc by 4 ... consultation was just 10 minutes (all normal ... go get your Chemo ... CT scan report will come by Monday) ... we reached Chemo Room-1 ... nurses gave us a list of Chemo drugs to buy .... finally at 5:00 pm I was one of the last patients to be given Chemo ... The damn thing got over if 45 flat. (finally after that 5 hour wait)
My next Chemo is going to be 15 minutes short ... I plan to talk to my Doctor and work out a way to beat the OPD crowd ...
Clearly OPD at CMC is tough road to walk ... there is such a huge crowd of people walking the same road that one moves at a snail's pace ...
And into this vast sea of humanity two more drops were added - Afshan and Tanweer Alam ... the concerned-wife and first-time-outpatient ... walked in to the Friday OPD - Department Haematology, Christian Medical College, Vellore.
I wasn't actually anticipating a quite stroll straight into the doctor's room ... I expected a Queue, with most seats in waiting area occupied ... but this was slightly beyond my expectations ... this was more like the crowd outside an small-town-cinema-theatre ... waiting for tickets of first-day-first-show of a mega block buster (perhaps starring Govinda and scantily-clad-item-girls) ... Only that people were less loud, more civilized and there was no pushing and shoving (maybe because a substantial chunk of the people were seriously ill ... and the rest were anxious and concerned relatives)
Earlier ... the day started with a morning trip to the Hospital ... I gave blood sample at 8:30 AM (the blood count report is a prerequisite for Chemo) ... Then we went to "Saravana Bhavan" ... which is one of the best chains of eateries for dosas, Idlis, Vadas, Murrukks and the kinds (the firang junta need not feel left out here ... they have eating joints all over the world) ... then Home ... Bath etc ...
By 1:00 pm reported to Heamat MRO (with appointment slip) ... MRO guys kept us waiting for 20 minutes, did something with our file and then sent us to the OPD ... which had the legendary crowd ... we stood waiting for an hour ... then Afshan had the bright idea of putting some guilt in the heart of one of the sitting relatives ... coaxing a seat for me (come on ... I am a patient here ... entitled to some special treatment) ... We met Vedika and Vedant, 16 month olds non-identical twins from Maharashtra ... Vedika will be the marrow donor for Vedant in 6 months time ... We shared some Dairymilk chocholates with these kids ... Shared some chocho cookies with a poor boy who was eyeing them while I was eating ... most of the time - we spent waiting
By 3:00 we still hadn't got a chance to meet the doctor ... Afshan did some running around ... talked to the doctor on phone (our regular consultant was on a week long leave, so we were assigned to an alternate) ... Doc said that he would call us as soon as our file reached him ... The file finally reached the doc by 4 ... consultation was just 10 minutes (all normal ... go get your Chemo ... CT scan report will come by Monday) ... we reached Chemo Room-1 ... nurses gave us a list of Chemo drugs to buy .... finally at 5:00 pm I was one of the last patients to be given Chemo ... The damn thing got over if 45 flat. (finally after that 5 hour wait)
My next Chemo is going to be 15 minutes short ... I plan to talk to my Doctor and work out a way to beat the OPD crowd ...
Clearly OPD at CMC is tough road to walk ... there is such a huge crowd of people walking the same road that one moves at a snail's pace ...
Wednesday, February 28, 2007
Home ... Home Again
Saturday was the day I had been waiting for... on Saturday I moved out of the hospital and back to home ... back to Shums, Afshan, Amma and Aapa ... back to home cooked food ... and back to generous pampering ... Of course, the home in Vellore is not like the one we have at Delhi ... while Vellore home is different, it is by no means inferior or bad ... in fact, I like the place ... Vellore ... its got the small town feel (probably cause it IS a small town) ... you don' t have to travel too far to get stuff, things move at a human pace and there there is no chaos (especially on the roads)
The fact that the doctors have shown confidence by to letting me out, is encouraging. (It proves that mine is not a total gone-case ... something we have known right from the beginning ... haven't we?) ... From now on I will take my Chemo therapy as an out-patient ... which, I must say, is not an encouraging idea ... it means that Afshan will have to stand in long ques for getting appointments and making payments ... while I will have que-up for giving blood samples and for getting Chemo ... But we prefer the out-patient status ... it comes with the comfort of home.
Home ... in Vellore ... is a 2 BHK house with 3 bathrooms, a store room and is on the first floor ... It sports a decent balcony (Shumzi's swing has been put in the balcony) ... under our balcony is the mezzanine floor balcony and a single room ... we have also taken the Mezz-floor room as well ... It serves as my day-time abode of not-so-quite (due to construction next door) solitude ... The room doubles/triples/Multiples-up as a study/office/guest bed-room/etc ... Mom has got basic kitchen stuff up and running. And we have a reliable "bai" for Jhaadu-Poocha-Bartan ... Our long-time house-help(family member by now... he is on our ration-card) Ramzaan is a big hit with Shums and helps with the kid for at least 4-5 hours a day.
So all-in-all life is going on a smooth track ... Usual things ...happening at usual pace ... Day before - we took Shums for his Hepatitis A1 immunization .... today- I have a CT-scan scheduled
in another hour ... it should tell us the current size of my tumour ... Then we have my 7th Chemo (and my first as an out-patient) on friday .... and so life goes on merrily ...
Now ... I got to go ... and have a bath before heading out to the hospital for the CT ... will keep you guys posted ...
The fact that the doctors have shown confidence by to letting me out, is encouraging. (It proves that mine is not a total gone-case ... something we have known right from the beginning ... haven't we?) ... From now on I will take my Chemo therapy as an out-patient ... which, I must say, is not an encouraging idea ... it means that Afshan will have to stand in long ques for getting appointments and making payments ... while I will have que-up for giving blood samples and for getting Chemo ... But we prefer the out-patient status ... it comes with the comfort of home.
Home ... in Vellore ... is a 2 BHK house with 3 bathrooms, a store room and is on the first floor ... It sports a decent balcony (Shumzi's swing has been put in the balcony) ... under our balcony is the mezzanine floor balcony and a single room ... we have also taken the Mezz-floor room as well ... It serves as my day-time abode of not-so-quite (due to construction next door) solitude ... The room doubles/triples/Multiples-up as a study/office/guest bed-room/etc ... Mom has got basic kitchen stuff up and running. And we have a reliable "bai" for Jhaadu-Poocha-Bartan ... Our long-time house-help(family member by now... he is on our ration-card) Ramzaan is a big hit with Shums and helps with the kid for at least 4-5 hours a day.
So all-in-all life is going on a smooth track ... Usual things ...happening at usual pace ... Day before - we took Shums for his Hepatitis A1 immunization .... today- I have a CT-scan scheduled
in another hour ... it should tell us the current size of my tumour ... Then we have my 7th Chemo (and my first as an out-patient) on friday .... and so life goes on merrily ...
Now ... I got to go ... and have a bath before heading out to the hospital for the CT ... will keep you guys posted ...
Friday, February 23, 2007
Chemo 6 - Time to think of the inequities
Today was an odd day ... atleast it had odd beginnings ...
The day started off early ... too early ... I was up at 2 in the night (after having slept at 9 the previous) ... then tossed around in the bed ... couldn't get much sleep ... generally waited for the sun to come up ... and when the sun finally did rise ... I got up ... had bath ... had breakfast ... and when it was time to take medicines ... oddity again... I ended up taking Metformin (Diabetes medication, causes nausea) ... rather the nurse gave it to me (not her fault too, seems like the junior resident goofed up) ... apparently I was not supposed to take Metformin (it will add to the nausea of Chemo) ...(Latter Addition: Maybe the doctor didn't goof up, I am still taking the medicine ... though one doctor was saying that he would take it off ... that doc is on leave ... I have to check on the next OPD appointment)
Then ... The Chemo nurse couldn't find a good vein in my right hand ... so got the IV line set up on the left hand ... that's a second consecutive week for the hand ... the veins of my left hand had turned red after last week's Chemo ... I wonder if repeating the hand was a good thing to do ...
... there was more action for the morning ... the blog post (that I was writing in the morning) ... got accidentally deleted ...
Anyways ... Chemo started around 10 in the morning ... its 7:30 in the evening ... the chemo is still going on ... it has already outlasted a "sabzi wali maggi", two mausambis, Tehri, a cheese sandwich, mutter-paneer and rotis + a shot of Insulin ... (obviously, today was the day-off for diabetic-diet :-) ... it might go on for another hour or so.
Rituximab was the star of the day ... it went on for six long hours ... gave me enough time to ponder on the absolute unfairness of it's pricing ... The drug is Hi-Tech, cloned, artificially-engineered, trans-species, genetically-modified, all the hu-ha and the works ... at 1.35 lacs/700 mg dose ... the price is impressive too ... but I don't want to crib about the absolute price per se ... Typically a fortune is spent in developing a hit drug like Rituximab ... after all, the pharma firm(Roche in this case) would have spent lots on chasing thousands of molecules.. spending millions on clinical trials etc ... Roche has to recoup these costs and make some profits too ... hence the high prices ... In other words ... they have a case when they ask for a pound of the patient's flesh ... lets not begrudge them their rightful due ...
What I totally oppose is this - While, Roche asks for a "pound of flesh" (high price) from its American patients ... it's demanding both legs, both eyes and the good arm (impossible price) from the Indian ones ... Here's how - The drug appears to be 25% cheaper in India ( my dose would have costed around 1.8 lacs in America) ... but, in actuality, it is still way beyond the average Indian's reach ... The Aam Aadmi has to spend 12 years of his earnings on a 4 dose treatment ... the American Joe needs to spend just 5 month's of earnings for the same treatment ... how very unfair.
Indian cancer patients are getting a raw deal ... we are being made to shell out a disproportionately large portion of our life's earnings to sustain R&D cost of new drugs ... in practice, we are cross-subsidising patients who are way better-off than us ... enough is enough ... we better wake up and smell the coffee ... It's time we start taking exceptions on patent-protection of life-critical drugs ... or at least threaten the Pharma firms with such exceptions ... we have to have down to earth prices in this country...
Phew!!! ... that was serious stuff ... I have been typing away with one hand for way too long now (IV drip is on the other hand) ... the Chemo's got over too ... time to take a break ... we'll catch upwith you again in the next post ... till then ... ciao
The day started off early ... too early ... I was up at 2 in the night (after having slept at 9 the previous) ... then tossed around in the bed ... couldn't get much sleep ... generally waited for the sun to come up ... and when the sun finally did rise ... I got up ... had bath ... had breakfast ... and when it was time to take medicines ... oddity again... I ended up taking Metformin (Diabetes medication, causes nausea) ... rather the nurse gave it to me (not her fault too, seems like the junior resident goofed up) ... apparently I was not supposed to take Metformin (it will add to the nausea of Chemo) ...(Latter Addition: Maybe the doctor didn't goof up, I am still taking the medicine ... though one doctor was saying that he would take it off ... that doc is on leave ... I have to check on the next OPD appointment)
Then ... The Chemo nurse couldn't find a good vein in my right hand ... so got the IV line set up on the left hand ... that's a second consecutive week for the hand ... the veins of my left hand had turned red after last week's Chemo ... I wonder if repeating the hand was a good thing to do ...
... there was more action for the morning ... the blog post (that I was writing in the morning) ... got accidentally deleted ...
Anyways ... Chemo started around 10 in the morning ... its 7:30 in the evening ... the chemo is still going on ... it has already outlasted a "sabzi wali maggi", two mausambis, Tehri, a cheese sandwich, mutter-paneer and rotis + a shot of Insulin ... (obviously, today was the day-off for diabetic-diet :-) ... it might go on for another hour or so.
Rituximab was the star of the day ... it went on for six long hours ... gave me enough time to ponder on the absolute unfairness of it's pricing ... The drug is Hi-Tech, cloned, artificially-engineered, trans-species, genetically-modified, all the hu-ha and the works ... at 1.35 lacs/700 mg dose ... the price is impressive too ... but I don't want to crib about the absolute price per se ... Typically a fortune is spent in developing a hit drug like Rituximab ... after all, the pharma firm(Roche in this case) would have spent lots on chasing thousands of molecules.. spending millions on clinical trials etc ... Roche has to recoup these costs and make some profits too ... hence the high prices ... In other words ... they have a case when they ask for a pound of the patient's flesh ... lets not begrudge them their rightful due ...
What I totally oppose is this - While, Roche asks for a "pound of flesh" (high price) from its American patients ... it's demanding both legs, both eyes and the good arm (impossible price) from the Indian ones ... Here's how - The drug appears to be 25% cheaper in India ( my dose would have costed around 1.8 lacs in America) ... but, in actuality, it is still way beyond the average Indian's reach ... The Aam Aadmi has to spend 12 years of his earnings on a 4 dose treatment ... the American Joe needs to spend just 5 month's of earnings for the same treatment ... how very unfair.
Indian cancer patients are getting a raw deal ... we are being made to shell out a disproportionately large portion of our life's earnings to sustain R&D cost of new drugs ... in practice, we are cross-subsidising patients who are way better-off than us ... enough is enough ... we better wake up and smell the coffee ... It's time we start taking exceptions on patent-protection of life-critical drugs ... or at least threaten the Pharma firms with such exceptions ... we have to have down to earth prices in this country...
Phew!!! ... that was serious stuff ... I have been typing away with one hand for way too long now (IV drip is on the other hand) ... the Chemo's got over too ... time to take a break ... we'll catch upwith you again in the next post ... till then ... ciao
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