I think I will start sharing my story a little later, all I will say now is my initial diagnosis was "advanced prostate cancer -Stage -IV - M1b - Gleason 4+3" - which means my cancer has spread to bones and cancer cells have differentiated to extremes and don't look like original ones at all. This at the time the disease was detected.
So my plea is: do tell all your male siblings to go for PSA every 6 months and your first cousins every year and your sisters for mammography perhaps every year and let them be aware of self examination of breasts. Prostate and breast cancers reside on related genes.
Good wishes to everyone and hope this new year will have discoveries of life saving medications for us all.
Here is my first part:
A little Introduction and Joys of life:
Now 48+, I am Pradeep Raj from Hyderabad, a reasonable sized city in India. I was born here and I just love the city, though a little unhappy now to see old building disappear, old ways disappear, roads getting congested by the day. But on the flip side we have some of the finest Hospitals, Software Centers, Colleges, Research Institutes, Pharmaceuticals with in-house research facilities and so on.
I work for government and have a great enthusiasm for it. I am geologist by education and landed with Ground Water Department, a Government Organisation, so turned as Hydrogeologist. But before that I was CSIR Junior Research and Senior Research Fellow and got my Ph.D. That work was on Coal.
I continued to take interest in teaching and research, could publish 20 papers in reasonable Journals. Made peer reviews too (for the technical content)
All this may not be needed for the blog but that was the success that I enjoyed and that was a great source of joy for me, so I thought I should share that with you.
Life was beautiful and I would thank my luck so many, so many times, though I did not get what I wanted most –these always reminded me that I was not that lucky after all. I am a rationalist and believe in science to a level which in eyes of some of my friends borders on fanatic traits –well but I would like to reiterate I just loved what I was doing; Science is such a wonderful way to be spending life.
April 2006 – what the summer had in store?
Then comes April 2006, 2nd Friday of the Month I get a little back-ache. I skip work thinking I am spending too much time on my PC and that is pinching my back. I thought a little rest, Friday to Sunday should do me good and indeed I was fully up by Monday. I forgot about it.
June 2006 I feel throbbing pain in my right thigh, like never before in life. Doctors find a little inguinal hernia and think that the pain is all because of it! I was put on pain killers and subsequently on stomach acid blockers (Proton Pump blockers), I was advised Surgery, and was posted for it on 2 August 2006. In between I had bouts of fever; my haemoglobin went down to 9g/dL, later I fond that my platelet count -though still within normal limits- was showing a downward trend. I was treated with some antibiotics and antipyretics
Post surgery I was put on the usual routine of antibiotic regime along with analgesics and antipyretics. But when analgesics were withdrawn my pain returned! This time I find it go down to knee and below.
Next I was asked to consult an orthopaedic surgeon. His initial diagnosis was Sciatica, but he was frank enough to tell me that it does not look like classic sciatica, though.
He puts me on Diclofenac a powerful (non-steroidal) analgesic. Symptoms do not wane, the drug is changed to extended release version but to no tangible relief. This was for about 5 weeks and then I was told to get an MRI done.
September 2006 - Festivities begin but where do I land:
30 September 2006, Saturday, I go for MRI and bring back just the soft copy; the report of the radiologist was due on following Monday. I start viewing images with the help of the software loaded with the images and I also downloaded a few other free softwares that support these images and allow a little manipulation of the images –image enhancements, my knowledge of using satellite images helped. I was seeing lesions but was not sure at all. I downloaded images (examples from different sources) till my hard disk was full and tried to know the meaning of what I was seeing. I called up a colleague, who was with me during MRI to tell him I suspect something is terribly wrong with me. He says I must be mad! Nevertheless he took me seriously and called up the Radiologist to tell him of my fears. In spite of Sunday and the Festival here in India that time, Radiologist comes to the Office and prepares a report and hands it over to my colleague –my colleague Suhas Raje. He gets tense now, the radiologist told him, nothing is confirmed and wished us luck.
Meanwhile Sunday very early, I call my orthopaedic to take an emergency appointment. I tell my wife I may be having cancer! Suhas comes straight to the doctor and we meet there with the Print copies of MRI and the Radiologists Report. I read it … Multiple myeloma? Metastases? Lymphoma? I discovered this over last 4 or 5 hours the previous night and I hardly slept looking like a mad man at these images over and over again, so the shock was not sudden! Yet a tear or two were down on my cheeks as I was still hoping that what I was making of those images could be figment of my imagination and I am no radiologist. Internet is so powerful, the softwares so powerful -if one is mad one can dig out great deal of information. I was unfortunately right!
Suspense continues – what it is:
And that changed me. I had no idea for how long I will live. I knew metastatic disease meant quick death. I think I will come back later again on this.
Markers were ordered and wait for the results was agonising! Each second looked like eternity. In the interim I was treated for pain with opiods (Tramadol, a fully synthetic opiod) but hardly had relief. Meanwhile I start reading about all types of cancers, I quickly find NCI, ACS, and so on.
I get the results from a local lab (Vijaya diagnostic Centre) and a reputed lab in India (Ranbaxy, Bombay). The results agree my PSA is 63 ng/mL as reported by Ranbaxy and 70 ng/mL as reported by the Local lab here. No one expected that to be Prostate –is prostate cancer not an old man disease? Is it not a slow growing harmless malignancy, when people die with it rather than due to it? But here I was symptomless till secondary sites started giving me pain which progressed to unbearable kind. And here I was diagnosed with Prostate cancer with distant skeletal metastasis and lymph node involvement. My cancer as I feared was Stage –IV, I learnt from Internet that the stage is M1b, on TNM system. Biopsy handed out a Gleason score of 4+3.
Soon I had books and papers on Prostate cancer in my little home library. I was madly trying to understand what this means.
And I was put on androgen blockers (bicalutamide) and LhRh (GnRh) analogues to cut out Testosterone.
I continue to live but now tend to recall past often, cry more often, remember people, and more often I express my gratitude to everyone around me who is making my life still a joy to live and enjoy, etc
With kindest Regards,
I will be soon back with my next entry
I start this part of the blog with 1 Oct 2006.
By afternoon I was sure that I have a cancer, I called up my first cousin Sunil who had been one of my closest friends! He was 200 km away from Hyderabad in his place of work and was returning that day. I said I want him to come to my home directly and that I wished to accompany him to his home. He came straight to my home.
I wanted to meet my aunt and wanted to meet another childhood friend, a cousin of my cousin, who stayed a few yards away from my aunt's home. I wanted to meet them as a normal man, I did not disclose this to anyone there at my aunt's home, but couldn't avoid telling this to Sunil. He was sad on learning this and I could see tears in his eyes. I badly wanted to avoid tears that day and feel that I am still normal, and that nothing much has happened to me.
Confirmation from USA:
My brother Praveen is a US citizen and stays in Virginia. He is into his 40s now and somewhat frightened as the prostate cancer tends to run in families. My another cousin and childhood friend, Dr Sanjog Mathur is an orthopaedic specialist and is also a US Citizen and stays in Columbia, Maryland. We played Cricket for the same team and enjoyed each others company very much.
The first thing that I did that Sunday afternoon October 1st, 2006 was to upload MRI and a few X-rays on Net and send the link to my brother with a request to download the files on his computer and take them to Sanjog in Maryland. So the report was independently evaluated by Dr. Sanjog and he confirmed the disease and asked me to be on the bed and move only if absolutely needed and added that the thigh bone of the right leg looks rather bad. He called later to say, "I am being brutal but can't help, you need surgery to fix your femur". He feared that otherwise I may break my bone. This was a shock again, my primary cancer was not yet known. I was happily running about in spite of the pain and now suddenly I was asked to remain in the bed and possibly undergo a surgery. Only in August I went through that hernia repair. Originally a laparoscopic procedure was planned for the hernia repair but they had to open up and do the surgery in an old fashioned way. So the thought of another surgery was upsetting to say the least.
Now friends and relatives and colleagues, cousins and cousins of cousins start visiting me and everyone made me realise the worth of these relations and worth of the society in which we live -the meaning of society. What wonderful feeling that we humans are endowed with! This support and concern for me was overwhelming!
Still in October 2006
Two more surgeries:
And when the PSA results arrived I needed biopsy too. So I had to be in theatre for biopsy. After a few days at home and after a few scans and x-rays to evaluate damage to my femur I was back in the operation theatre for what is called as internal fixation of femur with inter-locking nailing.
First experience of prescription cancer drug - A surprise:
Even before, I went for biopsy my Oncologists ordered Ibandronate 6 mg infusion. I read only one statement on the box which said "to be sold on the prescription of a medical oncologist". That was enough to cause great deal of anxiety! And when I saw the chart of the medicines that were going to be given my worries only compounded. Dexamethasone (powerful steroid) and Granicip (Granisetron, anti-emetic) and Ranitidine (Proton pump-blocker and antihistamine) were the drugs that were ordered to be administered half an hour before the Ibandronate. But then nothing much happened to me. I was quite fine after the dose. That was a pleasant surprise! I went home after the biopsy, in a fair state of mind and started my real search for the meaning of high PSA score. Then I looked for Ibandronate and learnt that it is belongs to a group of drugs called Bisphosphonate and is given to prevent damage to the bones in many situations including the one where androgen blockade is planned. There were some claims that the drug can prevent secondary metastases in the bone.
About Androgen blockers and Hormone analogues and the mood-swings:
These are less painful and do not cause severe side effects that are usually associated with the other anti-cancer drugs. That is what it looks like! Soon almost everyone who takes them will feel flashes of heat in the body that come from nowhere and one wants to literally dip oneself in ice, and body weight starts to climb. The worst thing is that will lead to Type-2 diabetes, especially if one is on steroids also or steroids were given as a part of Ibandronate infusion -like in my case. I succumbed, in spite of doing 3 to 5 km everyday after I recovered enough from surgeries. But the period on bed was enough and this was the result. I have become somewhat moody too. Swinging to past, recollecting the days spent as a child, recollecting days spent in college, early time in job, marriage, etc, etc. I was harping on these things so much that a cousin prompted and wheedled me to write my memoirs instead of just narrating these to everyone. I did write them and they run to about 80 or 90 pages. I will share them too if anyone feels like reading them. My language is patchy and one has to bear with it, as one reads through my memoirs. All I will say here is my childhood was not very happy kind and at times quite traumatic but there were days of joy too.
The book I recommend:
I learnt about biculatamide and other androgen blockers. The lucid book, "Report to the Nation on Prostate Cancer" [can also be downloaded on The Palpable Prostate - page down] by Carroll and others helped me understand how total androgen blockade can be achieved. I strongly recommend this book for the men who unfortunately have prostate cancer, for the families of these men and even for doctors who deal with prostate cancers. Anti-androgens act on the active form of testosterone called dihydrotestosterone while the GnRh (LhRh) analogues or antagonists act on the precursors of the hormone at the pituitary gland level. The initial response of the body to LhRh analogues is to flare-up the production of hormone. So initially anti-androgen is given which bring down the hormone levels and then after about a week or two later LhRh analogues is administered to achieve complete blockade of male hormones in the body.
Another way to achieve this kind of blockade is by surgical removal of testes called bilateral-orchietomy. But, when doctors took a unilateral decision not to do Bilateral Orchiectomy I thought they are keeping the options for intermittent androgen blockade open. However I was mistaken. The intermittent androgen blockade refers to using androgen blockers (which neutralise DIH - dihydrotestosterone) intermittently rather than continuously. If anyone else has better information, they may please share.
In my case androgen blocker bicalutamide (Casodex) was not stopped at all, till my PSA started to rise again. Pre-treatment PSA was 63 ng/mL, with bicalutamide and Goserelin (Zoladex) PSA touched a nadir of 0.62 in June 2007. But in September 2007 it rose to 4.19 and in October 2007 it was 4.82, the progression didn't look too bad. At this juncture bicalutamide was withdrawn.
The Relapse, The Pain and Much More:
This was clear relapse of my disease. But I was looking fine and running around. No one realised that my condition now in September 2007 is worse than it was in October 2006. Colleagues, relatives, friends, everyone thought that I am recovering or have recovered fully. Then they saw me in the bed, they saw me hardly able to eat, they saw me thinned down and were very worried for me and would visit me very often; and now they see me fatter than I was ever in my life, they see me moving around and apparently very happy. But, I became frantic, torn and lost. I started writing mad emails at this period to the childhood friend I mentioned earlier -a cousin of my cousin. Once I was deeply attached to her and things didn't go beyond that. But I continued to depend on her as well as on my cousin Sunil, for some emotional and moral support and I thought I will have that for ever from these people! In fact I called them gods. But, she just vanished thereafter, I will never know why- all I can do is guessing why! Indian Society is very complex, but basic human emotions I believe are same everywhere. I was devastated and felt that world has come to an end for me.
Anyway it was a big jolt as bad as my disease itself. I had to recover from both these happenings and take control. My wife, my children and my brother seem to have understood the meaning of this change in status of my disease -the other thing was a personal loss I could hardly share with anyone else. Yet, I shared this distress with her sister 10 years older to us and found that she has sympathy for me. And I began to see her as angel -this was strange for a 47+ person; especially, when I considered myself all my life as a rationalist and practically above emotions of these kinds. All my life I misunderstood myself, I am as emotional as anyone could be. But, even now I talk of my disease as if that is somebody outside me who is suffering and I am just a narrator of the plight of that person.
Anger perhaps was my only emotion that was visible and mostly the trigger for it was when things got delayed and time was lost. Sometimes, I was angry with my children or wife because they were watching a TV show and as usual the core reason was they were wasting time. I was rarely if ever was angry in office and whenever I was it was again a punctuality issue or a deadline issue. People avoided some works (even some very small things like connecting online printers, Xerox machines, etc) on the plea that it is not in their job chart thereby delaying the completion of the Job -that was just intolerable.
Change in the Status of disease was expected:
A little more in September 2007: Every prostate cancer patient should be prepared for this bad-news, cancer is no longer responding to hormone manipulation. I was expecting a change in status of my disease but not before 3 years. It happened so very fast and was so numbing. I saw death at my door. Now I had no real expectations. I thought I will die within 15 months. This was also predicted by the calculator put up by Memorial Sloan-Kettering Cancer Center.
December 2008: I have crossed 15 months now. My KP Index - measure of physical fitness is still 90+ which means I am almost as good as anybody my age. Fully fit!
Going a little back again:
I was free of symptoms (asymptomatic) till November 2007. Mid November my symptoms returned slowly. As the pain became somewhat harsh I was again put on the usual dose of opiods (on tramadol -a fully synthetic opiod). I had reached a cross road and very critical decision was needed. A decision if that is right will give me some more good life.
I think I will write about that in my third part.
And if you wish to know a little more about me and my work you may try a Google search with three words: Pradeep Raj Groundwater and you can also try these three words Pradeep Raj Hydrogeology - I think 20 of the first 30 results will refer to my work. Just checked 19 of the first 20 results will refer to me!>
My gratitude to Terry, for putting my story up on this blog,
With Kindest Regards,
The blog part 3
Critical and Crucial decision:
December 2007: Critical and crucial decision that added at least one year of very good life so far was on how to palliate the pain which was becoming nasty by the day again. Cancer was taking hold of my life and the reaction of my Oncologist was a little surprising to me, though that was not really incorrect. I have a wonderful relation with my oncologist; he is a great human being -about which I will talk a little more as I go ahead.
At this stage he thought I should go for radiation of painful areas and referred me to a radiation oncologist. And my sessions for radiation were almost fixed up, clearance from health insurance was also sought and that was approved by the insurance company.
I began searching for options when cancer becomes hormone refractory. CanceCare, New York and M.D. Anderson Cancer Center very clearly did not suggest radiation, ACS too did not suggest this, NCCN (National Comprehensive Cancer Network) did not suggest this - I looked at NCI PDQs very, very carefully which did suggest radiation -on the whole radiation appeared to be last resort and not the choice at this juncture.
I consulted another oncologist, he too seemed to veer towards radiation, I consulted two more radiation-oncologists, and one of them said radiation is not needed unless pain is intolerable. I met one more oncologist and he said probably radiation is the right course.
What cemented my decision for not opting for radiation was the response of the doctors from USA. I wrote to my friends and friends of friends who are oncologists in USA. The opinion though not unanimous was clear, the step after hormone manipulation fails is to go for Docetaxel with prednisone. Meanwhile a week or ten days later I go again to my oncologists and wished to tell him all I knew about next course of action. But he again surprises me by the decision that made me very happy. He has changed his decision on his own and he wrote down prescription for Docetaxel. But, still he was reluctant to put me on daily dose of prednisone. I thought I will sort this out with him a little later and meanwhile I prepared myself mentally for Docetaxel.
Horror of Docetaxel that was not:
After reading and seeing people suffer very bad side effects of the disease such as vomiting and diarrhoea, ulcers in the mouth (stomatitis), lowered blood counts, peripheral neuropathy, loss of apetite, alopecia, fall in blood pressure, bradycardia etc, I was afraid really afraid of this treatment but I knew I had no choice. I was particularly worried about vomiting and diarrhoea and dehydration that may occur immediately after infusion or during the infusion. And mouth-sores were another big worry.
I was admitted to hospital on 17 December 2007 for my first tryst with powerful anti-cancer chemotherapy. Tests were good, except for haemoglobin that was around 11. And PSA has reached 14.6 and still rising.
On the day one I was given the usual set of Dexamethasone, Granicip and Ranitidine and then I was given 20 mg infusion of Docetaxel -my oncologist called it a test dose. I was perfectly fine with this dosage. Then next day another 100mg was given. What a pleasant surprise it was; I could walk back up to the hospital lift (elevator) after Docetaxel and nothing at all happened to me. Then I walked out of the gate and got into the Car. I was surprised and thrilled too. I thought I was unlucky to get this disease, unlucky that it progressed so soon to Androgen Independent Prostate Cancer (AIPC), but for the first time in my life I felt luck has favoured me. I escaped all the nasty side effects of the chemotherapy.
For an unlucky man some luck that was how I felt it. In life I wished to be a part of teaching community, to join a college or the university as a faculty. I couldn't get that and it was a big disappointment, and later this disease and a few other events lead me to quickly conclude that luck can never ever favour me. But when one doesn't get what one wants and when that want is a simple wish then one feels very unfortunate and wretched. I felt so. As I said my childhood was not happy kind and early adult life was one of struggle, so that meant I could never believe that someday I am going to be lucky and get what I don't even expect, even if that is going to be for such a short time. I am sick and I forgot that and genuinely felt that I am lucky!
The Prescription for Prednisone:
As a prophylactic measure I was given Filgrastim sold here as Neukine, but popular as Neupogen. Filgrastim is a granulocyte colony-stimulating factor (G-CSF) and is given to improve white blood cell counts. It is thought to prevent side effects like mouth-sores and other infections -obvious as it prevents a decline in body's defence. This was a very good decision for which I am grateful to my oncologist. But prescription for prednisone was not coming. That worried me.
My doctor prescribed Dexamethasone 4 mg twice a day for 4 days and thereafter nothing. Luckily, I was not very bad after the Docetaxel (Taxotere) so I could sit on the net for hours to see if anyone is following the regime that is prescribed for me.
I just couldn't. Yet I thought that practise is somewhat different from theory so I should just take what is prescribed and not worry too much. But then I wanted to know why I was not given the medication the way it should be. I wrote to my oncologist, -an email. And I also suggested to him that if he is worried about my rising blood sugar levels and therefore keeping me away from it, he may revise his opinion and if needed talk to my endocrinologist and put me on insulin - if that becomes necessary but not stop me from prednisone. That did him in and I had prednisone 5 mg twice a day prescribed for me.
Here at this time I felt that my oncologist is a great man, a wonderful human being so willing and so open. I had talked to other doctors and oncologists too, but this man is just wonderful. He does not talk stories, is serious too but I seem to have developed such wonderful relation with him that I think would have been difficult with any other oncologist.
January 2008: But when a month later when my PSA continued its upward march I thought Docetaxel is not doing anything and I must get ready to bid adieu to this Stage and was worried about the pain and worried about my two sweet little daughters and I got nightmares thinking of my wife, who should live for a long time rather alone in the house that she brought and has so many dreams still to go, which she would have liked fulfilled from this little house but a big home for us. I go to Kettering again; the calculator put up by Memorial Sloan-Kettering Cancer Center suggested I had 15 months in September 2007. I lost faith in it. It should give the rider - if Docetaxel is working then the life is for 15 months if not for whatever and so on. PSA touched 19.28 ng/ml on 24 December a week after the chemotherapy, and really did not show a climb down till March 2008 though it was not steadily climbing up it was fluctuating. It was 7.55 on 7 Feb 08, but was 22 ng/mL on 6 March 08. After this it started to come down and that was a big relief.
Symptoms and PSA
June 2008: My PSA did rise after that but then that story is the topic of my next blog. But before that I wish to tell that the site put up by Terry is the best that one can think of.
I have been reading a few other stories on this site and it occurred to me that I didn't talk about the prostate itself. The size was normal (no prostatomegaly) no other symptoms that would suggest that anything is wrong with my prostate. Nature can deceive and we have to just bow down!
The blog part 4
June 2008 : The saga continues:
I am now in June 2008 I have spent one year and eight months as a prostate cancer patient. But, critically a year with AIPC. It looks as if I was for life prostate cancer patient. Docetaxel and prednisone gives a median survival of 22 months. I hope to go beyond it. But how?
PSA climb began, almost immediately after Docetaxel was stopped in April 2008 after 7 infusions of 120 mg. This was at a dose somewhat less than 75mg/m2 of body surface area and much less than the recommended 9 to 10 doses. What is very important is that NHS (www.nice.org.uk/TA101) does not recommend repeating the cycle of doses. So once it is done with then the next phase is to go for radiation, go for Estramustine, opiods, more opiods, opiates and wait without hope. Did they not tell that metastatic prostate cancer is incurable?
What the alternative medicine speaks:
Yes, everyone said that the metastatic prostate cancer is incurable, except the Homeopaths, the Naturopath, the Herbalist, the Chiropractic, the Acupuncturists, the Tantrics (Exorcists) and others in this clan - like those doing distant healings. So here I stand, I have time to go to these alternative systems and see if I can survive - well I do not mean to and I won't advise it even in my wildest dream.
Journey continues with Docetaxel:
So when the PSA climbed to 16.8 and I felt the pain again in June, my doctor did not wait for anything else. He simply decided that I can go on with another round of Docetaxel regime I was wanting it anyway -how many? Perhaps we both didn't know. In retrospect that was again a great decision. I was doing quite well and had high KP index any fall in this index would mean my ability to withstand chemotherapy also falls. So I was back to the routine that was mine from 17 December 2007 to 18 April 2008 - a period in which I had 7 rounds of Docetaxel.
I was given another 7 rounds! Total of 14 with a break of 2 months in between. I don't know if this is the way it should be. But it was. My last dose of Docetaxel was on 30 October 2008. My PSA was down to 3.8 on October 5 and was 3.55 on November 29, 2008. I continue to be on Goserelin (LhRh analogue), Prednisone and Ibandronate.
When last evaluated my PSA was 4.34 on 26 December 2008. The trend has again reversed. I keep my fingers crossed.
I wish to know if anyone took more ? I queried ACS their response was "Sorry, Pradeep! No idea what the maximum number is!"
I reach January 2009 - the present
Yet another cross roads and is the journey with Docetaxel ends now?
What should I do next? I do not know. Satraplatin looks promising. I hope it becomes available before it is too late for me. That should give me another year.
Meanwhile, I hope if need be I will go on Docetaxel again - maybe 7 more or 10 more. That means 7 x 21 = 144 days. And add to that 2 months of quiescence or remission I should have about 200 days of life. But, if Docetaxel fails now -what? Estramustine + Docetaxel may help. I do not know.
Reaching the end of the Journey, but did I travel enough?
If Estramustine + Docetaxel also does not work what - do I wait for death? Any help, anyone knows anything else. No I do not wish any remedies from alternative medicines please.
And I am damn afraid of looking at February, March, April...
Yet hoping to survive 2009 and greet you and others another New Year 2010. My family, the two sweet siblings, cousins, cousins of cousins, friends, colleagues, fellow researchers and particularly my two daughters (20 and 18) and -recent addition to my family my son-in-law -would love me here and want me here.
I assure you all that I will keep you posted of the developments till I can sit on the computer. And I think I may have missed many things -maybe someday I will post those as snippets!
My gratitude to you Terry, for putting my story up on this blog and for your wonderful site, that YANANOW surely is. Had I known it a little earlier I would have been benefited a little more; but I am happy I have discovered you and the site now, thanks to another YANA Mentor Dr Kishsan Rao of my city Hyderabad
My gratitude to you Terry for putting my story up on this blog,
With Kindest Regards,
After those holidays in second week of January I am back to work. Did I enjoy? I cannot say that. I was waiting for the results of PSA -which has gone up as expected and now is 5.29 and fresh mets show up in isotope bonescan. These things all said and done spoil everything.
There are three factors now:
1. Increase in PSA,
2. New hot spot and
3. An increase in ALP
All these point to active cancer in the body.
I had a consultation with my oncologist. He feels I should go with Estramustine and Prednisone. Since I am not too uncomfortable at present, I feel this is justified and I hope this combination slows down the progress of the disease. I hope to tolerate this torrent as well as I did docetaxel. Though as a precaution, he gave an anti-emetic too.
I will start this regime after the office tomorrow. Estramustine is very costly (each day 3 tablets -each tablet around Rs 200/-) and at present not covered under my insurance.
At present my PSA shows a rising trend. I am fine going to office.
My Oncologist has put me on Estramustine at 140 mg x 3 /day. This is half the usual dose. Another general medical practitioner here feels that this drug is very toxic and hence my Oncologist should not have prescribed it at all at this Stage, especially as I was responding to the treatment (Docetaxel so well). But, I felt good, as I thought at this time (when I am asymptomatic) something different is being tried to put a stop on growth of these mad cells.
So that is my situation at the moment. Next 20 days or so would tell me whether this drug is effective or not and how toxic it's affect on my body. Then I think I will have to decide, sitting with my Oncologist.
Later - February 25 2009:
My PSA now is 4.73 down from 5.29 (19 Jan 09). I was on Estramustine for 3 weeks and the dose was 140 mg x 3 per day. I have gynecomastia – not very bad, though. I am tending to tire more quickly, but otherwise just fine, as ever. A little concern is low haemoglobin -9.8 now and could be the reason why I am tending to tire. It was 11.8 before I went on Estramustine.
I am reasonably good. My haemoglobin had dipped to a little around 9, that caused nausea and head-ache. I was asked to go on with iron supplements only. Now much better but tiring and not really able to sit through and concentrate for long. However, not bad otherwise – no physical discomfort as such.
I am doing well, but for occasional feeling of tiredness and muscle pain. My haemoglobin has improved a bit and is around 11, but albumin has dipped to less than normal.
PSA had jumped to 7.34 last month that worried me but then is down to 6.6. tested on 21 Apr 09 (same lab Ranbaxy, and same technique). I am on Estramustine but the dose is half the recommended level. My oncologist feels even this I should stop for a week and allow the body to recover back and then restart. So I am on a week's drug holiday.
I am working and enjoying the work, trying to write a few research papers for International Conference of Hydrogeologists (IAH) which has come for the third time to an Asian Country in 37 years. And the best part is it is in my home town and is slated between 6th and 12th of this September. My dream was to participate in at least one conference of IAH, but when I fell sick, I sort of thought I will never be getting that kind of an opportunity. But, here is my luck so different from what I thought it is...
I know I am writing after a long time.
I am quite fine right now –on Estramustine, with PSA hovering around 7 or 8, but the worry is I have spinal chord compression; my doctors feel that it is due to the cancer being hard on spine. I wonder if I am going to go down from now, or will there be another recovery?
The pain is sometime so bad that I am forced to take Morphine (which my oncologist prescribed so nonchalantly and without batting an eyelid! Maybe that is the way of the doctors. I was also given a dose-pack of prednisolone –where they started with 24 mg methyl prednisolone and slowly brought it down to 4 mg. But I was not at all comfortable with 4 mg so they made it to 10 mg prednisone a day. That is soothing my nerves to some extent. But even then I get pain -if I try to sit for longish time say writing something on PC, or walking a little more than 10 minutes or even just sitting. I tried taking a little more of Prednisone that is go for 15 mg instead of 10, but that is not much of a help once the pain starts I have to go for pain-killers and end up with Morphine if the pain is unbearable.
That is the story. Perhaps if this persists my doctors will try an epidural methyl prednisone or even surgery to fix the spine. But I hope I will recover soon.
I am quite good now in fact almost back to where I was around say December 2008. Docetaxel was re-started on 16 July 2009 along with prednisone, and I think it did the trick -it is working! I am so happy! But, I am not very sure of this how that can be explained -andI have a feeling maybe the pain was caused by some kind of growth, (very small growth) which was pinching the nerves in the spine. So all I can guess is that this little tumour (bony??) which was troubling me is gone now. I do not know how it can happen. But it can happen, indeed!
I quote from MyoClinic:
"Chemotherapy. A standard treatment for many types of cancer, chemotherapy hasn't proved beneficial for most spinal tumors. However, there may be exceptions. Your doctor can determine whether chemotherapy might be beneficial for you, either alone or in combination with radiation therapy". And
"Other drugs. Because surgery and radiation therapy as well as tumors themselves can cause inflammation inside the spinal cord, doctors sometimes prescribe corticosteroids to reduce the swelling, either following surgery or during radiation treatments. Although corticosteroids reduce inflammation, they are usually used for short periods only to avoid such serious side effects as osteoporosis, high blood pressure, diabetes and an increased susceptibility to infection".
I have so far 6 sessions of Docetaxel (equivalent to 3 cycles of 21 days and it is working, that means according to this study, I am in one of the 5% of the of the patients who are fit to take this drug a third time around; and after 2 earlier full cycles and among 3% who respond. I quote the relevant parts of this study here:
"...26 (56%) patients achieved a PSA response of > 50%, another ten (22%) patients of up to 50%; and ten (22%) patients progressed despite the reintroduction of the docetaxel. The median overall survival of the whole cohort calculated from the first docetaxel application was sixteen months. Tolerance, toxicity and general condition were crucial for the administration of a second cycle (n = 18); in contrast, age or the degree of the PSA decline in cycle 1 did not seem to be of importance. The median overall survival of all patients who received at least two cycles were 35 months; and 13 of 18 patients achieved a biochemical response in cycle 2. Toxicity did not rise significantly. Five patients were given a third docetaxel cycle, three of whom responded".
So I am going to have a great life till next 3 months (at least); and later I hope that there will be something (if need be) that will be a source of panacea for me. I am tolerating it quite well. However, I have a taste change that is lasting 3 to 5 days and I do not feel like eating regular food at all. I go for home made bread with tea! Lots of fruits and partly cooked vegetables, rather hardly cooked vegetables. Occasionally –after the taste returns; I am eating red-meat, though everyone tells that it is not all good. But then do what you like is also said by many. So this little indulgence, it is really little indulgence because when we eat meat it hardly exceeds 50 grams and very rarely it is around 100 gm. So I think it is excusable! But lot of bread rich in carbohydrates is probably not so excusable, especially when I am diabetic. So I do close monitoring of sugar levels, now I have restarted walking and strolling around places where I can find birds and butterflies, which are such a joy to watch.
And my presentations at the Conference of International Association of Hydrogeologists (IAH), at my home town went well. We had a large number of participants, coming from 62 countries! It was a great show, I enjoyed it thoroughly. Professor Stephen Foster is the immediate past president of IAH and I was associated with him earlier, as he also heads World Bank Groundwater team that helps us here in India. We had at personal level (one to one meetings) huge exchange of information and ideas, which he acknowledged in his key note address in one of the sessions here, which pleased me very much. I could acknowledge his contribution and help, when my turn came a little later.
Thanks again for the support.
My condition is bad. I wrote earlier that Docetaxel is working, but about a month or two back it stopped working and my tumours everywhere in the bones started to simply run amuck.
I first got an inkling of this situation, when my left eye suddenly refused to see. I thought retina may be the problem, since I am diabetic, on steroids and harsh Chemotherapy too. But an emergency CT scan and MRI Showed that tumour on Sphenoid bone has grown madly and is pressing lateral rectus muscle and optic nerve –all parts of the structure of the eye.
Oh! That not only needed emergency treatment, but also sort of broke me again, and badly, this was very harsh on me, very, very harsh indeed! Immediately 32 mg of Dexamethasone was given followed by a gram of Prednisone –followed by Image Guided Radiation Therapy. My vision is restored by about 60 to 70 %. But mets in other parts are running, as I said, berserk, and I am put on steroids and narcotic class medication. There is a plan to put me on Ixempra or Vinorelbine to see if they can arrest the disease to some extent.
The way things are going now, I do not see I can go beyond 6 months in 2010. If you do not get a communication from me in July you can assume that I am on the way out or have already gone! This is harsh, but this is the way this nasty disease goes. I think younger people suffer badly and older ones manage with ADT for long, and rarely they go to docetaxel, yet they survive for 5, 10 or 20 years, if there is any data perhaps someone can tell if my observation is right.
Yet, I have hope if Vinorelbine works I may live on to 2011, if Ixempra works I may even see 2012 and by then are we not going to have that miracle cure for the cancer? Then I have to allow my liver and kidneys to recover from all the harsh treatment they got, and then I will live on to ripe old age!
Will I at that time not enjoy all the newer technology, newer science, newer medicine, etc, etc, while continuing to enjoy my favourite old music of 1970s and 1980s ABBAs Olivia Newton Johns, Boney-Ms, etc, etc and the great native songs of 50s, 60s 70s and some even of 40s and older too! Well, well, well!!!!!
Thanks again for the support,
With Kind Regards,
I re-read my own entry here and I was surprised that even in 2009 I was thinking that I may not be there to say hello to 2010, just as I am now saying I may not be there to greet 2011! But for the first time, I feel that I am drained, have hardly the kind of energy that I had in 2008. In contrast 2009 was mixed, sometimes I was good, but sometimes I had to endure pain. But I was hungry, eating well, running about too and contributing in my own small ways to the office and to the science!
2010 starts badly for me I have lost 5 kg in last couple of months, eating with difficulty and do not feel like working at all. Therefore I should say that Cancer remains the worst disease that one can get! Advanced cancer is not just worst but is numbing too! Day one you know that life is shortened, and also that one day the treatment stops working and that pain becomes unbearable; and the worst part is that the treatment itself is harsh and kills the body as well as the mind! And that there is no respite perhaps till one dies!
My radiation sessions are put to a stop. And maybe till 18th of this month I won't have anything. And on 18th I will be in Global Hospital for a new class of chemotherapy - most likely Vinorelbine. But let me add that I am on narcotic class of medications to soothe my pain.
I am sorry I am not able to respond to the emails, sometimes even the phone calls. I am very low on energy, getting up from my bed (or even a chair) is a big-big effort now. Radiation of long bones of the leg has sapped me and since then, I am only hoping that some miracle can still happen and pull me through.
In between, I was on vinorelbine 30 mg / 14 day. I took 6 rounds. That seems to have held the disease to some extent. But now my doctors feel I am too weak to continue and that is the end of vinorelbine. My PSA table with vinorelbine:
4-Mar-10 25.90 5
18-Mar-10 40.70 6
At present I am not asymptomatic, all tumours did not seem to have responded to vinorelbine, my eye is deteriorating –Ct scan revealed some growth in sphenoid again and it is pressing lateral rectus muscle and is not far from optic nerve, I have pain in the ribs (lower ribs), etc.
That's it, not much energy to go on.
Bye, bye Thanks Terry
I received an e-mail from his daughter, who wrote:
My father became paralyzed from waist down in late September 2010.
His health deteriorated steadily this past few months; he was hospitalized on 16th January, 2011. He contracted pneumonia in the second week of February this year. He died on 20th February, 2011 of a cardiac arrest.
We are consoled that he is not in pain anymore.
Pradeep was a keen photographer and shared some of his birdlife pictures and thoughts here on a pdf file - Pradeep On Nature