Situation at August 2018

This is probably the second last posting on this blog.  It is amazing to think that it commenced in 2012 after a terrifying diagnosis, so bluntly delivered – There have been ups and downs, but mostly ups.  Given how little joined-up information was available when my treatment started, the blog was intended to share experience and to offer support for others in this predicament.

So where to start?  Perhaps I should first explain why I think that this is the second last posting.  I will then summarise matters since the last posting and as usual, close with a listing of some the latest developments in cancer research.

Some time ago I reported the outcome of a bone scan, where there was evidence of osteoporosis, an outcome of prolonged use of Zoladex implants.  On 23 October I will have an appointment with my fantastic oncologist who hopefully will arrange the next Dexascan.  Since the last scan I have been assiduous about going to the gym and doing weight training in addition to cardio exercises. My Fitbit records a resting heart-rate as low as 54bpm which is not bad for someone who is 72 years old.  If the effects of these efforts are reflected in improved bone density, then I will be very happy to report the results and leave the blog at that point.

In my previous posting I mentioned coming off Zoladex and pondered about a second adolescence.  Well, everything has happened a lot slower than I expected and the changes have been a lot less dramatic than they were 58 years ago. That said, there have been effects which anyone coming off the hormones should be aware of.  Irritation of the breasts was not unexpected with nipples that couldn’t decide if they were ‘innies’ or ‘outies’.  However, I suddenly developed one very sore breast which felt very lumpy.  My GP thought that there might be a cyst and referred me to the hospital where the specialist diagnosed gynaecomastia, which has since been confirmed by a breast scan. He said that this was not unusual amongst men coming off hormone treatment.  It seems that radiotherapy has significantly reduced the production of testosterone, but not oestrogen and the absence of a balance of these which occurs naturally in adolescing males caused the problem.  In severe cases of discomfort gynaecomastia can be treated with the same chemo drugs that are used for breast cancer.  However, the pain has subsided significantly, but at least I know what it is.

In previous blogs I mentioned a bowel problem that has been a serious inconvenience since the end of radiotherapy.  In May a surgeon examined what was thought to be a large polyp, but turned out to be a mucosal prolapse, which he repaired. Having to wear deep-vein thrombosis compression stockings for a few weeks afterwards was a nuisance, but the problems that I had endured for five years are now a thing of the past.

And finally, my gleanings from latest news on developments in cancer research.  Previously I have provided a commentary, but this time I think that I will just let the URLs speak for themselves

• ‘Handful of changes’ make cancer –http://www.bbc.co.uk/news/health-41644020

 

• Genetically engineered probiotics to turn vegetables into cancer-killing agents http://flip.it/wKT9IF

 

• Limiting dietary fat could help prevent prostate cancer’s fatal metastatic progression http://flip.it/Zq3vWM

 

• Research finds ‘Achilles heel’ for aggressive prostate cancer: Treatment-resistant cancers self-destruct when exposed to experimental drug http://flip.it/T1rji_

 

• Hormone vs. Non-Hormone Therapies for Advanced Prostate Cancer http://flip.it/ArtGNh

 

• Physician Claims He Can Kill Cancer With Unusual Innovation: Arsenic Poison http://flip.it/_0EoEp

 

• Antifungal drug kills dormant colorectal cancer cells http://flip.it/dXTs3q

 

• Deadly brain tumours could be heated up by MRI scanners until they die in groundbreaking treatment http://flip.it/K.Ux7V

 

• Black men are left out of cancer trials because of their biology http://flip.it/xiqk.Q

 

• Radiotherapy trial could significantly cut the number of visits for men with prostate cancerhttp://www.rte.ie/news/health/2018/0808/983732-prostate-cancer/

Progress as at October 2017

It has been a very long time since I last posted to this blog, but last week I had my six monthly meeting with the oncologist.  So, this will be a relatively long posting covering the meeting with the oncologist, coming off Zoladex, stopping taking Fellopidine (a blood pressure treatment), progress at the gym, some observations on apricot kernels etc and finally some thoughts on reports of progress in cancer treatment.

One never approaches a meeting with the oncologist without some trepidation, even if she is a stunner with a fantastic personality.  I swear that even if she had to impart bad news we would be able to have a laugh. Nevertheless, in the run-up period between the blood test and the consultation every twitch or twinge is interpreted as a possible bad sign.  It is only natural to worry at this stage since it is twelve months since I had my last three month duration Zoladex implant. Things seem to have been changing much slower than I would have thought and I still get hot flushes from time to time. “But you were five years on the hormones” said the oncologist who assured me that the PSA count was still below the detectable limit and then set the next appointment for April 2018. Even as I was in the hospital waiting area, sitting amongst people whose cancer situation appeared much worse than anything that I had experienced, one asked “Well have you beaten it?” “Heavens No!” I responded “It’s simply so-far-so-good”

Zoladex had certainly bought on osteoporosis and I was given the option of medication or heavy gym activity.  As you can imagine I opted for the latter and feel ever so much better for it.  Both my wife and I try to go three times a week, which is not always possible given my busy pensioner’s schedule. It seems to do us immense good and no obvious harm.  I say this because at first I was terrified by the heart-rate monitor on the tread-mills when going fast uphill seemed to indicate that I was pumping away at 165bpm, which is not the sort of thing that a 71 year old thinks is good for them.  So, for my birthday in July I got a Fitbit Alta HR and have been glued to it ever since.  It was very reassuring at the gym, but it also monitors my sleep.  Okay, so I do wake quite often in the middle of the night and by spending time trying to fool the Fitbit into believing that I am not awake, I invariably drift back to sleep. It also monitors my resting heart-rate and it was this that prompted me to suggest to my GP that I come off the Fellopidine blood-pressure tablets. I was convinced for a variety of reasons that they were not agreeing with me and again I am much happier using the gym to control my blood-pressure.

In earlier postings I mentioned that radiotherapy damage appeared to have had an effect on my bowel, in particular the fact that I might be walking along perfectly happy and then get a sudden uncontrollable urge. Well, at long last my GP took notice and referred me to a gastro-intestinal clinic. The summons to the hospital, when it came terrified me. It was at very short notice and demanded that I appear at 3pm on a Saturday. I arrived, logged in and slowly turned the door-handle of the waiting room. It was heaving with people. “So I am not a special case – whew!” The hospital were clearing a backlog. Anyway, the flexible probe revealed an inflammatory polyp, which the doctor present assured me was most likely the cause of my problems. So, now, there is a further referral, to a colo-rectal surgeon late in November. Here’s hoping for no further complications. And to raise a smile you might like to have a look at

https://www.youtube.com/watch?v=W2gABYTmXos

 

Next on the menu is my favourite subject of alternative treatments, in particular apricot kernels (in the absence of a ready supply of manioc). I have written on this before and it certainly appears to have attracted a lot of attention. In this posting I will be adding some caveats.  A report in Science Alert cites that “A man got cyanide poisoning from taking apricot kernel extract to prevent cancer ” (http://flip.it/_sT2_D). It had a subtitle “DIY medicine can have serious consequences” which conveniently ignores the fact that chemo-therapy treatment can also have serious consequences!  Nevertheless, there are circumstances where it might be advisable to disclose the use of alternative treatments to medical practitioners and follow their guidance if undergoing treatment such as that described here. The other, related matter came to my notice in a serendipitous way. While talking with a fellow engineer about the presentation of statistical data he advised me to look at YouTube videos featuring Hans Rösling and indeed they were fascinating. Next a Wikipedia search (https://en.wikipedia.org/wiki/Hans_Rosling) and in there I found reference to his PhD which was a summary of his studies of Konzo, a paralytic disease which is prevalent in those areas of the world where a large part of the diet is based on manioc, but lacking in protein, particularly sulphur amino acids which are essential for the detoxification in the body of cyanide to thiocyanate, which is removed in the urine. So, now you have been warned.

And finally to a round-up of cancer related treatments that have caught my eye since my last posting.

The first is effectively concerned with alternative treatments for prostate cancer

“An apple peel compound can halt the growth of prostate cancer cells when combined with compounds from red grapes or turmeric.” https://www.medicalnewstoday.com/articles/317977.php

The next is a prostate treatment drug that seems to offer hope to men even at a late stage http://www.thejournal.ie/cancer-study-prostate-3425784-Jun2017/

The last two are relevant to other forms of cancer, but give some idea of how things are developing

https://flipboard.com/@flipboard/-how-to-fight-cancer-when-cancer-fights-/f-eebd26ba41%2Ftheatlantic.com

https://flipboard.com/@flipboard/-how-to-fight-cancer-when-cancer-fights-/f-eebd26ba41%2Ftheatlantic.com

So, here’s looking forward to another six months of well-being

Greeting 2017

To all who have been following this blog during the last five years I would like to send best wishes for the New Year.  There have been many fantastic advances in the study of cancer during 2016, some of them relating to prostate cancer.  Let us hope that progress continues.  If each one of use can manage to stay alive long enough, then there will be a cure.

I have not added anything to the blog for quite some time.  It gets a bit boring when yet another post says “Have been to see the oncologist.  PSA remains below the detectible limit.”  However, the time is now right for a new post.  Having been on Zoladex for five years I have decided that it is time to come off it and have had my last (three month) implant on 31 October.  I have become quite comfortable with being the equivalent of a post-menopausal female and even the frequency and intensity of hot flushes have dwindled.  The effect of the implant should start to die off at the end of January and then, I suppose that I will have to face a second adolescence.  It will be yet another interesting experience, which I propose logging, in case it helps others.

Immunotherapy, Brachytherapy and personal progress

I have often made the observation that if you can only survive long enough then there will be a cure for whatever cancer you have.   We now have the announcement http://www.bbc.co.uk/news/health-35718491 that the ‘Achilles Heel’ of cancer has been identified. There appears to be some wonderful results using immunotherapy, but the downside is cited as the cost for individually tailored treatments. However, I would ask “What was the cost of doing a DNA test when it was first introduced? Can we not expect similar cost reductions if this treatment lives up to its initial promises”?”

 

I have recently had correspondence with a friend who has undergone Brachytherapy for prostate cancer. The main treatment involved injecting 125 radio-active pellets into the prostrate with a half life of around 60 days. It sounds a lot better than conventional radio-therapy, but his personal experiences have left me wondering. He reports:

“It started early January with the “re-bore”. This went well using a local epidural anaesthetic with a single overnight stay. My recollection of the period Jan to April is a bit hazy, but I think I was urinating OK but with a much reduced pressure. At the end of April I had the Brachytherapy with another single night stay. Six  of us post-operatives were in the same ward and each given a plastic jug to fill with urine when we were in need. The nurse then measured the residue in the bladder and if less than 100 ml we were released. All night long, sleep was interrupted by loud fillings of jugs with the consequent activity with the nurse. My turn didn’t come until quite late – around 6.00 am I think, and my residue was marginal but accepted. I returned home later that day, but from then on had difficulty urinating, managing less than 100 ml a time. PSA measurements taken in May and August recorded vanishingly low results, so at least the cancer was no longer a problem. Chronology is a bit hazy now, but sometime in May I was admitted to yet another hospital A&E late at night and fitted with a catheter which stayed in a month by which time it had got quite uncomfortable. I went to the hospital where I had had the brachytherapy for the removal of the catheter and again only just passed the “pee-out” parade. I was in constant touch with the staff there and they kept reassuring me that things would improve, but would likely get worse before they got better. This message I took too seriously. I remember having around 2 weeks where I had to go to the toilet every 20 minutes of so, day and night, often not managing to pass anything. I kept detailed records for a 24 hour period and peed about a litre in some 50 or more visits. This period was not made easier by suffering chronic constipation at the same time. For a while I was using incontinence pads as extra insurance. Eventually I was in such discomfort that I went to the catheter A&E again. I remember (only just!) being less than rational because of a urine infection during this period. They fitted me with another catheter which stayed in a week until removal. This time I failed the “pee-out” test and was taught to use DIY catheters I could insert as and when needed for a one-off usage. These I was using up to three time a day. Mid August, to the brachytherapy hospital again to have the urethra stretched in the prostrate, since when I have managed to urinate successfully but with hardly any pressure. At a regular review (now three-monthly) at that hospital at the end of September I was advised to use one of the catheters once a week to keep the urethra open. This I am still doing. “

All sounds very uncomfortable.

 

In the past I have also commented on how one can witness progress even long after radiotherapy. I was really lucky with how few side effects I suffered at the time. In particular, no bowel bleeding. However, ever since I have had what I refer to as an Irritating Bowel Syndrome.  Transit is relatively slow, but after radiotherapy damage to the relevant nerves meant that any solid material arriving at the colon wanted out NOW!  This was a real pain when I would go walking with my wife.  It did not affect me if I was walking at a brisk pace, but if I was ambling along at her pace it seemed to stimulate intestinal spasms and I would have to make a run for it or find a bush.  Strange to say, it did not affect me during a recent holiday.  In anticipation of trouble, I developed an early morning routine of frequent toilet visits and tummy rippling exercises which meant that the innards were completely empty by the time we went out.  I know that it has taken four years to learn how to do this (without any advice from anyone), but it has been a terrific relief both to me and my wife.

 

 

A brief summary and some observations

For the benefit of anyone who arrives at this blog and wonders what it is about let me explain. While I think that the UK NHS are absolutely wonderful, there is frequently a significant lack of information. So, you the person who has just been diagnosed with prostate cancer is now in trepidation, wondering what you are about to face. This blog attempts to give you one person’s view from the very beginning right until now, when one can still be surprised by feeling better that one did even a month ago.

I used to make meticulous record of meetings with my oncologist. It is perhaps a measure of how I am now feeling that the blood test and consultation were some time ago. PSA was fine and the oncologist did not argue too much when I insisted that I should remain on the hormone implants for one more year, in spite of the side effects.  I plan to come off Zoladex after a total of five years.

So now, the blog largely comprises a collection of observations about the current state of cancer research, but I really must start by applauding a young man from New Zealand. The online report said

“A New Zealand schoolboy who was diagnosed with an aggressive form of cancer in his final year at school has delivered an emotional valedictory speech from his hospital wheelchair, the recording of which has gone viral. Eighteen-year-old Jake Bailey, a senior monitor at Christchurch Boys’ high sch… http://flip.it/1EqpJ”

I know how he feels and I wish him luck.

There was an item in the Times on 4 November 2015 suggesting that intensive radiotherapy would benefit prostate patients and cut costs. They are suggesting that it should now be given over 20 days as opposed to 37 days. It will certainly cut costs, but I seriously wonder about the side effects on patients.  37 was chosen as a number that would ensure that tumour tissue got a good pasting while adjacent healthy tissue would not suffer unduly. Certainly, when I had my 37 sessions I was able to cycle to and from the hospital every day and saw it as an important part of my contribution to the treatment. It was only in the last week that things got really tough, but I did it.  20 sessions of intensive radiotherapy seems to me to be much closer to the damage level.  I wonder if I would have been able to maintain such an active regime if I had undergone this treatment? I also wonder if I would have as few long-term side effects as I now have?

I am convinced that even if things are not so good then we only have to hang on long enough to be able to benefit from major break-throughs. Here are two examples that I have gleaned:

“British doctors are developing a revolutionary new therapy for cancer and associated conditions based on the use of high-powered beams of ultrasound. The researchers – working at the Institute of Cancer Research (ICR), at the Royal Marsden hospital in Sutton, outside London – have already used th… http://flip.it/GgyO0 ”

and

‘Suicide’ gene therapy kills prostate cancer cells – http://www.bbc.co.uk/news/health-35072747

Season’s Greetings to all.

 

Some more observations

In the new structure of the WordPress system I am reminded how long it is since I last wrote a blog entry. Well, what can I write when I feel well, indeed, probably feel better than I did for a year or more before my prostate cancer diagnosis? That said, I appear to have made a discovery and it should be a cautionary tale for anyone who is reading the ‘tea-leaves’ of their health and maybe attributing symptoms to the wrong reason.  In my 11 January contribution I mentioned tenesmus, the urgent need to defecate, sometimes at the most inappropriate moment.  In the 8 April updateI mentioned that I had discussed the matter with the oncologist who suggested that I try Kegel exercises.  I was still worried, but relieved when the results of a faecal occult blood test came back negative – I did not have bowel cancer, at least on this occasion. Anyway, while having the latest Zoladex implant (yes, I am still on the hormones) my GP took my blood pressure, which is always high.  She decided that I should go on 5mg per day of Felopidine to add to the 4mg per day of Perindopril (so no more grapefruit or grapefruit juice).  The new regime has brought down my blood pressure, but as if by magic, it appears to have cured the bowel problem.  I can now go out for a walk without worrying about whether I might get a sudden urge.

In a previous blog I mentioned about a work colleague who died from prostate cancer last summer. One of his students has now produced a detailed account of his pioneering work (http://blogs.plos.org/biologue/2015/07/08/j-andrew-bangham-1947-2014-enterprising-scientist-who-broke-new-ground-in-computational-biology-and-image-analysis/).

I have been edging towards writing this set of observations ever since I encountered a colleague who was being treated for bladder cancer. He was telling me that they were infecting him with a benign form of tuberculosis bacterium to treat his condition. It seems strange, but BCG appears to trigger the immune system into attacking the tumour http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Bladder/Treatingearly/BCGtreatment.aspx

It is amazing what is being developed, and indeed, we live in hope that there may be more advances by the time we need further medical attention. Two examples that I have noticed in the media include:

The plant that can kill and cure – http://www.bbc.co.uk/news/magazine-33506081

and

‘Softener’ may help kill cancers – http://www.bbc.co.uk/news/health-33509814

Various observations

Recently encountered a person collecting for the ‘Big-C’ charity outside a garden centre.  We exchanged medical pleasantries and she said “Yes, we are the survivors.”  She was not to know that underneath the extrovert facade, there is a very cautious person and I felt obliged to correct her “We are survivors up to now.” However, I have just had another blood test and meeting with the oncologist.  Am now signed off for another six months.  While there we discussed the collateral damage which radiotherapy had inflicted on the bowel and I was advised to do Kegel exercises.  I think that he was surprised when I told him that I already do this to relieve the boredom when I am driving long distances.

Came across an article in The Journal.ie Tips to keep your mental health in check while dealing with cancer http://jrnl.ie/2012823 It has been issued by The Psychological Society of Ireland and seems to deal with significant issues. In the early stages following diagnosis, loss of sleep as I pondered the darkest possibilities did not help my mental or physical well-being.

Have hammered on about the benefits of proton beam therapy in earlier postings. It took the parents of five year old Ashya King to kick butt and force change. The UK is about to get three proton beam units, but when these will be used for prostate cancer is quite unclear.

Proton Beam Therapy

Shortly after my diagnosis in January 2012 I went on-line to see if I could get a holistic picture of my situation instead of the piece-meal information that had been passed to me by the various -ists that I had encountered. I was much encouraged by a blog by Peter Najar (http://panajar.blogspot.co.uk/). The writer described his experiences of being treated for prostate cancer using proton beam therapy. While gearing up for radiotherapy I mentioned proton beam treatment to a young radiographer whose response was curt “There is nothing better than what we now have.” This was the statement of a closed mind and there was no point in further discussion.

So, it is now interesting to see on Sky News “NHS Quizzed Over Proton Beam Cancer Therapy”

http://news.sky.com/story/1438059/nhs-quizzed-over-proton-beam-cancer-therapy

It would appear that the UK NHS has set aside £250m to send patients abroad (mostly the US) for this treatment.

The truth is that the use of proton beams should be preferred as a method of avoiding collateral damage. An X-ray beam goes right through the subject, hitting the tumour in passing. As the beam is rotated the tumour is irradiated all the time, while other tissue experiences lesser doses.

Now, in the case of high energy particles, such as protons the beam passes through tissue until it reaches what is called “the stopping distance.” Nothing emerges from the other side. Thus it should be possible to dump most of the energy of the beam in the vicinity of a tumour with significantly less collateral damage.

It is heartening to read that the UK will have two such machines in operation by 2018, but why has it taken so long? There was high profile press coverage of infant Ashya King being taken out of the hands of the NHS by his parents and undergoing proton beam treatment in Prague. Certainly the advantage of this technique for the treatment of hard-to-access brain tumours is obvious. In the case of prostate cancer, it is important to avoid damage to the bowel. So, one wonders how long it will be before this treatment will be more widely available within the NHS?

Information from a surprising source

It is amazing to reflect on the fact that during the Christmas holiday three years ago I realised that there was something seriously wrong and that I would have to see a doctor.  At that time it would have been difficult to conceive of feeling as well as I do now. However, it is interesting that even at this stage one makes new discoveries about one’s condition. The strange thing it that it should be in a book by Patrick O’Brian (“The Mauritius Command”) that I should find an explanation. The work in question is famous for the fact that it has probably done more to perpetuate the memory of Caroline Herschel, the discoverer of the planet Uranus as well as several comets. In an early part of the book one of the main characters, Stephen Maturin explains that a ship Boadicea was to have been commanded by Charles Loveless. “However, his malady increased upon him and in spite of my colleague’s efforts and of my own he is now on shore with an obstinate tenesmus that will keep him there.”

So, what is tenesmus? According to Wikipedia (http://en.wikipedia.org/wiki/Rectal_tenesmus) it is the urge to defecate even when the bowel is empty. Now, for many years past I have had sporadic instances of an urgent desire defecate at a time when it would not have been expected. I generally attributed these to being improperly dressed during cold weather and experiencing a chill of the abdomen.

However, the situation has certainly changed since the completion of radiotherapy (http://en.wikipedia.org/wiki/Radiation_proctitis).  It can be a problem, particularly early in the day if I am out walking somewhere and am unable to find a suitable bush to empty my bladder. It feels as if the pressure of the bladder on the bowel leads to an urgent need to defecate even when there is almost no solid material present. If I can empty my bladder in time, then the feeling passes. If not, then I have to find a loo fast or at worst, a very private bush.

So, thank you Patrick O’Brian. You have provided me with names for what I have experienced and that is always a good start.

An anniversary

An anniversary has just passed. On 12 October two years ago I completed my course of radio-therapy and must confess that I have rarely felt better in my life. In early September there was the six monthly blood-test. This was followed on the 25th with a meeting with my oncologist who I have not seen for a year on account of her being on maternity leave. And would you believe it – she’s pregnant again!  Does she not know that she is an important part of the recovery process? I think that even if she had to give me bad news it would be done with good humour. Our meetings tend to involve riotous discussions. Even on Zoladex I come away with a sense of elation after meeting with her. Her report this time was that PSA remains below the detectible limit. The subject of remaining on Zoladex was raised and she voiced concerns such as the need for bone density scans. It was agreed that we would discuss the matter again, but as she will be on maternity leave at the next six-monthly appointment, I suppose that this will be a year from now. In the meantime it remains to be seen how I get on with her stand-in.