The Ca Pros Report May 2018

We rolled up at Med. Onc. with a large list of reports and queries this morning.

We had an excellent consultation and fairly easily reached agreement that—

·       Blood Pressure is excellent, better than self-checks at home

·       The Scintogram and CT Scan reports suggest intensification of existing cancer in L5/L4 rather than extension to other bone or soft structures as it appeared at first glance

·       An MRI is booked and is still needed, both for Prostate Cancer, a possible spot on my Hippocampus(?) and any possible Ca Pros link with the right ear problem

·       My levels of blood sugar now justify diabetic medication under GP, at least while on Abiraterone which is known to elevate blood sugar levels

·       Although the results from Abiraterone/Zytiga are not outstanding and even a bit disappointing, it seems to have no serious side effects and will continue for the time being

·       Recent back and leg pain is probably caused by the cancer in L4/5 and may well respond to further targeted radiation which will be put in place

·       Recent problems of balance, vertigo, etc  have no clear origin—ear, old age, medications—discuss with GP

·       Occasional problems of low mood—discuss with GP for possible adjustment of Venlafaxine, dose previously reduced for some months

·       Decision to withdraw from Village Minibus driver roster and active Community Patrol was agreed to be appropriate in the light of balance problems

The Ca Pros Report for Jan 2018

Not a very pretty result this week. My PSA is up from 41 to 60, the highest it's been for a year or more.

However, I have to confess that somehow in the packing process for our cruise, I didn't take along my Zytiga and in spite of great cooperation from our neighbour Brian and NZ Post, I didn't have them until we'd been to Sydney and back to Dunedin. Given its previous rate of doubling, the figure of 60 seems to be entirely what one would expect for eight or so days of no medication, so no surprises. Now we're plodding on with the pills and hoping for the best. But I really should be spanked.

Just before we went away I did a fascinating interview for a Univ of Otago study on the end of life opinions of people who are terminal. The draft of our conversation has just come back and the transcriber seems to have added ("laughter") to almost every comment on some 25 pages of script. It was certainly a lot of fun. As well as opening up some areas of thinking that I needed to turn over... It is good to be able to deal with these issues in a whimsical frame of mind. May it ever be so.

And I've just had a chat with Kirsten from somewhere down south who phones me up every month or so at the expense of the supplier of Zytiga. She gives them feedback on how I seem to be coping with the stuff - it's always an interesting chat and I am impressed that the company can go to the expense of keeping in touch with people who are using its product. So far, all my experience has been very positive but I guess they won't be pleased to hear that I missed more than a week on it...

Now, the big effort is to prepare a submission for the Justice Committee on the End of Life Choice Bill which is now at the discussion stages. I brought back a major cold so life here is only slowly resuming its normal course.  In fact I think I'll now go and have a Nanna Nap for a bit...


But, first, if you're so minded, here's the info on making a submission:
Submissions on the End of Life Choice Bill can be sent to the Justice select committee, by email, letter, or online. Submissions close on February 20, 2018.

The CaPros Report

Just back from Medical Oncology. My PSA is down slightly from 57 to 43 which still seems pretty high to me. We are continuing on Abiraterone and half a dozen other things. Now we're adding in some medication for severe back pain the last six days - this is occurring in the right place but it may or may not be cancer-related. If not it will clear up in a few days... Nothing seriously depressing in all that, for which we continue to be grateful.

Afterwards we had a pleasant drive out to the airport for some free car electricity, some shopping, a trip through the Waterview Tunnel and some country driving back to home.

The MCRPC report

   Drove the Electric Blue over to Medical Oncology at Greenlane today. Quite a big trip for all three of us, but a short fast charge and a hamburger at McDonalds set us all up for a lengthy, leisurely return home via Sylvia Park shopping centre and then along the best waterfront drive in the world on a really gorgeous day.
   Once again, we are amazed at the professionalism of the consultants we meet. Their blend of technical competence and personal empathy impresses us every time. This one had done her homework thoroughly: she was even aware of my struggles with my conscience over the decision to go onto Abiraterone and she had a printed copy of notes I optimistically emailed to the staff secretary only last night.
   We had a really helpful conversation as she went over my few concerns and we discussed changes in a couple of meds. We are going try a different steroid instead of Prednisol and she has agreed to my suggestion that we reduce the amount of anti-depressant we use to control the incessant hot flushes that were so much a part of my life up until a couple of years ago. There's no way I would want to return to that lifestyle but Venlafaxine  seems to be bringing some other unwanted side effects.
   For the first time in fifteen years my weight is down a little, with no apparent explanation. Most of the meds would be more likely to add weight than take it off. But my PSA is pretty stable at 56, though that is also just about as high as it has ever been.
   However, if we made the decision on Abiraterone for the sake of quality of life there's no absolutely doubt that that objective has been achieved. It's being a terrific year.

Believe it or Not

Today we went to Medical Oncology and met again with the prostate cancer team leader. They must have heard of our discomfort about going on Abiraterone and sent along their best operative!

We’d met this charming fellow last year when he introduced me to two new drugs that turned out to be absolutely life-changing. So we had very good rapport and plenty of confidence in him. Especially when he said he was determined not to try to talk us into accepting a medication we were not quite happy about.

We canvassed the alternatives: chemo is an option but we had already decided that was not for us. Targeted radiation on the spine is a possible option if we don’t do anything else but the recent scans did not suggest that there was widespread cancer at this stage.

So we turned to Abiraterone. We worked through our dozen or so questions and were surprised to find that our consultant was a member of the team that did the first trials on Abiraterone seven years ago in UK. I had read of these on the internet and had been looking forward to finding more about it year by year ever since. He’d had extensive experience with hundreds of men using the drug, not just the limited numbers who have qualified for it in this country. It was no trouble for him to answer every question with illustrations out of that experience.

Serious side effects, he said, were virtually non-existent. It became clear that a lot of our misgivings about side effects and quality of life were, in his experience, not really appropriate. Benefits in slowing the growth of the cancer were not great but measurable. Extra life expectancy, yes, is only a matter of months.

We queried him about the advantage of commencing this drug when I have no significant symptoms of the cancer—beyond a couple of bouts of back pain recently. The fact that this month’s CT scan didn’t reveal any great advancement of the cancer in my backbone also made us wonder if this was an appropriate time to start this kind of medication. His view was that using Abiraterone while I am in good shape is more likely to give another year or two of good quality of life than delaying it until I need more frequent medication for pain.

Also, we found that we can control the amount of medication I take and he mentioned some ways in which I could get extra benefit from what I do take. And he thought that, if it turned out to be reasonably efficacious, we might plan for a course of up to twelve months. It would not be for ever. Indeed, he said, if the cure seemed to me to be worse than the disease, I could stop at any time.

He said that in selecting the limited number of men who may be suitable for this expensive medication, his team take into account the specific elements of the patient’s cancer and overall lifestyle. He reminded me that my cancer is only 7 out of 10 on the Gleason scale so it seems to offer a realistic target for further hormone treatment. He also suggested that my lifestyle, general fitness, knowledge and attitude would seem to make me a better candidate for the drug than many men half my age.

He even challenged me with the thought that it would be a good thing if the drug enabled me to continue to speak out about the issues of life and death which are becoming more and more part of my own personal experience. (Flattery will get you everywhere, I thought—but I will think about standing for the somewhat dysfunctional Village Residents’ Committee!)

As have all my friends, he urged us to keep the massive cost of this drug out of our deliberations. My ethical concerns about the disproportionate amount of the country’s Health budget that is spent on people at and above my age remain. But I know that if I decline this offer it will not actually make much difference to the health prospects of middle aged men with prostate cancer and it certainly won’t provide breakfast for a few more school children.

Certainly, life —and the NZ State—owe me nothing. At my birthday last week I passed the average life expectancy of NZ males. And we know that men with Metastatic Castrate Resistant Prostate Cancer (MCRPC) generally die within two years—I am halfway through that period already. In a sense we have nothing to lose. And perhaps I still have some good reasons to remain active and well.

So we have accepted a prescription and will make a start.

But chemo? — forget it!