DO NOT MAN THE LIFEBOATS – YET

Hi all,

I met with the oncologist today. It seems the near 60% increase in PSA in two months to mid February is not keeping the oncologist awake at night. Lucky. No need to panic yet. I wish someone had told me!

He suggested an updated bone scan and chest/abdomen/pelvis CT scan to see if we can identify what is happening and where. Makes sense to me. I booked these in for Monday and Thursday of next week. So it will be a couple of weeks before we know what it means.

All options are on the table, depending on what the scans show. Maybe chemo. Maybe radiation therapy. Maybe new hormone therapy (Enzalutamide). Maybe fish slapping (only kidding!).

The prospect of more hormone therapy always scared me, due to the nasty side effects. However, (if the information can be believed) Enzalutamide has “minimal side effects”. Really! Bring it on!

How am I feeling? Not sure yet. It usually takes a while for these things to sink in. But it should be a relief. Having options is always a good thing.

Oh, and by the way, I mentioned medical cannabis (MC) to my oncologist, and advised that I am determined to pursue this, via legal or other means. Basically he suggested that the legal option is only available to children with epilepsy, and cancer patients with chronic nausea and/or pain. It is so disappointing that there is not a more open minded approach to MC. Maybe one day.

Also, by the way. I took my first anti-depressant last week. Mirtazapine 15mg. I got a good night sleep, but was absolutely cactus the next day. I could hardly keep awake. So I reduced the dose by half. Seems to be OK. Getting sleep but a little bit light headed, dreamy and tired during the day. Hopefully it will get better.

Good health and happiness to all. Cheers, Phil

 

 

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THOUGHT I WAS CRUISIN’, SEEMS I WAS DREAMIN’

As far as I knew, last year’s chemo had worked, I was receiving bone strengthening medication, and all was good. PSA was flat. Down a little bit. Everything was on cruise control, so my focus changed from short term issues to medium term ones. How could this all change? Well, it may take a while, so get your favourite drink and get comfortable. Here goes.

Today I visited my GP for my quarterly hormone therapy shot, plus a number of other issues. Here is how it went: –

  1. Hormone shot. Injection in my butt. No issues.
  2. Colds, allergies, laryngitis. I will get a flu shot in due course, and I now have a nasal spray. Laryngitis will fix itself if I do not talk too much. All good.
  3. Depression. The cancer team shrink suggested I talk to my GP about anti-depressants. Shrink visits have been good because it is therapeutic to share, but strategies to deal with depression have not worked well. My GP prescribed Mirtazapine 15mg. This was described as a sleeping aid which may help mitigate depression. Not full-on sleeping pills or anti-depressants yet. So happy with this.
  4. Sores. I have several sores that do not heal. Three skin cancers on my arms were frozen and will (hopefully) be fixed. A full skin check was done. Some pictures were taken for future reference and checks. Review again in three months. No problems here.
  5. Medical Cannabis (MC). I asked what my GP’s views were on this subject. He asked if I had experience with MC. He was surprised when I said yes. MC was illegal and I sourced it though a compassionate supplier. Such suppliers were subject to a crack down by law enforcement agencies and either ended up in jail or became too scared to keep supplying. So I ran out a couple of years ago. Coincidentally, my decline started soon after. I explained that I had a feeling that I am deteriorating again, and want assistance to get access to MC (MC is now legal, but heavily regulated with a difficult process to navigate). And some say that the product is not very good as it is designed to fail. Strange, huh? Anyway, my GP referred me to the Hemp Embassy in Nimbin, and said he would support the legal process if this was not successful. Good progress.
  6. PSA. My GP gave me several bits of paperwork which I did not review until I got home. To my surprise the papers included a report on blood tests, including PSA. It showed that my PSA increased from 24 mid December to 38 in mid February. A nearly 60% increase! And no-one told me! I vaguely remember doing the blood tests in February, just after my last oncologist visit. I did get a phone call saying that the calcium levels and other stuff was OK. When I asked about the PSA, I was told that the person did not have the PSA results, so I may hear from someone else. I did not hear anymore and promptly forgot about it. MAJOR SHOCK!

I must admit that I have been wondering recently why there were no PSA tests since December, and flagged it for my meeting next week with my oncologist. This shock discovery has now sent me into a spin. I am no longer cruising thinking everything is in order. My focus is now very much short term. I am in turmoil. Next week’s meeting cannot come quick enough. I need to know what this means. Lucky I got the sleeping pills today, as I may need them. Hopefully I will feel better tomorrow.

Good health and happiness to all. Cheers, Phil

 

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NOTHING MUCH TO REPORT

Hello,

Not much to report. I went to the renal/chemo clinic of the local hospital today for my second shot of Xgeva, to strengthen my bones.

They said that my calcium levels were slightly low, so I need to double my calcium supplements. I also need to do another blood test in two weeks to see if this helps.

Otherwise, a shot in the belly and I was on my way.

The good news is that general pain in my hips and legs/feet has improved. Hopefully in response to the new medication. The (unrelated) bad news is that I have had laryngitis for over three weeks, It is driving me mad. I am getting my voice back slowly but I am getting a cough. Hopefully, it will work its way out of my system soon. The only positive so far is that I can say a real cool “I’m Batman”. My gravelly version is much better than Michael Keaton’s version.

Good health and happiness to all. Cheers, Phil

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HAPPY NEW YEAR (AND SOME MEDICAL STUFF)!

Hello and a very happy new year to all!

Today I met with my oncologist, and the news is mostly good!

PSA has dropped from 26 (24/8/18) to 24 (13/12/18). As it should be after the chemo.

Blood tests show a high level (125 vs range of 30 to 115) of alkaline phosphatase, which indicates bone disorders. This fits with the increasing levels of bone pain throughout my body in recent times. I have been getting various aches and pains, mainly in my back, legs and hip. Sort of like bad bruises, but with no evidence of bruising.

I immediately thought that this meant that cancer had spread to my bones. The oncologist confirmed that this is unlikely in the absence of increasing PSA. The solution is an approach referred to as “reducing skeletal related events”. Pretty vague. It means monthly injections of Denosumab (Xgeva), plus a daily dose of calcium and vitamin D. And calcium levels will be monitored as we go. The medication is designed to help prevent changes to the bones that can make them weak (and is also used to slow down the spread of cancer in bones). I have previously been diagnosed as having osteopenia (reduced bone density, on the path to osteoporosis), so I guess this is all related.

So all things considered, it is a good start to 2019.

Wishing everyone good health and happiness. Cheers, Phil

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GREAT GREAT RESULTS

Hi all.

Well, a great day today with the results from the latest CT scan. There has been no progression of cancer since the pre-chemo scan in February. This means that the chemo has done its job.

According to the medical oncologist this means that, statistically, the cancer should be “on hold” for 17 months. Of course, this may be shorter or longer, depending on a number of factors. Given that I have beaten the statistics many times I am confident that we can kick the cancer can well and truly down the road for a number of years. Except for quarterly PSA tests to make sure that nothing is happening.

The immediate issue is that I have not emerged yet from the chemo fog and side effects. The main problems are fatigue and depression. This may have something to do with the significant scanxiety that I have experienced in recent weeks, in the lead up to receiving today’s scan results. The medical oncologist stated that it is too early for the chemo side effects to disappear. It may take another four to six weeks for this to happen.

This great news is timely, as my wife and I will celebrate our 18th wedding anniversary this week.

There is, however, no rest for the wicked. Yet again, I will have to commit to maintaining a healthy lifestyle to make sure that the “17 months” expectation is stretched out as far as possible

So, time to put cancer aside and get on with life. Again.

Good health and happiness to all. Cheers, Phil

 

 

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NO MORE CHEMO (FOR NOW!)

Great news!!!

I met with the oncologist today to find out whether my PSA has reduced. If not, a further four chemo cycles would be recommended (and were already booked in!)

Drumroll………….the PSA reduced from 27 to 26, so I just made it.

So……..where to from here? I have to halve the Prednisolone dose for three weeks and then stop taking it. I also need to get a CT scan in four weeks and meet the oncologist in six weeks to see what it shows.

If the PSA starts to rise again some time in the future, we can do four more chemo cycles then, or consider other options.

I did not get to ring the chemo bell to celebrate the end of treatment, but I did drop a couple of boxes of chocolates off for the chemo ward staff.

It is hard to put into words how relieved I am. I think I would have struggled to cope  with another three months of chemo.

My wife and daughter have endured a fair bit with my chemo brain, unstable emotions and other issues, so I hope we can look forward to more “normal”, stable and happy times ahead.

Good health and happiness to all. Cheers, Phil

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LOTS OF NEWS

Hi all. Well, it has been an while and a lot has happened.

This week saw me with my general practitioner on Monday (quarterly hormone therapy injection), my shrink on Tuesday and my oncologist today (Wednesday). Tomorrow is pre-chemo blood tests and medication, and Friday is chemo cycle five. Phew! That easily fills in a week. I am also trying to live my life!

I am really over chemo. Even though I look around the room and see people much worse off than me. It sucks. On all eight cylinders.

Anyway, about the oncologist. He initially said that we would not do a PSA test until after the chemo has finished, because the results would be erratic. But last meeting he asked for a PSA test to discuss today. No wonder I get so confused. PSA is up from 21 to 27. Not good, as it is increasing. But good, because it is increasing at a slower rate. The oncologist was happy, so I am too.

Also confusing was the discussion about the chemo dose. At chemo cycle four, I commented to the chemo nurse that the oncologist prescribed a lower dose due to the peripheral neuropathy (numbness at fingers and toes, which could be permanent). She said that the dose was unchanged. I assumed that I was wrong, and that the oncologist must have said that he would reduce the dose if the neuropathy worsened. Damn chemo brain makes me doubt myself! Today, the oncologist stated that the dose was indeed reduced. No wonder I am struggling!

And the final kicker was that the oncologist said that we will monitor the PSA after chemo cycle six to determine if we need to proceed with chemo cycles seven to ten. Extreme confusion. I have never heard about chemo cycles seven to ten. Being almost in sight of chemo six which I thought was the end, I am not keen on adding another twelve weeks to this ordeal. That would end in November! Good grief! Thirty weeks of chemo!

And… a scan will see what is happening after chemo cycle six.

Neuropathy means that you have to concentrate on what you are doing to avoid breaking things, hurting yourself, or just getting things done without fine motor skills. I have it mild, so not so bad. However, chemo brain (confusion, lack of concentration etc etc) is making managing this side effect “challenging”.

Emotions are all over the place and can be extreme. Fatigue is increasing, but maybe due to me doing more. On Sunday we walked a five klm charity walk. Monday was an hour in the gym. Today was a five klm bush walk. Great to do, but tiring. Add to this managing a five acre property, two horses, one dog, a wife and a twelve year old daughter, plus life in general, and maybe I am doing ok.

Life is going pretty good. Our tree change is finally backing off the “money pit” period and is more about lifestyle. Lovely. We built a beautiful deck six metres by four metres in the shade of a large gum tree as a place to spend the warmer months in comfort (as opposed the the sizzling west facing terrace of our home!). I put the last oil coating on the deck today, so I am waiting for it to dry so that I can give it a test run. Hmmm………

Despite all the hard times and negativity I realise that I am very fortunate indeed. I am still here, with a beautiful wife, sensational daughter, supportive family, a great circle of friends, good neighbours and a kick arse home and property. Beating the doctors’ life expectancy estimates was  a great win, and getting on with life has been brilliant. I could have listened to the doctors and given up. Building our rural home and property was probably a crazy gamble that I may not have seen happen. But I did see it happen. So great.

Why am I still here? Who knows? Hormone therapy? Radiation therapy? Medicinal cannabis? Prayers of family and friends? Healthy living? Tree change? Divine intervention? Meditation? Or, more importantly, who cares? So long as I can enjoy good family, friends and supporters then I am a winner.

Good health and happiness to all. Cheers, Phil

 

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