CLINICAL TRIAL

In my last post I discussed the possibility of participating in a clinical trial. Well, it happened today!

I will get the technical details out of the way: –

Trial Title – Biomarker Study to Determine Frequency of DNA-repair Defects in Men with Metastatic Prostate Cancer

Short Title – A study to determine how often DNA Repair Defects are found in Men with Advanced Prostate Cancer

Astute readers may wonder at the point of the “short” title!

Anyway, my layman’s translation is “We take your blood and tell you if the cancer is hereditary”. Maybe not 100% accurate, but it works for me.

So….what does it all mean?

• Up to 10,000 people worldwide (600 from Australia) will participate
  • The trial sponsor is Janssen Research and Development (part of Johnson and Johnson)
  • Recent data suggests that tumours caused by hereditary gene defects may be more sensitive to certain drugs
  • If I have hereditary gene defects I may qualify for potential future clinical trials for a treatment targeting these tumours

Apparently there have been successes in this area with ovarian cancer. It is not a cure, but another potential treatment to delay progress of the disease.

It may lead nowhere, but it will be nice to know if my cancer was home grown or hereditary. And it is always good to do something constructive.

I gave blood today and that is all that is involved. I will get the results in my next onco appointment in July.

Good health and happiness to all. Cheers, Phil

YOO HOO! PSA STILL TRENDING DOWN

Last week I was told that today’s appointment will be with a new oncologist. My old one resigned. The disappointment evaporated quickly when I met the new oncologist. She was impressive both with knowledge of my case and developments with cancer care.

The disappointment returned when she advised that she is only temporary and there will be another oncologist for the next review!

Anyway, the news was all good. PSA reduced from 8.5 in November to 7.3. A huge relief.

And….. she asked whether I have ever had genetic mutation tests to establish whether the cancer is hereditary. This could guide future treatment. I have not had this, so she will see if she can get me onto a clinical trial that is currently underway. I have asked about clinical trials before with no success, so this is exciting. It will be good to get another piece of the jigsaw puzzle in place.

She will also talk to my shrink to restart this part of my support.

I feel very fortunate indeed.

Good health and happiness to all. Cheers, Phil

SCANXIETY UP, BUT PSA DOWN

Hello all,

Great news from the oncologist today. PSA down from 12 in July to 8.5. PSA is now lower than when this misadventure started ten years ago.

I tried a bit of hypnosis to avoid the usual scanxiety in the lead up to getting test results. I was OK until yesterday and by this morning I was a mess. I need to work on this as it is very frustrating.

I am exhausted, so it may be time for a sneaky grandpa nap.

Good health and happiness to all. Cheers, Phil

GOOD GRIEF CHARLIE BROWN

I met with the oncologist this morning.

PSA is down from 17 to 12 in the last three months. Woohoo! What does this mean? Well, nothing is ever certain, but it appears that the cancer is dormant throughout my body except for the mass in my chest. Since the previous CT scan in December it has shrunk from 46 x 33mm to 40 x 27mm. This probably explains the reducing PSA.

Disappointingly, this does not mean we have almost defeated cancer. It will remain dormant until it has the opportunity to flare up. When? No one knows. Statistical data is not that helpful as I do not conform to the stats. However, the oncologist reckons I should be thinking about at least five years. There are plenty of treatment options to deal with any flare up so, hopefully, this is conservative. But you never know!

On the less happy side of things I had a go at dropping anti-depressants after six months. It has not gone well, so I am contemplating resumption of this medication.

It is always a happy thing to report good news.

Good health and happiness to all. Cheers, Phil

 

 

 

SHORT UPDATE – ALL GOOD

Well, it is all great news today.

I have been having problems with my back. The pain was similar to what I experienced five years ago when I was in a really bad way. It was starting to affect my ability to function. A CT scan showed no problems. My doctor suggested using a TENS machine (electric nerve stimulation) in fifteen minute sessions for three days. That was last week and so far no further problems! A big relief.

I had my four weekly bone strengthening injection today. While I was there I asked if they had the results of the PSA test I had this week. I was due to get the results next week when I meet with the oncologist, but the suspense was killing me. The PSA has dropped from 17 to 12. My head was spinning, as I was half expecting to find out that the previous test result was an error. Ten years ago when this all started my PSA was 10, so I am almost back to where I started from. Fantastic news, but I will have to talk to the oncologist about what it all means.

I will report further if I find out anything meaningful.

Good health and happiness to all. Cheers, Phil

 

A GREAT NUMBER

Hi all, yesterday I had my quarterly update on PSA and bloods. It was a phone conversation due to coronavirus protection measures.

I had the usual scanxiety in the lead up, not helped by the fact that there was no scheduled time for the call. I just had to wait until the call arrived at 1pm.

But it was worth the wait. Bloods are OK. PSA was 17, down from 32 in December! There is no known reason for the reduction. Not that much has changed in my life. Maybe the PSA was rising for several months after the radiation therapy on the tumour in my chest last year, and it is finally settling down. Maybe not. Either way, one number is not a trend, so we will wait for the next quarterly check up to see what transpires.

I was absolutely over the moon yesterday. I do not know how long it has been since my PSA was 17 or lower.

Good health and happiness to all. Cheers, Phil

 

 

IT PAYS TO PAY ATTENTION

I have read a bit about monoclonal antibodies before. I do not fully understand what they are. If I am correct, the treatment targets certain proteins or cells responsible for cancer growth and spreading. It either alerts the immune system to kill the protein or cell, or it inhibits the growth of affected cells. I considered this a bit of futuristic stuff that I may encounter one day.

For some time now I have been receiving “bone strengthening” medication. It involves a four weekly injection of Xgeva in the belly. I visited the chemo/renal unit at the hospital today for my injection. Much to my surprise I learned that Xgeva is in fact a monoclonal antibody! It is used, amongst other things, to stop bone degradation in cancer patients where cancer has spread to the bones.

I guess I should have had a better understanding of the treatment, but no big deal. It is pretty cool, though.

Good health and happiness to all. Cheers, Phil

TGIF

It has been a long week. We returned from a short holiday on Sunday, and I have been laid up with fatigue and a head cold all week. Plus the usual scanxiety leading up to the oncologist meeting today for result of scans and blood tests. And the news is….drum roll….excellent!

In a nutshell everything is OK and we have scheduled a meeting in April for a periodic review.

The scan showed: –

• Neck – no evidence of metastatic disease
• Chest – improvement in appearance from previous with reduction in size of the AP window mass and adjacent preaortic lymph node. No new evidence of metastatic disease. (The tumour that caused loss of voice has reduced from 53 x 48mm to 40 x 33mm)
• Abdomen and pelvis – stable appearance to the soft tissue in the right retroperitoneum and pelvis. Stable skeletal metastases

PSA had increased from 27 to 32 but the oncologist is not concerned about this.

The oncologist said the blood tests were all OK (last time I had mild anaemia). Now that I have read the reports I can see that the indicators for anaemia are all low, so there has been no improvement here.

I stopped psychiatric support last year when the shrink stopped visiting our town. There is a new shrink visiting now, so I have asked for this to re-commence. I really struggle with any sort of stress and I am emotionally unstable, so hopefully they can help.

The antidote for fatigue is activity, so I need to get busy.

It is huge relief and I hope I get a good sleep tonight.

Good health and happiness to all. Cheers, Phil

RETURN OF THE BIG BLACK DOG

I have been struggling with depression lately and I am having difficulty getting out of it.

Not helped by a very long period of dry, hot, windy weather. Today we finally got a cool change. A top temperature of 31 degrees. Only a couple of days relief before the temperature goes back up to mid to high 30s. It was 41 degrees last Monday.

Certainly not helped by scanxiety. I was supposed to have a neck, chest, abdomen and pelvis CT scan early January for a meeting with my oncologist mid January. The oncologist brought the appointment forward to early January so I re-scheduled the scan for today. It arrived with the usual scanxiety and worry about what the results may be. I would have preferred to deal with this after Christmas.

And there has been a fair bit of stressful stuff on the home front, and I really struggle to handle any stress these days.

I feel like an exhausted emotional train wreck lately. I get bogged down in nothingness, and I am unable to do much. Anger and tears come easily. With Christmas so close and lots to do I need to be upbeat and busy, but it is not happening. Very disappointing.

Hopefully I can extricate myself from this funk and get on with life over the Christmas and the new year period before focussing on the medical stuff.

Best wishes for good health and happiness to all over the festive season. Cheers, Phil

 

 

WHAT HAPPENED TO 2019?

Hi all,

Time for those (almost) end of year reflections!

This time last year I had completed six cycles of chemo and another four had been abandoned. So I entered 2019 pretty confident cancer would take a back seat for a while and I could get on with life. As usual, cancer had other ideas.

Increasing bone pain was treated with ongoing bone strengthening medication.

Anti depressants were tried and failed.

PSA started rising, but I was not informed.

I lost my voice in January. There were stories of a virus going around which caused temporary loss of voice, so I did not worry too much. It lasted for about a month then went away. It came back all too soon and it took a while for my medical team to join the dots and conclude that the cause was a tumour in my chest pressing on the left vocal cord nerve, rendering it useless.

Radiation therapy was recommended and, with a pretty negative prognosis, we did ten sessions over two weeks. Fortunately, it seems to have worked. After about six months of no voice I seem to have recovered. I say “seems” because a neck, chest, abdomen, pelvis scan in mid January will tell us more.

While we were working on the problem I started on a second layer of hormone therapy. I was very relieved when we agreed to drop it after radiation therapy was selected as the treatment. I am always happy to have another treatment up my sleeve!

How has all this affected me? Well, I have to confess that I have struggled. I have been depressed, fatigued, lacking sleep and drinking too much. The good news is that I am dealing with the alcohol thing, and it will probably help the others. Also, sometimes it is little things that help. I went to the health food shop recently to re-stock my supply of magnesium supplements. I take these for leg cramps. They often occur at night and obviously affect my sleep. Although recently I had leg cramps during the day while fire fighting. The lady at the shop suggested that I take them at night instead of the morning, and before I go to a fire call. Pretty simple really. It is early days, but it seems to be helping.

Volunteering has also helped. When I started with the rural fire service and at the cafe I was making a contribution and getting out, learning new skills and meeting people. Fatigue made these tasks challenging but it was worth it. However, circumstances have changed and I am not sure if I can continue with these activities. Time for some think music while I work out what to do.

And………I decided to learn the guitar. Helped by the fact that a good neighbour is a blues singer, song writer and guitarist. Plus he has a full blown studio and teaches guitar. I had an assessment and first lesson last week. I have been practicing chord progressions all week prior to my next lesson tomorrow. I am not quite nailing it but I have made surprising progress.

I talk a lot about me and not much about my wife and daughter. I want to keep this site personal and they can post articles if they wish. However, they are with me every step of the way and they suffer as well. I have struggled to be the man that I want to be remembered as. But I am feeling better over the last few days and I hope this continues. Then I can launch into 2020 with a new perspective. And if I can keep carving out more years to live life the way I want then cool!

We are going on a short holiday over Christmas for a well earned break and will eagerly await what 2020 brings!

Best wishes for good health and happiness over the Christmas and New Year period. Cheers, Phil