Well, it’s been a while since my last post, so I thought I’d provide an update. Last time round, I was coming to the end of my lutetium treatment which had produced disappointing results. Long story short, I decided to go ahead with the sixth cycle following a good psa reduction from the fifth treatment (hurray), but, after that, the psa rose quite sharply (boo). End result, I was exactly where I was at the start of the treatment, with just partial improvements in some bone mets/lymph nodes. So, I guess the lutetium was successful, but only in the sense that it held back disease progression for a while, rather than taking my psa right down and resolving some mets. Not a bad result, but not as good as I’d hoped.
After that, the doctors advised a period of rest/a holiday to get my strength back up after quite a long period of treatment and a number of operations. That sounded good to me, so we had a lovely break in Saint Lucia in early March – managing to get away in the short window that existed between the outbreak of concern over Covid-19 and lockdown in the UK.
I used a face mask on the flights to and from the Caribbean, and was subject to quite a few strange looks. Hardly anyone seemed concerned about coronavirus. I took the view that if the Chinese had closed down a city, then a region in fairly quick order something very serious was afoot – so have been really cautious from the beginning. And that has served me well, as I haven’t contracted the disease yet. Touch wood, I won’t.
My wife wasn’t as cautious, so a few days after we got back from our holiday, had full-blown symptoms (jeez, what has our family done to deserve all this?). There then followed a period of me trying to isolate from my wife whilst simultaneously trying to look after her – which was tricky, to say the least. I have to say, there were some touch and go moments where her blood oxygen levels were in the mid-80s. I have never seen anyone so ill. I found myself standing at her bedroom door a number of times listening to see if she was breathing. Indeed, there were times I actually broke social distancing rules to check she was still alive.
We were constantly debating whether or not she should go into hospital – at the time that was like giving yourself a death sentence due to the lack of knowledge about the disease, and the overload of the health system. So we decided against it. But, we were never confident it was the right decision. Fortunately, my wife is a very strong woman, and managed to pull through after battling away with COVID for around two and a half weeks. It took months before she was really herself again.
With my wife recovering, we turned our attention to life under lockdown. I’m fairly lucky as I can easily work from home, and we have a nice garden to sit out in, so the initial stage of lockdown wasn’t as hard for us as for others (a new found interest in gardening also helped). I even managed to get back on my static bike, and began to think a proper/outdoor ride might soon be on the cards (read my previous posts if you don’t know about my obsession with getting back on my bikes). But, after a few weeks I started to notice increasing pain in the middle of my spine.
At first I thought this was caused by the chair I’d been using to work on my computer at home – but things didn’t change when my orthopaedic chair was shipped home from the office. Then I thought it might be because I was leaning in to the computer screen more because of the cataract that had developed after the operation on my retina (an operation for which had been delayed because of the pandemic). But, a change of prescription in my glasses to account for that didn’t help either. So, I contacted my oncologist, who agreed I should probably have a scan.
And that, my friends, is when the sh@t hit the fan. In simple terms, there was new tumour growth at T8 and T9. My surgeon took some follow up scans and told me that if he didn’t operate ASAP, the pressure on my spinal chord would mean paralysis within four weeks. Well, that was a bit of a shock, to say the least. After the second operation on my spine in December 2018, I said that I would never have another – because the recuperation is just so difficult. But, it’s amazing the impact the word “paralysis” can have on your decision making process. So, I had the operation the following week (mid-June).
COVID-19 restrictions meant I couldn’t have any visitors at the hospital, so I spent the next ten days in a haze of opioid “bliss” watching movies/programmes that I now have no recollection of – followed by eight weeks at home trying to ween myself of the OxyContin – with associated withdrawal effects – before sorting out appointments for follow up scans needed ahead of planned cyber-knife treatment to “clean up” the bits of tumour the surgeon couldn’t remove.
I’ll cut to the chase. When I got a call from the radiotherapy consultant a few days later, he told me I had bulk tumour from T5 to T9 that had also spread laterally. Cyber-knife was no longer an option, a wider blast over the whole area was needed which, at best, would simply delay paralysis and mess me up in the long term (but had to be done to address the more pressing short term issues I was facing). My oncologist would then follow this up with four rounds of pembrolizumab treatment (as my tumours exhibit micro satellite instability).
Once again, to say I was shocked would be an understatement. It’s not that I wasn’t expecting to get to this stage at some point, more that I thought it would take a bit longer. We had to tell the kids. It was horrible. I really feel for them. They are 22 and 20. They’ve already had to deal with the BRAC2 issue. It’s not fair. I’m still hopeful that I will be the one in a million patient that responds to immunotherapy, but realise I have to be realistic now, I’ve pretty much run out of options ….
… I’m picking this up again a few weeks after I started writing this post. I’ve had the radiotherapy, and two rounds of pembrolizumab. The immunotherapy started a week after radiotherapy finished (20 grey over five days). I had a massive increase in pain around a week after the first infusion of pembrolizumab, which I assumed was related to the infusion, but my oncologist thinks is more likely linked to the radiation. I’m still not sure, as there was a smaller but noticeable increase in pain a few days after the second pembrolizumab infusion.
Either way, I’ve agreed to see what the oncologist calls a palliative pain specialist, but only if he is referred to as a “symptom reliever” – I don’t do “palliative” as it makes it sound like I’m too close to death. He has been changing the mix of medications I take with the aim of reducing overall intake, resolving possible negative interactions, and to control pain as much as possible. It’s been a bit up and down – and that could have affected my pain levels at key points in the treatment cycle, so hopefully this will soon be sorted out.
… a few more weeks have passed since I’ve worked on this note. Over that period, I’ve been finding the walks around the park with our dog becoming a bit more difficult. I have a less energy, breathing is harder, and my right knee feels strange – it gives way every so often. There’s tingling in my toes and fingers. All of these are well know side effects of the pembrolizumab, but I’m worried it might be spinal cord compression. After a chat with the oncologist that included a deep dive into all the other indicators of cord compression, it was felt that it’s probably just the immunotherapy. In fact, I was given the ok to re-start with the physio who helped me recover from the previous operations I’ve had, and appointments were made for me to see a urologist, so that we can be definitive over whether or not some peeing issues I have are structural (related to previous treatments) or linked to OxyContin/opiates (I’ve had this issue after every operation, and it’s only stopped once I’ve managed to ween myself off the opiates).
The first session with the physio went well. She ran a number of tests and thought spinal cord compression was unlikely, although she’s not a trained doctor, and we had the session remotely over Zoom – so she couldn’t do hands-on-tests. At the end of the session, she gave me a series of exercises to work on and I felt really happy, But, things took a turn for the worse two days later when I travelled into central London to see the urologist. I was all over the place. Energy-less, wobbling a bit, and my right knee kept giving way – I almost fell over a couple of times on the underground - so, I called my wife and asked her to pick me up from the station. When I got home, I contacted my oncology team, and was told I was going to be admitted into the hospital straight away.
At the hospital everyone was convinced it was side effects of pembrolizumab. The physio did an extensive list of reaction tests on me, and didn’t think it was spinal chord compression. But when the MRI was done, that’s exactly what was revealed. I stayed in overnight, was loaded up with steroids and allowed to go home the following evening. Later, I was told I had 6 weeks to a short number of months of life left. We had to tell the kids again. Again, it was horrible. Then we told family and close friends. Horrible again. Every person you tell is a relationship that will soon end. You send them little messages thanking them for being in your life, for being there, and for sharing wonderful experiences. But, no matter how many words you write, they are never enough. Never.
Over the next week or so, we were visited by Macmillan, Occupational Therapy, and the District Nurse. Equipment started to be delivered – walking sticks, a wheelchair, wheelchair ramps, toilet seat height adjusters, chairs for the shower and bathroom, a lever to help me sit up in bed. A hospital bed will be delivered at the appropriate time. The steroids do their stuff and reduced the pain significantly, but, as ever, they gave me the roid rage, made me incredibly antsy, and forced me to eat like a pig (this is dexamethasone, which is always worse than prednisone for me). So I decided to come off them earlier than planned – as I said to the oncologist, I would rather have an increased fog from more fentanyl and be nice to my family, than stay on dexamethasone and feel like I want to kill them in the last part of my life. Unsurprisingly, she thought that was the right choice too
As I was feeling fairly good for a few days, it was decided that I would have the third cycle of pembrolizumab. If that sounds strange, my view was that I was strong enough to have it, the insurance company had agreed to pay for four cycles, and it might just help to get me to Christmas – so, why not? Unfortunately for me, the third cycle produced the worst side effects so far. The first two days, I could hardly walk – partly due to breathing issues, partly because the bottom half of my legs felt like lead weights. The part of my spine which has most tumour became very swollen, and the pain was excruciating. I had to add some OxyNorm to the fentanyl to get the pain down to a controllable level. The third day seemed like a miracle – no pain, feeling a little euphoric, but after that the days were fairly mixed in terms of pain and mobility. Yesterday – one week after the infusion – I woke up in the night completely drenched in sweat – it was like I’d been in a shower, so I changed my pjs and went back to sleep. When I woke up I was freezing cold – at one point my body temperature was 33°. An additional layer of pjs and a couple of hot water bottles pushed my temperature back up to the normal level but, when we spoke to the hospital emergency line, they told me to come in for a blood and urine tests. I declined – because the COVID risk of going into central London was so high – and got the tests done at home. But, a few days after that I started having real difficulty with my activity and breathing again – so much so that I called the clinic and was admitted again.
And that’s when things got interesting. First, a CT scan and x-ray of my chest show “stuff” in both my lungs - I’d noticed “crackling” in the left lung the day before, when I’d had another MRI, but nothing in the right. There was also an acid-reflux-like thing going on every time I breathed in deeply that usually set off a cough, so it was no real surprise that something showed up on the scans. But, as I’d had a lot of the other classic side effects of pembrolizumab i.e. swelling of the legs and feet, headaches, dark urine, unusual weakness, blurred vision, body aches and pains, numbness and tingling – particularly in the hands and feet, a new cough, ear congestion, fever, chills, joint or bone pain, redness of the eye, chest pain, difficulty speaking etc., I just assumed it would be another pembro side effect i.e. interstitial pneumonitis. But, the Hospital said it could be COVID-19 – as the symptoms are almost identical.
So, I was whisked off to the COVID ward to await the results of corona virus tests. Test one came back that evening ….. negative (I said it would, but apparently I don’t have as much medical knowledge as the doctors ). Test two came back late the next day… also negative. So, I am now, waiting for a PSMA scan before being transferred back to the non-COVID part of the hospital.
Interestingly, I spoke to my oncologist when she visited yesterday and she told me that the MRI scan showed the tumour around T6 had improved slightly whilst everything else was stable. I took that, linked with the fact that, in her experience, most of the people who do best on pembrolizumab are those with the worst side effects, either during, or after, the treatment as positive news. So, the PSMA scan today, combined with my recovery from where I am now will determine whether or not I have the last pembro infusion. I’m not fooling myself, I know my time left is limited, regardless of all of this. But, if it gets me through to a final Christmas with the family, I’ll take it. I’ll let you know how it all goes ….
A couple of days have passed since the PSMA scan. The results were, unsurprisingly, similar, if not identical, to those produced by the MRI. I’ve had blood, magnesium, steroids, hydration, antibiotics etc. pumped in to me, and the breathing is better, even though they have turned down the oxygen level I’ve been having since I arrived. Blood saturation is at the 92-94 level rather than the 88-90 level we started at. The doctor is talking about being able to go home at the weekend, possible with a supply of oxygen. The physio has started to take me for walks around the ward – I think we are going to try stairs tomorrow, which I expect to be an epic fail, but I’ve got to keep trying. My PSA from my latest blood test came in at 78, which was down from 87 on the previous reading, and a post radiotherapy peak of 98. I wasn’t expecting much of a fall as pembrolizumab apparently doesn’t typically have a large effect on that front, but there’s always that hope in the back of your mind, even when you’ve shot five of the six bullets from the Russian roulette gun, and you know the next one is live. And so, fellow warriors I will leave it there. Good luck to all of you, keep fighting, never give up. Thanks for all your help and support over the years. David.
You are one brave hard hitting character--Hope I handle things as well when my time comes, as the Drs assure me it will. Merry Christmas only a couple of months early, enjoy your family and feast if you can.
David, I believe that you are going to be resilient and ok. Thanks for showing us what hope and courage looks like. Keep the faith♥️
in reply to
Thank you 5 - I’ll try my best.
I am so happy that she recovered from the virus and you did not get it . That’s amazing . I’m glad that you two got away to St Lucia ,bet that was great? My prostate was an alarming T-4 , i did not know that T-9 even existed ? Wow? I feel that APC treatments are a roulette wheel ? And no body has figured this shit out yet .. We know that . The doctors know it too. I praise you for your reasons of love and family that have kept you here fighting for so long.. It’s really a testament to your inner strength . We are all walking the plank . Some “think” they’re “cured”,I prefer to think that I’m lucky to be under the radar but pc isn’t quite done with me yet . this is with us all until we depart this post .. I hope that time isn’t soon for either of us . Hang in there guy . You are an inspiration to me 🙏I pray for less suffering and more mercy for you ..peace to the family 🕊
in reply to
Thank you my friend - our conversations have helped me a lot. Hope you stay under the radar for years to come. Peace to you and yours.
in reply to
Thank you Sir... we trudge on! A change of a little snow and wind has come to Prescott . Peace to the family through this season .😷🙏
By T9, High Cadence refers to the vertebrae T9 location., not the prostate cancer clinical stage. There's the neck vertebrae, Cervical, (C), the upper back Thoracic, (T), and the lower back, Lumbar (L).
In my experience, the metastisis went from a back lymph node, back in 2012 or earlier, near the right shoulder blade to the T9, wrapped around the vertebrae and slipped between vertebrae, and then seemed to expand into the direction of the liver. That is what it felt like. I cut it back with Lupron/Casodex treatments,, 2012, 2014, and 2016, and lately Lupron/Xtandi June & Sept 2020. I can still feel it. I discovered in 2012 that Lycopenes and in 2016 that hot hot showers seem to help control the cancer growth and pain. I also tried south magnetic fields with refrigerator magnets which seemed to cut it back in a few days., for a week or more. But so far it is undefeatable, due to the depth I suppose, except possibly with the lycopenes. I'm in my 8th year of stage 4 now.
It's heartening to see 18 years is possible, and informative to see what's ahead, but kind of scary to look into the future that far. Thanks High Cadence for your writeup!
That was a long post but I understand exactly why and could not stop reading until I reached the end. Thank you so much for sharing this, I am expecting to be at the same point some time and you have helped me. I hope you and your family have a fantastic Christmas (even with the Boris lockdown). Thank you again! By the way, I live just up the road in Newcastle but I have been down to Harley Street twice for PSMA scans and I believe I will be going again before the year is out.
That’s an incredible story ... and I’m sure just a short chapter in an 18-year book of experiences. You are a real warrior! And an inspiration to us all!
Thank you for sharing. It helps us all more than you may realize.
May this holiday season give you the happiest of times with family and friends.
Thank you for sharing the details of your PCa experience. I read every word. You are a skillful writer, even while you are drugged and in pain. God bless you.
What can one say, but you fought the impossible fight in a war that cannot be won, but you got many extra years as compared to many, but there is little joy in not being able to beat the beast. Your post is a wake up call I hope, so some on this site who do not take it seriously and think that they can play around with supplements etc. but you told it like it is, a war against a foe who will not let go, will not die, will keep chewing at us until we are dust.
You fought a long war as good as a man can do, so not worth much but you won some rounds!! See you on the far side!!
One last comment, for those in pain, do NOT worry about addiction to oxy or any other painkiller, if it works, take it!!!!! Fear of taking pain medications should NOT be in discussion with end stage men period!!! They will not give you more time, but will, make the time you have left, a little better so you can have some last laughs and rest in peace
Wow!!!!! Amazing story of grace, courage and perseverance. Mesmerizing to say the least. I’m happy you have loved ones nearby to share your joys and sorrow. The only thing Worse I can Imagine is going thru all that alone. I will pray that some Hail Mary comes thru for you and if not that your remaining days are joyful and meaningful.
Well my friend I identify with your daily meanderings, side effects from goodness knows what at any particular time, and consideration of what the future will bring. Very poignant. Roll on Christmas, 2021 that is, and I intend being there too.
First, thanks for the candid and honest sharing, it helps motivate all of us, especially me.
Second, I am amazed by your strength and positive attitude 👍
Third, my early heartfelt Christmas joy to you and Family ❤️ And in my heart of hearts, I know you will ring in the festive cheer of 2021 ❤️❤️❤️ And many more 👌
David, my best to you Sir and keep the faith and continue with your positivity ❤️
Thank you for sharing your experience you help us all understand what our futures will be. You mentioned telling your kids about BRAC2. I was just diagnosed with BRAC2, and don’t know the significance for my kids. Are you able to share your knowledge? Thanks
I am also BRCA2+. My two daughters (36 & 39) were tested, and both came back BRCA2+. I believe it is much better for them to have found out sooner than later, so they could be proactive and keep ahead of any possible eventuality. They could be susceptible to breast and/or ovarian cancer. If I had a son, he could be susceptible for prostate cancer.
Was put on Olaparib PARP in Feb 2019, and it kept my PSA as undetectable for 18 months. Recently, PSA has risen to 0.68 in 4 months. Continuing on Olaparib so far, and starting to consider next steps. Oncologist has talked about possibly going on Keytruda at some point.
Thanks so much for sharing your journey. I read every word.
Know that you are helping and inspiring many of us fellow warriors here on this forum. For me reading that you are so far18 years in, makes me believe I possibly have more years beyond my 2 1/2 so far. Although, I was diagnosed at a much later age (63) than you.
Yes. Exactly for that reason. They were really optimistic, but it didn’t work out. They thought the dose could have been an issue - wanted to give me more - but the side effects were fairly bad, so I’m not sure I could have managed more.
What an amazingly great fighter you have been starting from the age of 37!
In a dire situation you have laboured selflessly to give us a lengthy account of what you have experienced with your treatments and it is all inspirational for all of us to hang in with some hope till the very end. You deserve to live longer to enjoy not only this Christmas with your family and the loved ones but many more to come!
May the God have mercy upon your life and I send my prayers to you and your family🙏.
Like so many I thank you for your detailed sharing. It is very inspiring and sobering for me to consider. Your fortitude, your life force, shine even as the body declines. It makes me value even more every née morning and every day with my wife.
I am considering having her read your post to prepare her for my own inevitable end- game. But not sure if she maybe need not carry that knowledge until then. What do you think?
Wishing a very happy Christmas to you, Dave, I will be thinking of you. And wishing you peace in transition to the great beyond. May the next chapter in your adventure be sweet, filled with love and peace and free of pain. As others have said: See you on the other side. One thing I have learned is that Life goes on in every new ways.
Thank you Mateo - very kind of you. Not sure with respect to getting others to read as we are all ready at different times. Trust your instinct. Happy Xmas to you too.
Will PM you, Re a meditation practice that can provide great support. Effortless, easy to learn and natural. Can teach it to you over Zoom. If you would like. (Free)
You are an amazing man and an encouragement to the rest of us. You’ve been blessed with a lengthy survival. In some sense, terminal cancer is a blessing of sorts because it provides us with time to express our love to others.
You’re standing at the door to eternity and there are wonderful things on the other side! This is a good time to prepare your spirit for that transition. I’ll be praying for you and your family. 🙏🙏✝️✝️
Thank you for sharing your story. Your 18 year battle is an inspiration and a reminder to keep going and live everyday. The way you cared for your wife while dealing with your own issues is heartwarming. Yours is a true love story. May your pain be decreased and your heart full. Merry Christmas to you and your family!
Lots of response, so as I noted earlier, a very relevant note for you to have made. Some think that PC is a minor treatable disease today, but you note the horrors of it as it progresses with only the grim reaper at the end of the war, not matter how well we fight, no matter how many carrots or whatever we eat and no matter how many miles we run.
It is a wakeup call for all!!!.
You right in terms of some victories, the longer those of us who have managed to ward it off for a long time, the better for those who follow, as long as a man has some health and can function, there is still life to be had!!!!
So boys, make up your bucket lists and get to living as LARGE as you can, while you can!!!
Relentless-a appropriate word for sure. I remember the joy when they told me they got it all after surgery, only to find a year later, the bastard had returned.
You and I are among the very lucky who got so much time, as many have left us far far earlier, my best friends only four years each, so in terms of the fight, I think we both won!!!!
Thank you for sharing your journey. As a PC warrior you are a five star general! I thought about contacting you while in Windsor getting a PSMA scan at Theranoatics this January. If I get back over there I'll want to pound a beer with you. Stay strong through the holiday and new year💪🙏🏋️ Easy,
Thank you David on your update. Been feeling really down and out. Really depressed. After reading your update I feel less so and more inspired to press on with this fight. God Bless you and your wonderful family. Prayers going out for you all🙏🏻
Hello HighCadence, Normally when I see a long post I just skim read it and leave. However your post held my interest and I actually read every word you wrote. You're 55 years old and fighting those bastards since you were 37 years old. Two offspring @ 20 and 22 years old. I've mentioned this before but Keytruda is keeping my Lung Melanoma in check. Hopefully it will help everyone with cancer. You will not only celebrate this coming Christmas but will celebrate many more. Please keep posting here we need you...May you laugh with and love your family every day. Tell them they have a great Dad....God Bless you all!!!
David you are such a courageous man. What an inspiration! You have done so amazingly well for yourself and for your family in fighting the relentless foe for 18 months. I wish you both strength and peace as you continue the fight and hope you have a wonderful Christmas with your loved ones.
HighCadence, yours is a great example of the fighting spirit needed in this battle against prostate cancer! I'm going into the sixth year of my battle, which began as T2a, Gleason 7 (4+3) in 2015 and became stage 4 in 2019 after initial external beam radiation and brachytherapy failed. In 2019 I had chemo (docetaxel) but 9 months afterward had a spinal metastasis --- even with an undetectable PSA --- during the height of COVID-19! (March, 2020) Of course, my battle has been nothing compared to yours, but I hope to have another 5-10 years plus on my current hormone therapy (Firmagon). Thanks again for your story!
50 infusions of Pembrolizimab for MPC4. ScNEPC...told I had 3-6 months at best 6 yrs ago this month..I'm currently in Complete Durable Clinical Remission NED.... Genomic sequencing indicated several mutations most importantly a rare POLE that expressed a High Mutational load..that directed my medical team to checkpoint inhibitors Immunotherapy and several clinical trials..I'm that one in a million.
Thank you for such a courageously honest post of your cancer journey. It’s not often to see posts that put it all on the table- I wish more would have the bravery to do so because it is helpful for many, and because clearly many care and want to support you on your path all the way to the end. Many prayers for you and your family for peace, for comfort, and I do hope for Christmas. God Bless...
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I fired my oncologist
Lupron and Zytiga working, PSA 1000+ to PSA 0.02
Rising PSA after RP, how common is this?
Docetaxel only partially successful
