As part of my visit to UCLH on Wednesday for my outpatient’s appointment I also had a blood test and today I got the results which are for the most part ok but one of the things I keep a close eye on is the PSA or Prostate Specific Antigen.
And on Wednesday at the time of the blood test my PSA was 305 which of course is very high and has gone up 10 from 295 at the start of June.
While it has gone up, I am actually pleased that it has not gone up by much. That said I started the year with a PSA of 150 so it has doubled over a six-month period.
For those who may not know the PSA for my age should be around 4 so 305 is very high but it has been as high as 1,585 so in many ways it is in a good place.
The PSA is not an indication of cancer but a high or rising PSA can suggest some kind of problem with the prostate like an infection or cancer. But as we know that I have Prostate Cancer any rise in the PSA most likely means an increase in cancer activity (growth).
This of course all ties in with the Lutetium treatment ceasing to be effective against the cancer and so hardly comes as a surprise.
When I start my new treatment, Carboplatin, in a couple of weeks I will be looking for a decrease in my PSA and the bigger the decrease the better.
So watch this space as I will be taking a keen interest in my PSA over the coming months.
Firstly, apologies for not keeping my blog updated and I hope this is a new start to more regular posts.
I am off to UCLH today for my Outpatients appointment. There are a couple of things to catch up on with the team.
I recently had a gene test to see if I have the BRCA 1 and BRCA 2 gene mutations, if I do then it is likely that I could have PARP Inhibitors as my next treatment.
If not it is likely that they will try CarboPlatin, which I believe is a type of chemotherapy.
So a lot at stake at this appointment. I will also have a blood test and see how that looks and what my PSA is.
So back home again now and trying to take in everything that was discussed, it was a slightly longer appointment as there was a lot of ground to cover. I was also given 17 page report on the Foundation One Gene Test that I had on 9th June.
The Foundation One Test was a test to see if I have the BRCA 1 and/or BRCA 2 Gene Mutation. If I do then I would be able to be treated with PARP Inbitors and of course if I don’t then I can’t.
I will try and write more about BRCA and PARP in due course, it’s new to me and so I am still trying to take it in.
That said it turns out I do not have either mutation and so PARP is not suitable for me and so I might not go into too much detail!!!
The Foundation One report is quite complex and is aimed at Doctors and trained health care people and goes into a lot of detail to do with Gene’s. It goes into a lot of detail and just the summary looks like this!
Genomic Signatures Blood Tumor Mutational Burden – 3 Muts/Mb Microsatellite status – MSI-High Not Detected Tumor Fraction – Cannot Be Determined
Gene Alterations For a complete list of the genes assayed, please refer to the Appendix. TMPRSS2 ERG-TMPRSS2 non-canonical fusion AR amplification DNMT3A E814, R366fs41 TET2 C1271fs*29 TP53 R248W
So a bit of reading is needed to take all of this in!!
Although it does turn out I have some gene mutations but nothing that has a treatment linked to it and where they do they are common with men with Prostate Cancer.
I hope all that makes sense?
And so with PARP no longer viable as treatment options we spent sometime discussing other options, these come down to two options.
Carboplatin and Radium 223
Carboplatin is a type of chemotherapy often used with ovarian and lung cancer and sometimes used to treat prostate cancer. There is a small requirement to have certain gene mutations with this but the team thought it a viable treatment for me.
And Radium 223 is a radioactive treatment which targets cancer cells in the bones. And one of the main problems for me is the metastasese in my bones and so Radium ticks a lot of boxes. On the downside it can cause damage to bone marrow and the ability to produce red blood cells.
So after some discussion and baring in mind that I have had quite a lot of radiation we agreed that we would start with Carboplatin and then go to Radium 223 after that. This gives my body and in particular my bones time to recover more from the Lutetium treatment and while they will never fully recover the radiation will continue to decay and hopefully the negative effects of the Radium will be reduce.
One of the problems I am facing is that I am starting to run out of treatment options which, needless to say, is a little worrying.
One small glimmer of hope is an upcoming trial of something called BiTE or the BiTE study. Again more reading required and the summary of this states.
Study of Pasotuxizumab, a PSMA bispecific T-cell engager (BiTE®) immune therapy mediating T-cell killing of tumor cells in patients with advanced castration-resistant prostate cancer.
Which is all a bit of a mouthful but hopefully the Carboplatin and Radium will buy me time for BiTE to be something that I may be able to use or at least a trial I can take part in.
In the meantime I am staying optimistic and making the most of everyday, planning holidays and trips away.
So the immediate plan is to start me on Carboplatin in 3 weeks time, I have had a blood test today to check if my bloods are ok and have an outpatients appointment booked for 9 a.m. in three weeks which hopefully will be followed by the first Carboplatin treatment.
Well, it took a week but I finally got my blood test results back from the blood test I had on 8th March. Not sure why it took so long but I suspect that it took time to be reviewed and processed at the GP’s Surgery.
And there is good news and bad news!
The bad news is that my PSA had gone up from 163 to 241, a rise of 78 when I was expecting it to go down following on from the Lutetium treatment. I had really hoped that the Lutetium would knock it down as it had done in the past.
On the plus side, for the most part I feel fit and healthy.
I have forwarded the results onto UCLH and will see what they say on the 24th March when I have my next outpatients call.
The rest of my blood work looked ok to me apart from a few things which looked a little low or a little high in one case.
Serum calcium level 2.11 mmol/L [2.2 – 2.6]
Haemoglobin concentration 116 g/L [130.0 – 180.0]
Red blood cell count 4.29 10*12/L [4.5 – 5.5]
Serum cholesterol/HDL ratio 4.46 [< 4.0]
Now I don’t know what this means, but it looks like my blood count is down a little and that maybe due to the Lutetium.
I don’t know how this may affect the thinking around having another Lutetium Treatment in April but for myself I think it would be worth it but of course I need to listen to advice.
I have done a graph to help track my PSA, I think it tells an interesting story. It shows that the Docetaxel that I had first of all really made a great impact as did the first set of Lutetium treatments that I had.
Everything else has been less effective although there is nothing that shows what effect the Hormone Therapy may or may not be having as I have been on that consistently since being first diagnosed.
I do wonder how long it took my PSA to reach 226 when I was first diagnosed and how that could have been caught earlier, I am sure it didn’t climb to 226 overnight and probably took a few years or more.
I do think that had I been tested early, perhaps when I was 50 then the disease may have been caught earlier and I would have been a much simpler case to treat.
But that is hindsight and for now I need to focus on treating the current problem and on staying fit and healthy.
So I am writing this a little after the event as I have been a little poorly.
Following on from my Lutetium Treatment on the 19th February, I had a post therapy scan on Monday 22nd February, which all went fine and was as expected.
However, on the way home I started to feel a little tired and achy. I got home about midday and had some lunch and spent most of the afternoon on the sofa not doing much at all.
Come 8pm I was feeling really fatigued and was experiencing a lot of pain especially in my back, hips, and thighs. And so, I took some extra pain killers and went to bed.
And while I slept through, I felt really tired and fatigued come morning and could hardly move, I needed assistance getting to the bathroom. So I stayed in bed all morning and eventually got up at 1pm in the afternoon. I tried to have a shower but the pain made me feel nauseous and so I gave that a miss and I had to ask my wife to help me get dressed and help me downstairs.
She was an angel and made me some lunch, which I ate and then I spent the rest of the day taking pain killers and resting on the sofa. I slept most of it.
My conclusion was that I was suffering from some kind of Radiation Sickness from the Lutetium Treatment. This was unusual as I hadn’t suffered any side effects after treatment before. I also surmised that as I was given 4mg of Dexamethasone prior to the treatment this had helped me through the weekend and as it started to wear off is when I started to suffer.
And so the week continued like this, I was in pain and feeling really fatigued, it took all my efforts to get up in the morning and then all I could do was rest on the sofa. I wasn’t able to walk the dog or do any cooking or anything.
My wife really stepped up and did everything as well as working; in many ways we were fortunate that she was working from home and was around to look after me.
By Wednesday I had text the consultant who administered the Lutetium and she called me back and we discussed what was going on.
She pretty much agreed with my conclusion although didn’t go as far as calling it radiation sickness, more side effects.
We also agreed a plan of action which was for me to take extra Dexamethasone to give me a boost, I was lucky that I had some spare in the house. So for three days I took 2mg of Dexamethasone (my normal dose is 0.5mg) and then for another 3 days I took 1mg before reverting back to my normal dose.
This extra dexamethasone really helped and gave me a boost, it also helped get me moving again although it took about a day to take effect.
So that was a really rough week and as I say it was unusual for me to have any side effects from the lutetium. Next time I have some, which is due in April I will ask for extra Dexamethasone to see me through the week following the treatment and hope that keeps the worst effects away.
Going forward I have an Oncology Outpatients appointment and of course another treatment at the start of April, I will try and get a blood test done so we can see if the treatment has any effect.
Back at The London Clinic for what is my 7th Lutetium treatment.
The treatment had been delayed from the morning until the afternoon and so I was asked to be there for 1pm. The roads were clear and we made good time and so I arrived about 12.30.
Check in included a temperature check and hand sanitising. I then had a chance to grab a Flat White coffee, a real treat 😋.
I was shown to my room and then all the usual things started to happen, blood and observations were done. I had a cannula fitted and the nurse did a great job of getting it in first time which was a result.
And I ordered a sandwich and a health drink for lunch.
I was also hooked up to Saline solution to increase my hydration and given an injection of 4mg of Dexamethasone to help prevent bone pain.
Lunch came and was eaten and I waited.
The doctor arrived and we chatted things through about how I was and so on.
I asked about how many Lutetium treatments I could have and she said that in Germany they had been giving as many as 12 to 14 but it varies very much on the individual. She did say that in the UK the most that has been given is 8.
I also asked about how the BITE therapy and Lutetium would work and while nothing is set in stone she thought I would have the 2 Lutetium treatments, another in about 6 weeks, and then should look at starting BITE therapy later in the year and then seeing how that goes. If needed I could then come back to further Lutetium Treatment.
But as with all things it is dependent on how things go, how my PSA is, what future scans show and how I feel.
So what we need is for this treatment to really bring the PSA down and for my bloods to be ok followed by a period of stability.
So after a pause the Lutetium turned up with a small entourage, connecting everything up was very slick and the Lutetium was soon being injected. As before the syringe and the pump were in a lead box which protected those administering the Lutetium from the effects of radiation.
The treatment or Isotope administered was Lutetium-177 with an activity of 7400 MBq. At the date of treatment the exposure rate was 18 microSieverts per hour at 1 metre. The effective half-life of the isotope within the patient is 3 days. No detectable radioactivity is present after 7 to 10 half-lives, depending on the detector used..
The infusion took around 15 minutes and I chatted with the team. For the most part the talk was about where we might like to travel to once we can.
And then it was all done, I had to wait around for about an hour to make sure I was OK and for them to get the paperwork done.
And then I was off home.
I am back on Monday for a post therapy scan with Gamma Camera to see if the radiation has gone to the right places in my body.
Well, it is 11.10 a.m. and my phone rings and indicates a private number, I suspect it is my Oncology Outpatients call that I am expecting which indeed it is.
And it is a doctor I have spoke to a few times especially over the last few weeks and he has the results of my MRI Scan of yesterday.
Not great news as he said that I have a displaced bone fragment that maybe pushing against the nerves/spinal cord hence the tingling in my toes. He said that this fragment is not stable and could move about and so I need to be very careful.
They have referred me to a spine surgeon who will review and see what if anything needs to be done.
On the downside they have said that I should wear my Spinal Brace once more for a period of 12 weeks and wear it for most things although I do not need to sleep in it.
They are expecting more information to come through during the course of the day and they will update me as they get further information.
They are going to email a list of “do’s and don’ts” to me with further guidance about what I should be doing. The good news is I can still walk and so can still take Teddy out for walks.
The MRI did not show any further information about cancer in the spine aside from what I already knew.
So now I am waiting for further information on what I can and cannot do in regard to my back and wearing the brace.
I have also had confirmation that my Lutetium Treatment, number 7 this will be, will be on the 19th at The London Clinic.
So right now it’s a quick trip into the attic to dig out the spinal brace and it’s freezing up there!!!
I had a follow up call with the doctor this afternoon who said that the MRI has been looked at in more detail and they feel certain that the Spinal Cord is not compromised which is good news.
There has also been feedback from the neurosurgery team who feel that surgery is not an option as there is too much damage from cancer and from cancer treatments like radiotherapy and the lutetium, to my spine which discounts surgery as an option.
What this does mean is that they now feel that the spinal brace is more of a long-term solution which is bad news for me, mainly because it becomes uncomfortable to wear after a number of hours and it also gets damp with sweat and perspiration which in itself is uncomfortable, so I have asked if it is possible to have one of a different type.
The one I have is made of fibreglass and fits tightly around my back and chest and I am very sure it does what it is supposed to do. I have seen spinal braces online that have a metal spine and neoprene straps to provide the support and so I would have thought that something like that might work for me, it provides the support but also allows my body to breathe and is more comfortable.
Obviously, I need to take advice on this, but it is definitely worth asking.
The other thing that came out of the call is that they want to do a CT scan to look at the integrity of the cement from the vertebroplasty procedure so I will be heading back to UCLH in the next week or so!
Ok so just had my Oncology Outpatients telephone call.
In this case it was not as good as face to face as we were discussing the PSMA PET Scan that I had on the 26th January and I felt that if I would have been in the hospital I would have been able to see the image and better relate to it. That said it is much safer do the appointment this way rather than going into the hospital.
I cannot really be sent an image of the scan as it is three dimensional and needs special software to be seen.
The scan did show an uptake in activity around the area’s that had previously shown that they had cancer in them, so parts of the spine, the hips, the pelvis, back of skull which is not great news but on the plus side it did not show any new sites or much activity in soft tissue, the lymph nodes and the like.
My PSA has risen to 182 up from 150 on the 4th January and so they feel that having the remaining 2 treatments of Lutetium is more urgent and are going to look at getting that booked in.
I also said that I was experiencing increased back pain and some pins and needles in my right big toe and so they are going to send me for a MRI Scan to look in more detail at that area in my spine.
The pins and needles in my toe might indicate some kind of Spinal Cord Compression which may be caused by the increased activity in my spine.
I have had pins and needles in my left big toe for some time but that is put down to the Vertebroplasty procedure causing a little pressure on the nerves and in many ways, I had grown used to it.
I have been experiencing a few more aches and pains over the last couple of weeks but not sure if that is because I have been walking a little more or whether I have over done it somewhere or is it the effects of the increased activity. No one knows at this point.
So Now I have another telephone call booked for next Wednesday with hopefully a MRI before that. Normally scan’s take longer to get booked in so I would be surprised if I have had it before next Wednesday! But you never know 😉
I also asked again about the PSMA BiTE Therapy which was mentioned as a trial at my last appointment, and it was felt that it was better to do the Lutetium first and then look at trials.
So for now it is time to wait for the next scan and see what that shows.
Cancer certainly is a waiting game, always waiting for the next scan, the next appointment and so on.
Back to London again today for my Oncology Outpatients Appointment and Zoledronic Acid infusion.
The good news is that my Covid test came back negative so I am all clear for treatment and pleased to be Covid free.
The bad news is that my PSA has risen to 150 from 85 about 6 weeks ago. And so it looks like my PSA is starting that upward move again after being brought down by the Lutetium. Overall I am feeling pretty well aside from pain in my back from the fracture I had.
I was pretty disappointed that my PSA had risen so much in a fairly short time, it would seem that the effects of the Lutetium have worn off.
So the plan now is to have a PSMA PET scan and have a look at what is happening inside with a view to rechallenging the cancer with more Lutetium.
I have two Lutetium treatments left that I could have and although we are entering very much into new territory with the Lutetium it is thought it is better to rechallenge sooner rather than later. Well at least the first one and then see when to use the second one.
I did ask about what might be done after the Lutetium treatment has been used and the answer was that it would be another clinical trial. The clinical trial mentioned was called BiTE, I think and here is a brief descriprion of it.
“a PSMA bispecific T-cell engager (BiTE®) immune therapy mediating T-cell killing of tumor cells in patients with advanced castration-resistant prostate cancer”
If I understand it, it is similar to Lutetium in that it consists of two parts, the first part is attracted to the cancer cells expressing PSMA and instead of using Lutetium to kill the cancer cells it attracts the bodies own T-Cells to attack the cancer cell. I think I have a bit more to learn about this and will certainly be asking more questions next time around!
Not surprisingly by the time I got upstairs for the Zoledronic Acid Infusion my blood pressure was fairly high at 166/98 so they gave me a few minutes to relax. It also gave me time to think about what I had just been told downstairs and to calm my racing mind.
A few minutes later and I was at 145/80 and they were happy to continue with the infusion.
I had already been fitted with a cannula and while I hate to keep mentioning it, it did take 3 attempts to get the cannula in and its not the needle going in that stings, it’s the wiggling about of the needle that really stings!!!
The Zoledronic Acid infusion itself took about 20 minutes and soon the cannula was being removed and I was told I could go.
Jacket on I made my way outside and made my way home.
By the time I got home I had my next outpatients appointment booked and that is scheduled for 3rd February and so hopefully I will have a PSMA PET scan before that, it could be a busy couple of weeks!
Back up to London today for my Oncology Outpatients appointment and for my Zoledronic Acid infusion.
Given I was on the 09.07 train from Stortford it was fairly quiet although the tube was busier.
I made it to the hospital in good time. On arrival I was asked to wear one of their masks which was different from when I was here on Monday.
I checked in and made my way to the first floor reception.
My name was soon called and I was pleased to see that my appointment would be with Dr Mark Linch, the main man, I hadn’t seen him for months 😀.
He asked how I was and I told him I was feeling well apart from my back although I also said I was feeling much better.
He looked up my PSA and told me it was down slightly to 85 from 90 and a high of 1,585 a year ago.
Overall he was pleased at how the Lutetium Treatment had gone. The PET Scan showed that tumours had reduced in size and activity which was great news.
He also said that he felt that the Immunotherapy treatment I had 18 months ago may have helped to prime my immune system to help out with the Lutetium. He also said that the immune system can develop memory and may continue to attack cancer cells now that they have been shown what to do.
I have been wondering about the effects of immunotherapy and how long it stays in the body and active. Is it a permanent change or does it fade over time? I don’t think they know yet?
So now I am to go onto what is called Active Surveillance and keep an eye on my PSA. I am go have a blood test in around 6 weeks and if it is stable I will have an Outpatients Appointment in January 2021. If there is a rise then I should let them know and I will have an appointment sooner.
I also raised the point that I seemed to bruise easily and that my skin seemed very fragile, he thought this may be down to the Dexamethasone and so reduce my dose down to 0.5mg from 1.00mg.
So once the appointment was over I headed upstairs for my Zoledronic Acid infusion. While there wasn’t a lot of people around I did wait a while before being called into the Treatment Room.
I was then fitted with a cannula, again it was a struggle to get it in and while the piercing of the skin is not too bad the wiggling around and trying to get it in the vein makes me wince.
Again it took two attempts to get it in, both in my hand. They started with the bigger pink needle but then used the smaller blue needle the second time.
Once the cannula was set up I then had another wait for the infusion and it was about 12.10 before the infusion was started. Its 15 minutes for the infusion and another 10 minutes for the flush.
The infusion was no trouble at all and soon the cannula was being removed without the same amount of fuss as going in!
And then I was free to go and hopefully I will not be back at UCLH until next year 🤞😁.
I am really pleased with the news I had today and just need to think about what else I can do to help myself.
My back is getting better and I feel stronger so longer and more frequent walks. I need to be very mindful of my back as it is still very fragile so exercise that will not be a threat to that is a must.
I think I will also look at my diet again both in terms of health and cancer prevention but also with a view to losing weight.
So back on the train feeling happy and looking forward to the future.
Well it’s an adventure today, I am off to UCLH for a PET Scan and I have decided to go by train and tube. The PET Scan is a follow up on the Lutetium treatment I have been having and will take a look inside to see how things are. My PSA has been stable at around 90 and the scan will help decide what I do in regards to treatment.
Of course my big dilemma was what to wear and take, it was cooler than it has been and wet. In the end I opted for shorts and a light fleece and a waterproof which should cover all options. Then I needed masks, gloves, etc.
I left a little early as I hadn’t been on the train for a while and I knew that there was building work going on at the station. I was pleasantly surprised that I got parked very easily and used my Blue Badge to get a disabled parking space close to the station entrance. That said the car park was not busy so I guess not many people are using the train.
The train was not that busy so I found a seat and settled down for the first part of my journey.
The train to Tottenham Hale was quick and smooth.
On arrival at Tottenham Hale things had changed a little as there was also building work going on there. But my transition onto the tube was also quick and easy.
Tottenham Hale was not that busy as you can see.
The tube train itself was a little busier and would fill up as we go into the city. The tube was very hot so shorts were a good choice.
I arrived at the hospital early with the view that I would get a blood test before my scan. I made my way to the first floor and found where the blood tests were done. I normally have blood tests done in the Macmillan Cancer Centre but would try the main building .
I took a ticket and waited .
No luck and I had to give up and head to Nuclear Medicine for my scan. If I can I will try for a blood test after the scan.
I arrived at Nuclear Medicine at the right time and filled in the questionnaire.
It was not long before I was taken to a prep room and fitted with a cannula. Sounds simple but it took three attempts to get it in, the actual penetration of the needle is not too bad, it’s the wiggling it around to get the needle into the vein that gets me!
Once the cannula was fitted I was then injected with the radioactive element that would be attracted to the cancer and then show up on the scan, showing the tumours and there size, in the past they had reduced in size.
I had then to wait an hour for the radiation to circulate around my body before the scan.
The lights in my room are lowered so there is only one thing to do… zzzz.
The hour passed quite quickly and I was soon in the scanning room. I had difficulty lying flat on the bed which hard but managed to get into a position I could hold.
Once more I closed my eyes and slowly I moved through the scanner. Fortunately this was nice and quiet, not like a MRI.
Then it was time to get dressed and go.
I decided not to go for a blood test after all I don’t know when my next outpatients appointment is yet and so will try and get a blood test closer to that date so it is more relevant .
The journey home was quick and easy.
All I need to do now is wait for the results of the scan.