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!
Back up to London this afternoon for a quick MRI to have a better look at my back.
But before that I would just like to say that so far, I have got away with no side effects from the Covid Vaccinations I had last Friday. Good news.
The drive to London was quick and non-eventful despite there being snow on the ground and road near home.
I had a late appointment and it turned out I was the last scan of the day so when I arrived, I was quickly processed and instructed to get changed into a hospital gown.
I sat for a few minutes in the empty corridor thinking about how quiet it was, just the faint whirring of a MRI machine behind closed doors. It was also slightly spooky as you expect hospitals to be full of people moving around.
After a few minutes I was called in to the scanning room and asked to lay on the bed, this was torture as lying on flat surfaces really hurts my back and so I asked for some padding to support my back and it felt a little better.
And then I was slid into the drum of the scanner, some instructions came over the headphones and then it started.
The noise never ceases to amaze me, it like being in a tumble drier full of spanners on a fast spin, and the noises change as the scanner does different things.
It lasted about 45 minutes and by that time I was just about ready to make a full confession 😉
I was slid back out of the machine and struggled to sit back up, but I made it and then off to get dressed and the journey hone.
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.
A busy week this week, Prostap yesterday and now heading to London and UCLH For a PSMA PET Scan.
I arrived early and headed downstairs for a blood test which took about 20 minutes and then headed to the Radiography Department which was on the same floor.
The reason for this scan is that my PSA from a blood test at the start of January had gone up from around 90 to 150. And the scan is to take a look inside and see if the cancer has spread or looking more pronounced.
Well what is a PSMA PET Scan?
Prostate-specific membrane antigen (PSMA) imaging is a nuclear medicine exam using positron emission tomography (PET) to detect prostate cancer. … PSMA PET is very sensitive for detecting prostate cancer, with accumulating evidence suggesting it is superior to conventional imaging tests such as CT scans or bone scans.
Basically I was injected with a radioactive trace that is attracted to Prostate Cancer calls via a cannula.
The orange case around the radioactive injection is made from metal like lead and protects the radiography staff from exposure to radiation.
Once the trace has been injected I had to wait about an hour for the trace to work it’s way round my body and so there was nothing to do but have a nap 😴!
The hour quickly passed and I was asked to change into a hospital gown.
And then it was my turn to be scanned.
I was asked to lay on the scanner bed which I did but it was painful to lie flat with my back and so a couple of pads were placed between my back and the bed. They helped a lot.
Once I was all set up on the bed a frame was put over my chest and head to help keep me still and the ‘panic button was put in my right hand.
And then the bed was slid into the drum of the scanner, it seemed quite a long way in!
And then the scanner started up, it is very similar to a MRI with lots of noise as the scanner spins around.
The scan takes about 30 minutes and I was moved in and out of the scanner as different parts of my body were scanned.
I was then asked to go to the bathroom and empty my bladder which I duly did.
And then it was back in the scanner for a few more minutes while they scanned the area around my pelvis.
Once the scan was done I was able to get dressed and make my way home. Like all radiation treatments I have to avoid being too close to people and especially young children to prevent them being exposed to the radiation.
That said I did give Teddy a big hug when I got home.
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!
Up to London today for a Covid Swab Test and a Blood Test at UCLH
The reason for the Covid Test is that I am due back at the Hospital on Wednesday for an Outpatients Appointment following by Zoledronic Acid treatment and because of the treatment I need to have the Covid Test and so I thought I may as well have an up to date blood test at the same time so we can see how I am doing.
Given the Covid situation in London I listened to advice and took a car up to London, mostly to avoid the tube but also the train as well.
London was fairly quiet, there were cars around and some pedestrians but nothing like you would expect on the first day back after the Christmas Break. There was a notable exception at Costco on the North Circular which had a long queue; people stocking up before the next lockdown I guess.
And so we arrived early for my booked time for the Covid Test.
The same as last time, the Covid tests were done in the Phlebotomy Department however there was a little confusion as when I arrived at reception I said I had a Covid Test and a Blood Test booked and was told to take a number on a paper ticket, there were 21 people in front of me so I found somewhere to sit.
It took about 45 minutes for my number to come up and in I went. The phlebotomist listened to my advice to try a vein in my hand and was soon drawing blood. It flowed well initially but started to dry up after a couple of the tubes were filled, I was also giving blood for research so there were additional tubes to be filled. These last few proved a little troublesome and the phlebotomist wiggles the needle to try to improve the flow, it stung a little and I winced.
She apologised but i said there was no need, but it did sting!
And soon I was done only to find out that I needed a sticky label type sticker before I could have my Covid swab and so it was back to reception!
Fortunately I didn’t have to wait long before I was called again. The nurse started to say that I was late for my slot. I told him that I had been there since before my slot and that I had been misdirected. He gave a knowing shrug and took the swab.
So now it is waiting time, hopefully I will get the Covid result tomorrow and find out about my PSA and bloods on Wednesday. Hopefully the PSA will be stable and the rest OK.
The great thing about todays technology is you can now access your test results online and so I now have my test results from the 24th November although I have not had a phonecall from the surgery yet and indeed I may not get a phone call as the test results for the most part are normal.
This test is the mid point test between my ocology appointments and the main thing I am interested in and the main thing they are interested in is my PSA which has risen slightly to 93.04 which is abnormal (as it states below) but is expected, it was previously, 6 weeks ago at 85, so while it is way above the range it should be (0.0 – 4.5) it is fairly stable and it is stability that we are looking for.
That and my general health which for the most part is good so I believe that when my Oncologist sees these results he will be pleased and will wait to see me in January 2021.
A copy of the blood test results are below for those who might be interested, I have highlighted things of interest.
24 Nov 2020
Serum prostate specific antigen level
Abnormal, but expected
What you need to do
Other (copy to oncology)
Serum prostate specific antigen level 93.04 ug/L [0.0 – 4.5]
Above high reference limit
Please note: From 09/10/2009, age related ranges are reported — Afro-
Today I have been over to the GPs surgery for a blood test and I have to say that it went very well.
The doctor was very good and got into the vein first time and got the blood out and the vacutainers full. I was also quick to be seen, I barely had time to sit down.
This blood test is roughly at the 6 week point between my last appointment at UCLH where they are now seeing me every 3 months when I have my Zoledronic Acid treatment for my bones and the next one at the start of January.
Fingers crossed that the results will come back and show no major increase to my PSA and also nothing else to worry about.
Overall I feel fit and well and am getting around a lot better although I still use a walking stick when I go out walking.
I have tried to reduce the amount of morphine I take for the pain in my back, I now take 10mg in the morning and 5mg at night. The are slow release tablets and cover me all day. I did try stopping the nighttime dose but found it a little painful in bed and it interrupted my sleep so I have started to take them again.
I also take 10mg of Amitriptyline at night and wonder if I could get away with not taking this any longer. I think I will discuss it with my Oncologist in January in case there are side effects coming off it.
The Acupuncture that I had has been going well but I think it was more effective when I was having 3 sessions a week rather than one a month. So I am thinking of stopping them.
As I say I am feeling a lot better and what I really need to do is continue to build up my strength and endurance by walking more. I still need to be very careful with my back and in particular with bending and lifting as the vertebrae above and below T12, the one which partially collapsed and I had cement put in are both very vulnerable to collapse as well although I hope the Zoledronic Acid is helping to strengthen them 🤞.
So I am hoping the results for the blood test come back soon and show good news.
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.