Oncology Outpatients 1st Sept and Chemo 3rd Sept

A busy couple of days last week with a trip to London and ULCH for my Oncology Outpatients appointment on the Wednesday and then this was followed by Chemotherapy on the Friday.

The outpatients appointment went well although I had to wait about an hour to be seen and as I had a relatively early appointment, 09.40, I though I may have been seen more promptly. The appointment didn’t last more than 10 minutes and was really just a quick review to see how I had been since my last chemo on the 13th of August.

For which the answer was I had been OK, the severe attacks of pain I had suffered after round 1 had not returned and apart from being tired I had been OK.

We did discuss having another PSMA PET Scan which will help tell whether the Carboplatin is working or not and I have asked for this to be after the 20th of September as we are going away until then.

But given my rise in PSA I am thinking that the Carboplatin is not working. More about that later.

So the other two things I had to do while I was at the hospital was to have a Covid PCR Swab test prior to having treatment and also a blood test.

And while these two things are done in the same place there are two queues, more time sitting and waiting!

I was called forward fairly quickly for the covid test but had to wait about an hour for the blood test.

And with all these things done I headed home.

On Thursday I got the results on the blood test which for the most part was OK, some areas like my red cell count were low but only slightly and nothing to worry about really.

My Alkaline phosphatase levels were a little high at 274 for which the standard range is 40 to 129. Alkaline phosphatase gives an indication of cancer activity in the bones so a little worrying that it is climbing.

Of more concern though is my rising PSA which has now gone up to 646 from 396 so a rise of 250 in 3 weeks!

So while we are not near the highs of 2019 the PSA is climbing and two rounds of Carboplatin don’t seem to be holding it down. So the PSMA PET Scan will be the big test and show what is going on.

On the plus side I feel well apart from the side effects of the chemo, I am still walking and enjoying life and getting out and doing things. My appetite is good and I enjoy the odd beer now and then.

So now it is really a waiting game to see what the scan shows and what treatment may follow and at this time that is most likely going to be Radium 223.

So Friday came and Barbara and I headed to London, she is still not allowed in while I have treatment but it is comforting having her with me for support and we also manage to have a quick lunch in Pret which was a treat for both of us.

As well as having Chemotherapy I was also to have my Zoledronic Acid infusion which is a few weeks over due, they have been focussing on the chemo and let the Zoledronic Acid slip a little.

The Zoledronic Acid is to strengthen my bones so I am pleased to be back on it as it will help keep me healthy.

Overall the treatment went well and once the cannula is in it is pretty straight forward, I have some pre meds, anti sickness, Domperidone and 8mg of Dexamethasone steroid. The downside of the steroid is that it makes me a little hyper and stops me from sleeping, they also cause some constipation and so I have that to look forward to!!

And before long we were heading home.
Lot’s to think about but we have a short holiday coming up to North Wales and so will get a chance to have a break and change of scenary and also recharge the batteries for any coming challenges.

A rough day and chemo update 16 August 21

After feeling pretty good following on from my Outpatients Appointment I took a turn for the worse on Thursday evening. We had been out for dinner which was fun and I was feeling good but during the journey back to the hotel I started feeling rough, with the onset of what could best be described as flu like symptoms.

I had pain in my back, chest and thighs and a cracking headache was developing. This pain was all in or around areas where I know I have bone metastases or ‘mets’ and so could well be caused by the chemo having a go at the cancer cells there. I also felt very fatigued and just wanted to go to bed, which I did.

We were staying in a very nice hotel but it is always more comfortable to be at home and close to the things that you know. So when I awoke in the morning we took the decision to head home once I was feeling a bit better to travel and therein lay once of the challenges.

I needed some stronger meds which I had at home but didn’t feel well enough to travel home and so I contacted my GP to see if they could prescribe to a pharmacy local to where we were staying and they said they could.

Several phone calls followed and I think that really the doctor wanted me to be seen as I was in a bit of a state but I didn’t want to be seen locally and potentially end up in A&E away from home. If I was going to A&E I would sooner be closer to home.

But in the end I managed to convince them to send the prescription to a locally pharmacy and was soon taking some oral morphine which didn’t take long to kick in.

I have to say a big shout out to my sister and brother in law who we were on holiday with, they were amazing and went to the pharmacy and waited while the prescription was sorted and then helped us pack. My sister in law then drove our car home while I travelled in the back of theirs. So a big thank you to them.

I also heard great reviews for the local pharmacy in Southwold who went above and beyond in getting the prescription sorted and even phoned my GP to chase things up. And so a big thank you to Reydon Pharmacy.

So I was feeling a little better and before long we were heading home. To be honest I spent most of the day in a bit of a daze, dozing in the back of the car, getting home and dozing on the sofa, you get the idea.

Well the oral morphine was helping which was good as I was due to have my next chemo the following day.

We thought it a good idea that Barbara comes with me and while she wouldn’t be allowed to sit with while I was having chemo she would be at hand if I needed help before or after.

We also decided that getting the train in London and then a taxi to the hospital would be the best way to go.

And fortunately all went to plan and the chemo went as expected. I was feeling better and more able to go through the procedure and soon I was done and we were heading home.

Another cannula

I did manage to get my latest PSA reading which has risen to 396 so up from 352 on 21st July. Add that to the increased mets shown on the scan and it does not make for good reading, so really hoping these second and third rounds of chemo are going to do the job.

And so now a few days later as I write I am wondering what the next few weeks will throw at me, I had thought that I had got away with the first round of chemo as I didn’t get any side effects until until the 3rd week, so who knows what might happen this time around.

With the chemo treatments being every 3 weeks they soon come around and I am already counting down until the next one!

PSA 305 – 2 July 2021

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.

Oncology Outpatients 30 June 2021

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.

On my way to the hospital, deep in thought!

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.

Waiting!

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.

Another blood test!

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.


Blood Test Results

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]

Or High

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.

Oncology Outpatients 3 Feb 2021

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.

Still it is better to be waiting 🙂

PSMA PET Scan and Blood Test

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.

This is my arm with the cannula fitted, there is a flush fitted and inside the Orange case is the radioactive trace.

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.

I just have to wait a week now for my results 🤞.

Outpatients and Zoledronic Acid 6 Jan 2021

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.

It’s all done wearing a mask

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!!!

Just waiting for the drip to be attached.

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!

Blood Test

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 🤞.

X-Ray showing my damaged vertebrae.

So I am hoping the results for the blood test come back soon and show good news.

Oncology Outpatients and Zoledronic Acid

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.

The streets were quiet with arrows to mark the way!

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.

My blood pressure was quiet good today the top image is before the infusion.

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.

Finally fitted

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!

It’s all about this little bag of liquid!

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.