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!

Oncology Outpatients 11 August 2021

Back at UCLH today for my Outpatients appointment prior to having Chemotherapy on Friday. I am also going to have a blood test and a Covid Swab Test.

A very different journey today as we are away in Southwold. So about an hours drive to Ipswich train station followed but a 1.15 hour train ride into London and them 10 minutes on the tube.

But totally worth it as being on holiday gives me do many benefits and even the train journey was nice and relaxing.

I arrived at the hospital in good order and was soon called forward to the second waiting area and straight in to have my observations done.

My blood pressure was a little high and even after taking it three times I wasn’t able to bring it down by much.

I guess it could be high because of the travel to the hospital although I feel quite relaxed or it could be because I was poorly the other day?

And then before I knew it I was in with the doctor who did a review of how I had been. I told him about the side effects I suffered and he said this was fairly common and I should expect more!

He also went over the results of the PSMA PET Scan that I had on Friday. Which basically showed that more mets had developed since my last scan in May.

The next scan will be in around 8 weeks so let’s hope the chemo has an effect by then and has reduced them down a little 🤞.

If the chemo is not effective after 3 treatments then they will stop it as there would be no point in having the chemo. So fingers crossed 🤞.

After the appointment I then headed downstairs and had my covid Swab and blood test done. All quick and efficient.

Now I just need to wait for the result of the covid test before chemo on Friday, it should be clear as I am showing no symptoms.

Side effects – 9 August

Well what a day and it didn’t start well!

I awoke to a splitting headache, fatigue and tiredness, aching jaw and muscles. It was so bad I couldn’t get out of bed and infact I never got up until 1 pm in the afternoon and I was still feeling pretty rough.

And so I can only put this down to side effects from the Carboplatin Chemotherapy that I had on the 23rd of July. I was a little surprised to be getting side effects like this so long after treatment.

And even now as I write two days later I still don’t feel 100% and am still taking paracetamol and brufen to keep things under control.

And so now I wonder what this means for future treatments and I am due the next one in 2 days ?

The other thing about the 9th was that was the day we were heading to Southwold in Suffolk for a week’s break and so I was gutted to be feeling so under the weather.

Eventually I pulled myself together and felt well enough for the drive and so we headed off to Southwold.

And it must be true what they say about ‘sea air’ as we went for a walk along the beach and I felt a lot better. That sea air was a real tonic.

So we are making the most of our time on the coast although I will need to go to London twice, once for my Outpatients Appointment and then for treatment.

So watch this space 😉

It was overcast when we arrived.
Watching Teddy having fun on the beach always makes me smile

Chemo Update 4th August 21

Just a quick update on how the chemo has gone so far.

So far it has gone really well and apart from feeling a little tired for a few days following on from treatment I have been feeling fine and showing no signs of any real side effects.

My sleep has been a little disrupted and I think this is down to the extra steroids I was taking for a couple of days following the treatment.  I was going to sleep and sleeping for a few hours and then waking up and not being able to get back to sleep. 

And once again things are getting back to normal again.

Time soon passes on these three-week treatment cycles and I am back at the hospital for a PSMA PET Scan on Friday and then the following week back there on two occasions for my outpatients appointment and then treatment.

So far so good.

Teddy and I out on one of our walks.

Oncology Outpatients and GFR Estimation 3 Sample Scan and other stuff – 21st July 2021

Well, it’s a full and busy day at the hospital today in preparation for starting chemotherapy on Friday.

Before having any treatment at UCLH you now need to have a Covid Swab Test done at the hospital which is understandable. What I don’t fully understand is why you don’t need the test for scans and other tests.  So, this is another reason to be here twice in a week.

On arrival I headed for the Blood Test department and booked in for my Covid Test, as it was early, I only waited a few minutes before I was called in for my blood test.  The phlebotomist had barely got the needle in my arm when the receptionist appeared and said I was in the wrong place as I was booked into something called “The Pod”.

Just arrived at the hospital.

So, without hesitation the Phlebotomist pulled out the needle and aborted taking my blood which seemed a bit strange as she had completed the painful and difficult part of the process and could have soon drawn my blood as well!!

I was thinking that today I will be a human pin cushion!!

I got myself sorted and made my way upstairs to “The Pod” which was a portacabin type building setup just outside the exit doors.  I was met by the nurse who was going to take my blood and do the covid swab.  He wasn’t quite sure why I was booked into the pod, but I suspect someone had made an error while booking me in and booked me into the wrong place.

Anyway, the covid test and the blood test then went smoothly although by now I had two plasters on my arms where the different needles had been put into my arm.

Then it was off for my outpatient’s appointment, I had my eye on the coffee stand and a Flat White but thought I should head up for the appointment.

The outpatient’s appointment went fairly smoothly and was just a simple check up to see how I was feeling and to get me to sign the consent form for chemotherapy.

Job done it was now time to head for the main building and the Nuclear Medicine department where I was going to have the GFR Estimation 3 Sample Scan.

The Main Building.

Once again, I eyed the coffee stand but I knew there was another one in the main building so off I went only to discover that the coffee stand in the main building was closed!!

It was too far to go back and so I headed up to Nuclear Medicine and checked in and while the procedure is called a scan it’s not.

What happens is that I was injected with a radioactive source and then had to wait 2 hours while the source circulates around my body and then they would take 3 blood samples each an hour apart.  The 3 different blood tests are then compared and from that comparison they can work out the strength of the chemotherapy I can have.

GFR stands for Glomerular Filtration Rate and is a test which measures Urine Albumin which is a protein in that is filtered by the kidneys and so by measuring the amount of Albumin over the 3 different blood tests they can work out how well my kidneys are working and how much chemo I can have.  The radioactive source enhances the test and they can see how fast the radioactive source is being processed by my kidneys.

I hope that makes sense?

This is the first time I have been through this process and so it must be something that they do when using Carboplatin the chemo I was going to have this time.

Back to being a human pin cushion!

What the process also meant was that I was to have 2 cannulas fitted, one to inject the radioactive source and the other to be used to take the three different blood samples.

Cannula One

I was fitted with one in my left hand and the radioactive source was administered and then the cannula was removed.

I was then told I could do what I wanted for the next 2 hours while we wait for the source to circulate and so I thought it was coffee time!  Only to be told no tea or coffee, I needed to be caffeine free!!

Ah well.

I checked the map and looked for a nearby park to sit in and read my book for an hour.  I found a park called Gordon Square which was nearby and found a shady spot to read. 

As an aside the book I am currently reading is “The Stand” by Stephen King, which is about a global pandemic, quite topical for a book first published in 1978!!

Time passed quickly and soon it was time to head back to the hospital another cannula and the first of my blood samples to be taken and then it was a case of waiting an hour for the next sample and so on.  I couldn’t go far and so read and dozed in between the samples being taken.

Finally, the third sample was taken, and it was time to head home, it felt like a long day and I was feeling a little tired, I also had four plasters where the different needles had been.  I call these sympathy plasters as they will get me a few minutes of sympathy when I get home!!

I would soon be home and be able to rest before returning on Friday.

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.

Blood Test and Oncology Outpatients

My next Oncology Outpatients was on the 10th March and was a phone call; it was a follow up following my Lutetium Treatment on 19th February.

I thought it a good idea to have a blood test done locally by the GP so we had an up to date blood test for the outpatients appointment.

So I contacted the GP and booked a blood test, it was slightly more difficult than they had been previously and there was a little confusion as to whether the surgery was still doing blood test for the Clinically Vulnerable.  But eventually it was all sorted and I was booked in for Monday 8th March.

Monday came and I turned up for my appointment, I was met at the door by a receptionist and hardly had time to sit down before the doctor came for me.  I had not seen this doctor before, but she was very good and got to the vein first time and before I knew it I was on my way home.

She said they normally get results in a day or two!

Wednesday came and it was nearly time for my Outpatients Appointment.

I checked online and there were no results, ah well it was a good idea!

The Outpatients call was a little anti climatic in that the doctor, who I did not know, just seemed to be familiarising himself with my case, he did ask how I was and I told him of my experience following on from the Lutetium Treatment.

I also asked about my spinal brace again and he said he would look into it although I do not think there are many options, but it is worth asking.

At the end of the call it was agreed that I would have another call in a couple of weeks and that is now scheduled for 24th March and will hopefully focus more on my next treatment.

Hopefully we will have the blood test results back by then!