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.

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.

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.

A Week Away

I am fortunate enough to have just had a week’s holiday in the Gower Peninsula and while it was not planned it came at the perfect time as it allowed me to rest and recharge both my body and mind prior to starting Chemotherapy on Friday.

We had plenty of time to relax but also spent time walking along the beaches and headlands in the fresh air.

I now feel ready to take on chemotherapy and whatever it may throw at me.

Tomorrow I am at UCLH for an outpatient’s appointment and a scan and then on Friday I have the first of this series of chemo treatments.

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.


Three Years On

I can’t believe it has been over three years since I was first diagnosed with Advanced Prostate Cancer, it has been a fairly tough time with lots of up’s and down’s. I think the main thing that has kept me going is a positive attitude and the support of my wife and family and to them I say a big thank you.

The diagnosis I was initially given was.

  • Carcinoma of the Prostate T3b N1 M1 PSA 226 Gleason 9

Since then my PSA has been as low as 1.6 and as high as 1585.

In summary here is a list of the main cancer treatments I have been through. Alongside these there have been a number of other treatments to treat the side effects of the main treatment, Steroids for example.  Side effects have been tough at times and diverse, from minor to visits to A&E.

  • Hormone Therapy – Prostap Ongoing
  • Chemotherapy – Docetaxel
  • Radiotherapy – On Spine and Shoulder 3 times
  • Enzalutimide
  • Immunotherapy – Nivolumab and Ipilimumab
  • Chemotherapy – Cabazitaxel
  • Dexamethasone
  • Lutetium 177 – Current Treatment

Below is a list of the different scans and tests I have had over the past 3 years. For the blood tests I have written 42 at least, this is how many blood tests I have had at UCLH, on top of this I have had loads at PAH and with the GP, I would estimate that this figure is closer to 70 blood tests.

I believe to rest to be more accurate.

  • Blood Test 42 at least
  • Bone Scan 10
  • CT Scan 7
  • MRI 1
  • Ultrasound 1
  • Radiotherapy 12/3
  • Prostap Injection 10
  • PET Scan 1

And of course on top of this there have been the regular outpatients appointments and other trips to the hospital.  At times I have been to the hospital everyday for a week and at other times just a monthly visit.

Perhaps the worst trip was when I was hospitalised earlier this year with concerns around spinal cord compression.

I am really appreciative of the hospital staff and the service and support they provide, there have been hiccups but for the most part the service has been excellent and I feel lucky to be able to have this kind of service.

I am hopeful that the Lutetium is working as it should and I look forward to the future.

Prednisolone Withdrawal Side Effects

Who would have thought that there was such a thing as Prednisolone Withdrawal Side Effects, I certainly didn’t when I started on the Prednisolone!

I was on the Prednisolone as part of the Chemotherapy Treatment I was having, Cabazitaxel was the chemotherapy and I was taking 10 mg of Prednisolone every day to support the chemo.

So when I was taken off chemo because it wasn’t working I also had to come off the Prednisolone but because of the side effects you are weaned off.  2 weeks of 5 mg a day followed by a further 2 weeks of 5 mg every other day.  I was told that the possible side effects could be lethargy and fatigue caused by a loss of blood pressure.

I thought that this would be a doodle!

But within a few days of starting on 5 mg I was feeling a lot of severe pain across my chest, down my spine and in my thighs, so much so that I could hardly walk.  My legs had also ceased to function properly and I had to lift them in and out of bed etc.  I was also suffering from extremes of hot sweats and cold spells, more colds spells than anything and took to taking a hot water bottle to bed to fight off the shivers!

This went on for a couple of days and I took some Co-Codamol to try and combat the effects, it worked to some extent.

I then thought I would try Cannabis Oil or CBD Oil that I had recently ordered online.

It was like a miracle, with hours I was feeling much better.

I took it for 2 days and was then feeling as good as new :-), so much so I even told the doctor on my outpatients appointment.

I decided not to keep taking the CBD oil and was feeling fine until it came time to reduce the dosage of Prednisolone down to 5 mg every other day.

For a couple of days everything was fine and then I started getting pain again, less in my upper body but lots in my thighs and legs.

One of the things the oncologist had said was that because I had been taking White Blood Cell Producing drugs that my bone marrow was working extra hard and that as the thigh bones were some of the biggest bones that was causing the pain, it had been there all along but the Prednisolone was masking much of it.

Once again I was hobbling about, for some reason it always seems worse at night.

I turned to the CBD Oil once more but this time it had little or no effect so I was back to the Co-Codamol which helped ease some of the pain.  I also took sleeping pills for a couple of nights to help me sleep.

As I write I am feeling a lot better, I do feel very tired and lethargic but I have some pain around some of my cancer sites, so my shoulders ache, some minor pain in my spine and my thighs are more of a gentle throb, a soft memory of the pain I had been through.

I feel my body is adjusting to the reduction in steroids and is learning to compensate and deal with the aches and pains.  And next Wednesday I stop taking the Prednisolone altogether so just that final stage to get through.

Then it’s onto the Vision Trial and whatever that may bring but bring it on ;-).

 

 

 

Cabazitaxel 4

Back at UCLH once more for my 4th cycle of chemo but also for a review of my PSA.

I do feel a little apprehensive about what I might hear although I am also hoping for good news that my PSA has gone down and that it looks like the chemo is starting to work.

We had a later appointment today so I was there about 12 for my 1 o’clock appointment.

I was seen soon after 1pm which was good.

As soon as I saw the doctor I ask what my PSA was and he answered in a vague way stating it was in the three hundreds, I asked if he could be more precise? He had to go away and find the information.

When he returned he said my PSA was 398, up from 298 3 weeks ago and from 61 back in January. For me this is not good news although he seemed unconcerned about it.

I see this as a ticking time bomb, while I am fit and well at the moment something is obviously going on inside me and I feel I need to get on top of it before it gets too far gone.

It also seems to indicate that the Cabazitaxel is not working or doing what it should be doing.

I do wonder if one of the reason I am having a fairly smooth ride with the Cabazitaxel is because it is not doing anything and is not having enough impact on my body.

The appointment was fairly brief and the doctor said he would book me in for a CT Scan and a Bone Scan so we can see if there is any disease progression. So I will have to wait for these to come through now.

After the appointment we checked in with the chemo ward and had a chat with Bec’s who runs the team, we said we would go for some lunch and asked her if she would like a coffee, which she would, always good to keep people sweet 😉

After lunch we return to the chemo ward, Barbara was desperate to get going with a jigsaw.

Time passed and jigsaw one was done.

Mid way through number 2 I had my cannula fitted, the cannula was fitted into my forearm which was a first for me.

I was given the pre-meds and then before too long I was hooked up to the Cabazitaxel.

We spent the time finishing the second jigsaw and Barbara started a third!!!

I was starting to feel tired by the time we finished, a combination of the chemo and a long day I think.

We left the hospital just after 7pm and headed for the tube so we could get home.

How do you keep a positive mindset when you are feeling apprehensive, I feel I am always waiting for the next appointment. The worry does affect my sleeping but in the daytime there are lots of distractions and I could always get hold of myself and say “get a grip!”

So now I wait to hear when the scan will happen, soon I hope.

Side Effects and stuff

I am starting to have a few side effects from the Cabazitaxel now, had a bit of diarrhoea and feeling a little off colour, still working through it and trying to get out and about.

I also heard some sad news today that a neighbour had died from Pancreatic Cancer, I had only seen her a few weeks ago and she seemed fine, well fairly fit considering!

I feel fit for the most part at the moment and everyone comments on how well I look.  But I do feel like the cancer is a ticking time bomb that could start causing problems real soon.

I am starting to look at other treatment options if the Cabazitaxel does not bring my PSA down and that is having treatment in Germany, Lutetium 177 in particular.