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.

Filgrastim

What is Filgrastim I hear you ask?

It is an injection that I have for 5 days following chemo treatment with Cabazitaxel.

This is administered at home and my wife nurse Barbara has the pleasure of injecting my each evening.

Filgrastim is a white blood cell growth factor that stimulates the bone marrow to produce new white blood cells quickly.  This is important because the chemo is killing some of those white blood cells.

A reduction in white blood cells makes the body less able to fight infection and so hopefully this keeps it all balanced.

Seems to be working so far.

Cabazitaxel 3

Well another day and another visit to UCLH, this time for chemo.

Arrived fairly early, 0810 for an 0840 oncology outpatients appointment followed by a 0940 chemo appointment.Only time will tell if they will run to schedule!

I was quickly called forward for observations and my weight and blood pressure where taken. Blood pressure was good.And by way of surprise the oncology appointment was early and we went in at about 0830.

I am not sure if Dr Yin had checked to see if my blood test results were in as he said he was waiting for them until I told him I had the blood test yesterday!

He went off to get the results!What he came back with was not good news.

My PSA was now 298 up from 196 on 6th March and 61 on 16th Jan.My Alkaline Phosphate level was 115 which was slightly down on the last reading.

He said he thought we were not far enough through Cabazitaxel yet and we should wait another 3 weeks to see how the PSA looks after today’s treatment.

He said if it is still high then he would send me for another bone scan to see if there is any other activity.

He said the PSA was only one indicator and that overall I was in good health.

Apart from this time bomb inside me!!!!

We had a brief discussion about what future treatment options maybe and he said Radium 223 was an option as well as steroid and oestrogen treatment.

The Lutetium 177 trial is still not open.

I must admit I was a little shocked by how high the PSA was, when I was first diagnosed it was 226 and now it is 298.

I have a real concern that they are running out of treatment options and not sure what else they can do.

My PSA has been rising ever since it was down to 1.6 after docetaxel in 2017.I understand it is just one indicator but feel a little that they have not paid enough attention to it.

I am also starting to think that they are tied up in NHS protocol and what they can do and I need to start looking at other options.

But for now I need to get chemo done today and keep my fingers crossed.

So 0940 came and went and I was eventually fitted with a Cannula at about 11am.

Then a wash was put through and the pre-meds which consist of the following.

Chlorphenamine – a piriton based antihistamine.

Ranitidine – to settle the stomach.

Dexamethasone – a steroid.Metoclopramide – for anti sickness.

All the waiting gave us time to complete 1 jigsaw and finish off another that someone else had started.Before long I was connected to the Cabazitaxel which took about 40 minutes to go through, then another flush and I was done.And it was time to head home.

I finally got home at about 3 pm, I felt really tired, not sure if it was the early start or the treatment.

Now to see what the next 3 weeks bring and if the side effects are any worse.

Fingers crossed.