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.

It’s been a while

Yep it’s been a while since I have written a post and the reason for that is I was a bit down after being told that my cancer had spread more around my bones.

I was told told that I had four new lesions, 2 on my ribs, one on my spine and one in my shoulder.  What is amazing is that these all developed over a nine week period as I was having a bone scan every nine weeks as part of the Neptunes trial.

The immediate action of the medical team was to take me off the Neptunes Trial as the protocol dictates that patients should leave the trial if they show signs of disease progression.

The next topic of conversation was what to do next?

There was a long conversation but the upshot of it all was that I was to have another 6 rounds of chemotherapy with Cabazitaxel this time rather than the Docetaxel  I had last time.  There was then talk of perhaps having Radium 223 after that, whenever that may be!

There was also talk of another trial with Lutetium 177, which is a radioactive treatment which attacks cancer cells.  Unfortunately this trial is not currently recruiting and so I can not even try and get on it.

Of course all of this was a real blow to both Barbara and I, on the face of it it looked like the Neptunes trial was working although my PSA had risen I had also had reactions that suggested things were going in the right direction.

Things were going so well we had booked a holiday to Jamaica for March between treatments.

This meant that the chemotherapy had to to be fitted around the holiday and as they didn’t want me going to Jamaica with a weakened immune system I had a six week break between treatment 1 and treatment 2.

Treatment 1 went OK with no real side effects. Treatment to, the day after our return from Jamaica went well but I have since had some diarrhoea and have felt more tired than usual.

What will treatment 3 bring?

So that is a brief summary of the last few months.

In myself, in my mind I feel better, well at least consciously, but I am having a really tough time sleeping, I feel tired when going to bed but my mind gets so active I just cannot sleep.  I don’t lie there thinking about cancer or my situation just everything else, my mind screams really loud at me.

At times I take sleeping tablets which sometimes help and mean I get a reasonable nights sleep, but I can’t keep taking them or they will stop working.

But at least I am very well and getting on with things, next chemo in a couple of weeks.

Watch this space 🙂

Cabazitaxel 1

By way of a change I am at UCLH on a Tuesday, but same early start as always.

As always first stop was a blood test which went well.

The upstairs to the chemo suite where I checked in and was issued with a wrist band.

I was then called by Connie who is one of the nurses who fitted a cannula and took my blood pressure etc.

Blood Pressure was 119/69 which is quite good as I am sure my heart was thumping after having the cannula fitted.

Then it was time to wait for the chemo to be made up. Cabazitaxel is made to order and made up on the day.

It was also time for a cup of tea and a panini as we didn’t know when we might finish.

And so we waited……

Well it’s now 1030 and treatment is getting close. I have been given a bed as I am on a first cycle of chemo.

I hope I do not have a reaction to this like I did with the first couple of cycles of Docetaxel.

About 1130 the treatment started with a flush of saline solution along some pre meds to make sure all goes well.

These were…

The chemo was ready at about 1215 and it was soon connected up and flowing into my arm.

And all was fine and rather unremarkable, no reactions, nothing.

The treatment took about an hour and then I was disconnected and the cannula removed.

I was also having my Prostap injection today. The nurse had to read up on how the injection was administered as she hadn’t done one before.

Someone else who hasn’t done an injection before is Barbara who has to inject me with something that will boost my white blood cells for 5 days.

She spent time talking to some of the nurses to get some pointers and one even got her a syringe and made a gauze ball for her to practice with.

Next time she does it, it will be on me!

Neptunes No More

Not one of my best days today, I was officially taken off the Immunotherapy Trial (Neptunes) as I was showing signs of disease progression.

We arrived at the hospital at 8am and went straight for a blood test which was surprisingly quick and easy.

We then went upstairs to see Danny the trial nurse and he said that he did not need to see me, strange!

We waited a short while and then we were collected by Dr Flanagan who had a pensive look on her face.

We then made our way into one of the consulting rooms, she asked how I was feeling and I said fine, she asked me to recap on the eye situation (Vitreous Detachment).

She then told me that I was to be taken off the trial as I showed signs of disease progression on the bone scans I had on 4th Jan.

The bone scan showed 4 new lesions.

Left 4th rib

Right 7th rib

Right Shoulder

Lower spine

Below is an image(not great quality). The dark patches show cancerous lesions apart from the patch between my hips which is my bladder.

bone scan 4th jan 2019

This was shattering news to me that there had been so much progression although she did not know the size of the lesions.

She asked me if I had had a chance to look at the different treatment options she had mentioned the previous week.

We then had a discussion about each of them but I think they had already made their decision.

We talked about the following.

Docetaxel

Cabazitaxel

Radium 223

Lutetium Trail

and the side effects for all of these but the upshot was they wanted to put me on Cabazitaxel which is a chemotherapy.

The challenge was that we have booked a holiday late Feb/early March and no one wanted to wait until march before starting chemo so we came to a compromise that I would have one treatment next week which should give time for me to recover from any side effects prior to going on holiday whilst also starting to work on the cancer.

So it’s chemo next Tuesday followed by another bone scan in 4 weeks.

So while I am happy that we now have a treatment plan I am not happy to be in this situation, I had great hopes for the Neptunes trial and really hoped that immunotherapy was the way forward for me. I feel I have gone from potential cure to just trying to hold back cancer progression.

So I need to pull myself together and get on with things, I need to turn that frown upside down.

It’s hard but I will get there.