PSA Update 20 April 2020

Got a text from the Radiation Oncologist that the blood test taken on Friday was good and that my PSA was now 167, down only a little from 169 a few weeks ago.

And while it is not down very much, it is down 🙂

I need to get a blood test in a couple of weeks locally so we can see if this latest treatment has brought the PSA down further.

And while the PSA hasn’t moved much the news previously that tumours had reduce in size is more important.

Update 24 March 2020 – It’s beyond Prostate Cancer

Firstly, apologies for not writing an update for a while but things have been going on which have distracted me and I am not talking about the Coronavirus!

A few weeks ago, my wife Barbara was diagnosed with Breast Cancer and it has thrown me a little.  Hopefully it has been detected early and after the Lumpectomy on Thursday it will all be sorted.

Fingers crossed.

As for me mostly good news.

My PSA at last count was down to 216 which is down from the high of 1,585 and the PSMA PET scan has shown that a lot of the tumours have reduced in size, some by as much as 50%.

The most tangible piece of good news is that I now longer need to wear the Spinal Brace that I have been wearing over the last three months.  It is a great relief not to wear it as I was sweating a lot wearing it as it does not let the skin breath.  I was also using calamine lotion every evening to try and prevent get a sweat rash.

I had a funny episode two weeks ago where I was throwing up in the middle of the night, not very pleasant at all.  I suspect it was some kind of food poisoning as it was only for a couple of hours as opposed to anything more serious.

And so, I think that just about covers me for now, I do have a Coronavirus story to tell but will do that as a separate post.

Keep well people.

Staples Out

Today I had my staples out, those in my back from when I had the Vertebroplasty procedure earlier in the month as per the pic below.

The removal went very well and was done at my local GP surgery by one of the nurses.

20200110_133759

She said everything seems to be healing well and I didn’t have to wear a dressing any longer.

I still need to wear the spinal brace for another six weeks which is probably a good thing to help protect the spine.  I am also learning habits like not bending, while wearing it, and hopefully these will continue once I do not need to wear the brace.

I also got the result of the blood test I had last week, my PSA is now 409 which is good but I had hoped it would be lower given that I am three Lutetium treatments in.  My PSA back on the 19th of December was 485, so the drop to 409 is in the right direction but I had hoped for more.

Still I have my Oncology Outpatients tomorrow and so will have to see what they have to say.

I will update you all tomorrow.

Blood Test

Here I am sat in a queue at my local hospital, the Herts and Essex, for a blood test.

I am trying a different approach to save me an extra trip to London next week. The plan is to get a blood test now, locally, and to take that with me to my Oncology Outpatients appointment next week and while it maybe a few days out of date it will allow a relevant conversation with the oncologist where we can talk PSA etc. And if they want their own blood test I can do it on the day while I am there.

In the meantime there are only 15 people in front of me.

The actual blood test was quick and painless although it took two attempts as she couldn’t get into the vein in my left arm.

Just need to pick up the results next week when I get the clips/staples removed from my back.

 

Neurologist Appointment & Scan

Today is a two hospital day, first stop is the National Hospital for Neurology and Neurosurgery to see a consultant about my back and then I am off just down the road to The London Clinic for my post treatment scan for the Lutetium treatment I had on Tuesday.

So after a train ride and a taxi I arrived at my first destination and checked in. I didn’t have to wait long and I was told to go and get an X-Ray done.

So back outside and down the road to another entrance where I sort out directions to the X-Ray department which like in a lot of hospitals was downstairs.

On arrival I wait a few minutes and was then asked to change into a hospital robe which I did.

The X-Ray was to be of my whole spine and so I would be standing for the X-Ray. After some careful positioning I was given the thumbs up and the room emptied and the machine whirled. First picture done I was then turned sideways and another image was taken.

Then it was a quick case of getting dressed again and I made my way back to the waiting room.

Two minutes later I was called and met my the consultant’s CNS (Clinical Nurse Specialist). She would be carrying out the consultation.

She started by asking lots of questions about how I was, what had happened and so on.  She showed me the X-Ray of my spine, please see picture below with the circle around the damaged (Wedge Shaped) T12 vertebrae.

Spine Close Up

I must say that it was a little scary seeing how compressed the vertebrae was and while she said it would reform it’s shape a little and that the disc’s above and below would grow to fill in the gap it still causes me great concern.  As does the fact that the vertebrae above and below are at high risk of a similar type on fracture.  I need to be very careful.

The CNS gave me an examination and a check over.

She went on to say that the approach to healing was time and rest and that I would need to wear the spinal brace for at least 3 months.  There was no surgery that could be done and to some extent I am relieved that surgery is not on the agenda.

I will just have to be patient.

After the consultation was finished I made my way over the Devonshire Place and the London Clinic for my Lutetium Post Treatment Scan.  I am getting to be an old hat at this now and knew exactly where to go.

I didn’t have to wait long to be called in.  Getting on the scanner bed was a slow process due to the pain in my back but it was nothing like getting off after 30 minutes of lying on my back.  I needed help from the staff and I asked them to move me slowly.

On my way out I bumped into my Consultant who said she had seen the blood test and was pleased with the results.  She was going to review the image from the scan.

She later text me and said that the scan image was even better than last time and that some trouble spots shown previously have disappeared completely.  Together with the fall in PSA she felt this was really encouraging.

This is of course excellent news and the best Christmas present I could get and really this is only after 2 treatments and hopefully treatments 3 and 4 will help even more.

Merry Christmas Everyone.

Lutetium Treatment 3

Back home after a long day at the hospital, well The London Clinic to be precise.

The day started early and we had chosen to get a taxi to the hospital as I couldn’t face the train journey in rush hour with the brace on although with the power of hindsight it may have been the better option as the taxi took nearly two hours to get to the hospital with all the rush hour traffic.

So eventually we arrived and checked in, we grabbed a quick coffee before we were shown to my room.

And then as usual nurses and other people started to arrive to do blood tests, fit the cannula, and so on.  For me the main thing was getting my breakfast order in as I knew they were not the quickest and by now I was feeling peckish!

20191217_104527

At about 11 am my Radiation Oncologist arrived and she asked me how I was and so we chatted for about 15 minutes as we caught up on my back and other things since the last time I had seen her.  She then asked the duty doctor to give me a quick check over.

The duty doctor listened to my chest and breathing and then gave me a quick check-over.

All good, or so I thought.

My Radiation Oncologist returned and said that I had an irregular heart beat but we would still go ahead with treatment!

Well if my heart wasn’t beating fast before it was now!

A nurse appeared with an ECG machine and I was hooked up up to it and a paper print out spewed forth from the machine.  My Radiation Oncologist looked at it and said all looked good, there was a minor irregularity but nothing to be concerned about and she would add it to my notes.

By now I was hooked up to the drip and a saline solution was slowly dripping into me.

And then the physicist arrived carrying a small white box and while it was small you could tell by the way he handle it that it was heavy.  It was heavy as it was lead lined to protect everyone from what was inside. And what was inside was my small syringe of Lutetium 177.

The photograph below shows a picture of the drip with a white cylinder attached to it, this is partially filled with saline solution and then the Lutetium is added to the saline.  The cylinder is then topped up with saline.

20191217_104506

Once everything is ready then I was switched over to the second drip with the Lutetium and it started to flow down the tube and into my veins.  The actual infusion of the Lutetium doesn’t take long at all.

For those that like a little detail I received radionuclide therapy and the isotope was Lutetium 177 with an activity of 7400 MBq.  The measured exposure rate was 14 microSieverts per hour at 1 metre.  The effective half-life of the isotope with in the patient is 3 days.

While I think I understand all of the previous paragraph I will do a little reading up on this so I fully understand what has been written.

And then it was all over.

It was barely midday and the treatment part of the day was over, now it was time to let the treatment settle into my body and make sure there were no immediate side effects.  It was also time to let the radiation decay a little so I could join the general population and make my way home.  I was told I would be able to leave around 3.30.

To me that meant nap time!

Nap time included a number of interruptions as different people checked I was OK, and an interruption that I didn’t mind which was lunch which consisted of an Irish Stew that I had chosen early.  Because of the radiation all of my food and drinks is served in disposable containers and with disposable cutlery as regular crockery and cutlery would become radioactive over time.

So while the Irish Stew didn’t look too tasty served in a plastic container it was actually very nice.

The day ended on a little high-note as a copy of the results from the blood test I had in the morning were given to me.  And the good news was that my PSA was now 485 down from 655 a week earlier.

So to me this looks like very good news and is a good indication that the Lutetium was working.  My Radiation Oncologist had said that I will have a PET scan after treatment 4 and then do a full review of where we are in terms of my cancer and what needs to be done next.  We may roll straight into treatments 5 & 6 or delay them a little.

My own inclination at this time is to complete the course of 6 treatments so that the cancer gets a really good dose of Lutetium/treatment and gets beaten into submission.  I must ask if a further couple of treatments could be done in the future if the PSA starts to rise again and the cancer begins to become active again.

I left the hospital on a high-note with my new PSA of 485 and we made our way home.

We were given a set of rules to follow for the next few days while my radioactivity is high and these are mostly to protect my wife from radiation, these include things like not sleeping in the same bed for 3 days and avoiding prolonged close contact with other people for 3 days.  Close contact with babies and pregnant women was to be avoided for 7 days.

It had been a long day by the time we got home and I was ready for a rest!

 

 

 

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.

Another Day Another Outpatients Appointment

Back on the train again and while the title may sound a bit glib I feel this is an important appointment with a few things to catch up on.

Mainly the results from the MRI scan and what my PSA is?

So not surprisingly I am feeling a little nervous but hopeful at the same time.

Well we arrived just on time and were called forward straight away which is a first, barely time to get my thoughts together!

Today I met a new doctor, new to me that is. She spent a lot of time asking me questions and getting a feel of how I was. She also gave me an examination.

What the MRI showed was that I had a compression fracture in my T12 vertebra which would explain the pain. And while no single event may have caused it, it is likely that my bones are not as strong as they could be and subject to wear and tear.

Below is an image I have borrowed from the web which shows a compression fracture.

Image result for compression fracture spine

I do have a copy of the MRI report and it goes into some detail and will take me a little time to understand it fully.  The good news is that the reports says there is “no new foci of metastatic disease” which I am taking to mean that there is no new cancer in the spine since the last MRI, good news methinks!

Bottom line is I need to take care what I am doing and even things like over stretching may cause damage.

In the meantime I am being referred to a neurosurgeon for review and to see what can be done.

I hope this does not take too long to come through.

There was also talk about starting treatment with something called Zoledronic Acid which can help to strengthen the bones and reduce pain.  This is normally given via a drip on a monthly basis.

There are a few hurdles to go through before starting on this, including the neurosurgeon but also a visit to the dentist is needed so they can check my teeth and jaw is OK before starting on the Zoledronic Acid.

In regard to my PSA it has come down to 961 from 1167 and a high of 1585.

It also looks like my Alkaline Phosphatase has been tracking my PSA, it was up at 733 and is now 282, (normal range is 40-129IU/L).  I think this is an indication of cancer activity in the bones (among other things) and so again the fact it has come down is good.  I hope, I didn’t get a chance to discuss this during the appointment but noticed it on the blood work print out.

So this is good news and hopefully a sign that the Lutetium is working, although we won’t really know until I have a PET Scan in December.

So I need to contact the team at The London Clinic and find out when the PET Scan is and also next treatment.

I need to go back to the pain management team and talk about my pain meds with a view to increasing the MST.

And I need to watch what I am doing so I don’t damage my back any further.

Is it Christmas yet, looks like it is in London 😉.

Blood Test Time Again

Heading up to UCLH this morning for s blood test prior to my Outpatients appointment tomorrow. It’s a pain having to go up today but at least I should have a full set of results for tomorrow.

It will be interesting to see what my PSA will be and to get the results from the MRI scan to see if anything can be done about the back pain I have been experiencing.

Well that was quick and painless, literally 😁.

Only 11 people in front of me and the plebotemist was very good, hence no pain.

I also learnt that this is my 43rd blood test at UCLH, there must be at least another 30 at other hospitals, they soon add up!

Back on the train now, homeward bound.

Fingers crossed for the results tomorrow 🤞.

Oncology Outpatients 18 Sept 2019

Off we go again, back on the train to London and UCLH.

My fingers are double crossed hoping that my PSA is down from 1238 which it was at just before I had the Lutetium treatment on the 23rd August.

I also need to have a blood test at The London Clinic today as I am there tomorrow for a check up with them.

My current issues are my lower back which is causing me some pain and discomfort although pain killers do help. My left leg around the knee is tender, I might have over done it while on the cruise.

And the Shingles, while they seem to be fading the do feel itchy and tender at times, perhaps the just need time to heel but it does seem like a long time since they first developed.

So we arrived about midday for my 1220 appointment to discover that the clinic was running about an hour late.

So we went to see Danny the trial nurse who was able to tell me my PSA which was 1585, not the number I was hoping for but a slower increase over the previous month which saw my PSA almost double.

Danny also said that as I was receiving Lutetium privately I was to be taken off the trial, this did not come as a surprise!

So for now we sit and wait……..

And wait we did, the appointment ended up being two hours late!!!

We were shown into a consultation room and before long Dr Blanka arrived who we have seen a few times in the past.

We spent some time catching up and reviewing how I had been.

It was clear she had not seen my blood test results and she went off to get them.

When she returned she was with Dr Linch who then took over the consultation.

He reviewed the blood test and said all looked fine in regard to white blood count etc. Obviously the PSA had gone up but as it had been doubling we took it as a positive that it had only gone up a few hundred to 1585 a rise of 238 whereas previously it had been doubling. It was also discussed that we really may not expect much until after the second lutetium treatment.

And so the conversation turned to when that might be.

Because we have a holiday booked to Mauritius in October the debate was around whether to have treatment before or after the holiday. It was left that it would be discussed and I would be informed.

Overall everyone was pleased with how the treatment had gone and that I had shown no side effects.

And then the appointment was over, we had a prescription to collect which would take an hour so we popped over to Pret for lunch before returning.

My next Outpatients Appointment was booked for after the holiday on the 23rd.

But for now it was time to head home, we had been out much longer than I had expected.