Post Therapy Scan and Side Effects

So I am writing this a little after the event as I have been a little poorly.

Following on from my Lutetium Treatment on the 19th February, I had a post therapy scan on Monday 22nd February, which all went fine and was as expected.

However, on the way home I started to feel a little tired and achy.  I got home about midday and had some lunch and spent most of the afternoon on the sofa not doing much at all.

Come 8pm I was feeling really fatigued and was experiencing a lot of pain especially in my back, hips, and thighs.  And so, I took some extra pain killers and went to bed. 

And while I slept through, I felt really tired and fatigued come morning and could hardly move, I needed assistance getting to the bathroom.  So I stayed in bed all morning and eventually got up at 1pm in the afternoon.  I tried to have a shower but the pain made me feel nauseous and so I gave that a miss and I had to ask my wife to help me get dressed and help me downstairs.

She was an angel and made me some lunch, which I ate and then I spent the rest of the day taking pain killers and resting on the sofa.  I slept most of it.

My conclusion was that I was suffering from some kind of Radiation Sickness from the Lutetium Treatment.  This was unusual as I hadn’t suffered any side effects after treatment before.  I also surmised that as I was given 4mg of Dexamethasone prior to the treatment this had helped me through the weekend and as it started to wear off is when I started to suffer.

And so the week continued like this, I was in pain and feeling really fatigued, it took all my efforts to get up in the morning and then all I could do was rest on the sofa.  I wasn’t able to walk the dog or do any cooking or anything.

My wife really stepped up and did everything as well as working; in many ways we were fortunate that she was working from home and was around to look after me.

By Wednesday I had text the consultant who administered the Lutetium and she called me back and we discussed what was going on. 

She pretty much agreed with my conclusion although didn’t go as far as calling it radiation sickness, more side effects.

We also agreed a plan of action which was for me to take extra Dexamethasone to give me a boost, I was lucky that I had some spare in the house.  So for three days I took 2mg of Dexamethasone (my normal dose is 0.5mg) and then for another 3 days I took 1mg before reverting back to my normal dose.

This extra dexamethasone really helped and gave me a boost, it also helped get me moving again although it took about a day to take effect.

So that was a really rough week and as I say it was unusual for me to have any side effects from the lutetium.  Next time I have some, which is due in April I will ask for extra Dexamethasone to see me through the week following the treatment and hope that keeps the worst effects away.

Going forward I have an Oncology Outpatients appointment and of course another treatment at the start of April, I will try and get a blood test done so we can see if the treatment has any effect.

MRI Results 10 Feb 2021

Well, it is 11.10 a.m. and my phone rings and indicates a private number, I suspect it is my Oncology Outpatients call that I am expecting which indeed it is.

And it is a doctor I have spoke to a few times especially over the last few weeks and he has the results of my MRI Scan of yesterday.

Not great news as he said that I have a displaced bone fragment that maybe pushing against the nerves/spinal cord hence the tingling in my toes.  He said that this fragment is not stable and could move about and so I need to be very careful.

They have referred me to a spine surgeon who will review and see what if anything needs to be done. 

On the downside they have said that I should wear my Spinal Brace once more for a period of 12 weeks and wear it for most things although I do not need to sleep in it.

They are expecting more information to come through during the course of the day and they will update me as they get further information.

They are going to email a list of “do’s and don’ts” to me with further guidance about what I should be doing.  The good news is I can still walk and so can still take Teddy out for walks.

Teddy

The MRI did not show any further information about cancer in the spine aside from what I already knew.

So now I am waiting for further information on what I can and cannot do in regard to my back and wearing the brace.

I have also had confirmation that my Lutetium Treatment, number 7 this will be, will be on the 19th at The London Clinic.

So right now it’s a quick trip into the attic to dig out the spinal brace and it’s freezing up there!!!

Update

I had a follow up call with the doctor this afternoon who said that the MRI has been looked at in more detail and they feel certain that the Spinal Cord is not compromised which is good news.

There has also been feedback from the neurosurgery team who feel that surgery is not an option as there is too much damage from cancer and from cancer treatments like radiotherapy and the lutetium, to my spine which discounts surgery as an option.

What this does mean is that they now feel that the spinal brace is more of a long-term solution which is bad news for me, mainly because it becomes uncomfortable to wear after a number of hours and it also gets damp with sweat and perspiration which in itself is uncomfortable, so I have asked if it is possible to have one of a different type.

The one I have is made of fibreglass and fits tightly around my back and chest and I am very sure it does what it is supposed to do. I have seen spinal braces online that have a metal spine and neoprene straps to provide the support and so I would have thought that something like that might work for me, it provides the support but also allows my body to breathe and is more comfortable.

Some other types of braces I have seen.

Obviously, I need to take advice on this, but it is definitely worth asking.

The other thing that came out of the call is that they want to do a CT scan to look at the integrity of the cement from the vertebroplasty procedure so I will be heading back to UCLH in the next week or so!

Oncology Outpatients 3 Feb 2021

Ok so just had my Oncology Outpatients telephone call.

In this case it was not as good as face to face as we were discussing the PSMA PET Scan that I had on the 26th January and I felt that if I would have been in the hospital I would have been able to see the image and better relate to it. That said it is much safer do the appointment this way rather than going into the hospital.

I cannot really be sent an image of the scan as it is three dimensional and needs special software to be seen.

The scan did show an uptake in activity around the area’s that had previously shown that they had cancer in them, so parts of the spine, the hips, the pelvis, back of skull which is not great news but on the plus side it did not show any new sites or much activity in soft tissue, the lymph nodes and the like.

My PSA has risen to 182 up from 150 on the 4th January and so they feel that having the remaining 2 treatments of Lutetium is more urgent and are going to look at getting that booked in.

I also said that I was experiencing increased back pain and some pins and needles in my right big toe and so they are going to send me for a MRI Scan to look in more detail at that area in my spine.

The pins and needles in my toe might indicate some kind of Spinal Cord Compression which may be caused by the increased activity in my spine.

I have had pins and needles in my left big toe for some time but that is put down to the Vertebroplasty procedure causing a little pressure on the nerves and in many ways, I had grown used to it.

I have been experiencing a few more aches and pains over the last couple of weeks but not sure if that is because I have been walking a little more or whether I have over done it somewhere or is it the effects of the increased activity.  No one knows at this point.

So Now I have another telephone call booked for next Wednesday with hopefully a MRI before that.  Normally scan’s take longer to get booked in so I would be surprised if I have had it before next Wednesday!  But you never know 😉

I also asked again about the PSMA BiTE Therapy which was mentioned as a trial at my last appointment, and it was felt that it was better to do the Lutetium first and then look at trials.

So for now it is time to wait for the next scan and see what that shows.

Cancer certainly is a waiting game, always waiting for the next scan, the next appointment and so on.

Still it is better to be waiting 🙂

Blood Test

Today I have been over to the GPs surgery for a blood test and I have to say that it went very well.

The doctor was very good and got into the vein first time and got the blood out and the vacutainers full. I was also quick to be seen, I barely had time to sit down.

This blood test is roughly at the 6 week point between my last appointment at UCLH where they are now seeing me every 3 months when I have my Zoledronic Acid treatment for my bones and the next one at the start of January.

Fingers crossed that the results will come back and show no major increase to my PSA and also nothing else to worry about.

Overall I feel fit and well and am getting around a lot better although I still use a walking stick when I go out walking.

I have tried to reduce the amount of morphine I take for the pain in my back, I now take 10mg in the morning and 5mg at night.  The are slow release tablets and cover me all day.  I did try stopping the nighttime dose but found it a little painful in bed and it interrupted my sleep so I have started to take them again.

I also take 10mg of Amitriptyline at night and wonder if I could get away with not taking this any longer. I think I will discuss it with my Oncologist in January in case there are side effects coming off it.

The Acupuncture that I had has been going well but I think it was more effective when I was having 3 sessions a week rather than one a month. So I am thinking of stopping them.

As I say I am feeling a lot better and what I really need to do is continue to build up my strength and endurance by walking more. I still need to be very careful with my back and in particular with bending and lifting as the vertebrae above and below T12, the one which partially collapsed and I had cement put in are both very vulnerable to collapse as well although I hope the Zoledronic Acid is helping to strengthen them 🤞.

X-Ray showing my damaged vertebrae.

So I am hoping the results for the blood test come back soon and show good news.

Acupuncture

Today I am off on a mini adventure!

It’s an adventure in two ways, firstly because it’s a trip out and secondly becsuse Acupuncture is something new to me. So looking forward to the drive to Harlow and to the experience of Acupuncture.

The reason for going is that I am still experiencing back pain from my fracture last year that gets worse as each day progresses i.e. I start not too bad but by the end of the day I am in pain, and I had been speaking to a neighbour who had had success with Acupuncture for easing her back pain.

And so I had been in contact with the Acupuncture Therapist and she thought she could help and so the appointment was made.

The drive to Harlow is only about 20 minutes and it was good to be behind the wheel and to see what was going on in the big wide world. The M11 was fairly quiet so I was surprised at how busy Harlow was, where was everyone going?

Anyway before long we arrived at the business park where the therapist is based and as part of the avoidance strategy she had suggested that I use the Fire Escape to enter the building to avoid bumping into anyone.  This I did, although it felt like I was sneaking into the building for some more nefarious purpose!

The therapist was waiting at the top of the stairs, we said our hello’s and she showed me to her consulting room which was close to the fire exit so it made sense to enter the building this way. I was masked up and wearing gloves as was she.

We had done a video call on Friday which covered all the questions she needed to ask and so it was straight down to the acupuncture. I stripped off my t-shirt and was asked to lie facedown on the consulting bed.

I made myself comfortable and she was quick to start sticking the acupuncture needles in me. She placed needles in my back, my ankles, my wrists and two in my head. I never felt a thing apart from the touch of her hands as she positioned the needles. She used a total of 18 needles.

Six needles in my back.
Three in each ankle.
Two in my head, I hope you can see them.

And remaining 4 were in my wrists.

And now there was nothing else to do apart from lie there and trying to relax. I was still wearing a facemask and so my face felt really hot but apart from that I closed my eyes and enjoyed the time of enforced relaxation.

One other thing happened and that was she cut my ear to let it bleed a little, she said this would help with controlling my body temperature and so help with the hot flushes that I experience.

One observation she made was that my back looked quite red, she asked if I had had the heated seat on in the car which I hadn’t. The picture below shows the redness around my lower spine. I can only assume that this is caused by the Lutetium treatment I have had or the Vertebroplasty procedure, perhaps it’s some kind of bruising. You may also be able to see a reddish square in the middle of my back, I think this is where I have had radiotherapy in the past, although that is nearly a year ago now do surprised it is still there.

The blue square shows the faint red outline of the radiotherapy square, you do need to look carefully!

Then soon it was time for the needles to come out and once more I never felt a thing.

A quick chat about my bowels followed and a warning that I might feel tired and I was ready to go. I booked another appointment for the following Saturday and I was off. I felt relaxed and at ease, my back felt less tense and only time would tell if the acupuncture has brought any benefits.

The therapist is also a herbalist and so I will be talking to her about that and where it might be able to help. She thought that it would help with my bowels which are a bit mixed up due to the steroids that I am on and she thought it a more natural approach than taking the Movicol which I take every evening.

Well it’s a few hours later and we are back home, just taken Teddy for another walk. The back certainly feels less tense and I felt less pain (or is it all in my mind?). I was puffing a bit by the end of the walk and was stooped slightly but I am so out of practice, more walks needed!

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.

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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.

Second Opinion – Second Visit

Today I have been back to The Rivers which is a private hospital for a consultation with the spinal specialist I saw on the 3rd of January.

Whole Spine

He was very good and had got hold of a copy of the MRI I had back in November and he showed us the MRI and explained what was going on, he went up and down my spine and we looked at the different vertebrae and talked about them. Overall when you look at the pictures the dark patches are not good and they show signs of cancer and the lighter ones are good and are stronger bones.

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I told him that I had the Vertebroplasty procedure last week and he thought that was a good idea and a good way forward, he thought there were lots of benefits to be had from that procedure and wholeheartedly agreed with it.

He did reiterate that going forward I will need to be very careful with what I’m doing and while the Vertebroplasty procedure will help the T12 vertebrae to some extent, other vertebrae are still at high risk.

When I see my Oncologist next week I need to ask about what can be done to strengthen the bones.  Zoledronic Acid is an option as are calcium supplements.

Post Op Update

After a very busy week last week I’m really taking it easy this week and I am very conscious of the procedure I had last week and how fragile my back is, so what I need to do now is rest and recuperate.

That said I have been taking Teddy out for short walks and doing a few things around the house, but have noticed that anything that includes bending or picking things off the floor causes pain and so I have to do everything really carefully.  I am keen to get myself back to my former self (and former strength) and do more.

My back does feel stiff at times and I noticed that the pain increases as the day goes on so it’s a warning for me not to overdo it.

In the meantime I am trying to sort out a blood test that can be done locally with my GP to save me a trip to London and also trying to get my medication rationalised so that I get prescriptions on the same day and not spread over the month.

Vertebroplasty – Discharge Day

Today I started the day early and it came as a bit of a shock as I was in a deep sleep and still a little under the effects of the anaesthetic but it was a nurse is coming round to do observations, blood pressure and so on.  I was feeling really tired after the operation the day before and the effects of the anaesthetic but I struggled and got myself awake and started to think about the day.

I dozed for a little while and started to think about when Barbara might arrive, hopefully, she would bring some tea and a light breakfast which she did.

The consultant who did the operation came around at about 08.30 for a chat and to check me out, he again said all went well and that he would like to see me in a couple of weeks.  He said they would arrange the next appointment as the one I had was for in April.  He also reiterated that I should continue to wear the brace for a further 6 weeks.

As far as he was concerned, I could be discharged but I would have to wait for the pharmacy to issue some medicine and to be discharged properly.

The hospital breakfast came late for some reason, it was served at around 09.30 which is late when you are being woken at 6 am.  I had another cup of tea and some toast.

And then we waited.

The waiting was punctuated with checks by nurses who took my blood pressure several times during the day.  I also had the dressing changed and got a chance to get a photograph of my back which shows the surgical clips that have been used although they do look like they have come straight from a staple gun!

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We also had a visit from a pharmacist who chatted through the medication I was currently on and what they would need to issue.

And we waited.

Another pharmacist turned up and when we said we had already seen her colleague she disappeared.

Barbara went out and got me a salad from Pret for lunch.

And we waited.

Finally, at around 3pm I was given a bag of medication and was told I could go.  By this time, we were packed and I was dressed, we were ready for the off.

I was really looking forward to getting home a relaxing a little, it had been a long couple of days.  I was feeling a little tender in places but hopeful that the cement would do the job and that life could get back to something like normal.

I was also looking forward to seeing Teddy our dog who was probably wondering where I had been.

 

 

 

Vertebroplasty Op Day

The day started early after a rough and restless night, please see my previous post here……….

My blood pressure and observations were done at around 6 am and I was put on Nil By Mouth as the expectation was that I would go down to theatre in a couple of hours as I was first on the list for the day subject to any emergencies………

My blood pressure was a little high and while I was feeling fine I guess there was some apprehension after all, I was going to be knocked out and was going to have needles stuck in my spine, let alone the cement!

Barbara arrived at around 8 am, I was dozing a bit and was pleased to see her. She offered to get me something but I was nil by mouth and so had to decline.

The consultant arrived around 9 am and talked through the procedure, he looked quite young and seemed very confident and knowledgeable, I felt I could trust him. He had no real feel for the timings and repeated what I had been told.

It did seem that there was a mix up over whether I could have had breakfast or not, with the doctors saying I could of and the nurses saying there was nothing in the notes so they took it as nil by mouth. And while I would have appreciated some breakfast it was too late now.

By this point I was in my theatre robes and had my surgical stockings on so now there was nothing else to do but wait.

And wait.

And wait.

Lunchtime came and went.

And wait.

I was getting peckish by now!

Finally around 3 pm a porter turned up and I was transferred to a wheelchair and wheeled through the maze to the operating theatre where I was met by smiling faces, I recognised the anaesthetist and she chatted and distracted me as others put in two cannulas and did other prep. I was lying on my back but at some point I would be turned over onto my front for the procedure with only my hospital knickers to give me some dignity!

I could see drugs being injected into the cannula and soon a mask was put over my face, they were asking me questions about holidays as I faded out and before I knew it………

I was being woken up, dazed and confused, I felt surrounded by nurses and tangled in drip lines and other monitors. It took me a few moments to get orientated and understand where I was although I couldn’t talk and was very drowsy.

I was in the recovery room and there was activity going on around me, I was slowly becoming more awake and aware and I was staving!

I was told the procedure had gone well and that the consultant would see me in the morning.

I spent about an hour in the recovery room where they monitored me and while I dozed a bit I was trying to stay aware and awake. Finally a porter arrived and I was taken back up to the ward where Barbara was waiting for me, I was pleased to see her.

I didn’t know what to do first, I was staving, thirsty and needed a wee!

I grabbed a bit of a sandwich I had ordered for lunch and a swig of sweet fanta to help my thirst. I told Barbara I was staving and headed to the loo, fortunately I was able to walk although I was a little wobbly and Barbara helped me to the loo.

By the time I came out my dinner had been warmed up and I tucked into it, it was most welcome.

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I was feeling much better now, I had been fed and watered and was getting back to normal. There was some back pain but more of an ache except when I moved, then it was more painful.

The nurses had a check of the dressing and Barbara took a picture, see above.

It was a fairly compact dressing.

By now it was around 8 pm and Barbara had to head home, I was sorry to see her go. I then settled down for some rest, did a bit of reading and so on. Nurses came and did observations, blood pressure etc which was at a more normal level and goes to show I must have had some pre-op nerves.

I had a better nights sleep but it was still disturbed by all the things that go on during the night on a hospital ward and of course when you are in the deepest sleep someone wakes you up to test your blood pressure or give you some medication, still it has to be done.

I was looking forward to the morning and being discharged and getting home.