Category Archives: Ongoing Treatment

Ipilumumab-Dose Two and Mike’s Promotion.

The next couple of weeks were the toughest to date.  Mike had started sleeping a lot, he would only be awake for an hour a day at the most and was hardly eating.  Having recently had dose one of the Ipi and the gamma knife surgery it was really hard to work out exactly what was going on.  The fits he had been experiencing seemed to subside, but he just didn’t have the energy to do anything at all.  His mood took a real dip, which was hard to experience given his normal positivity and this also made it harder to see what was actually happening.  We had trips to the GP when he was home, but he spent more and more time in the hospice.

We saw a lovely psychologist who helped us both, giving us suggestions of things we could do to help Mikes positivity return, although he was unable to manage many of the things he loved to do.  We did what we could, although i suspect that subconsciously Mike knew what was on the horizon.  We used to drive up onto a place called Kiwi Hill, which is just behind where we live (Army land).  I would walk the dogs whilst Mike sat in the car listening to music, admiring the far reaching views looking out over Salisbury plain and the dogs would be having fun all around him.  He was always keen to get out and about despite how ill he was feeling.

Adapted Dog Walking

Part of the view from Kiwi Hill

Kady Playing with Dogs, Mike in the wheelchair walking with us taking the photo!

However again his energy levels began to decline and instead of being awake for an hour at a time he could barely manage ten minutes sitting up before he was more comfortable lying down with his eyes shut, not always sleeping, as we thought!  We had to cancel another Southampton appointment as he did not feel up to the journey, which as a wife was a very hard decision to accept, but ultimately the right thing for Mike.

In the hospice he managed to perk up enough on some days to have a bath and man what a bath they have there!!  Not only was it deep and luxurious to lounge in, but it had taps that automatically stopped when the bath was run and a jacuzzi, needless to say we always had to have the bubbles on!  It didn’t have the TV, sound system and the colour changing lights that we’d had on honeymoon, but it was just the thing to make Mike feel relaxed and was the time i enjoyed most with him in those last couple of weeks.  We got to hide away from everyone in the bathroom, just the two of us and have a chat and reminisce.  It was also where we had our frank conversation about how things were looking with his condition.  As always Mike took everything in his stride and was now more determined than ever to get one more dose of Ipi.

On Friday 29th April, the Royal Wedding Day, we were due to go to Southampton for his second dose of Ipi (originally due to have been his third) .  I asked Mike on several occasions in the preceding days and on the day we were due to go, if he really still wanted to go and felt up to it.  With his true determination he was going!  So off we went on another long journey.  Boy did he do me proud that day.  Given that he had been lying down all day everyday, he pushed out four hours sat up.  With the normal delay to see the consultant, we were given the go ahead to receive dose two, on the premise that we would do no harm.  After another hour i managed to find Mike a place to lie down, so he could be more comfortable and within fifteen minutes the wonderful nurses in the chemotherapy outpatients department got him a trolley bed in the oncology day unit.  Our appointment was at 10:30 and finally at 15:00 the infusion commenced.  We got back to the hospice after a very long day at 18:00, both absolutely shattered.  How he got through that day i will never know, but it was true testament to his determination and strength.

The following day his breathing seemed more laboured and when his mum came home from visiting him she expressed her concerns to me.  I had been staying overnight in the hospice with him anyhow, just because he liked having me there and i liked being there for him, but i was also very concerned when i saw him.  He found it difficult to find a comfortable position and i asked the night nurse to help him out with pain relief, which they always did without any delay.  At 01:30 on Sunday 1st of May i looked at his colour and debated phoning his mum, i expressed this to Mike who said no don’t call, so instead i tried to contact his sister as i really was concerned and she said to call anytime.  At 03:30 i phoned his mum, he still accused me of overreacting (typical Mike), but i was taking no chances.  With his brother and sister en route from Bedford and Manchester respectively, the doctor was called into the hospice and Mike was given larger doses of pain relief and started on an infusion of medication to keep him comfortable and drifted off to sleep.  He got the job offer of his lifetime at 06:50 on that Sunday morning and whilst it was a big decision for him to make, leaving his loved ones behind, the chance of helping so many more from that paradise in the sky, was too big a privilege to turn down.

Whilst we will all miss him more than words will ever express i know he is now causing havoc up there, but watching over us all, guiding us through life until our paths meet again.

Ipilumumab or as its better known “Ipi”

All along Mike’s journey several people kept saying you need to get on the ipilumumab trial.  So when it was clear after two rounds of chemotherapy the cancer was still spreading like wild fire, and after his admission to Southampton General Hospital being unable to breathe, we were accepted into the “Ipi” trial.  We now knew that this was our final hope and Mike was still willing to give anything a go.  There was a two week wait to get accepted into the trial and for the drug to be brought in from America and then we were good to go.

3rd March 2011. Mike in SGH with blood clots on lung, chest infection and severe rib pain.

From the outset we were hopeful that it would have a good effect and were told there was no good reason that it wouldn’t also affect the brain mets, which was good news.  However we were also told that early indications in the trial reports, were that it could take anything from between three months and a year for the positive affects to show and that often tumours appeared to get worse before any improvements were seen.  This was worrying given that in a six week period Mike’s CT scans showed that the disease had significantly worsened in his existing tumours and there were new ones.  However as i say we remained hopeful and on the 18th March we went back to Southampton General Hospital to commence the Ipi.

It was a long and frustrating day.  It started with Mike having the largest amount of blood i have ever seen anyone have, unless you were actually donating it! They were checking for the routine things they do, like your full blood count and liver and kidney function etc, but there were also huge tubes to be filled to test for all the trial related bloods.  I believe a lot were looking at the immune response and it is an immunotherapy.

After the bloods we waited to see the consultant and as we all know they are never on time, however we would wait all day to see Professor Christian Ottensmeier!  I have never met such a positive yet realistic and compassionate consultant.  Most of his and Mike’s time was taken up discussing the latest Apple products on sale and debating their merit, rather than focusing too much on the cancer.  I’m inclined to agree Apple products definitely trump cancer, if only Apple had an “App” for that!

Following the consultation and formalities of informed consent etc (oh and the race for the Ipad 2 the following week), we then just had to wait to get the drug.  We were told that they were running about an hour behind, so disappeared off for a healthy lunch (BurgerKing) and two hours later were still waiting!  Mike was tired and frustrated by this point, so we enquired again as to what was happening, only to discover that we had not had any “chair time” booked.  Having never had intravenous chemotherapy, we had no idea what the process involved and so were unaware we needed two different appointments.  (Top tip for future recipients.) Anyway after many apologies we were all hooked up and ready to start the one and a half hour infusion before heading home.

It was good to get the first dose done and out of the way and we left with the dates and chair times for the next three infusions at three week intervals.  The following few weeks were more of the same, in and out of the hospice with various problems, the biggest of which was persistent constipation and we had the gamma knife surgery in between also, which really wiped Mike out.

The night before we were due back at Southampton for dose two Mike developed severe diarrhoea and stomach pain.  We had been told that this was a side effect of the ipi and we must contact the consultant urgently if he developed any side effects.  It sounds strange but i was pleased and relieved (understandably, Mike not so much), because side effects were a good sign that the Ipi was working.  Much to Mikes disappointment we got admitted to Southampton General, where he underwent an Endoscopy and Colonoscopy to look for any signs of inflammation in the bowel.  Both tests came back clear, but he was started on different steroids for inflammation in the stomach anyhow.  These steroids, Prednisone, were unusually used in combination with the Dexamethasone due to the recent gamma knife surgery on his brain.  He spent one night in hospital and slept a lot, but was adamant he was coming home the following morning.  So we collected him and brought him home where we had a few rocky days.  Needless to say we missed dose two of the Ipi just to let things settle, but Mike was just pleased to be out of hospital.

Gamma Knife Surgery

Well Mike and i were over the moon when we heard he had been accepted as a candidate for Gamma Knife Surgery under Professor Lindquist at the Bupa Cromwell Hospital in London.  The only downside was we had to wait two weeks for the appointment, where further MRI scans were needed to reassess the disease at that point and were far more detailed.  If they were happy that the tumours were still treatable, the surgery would be on Tuesday 5th April (the following day).  That two weeks could not have come quick enough.  Mike had been in and out of the hospice frequently, but managed to come home in the week preceding treatment.  Due to the fits he had been having he was being followed everywhere around the house as he would suddenly go man down and on two occasions had collapsed.  Once at the hospice and woke on the floor with all the nurses around him (one way to get all the female attention) and once at home when trying to walk from his man’s room into the kitchen, where i managed to break his fall.

He hated being followed everywhere like a child, but we were all so concerned about him banging his head if he was to fall as we had been told this would be bad news.  So asides from a couple of occasions he understood our reasons and tolerated us doing this as he was also keen to get safely to London for the Gamma knife.

After what felt like an eternal wait the day came that we went off to London.  We were warned it would be a very long couple of days, but had managed to source a hotel 400 metres walk from the Cromwell and an Army car and driver would get us there and back. (Thank you Jordan!) We left early in the morning had an appointment and scans in the afternoon and after a tense day of praying they would be able to treat the tumours, finally received the good news that they could treat some, but not all of them.  Due to their location Mike then underwent nerve conduction studies to work out how much radiation they could deliver to the tumours without doing more harm than good.  Such amazing technology, just a shame about the “should have gone to Specsavers” look!  This revealed why Mike had started having the fits as there were two major tumours sitting practically on top of the motor centres in his brain.  We finally left the hospital at 19:45 that night.  He was so tired and we had to return at 6:30 the following morning to have his head frame fitted at 8:30.

Following the fitting, he then had yet more MRI scans with the frame on to precisely locate tumours and head position for treatment and then a 4 hour wait, with the frame on, whist professionals planned how and which tumours would be treated.  Despite the cumbersome frame mike was expected to eat, drink and rest.  When we finally got the call for him to begin treatment, hooray, we were both somewhat shocked to hear it was going to take 4 hours!  4 hours locked in one position, with quiet iPod music being played that he could hardly hear and no other sounds or movement.  Mike said he was completely unaware that anything at all was happening and once an hour he would ask for a toilet break just so he could move.  At about 18:30 treatment finally stopped and the frame was removed.  Such a relief to get the frame off and be able to go and lie down comfortably, except for the very common, extreme headache that followed.  Needless to say Mike was keen to leave as early as humanly possible the next morning, after hearing they managed to successfully treat 9 of the largest tumours!

(Please note that this was written by myself, Kady Parke on Mike’s behalf.  Unfortunately i do not share his writing finesse, but felt in Mike’s memory his story needs to be finished).

A Bad Few Weeks

Well it’s been a bad few weeks that have seen me constantly in and out of Southampton Hospital or primarily the Hospice at Sslisbury Hospital. Before I go any further I have to say how great they’ve all been’ particularly the Hospice.

For the last three weeks I’ve been constantly in and out of the hospice, every time they’ve done their best to sort me out before sending me home but I only seem to be managing 1 or 2 nights at home before something brings me back in here.

Yesterday I felt rough all day, I’ve recently been brought down on my painkillers to try to get rid of an horrendous problem they’ve given me with constipation, unfortunately that brought back the problem that got me admitted to Southampton a couple of weeks ago which was difficulty breathing due to the metastasis in my ribs. Eventually I listened to Kady and got her to bring me back to the hospice so I could get back on the painkillers before it got too bad and I ended up in a blue light taxi again. Must lose this stubbornness!

Morning now, painkillers did the trick, we’ll see what the day brings….

Salisbury Hospice

Well I hadn’t heard of the Hospice at Salisbury Hospital until I was referred there by my GP.

I have to say they have been absolutely fantastic. It was my misconception that people go into a Hospice when they are near to death and to spend their last few days/weeks. That of course does happen but actually their other role is symptom relief or ‘Palliative Care‘ for terminally ill individuals.

They have really helped me out over the last couple of weeks and I am again a resident here with them helping me to try to get on top of  the fits/blackouts I’ve started having. I’d been warned when I was initially diagnosed last August 2010 that I would get fits but it’s taken until now for it to start to happening. They are a result of one of the brain tumours I have which is now growing again. It’s the most bizarre feeling I’ve ever had. Only last a few seconds but it feels like your brain is vibrating inside your head, you get wobbly vision and just lose control of arms and legs for 2-3 seconds, thankfully I’ve only piled in once and that was in the house so soft landing. Correction, piled in big time today onto concrete, thankfully only a few bruises although the dizziness is coming more and more often now. It is very frustrating.

It’s so reassuring to be in  a safe environment like the Hospice and to just know they are keeping an eye on me and tweaking my medications as necessary. I was surprised to find that considering the service they provide they are only 50% publicly funded. Please have a look at their website and if you are able to a donation would be very gratefully received

The staff and facilities are highly professional and I really don’t know what I’d be doing without them at the moment!

Outome of Bone Scan and What’s Next

Well the bone scan results were not the best, they showed that the reason for the excruciating pain that caused me difficulty breathing and brought me into hospital via the Blue Light taxi were as a result of the fact that the tumours have now metastasised (spread) into my ribs and I guess, as they grow are slowly working to fracture them. Morphine is definitely the way ahead now!!!

I was discharged from hospital on Tuesday evening after a good session with my consultant to discuss the way ahead. Regarding the ribs there may be some more radiotherapy coming my way to slow/stop the growth of the tumours there.

The outcome of the CT scans I had a couple of weeks ago show that the tumours have now spread from my right into my left lung also. Also spread into my abdomen, liver and kidneys, so really not good news. Chemotherapy has clearly not worked so we have stopped that. The way ahead now is my Consultant is trying to get me onto a drugs trial using something called Ipilumumab, which is a US drug that works to fire up the bodies immune system and hopefully use my own body to attack the tumours. Hopefully getting on the trial won’t be a problem.

They seem most concerned at the moment about the tumours in my head again, one of which is apparently now growing rapidly. That would explain the severe headaches – hallelujah to Morphine – and dizziness I’ve been getting. On Friday night I had another set of MRI scans with contrast to assess the size of the brain tumours as they are now. Because I have already had Whole Brain Radiotherapy I cannot have any more, it would cause brain damage if they used a dose high enough to be effective and they would have to use such a low dose it would be pointless. My only hope really now is something called Gamma Knife Surgery – or Stereotactic Radiotherapy – which is highly targeted/focussed beams rather than whole brain. I think the tumours need to be under 30mm in size though so it will be a bit touch and go. If it happens it will be at the Cromwell Hospital in London, thank God I was lucky enough to be able to have BUPA.

Morale – it’s been a bit up and down in the last couple of weeks, the physical symptoms that took me into hospital were a bit crushing but I’m bouncing back now. Lots of key decisions going to be made and hopefully taken forwards in the next couple of weeks so that could be a bit traumatic.

The NHS, the Army, friends, family and in particular my Mum and Kady have been wonderfully support as always, cannot thank them enough.

This Week – Not a Good One

Well I don’t really know where to start this has been the most traumatic week yet. Woke up Weds morning with severe pain in left chest just under rib cage. Progressively got worse as the morning went on, rang ‘she who knows best’ -wife of course-to say ‘help’! One times ambulance to Salisbury hospital. Chest X-Ray, ‘significant disease progression’ I guess that answers the question about whether Chemo was working. New tumours across abdomen and now in liver and kidneys, also growth of tumours in brain and right lung as well as new ones in left lung, no explanation for pain in left ribs though. Eventually felt better as the day went on so as I was due to see consultant on Thurs in Southampton and get results of CT Scans from last week, happy to be discharged.

So, Kady and I got about half way to Southampton yesterday – Thurs morning – and I started to get severe breathing difficulties again. Pulled off motorway, another ambulance trip, morphine two doses, good stuff. Met in A and E by consultant, v good as always, morphine drip even better. Another CT scan focussing on chest. Question answered, bad chest infection, blood clots in lungs. Now on IV antibiotics, here for at least 7 days. I won’t go into new prognosis, suffice to say it’s not currently very good. Still no explanation for sudden sharp pain in ribs, concerned cancer has spread into bone therefore, bone scan on Monday. So, it’s a free weekend in Southampton being pumped full of drugs. Happy happy happy days…! Not looking my best:

Chemo Cycle 2 Update

Phew it’s been rough this time around. I felt sooo sick for the first week, the problem as I found is that just started to make me feel so unwell in all sorts of other ways, it’s very debilitating and I became full on man down. Couldn’t stop sleeping, had severe headaches, the shakes and just in general didn’t really know what to do with myself or what I could do to feel better. As I’ve found before, when you start to feel like that it just sort of spirals out of control and you feel worse and worse. Eventually I saw sense (!) and as I had previously been instructed, contacted my consultant. He became concerned that I was Anaemic and might need a blood transfusion, I certainly seemed to have all the symptoms anyway.

So, yet another trip to the hospital. Had blood tested at Salisbury last Friday, thankfully turned out not to be Anaemic. Had a really good session with Dr Felicity Morgan of Salisbury Palliative Care Team at the Hospice there, where we went through my various meds again – I refer you back to my top tips, this is so important to get right, stay on top of and keep revising!

She prescribed me some different anti-emetic (sickness) medication and gave more advice on what to take and when. Within 24 hrs and with two doses of the new meds the sickness had practically gone. Amazing, within two weeks of meeting her, she’s managed to sort out my sleep pattern – after 5 months, I’m back to pushing out 8 hours a night and in bed rather than on the sofa – and my sickness. I wish I’d met her and her team a long time ago!

Feeling better now but still getting very tired. Another two weeks and I’m having another full set of CT Scans with contrast prior to starting Cycle 3. Then in three weeks I’ll have a session with my  Consultant to discuss the results. He’ll assess whether or not Chemo is working and therefore whether or not to continue with it. That’s the next big milestone!

Chemo Cycle 2

Well Cycle 2 didn’t start off as well as the first. I took the drugs expecting it all to be smooth running, then 3 hours later was doing my best impression of a teenager after a night out, hugging the toilet and vomiting uncontrollably.

Thankfully it’s calmed down a bit since then, got into a good routine with the anti-sickness medication. Appetite has gone out the window and can’t stop sleeping but that’s not all bad, need to lose a bit of weight and sleep is good!

Chemo Cycle 1 Update

Well I’m at the two week point of my first three week cycle of chemotherapy and it seems to be going okay so far. I was really quite worried about how bad the side effects were going to be but they’ve been quite manageable, I’ve had some very mild nausea but mostly I’ve slept, a lot. It’s been quite pleasant in a way after 5 months of not being able to sleep due to being hyper from the steroids.

I had to take a 5 day course of a drug called Temozolomide which was week 1 and in week 2 I was told I could expect the worst of the side effects plus a lowered immune system, week 3 is the recovery week which I’m starting now, prior to going back to the hospital next Thurs and starting the whole process again – cycle 2 of 6.

Every second cycle I get another full set of MRI and CT Scans with contrast to assess whether the chemo is working, if not they will stop, no point poisoning the body for nothing. So at the end of cycles 2, 4 and 6. Fingers crossed. If it doesn’t work it’s time to move on to drug trials.

My Mother has been staying with us this week to help out, I’m not sure how I would have coped without her, she has been AMAZING. Cooking, cleaning, tidying, making me sandwiches, she’s left me free to get on with dealing with the fatigue and just sleeping. Thank God for Mums!!!

The Hat Thief!

p.s. It’s Tough Guy this weekend which is raising money to assist in the rehabilitation of wounded soldiers, please if you can have a look and sponsor the guys who have volunteered to do this on my behalf – Link.