17: Year 3 H2
So November already, dreary November and the month when we always went on holiday which broke the winter months up as they seemed to move along quickly. On the brightside I'm still here to moan about it so that will do for me.
On a more positive note, a big shout out to Kevin Sinfield, amazing man. It's hard to believe what he has achieved . Click on the image below for the MND homepage to find out more. Truly wonderful people
So it had to happen, after a year of virtually nothing happening and me writing about it something quite unexpected happened.
I have to have an Echocardiogram every six months since I have been on the targeted drug therapy (so my enco/ bini combo). This was booked for 08.30 on the 15th November. Nice early one for a change, all went well and we were on our way back home shortly after 09.00. At 11.00 I get a call from Oncology. They have picked up an irregular - inconsistent heartbeat, really? Is this just one more thing to worry me just when I had reached an equilibrium, a nice gentle neutral state, is this about to crush it all? So the recommendation is to alter my daily dosage of enco/ bini. So, no bini and only 4 enco a day. A reduction from six. No problem.
Well it was OK for a few days, then things got weird. Started with breathlessness, not a bad as pneumonitis but getting there. Then I got a rash on my torso, chest and back which started itching like mad especially at night. Everyday seemed to bring something new. Aching arms feeling really weak, my hands started to swell, eventually it became impossible to make a fist. The usual bad heads and vomiting, dizziness even more so than normal. Joint pains...and so on. By Thursday 24th I could not take anymore so we contacted the Acute Oncology Team at Southampton, ran thru the symptoms and they suggested I come in for a check up. Grabbed my crash bag and off we went. Had the usual run thru of vitals, blood and oxygen levels and so on. Then an IV of Sodium Lactate (Hartmann's Solution) for twelve hours. Ended up staying and being very well looked after for the next three days but I wanted to get back home asap as our Granddaughters are down to see us and I would prefer not to miss them. Got out and back home Saturday evening. All is good and I get to see them till Sunday PM went they returned home. They'll be back for Christmas so not long to wait.
Here I am back home with my two little friends, cute as you like, love them to bits 💝
I then struggled through the week with another altered meds regime. Back on enco/ bini again, back to four enco and only two bini, one in the morning and one in the evening. After a few days it started to feel OK again.
I had to attend the Oncology clinic the following Thursday. All appears good and progress has been good since the weekend. They have prescribed two new meds to look after my heart
I'll copy this from the original Discharge Summary
He has a background of Metastatic Melanoma and in the past was started on Encorafenib/Binimetinib. Binimetinib was stopped in clinic two weeks prior to admission due to recent Echocardiogram changes.
MRI brain and CTPA in September 2022 showed no disease progression.
He denied fever, cough or chest tightness. Examination showed some rashes on chest and back while rest of examination was unremarkable.
Chest X-ray was unremarkable while echo showed Dilated Aortic root, dilated LA, normal LV systolic function and an EF of 60-65% compared to EF of 45-50% ten days ago.
His Encorafenib was stopped. His prednisolone was increased from background 15mg to 20mg. On discharge we aim to reduce this back to normal 15mg after 5 days.
On admission lactate 2.7, metformin held. Repeated and 1. Diabetes team suggested restarting with a normal lactate. Sugars 8-11. Has a planned diabetes review via GP 02/12/22. His symptoms are resolving and he has been started on Bisoprolol 1.25mg daily. Plan is to have a GP review in 1 week and to start Ramipril 2.5mg daily. Clinic on Thursday 1st December 22 with an aim to restart encorafenib and binemitinib at reduced doses.
So that all sounds straightforward !
This also falls in with my quarterly check ups, Thursday's clinic was followed by MRI on the 3rd and CT on Wednesday 7th. Also a yearly check up with the T2d nurse at the local surgery. Another follow up required as there is some concern over my blood pressure which is high. Follow up with GP booked on the 14th.
Then hopefully I'll be OK for a nice family Christmas.
I took me a while to get back to normal. I had another full on Migraine over last weekend so throwing up all night etc. That was with the anti-sickness tabs as well. It took me till Tuesday just to get over that. So this week I am confined to barracks, no going out, no band practice just hospital visits. Mind you, it's turned very cold this week so I'm better off inside to be fair.
I get buried in books all the time and currently reading this from Richard Thompson Beeswing: Fairport, Folk Rock and Finding My Voice, 1967–75
I do enjoy the old tales of life on the road as musicians journey through the 60s and 70s in Transit vans up and down the motorways and all meeting up with other bands at Watford Gap in the early hours of the morning for breakfast. Those guys gigged almost every night of the year, no wonder they are all amazing Musicians (well the ones that are still alive).
Therefore it's only fair that I am listening to him whilst reading/ updating my blog/ doing nothing much (i'm good at that!) or whatever.
This one here then, (thanks Rog) a wonderful 6 cd box set, click on the pic if you're interested for the details on the Wiki page.
I started thinking about my favourite albums this year, it's been a funny year and an exceedingly quick one as well. Springsteen released a covers album of his favourite Soul songs, it's very good and he does a great job on them all but I keep thinking what's the point? Wilco released their first album for three years, Cruel Country in May this year which I bought but they were unable to release the CD version due to 'supply chain issues'? whatever that means. I have the MP3 version but I'm so old school I don't feel like I own it until I have the CD in my hands. Wilco also re-released Yankee Hotel Foxtrot with an extra CD of outtakes etc. and rather good that is too. Saw them live at Black Deer and they ended up as my top artist on Spotify. Drive-by Truckers new album 'Welcome 2 Club XIII, good not great. Saw them at Black Deer as well but they were poor and the sound was awful. The wonderful Reg Meuross teamed up with Harbottle and Jonas for a beautiful album Songs of Love & Death. Sounds gloomy but it's not. The quality of Reg's release never dips. Brilliant. Also came across a Canadian band ,The Once, at Purbeck Valley Folk Festival, well worth checking out, all their albums are on Spotify. Treat yourself 😀
One unexpected highlight came from Rog again, he suggested I listen to John Mellencamp's latest album, Strictly One-Eyed Jack. I had always dismissed Mellencamp as a Springsteen wannabe....I could not have been more wrong. Brilliant album and I'd have to say probably the best I heard this year. Now I'm hammering his back catalogue and it's rather good. That will keep me going for months
One complaint though, I'm still waiting for the next Tom Waits album, his last album was in 2011 so, soon to be a gap of twelve years FFS. The Beatles entire recording career was only seven years. I've got secondary Stage 4 cancer, I might not be around for it if he doesn't get on with it quick.
No complaints with this one though. Looking forward to a scheduled release of the next in Bob Dylans marvellous Bootleg series #17 The Time Out of Mind Sessions. Due at the end of January so not long to wait.
Today I had my quarterly Oncology review.
When you enter the Consultants office and there is nurse sitting there as well, it more often than not means bad news is coming your way. So I guess this was not as bad as I initially thought when I saw the nurse.
The tumours on my Pancreas have grown, this is the first time they have grown since starting enco/ bini. I'm now scheduled for a PET scan to identify the extent of the growth. So PET scan, that's a new one for me. Plan after is for SABR radiotherapy to treat the tumours.
Both of which I know absolutely nothing about so some links are required
https://www.cancerresearchuk.org/about-cancer/cancer-in-general/tests/pet-scan
Sad news in November as two absolute legends lost their fight.
Obituaries below which will tell their story much better than I can. Good bless them both
PET Scan was on 23/12, it went very well despite all the stories of radio active injections and issues. It was a breeze and far less impact than the contrast for the 3 monthly CT scans.
In response to my heart issues from the Echocardiogram I have more meds to take daily. I have almost lost track of all the meds I take, just as well that Annette looks after these for me. So, to add to the list then Bisoprolol @1.25 mg a day and Ramipril @2.5 mg a day. Both had an immediate impact as they reduced my blood pressure and a rather loud heartbeat (noticeable at night in bed trying to sleep). I'd always assumed that both issues were caused by my steroid intake. Apparently not then.
Things moved rather quickly in the new year. For the SABR treatment I was transferred to the Churchill Hospital in Oxford, a bit of a drive up the A34 but not too far. I have been rather fortunate in that I have not had long journeys for my treatment, about time I had to travel!
The first appointment was to meet the Consultant to run through the procedure and it's impacts. I will need five visits for treatment on alternate days so we'll need to plan how we do this. It's probably easier to book a hotel or an Airbnb for the duration. With the price of petrol it will probably be cheaper 🤣
This was followed up by another visit a week later to 'measure' me for the SABR treatment. It was a long day with lots of waiting around. The measuring bit took about 45 minutes which was actually rather interesting, well I thought so.
In the middle of a bad few months as people I admire keep dying, I wish it would stop! Obituary from the Guardian on the link below.
He was awesome! Sad day.
John Mellencamp: Save some time to dream
Source: LyricFind
Songwriters: John Mellencamp
Save Some Time to Dream lyrics © Sony/ATV Music Publishing LLC
Nothing much else to report on at the moment apart from my sleep. I managed 9hours 28 minutes last night and my weekly average this week is 9 hours 2 minutes. My body must need it, is all I can say. I'm rather enjoying it after years of 5 or 6 hours every night.
The booking from Oxford confirmed five dates from the 31 Jan to 10th Feb on alternate days but no weekend sessions. We booked a very cosy 3 bed house in the Wood Farm area of Oxford. Only a fifteen minute walk to the hospital or a bus from the top of the road. The first two sessions went fine and it is usually the next day when I feel slightly off, tired with a weary head but no full on bad heads at all.
On Friday we drove up to Hook Norton to catch up with Friends and spent a very relaxing, lazy afternoon.
Friday was going OK till I had a stomach upset around 23.00 with lots of vomiting. I seem to be getting quite used to it now I guess. This was fortunately the only episode. Still, the extended weekend off!
As we had a 3 bed house the family decided to join us (with the exception of Aislinn who is coming on Tuesday and eight months pregnant) over the weekend so lots of fun throughout it was great to see them all. Mairead came on Saturday and we spent the afternoon watching the 6N Rugby
My SABR friend for two weeks and a Family Sunday stroll
So a really nice weekend with the added bonus of tickets for Fairport Convention on Sunday evening at the Oxford Playhouse then ready for another week of SABR.
Week two rattled away rather too quickly really, three trips for SABR and no issues. We visited three museums, Ashmolean, Pitt Rivers and the Natural History. We'll have to go back as we never had enough time in either of them. On one of our walks we came across a second hand instrument shop which are always worth a browse (you never know!) Hanging up high behind the guitars was a very lonely Phil Davidson Mandolin, these are very expensive handmade mandolins. So I asked how much he wanted for it and he smiled at me and asked me did I know how much Phil Davidson mandos go for? I smiled and said yes, he said 'make me an offer' so I said £250 so he just smiled at me, I think he was trying to suppress a laugh so I left him to it. Well, it was worth a try, you never know until you ask 🤷♂️
We had a really good time in Oxford, lovely place for a 'City Break'. Lots of easy walking and the bus services are brilliant, encouraging people to leave their cars at home. So lots of walking and discovering the City. And the weather was awesome for February in the UK, cold, clear, sunny days, perfect for walking. Back home on the 10th. Not much to going on post radiotherapy but a follow up meeting at the Oncology clinic on the following Thursday. One thing I am really noticing is my heart rate and breathlessness, somewhat concerning but I do have an Oncology review on March 9th so let's see how it goes.
The Oncology Q review then... They needed to keep me in for a few days for tests. A further Echocardiogram was required, It's still not quite right is it. Fortunately they discharged me on Friday, the thought of another weekend in Hospital did not fill me with joy. I had to go back again for a review and catch up at the Oncology clinic the following Thursday. Unfortunately they wanted to keep me in for further tests.
However, we agreed that not much would happen over the weekend so I was asked to check in on Sunday evening for scans and tests starting on Monday. So a nice hospital stay for four nights and lots of activity. I had a MRI on my heart during the stay to see if there is any lasting issues.
I'm still very breathless though so a further CT scan on my lungs was required. Both scans on my lungs proved that they are clear, no blood clots etc which, whilst being comforting news, the underlying issue remains unknown.
The end result is that: a) The enco/bini combo is impacting the efficiency of my heart so we need to change cancer meds: b) I need extra meds to deal with my heart issues.
Cardiology prescribed 25 mg Spironolactone and 10 mg Dapagliflozin however we discovered that Spironolactone was not recommended for Addisons disease and Dapagliflozin was not recommended for T2d. We discussed with Oncology and they discussed with Endocrinology who recommended I take Spironolactone at a reduced dose of 12.5 mg.
Oncology prescribed new cancer meds - 75 mg Dabrafenib, take 2 twice daily
So we're all ready to go and I come out in an almost full body rash. It started with the same intensity as I had during the ipi/nivo Immunotherapy infusions but then got worse. My torso and arms were covered in raised spots which were tormenting, so itchy. I rang the Oncology team and they asked me to come in (yet again). It was a Saturday so quiet in the hospital and I was seen straight away. First was a blood test to determine if there was an infection, no infection I'm glad to say but they suspect an allergy. I was prescribed Dermol200 which you rub in pre shower then wait for two minutes and shower off. Cetraben cream post shower and Mometasone Furate ointment, to apply before bed. That's enough to be getting on with. I now have an appointment with Dermatology to check for allergies. Two weeks later and it's under control. The Cetraben was also prescribed during the SABR at Oxford Churchill so I'm assuming that the rash was a legacy from the radiotherapy, we'll see. The issue for me is that I have not been able to start my new cancer meds as I had to wait until the rash was fully cleared. So I finally started the Dabrafenib on Tuesday 18th April. I have essentially been off any cancer meds since around 20th January, so pleased to finally be back on them.
Not for long then....I had two issues since I have been on Dabrafenib. I wake up in the middle of the night and all my joints and muscles are screaming, it hurts to move, agony, but very slowly over the morning it eases so by lunchtime it has cleared. Then my blood results came back with some highlights so they asked me to hold on the cancer meds and repeat the blood test next week to see what that shows up. We wait again.
Oh and my Dermatology appointment has been pushed back again till May
After three years of Thursday nights MelanomaMates Zoom call we finally decided to meet up in Leeds as it's kind of central I guess. It's a long journey from the South Coast so we left on Thursday to catch up with daughters and granddaughters in Bedfordshire on the way. Completed the journey on Friday. We spent Saturday morning wandering around Leeds city centre which is very nice, just a relaxing morning with nice spring weather.
We met up with the team late afternoon for pre dinner drinks followed by a cracking meal and just catching up with everyone. It was Annette's first time in contact with most of the group and it confirmed what I already knew about the group, they are all lovely people.
I managed to make it to around 10.30 but had to go as my batteries run out very quickly in the evening.
So a big thanks to Mr. Wilson for taking the time and effort to set this up and thanks to everyone who made it. We must repeat again soon and not wait for another three years"