Category Archives: Ongoing Treatment

Outcome of CT Scans With Contrast Taken 23 Dec 10

Some of you may recall that after my failed Chest Biopsy just before Christmas – which is what has been delaying the start of my Chemo – I insisted on having another full set of CT Scans with contrast. My concern was that it had already been two months since the last (second) set of scans and we needed to re-assess how my cancer was progressing. Well I had that second set of brain, chest, abdomen and pelvis scans on 23 Dec. I received the back brief yesterday whilst at the Chemo ward:

CT Brain with contrast – conclusion was that the Whole Brain Radiotherapy has had a partial response with reductions in lesion (tumour) size and associated swelling in my brain. I have three sizeable tumours as well as a number of ‘small enhancing nodules’.

In summary this is cold clinical speak that when translated actually means this is a really good result!

CT Chest, Abdomen and Pelvis with Contrast

All of my lung nodules (tumours) have increased in size. There were originally five, I have now developed an additional two bringing it up to a total of seven. All of this is very disappointing but not surprising as they have received no treatment until we start chemo today. This is why it was so frustrating that there was such a delay in getting my biopsy as that then delayed the start of chemo. It is hoped this will now reduce the size of these tumours, however, realistically I have been told there is only roughly in the order of a 20% success rate with Malignant Melanoma.

Ho hum, fingers crossed for the chemo, I’m going into hibernation again so I can be as strong as possible in the next 1-2 weeks to give the chemo the best chance. Hopefully I will be in that 20%, if not there are still other options which lie in the realm of drug trials.

Two cycles of chemo to go, six weeks and then another full set of scans and we shall see where we are at!

Chemotherapy

Kady and I spent yesterday 13 Jan at the hospital getting a day of tests – chest X-Ray and various others as  well as a full run down on the Chemo that I am to start today. I am lucky in that I am taking my Chemo as a course of tablets at home rather than having to sit in a ward receiving a drug infusion. I’ve been using my own drug chart for some time as with my Radiotherapy induced confusion plus the sheer amount of tablets, it has been easy to forget when to take them. As I now have an additional humongous supply of Chemo drugs to take every day as well as additional other drugs to counter the known side effects, I’ve drawn up a new chart, see here 20110114 Drugs Chart Cycle 1 of Chemotherapy

I spent a hugely entertaining evening last night reading every single drug leaflet, working out timings for taking them. There are so many considerations, before/after meals, in the morning/evening, once a day, four times a day, separated by 12 hours, the list goes on. I got there in the end and even managed to leave a couple of hours in the morning and in the afternoon where I might actually be able to do something other than clock watch and wait to take more drugs.

The team at the Spire Hospital were very informative and I feel well prepared for this, first hit of Chemo drugs is 0800 today, I just want to get the next 24 hrs over so I start to get a feel as to whether this is going to make me feel utterly horrendous or hopefully, be one of the lucky ones that it barely affects, we shall see. It’s a three week cycle which starts with 5 days of taking the drug then a downhill slide (apparently) in how you feel, rapidly reducing immune system and constant taking of your own temperature. At the first sign of feeling ill or temperature then it’s call the Chemo Team and possibly an Ambulance job. At the end of each cycle another trip to the hospital, another chest x-ray to measure effectiveness of chemo, or not. After every two cycles another full set of MRI and CT scan to get a more detailed measure of progress, or not. All of this will go on up to a maximum of six cycles or 18 weeks.

The Chemo suite at the Spire was out of this world, Kady and I couldn’t believe it. The ‘Captains’ chair I got to sit in was like something out of a Syfy movie! If I were receiving a drug infusion, this is where I would want to be getting it!

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CT Guided Needle Biopsy Round 2 – Outcome

Well firstly Happy New Year everyone! I spent most of the evening asleep on the sofa – I am crazy – and woke just after midnight. It’s been a rough couple of days however a very quick update. CT scans last week revealed the development of an additional tumour in my chest, I now have five which is disappointing. As previously mentioned, not entirely surprising as they have had no treatment as yet, however that’s about to change…

Second chest biopsy which was on Wednesday and has made me feel so rough the last couple of days was a success, phew! It has achieved it’s aim and confirmed that the cause of all this nastiness is indeed as suspected Malignant Melanoma. Location of the primary site is irrelevant at this stage, apparently the horse bolted months ago. Spoke to my consultant yesterday – 1800 on New Year’s Eve, there’s dedication for you – and will be seeing him next week to discuss commencing Chemotherapy to start tackling these chest tumours. Will probably start week after next, it’ll be a relief to be moving forwards.

I think that’s all for the moment. The second chest biopsy was done by the top man Radiologist at Southampton, Dr Ivan Brown. What a nice, kind, professional and helpful gentleman, it was a completely different experience to the last one and mission accomplished too! Between him and the Nursing Sister Denise who looked after me, I couldn’t have been better cared for.

 

CT Guided Needle Biopsy – Round 2 Weds 29 Dec 10

Well, after the last failed biopsy two weeks ago, fair credit to my Consultant Professor Christian Ottensmeier who has really pulled it out of the bag, I am to have a second lung biopsy tomorrow morning. Really not looking forward to it, particularly now that I know what’s coming however it’s a necessary evil. Planning on a quiet New Year’s Eve as I’ll no doubt be in rag order again. If this one gets a viable sample for analysis then hopefully I’ll be on Chemo by the end of the next week. Be nice to feel like we are progressing.

Professor Ottensmeier also managed last week to jack up some more CT scans with contrast of my head, chest, abdomen and pelvis which took place on Thursday. Hopefully I’ll get some feedback on those this week. It’s been over two months since the last ones and it will be good (I hope, could be bad) to do a check on where we are at with my tumours. Anticipate the ones in my chest will have continued to grow as they’ve had no Chemo, hopefully not too much. I hope the ones in my head will have stayed static but we’ll see.

Will update all of the above when I feel better hopefully by Friday. Later everyone, keep enjoying the seasonal festivities!!!

CT Guided Needle Biopsy Outcome

A frustrating day. After going through the biopsy last week and having been assured we would have the results by this Monday then fighting all of this week to actually get them, it transpires the procedure was unsuccessful and they were not able to get a sample from the tumour. Appears we were in the 15% bracket so bad luck really. Very disappointing considering how painful and uncomfortable it was.

Kady and I are extremely frustrated, having originally been told it would only take two weeks from the original Multi-disciplinary Team Meeting,  then patiently waiting before harassing people, it took over 7 weeks to finally get the biopsy done. We are now in the position we dreaded; up against Christmas, requiring more time at hospital and no nearer the 100% diagnosis which will allow us to start Chemotherapy, with the tumours in my chest continuing to tick over and grow having still had no treatment.

Thankfully my new consultant Professor Christian Ottensmeier has been incredibly forward leaning and helpful. He is currently trying to organise another CT guided needle biopsy procedure for next week, no easy task at this time of year. He is also arranging for me to have another complete set of CT Scans tomorrow.

We are extremely grateful for what he is doing for us, still frustrated though because of where we are and the days in the diary over the next week that are rapidly disappearing. To lose 7 weeks as we have done is infuriating and now the additional complication of the failed biopsy. We’ve felt really bad about turning down invites to things overXmas, it appears that may well have been a wise move now as the diary is rapidly filling with med stuff .

We are also both utterly exhausted as well, Kady has done nothing but run around like a lunatic for the last week, I pushed out a whole 2 1/2 hours sleep last night and the night before and the night before etc…To say I feel drained would be the understatement of the century, I can’t even muster the will to describe the level of fatigue I’m at.

On the plus side visit to fertility clinic went well, I don’t know where I got the energy, it was a case of chin tucked firmly into strap and run for the hills to get it over with. My ‘count’ is not perfect due to the effects of the various cancer drugs I’ve been on for four months,  but apparently I have sufficient swimmers for them to work with. Tick, happy.

CT Guided Needle Biopsy

Well today’s the day at last, just on way to hospital now for CT guided needle biopsy. Basically they’re going to stab me with a big needle through my back to get to one of these tumours. Not too worried about it, looking forward to the lie down to be honest then the big feed afterwards, nil by mouth is rubbish!

Hopefully barring any complications will only be in for the day, will update tonight. This will give us the 100% diagnosis hopefully results by Monday, which will kickstart Chemo in the next couple of weeks, Happy Bloody Xmas!

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Well it was all pretty straightforward and we were in and out within a few hours. Was not the most pleasant experience, they lay me on my front, numbed me up and then it was in and out of the CT Scanner about 6 times. They drew on my back marking where they were going to stab me, another scan, stabbed me with scalpel, another scan, inserted a metal rod, scan, needle, scan, took sample. Jesus it hurt! It literally felt like someone poked a finger through my back and I swear I felt it trying to come out of the front of my chest. Chest instantly filled with fluid and then uncontrollable coughing. The bit I hated the most is that obviously you can’t see what’s going on and they’re not very good at talking to you. However, the Doc showed me the CT scan afterwards and apparently they got a good sample so worth it – CT Guided Needle Biopsy

I was full on man down feeling ill for about 45 minutes afterwards as you’ll see from the photos where I have my eyes closed, blood pressure dropped, massive hot sweat, felt really unwell. Thankfully by the one hour point I felt remarkably better and was able to complain sufficiently to get cup of tea and an egg sandwich from Kady!  2 hours later, a chest x-ray to make sure my lung had sealed itself up then we were on our way home with strict instructions to rest and call an ambulance if I got any of the symptoms of a collapsed lung.

Ha, not easy to rest when you feel like you’ve just had a rib broken and spontaneously developed the worst chest infection ever. Anyway, by the next day I felt almost completely okay, just a bit battered and bruised.

So, that was that, results on Monday hopefully and with those we can finally start Chemo. Hoping to delay that until after Christmas day though.

As always the staff at Southampton were fantastically helpful and friendly. Thank you blog followers for your support too and for holding off from harassing us, sorry it’s taken me a while to get back on here, needed a couple of days to get some energy back.

There will be another update later this week as  we are going to have the ‘Great Sperm Bank Adventure’! Not one I’m looking forward to but if you’ll pardon the pun I’ve got to squeeze it in(!),apparently chemo is likely to make me infertile for an indeterminate amount of time and neither of us have any children. I shall avoid giving too much detail though if you don’t mind…

General Update 2

Well it’s been a tough couple of weeks. I’ve gone from 3 months of only being able to squeeze 4-5 hours sleep a night out despite the best drugs on offer, to in the last 2 weeks sleeping 20 hours a day. I’ve also developed a new infection in my bladder – excessive urination, feels like you’ve been kicked in the nuts every time you sit down – which has not been pleasant. This is on top of the oral thrush which I’ve had for at least 2 months and drugs can’t seem to shift, makes me feel like I’ve been gargling sand and I have to say leaves your mouth tasting even worse than after a night of beer, cigarettes and kebab with garlic mayo (mmmm) – I can still just about remember those…

I’ve been trying to see the funny side of it however alas as the last couple of weeks have gone on it’s become harder and harder as I’ve reached depths of exhaustion even Sandhurst never got me to. Anyway my wonderful GP and an excellent dentist now seem to have got me on the right antibiotics and they are helping, thank God. What a relief although I still feel like Buster Gonad.

I also have a wonderfully caring wife who this week has taken a grip of various medical issues which with how I’ve been feeling I’d lost the will to follow up. For the first time since this ‘adventure’ began, in the interest of splurging my personal thoughts into the public domain, I will admit that at one point (actually a number of occasions, be honest Mike) I found myself thinking maybe no treatment would be better than months/years of feeling this crap – I know I know, mental slap around own face. Golden opportunity to learn how to talk to wife more, I’m trying.

Kady spent a day harassing the NHS to death and after FOUR weeks of nothing, finally got a date for my lung biopsy – 16 Dec. She also took the decision yesterday to discuss my severe downturn over the last couple of weeks with the Oncology Dept at Southampton who in light of everything asked for me to be admitted immediately. So a bit of a mad panic and a day of getting checked out in the hospital, was not overly impressed when I arrived on the ward and their first words were ‘you will definitely be here all weekend’. ‘We’ll see about that!’ I thought to myself knowing full well nothing happens in hospital at the weekend. Anyway they were wonderfully helpful as always, fantastic Doctors who always take the time to explain things and I got the full MOT.

Outcome – home by 1800, crack on with the antibiotics, I’m not about to drop dead, nothing sinister is going on however directed to increase my dose of Dexamethasone – steroids booooo – to get rid of the pressure headaches which were returning and will also give me some energy back. Makes sense but I did discuss (barter) with the Doctor about just how much to increase them by, we reached a compromise, it’s a balance of symptom relief without increasing the horrendous side effects.

It appears the explanation for my sudden and dramatic loss of energy and ability to stay awake is down to something called Hypersomnia or Somnolence Syndrome – Link – I was originally told this would hit me 2-3 weeks after Radiotherapy finished which would make it early October, it never did. I attached no significance to that as they did say not everyone gets it and I was also having a great time getting married and honeymooning. Well turns out for some people it can be 2-3 MONTHS, that’s me! So, non-sinister explanation for how sh*t I’ve been feeling for the last couple of weeks, that on top of the two infections. Morale not the best at the moment but Kady and I working on that and as always I know there are people far worse off.

One major lesson for me, again, I keep being too nice about accepting well meaning invitations to pre-Christmas events. I simply haven’t got the energy at the moment and am about to turn off ALL invites, I need to hibernate until my biopsy on the 16th, that’s got to be my number one priority. Really appreciate everyones’ care and concern, comments on here are fantastic – in fact more please – but I would ask that people avoid phoning or asking me to go to social events, boozing and being in crowded rooms are so far off my radar you wouldn’t believe it, who’d have thought I’d ever say that! I’m not being rude, but I need to beat these infections, get through this somnolence thing and be as fit as possible for my lung biopsy.

General Update

I’m conscious of the fact that I haven’t posted anything for some time so thought I would put a general update on here as to how I’m doing at the moment.

Well it’s been a busy couple of weeks. Week before last I thought I’d make a surprise journey up to Manchester to see my Nan who has been ill in hospital – thankfully she’s much better now and was delighted to see me, loved the wedding photos which I was able to dazzle her with on my iPad, for 89 she is an amazing lady – as well as surprise my Mum who wasn’t expecting me either, she loved it! Was nice to be see everyone for a few days although not to be constantly rained on, comes with the territory in Manchester though! It was also on this trip that the Second Great Tattoo Adventure occurred. I enjoyed getting the train up, first time I’ve been anywhere on my own since my diagnosis and loss of driving license at the end of August, it was extremely liberating and I almost felt like I was clawing back some of my complete loss of independence.

My Mum traveled back down with me for a week of staying with us, unfortunately she seemed to bring the bloody Manchester weather with her. This has curtailed our activities a lot although we did manage a good session of wandering around the shops on Tuesday and Salisbury Cathedral today – I’ll get around to putting some pictures on here. Hopefully she’s not been too bored.  It’s been lovely to have her around helping out even though I’ve not been feeling my best.

I am still waiting out for news on when my lung biopsy is going to be and how they are going to do it. I know the Chest Cancer Multi-Disciplinary Team have discussed my case and have agreed they are able to do the operation so now I just need the details. My Neuro-Oncologist Dr Geoff Sharpe is chasing them and I am to chase him again – upon his instructions! – on Tuesday. It’s a little frustrating as all of this will have knock on effects measured in the order of weeks for post-op recovery and then Chemo. We’ve tried to plan a number of things between now and Christmas such as a trip to Germany and of course Christmas itself, but I’ve a feeling we’re going to need to completely tear up the plan and start again once we find out about exactly what’s going to happen and when. Christmas if Chemo has started will probably be one spent in isolation at home due to the destruction of the immune system that the treatment causes.

I’m still regularly being asked how I am feeling by lots of well meaning people. Unfortunately answering that question a multitude of times every week by text, email and telephone is still as tiring as it has been for the last 3 months, please subscribe to updates from this Blog!!! I know that sounds harsh and I am incredibly lucky to know so many people who care so much and I am not at all ungrateful for that, but answering all the questions is genuinely adding to my exhaustion and at times, I know it may sound pathetic, making me feel very stressed out.

So, to answer the question of how am I doing, well my default position is that I feel utterly, drained and exhausted all of the time. Occasionally I have a burst of energy but I find that afterwards I am even more exhausted for hours and sometimes even days. To give an example my three day trip to Manchester wiped me out for four days afterwards and our 24 hour sailing trip a few weeks ago knocked me out for five days. I know it’s hard for people to understand but this is all a result of the drugs regime I am on which is still disturbing my sleep – I haven’t had a full nights sleep for nearly 3 months now – and makes me want to punch anyone who tells me I look tired or has the audacity or blind ignorance to ask me why I am tired! Yes I have tried everything possible, drugs from the Doc, natural remedies etc. but my Consultant tells me the sleep situation will not improve until I am on a low enough dose of Dexamethasone – steroids. However, it is this drug which is currently stopping my brain swelling and therefore preventing the headaches and reducing the risk of seizures and subsequent death. So all in all a catch 22 situation!

All of this is notwithstanding the concurrent and quite considerable side-effects of the Radiotherapy which I have described elsewhere but has left me feeling so tired I can’t even begin to describe it. The other knock on effect of the Radiotherapy is that it has dulled my hearing, I guess the hairs that form part of the hearing system in my ears have gone AWOL along with the ones on my head. I can also feel that my thought processes have slowed, I am getting confused at times and I can’t begin to describe how frustrating that feels especially when I can’t do anything about it. I often feel at the moment like thinking equates to trying to run through treacle. Being in a crowd of more than about two people talking just blows my mind as I simply can’t keep up with the pace of the conversation, it’s all somehow like being the drunk person in a room full of sober people, just without the fun element.

I started off in August upon my initial diagnosis on a massive dose of steroids of 16 mg (8 tablets) a day. Result, 72 hours later unbearable six month headache gone (fantastic), unfortunately also a loss of ability to sleep or go to the toilet (No. 2) for four weeks (it’s a funny ha ha subject but I can’t begin to describe the physical pain/agony, frustration or sheer embarrassment of it), this combined with the other side effect of  a massive and uncontrollable increase in appetite created somewhat of a clash in my body, I’ll leave the rest to your imagination. Thankfully with the help of my very good GP Dr Tony Wilman we have eventually gotten the latter problem to a manageable position although it’s still far from perfect. The uncontrollable appetite (and it really is like a drug fuelled crazy demon in your brain telling you to eat, eat, eat) has also meant I’ve piled on tons of weight, none of my bloody clothes fit me any more and it severely pi**es me off! I am fighting all day every day and have been for weeks the urge to eat created by the drugs, desperately trying to lose some weight.

I would like to exercise more but my complete loss of energy due to poor sleep – one hour last night, in a chair, now ask me why I’m tired –  combined with the other joyous side effect of the Steroids – wastage of the major muscle groups – means that mentally I need to drive myself to a level I struggle to attain to even go out and walk the dogs. Added to all of that and a new one on me is Oral Thrush. I had it for a number of weeks and didn’t even realize, it was my Consultant who spotted it. I’ve been on medication for a number of weeks now but had to go back to the Doc this week as it’s simply not working, it leaves your mouth feeling constantly dry and burnt tasting, bonus.

The situation is very slowly getting better, I said I started off on 16mg a day of Dexamethasone at the end of the August, that has now been gradually reduced over the last 3 months to 4mg a day. This was attempted twice before but saw a return of the killer headaches so I had to rapidly go up a dose again. For the last week I’ve been on my third attempt and it seems to be working – no headaches! If they don’t return in the next week, then I may be able to reduce to 2mg a day which will be heaven! I am hopeful then that sleep, appetite and energy levels will all slowly return to a level which is nearer normal.

Update, reduction to 2mg was a failure and upon medical advice I am now on 6mg a day again, frustrating but that’s about as low as my body seems to be able to go without the headaches returning.

I think that’s enough of my rant. In summary, I’m constantly tired, very occasionally I have energy and yes you guessed it I am starting to get frustrated. I am missing work, I’m gutted I’m not going to Afghanistan with my former Squadron, Remembrance Day has really rammed that point home. In general my morale remains good although being stuck at home is starting to send me stir-crazy, getting up to Manchester helped and I am – dependent on medical appointments – going to see my brother and his family for a few days this week. I try not to but I do worry at times about the future, I was originally told in August I had 4-6 months and we are about to hit the 4 month point, although my Consultant seems happy that the situation has improved considerably. It’s still hard not to think that I’m about to enter ‘borrowed time’.

However, remaining positive, I guess another way of looking at it is that I’m about to enter the period where I am proving that I will beat this and every day is a victory. I am content now that I am going to make Christmas, my next target is Spring.

I hate winter at the best of times, this one is going to be a real challenge. God Damn daylight bloody saving!

CT Scans and the Outcome

1430 – Currently drinking crazy juice whilst waiting for CT Scans of brain, chest, abdomen and pelvis.

Was all pretty straightforward in the end, drank juice, got stabbed with more contrast dye and then scanned, results sometime in the next week or so. The purpose of all of this is to allow the Docs to work out how they’re going to get into my chest to do a biopsy of one of the tumours – preferable to going into my head apparently – which will allow them to target the  Chemo correctly. They also want to see if these nasty little tumour things have decided to wander a bit further afield, fingers crossed not!

UPDATE FOLLOWING PHONE CALL FROM MY CONSULTANT YESTERDAY THURS 4 NOV 10

My amazing consultant Dr Geoff Sharpe called to let me know the outcome of the head and body CT scans I had on Monday of this week, needless to say it was initially a wet back of pants moment when I realized it was him on the phone. However it was all positive news, I won’t claim to quote him but my understanding was that my Whole Brain Radiotherapy has had the ‘life saving’ effect they wanted it to, the four tumours (I can only see 3 on the MRI but clearly I’m no expert)  in my head have shrunk by 20-30% and growth has therefore for the moment at least stopped. This was the big emergency they had to tackle and what was putting my life under imminent threat. Happy days, looks like Christmas is definitely on!

I have three sizable tumors in my chest which have continued to in the Consultants words ‘grumble along’ and grown. No surprises there as they have received no treatment YET, however they are next on the agenda. The good news is they are not currently life threatening and it also suits our purposes as they are now more accessible for biopsy. Sometime in the next week my case is going to a Chest Cancer Multi-disciplinary Team meeting where they will decide how they are going to get to one of these things.

So, next steps, chest biopsy to get the 100% diagnosis of what sort of cancer this is, could be a fairly major operation within the next 4 weeks but as the tumors are now easier to get to hopefully not, we’ll see, it’s got to be done either way. Once they’ve got the answer they need they can use the correct Chemotherapy drug to start to deal with them and hopefully reduce/kill them.

Following that at some point in the future I’m guessing two months plus potentially further Radiotherapy on my head and there are various other options now for things like Gamma Knife/Stereo tactic (read targeted rather than Whole Brain i.e. using a fine toothed drill rather than a sledge hammer) Radiotherapy. For the first time it was mentioned yesterday that brain surgery to physically go in there could potentially now be an option in the future. This in itself is a huge positive as originally I was told there were just too many tumors that were too big and it was quite categorically not an option.

Overall BEST news, no new tumours have developed anywhere else in body! What a relief, our first bit of good (medical) news for two months! Kady and I are over the moon.

Tuesday 12 Oct Update After Appointment with Consultant

Okay so I’ve just finished an appointment with the wonderfully reassuring and helpful Dr Sharpe. I am to have a number of CT scans on Monday 1st November to re-assess what is going on with the tumors in my head and chest. Primary aims are:

1. To check the ones in my head are doing nothing really bad and behaving themselves.
2. To assess what change there has been to the tumors in my lungs with a view to getting a biopsy in the coming weeks of one of them. This is very important to get a 100% diagnosis of their cause rather than the 99% we currently sit at. This will then allow us to move on to the next step which is Chemotherapy and for that we must have the correct drug. I guess they also want to see if anything new has cropped up, hopefully not.

All in all a very reassuring visit with the opportunity to chat and ask lots of questions. Also got the chance to pop in and visit my hair removal friends the Radiotherapists, good to say hello and quickly see them.