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!
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!
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.
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!
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!
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.
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!!!