What a difference a day makes

It’s been a long while since I’ve posted. But so much has happened since the 10 May! So this is a fairly long post…

First off, after my all clear scan 5 weeks ago there was nothing much going on and I’d made the decision not to blog unless I actually had something interesting to say. The only thing notable was the day after I saw my consultant for the all clear I began to have a strange feeling in my pectoral/shoulder muscles – a bit like I’d been doing press-ups. Nothing major but I knew I hadn’t been doing anything strenuous so thought it was strange. Then I woke up a few days later with a sore throat. I’d been out to a 40th birthday party the night before and just thought it was from talking loads and shouting over the music. Next my energy levels plummeted. I was back to having sleeps in the day. My son was here visiting so it was a real challenge to get up and do stuff with him and keep Ben occupied. I managed by swallowing Paracetamol and doing stuff in bursts, then going and resting.

By the end of that week I knew something was up so I phoned my specialist nurse at the hospital. Having spoken to the docs, she said to come in and have my Apheresis line checked (that’s the pipe sticking out of my chest), as they suspected I might have an infection in it. So there I was on a Friday evening, back at my favorite haunt (not!). Unbelievable. Anyway the docs checked me over, took some blood, had a chest x-ray and was sent home, suggesting perhaps a virus. Over the weekend came the odd fever, more lethargy and just feeling generally rubbish. I was now taking the max dose of Paracetamol and the occasional Ibuprofen just to get through the day. On the Monday I had to take my son Ben to Manchester Airport, and it was a case of rest, rest, rest, dose up on tablets and drive. I don’t know how I managed it but I got him on the plane but it pretty much wiped me out for the next 24 hours, temperatures now going into the 38s and 39s regularly. By Wednesday I knew that I’d be doing some time in hospital. Still unsure really of what was going on. Could this be late side effects of ESHAP? Could it be a virus? Maybe my central line is infected after all?

Anyway I packed a bag and went off to St James. I was admitted with what they first thought was a chest infection (despite the x-ray coming back clear). Then it was definitely a central line infection. So the line was pumped full of strong antibiotics and sealed off, I had a cannula stuck in my arm. I was also put on a cocktail of strong antibiotics. Over the next 12 days I did time on 3 different wards, eventually ending up on the haematology ward in my own private room, which was much better as I could finally get a bit of peace and quiet now and then.

My condition wasn’t improving, and if anything it was getting worse. The docs said that the antibiotics were not succeeding in beating the infection …if indeed it was an infection. Along with all the antibiotics that I was having pumped into me were litres and litres of fluid and unfortunately my kidneys could not cope with getting rid of all this excess water. So I’d now blown up like a balloon and had gained over 10kgs! My ankles were really swollen and I had a proper spare tyre around my waist (not a good look for a slim guy!). Anyway I came really close to them whipping me off to theatre to have my line removed. However the consultant got wind of this (thankfully in hindsight!) and said no, he didn’t think this was the cause of it all. Great. What now?

By this stage the medical team were coming round to the idea that something else might be going on – as crazy as that was, only having just been given the all clear – and I was booked in for another PET scan. But how it works is the docs can’t give you anything to alleviate the discomfort until they have done the scan, as this can muddle the results. So I had to endure a couple more days of awful fevers, counting down the hours until I could get my next hit of Paracetamol. If I wasn’t able to have my next dose (you can have 1000mg every 6 hours and max 4 doses per 24 hours) I would feel the fevers coming on – it would start with a chill, with shivers down my back. Wrapping up in a hoodie with a couple of blankets would help a bit, but still not prevent the inevitable shivering (called rigors). Stage 2 would be overheating. I’d kick off all the covers and remove recently added clothing and put the fan on maximum revs (dunno how I would have got through without the fan! I’m a big fan of Dyson now, haha!). As soon as I took the Paracetamol, after about an hour my temperature would begin to come back down and I would start to feel okay. But it was not fun. And if food arrived at the wrong time in my ‘cycle’ I just could not eat.

Eventually I got to have the scan (Saturday morning – who says we dont have a 7 day NHS?). As soon as I got back to my room I was prescribed and given a pretty heavy dose of Prednisolone, which is an absolutely amazing corticosteroid. It ended the cycle of fevers within hours. And since then they haven’t returned. Additionally I was told my blood test results had shown that I was low on haemoglobin and platelets so I was given 2 bags of blood. Over the last year I have seen people having blood transfusions and to be honest I was hoping I’d never have to do it myself. I can handle most things a hospital can throw at me but the thought of having blood stuck in my veins had kinda freaked me out. But at that stage I was so poorly that I didn’t really care, and now that I’ve had it I know first hand how it can make you feel WAY better in a matter of an hour or two (I get the whole vampire thing now!).

By Monday I was much better and was discharged. I went back to a clinic appointment on the Tuesday to get the results. Sure enough, the lymphoma was back. My fight with this disease seems to be a bit like the Whack-A-Mole game at the fun fair – I have treatment, it clears the lymphoma from the affected nodes, the treatment ends and it pops up in another part of my body. This time its nodes in my chest, armpits, abdomen & spleen (apparently your spleen is like a big gland and it also plays a role in regulating red & white blood cells and platelets – hence the transfusion. You can do without a spleen and other parts of your body take over its jobs but is not ideal and you’re more susceptible to infection. Not that they’re planning to remove my spleen, I’m just saying!).

So I am now on 3rd line treatment. Its called Brentuximab and is a new type of treatment called immunotherapy, also known as monoclonal antibodies. This stuff is at the forefront of cancer research and has shown very promising results with many different cancers. There are various different types of immunotherapy but the basic idea is that the molecules attach themselves to the cancer cells and awake your own bodies immune system into recognising them and attacking them (this is the thing about cancers so I understand – your body doesn’t recognise that there are foreign/mutated cells roaming around and therefore they can hide from your body’s immune system). I’ll post more on Brentuximab soon but the reality is I don’t know that much about the stuff and the info I have had from the hospital has been rather vague compared to previous treatment regimens. Even looking around Online there doesn’t seem to be that much info out there. So if anybody is reading this and knows a lot about Brentuximab then please drop me an email!

The Brentuximab course is a half hour infusion once every 3 weeks – a walk in the park compared to ESHAP (and ABVD). And the side effects are supposedly nothing like chemotherapy. I’m due to have 4 infusions in total with a scan after No. 3. So far I have had one dose, and it wasn’t totally without side effects. It knocked me out with EXTREME lethargy for 5 days. I could hardly get out of bed or do anything – felt like the earths gravity had suddenly doubled. Besides this I had nausea and flu-like aches in various parts of my body from time to time. Slowly these have subsided …and I’ve got to say I’ve been feeling pretty damn good for the past week. Every day my energy levels are a bit better. I haven’t had any fevers. I’ve put on some weight. And no funny aches and pains. So I guess (I won’t know until I have another scan after Brentuximab 3) it may just be working!

Failure is not an option!!! 🙂

PS – I’ve entitled this post “What a difference a day makes” as there is an ad on the TV currently playing a lot over the past couple of weeks with a backtrack by Dinah Washington that I thought was really apt! Have a listen:

 

5 Comments

Emma Nabarro-Steel

So good to read this, but what a(nother) rollercoaster you’ve been on since we last saw you? We’re always thinking of you Clive. A great post and a fab song too! Xx

Reply
Lisa mcloughlin

Great to hear in detail how you are getting on. Mum said you looked a lot better yesterday. Enjoy feeling well in between treatments and let’s hope we can get together again soon. Sending much love. You’re doing amazing!

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Nic Adcock

Clive, when I saw you at the welly wanging today it was heartwarming… that lovely smile of yours beaming out! What an amazing blog which will help so many going through the same/ similar experience. Look forward to seeing you again soon x

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Mahesh

Thank you for your posts. Can you share what type of lymphoma you are diagnosed with? I’ve recently been diagnosis CD30+ tcell ALCL. I’m debating if should sign up for a brentuximab clinical trial to get it as first line treatment with CHOP. You seem very please with brentuximab. Thank you

Reply
Clive

Hi Mahesh and sorry for the delay in replying. I have classical mixed cellularity HL. Personally Brentuximab has done wonders – it has got me into a good remission and the side effects are bearable. I understand it doesn’t work as effectively for everybody but I don’t think you have much to lose by going on the trial. All the best for the future!

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