Crunch time (Part 27)


Happy New Year to everyone and thank you for all your lovely comments.

After a wonderful Christmas and New Year it's sadly back to business and in the next couple of weeks we should know how effective the photopheresis at Rotherham has been in treating the chronic Graft versus Host Disease (cGvHD).

The steroid taper is rapidly approaching crunch time. If the treatment hasn't been successful the unpleasant problems associated with cGvHD will reappear.

These could include:

â—? Incredibly dry skin
â—? Impaired joint mobility
â—? Unbearable itchiness

The bad news is that some of these symptoms, albeit in a very mild form, have started to emerge already.

I'm convinced that cGvHD is something I will have to live with for the rest of my life.

The question is just how debilitating it will be.

The sad thing about reducing the steroid dose is that I'm no longer bristling with energy but I have still got an oversized head.

The side effects do reverse once you're off the drugs but why couldn't I keep the va va voom and ditch the pumpkin with a neck? My future father in law remarked over Christmas that I resembled a hamster! And he's not wrong. It's like having two golf balls shoved up in my cheeks.

It is also worth being aware of the irony that although the cGvHD could go onto ruin my life, it's probably saved my life by fighting off any remaining leukaemia.

I wanted to write an update about where I am at with the 'sted' reduction.

This graph shows how the steroid taper is working. To begin with the dose was dropped by about 10mg a week. Now I'm down to 25mg a day and the next reduction will be in steps of 5mg.


However, not only do I need to be weaned of those drugs but also the other immunosuppressant I take which is called ciclosporin.

In an ideal world I will be able to come off the steroids then begin a taper for the ciclosporin.

Once I'm off both drugs - and no longer have any cGvHD because it's been cured by the photopheresis - my new immune system will be able to function and I will be able to return to my normal life.

Unfortunately I just don't believe that's going to happen.

I've now met people like me whose lives involve a never ending cycle of cGvHD flaring up, which is brought under control with a high dose of steroids, which in turn brings with it the high infection risk - and the huge face.

Over Christmas I was fortunate enough to avoid any major infections but I still feel under the weather and there are a few problems with my chest.

The doctors say it sounds clear and I'm taking both antibiotics and antivirals so I should be OK but I'm struggling with my energy levels.

It's really hard to know if this is due to an infection, whether it's my body just recovering from the pre-Christmas infection or if it's the chemical come down associated with coming off the steds.

It is also terrifying reading about all these bugs, like norovirus, doing the rounds. I'm really grateful that I can stay in my flat and work on the Examiner's website from home.

Do you remember a comedy on BBC2 called Game On? I feel like the dude with the surfboard. Never mind!

I have no idea what 2008 holds but with a wedding to organise for August there is certainly plenty to keep me distracted.


You're an inspiration. I'm always anxious to see your next posting to make sure you're doing OK. Congrats on the engagement and I wish you a wonderful 2008.

Hi Adrian!
I've been reading your blog since last April when a close relative of mine was undergoing treatment for AML. I can't remember how I found you online but I'm glad I did! Your blog is brilliant.

Congratulations to you and Poppy. I wish you all the very best for 2008, and yes I do remember that bloke from Game On :D

Catherine x

Hi Adrian

Great to here from you again. It`s a bit scary for you about the cGVHD but remember it`s probably saved your life and this is the deal you`ve been given so go for it! Try not to dwell on other peoples` leukaemia experiences -everyone is different & has varying levels of success.

I often think of you and realise it`s not all fun & games but you`ve got exactly the right attitude.Plus the support of your girl & your family.

Crewe Alex actually won on New Years Day!What about Forest? Does Beckham deserve 100th cap?
All these mind blowing questions!

Take Care as always & hope results are good.

Lots of love

Hi Adrian, Great to hear from you again. I check the blog every couple of days to see if you've posted and see how you are. A big congrats for your engagement and cheers to a fab August wedding. I really hope all goes well coming off the steds and the cGVHD doesn't reappear. Cheers, Stef

Adrian, you really are an awesome fellow and your blog is no doubt helping thousands (maybe millions!) of people. I know it has helped me immeasurably while I sat beside my brother while he went through acute myeloid leukaemia (I was his donor too). Your sense of humour, and honest factual accounts of symptoms, emotions and medications have helped me to better understand what my brother went through. He's a man of few words, you see!

I think the best thing about living in today's world is that the medical research being conducted is going forward in leaps and bounds, so as long as you fight the good fight, tomorrow could be the day they find a better way to medicate something, or a cure for something else, or a way of preventing something else.

Keep on keeping on Adrian! You are an inspiration to many.

Amanda (Australia)

Hi Poppy and Addy.
Congratulations on your engagement!!! Hannah just managed to drop this into the conversation at the weekend. She swears she mentioned it Christmas Eve, after Poppy sent her a text! But as you know, you dont angue with Hannah! So a belated congrats to you both. wishing you blue skies and a wonderful day in August. Lots of love, Lesley (Hannahs Mum)

Adrian, this is my first experience with a blog and my first comment to you however I have been following your site for a couple of months now. I keep up my husbands "caringbridge" site which helps our family and friends keep up with how he is doing. He has ALL +PHl(Philadelphia Chromosome). Diagnosed June 06. I think your blog has been awesome, especially when it comes to educating people. I want to wish you the VERY BEST. You are an inspiration to so many.

If I was in game on, I woulda been that nurse - bejazus!


Photophresis works wonders! YES, I had and went through most all that you have and photophresis allowed me to be off steroids, Methol pred...

I had an Allo transplant 11 years ago. Started Photophresis three years ago. Today was my last time! No more GVHD.

BBC Worldservice - Health Check - Claudia Hammond:
Heard your story this morning at 4:55 am GMT+5 on PRI 970 AM. USA, New York State - near Niagara Falls.

Watch for steroid problems. Keep my email. I have hard drives filled with medical outcome/ treatment review articles - they were really useful to me in making decisions.

On German BMT - I found very useful info and data from German studies and reports. My doctors wanted to perform a surgery, and, only the German doctors had kept track of results - which were not good. I declined the surgery and relayed the data to my doctors. Did not mention the surgery because I do not want to alarm you - keep watchfully positive.
Best wishes,
Steven Kemp

Hi,Aidy, just to say how impressed we all were with your interviews yesterday, well done, your parents must be very proud of you. I'm not sure how you are about christianity, but as soon as Mark told us last week that things were not looking good I got all of our church in Glossop to pray for you. At that point all they knew about you was that you were Mark Leighton's friend now having seen you on TV they all feel they know you. I got lots of phone calls yesterday from people saying they were amazed by your attitude and your concern for others. Love Sue Leighton (Mark's Mum)

About this Entry

This page contains a single entry by Adrian Sudbury published on January 9, 2008 2:45 PM.

Merry Christmas to everyone! was the previous entry in this blog.

A tribute to Donna is the next entry in this blog.

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