T+915 No news is good news

Posted by raetsel at Saturday, March 19, 2011

On Wednesday of this week I went to the transplant clinic for my usual check up. My last one was two months ago. I saw the consultant who dealt with me through most of my transplant and whom I hadn't seen for a while so it was nice to catch up with him.

Everything is going fine and my blood results were all in the normal levels. I've been having a few grumbling patches of bad skin on my face, in the creases of my elbows and the backs of my knees. I've tried treating them with the steroid creams I have and it does get rid of them for a while but then they come back. However they don't get really bad and they are not very itchy at all so more recently I've been just leaving them to their own devices in the hope my donor's cells get bored and leave my skin alone.

That said the consultant said low level GVHD was no bad thing as it means it's quite possible that I also have GVL (Graft Versus Lymphoma) meaning the donor cells are also going around killing off any lymphoma cells that might still be lurking in my body. The doctor showed me the results of my latest chimerism blood test. This measures the percentage of donor cells in my blood compared to my own original ones. The most important one is the T-Cell level ( the white cells that fight infections at a cellular level such as viruses and lymphoma cells). My T-Cell chimerism level is over 95% which is a good sign.

The doctor explained I'm now in a basic maintenance routine of blood tests every so often to make sure nothing untoward is happening. He put my next appointment down for three months' time which is the longest I have been between visits to the clinic. Of course if I have any problems then I can call the clinic to get a drop in appointment for the Wednesday clinic or just ring the bone marrow transplant unit at the hospital if it is more urgent and be seen straight away.

So this is pretty much it then. I'm down to my lowest level of tablets and my clinic appointments should only start to get further and further apart. Of course you never know what is round the corner ( which is prolly just as well ) but all being well, or rather me being well, I won't have much to report in this blog and it will be a case of no news being good news.

The primary purpose of this blog was to detail my treatment for MCL and give friends and family an easy way to keep in touch with how I was doing. I have also used it to talk about other things I've done like attend concerts and conferences or my creative writing endeavours as well as pontificating on various topics that have got my goa,t but of late there haven't been so many of those.

One of the reasons for not posting very often to the blog is that after six years with the logistics firm I worked for I have recently taken up a new job at an express parcels carrier in Atherstone. This has been quite an upheaval albeit a mostly pleasant one and I've been incredibly busy at work taking on a whole load of new information and getting used to people and procedures at the new company. When I come home at the end of the day I don't feel like spending an hour or so typing up a blog post when there isn't that much news to report and there are no burning issues I feel I should write about. I've also for some time now being using twitter to post micro-blogs so that lets me let people know what I've been up to on a day to day basis and vent my (under-active) spleen if need be. ( You can see my twitter feed at the top of this blog and also via http://twitter.com/simonstanford . Or follow @simonstanford if you use twitter yourself).

So, whilst I won't be officially closing this blog as there will always be occasional medical updates or anniversaries to post, I won't be posting to it very often. Things may change in the future and I may take to blogging about other topics again if the muse and motivations strike me though I might also choose to start a new blog for that.

In the meantime I would like to thank everyone who has read this blog and especially those who have commented on or responded to what I have written. I hope you have found it interesting, educational and entertaining in various measures.

T + 877 Gee-Pee Bee-Pee

Posted by raetsel at Wednesday, February 09, 2011

When I went to the transplant clinic a few weeks ago I asked the consultant about coming off the amlodipine blood pressure tablets as I had only been put on them because the ciclosporin caused my BP to rise.

I've been off ciclosporin since before Christmas so the consultant said to co-ordinate with my GP to come off the BP tablets. This I have duly done and after a couple of BP checks at the surgery, plus my own daily checks at home for as while, it looks like although my baseline BP has risen a little since coming off amlodipine, I shouldn't need to go back on the tablets.

This means I am now down to my lowest number of different medications and probably the ones I will be on for life:-

  • Penicillin to help with bacterial infections as bone marrow transplant patients often have under-active spleens. (1 x 250mg twice a day )
  • Thyroxine to help with my under-active thyroid gland. (1 x 150mcg once a day )
  • Hydrocortisone to help with my under-active adrenal glands. (20mg Morning, 10mg evening ).

There is a chance I might be able to come off the hydrocortisone tablets but my endocrinologist doesn't seem in a rush to try.

I'm pleased to say that I tolerate these medicines very well, as do most people, as they have few side effects.

T + 854 Happy New Year

Posted by raetsel at Tuesday, January 18, 2011

It seems an age ago but New Year's Day was just under 3 weeks past so a Happy New Year to all my readers.

Before moving on to other things just a quick medical update. I went to the transplant clinic last Wednesday and it is very much steady as she goes. I've tolerated coming off the ciclosporin fine and apart from a couple of patches of dry skin the GVHD seems to be lying low.

The ciclosporin caused my blood pressure to rise when I was first put on it back in September 2008 so I was put on a blood pressure tablet called amlodipine. In theory now I am off the ciclosporin I can come off the amlodipine as the chances are my blood pressure should go back to normal. The consultant I saw suggested I check my blood pressure at home a few times and take these readings in to my GP and get him/her to manage my withdrawal from amlodipine. So I've started drawing up my little spreadsheet of readings and will be off to see my GP next week.

I mentioned a while back that 2011 will be a year of change and it has already got off to a flying start because last Friday I handed in my notice at work as I have got another job to go to. I've been where I am for the last six years but my job is being outsourced to India and the new role my current company suggested I do was not very appealing. It has also been 6 months since the new role was mooted and there has been no sign of a job title or job description.

I've made some good friends where I am now and enjoyed working with lots of people there so I will miss that, but the new role, as well as being something I'll enjoy doing, has better terms and conditions and is about half the travel distance so that will save me time and petrol money.

Looking back over 2010 I started the year thinking I was close to coming off ciclosporin but it turned out to be nearly another 12 months away. I also had a little hiccough with shingles in the middle of the year which whilst not unexpected was still another small setback to deal with. All in all though my health has been pretty good over the last year and that perennial theme of achieving normality looks ever closer to fulfilment . ( Though maybe my trajectory towards it is asymptotic :o).

Highlights of the year just gone would be self-publishing my novel, Reunion to raise over £300 for Cure Leukaemia, and getting the vegetable garden established.

On the subject of writing I have a new short-story up on abctales.com that was written as an assignment for my creative writing course.

It's the poetry section of the creative writing course next. Heaven help us all. :o)