Peter’s Hospital Diary

Another check up - and 70 days since the transplant!

You may recall the mixed news that I received last week, so it was with a little trepidation that I went for the check-up today. However it turned out to be an interesting day all round, with several things becoming clearer.

The anti-biotics for the folliculitis are doing their job well, and it is now clear that there is a skin rash caused by GvHd, which is a reassuring sign. However during the course of the consultation a new treatment, using the drug thalidomide, was discussed.

Most of you will remember that thalidomide was originally developed in the 1950s to counter morning sickness in the early stages of pregnancy. However it proved to be extremely damaging to the unborn foetus and about 12,000 children with physical deformities were born worldwide, of which about 5,000 are still surviving. Thalidomide use was (not surprisingly) discontinued, but research into the cause of the damage continued, and it as been found to have anti-cancer properties with success in some leukaemias, particularly myelomas. There is some more information here.

Thalidomide isn’t licensed for general use in this country, but it can be prescribed on a ‘named patient’ basis where there may be specific patient benefits; or as part of a trial. Its use is subject to very strict controls, including registration with the manufacturer’s risk management programme, briefings on the risks and dangers to women of child bearing age who may become pregnant, and on other possible side-effects.

So, armed with that information, I dropped off the prescription (which included some topical steroid cream to treat the GvHd rash) at the pharmacy and went off to the bank to get some prescription vouchers! On the way I happened to meet Dr Kazmi, who runs the transplant department, in a corridor. We exchanged the usual pleasantries (Does anyone else find it strange when a doctor asks “How are you?” They probably know better than the patient!) Anyway, to cut a long story short, he noticed the GvHd and wondered if the thalidomide was really necessary as it had only been proposed because at the last check up there was little evidence of the extent of the GvHd. He suggested we met in the haematology outpatients again after I picked up the prescription.

Which I did! We had a long chat about the options, but the summary was that the PET scan is a snapshot and we don’t know in which direction the diease is moving and that two months post transplant was (deliberately) early. So while the GvHd is a good sign, it would be a good idea to let that run to see what happens - if it fizzles out, then I can start the thalidomide. However, I shouldn’t use the creams to treat the GvHd rash yet so we can see how it progresses.

Finally we discussed several other options that can be used to promote or inhibit GvHd. Although the presence of acute (or even a little chronic) GvHd is a major factor in the success of the treatment, management of it is a bit empirical - it mustn’t get out of hand as it can cause liver damage, but it mustn’t be so suppressed that the the Graft v Lymphoma (GvL) effect (which is what we really really want) doesn’t happen.

I suppose all this is really nothing new (apart from the use of thalidomide) - but it was still reassuring.

Meanwhile I have my appointment with the radiotherapist next Wednesday to assess if and how radiotherapy could be performed if needed - it is being prepared as a just-in-case - so if it is needed I am ready to go! My next check up is now in 2 weeks’ time, although I may pop into another clinic at St Thomas’s next Wednesday after the appointment with the radiotherapist.

So all in all, I returned with a bag of drugs that I won’t be using for a while (if at all) but quite heartened by the news. I will also have another PET scan in a couple of weeks to put a ’second point on the graph’ - now that WILL be nail biting, because that will be an indicator of which way the disease is moving…

But - onwards and upwards…

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Well, another year older - but an excellent weekend and a Birthday to remember!

My parents came down on Thursday night - the evening before the day which kicked things off to a good start, but having been out the Saturday before, I wasn’t expecting much more in the way of celebrations. However on Friday we went out “for a drive” and ended up at a lovely Hotel near Sparshalt (details) just outside of Winchester. My sister and brother-in law joined us and we had a very long and enjoyable lunch!

On Saturday I went out with ‘The Boys’ (including Blogmaster Mark) to the pub for a couple of pints for lunch (funny how drinking 3 litres of water in a day is an effort, but a couple of pints at lunchtime is no bother at all… one of life’s great mysteries) and a curry. Yesterday (Mothering Sunday) was spent relaxing after a trip to Church in the morning! (Hope you all remembered to advance the clocks!)

On the health side, I have received the appointment for April 4th to discuss the radiotherapy plan, so that is entered in the diary on the PDA I had for my birthday!

So a big thank you to family, parents and friends for a very memorable week-end!

Today I have been fixing number 2 daughter’s car - which has an irritating tendency not to start when it rains, so we (I!) have changed the plugs and ignition leads, and finally got it going, although I am not convinced the problem is fixed.

I have also fixed a couple of minor errors in the blog - the photos that were in earlier posts have now been re-instated - and leading on from that, I note from the comments that there is some interest in Conservatory progress - so here is a photo of progress so far - note the super thin glazing bars and the super transparent glazing! (The superstructure should be fitted in the week of 10 April - more photos then perhaps!)

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Back in London again today for the weekly check up. Mixed news; the multidisciplinary meeting has had a longer look at the PET scan results, and while there is evidence of a partial response, and the hot spots in my neck and groin have gone, there is concern about the remaining hot spots, particularly the one in front of my spine. The worry is that the lymphoma cells might be multiplying faster than the immune system can destroy them.

The current plan is that localised radiotherapy might help to hold the hot spot in check, and perhaps give the immune system a better chance. There are also some experimental treatments that might be available, although that is a longer term possibility if the radiotherapy fails. I hope I’ll get an appointment to discuss the radiotherapy treatment plan for next Wednesday.

The good news is that my blood is now 100% donor, and it looks as if there is some evidence of GvHd since I stopped the immuno-suppressants. I thought it was just folliculitis - or what I used to refer to as Acne in my teeens! In fact that, coupled with shaving weekly (my hair has started growing back) is just like adolescence!

I was a tad subdued on the way back from London - but I suppose I must remember… Onwards and (hopefully) Upwards!

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I spent yesterday up in London - not a check up this time, but part of a ‘patient advocacy’ team from LeukaemiaCare visiting Portcullis House (the offices of Parliament) to meet with some MPs who have an interest in health issues.

I have mentioned LeukaemiaCare in other posts (and I suppose I should do an “About..” page) stressing the support functions of the charity, but one of its other roles is as a a patient advocate for new treatments of Leukaemias and Lymphomas.

Some background… There are many side effects of chemotherapy, including nausea, hair loss and fatigue caused by anaemia. Nausea is well controlled by anti-emetic drugs, and hair loss can either be lived with as the Yul Brynner/Sinead O’Connor look, or by using a wig, but the effects of fatigue caused by low haemoglobin (Hb) are usually counteracted by blood transfusions, and only when Hb drops below about 8 (normal minimum level is about 12).

The effects of anaemia induced fatigue is insidious, and it is not until you recover that you realise how bad it was. It is more than general listlessness - everything seems to be an effort, and even the thought of doing something trivial seems daunting. Even climbing a flight of stairs can be a major effort.

The standard treatment for severe anaemia is a blood transfusion, and while they work well, blood is expensive and there are risks associated with blood transfusions (although the majority take place without any side effects). Repeated blood transfusions for the treatment of chemotherapy induced anaemia can also lead to iron poisoning (one unit of blood contains about 250g of iron). Iron poisoning can adversely affect the kidneys and other organs.

There is an alternative treatment using an artificial hormone called Erythropoietin (EPO) which is to red blood cells what GCSF is to stem cells - in other words it stimulates the production of red blood cells which counteracts the anaemia. Needless to say it is expensive, but has many advantages such as conserving expensive blood stocks for those procedures where only blood will do, and has the potential to improve the quality of life for many cancer patients, especially those whose cancer is chronic and may need many blood transfusions over a long time.

EPO is available through the NHS for some conditions, but not yet approved for use in treating chemotherapy induced anaemia. It has been referred to the National Institute for Clinical Excellence (NICE) but has not been approved. Yesterday’s meeting was to raise the issue again, and to maintain LeukaemiaCare’s presence as a patients’ advocate organisation.

The wheels of bureaucracy grind slowly (but finely!) and the meeting was really a briefing session, which may lead to an appeal against NICE’s decision and/or a parliamentary question to The Secretary of State for Health about NICE’s remit and the use of EPO. Unfortunately it isn’t a ’sexy’ subject and is unlikely to grab media attention, but the object is to keep on chipping away!

And perhaps one day it will become standard support therapy…

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A busy weekend! Some of you may know that I have a reasonably significant Birthday looming, so we went out last night with some friends for a meal. I was under the impression that we were just going out for a meal, but we actually ended up at “The Watercress Line” (http://www.watercressline.co.uk/) where we dined in a bygone age of steam drawn Pullman cars.. ah the nostalgia! (It’s a boy thing!) A truly excellent evening and a complete surprise!

Other than that, I have been working on a boraston.net website, and I have also edited the page on PET scans, and added a link to a more technical site for a more detailed explanation of the physics behind it.

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Well Thursday has come around and it was a cool morning when I set off for London! On arrival I had the usual blood tests - a bit more than an armful as extra blood was taken for the chimersism tests - the comparison between my DNA an the donor’s DNA to see how the take-over bid is progressing. I won’t get the results of that test for another two weeks.

So after waiting for the initial blood tests to be analyzed, I was ushered in to the consulting room, where Sala (the Senior Registrar) asked me if I had seen the report - and when I answered ‘no’ he replied that he hadn’t either! ##!!@~@!@**@@** However it was being faxed over and sure enough, it arrived about 5 minutes later.

Sala then read them with a complete deadpan face - not a flicker of emotion! I was sitting on the edge of my seat by this time… but eventually…

Anyway - the result is good! The previously active areas in my neck and groin are showing no activity at all, excellent news and partly expected/hoped for as the swelling in my right leg has gone. Bizarrely one of my tonsils shows something, although it seems that there has been something there on every PET scan I have had, so it could be inflammation or low level infection, and there was some activity in my torso in front of my spine, which might or might not be active lymphoma. The report was a preliminary report, so there may be more information later - but overall it is good news (notwithstanding the possible remaining activity)

I went off to the pharmacy to get another load of immuno-suppressants (the MMF) but while I was there I had a phone call asking me to go back to the haemotology department. When I got there, the instructions had changed and I have now stopped the MMF to provoke some GvHd.

So there may be more news next week after my case has been discussed at the multi-disciplinary meeting on Wednesday.

The rest of the blood results from last week were OK - haemoglobin down very slightly, kidney function improved slightly, and no sign of the enzymes that were indicating impaired liver function.

Meanwhile - onwards and upwards! (Oh yes - last night I was elected (unopposed) chairman of the dive club!)

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Not a lot to report today, except that I have written a side page about PET scans. (And it is a lovely sunny afternoon)

However what prompted this post was a look back through the blog archive - I stumbled across the entry for January 31st - the day I came out of isolation! Was it ‘only’ six weeks ago? I went for a trip down to get a paper - and had to lie down afterwards!

I also note that it was just after the weekend when Mark’s ADSL line had problems, and I said that I would move the blog to my servers ‘when I got out’ which I hoped would be at the end of the week. Of course it was delayed by a week and the transfer to my servers didn’t take place for a month after I was released! Just shows how weak I was, and how much progress I have made since then!

Off to Dive Club this evening!

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Yes - it really was the 13th PET scan since this all started back in 1999! Makes it over 2 a year!

Nothing really to report today - it was just the scan, but part of the procedure involved fasting from 6 o’clock this morning. In practice meant from dinner time last night! (I’ll write an ‘About…’ page to cover the PET scan itself). My appointment was for 12 noon, and lasted just over 2 hours, of which 30 minutes is in the scanner, so I was a bit hungry by the time it finished. The healthy ham salad roll, followed by the decidedly unhealthy large iced doughnut was very welcome!

I guess the main diet over the next couple of days might be finger nails while I wait to get the results - no - I am reasonably relaxed about it - honestly! So - until Thursday…

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Hmmm - there is more to being a blogmaster than meets the eye! I came to check the site this morning and found that it wasn’t working - so if you tried to look, you either received a cryptic message about not finding the mysql server, or my hastily put together maintenance page!

Suffice to say that it is now working again, after I installed another little patch - but why it stopped overnight when I had done nothing to the system remains a mystery!

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A special post, nothing to do with health, but just to note that the blog is now up and running on www.boraston.net/blog - and to say a big ‘Thank You’ to Mark J for setting up the original blog back in January - it seems a long time ago!

For those that are interested in a bit of “Geek Speak” the underlying server is an AMD powered PC, running Red Hat Linux version 9. The Web Server is Apache 2, using PHP version 4.2.2. The blog software is Wordpress 2.01, and the database that stores the posts is MySQL version 4.1.18. It was the MySQL database that caused the problems importing the old blog and it needed an upgrade to accomplish that. The limiting factor on speed is the ADSL uplink, which is 256Kb/s.

There is still a bit of tweaking to do behind the scenes, both to the database and to the Apache webserver, but those should be transparent to anyone viewing the blog - but it will keep me occupied during the day!

While I am posting, I can also say that work on the planned conservatory is continuing today - the completion date (apart from the flooring which can’t be done until everything has dried out) is 14th April - just in time for late Spring and the Summer!

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