A minor complication

Posted by raetsel at Thursday, February 28, 2008

About 4 weeks ago I started to have a few heart palpitations where it felt like I had a run of three or four heart beats in rapid succession. It's quite a hard feeling to explain but you'll know if you ever have one. I started getting these about three or four times an hour. It didn't have any other effects, no rapid heartbeat in general, no breathlessness, blood pressure normal. Both my Mom and Dad suffer from Atrial Fibrillation so I know a little bit about what to look for.

I mentioned this to my consultant on my visit before last ( 5th February ) and she said she wanted to get it checked out to make sure there was not some underlying heart problem that might affect what Chemotherapy I can have. That day I had an ECG and a chest x-ray. These have subsequently come back fine but as the palpitations do not occur regularly it's pretty lucky to catch one on an ECG.

Between then and my last visit ( 26th February ) I had a nasty bout of flu but the palpitations settled down to a point where I couldn't say for sure if I'd had one at all in a day. Then they came back again last Saturday almost as bad as before ( and I've got as filthy cold now - coincidence probably ). Now I am settling back again.

To get to the bottom of this I'm going in to hospital on Monday 3rd March, ostensibly to have a Central Venous Catheter (CVC), or Central Line fitted, but whilst I am there I will also have an echocardiogram ( an ultrasound of the heart) and a 24 hour heart monitor fitted to try to catch a palpitation and find out what it is. I'll be in for two or three days.

It's been a bit of a blow to have this added complication at this stage in the proceedings and to be honest it has shaken me a bit, but there are lots of causes of this sort of thing and most are fairly minor so I hope this won't affect how my treatment for the MCL proceeds.

The story so far....

Posted by raetsel at Thursday, February 28, 2008

I'd had this lump by the side of my ear for 12 months or more but just thought it was one of those sebacious cysts people get now and then. I'd had a small one in my neck years ago that the GP had said was just such a cyst and as this one was soft, round edged and mobile I assumed it was another one. In January 2007 I went to the doc's with sinus trouble that I get from time to time and need antibiotics to shift. While the doc was examining me she noticed the lump by my ear and decided to get it checked out and referred me to the hospital.

In the time between that referral and my first appointment ( three months away ) the glands in my neck came up as I was having a bit of a winter cold. Well the one gland never went down again. After being poked with various needles etc. the hospital decided the only way to work out what these lumps were was to whip one of them out. So I was in as a day case to have the one in my neck removed under a general anaesthetic.

I got the results of the biopsy on the 30th May 2007. It was a bit of a shock to say the least. The tests confirmed it was a lymphoma ( a cancer of the lymphatic system / white blood cells ) and the type I had was a sub-type of Non-Hodgkin Lymphoma called Mantle Cell Lymphoma. It's actually pretty rare and there are only about 400 new cases a year in the UK out of over 200,000 cases of cancer a year over all. I've probably had it for several years before I could feel the lump in my neck. Due to the way it develops I'm actually quite young to have been diagnosed. People are normally over 65 before it is discovered ( and that makes treatment options for them more limited ). At 39 it's nice to be thought of as young in some spheres anyway.

After starting out with one haematology consultant I've been switched to the Queen Elizabeth hospital which has a specialist cancer centre and specialist haematology. I've been going there since June 2007 and have had some CT scans and x-rays to check the progress of the disease. We have also discussed the various treatment options and come up with a plan.

The plan is that because I am young (!) and generally fit (!) I can withstand more aggressive and ultimately more successful treatment. This will take the form of a treatment regime called R-HyperCVAD which just comes from the names of the various drugs they use in the chemotherapy. This is a tough regime that will kill pretty much all my white blood cells and platelets and the stem cells in my bone marrow that make new blood cells. At this point my body should be free of the disease but needs to be helped to recreate new blood cells. For this I am going to have a stem-cell infusion from a donor. They tried my brother be he was not a match ( siblings have only a 25% chance of a match). So instead they checked the international panels for an unrelated donor. In the UK this is done through the Anthony Nolan Trust but they co-ordinate worldwide. As it happens I have a donor in the UK and he is a perfect 10 / 10 match for my tissue type so he is as good as a match from my brother.

The plan is to start the treatment by the end of March this year. This will mean going in to hospital for a week of Chemo then being at home recovering for three or four weeks then another round of Chemo then another recovery session and then going in to hospital for the final big dose and having the stem-cell infusion from my anonymous donor. ( The stem-cells are collected from the donor and given to me like a blood transfusion).

This final session is “the big one” and I'll be in hospital for four to six weeks for that and then at home for up to six to nine months recovery. The biggest risks are related to infection when my immune system is destroyed by the chemo and the donor cells are still waiting to get established. Hence the long stay in hospital, part of which will be in semi-isolation. Not quite a plastic bubble but visitors have to wear aprons, no physical contact etc.

Update 9th December 2008

To help bring new people up to speed here are the potted highlights of my treatment since March this year.

Things went pretty much according to plan. I had a central hickman line fitted on the 25th March and started the first round of chemotherapy on the 27th . I was in hospital for a week and tolerated the drugs extremely well with almost no noticeable side effects apart from some tiredness. Unfortunately I got an infection in my line and had to have it removed on the 20th April, so it didn't last long.

My white cell counts fell and recovered as expected and I was ready for my second round of chemo on the 1st May. To facilitate this I had a PICC line fitted as there was not an available surgery slot to get me another hickman line. This second round of chemo used different drugs and I did have a nasty bout of nausea caused by one of them but some anti-sickness injections sorted this out. I also started to lose my hair. I was in for just under week for this second round of chemo.

Over the next couple of months I did a repeat of the first and second rounds of chemo which I was able to have through a new Hickman line that was fitted on 29th May which lasted until the end of my stem cell transplant in September. I had a couple of minor bacterial infections that needed to be treated with antibiotics and I had a couple of blood transfusions when my red blood cells were low.

I completed my four rounds of chemotherapy on the 5th July. Throughout this period (March to July), when I was not in hospital I was able to work from home apart from the odd day when I was suffering from fatigue caused by the chemo.

I had a CT scan on the 24th July and that showed I had had a complete response to the treatment and was in remission. I returned to working in the office for a couple of weeks in August before going in to hospital for my stem cell (bone marrow) transplant on the 8th September.

I received the stem cells from my anonymous donor on the 16th September. In total I was in hospital for four weeks for the pre and post treatment with the stem cells. This was a tough time with nausea, reactions to some drugs, a couple of bacterial infections and a nasty bout of diarrhoea.

I came home on the 6th October on a large drug regime aimed at stopping the donor immune system attacking my body ( something called Graft Versus Host Disease ) and protecting me while my immune system is surpressed.

Since then my recovery has been going well and all I've really had to have done is a couple of blood transfusions.

Now read on..............

Here we go, here we go, here go.....

Posted by raetsel at Wednesday, February 27, 2008

Welcome to the inaugural post to this blog about my treatment for Mantle Cell Lymphoma (MCL).

The two main purposes of this blog are:-

  1. To provide a place for friends, family and colleagues to find out how I am doing if they want to , without having to be spammed with updates by email from me.
  2. To act as a journal for me to look back on during my recovery. Various leaflets about cancer treatment suggest this is a good idea.

Although I don't expect many people I don't know in some way or other to look at this blog it's possible some people who are having to deal with cancer , maybe even MCL, may come across this blog.

So a secondary purpose is to provide a source of information about what my treatment is like and how it affects me in the hope that this might help other people cope with MCL in particular and chemotherapy in general. People who don't know me can find out a bit more about me by clicking on my profile on the left and can read the story so far by reading this post.

Oh and yes I am aware that the title of this blog might be more grammatically correct as "MCL and I" but that doesn't have the alliteration. :o)