If you have been tracking my progress since I started this blog back in Jan 2016, you will know that I usually look on the bright side of life. Nothing has changed. The recent setback has been resolved and the lumps have disappeared (who knows, maybe forever).
I had radiotherapy on the lump on my arm in February. For two weeks afterwards, the lump had swollen up substantially and I thought it would never go away. But after two weeks it suddenly started to subside and within a further week had disappeared completely. I was a little surprised at how tired radiotherapy made me feel (and, to be honest, still does). But overall it worked really, really well.
At the end of Feb I had my scheduled MMR jab (part of my treatment programme) and I know that also prompted an immune system response as I started to feel even more tired. I spent the month of March in a haze but could feel, almost on a daily basis, the lumps above and below my eye getting smaller. I was feeling tired because my immune system was in overdrive - generating MMR antibodies, and clearing out the remaining lumps of lymphoma. Then at the end of March, I had a second MMR shot. And that, ladies and gentlemen, was the last scheduled treatment I have related to my transplant (well, except for a blood test in two months time to ensure I have indeed generated MMR antibodies).
I have no more perceptible lumps. All gone.
I have no more scheduled treatment.
I'm done :-)
I still have to go back to the hospital for checkups every couple of months. And the doctors tell me to expect to feel tiredness for another while (another couple of months or so), as my body recovers from the recent treatment.
The biggest event of all since the transplant has also occurred this month - I have just made contact with my donor. It's in the very early stages of email exchanges at the moment, but I am very excited at the prospect of meeting the man who saved my life.
Wednesday, 18 April 2018
Tuesday, 6 February 2018
Happy 2nd birthday - new immune system!
On Sunday, Feb 4th, I shared a chocolate cake with my family. We celebrated two years since my life-saving transplant. I find it hard to believe that, given all the treatment and relapses I went through over the past six years, I have come out the other side with a pretty good bill of health. I say that guardedly, because there is still one more hurdle to overcome - more on that in a bit.
I have gone from strength to strength over the past year. It has now come to the point that I am almost back up to full swing and have no transplant-related issues to worry about. I am back at work full time (and have been since this time last year) and the only thing that hits me occasionally is fatigue - usually after an intense day at work or a long week in the office. I sometimes feel at 4pm like I used to at midnight - tired, worn out and ready for bed. Maybe that's just old age kicking in!
So, life is good. However, my old friend the "mixed chimerism" has come to bite me. I wondered about this before - how can my old, potentially cancerous, lymphocytes (13%) live beside my new, healthy, lymphocytes (87%) without causing problems. Well, as it turns out, they can't! Back in August, I noticed three new lumps - in my upper arm, below my right eye and above my right eye. I can even remember the day I first noticed them - Tuesday August 1st. I'm pretty sure they were not there the day before. The lump on my arm was big enough to alarm me, so I raised it with the docs. Fast forward through a CT scan, ultrasound, biopsy and PET Scan - the lump is lymphoma. The good news is that nothing else showed up in my scans - it's just that lump (and probably the smaller lumps near my eye) that are cancerous.
I agreed today with the doctors that I will have radiotherapy on the lump on my arm. This will serve two purposes - one is to zap and get rid of that lump; the second is to prompt an immune system response that will tackle any other old lymphocytes that are lurking elsewhere in my body (such as my eye).
There you have it - back to the treatment table for me - but I am not at all concerned. I have no doubt I'll get through this too - although I am curious about the treatment as I haven't had radiotherapy before. I will also get a new permanent reminder of this - a small tattoo (just a dot) that is used to target the beam. There may be a chance of fatigue, but more than likely I'll not experience any side effects.
It definitely feels like this is my old immune system trying one last trick before it disappears forever. Once it is zapped, surely that'll be it. I'll have to figure out other creative ways of getting out of the household chores.......
I have gone from strength to strength over the past year. It has now come to the point that I am almost back up to full swing and have no transplant-related issues to worry about. I am back at work full time (and have been since this time last year) and the only thing that hits me occasionally is fatigue - usually after an intense day at work or a long week in the office. I sometimes feel at 4pm like I used to at midnight - tired, worn out and ready for bed. Maybe that's just old age kicking in!
So, life is good. However, my old friend the "mixed chimerism" has come to bite me. I wondered about this before - how can my old, potentially cancerous, lymphocytes (13%) live beside my new, healthy, lymphocytes (87%) without causing problems. Well, as it turns out, they can't! Back in August, I noticed three new lumps - in my upper arm, below my right eye and above my right eye. I can even remember the day I first noticed them - Tuesday August 1st. I'm pretty sure they were not there the day before. The lump on my arm was big enough to alarm me, so I raised it with the docs. Fast forward through a CT scan, ultrasound, biopsy and PET Scan - the lump is lymphoma. The good news is that nothing else showed up in my scans - it's just that lump (and probably the smaller lumps near my eye) that are cancerous.
I agreed today with the doctors that I will have radiotherapy on the lump on my arm. This will serve two purposes - one is to zap and get rid of that lump; the second is to prompt an immune system response that will tackle any other old lymphocytes that are lurking elsewhere in my body (such as my eye).
There you have it - back to the treatment table for me - but I am not at all concerned. I have no doubt I'll get through this too - although I am curious about the treatment as I haven't had radiotherapy before. I will also get a new permanent reminder of this - a small tattoo (just a dot) that is used to target the beam. There may be a chance of fatigue, but more than likely I'll not experience any side effects.
It definitely feels like this is my old immune system trying one last trick before it disappears forever. Once it is zapped, surely that'll be it. I'll have to figure out other creative ways of getting out of the household chores.......
Saturday, 23 September 2017
Checking In - still going well
It's been three months since my last post and there really isn't much to report. All is going really well, although I had a little scare last month when I found a lump on my arm. This is still being checked out (am awaiting an ultrasound), but the suspicion is it's a lipid or some other kind of fibrous growth, as there are no main lymph nodes where I have the lump (on my bicep).
The lump did prompt a CT scan and this came back completely clear. One thing that was noted was that my spleen is slightly enlarged - but we knew that already and we doubt it'll ever go back to normal after the stretching it got in 2015 when I last relapsed. A larger spleen is the new normal for me.
My journey to handling full-on pressure and workload at work continues and I think I have reached the level of output and productivity that I had before this all started six years ago. I still ensure (as in my previous post) that I am in control of my hours worked and stress levels as I never want to go back to the stressful days of old. Make time for all of life (and enjoy it) is my motto!
Another observation - my hair has very little grey these days. I am convinced (as is my hairdresser) that it is getting darker all the time (and I promise I'm not dying it!). Great while it lasts, but I am expecting my hair follicles to give in suddenly one day and I will wake up with a completely grey head of hair! Either that, or my name is Dorian Gray and there is a picture of me in the attic that is getting older while I am getting younger - I'll have a look and will report back :-)
The lump did prompt a CT scan and this came back completely clear. One thing that was noted was that my spleen is slightly enlarged - but we knew that already and we doubt it'll ever go back to normal after the stretching it got in 2015 when I last relapsed. A larger spleen is the new normal for me.
My journey to handling full-on pressure and workload at work continues and I think I have reached the level of output and productivity that I had before this all started six years ago. I still ensure (as in my previous post) that I am in control of my hours worked and stress levels as I never want to go back to the stressful days of old. Make time for all of life (and enjoy it) is my motto!
Another observation - my hair has very little grey these days. I am convinced (as is my hairdresser) that it is getting darker all the time (and I promise I'm not dying it!). Great while it lasts, but I am expecting my hair follicles to give in suddenly one day and I will wake up with a completely grey head of hair! Either that, or my name is Dorian Gray and there is a picture of me in the attic that is getting older while I am getting younger - I'll have a look and will report back :-)
Wednesday, 28 June 2017
Lymphoma: A lesson in life
I'm not blogging as much these days as I march towards full health, and the transplant moves further away in my rear view mirror. However, my hospital appointments are now proving to be a good time to reflect on my progress and how I live my life differently as a result of five years of fighting lymphoma.
I had another visit to the hospital today. While I was waiting for my turn, I thought about what I've been through since November 2011 and how I lived my life before diagnosis compared to how I am living it now. As there wasn't a lot from a treatment point of view to discuss with the doctor, I continued my musings with him - he was very interested in how I am coping mentally as it is a very important part of the recovery process.
Before lymphoma, I allowed myself to get far too absorbed into work. It frequently took over my life, leaving little spare time for the other important things in my life. I now also realise that I probably drank too much, even though I didn't consider this to be a problem, but my socialising and relaxation was primarily based around alcohol. My free time outside work was often spent worrying about work and didn't allow me to completely enjoy the moments, weekends and holidays that I had with my friends and family.
I now realise that I can work very hard and still be successful, but leave it aside when I am done for the day. My productivity has not reduced as a result of this mindset change - in fact, I think it has improved as I approach my days with great clarity after having a good night's rest and not working late the previous evenings. It's not all that black and white, as some days office things dwell on my mind, but I am managing to stick to this mindset as a rule.
My free time is very important to me and I try to make sure I live in the moment - enjoying the experience of being with my family, or friends, or exercising, or whatever I'm doing at the time.
As a result, I feel a lot happier with my life at the moment and I also enjoy everything a lot more. It has taken lymphoma to teach me that and if the disease is all behind me now, then maybe it was worthwhile.
I had another visit to the hospital today. While I was waiting for my turn, I thought about what I've been through since November 2011 and how I lived my life before diagnosis compared to how I am living it now. As there wasn't a lot from a treatment point of view to discuss with the doctor, I continued my musings with him - he was very interested in how I am coping mentally as it is a very important part of the recovery process.
Before lymphoma, I allowed myself to get far too absorbed into work. It frequently took over my life, leaving little spare time for the other important things in my life. I now also realise that I probably drank too much, even though I didn't consider this to be a problem, but my socialising and relaxation was primarily based around alcohol. My free time outside work was often spent worrying about work and didn't allow me to completely enjoy the moments, weekends and holidays that I had with my friends and family.
I now realise that I can work very hard and still be successful, but leave it aside when I am done for the day. My productivity has not reduced as a result of this mindset change - in fact, I think it has improved as I approach my days with great clarity after having a good night's rest and not working late the previous evenings. It's not all that black and white, as some days office things dwell on my mind, but I am managing to stick to this mindset as a rule.
My free time is very important to me and I try to make sure I live in the moment - enjoying the experience of being with my family, or friends, or exercising, or whatever I'm doing at the time.
As a result, I feel a lot happier with my life at the moment and I also enjoy everything a lot more. It has taken lymphoma to teach me that and if the disease is all behind me now, then maybe it was worthwhile.
Wednesday, 26 April 2017
Recovery continuing nicely
Another hospital visit, another step towards normality. The main thing I'm watching these days is my lymphocyte count. The expectation is that this will return to normal levels a year to a year and a half after the transplant. Well, I'm in that timeframe now and, right on cue, my Lymphocyte levels have risen to the low end of normal. I'm hugely encouraged by this, as for a while I thought it would never budge from its low levels. Definitely another big step in the right direction.
Now to watch the chimerism. As I produce more lymphocytes, I want to see the ratio of new ones to old get to the point that my old lymphocytes are undetectable. This will finally mean that the old lymphocytes, which mutated and became cancerous, are gone - and hopefully the Lymphoma gone with them.
I'm feeling really good these days. Cocky enough to increase my responsibilities at work too. Although I still need to take it slowly and carefully, as I still hit the fatigue wall if I push myself too hard - often by 3pm if I've been busy all day at work (I start these days at 7am).
Still a long way to go, but I'm slowly beginning to come round to the idea that this transplant might just have done the trick......
Now to watch the chimerism. As I produce more lymphocytes, I want to see the ratio of new ones to old get to the point that my old lymphocytes are undetectable. This will finally mean that the old lymphocytes, which mutated and became cancerous, are gone - and hopefully the Lymphoma gone with them.
I'm feeling really good these days. Cocky enough to increase my responsibilities at work too. Although I still need to take it slowly and carefully, as I still hit the fatigue wall if I push myself too hard - often by 3pm if I've been busy all day at work (I start these days at 7am).
Still a long way to go, but I'm slowly beginning to come round to the idea that this transplant might just have done the trick......
Wednesday, 15 March 2017
13 months on and I've still got a big one
I've reduced my blogging frequency these days, because there isn't a lot to say other than my recovery is progressing nicely, and as expected.
First of all, the big news - my latest scan is completely clear. I am thrilled with this. The only thing to note is my spleen is still enlarged slightly - but we still think this is its new size because of the amount it was stretched previously. You all have my permission to say "there goes Trev - he's got a big spleen, you know". Plus - you know what they say about big spleens :-)
My Lymphocyte chimerism (ratio of my old Lymphocytes Vs new donor ones) is 87% donor / 13% old. This is good, and slowly moving in the right direction. The old Lymphocytes are where I had the cancer, so I definitely want them gone.
My Lymphocyte count has increased to 0.9. This is still very low, but it has increased from 0.7 last time - so it also moving in the right direction. My antibodies are low too. While these are low, I continue to be at increased risk of catching viruses and not being able to get rid of them without medical intervention. Case in point - I have been suffering from a cold for the past 5 weeks. From week to week it varies in strength - it gets worse to the point where I'm sneezing and coughing with a fever and then suddenly it wanes and becomes hardly noticeable (as it is right now).
So, it's all positive at the moment. Life is good. Work keeps me busy full time now, plus we moved house two weeks ago and we're settling-in well here - plenty to be happy about.
First of all, the big news - my latest scan is completely clear. I am thrilled with this. The only thing to note is my spleen is still enlarged slightly - but we still think this is its new size because of the amount it was stretched previously. You all have my permission to say "there goes Trev - he's got a big spleen, you know". Plus - you know what they say about big spleens :-)
My Lymphocyte chimerism (ratio of my old Lymphocytes Vs new donor ones) is 87% donor / 13% old. This is good, and slowly moving in the right direction. The old Lymphocytes are where I had the cancer, so I definitely want them gone.
My Lymphocyte count has increased to 0.9. This is still very low, but it has increased from 0.7 last time - so it also moving in the right direction. My antibodies are low too. While these are low, I continue to be at increased risk of catching viruses and not being able to get rid of them without medical intervention. Case in point - I have been suffering from a cold for the past 5 weeks. From week to week it varies in strength - it gets worse to the point where I'm sneezing and coughing with a fever and then suddenly it wanes and becomes hardly noticeable (as it is right now).
So, it's all positive at the moment. Life is good. Work keeps me busy full time now, plus we moved house two weeks ago and we're settling-in well here - plenty to be happy about.
Friday, 3 February 2017
Happy Birthday, new immune system!
On Feb 4th, it will be one year since my new immune system was injected into me in the form of stem cells. I remember being impressed that they were flown in from Germany that day and whisked straight to the hospital to be given to me. I still can't get my head around the miracle that our bodies are - how did the stem cells know they had to form bone marrow? How did they know where to go? I find it all fascinating.
Overall, it's been a good year. It took a few weeks to recover from the intensity of the transplant but from April onwards, apart from the chest infections that put me back in hospital, I've felt quite healthy. Of course, that statement is skimming over a lot of details - looking back at the blog, there were many bumps along the way. In general, though, it's been good.
I have a scan coming up later this month to see if there is any sign of Lymphoma. I doubt I'll have any problems with that. What I will watch closely, though, is when my Lymphocyte count starts to rise - hopefully then my chimerism ratio will improve and I will not create any more mutated (cancerous) Lymphocytes.
Overall, it's been a good year. It took a few weeks to recover from the intensity of the transplant but from April onwards, apart from the chest infections that put me back in hospital, I've felt quite healthy. Of course, that statement is skimming over a lot of details - looking back at the blog, there were many bumps along the way. In general, though, it's been good.
I have a scan coming up later this month to see if there is any sign of Lymphoma. I doubt I'll have any problems with that. What I will watch closely, though, is when my Lymphocyte count starts to rise - hopefully then my chimerism ratio will improve and I will not create any more mutated (cancerous) Lymphocytes.
Subscribe to:
Posts (Atom)