Archive for category Leukemia
It’s been a really long time since I last updated this blog. It was in February. I’ve even had to check my blog for that! Lots and lots have been happening since February. Some good and some bad.
This is a bit of a hit and miss. I’ve been fighting a persistent cold (Rhino virus) since December 2011. And it’s just going away. Also, since the CMV virus has reactivated in my body, I’ve been on Valganciclovir and it’s proving to be murder on my blood count. I’ve found myself neutropenic many many times, and needing GCSF jabs almost daily to keep my blood counts up.
I’ve also been warded 2 times in the last 4 weeks for infection, the last one a chest infection that took over nearly 1/2 of my left lung!! Not very nice. Thankfully it’s all clear now and even the cold seems to be retreating a little.
Sophie’s just turned 9 months old. She’s crawling and learning to walk (every parent’s nightmare). She’s also really curious and very very observant. We’re taking a long deserved holiday back to Asia to see the rest of the family in a few days and everyone’s really looking forward to meeting her.
The wife’s hanging in there, pushing herself to the limits everyday to make sure that Sophie gets the best that she can get. So a typical day in the life of the wife is:
07:00 – Wake up and breast feed Sophie
09:00 – Wake up and take over breakfast feeding duties from me
10:00 – Dress Sophie and take her to playgroup
11:30 – Lunchtime (Sophie’s)
12:30 – The wife inhales her lunch if she’s lucky.
14:30 – Monkey Music or a walk in the park, if the weather is good.
15:00 – Breastfeed Sophie
16:00 – Back home and Mummy play time with Sophie
17:30 – Dinner time (Sophie’s)
18:15 – Sophie’s bath time
20:00 – Dinner (ours)
23:00 – Bed time
A pretty packed day with plenty of stimulation and activities for the little one, which I’m sure is one of the reasons why she’s so observant and curious. But then the wife is exhausted by the end of the day.
Work’s been a bit of a disaster to be honest. While they’ve been very good to me while I was undergoing treatment, now that I am back full time (albeit 3 days in the office and 2 days from home), I still can’t commit the time and energy that I want to due to the fact that I can only travel off peak and need to take time off for clinic visits.
So they can’t assign big, juicy projects to me; the very thing I was hired to do. It’s immensely frustrating to see projects like these assigned to someone else.
It’s also been a long hard slog since I’ve been diagnosed (in more ways than one), and the wife and I have been really looking forward to this break for a very very very long time. So while everyone fawns over the little one, we’re going to have a good, nice, long break. 🙂
And counting! 22 more days to day +200! Another major milestone. Well, it’s not all be smooth sailing over the last few weeks. I had to go into the hospital 3 times in the last week. First on Monday for my regular clinic sessions, then again on Thursday (more about that later) and then again on Friday (ditto)!
When I went in for my regular clinic last Monday, my blood counts were very low. My neutrophils were at 0.1, which was alarmingly low. Knowing that it wouldn’t have fallen to that level overnight, and knowing the stuff that I was up to prior to the clinic, it’s probably a wonder I hadn’t gotten an infection! So the doctors were obviously concerned, and asked me to come back again on Thursday for another test. Plus they gave me a couple of GCSF jabs to help boost my blood counts.
What scared me most was that one of the doctors actually told me that they’re worried about a relapse and have booked a bone marrow biopsy for Thursday. But he also said that it was very unlikely that it was a relapse, as my other blood results have been very positive. It was simply a precaution.
So on Thursday I dutifully reported into the outpatients department again, got stabbed yet again, but my blood counts were still low. There was some good news though, the CMV levels in my blood were negative and I could stop taking the valganciclovir and the septrin, both of which could cause my blood counts to drop. They also reduced my ciclosporin dose, which would help my immune system fight off this darn cold I’ve had for the last 7 or so weeks.
The downside to all the reduction in antivirals is that I need to take an infusion of Pentamidine every month. The good news it that it’s done on the same day as the clinic, so I only have to come in once a week but I’d have to stay longer.
The biggest bummer is that I still have to come into clinic once a week. I was hoping that I would be seen less often at this stage, but as they’ve just removed my anti-virals completely, it would be ‘wrong not to monitor’ me, according to the consultant. It’s a drag coming to clinic once a week, and it just takes up so much time. Hopefully I can move on to less frequent visits soon.
But for now, looking forward to day +200.
It’s 5 months now since my transplant. I know that cos Sophie’s 6 months old and my immune system is 1 month younger than her. It seems like an eternity to be honest and I can’t wait for the all clear from the doctors. The bad news is that I may have a chronic version of GvHD. I’m starting to get small, brown lumps all over my body.
The consultant reckons that it MIGHT be GvHD, or it could be an effect of the medication and/or radiation on my skin. If it is GvHD, there’s no effective treatment for it. It’s also very itchy, but that’s because it causes the skin to be very very dry, made worse by the very cold weather that we’re currently having in Europe.
His remedy? Moisturise and moisturise very very often. Apply the steroids to the hands and feet, and call them if it gets worse. He did say that he couldn’t tell that my skin had the little lumps. It was only something myself or the wife would know since we’re more familiar with my skin. So as far as he’s concerned, it’s a small problem. He also did mention that the Leukemia almost never comes back when patients have GvHD 100 days after transplant.
I take it as a good sign, but I don’t really want dry flaky skin all my life. But considering the alternative, it’s probably a very good deal.
On a separate note, I’ve added a twitter feed into the blog. I’ve not had much time to update the blog with the baby and work and stuff, so twitter seems like a good way to keep updated on things, albeit in a much briefer way. If you’re on Twitter, you can follow me @funhousediary. 🙂
Day +134 has come and gone. Nothing much to report (thankfully) except that I still attend my clinics weekly (annoyingly)as the consultant is still worried about the ‘minute levels of the CMV virus’ in my blood. That and the fact that the Valganciclovir that I am taking for the CMV infection has decreased my Neutrophils, Platelet and Haemoglobin levels.
So far, it’s been good. I’ve caught a bug though (Rhinovirus) and it’s giving me a cough, sore throat and a runny nose. It’s one of a possible 103 variants of the Rhinovirus, and there’s no effective treatment for it. It’s otherwise known as the common cold. I’d rather catch the common cold than one of the 7 nasty viruses that they don’t have a treatment for and is dangerous and that I would have to be hospitalised! That would be tragic.
My meds have also been reduced. I’m taking the Valganciclovir once a day now (not twice), they’ve removed the Lamivudine (for Hepatitis) and they’ve reduced my Cyclosporin dose to 75mg twice a day (from 100mg). Now the thing to look out for would be the return of GvHD, which sometimes follow on from a reduction of the immunosuppressants. But I still apply my steroid cream once a day on my hands and feet, so hopefully I will be able to nip it in the bud this time.
It’s been a very busy week at work and at home. I’ve just delivered my first project in nearly a year. It’s a small, simple one, but it was good to do it. At least the brain cells are still functioning. It’s also the week Sophie’s getting baptised. So we’ve invited some friends over to the church for the ceremony and to the pub for a few drinks and some cake (a proper one this time). And to top it all off, it’s Chinese New Year! Year of the water Dragon apparently, and one supposedly full of turmoil and conflict. But we take the year as it comes. 🙂 It’s also the first time we have to give red packets. And the first person we’re giving it to would be, you guessed it, our little Sophie.
Speaking of my Mum and Auntie, it’s been 2 weeks since they left. And we’re slowly adjusting to the routine of work (mine) and home with Sophie in the picture. Trying to balance work, looking after a little pocket rocket, chores, cooking, cleaning, etc is no mean feat. So we decided to get a cleaner in every fortnight to help us with the cleaning. So that should help somewhat.
Anyway, here’s to more good health and good fortune in the year of the Water Dragon. As an Ox, I am stubborn and resilient. 🙂 So come what may, I will prevail.
24 Dec 2010 – Diagnosed with Acute Lymphoblastic Leukemia (ALL)
29 Dec 2010 – Admitted into the Sainsbury wing at Hammersmith Hospital, London to begin treatment for ALL
29 Dec 2010 – Hickman line inserted
31 Dec 2010 – Transferred to Dacie Ward
01 Jan 2011 – Course 1 (Induction – Phase 1) of UK ALL XII begins
29 Jan 2011 – Course 1 (Induction – Phase 1) of UK ALL XII ends
03 Feb 2011 – Officially discharged from the hospital (also the wife’s birthday, also the 1st day of Chinese New Year)
25 Feb 2011 – Admitted into Dacie Ward to begin Course 2 (Induction – Phase 2) of UK ALL XII
01 Mar 2011 – Course 2 (Induction – Phase 2) of UK ALL XII begins
29 Mar 2011 – Course 2 (Induction – Phase 2) of UK ALL XII ends
04 Apr 2011 – Officially discharged from the hospital
26 Apr 2011 – Admitted to Ward D7 to being Course 3 (Intensification) of UK ALL XII
28 Apr 2011 – Course 3 (Intensification) of UK ALL XII begins
30 Apr 2011 – Transferred to Weston Ward
22 May 2011 – Course 3 (Intensification) of UK ALL XII ends
28 May 2011 – A donor has been located!
01 Jul 2011 – Course 4 (Consolidation – modified) of UK ALL XII begins.
28 Jul 2011 – Course 4 (Consolidation – modified) of UK ALL XII ends.
08 Aug 2011 – Sophie Colette Wong joins our little family!
02 Sept 2011 – Admitted to Dacie Ward to begin the conditioning for the stem cell transplant
09 Sept 2011 – Stem Cell infusion begins
30 Sept 2011 – Officially discharged from the hospital post transplant
09 Oct 2011 – Day +30 post transplant
29 Oct 2011 – Day +50 post transplant
18 Dec 2011 – Day + 100 post transplant
09 Mar 2012 – 6 months post transplant
17 Mar 2012 – Day +200 post transplant
08 Aug 2012 – Sophie’s one year birthday 🙂
09 Sept 2012 – 12 months post transplant
Looking forward to those dates in 2012. 🙂
That’s right. I’ve passed yet another milestone in my battle with the Funhouse Fever. It’s day +101 today. Apparently it’s a very big deal to pass the day +100 mark. I wish I can say it’s been uneventful, but no such luck. So far I’ve had a mild infection of the upper respiratory tract (no hospitalisation, thank goodness), a mild case of the GvHD (again, no hospitalisation required) and a reactivation of the CMV virus (alas, hospitalised).
While it’s not been as smooth as I would have liked, it’s not been rough as well. I spent most of my time at home and out and about when I can manage it. I worked from home (and enjoyed it too) and have been generally healthy and fine. I generally feel a lot better now than I did a month ago. I have more energy, my appetite is returning and I can walk for a lot longer without feeling out of breath. On a less positive note, I still feel cold most of the time. This makes taking a shower in winter a very unpleasant experience. Doesn’t help that the shower apparatus in the flat is a little temperamental.
To celebrate my 100th day post transplant, the family and I decided to have lunch at Singapore Gardens, a restaurant in the very chic St Johns Wood. But before that, we took a drive south west to Croydon. We are going to move to a nearby area in the new year, so it made sense to check it out before we moved. Overall it was a nice day out, besides a nappy disaster from Sophie which sparked a frantic hunt for a pair of baby tights in the stores.
We then drove to the restaurant (which was in the north west of London) and spent almost 1.5 hours in the car due to traffic. Luckily they kept the table for us and we had a very enjoyable meal. We started lunch very late so we had a very simple dinner, with a bottle of sparkling apple and ligonberry juice from Ikea. It was delicious by the way!
So far so good I say, and although the first 100 days felt like an eternity, it’s a nice feeling now that it’s come and gone. The next milestone to look forward to will be day +200 and then 1 year post transplant. For now, I am looking really looking forward to an uneventful Christmas at home with the family. 🙂 It will be Sophie’s first and we have champagne and a roast planned, so it will be good. All I wish now is for an uneventful 99 days and an even more uneventful 265 days to the 1 year mark.
One would think that having gone through 3 rounds of intensive chemotherapy, one round of radiotherapy and pre-transplant chemotherapy, I would be rid of pill popping for a while. Nothing is further from the truth. I reckon I am taking more pills now than I ever was.
The rubbery looking white and grey pills are immunosuppressants (cyclosporine), and I take that 2 times a day; the pills with the M500 on them are also immunosuppressants (myfenax), also 2 times a day. The large white pills are anti viral pills (Valacyclovir) and I take 4 pills (yes, 4) 4 times a day. The white capsule is the Lanzoprozol, to protect the stomach lining, once a day; the pink pill is Levofloxacin, an anti bacterial pill for my infection, twice a day and the small orange pill is Lamivudine. This one’s for hepatitis.
I suppose I should be thankful. I’ve been told that some people take even more pills. This is, apparently, fairly standard. The consultant has hinted that I will be able to reduce the pills soon, so it won’t be such a chore to remember what to take when.
The thing about taking meds is that they run out, and I have to get another prescription from the doctor and head to the pharmacy to pick them up. Normally in other countries, one would have to pay quite a lot for the pills but here in the UK, under the NHS, you’d only have to pay £7.40 per prescription. But it still adds up. Luckily for me, I have a concession from the NHS (all cancer sufferers do) and I won’t have to pay for prescribed meds for the next 5 years.
I really can’t imagine having this condition in Singapore or Australia where you’d have to pay full price or close to full price for prescription medication. That alone would be enough to drive someone to bankruptcy! I reckon I’ve siphoned enough out of the system to not complain about paying taxes ever again! 🙂