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My Bone Marrow Transplant

Pain is inevitable, suffering is optional.

Monthly Archives: July 2012

Two weekends in a row it has rained solidly! My head cold persists with a headache; not enough of a headache to warrant taking Panadol, but enough to make me feel even more under the weather. My appetite is almost non-existent; breakfast is OK but for lunch for the past 2 days I could only manage bread and a banana. Dinner is a lottery.

The reduced drug doses are producing the usual effect of slightly increased GvHD. My lips are peeling and my upper GI is uncomfortable. There are a couple of little blood blisters on my forearms again.

HK was great, I saw a lot of very close friends, but it is good to be home. I had lunch with some former office mates.

The new Mac Operating System, Mountain Lion, is out so I have been updating Linds and my laptops. Sam has done his which leaves Francesca and the media server. It is a 4Gb download so it take a bit of time to do each machine. We don’t have huge bandwidth on our DSL because it costs so much here.

 

 

The Typhoon which hit HK overnight was the worst in 13 years, signal 10 went up for a few hours during the night apparently. By morning it was back to signal 8. To get a taxi to take me to the hospital for my check up I had to pay a premium.  The taxi had difficulty getting in and out of the apartment buildings as there were 3 trees down! There was a considerable amount of debris along all the roads.

I got to the hospital at 9:30am and went for my blood test and Chest X-ray.Then I went to the RHKYC for a late breakfast but everything was closed. Two huge trees outside the club entrance were down. Those trees have been there since I first joined as an Associate Member in 1985! So sad. I walked to Causeway Bay through the tunnel and got something to eat, by which time Signal 3 was up and the trams started to run again, so I took the tram back to the hospital.

Raymond saw me at 11:30! In all the years he has been looking after me this is, as far as I remember, the first time I have ever seen him before my actual appointment time. The consultation was quite long because we discussed the experimental Azacitidine treatment. He gave me another paper to read which reports on a small scale trial.  The upshot of the discussion was that my immunosuppressive drugs need to be tapered off some more before he feels comfortable starting the treatment, so no rush.

After the consultation I headed for the Pharmacy to pick up my 5 weeks supply of drugs. They were unable to fill the ciclosporin prescription. I need 280 10mg tablets and they only had 120. I have to call them tomorrow to see if they have sourced the rest. I have plenty of 25mg tablets left in Manila, so if they can’t fill the prescription I will use those and have a 45:35 dose instead of 40:40.

The good news is that my blood levels are OK, in fact my Haemoglobin is the highest that I have seen it since the transplant. The cyclosporin dose is reduced from 100mg to 80mg per day, the Itraconazole dose is halved (I really don’t like that drug!), and the Prednisolone is reduced from 7.5mg to 5mg but after 2 weeks I am to stop taking it.

I had lunch and dinner with friends and did some packing. Tomorrow is a shopping and seeing friends day.

Today I woke up feeling really awful. Just what I needed with a flight ahead of me! Even on the way to the airport I was seriously thinking about cancelling the trip, my stomach felt that bad and my hands were shaking. But I persevered, checked in, no Immigration hassle, and headed for the CX lounge. Which was crowded because the flight before mine hadn’t boarded yet. There was a large Sikh gentleman sitting on a 2 seater sofa so I plonked myself down next to him.

Another passenger on my flight tried to switch to the earlier one but it was completely full, Business class on my flight had about 10 people in it. That’s how I like it, nice and quiet and not too many potential sources of infection.

Waiting in the Lounge I started to feel better, then the announcement of a 40 minute delay was made. Then they announced the new boarding time and it was obvious that the departure time they had given a few minutes earlier was not going to happen. We ended up departing 1:05 late. The flight had some rough patches due to us flying through a Typhoon. The seat belt sign was on the entire flight and no hot drinks were served. I did manage to eat most of the lunch which was a good thing as it turned out.

We landed in HK and Typhoon 3 signal was up. The Typhoon which had ruined everyone’s weekend in Manila was hitting HK so I got to experience it twice! Nice!

I took the train to HK Station and the fun started. Lots of people were already in the taxi queues but I decided to join them rather than go up to Departures as it was raining extremely hard. Taxis were coming at about 1 per minute so I reckoned I would have to wait about 30 minutes. Then signal 8 went up and office workers started to go home and there were no taxis coming down to Arrivals. I really didn’t have much choice but to wait it out. Where I had to go I couldn’t take a Bus or MTR.

Gradually people in front of me gave up and i was soon at the front of my queue. I tried sitting on my suitcase but it scooted away from under me and I ended up on the floor looking like a complete idiot. Cap came to join me and brought me water, I gave her the fresh mangos and Bizu macaroons that I had brought for her.  We were supposed to have dinner but postponed it until tomorrow night.

Eventually a lone taxi appeared; after over 3 hours waiting I was finally on my way to Old Peak Road! My total journey time was 9.5 hours. The standing in the taxi queue for so long gave me a sore back and sore feet. But I am here, I had a light dinner and am preparing for the check up tomorrow. I have to fast from midnight so I will be a grumpy lad until after the blood taking at 10am.

I’ve had this head cold and non-productive cough for a week now. I guess my system is finding it hard to overcome because of the immune suppression. Hopefully the anti-bacterial co-trimaxazole, which I only take at weekends, will help to kill it off. The nausea has been stronger the past 48 hours, especially at dinner time, which isn’t helping. Maybe the doctor will prescribe some antibiotics for the cold when I see him on Tuesday. My Itraconazole supply is critically low so I have cut down the dose to make it last.

The weather doesn’t help, it’s been raining hard most of the past 2 days. Real, heavy, asian rain. Proper rain; not that pussy stuff they “endure” in Europe. I swear that our apartment was in low cloud when I woke up at 6am yesterday morning. When you can’t see a major city centre about 2km away through the rain, that’s rain! There were a few fools on the golf course when it eased a bit, and the Polo field was well on its way to becoming a boating lake on Saturday morning.

I foresee a long discussion with the doctor next week about this experimental treatment they are thinking of putting me on, Vidaza (Azacitidine) at low doses.

I am going to stop posting every day and only post on days when something significant regarding my health occurs. So there will be posts next week when I have my check up.

Today has been a good day. Eyes OK, stomach OK, just the swollen feet.

The HK and Singapore doctors are discussing giving me 4 – 5 rounds of Azacitidine, 4 – 5 days per cycle. This is an experimental approach which has shown good results in limited trials so far. You can read the preliminary results abstract on my pages. It turns out that SGH has been trialling this, but did not suggest it for me as I am a tAML patient (MDS transformed to AML). They have approval to start Phase 2 trials now. The discussion has moved from “should we do this?”  to the point of “do we wait until after the immunosuppression is stopped, or do we do it now?”

I dropped by my old office this afternoon to say Hi to the people there. It was great to see them all.

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