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My Bone Marrow Transplant

Pain is inevitable, suffering is optional.

Category Archives: HKSH

I forgot that I hadn’t posted this, it was in draft form until I remembered it today.

I had a normal check up last Tuesday in HK. My blood counts continue to surprise me by slowly and steadily getting better each check up. My RBC is at 3.16 and my Haemoglobin at 11.6. I haven’t seen an RBC above 3 since the transplant.

We have stopped Mycophenalate, one of the two immune suppressants that I have taken since the transplant, and will reduce the dosage of Ciclosporin from 50mg per day to 40mg per day in 2 months time. Every drug removed or dosage reduction is another small victory on the way to full recovery.

We are in the very north of the Philippines for Holy Week, staying at Sitio Remedios, a beautiful little resort of old Ilocano houses assembled on abeach by Dr. Cunanan. The last time I saw him was two years ago in the ICU in St. Luke’s Medical Centre, prior to my being airlifted to HK. It was great to meet him again in much better circumstances.

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Today I am in Hong Kong for my monthly check up. I’ve been having nausea and vomiting problems for some time now which seemed to have started with the switch from Noxafil to Sporanox. 2 or 3 times a week I have been throwing up before breakfast and at other meals I will just look at the food and say “sorry, I can’t eat this”. It happened at lunch today after my check up. We went to a Japanese Curry house in Windsor House. I sat down, looked at the menu and, just from the pictures, I knew we were in the wrong place. So we went to a Noodle shop and I had Ebi Tempura with Udon; Cap had cold Soba. Yesterday I wasn’t sure until I got to the airport in Manila whether I would be on the plane. I had been throwing up quite violently from about 7:30am to 8:30am and was feeling weak and queasy.

Anyway, back to the little matter of my check up. I am OK. I’m anaemic, but that’s normal. My Haemoglobin has gone down very slightly again, but my Creatinine is the best that it has been for 4 months which means that either my kidneys are functioning better or I gamed the test by drinking a lot of water before the blood test this morning! The Chest X-Ray shows no change.

My drugs have been adjusted again. The Cyclosporin has been reduced from 60mg a day to 50mg, the Acyclovir which has been at 800mg a day since the start is reduced to 500mg of another antiviral drug which is a derivative of it. But the big news, dear reader, is that the dreaded Sporanox has been stopped. Hooray! Sound the trumpets and ring the church bells throughout the land! Tonight I will ceremonially pour the remains of the bottle which I have with me down the drain. Hopefully in a few days my stomach will start to return to normal and I won’t be such a picky eater.

Raymond is pleased with my progress, and I am eternally grateful that I have such a great guy as my haematologist. Thank you James for finding him for me way back in June 2009. Next month it’s back to Singapore to see Dr. Goh.

 

 

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 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.

Today was chemo day 2 of 4. Surprisingly I don’t feel as bad tonight as I did yesterday night, but I am a bit shaky when moving around so things have to be done deliberately and with forethought. The low BP has gone which is a relief, must have been due to some of the anti-everything drugs and the chemo has balanced it out. My appetite is still fine, I ate 3 hearty meals today and an afternoon snack.

One nice thing here is the range of food. When I thought the transplant would be done in Queen Mary’s Hong Kong I was seriously concerned about starving; their food is really awful and there are no choices. HKSH was better but we learned not to order the Western food except the breakfast. Now I get to order Chinese, Western or Indian and for each day there is a choice of 2 dishes of each. As you order a week in advance you forget what is coming; tonight was Tandoori Chicken with rice and stewed beans and cabbage. Very tasty! However, on Day 0 they will switch me to the Ultra clean diet where whatever I order will be cooked normally then steamed for 20 minutes. Guaranteed no flavour then.

Elcee, her son Luis and Yaya Annie came to visit during the afternoon before they hopped on the bus back to KL. Linds went for a 30 minute walk around the neighbourhood this evening. She has a Caregiver’s armband so she can come and go as she pleases. Her cousins have lent us a red fold up bed on which she sleeps, tonight being her second night here.  Linds has been deliberately skipping meals, fasting for a purpose, she says.  She’s read Steve Jobs’ favourite diet book, Mucusless Diet and Healing System, and agrees with its principles.

What do you do with yourself when you spend large amounts of time in a hospital room the size of a budget hotel room? I’ve got lots of experience of this. You adapt. You build coping mechanisms and develop a routine around the hospital routine. But above all, you use the internet! Laptop, iPad and Phone are all essential tools for keeping you going.

The isolation ward rooms have a bed, enough space around the bed to walk and put a couple of chairs, one of those hospital table thingies which you can never get in quite the right place for it to be useful; a small bath room, and a TV. They say that they can fit another bed in for Linds so that she can sleep with me but it must be really small. Oh, and a wardrobe which Linds says will be big enough for 2 or 3 of her T-shirts. The TV doesn’t even have an HDMI connection, but at least they have the HBO channel, which is a first for hospitals in my experience.. There will be free WiFi. Will it be like the HKSH free WiFi which I had to hack in order to be able to download files and send emails, or will it be open? I will take in a 3G to Wireless router which I bought for HKSH.

So I will go into the room with approximately 400Gb of Movies, TV shows, Music and Books loaded in my laptop and on an external drive. I’m downloading a lot of stuff at home and deliberately not watching it, saving it for those moments when the view of the Singapore Container Port palls. Of course, for the first 3 weeks I will probably not feel like watching or doing much due to the chemotherapy blast and the shock to the system of the transplant, but you never know.

Then there are Skype calls to make, emails to send and receive, this blog to update, generally keeping up with the news of the day, following the fortunes of Liverpool FC, Ipswich Town and the England Rugby team in the 6 Nations. To keep my mind sharp I play Backgammon and Jamble (Scrabble) online on a site called http://www.itsyourturn.com.

And, of course, chatting to visitors if and when they are allowed. In the isolation ward they are discouraged except for close family, hopefully they are allowed in the recovery ward.

Not to give too much history as this is supposed to be a record of what is to come, hopefully daily.

I was diagnosed with Myelodysplastic Syndrome – MDS – in mid 2009 after having slowly declining blood counts for a year. I was treated at Queen Mary’s Hospital in Pokfulam in Hong Kong with a full chemotherapy regime from July 2009 through January 2010. This was:

– an induction dose of Cytabarine (7 days) concurrent with Daunrubicin (3 days)
– 2 doses of Cytabarine (5 days) plus Daunrubicin (2 days)
– 4 doses of High Dose ARA-C.

I was in remission from the first dose and I recovered quickly from each dose. In December 2010 I had a routine blood check and noticed that my counts were declining. A bone marrow biopsy in January 2011 confirmed that I had relapsed. I had a new Hickman line inserted at the end of January and had a week of Azacitidine as an outpatient at the HK Sanatorium. Why the hospital change? My doctor had moved. Azacitidine was used just to control the disease while a transplant could be scheduled.

I had a second dose of Azacitidine at St. Luke’s Medical Centre in Bonifacio Global City, Taguig, Philippines in early March and all seemed to be well. A couple of days later on March 9 I was admitted with a high fever and was soon in the ICU in a coma. I had a very bad lung infection which was threatening to kill me and I was placed in a coma and put on a ventilator. On March 20 I was taken to Hong Kong by air ambulance and went into the ICU in the HK Sanatorium. I was woken up on March 26 and moved out of the ICU on March 29.

When I woke up I was so weak that I could not walk. It took weeks of physiotherapy to get me mobile again. After my lung condition was stabilised the doctors could get back to treating the MDS. A bone marrow biopsy showed I had 15% blasts and I was started on a mild dose of ARA-C. This is where medicine becomes art rather than science. Too strong a dose means a higher risk of complications, too low and it won’t be effective. Meanwhile a search for a new donor was initiated as my donor had become ill and was no longer able to donate. At the same time the BMT unit in Queen Mary’s was experiencing difficulties and declined to take me as they had a long waiting list of people with better survival prospects.

My doctor contacted Singapore General and they agreed to take me and initiated a donor search. This was in June 2011. Eventually 3 excellent donors were located, 1 in Poland and 2 in the USA. The Polish donor was not available, but blood samples from both US donors were sent to Singapore and matched against me.

On November 9, exactly 8 months after I was admitted to hospital, I was discharged and flew home.

Finally, after 5 months we have a probable date for the transplant; December 8 is the start with Day 0 on December 15.

In my next post I will comment on Sorafenib (Nexavar), followed by an account of our first visit to Singapore General Hospital last week.

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