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My Bone Marrow Transplant

Pain is inevitable, suffering is optional.

Monthly Archives: November 2011

We received an email tonight from SGH that the donor has confirmed the dates. I have updated the schedule page. After so long and so many delays and setbacks we are almost there.

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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.

I take Sorafenib to keep my FLT-3 gene normal. When I left HK 2 weeks ago I was given a supply to last me, on the expectation that I would be returning on November 21. As it turned out, the transplant team in Singapore don’t want me to have any more chemotherapy before the transplant, so I came back to Manila.

My Sorafenib supply ran out today. I called a local Haematologist and asked for a prescription for the drug. His secretary called me back and gave me the number of the salesperson in the drug company who I could order it from. I called the rep and explained what I needed – half a box (30 tablets). He said sure, took my details told me the price and said that MedExpress Pharmacy would deliver. Medexpress called me 5 minutes later to say they couldn’t supply without a prescription. I said ridiculous, my doctor had given me the drug company number so I could order myself because he says they don’t need a prescription.

Oh well, as I write I am texting both the doctor and the drug company rep to see how we break through this stupidity.

Update: the Doctor’s secretary is faxing the prescription to the Pharmacy directly. Hopefully this means I can get a delivery tomorrow morning and just miss 1 dose.

Update 2: the Pharmacy called to confirm delivery address and said they needed me to hand over the original prescription to the delivery person tomorrow; which I don’t have as it was faxed directly to them!

 

Update 3: the drug was delivered at 10:00am today so I missed 1 dose last night – it’s happened once before! Very quick and efficient, paid by credit card, well done Med Express.

Just in time for COP 17 the release of another batch of emails showing how corrupt climate science is.

http://blogs.telegraph.co.uk/news/jamesdelingpole/100119087/uh-oh-global-warming-loons-here-comes-climategate-ii/

This website is very good for concise background information about the transplant and recovery process.

http://marrow.org/Patient/Disease_and_Treatment/Understanding_Your_Disease___Treatment_Options.aspx

Linds, my wife, and I flew to Singapore on November 14 for 2 days of meetings and tests at SGH on November 16 / 17. We stayed at the Amara Hotel in Tanjong Paggar, because it is close to my office and to the hospital.

We started at 9am on the Wednesday morning by checking in at the Haematology Centre in Block 7. What a contrast to the BMT unit in Queen Mary’s in HK. It was clean, spacious and quiet. There I was given a form to go and get a heart check which was scheduled for 9:30am in the Basement of Block 5. All hospitals take some time to learn to navigate around them, SGH at least gives you a clear map.

We found the right place by 9:10am and checked in and were asked to pay. We said “we have a Letter of Guarantee from our Insurance company, all costs are covered”. They knew nothing about this so I ended up paying and we waited. And waited. And waited. Hospitals are the same the world over.

Eventually at 10:20am I was called. I was expecting a routine Echocardiogram, but this was different, a MUGA Heart scan. MUGA stands for Multi Gated Acquisition. They inject a substance into you which binds to red blood cells, then after 20 minutes they inject another, radioactive, substance which binds to the first one and then you lie flat on your back and as still as possible while staring at the word Phillips for about 20 minutes.

After that we went back to Haematology for a series of blood tests and our first meeting with the transplant unit head. He was surprised to see me looking so healthy, which I took as a good sign. He wasn’t impressed by the siting of my Hickman Line, but I assured him that it worked fine and that inserting a Hickman into me was a major process. This last one took 2.5 hours! They outlined the transplant procedure for us, showed us the dates, and scheduled a bone marrow biopsy for the following day. We were asked to come back after lunch for the Family Conference. So we went back to the hotel for a quick lunch.

The Family Conference was attended by the head of the unit, the pre-BMT coordinator, another doctor, a dietician and the Sister in charge of the BMT ward. It was a bit of a non-event as it was our third. What was said is summarised on the page “My BMT Facts”. I was also prescribed some Bactrium to start taking on Day -12.

After the Family Conference we visited the transplant Ward with the Sister in charge. The rooms are small but light and airy and the one we were shown had a view towards the container port. The bathroom is very small. Across the fields I could see our old office building, Keppel Towers. The rooms have positive pressure so that when the door is opened the air pushes out. All air passes through HEPA filters on its way in to the room. Then we met with the Dietician, who gave us a list of things that I can and cannot eat in the lead up to and during the transplant and recovery process. That concluded day one.

Day 2 started with a Lung Function test in Clinic A, Block 3 Basement 1. You try finding it without help! This was the test that I was concerned about because of the damage to my lungs from the infection earlier in the year. But the technician who conducted it said that all appeared to be fine. As had happened the day before, the clinic knew nothing about our Letter of Guarantee even though we had a copy! So we ended up paying again.

Next, the bone marrow biopsy, my favourite procedure. They stick a needle in your hip bone and suck out some bone marrow. I had warned them the day before that I have hard bones but the young doctor who performed the procedure was excellent. Of all the biopsies that I have had in the past 2.5 years this was the least stressful! Because my marrow is very dry after the large amount of chemotherapy that I have had they also took some regular blood.

And that was it, we were done. We now wait for them to confirm the dates once the donor has confirmed.

Wikipedia: Sorafenib (co-developed and co-marketed by Bayer and Onyx Pharmaceuticals as Nexavar), is a drug approved for the treatment of primary kidney cancer (advanced renal cell carcinoma) and advanced primary liver cancer (hepatocellular carcinoma).

I was prescribed Sorafenib in June 2011 and I am still taking the full dose. It is rare, according to my doctor, for someone to tolerate the drug this long. I don’t have either of the cancers mentioned above, but studies have shown that it can reverse the mutation of the FLT-3 gene which is known to be implicated in Acute Myeloid Leukaemia (AML). Again, from Wikipedia: Adverse effects of sorafenib include skin rash, hand-foot skin reactions, diarrhea, and hypertension. A case of diffuse yellow discoloration of the skin has been reported. Sorafenib has also been implicated in the development of reversible posterior leukoencephalopathy syndrome and reversible erythrocytosis.

I get a few, transient, skin rashes; my blood pressure is slightly elevated and I get intermittent diarrhoea. I have never had the hand-foot skin reaction. And my FLT-3 gene is back to normal!

I will stop taking the drug a week before the start of the transplant so that it does not interfere with the drugs they will use then.

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