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My Bone Marrow Transplant

Pain is inevitable, suffering is optional.

Category Archives: SGH

Life has been pretty stable during the first month of 2013. On January 2nd I started a 6 month contract with an LA based BPO with office in Manila and Chennai. I did a long haul flight to LA and got sick; actually I got worse, I already had a cold when I left. It meant I lost a days work as I was tucked up in my hotel bed. I managed to fly back and spent the weekend in bed with very bad sinus pains, so I went to St. Luke’s on the Monday and had a thorough check up, blood test, the works. All was fine so no long term issues.

My steroid dose has been at 2.5mg daily for a week now and I feel OK. My weight is stable at 82kg. I’ll ask Raymond next weekend if I can stop the steroid entirely. Last time I stopped it I had a massive GvHD flare up in my gut, I hope that it is not going to happen this time. The other good thing is that when I stop the steroid I can also stop the anti-fungal.

Anyway, to the title of this entry: my feet are swollen again. It’s been weeks since they were this size. Yesterday they were fine, today noticeably swollen. I need to  monitor what I eat and drink to see if it is diet related. I don’t think it is as I haven’t eaten anything out of the ordinary, even at the BSM International Dinner last night. The skin on my feet and ankles feels a bit tight as well.

There was a beautiful double rainbow over Manila Golf Club this morning. I was already feeling happy but that boosted it.

I’m off to Singapore next week for a thorough check up and pick up some more medication. My supplies are almost exhausted, except of the steroid, but I should be OK until Wednesday next week.

I am back on the steroid Prednisolone to control the gut GvHD, and it is doing a great job. I feel so much better without the constant gut discomfort. My appetite is much, much better and I am gaining weight again. However, I am not sleeping as well.

Unfortunately I was also instructed to go back on the dreaded Itraconazole! I have discovered that the liquid form is not available anywhere in Manila, so I have had to switch to the tablets which don’t absorb as well. I’ll pick up a large supply of the liquid form at my next check up in Singapore in 2 weeks time.

You can buy both medicines over the counter in Mercury Drug here. The Prednisolone is cheap, the Itraconazole is not!

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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.

No hallucinations last night, the sleeping pill worked. Did have a minor temperature spike to 37.8C so they kept a close eye on me during the night. This morning my temperature is back to 37.0C

Pre-breakfast medication – check; Cyclosporine – check.

Breakfast arrives – no retching! 2 Croissants and a cup of Milo downed with vigour! I cannot remember the last time that this happened.

RBC at 7.9 is a bit low so I will get a transfusion later, Platelets are 99 and WBC is 7.8.

Josep, Steven, Karen and Emeric from the Cambridge office dropped by for an hour which was very welcome.

Thorough eye examination shows my grades are almost OK but the Astigmatism levels have changed significantly. There are some small signs of cataracts in both eyes but nothing to worry about. I have a new prescription and will have new lenses fitted next week. Maybe I should have waited for this because I found it a bit stressful being around people while I waited outside offices and for people to wheel me hither and thither.

I don’t know what medication they gave me last night but I spent the whole night watching the most weird, beautiful and sometimes disturbing images being generated by my brain. If you could have videoed it it would win Oscars in every category. Tonight they will give me a sleeping pill. I have had some of my weirdest dreams ever during this stay in hospital.

So far today I have retched once and eaten: 1 pancake, 2 bananas and a curry puff. Drink has been  2 cups of Milo, 2 cans of PokkaP Green Tea and the odd sip of water. Dinner has just been served, let’s see how that goes down. Later: it didn’t.

The Bone Marrow Biopsy was done late morning; I would rate the doctor a 7 out of 10. Afterwards I had to lie flat on my back for 2 – 3 hours to help stop the bleeding. The BMB entails you assuming the position as if you were about to receive a digital prostrate examination; older men will know of what I speak. Then they inject some Lidocaine local anaesthetic close to where the hip and the spine meet, Then they stick a needle into the hip bone, which can take several minutes and suck out marrow. The worst part is when they suck out the marrow which is the most peculiar sensation. The doctor will say “big breath on 3”, he counts to 3 and on 3 he sucks the marrow out and you take a deep breath in to minimise the discomfort. They sucked 4 times to get a full sample because my marrow is quite dry after all the chemo that I have had. And just to remind you of who is in charge he then trephines a piece of bone for DNA and Genetic analysis.

Elcee and Jonji came to  visit again before heading back to KL on the coach this evening. I was very sad when they had to leave.

Big day today with a long visit from Elcee and Jonji Villa. Who bought several cans of PokkaP green tea. Yum.

Appetite is marginally improved, retching is a bit less. I have developed weird watery blisters on my left elbow. The doctors aren’t fussed by it so neither will I be.

Optician came to check my eyes and says all looks good but they will do a thorough examination at 1pm on Friday at the Singapore Eye Centre. Oh joy, another excursion from Suite 4801.

Even bigger day tomorrow, the first Bone Marrow Biopsy since the transplant to check what is happening.

Discharge confirmed for Saturday afternoon as soon as Linds gets here and brings me some clothes.

The sun is your enemy

Long conversation with Dr. Goh about sunblock, times to go out, wear a hat, etc.

The medication regime after discharge is going to be quite complicated as well. Some drugs 1 hour before food, some 2 hours after. If I have an appointment then on that day I must not take one drug until after they have taken blood as they want to measure residual levels.

Tony came to visit me today, judging whether I was fit enough for our bet on Hull v. Ipswich in the FA Cup this weekend.

I also spent my second night without any drips connected, and have been walking around to gain stamina.

I still can’t take much hospital food but bananas are good and the Ensure meal replacement milkshake stays down.

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