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My Bone Marrow Transplant

Pain is inevitable, suffering is optional.

Category Archives: Philippines

Yesterday I went to see Dr. Ruth D at SLMC because she is a pulmonary specialist and I have a head and chest cold and cough. I haven’t seen her since I was in the ICU in SLMC last March. She was the doctor who kept me alive long enough for me to be airlifted to Hong Kong. She helped save my life. She’s a wonderful, cheery, chatty person who is a delight to be with.

The first words out of her mouth after the usual pleasantries were “what prednisolone dose are you on?” That threw me; I’m used to haematologists asking such things but from a pulmonary doctor it was something new. She took careful notes of my current drug regime, and from the questions it was obvious that she knew a lot about GvHD. She asked me where my GvHD presents and I told her the gut, mouth and infrequently the skin. She said she had a patient who had a transplant 8 years ago and the GvHD is only on her tongue. We had a discussion about bronchiolitis obliterans, the most dreaded GvHD, and also scleroderma. She listened to my chest, prescribed a whole lot of medication including a new antibiotic, nagged me to exercise more and sent me on my way.

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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I was a tad premature with my last post. The two days following have been very bad on the Upper GI GvHD front. Vomiting before taking pre-food drugs is a new one, and my weight has dropped to below 80Kg. It has not been this low for very many years.

So this morning I had an Endoscopy at St. Luke’s Medical Centre and it confirmed stage 1/2 GvHD. I sent the results and the pretty pictures of my small intestine off to the transplant doctors. Now they want me to have a blood test and a renal function test. What that has to do with my intestines I’m not sure.

Slowly but surely my appetite is returning. I still have the occasional upchuck in the morning, but much less frequently than before, and the chance of me sitting down to dinner, looking at the food and saying “I can’t eat this” is getting less and less. The past 2 nights I have eaten quite a lot of pasta for dinner. Itraconazole, I consign you to the bowels of hell!

Now I need to get rid of the edema and things will really be on the up and up.

Good luck to Bobet and Irish in the Berlin Marathon this weekend. Bobet, you are an inspiration to a great many people, running marathons after all that you have been through and are still going through.

I met a 75 year old Japanese resident of Manila yesterday. He asked me why I was retired when I was so young(!) so I explained about the Leukaemia and the transplant. He then told me that his first wife and his sister both died of Leukaemia. He has donated a lot of money to the Bone Marrow Registry in Japan.

Also last week I met Rick, a Brit in HK, for the first time. Rick is a friend of Marco, a good friend of ours who lives in Bangkok. It turned out that Rick had got himself typed to be a donor by the HK Red Cross in 2009 when I was first diagnosed and the call for a donor drive went out from James. The kindness of strangers to try to save the life of someone they have never met. Another humbling moment for me.

A little bit of sadness this week because Francesca left to go back to Bristol for her final year. She is spending 2 days in Dubai on the way, staying with Marty and Jeremy, friends from way back when in HK. She’ll be home next in December for Christmas and New Year. She interned with 2 media related companies this summer and according to one reference letter that she was given she can almost walk on water. That’s our girl!

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.

Francesca, Chia & Sam with some of the surgical team

Francesca & Chia with a patient waiting for his operation.

Linds took Francesca, Sam and Chia to an Operation Smile mission north of Manila. Operation Smile is a charity which gets medical teams to donate their time to repairing hare lips and cleft palettes in young children. Linds’ Dad was the President of the Philippines branch for many years so she has been before. They talked to the parents and played with the children to keep them calm while they waited for their turn in the operating theatre. Yesterday they went shopping for toys to take with them to give to the kids.

I had a bad start to the day, my eyes were very bad and my stomach was not feeling good even before I took medication, so not surprisingly I found myself vomiting 40 minutes after taking the Itraconazole. I vomited again while I was eating my fruit. The head cold is easing slowly which is good. To cheer myself up I listened to the latest program in the long running BBC Radio 4 Comedy nonsense quiz “I’m Sorry I Haven’t a Clue”. It’s been going for over 40 years and is still as funny as ever.

Someone posted a very interesting article about a new drug treatment for cGvHD which I am including here and as a page. There is also a new page about using Azacitidine (Vidaza) post transplant to improve survival which my haematologist sent to me.


An existing drug dramatically  reduced the most serious complications of bone marrow transplants, University  of Pennsylvania researchers are reporting
Thursday.
The finding could  someday point the way toward an entirely new method of preventing the body  from “rejecting” transplanted organs of all kinds in the
future, experts  said.
The work demonstrates a possible new approach to transplants of  donated bone marrow, said Joseph Antin, a professor of medicine at Harvard,  who was
not involved with the study.
“It is the first time that someone has  tried to do this, which makes it fascinating in itself,” Antin said. “Now what  we need to do is confirm it” and compare how patients fare with and without  the drug in a randomized trial.
Antin chairs a committee in the Blood and  Marrow Transplantation Clinical Trials Network that will design such a trial  that could begin in a year or so.
For decades, transplants of nearly all  organs have been possible only with the use of powerful medications that  suppress the immune system so that it
doesn’t attack the alien organ. But  those immunosuppressant drugs can be toxic to other parts of the body and  leave recipients vulnerable to dangerous infections, often for the rest of  their lives.
Rather than searching for better immunosuppressant drugs, the  Penn researchers asked a different question: “What if we let the immune cells  do their job” – attacking cancers and other diseases “and we just tell them  where to go and where not to go?” said Ran Reshef, lead author of the paper published Thursday in the New England Journal of Medicine.
It turns out  that the traffic signal already exists. It is maraviroc, a drug that has been  on the market for five years to treat HIV.
The bone marrow study evaluated  only 35 patients, and the first-time finding must be replicated in larger and  longer trials. Whether the mechanism would work with transplants of other  organs is at this point hypothetical.
Still, several independent  researchers said the concept is sound, and the problem it tries to solve –  organ rejection – is major.
“Transplant surgeons would love to do two  things: to operate during the day” and avoid rejection, said Cataldo Doria,  director of transplantation at
Thomas Jefferson University Hospital, who, like  others, praised the study as “promising.”
The Penn study tested the HIV  drug for prevention of graft-versus-host disease, the most serious  complication of donor bone marrow transplants. About 10,000 Americans a year  receive these transplants, often after other treatments for leukemia and other  cancers have failed.
Because the bone marrow creates immune cells along  with blood cells, a transplant imports a new immune system to use against the  cancer. To the donated immune system, the recipient’s entire body is  alien.
Attacks on organs create graft-versus-host disease in 30 percent to  70 percent of patients.
After the researchers added maraviroc to the  standard immune-suppressing regimen for 33 days, they found that just 6  percent of the patients developed a severe form of the disease; typically, 22  percent would have.
After one year, 15 percent of the patients developed  severe disease, compared with the normal 29 percent. There were few side  effects. The early-phase trial had been intended to test only the safety of  the drug. “We didn’t really expect to see any efficacy results,” said Reshef,  who said the finding “was amazing even to us.”
If future trials are  successful, he and others predicted that maraviroc could become a supplement  to standard therapy for donor bone marrow transplants, probably not a  replacement.
Maraviroc is made by Pfizer, which won approval of the drug  for HIV in 2007. It did not initiate the Penn study but contributed funding,  as did the National Institutes of Health, the Leukemia and Lymphoma Society,  and other groups. A Pfizer spokeswoman said the company would not speculate  about the findings.
The drug treats a specific type of HIV by blocking the  path, known as a CCR5 receptor, that the virus uses to enter immune  cells.
For graft-versus-host disease, the researchers took advantage of an entirely different mechanism, known as chemotaxis, which controls where and  when
cells move around the body.
Just as traffic lights along South Broad  Street must be turned on by an electrical current before they can direct cars  to, say, Citizens Bank Park, the CCR5 receptors on cell surfaces must receive  specific chemical signals called chemokines to direct the immune cells to the  liver.
Maraviroc is known as a CCR5 antagonist because it attaches to the  same receptors and blocks the chemokines, leaving the cells without direction  and
protecting vital organs such as the liver from  attack.
Graft-versus-host disease is most severe in the liver and gut; CCR5  is involved with trafficking immune cells to those same organs.
After a  donor bone marrow transplant, immunosuppressive drugs typically are tapered  off as the new immune system adapts. By contrast, transplants of
“solid”  organs, such as the liver, kidney, and heart, require lifelong suppression of  the immune system to avoid attacks on the new organs.
The trial did not  investigate whether using a drug to block the CCR5 or other receptors would  work with those organs, but researchers said the concept would be the  same.
“There have been laboratory experiments that suggest that that’s  true,” said David L. Porter, a senior author of the Penn paper and director of Penn’s blood and marrow transplantation program. And studies have found that people with a particular deletion in their CCR5 receptor are less likely than others to reject a transplanted kidney, he said.
In an unrelated study  published last month, researchers at Jefferson used maraviroc to prevent  highly aggressive breast cancer cells from being
trafficked – in this case,  metastasizing – to other organs in mice, where they can kill.
Marcel Van  den Brink, the head of hematological oncology at Memorial Sloan-Kettering  Cancer Center in New York, noted that the concept of “blocking
trafficking”  has been pursued since the 1990s but this is the first trial that appears to  have had success.
For solid organs, “I think it is possible,” he said,  “maybe for the same organs that showed [positive results] here, such as the  gut and liver.”
Daniel Weisdorf, director of the adult bone marrow  transplantation program at the University of Minnesota Medical Center, said  research still needed
to prove that it was the trafficking mechanism rather  than something else that caused what he termed “very interesting and  promising” findings for
bone marrow transplants.
“If there is directed  signaling that tells lymphocytes to go to a kidney and attack a transplanted  kidney,” he said, then something like this “might work really  well.”

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My stomach was very queasy today which made lunch a struggle, plus my sinuses were blocked so I felt sluggish all day.

We visited the Bacolod Football Stadium and the Talisay Ruins in the morning. Negros has a higher concentration of football players than other islands due to the Spanish settlers. The Ruins are the remains of a large mansion. The marketing slogan “The Taj Mahal of the Philippines” shows a profound ignorance of the scale and purpose of the Taj Mahal and a capacity for hyperbole that beats everything I have seen in this telenovela of a country.

After lunch we went back to Silay to visit the Banay Negrense, the third of the old houses open to the public. It is slightly different from the others and was built by Yves Gaston, the Frenchman who founded the sugar industry on which Negros’ wealth was built.

Then to the airport and an uneventful, but delayed, flight back to Manila.

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