Making the Decision

[The Process] [The Input Factors] [Timing] [Blood Counts]
[Emotional Issues] [Donor] [Input from other people] [Sense of a positive Future]

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The Process

There is no simple or easy process for deciding if and when to undertake a bone marrow transplant for myelofibrosis. Each person’s situation is different and no one can predict precisely the progress of their disease or what the outcome of the BMT will be for them. As this process is so difficult I have described in some detail how I went about making this decision.

First I wanted to collect as much factual information as possible. I looked on the Internet, went to the public library and the Anti Cancer Council. I contacted a person I knew who is a specialist in dealing with people with life threatening diseases. I looked for journals, which might have specialist information. I sent emails to places listed on the net that might be able to help. This was mostly in hospitals. I just sent an email saying I was researching the use of bone marrow transplants for myelofibrosis, then a list of questions. I phoned places directly if I thought they had information. I had a long and very helpful conversation with Dr Jeanne Anderson when she was at the Hutchinson Centre.

I started with some basic questions and then modified them as I developed more information. I kept the list of questions on a piece of paper near the phone so if I got a call back I am ready to go.

I kept a record of what I have asked of whom and what response I got so I could follow up any gaps that might be important.

For anyone who was helpful I asked them who else I should talk to.

I make a point of giving feedback to people who have been helpful. For example I just phoned the search co-ordinator at Wellington Hospital who has done many HLA tests over the last three years and told him which donor had been chosen and when the transplant will be.

As I collect information I put it into a folder with category headings.

Once I have a good amount of information and am starting to get repeat material rather than anything new I write it up, almost like a business proposal, and then wait.

 

I like to let the factual material percolate, reading it over, not making a decision. This allows the emotional aspects to emerge. If possible I like to articulate these factors also.

If I have a whiteboard nearby I put all the points up on the board so I actually see it during the day. This also acts as a prompt when anyone visits the office that may be able to add insight or information.

I also keep a summary of the key points near the phone so if I am talking to close friends I can raise the issues and obtain their input as well.

 

Then I trust my subconscious decision making mode to set in. I help it by reading over the material just before I go to sleep. I say to myself, I’d like to make a decision about this.

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The Input Factors

Essential reading: Allogeneic Stem Cell Transplantation for Agnogenic Myeloid Metaplasia: A European Group for Blood and Marrow transplantation, Societe Francaise de Greffe de Moelle, Gruppo Italiano per il Traplanto del Midollo Osseo, and Fred Hutchinson Cancer Research Center Collaborative Study

Published in Blood, Vol 83, No 9 (May 1) 1999 pp 2831 – 2838.

This study examines the outcomes of 55 transplants done between 1979 and 1997 and makes recommendations as to factors that are significant in determining outcome. The article is challenging reading but key factors that reduce risk are: haemoglobin greater than 100, platelets between 40,000 and 300,000, not dependent on red blood transfusions, no evidence of osteomyelosclerosis and no evidence of a cytogenic abnormality.

The article points out that the treatments offered which include hydrea; interferon, androgens or corticosteroids have not been shown to prolong survival.

With a transplant the estimated survival at 5 years is 47% plus or minus 8% and 54% for those with a fully matched donor.

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Timing

BMTs have better results with people under 50. Some hospitals set this as a limit but most accept up to age 55. The reality is that a person over 50 does not recover as well as one under 50. So each year over 50 increases the risk.

I was 49 at diagnosis so this factor became more important over time. Each year that I wait my body’s systems are older and the disease has had more of an impact.

BMTs have better results when done sooner after diagnosis than later. The longer the disease continues the more damage there is to underlying organs, the more tired and run down the person is.

Family issues impact on timing. My identical twin sons are teenagers and I was reluctant to put them through this process with its risks until they are well established in their university studies. I also chose to change my lifestyle so I could spend as much time as possible with them and chose to undertake a lot of travel and other leisure activities so we could build positive memories together.

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Blood counts

I have tracked my blood counts since diagnosis. When my haemoglobin dropped to 92 and platelets to 85,000 this acted as a signal for action. I created charts of key blood counts and plotted a progression line based on the best fit. These lines showed that within eighteen months my counts would indicate that I would be in poor shape.

In one of my conversations with Dr Jeanne Anderson she said they try to predict when a patient is two years from death. At this time the person is still in good enough condition to be likely to be able to manage the rigours of a transplant but close enough to death to be prepared to take the risk of the procedure. The blood counts act as a tool to give clues about the rate of progression of the disease.

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Emotional issues

I find the situation of simply waiting for the disease to progress and then to have palliative medication for the symptoms extremely difficult. In the rest of my life I am used to being very achievement and goal oriented. I feel that I have to “have a go” at this, to take the risk of the treatment failing in the hope of success and a cure. This is in contrast with the certainty of death in the short term if I do not have the transplant.

The only way I have any chance of the possibility of seeing my sons grow into adulthood is by undertaking a transplant.

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Donor

The availability of a family donor is a critical factor as the lowest risk is with a matched sibling. In my case this was not available as my brother had been recently killed in a work place accident (testing of his child indicated that he would have been a match) and extensive testing of my many first cousins seeking a match there did not turn up any matches either. So the donor register was searched and eventually two matches were found. However using a non related donor does increase the risk and so I did not progress the issue any further from this point.

Later, I transferred to another city and the new haematologist undertook a review of all the previous testing on potential donors. He found one cousin whose HLA result did not seem correct. Further checking with the hospital which had done the test found they had made an error and that he was in fact a 5/6 match. Our fathers were twins. Further testing found that his brother matched him 6/6 thereby providing a first reserve. Subsequently live testing was done and it was determined that he was as good a match for me as a sibling. This discovery is quite recent and has been a significant factor to me. Not only the loss of my brother, but also other stories I have heard about problems when a matching donor is suddenly not available due to a change in their circumstances created some sense of urgency for me.

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Input from other people

This is not a decision a doctor can make for you. The doctor can give you all the factors that influence the medical side of the decision. But only you can decide the time to choose to go from a reasonable, albeit restricted, life style before the disease has gone too far to undertake an extremely arduous and dangerous procedure which may accelerate your own death. But of course you do it in the hope that you will achieve a cure and a further ten or more years of productive life.

I have not found any of my friends or family can offer very much input into the decision, as this is not a situation that anyone not in it can really relate to.

It therefore can seem like a heavy burden, a tough responsibility. And in my case I hope that my sons will respect my effort to create a more positive future for all of us, even if my attempt fails.

 

I have been in contact with several people who have had successful BMTs for myelofibrosis. Each one has provided insights and a sense of the possible to offset the statistics.

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Sense of a positive future

One further aspect of the emotional side is that I have needed to build some mental pictures of myself in a healthy, productive future to help spur me into the decision.

For example, I have bought tickets to the Sydney Olympics in September 2000 and plan to be at the rowing to see the Oarsome Foursome win their third gold medal in the men’s coxless fours. (Go Mike, Drew, Nick and James!)

Sharyn Cederman and the Oarsome Foursome Rowing Team

From left: Drew Ginn, James Tomkins, Kerri Tepper, Nick Green, Sharyn Cederman and Mike McKay
(Click for a larger version)

To find out more about their progress, go to their web page at http://www.oarsomefoursome.com.au.

I have a book proposal with a major publisher (positive response so far but still a few steps to go through). I will write before during and after the transplant and plan to build a new career as a motivational speaker once I am cured and well again. I have ideas and a structure for another book to follow.

I have more gardens in England that I haven’t yet visited and some I want to see again; more ancestors to track down and another region of France that I want to explore.

I have a lot more learning to do about Buddhism and my spiritual journey. So much more living yet to do!

 

All of this material simmered in my conscious and subconscious mind for a long time. So when the haematologist asked me if I was ready to set a date I took a deep breath and almost to my own surprise out came the words: “how about the first week of November?” As soon as the words were said it felt right and I have had no regrets about deciding to do it and do it then. I still have fears and anxiety about the process and how I’ll cope with it all, but I feel strongly that I must do it now while I still have a reasonable level of fitness and strength and before the disease harms more of my system.

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