Quote:
Originally Posted by Neil Cuadra
Sandi (and Paul),
The shock you experienced on July 17 is indeed awful. For my family it was October 23. Like you, we got a "stop what you're doing" phone call from the doctor after a routine blood test. Many of us here in the forums had the same experience and have had it cemented in our memories ever since. That's my way of saying that you are not alone. MDS is rare so you won't find many MDS patients or MDS experts around you, but if you seek them out you'll find them. We have forum members with a variety of backgrounds, ages, and disease conditions, and you'll find other Aussies among us too.
Give both Paul's doctor and his haemotologist credit for knowing what they were dealing with and recognizing his bone marrow condition so quickly. We too were rushed into an immediate bone marrow biopsy and in hindsight we understand exactly why. They may have saved Paul's life with their fast work.
In most cases we don't know what causes MDS, just that it's present. Initially, the key is fast action to stabilize blood counts and get them up from the most dangerously low levels. What follows is even tougher and takes longer: finding a long-term treatment strategy, to work toward improvement, livable counts, and the ability to go back to a normal life. A bone marrow or stem cell transplant, when available, offers a chance for a real cure. Other treatments, while not cures, can still give you your life back.
There is no risk-free treatment approach and that's a hard thing to accept. Your lives have been changed and this probably won't be over soon. The key for many of us is educating ourselves: learning about this disease, learning what blood counts mean, learning the medical words you keep hearing, asking questions until we understand what the doctor recommends and why, and becoming partners in our care. That's what gives us strength and the ability to help ourselves. From reading your post I think that you've already learned a lot.
Has Paul gotten an IPSS score? From your description it sounds like his score is about 1.5 (low end of the Intermediate-2 risk category) but only the doctors can tell you for certain. I assume that his DNA findings are what led the doctor to recommend a transplant.
If you aren't clear why Paul doesn't fit any of the WHO categories, ask the doctor to explain. For example, why doesn't he fit the RCMD (Refractory Cytopenia with Multilineage Dysplasia) category? Keep in mind, however, that classifications are used for statistical purposes, e.g., to match patients to the treatments that have performed well for most patients like them, but cases of MDS can be as unique as the people involved. What's important is what's best for one person: Paul.
Paul's low blast count is a good sign. So was his good white count response. I hope you get good news back from English soon. There's a 43.75% chance that one or both of his siblings will match. If they don't, we'll cross our fingers for you too, as you look for a match in the international registry.
Two bits of personal advice:
1. Your family and friends probably share the shock and disbelief you feel. Let them know what's happening to you and Paul and let them support you and share this burden.
2. Keep Bali on your list for a future vacation. You're going to get there, just not as soon as you expected.
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Neil, thank you so much for your supportive and informative quick response. It is indeed enlightening to at last be talking with others who are in the same space. By all accounts, and perhaps we are lucky, life on the surface continues to go on as normal and we both continue to work and Pauls health appears to be good. However there is one big exception. We can no longer make plans beyond very short term - eg we will be on holidays in February 2013 etc. To some people this may seem a big whinge and for that I will apologise. With the initial diagnosis and subsequent 'honeymoon' period there is a certain amount of grieving for what life was expected to bring in retirement - however one simple phone call changes that all as you well know.
Paul's haemotologist advised that he sat in the lower side of high risk factor and that he had a higher than average chance of progression to AML and yes, this is based on the DNA findings. My understanding is that the deletion of chromosome 7 is an indication that progression will be at a reasonable rate. It seems that the only treatment options open for Paul is the growth hormones, transfusions if and when required or keeping our fingers crossed a BMT.
It is great that his neutrophil count has responded to the growth hormones taking it well into the middle of the normal range, because that improves the quality of life immensely.
And yes, I have been reading a lot, most of it giving me head spin. This in itself has caused me a lot of frustration as I have this Mrs Fixit streak in me and I am finding that this insidious disease is totally out of my hands and there is little I can do with the exception of being there and supporting Paul.
How often have you had bone marrow biopsies? We have been told that its not likely there will be another scheduled unless there is a match found and a BMT is to occur. Is this normal?
Thanks for your words of advice. Number one, we do try to keep family and friends in the loop and most of them, like us seem to be waiting for any information between the fortnightly visits. Number two, we are happy to cross Bali off the bucket list. We have been there a number of times as from Perth it is a cheap vacation to a tropical destination. On this occasion however it was a great disappointment because we were going there for a wedding where our daughter was bridesmaid - but, that was nothing over Pauls health.
Neil, thank you for your kind words. At this point it has been all about me and Paul. You must fill me in about yourself.
Kind regards
Sandi