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Posted: 25 Oct 2011 14:21
I'm not sure if I am posting this in the correct place.
I had a meeting with the Transplant team recently and have been informed that I have a good donor match, yippee - just what I wanted.
I then had a meeting with my Professor about a week later and I have been offered a treatment called ATG. It would initially make me very poorly but if successful could lead to circa 2 years of normal blood counts, it could then be repeated.
My main concern is that I could react to this treatment in a way that would lead to complications for my transplant.
I dont have to make any decisions yet, but something inside me says to go straight for a transplant.
I cant find much info about ATG or find anyone who has had it. I would appreciate any feedback on this treatment that you may have.
Posted: 25 Oct 2011 17:05
Good you have match
ATG i know nothing of it but 2 years of normal counts sounds amazing
so many risks with all treatments
i think as we all post when we do not know contact Sophie she is i believe your first port of call she will be able to help i am sure
Good luck with your choices
Posted: 26 Oct 2011 10:48
You have quite a dilemma and, at the moment, I understand this only too well - I am in a similar situation but more of this another time.
So pleased you have two matches for a transplant. Amazing all the way from America and Germany. I too no nothing of the alternative you are being offered and I think to contact Sophie is extremely good advice. You may well have done so by now. Where would we be without this support site and, indeed, without the internet.
I can empathise with you on not wishing to rush into anything while you are still feeling fairly well. Never an easy decision knowing that it may well be so important to get it right.
I wish you well Jayne. Will be thinking of you.
My best wishes,
Posted: 26 Oct 2011 12:11
Thank you both for your replies, it is nice to get replies to our messages, isn't it?
I actually feel a bit rubbish this week. But it is my 'funny' time (sorry any blokes reading this!!) and I really dont think it helps me. I do think the time is approaching for some medical help, however my husband says to wait a week or so and see if I 'pick up'. I really, really want to be well for Christmas. When I was diagnosed in February I set myself the goal of having a good holiday in May, a good summer holiday and a good 'family' Christmas. I am so close to achieving this but do seem to be running out of steam on the approach....a bit like a train on a train track, the platform is my Christmas but will I reach it. I know I will reach it but I want to be happy, bubbly and with enough energy to 'do it' properly.
It is a beautiful day here in North Yorkshire. I have booked Friday off as a holiday, the forecast is good so I might see if we can have a day out in Filey - a walk along the sea front and some fish and chips...yum yum! I just hope my body agrees by the time we get to Friday
I used to like going to Robin Hoods Bay but I dont think I would make it back up the hill anymore!!
Hope you are all having a healthy, enjoyable week!
Posted: 26 Oct 2011 13:10
Am replying here to your "slipped-in" info under Maggie's topic about the matched donors which have been found for you ( hooray!!) and meeting with the transplant team and your dilemmas regarding timing of a transplant going ahead. Now it seems you have a new dilemma especially regarding this proposed ATG treatment and how it might affect your chances with a stem cell transplant on the future.
There is some information about this in the booklet "101 Q & A about MDS" which I hope you have already received from Sophie? She will certainly know the latest research but, again, discussion with your Prof would be the best way to weigh up pros and cons as I understand it is not an easy treatment. Quite easy to look up the possible side effects. I would think that there would need to be indications that your MDS is caused by an "auto-immune" attack on the bone marrow cells. Have you been told that this is the case or have you had tests which show that you have factors which might predict a good response to this kind of treatment? I received an alert recently about this very topic on some research into the success rates of Rabbit vs Horse ATG on treating patients with Aplastic Anaemia and the outcome was that the horse ATG was more successful by a long chalk. Here's the link.
http://www.aamds.org/news-article/new-s ... -severe-ap
However, even in the face of this research I am not sure whether Horse ATG is available in the NHS in the UK or widely used as a matter of course. Perhaps Sophie would also know this?
There is some personal experience (not good!!) of ATG use on this Forum posted by Sophie on behalf of an MDS Patient under My Experiences: "Transplant experience and blog, posted: Wed Dec 01, 2010 .
These are difficult decisions to make. I wondered if there were other factors in your diagnosis which has made treatment options so imperative as, from what you have written previously, your haemoglobin, though low is not affecting you to the point whereby you need transfusions and your platelet count, though falling, is still high as compared with others and not giving you any problems at the moment? (I think over 80 and you could still withstand a major operation!) Your white cells are fine? Can I ask if your cytogenetics were unusual? Have you managed to fix your Flash Player as I'm sure you would find those webinars helpful to you - re both the treatment option and the transplant timing? We would all have different approaches so good luck with weighing it all up.
Hope you feel better as your funny week recedes!!!It's certainly not helpful in the haemoglobin stakes so I think your husband is right - wait and see!! A blow along the seafront should help!!
Think of me. I spent yesterday shovelling horse manure - 2 huge Volvo estate carloads for the allotment. This is the saddo's highlight of the year - getting the allotment "put to bed" for the winter!!! Feel so lucky that my red cells are OK as I didn't feel at all affected!! I think my muscles are completely attuned to digging actions after the past couple of months on the new plot!!
Hope you are feeling better soon.
Posted: 26 Oct 2011 14:13
Mmmm, it is all food for thought. I have read and printed off the article and have just read Gill's post. The last post was Dec 2010. Do you know if she is still ok? It seems that we may have similar symptoms. I have also read the 101 questions and answers.
Yes I have been told that they believe my immune system is attacking my bone marrow. The whole point of the Stem Cell Transplant would be to give me a new immune system.
If I have ATG it would be rabbit.
I firmly believe that I will survive a transplant (I dont know why but I do and it is much better to be positive). Therefore to do anything that could jeapordise my chances, especially as I have a good match, doesn't seem to me to be a possibility.
But then, I think, if the ATG works and doesn't damage my organs then I could have a good couple of years before I have my transplant. Basically I turn myself round in circles. So I have decided as the time is not now to decide, I wont! And maybe when the time is right then the option to take will be clear.
Oh and my neutraphils are also on the decline, they were 3.97 in April and are now 1.89. Platelets are steady around 100 and Hb is 8.0. My cytogenetics were fine. I have graphs with trend lines and unfortunately the trend lines dont look good. I've only just started taking an intereste in my white cells/neutraphils but I know they are being monitored by my Prof at St James.
It is good that your version of MDS is not affecting your ability to work on your allotment, you're not a 'saddo'!!!. I think as our illness progresses we become much happier with 'smaller' events!
My flash player works, I cant remember why I didnt get on the webinar (my memory is shocking!) but I have just checked and the one I wanted to watch is on the site now. Thank you for reminding me to take a look!!
Posted: 26 Oct 2011 16:26
The decisions are certainly hard and you might need to note down some questions for your Prof about the ATG and its effects on both you and how it might affect the stem cell outcome.
Might it be worth doing a private Message to Gill? She was also in a "St James" hospital (she also mentioned Airedale - Lancs?) so am I right in thinking that might also be your one? That could be a really useful contact.
Not being rabbit-ist, but really annoying to think that despite this research, you will still only have the option of what might be a less promising treatment! Any clinical trials anywhere where you could have access to Horse ATG? And the other question is if/why did they stop using Horse ATG here?
Sorry to hear your neuts are also low and dropping. Mine have been around 0.6 for ages though thankfully not too many issues.
Perhaps it was somebody else with a flash player issue!! I hope the webinars will help you in the decision-making process. There are quite a few and the questions and answers afterwards cover similar queries to your own I think. I know you are a busy person so it will be hard to set aside the time to listen but I think it will help.
All the best