My parents and I met with my consultant on Friday and while there was no terrible news, it still seemed like a pretty devastating meeting. I hadn't had any proper sleep for days so to be fair any bad news would have seemed a hell of a lot worse than it really was. I suppose the news wasn't really even that bad, of the three test results from the bone marrow test one of them came back positive. This means that I'm going to be stepped up to a slightly more intensive chemotherapy regime, which is a bit gutting but looking at the regime I would have been on anyway it doesn't really seem all that different, I would have to be in every day for both of them anyway, one of them just lasts longer.
The other thing is that its now been recommended that I go for the bone marrow transplant, I've got a meeting going in to more of the details of it on wednesday. They say there's a very good chance of finding me a suitable donor since I'm such a common type, so that doesn't sound like much of a worry. The upshot of it as well, by the sounds of it, is that its a much faster route to overall cure. My consultant basically said theres a choice between having the transplant in a few months time or having several years of chemo and radiotherapy, it sounds like they've consulted loads of specialists about it, including some leading expert in America and they all concur that a transplant is the best way to go. I suppose none of this sounds all that bad but when she started reeling off this list of possible complications, side effects and survival rates.. it was pretty tough to listen to on so little sleep.
Anyway it's all sort of settling in now.
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Ended up heading in to hospital last night, had a pretty bad headache I just couldn't shift with the painkillers I had, feeling alright now though. Saves me driving in for today's chemo at least! Starting my new regime today, 4 and a half hours of Cyclophosphamide, IT Methotrexate and an hour of ambisone... so it's going to be a long day but at least I've got a bed. Doctor's have just been round, they don't think a scan or anything is in order, the headache still there though its nowhere near as painful as it was. I'm a little confused as to what's caused it, since I haven't had any chemo for days.
FormerMember
Hi Will, good to hear from you, and actually I was pleased to hear that your parents and you have sat and had a chat with your consultant. If it helps I actually do not thnk that your update contains any real new news, everything is pretty much as you had previously stated, with the exception that a BMT is definitely the preferred option in the eyes of the medical team. Please remember that the Consultants always have to reel off stats, metrics, complication etc. - and these are often Global and across all age groups and 'types'. You sit is a much preferred park with youth on your side, and being 'a common type' carries even more weight. I reckon your glass is easily half full and much much more! fingers crossed for your meeing on Wednesday.
Headache, are you drinkiing loads - and I mean water etc! It is really important to drink when you have chemo to keep the kidneys flushing the toxins out as efficiently as possible. Yes it means more trips to the loo, but at least you can sleep without a thumping headache ... worth a thought.
Meanwhile, all the best today with your chemo and make good use of the bed and have 40 winks when you can
Hi Will, sorry you not feeling too good with your head. Your meeting with the consultant sounded like good news to me. You are a young chap and i am sure they are trying the most tested and positive route for you to follow. Good luck with it all. You will be fine. Love Kathryn xx
