All of yesterday and the majority of today was pretty relaxing, had friends and family come to visit, a few drips, injections and blood tests but nothing really major.
Today however they wanted to get my chest echo, my intramuscular injection and another intrathecal injection done.
My programme does outline only three intrathecal's (that's the ones straight in to the fluid that surrounds the spine and the brain) but seeing as that fluid came back positive for leukaemia before now, I'm going to be having them weekly until its clear again. I didn't mind this initially, seeing as the original intrathecal didn't really hurt, but today was a bit of an ordeal.
Again I was a few platelets short so I had to have another tranfusion and seeing as I'd had them all before I wasn't concerned at all. So this Paediatrician came in to talk to me about the study that I'd joined, so that my case can be profiled against other similar cases and my care can be better tailored to my progress and I can try and get through it with as few side-effects as possible. I was trying to concentrate on what she was saying but I started itching... a lot... everywhere...and I mean, EVERYWHERE. To start with it was just annoying but I soon got pretty concerned when the rash broke up all over my face and my chest started to feel tight.
I called the nurse they did a test on my heart, which was fine, put me on some oxygen and saline and gave me hydrocortisone and piriton.
I was shaking and finding it a little hard to breathe... to be honest it was a pretty big reminder that this treatment isn't just going to be a lot of little injections and lying around in bed waiting for things to work, some of this stuff's going to be bad. Having said that though, they said the reaction to the platelets is fairly common (infact a haemotologist even came in to explain it to me), they don't match platelets to your blood type since apparently it makes no difference. They think the bad reaction is just something to do with different proteins and that. Still it shouldn't happen again, I'll be given the hydrocortisone and piriton before each platelet transfusion from now on so should be fine.
But yeah, after that I had the intrathecal injection... I said I wasn't worried seeing as the last one was fine. This one.. was.. painful. Sorry if anybody is about to have one, but this time the Doctor had a real hard time getting the needle where it needed to go, I got some shooting pains down my right leg, one of them made me shout out but thinking about it probably wasn't any worse than being kicked. It's just a very different kind of pain when it's inside you!
Still it made me sleepy and after a bit of a nap I'm feeling fine enough to blog it all...
FormerMember
Hi Will. Get used to the intrathecals. I had to have 10 all up and that was just for precaution as no leukaemia cells were found in my spine. What chemo are they giving you? I don't want to scare you but if it's anything like mine you're going to get pretty sick. The results are worth it though. I had to stay in hospital for 7 weeks at a time with the chemo regime I was on(Hyper CVAD) because of the frequency of the treatments. Good luck and let me know how you get on. Craig.
Cheers for the reply, yeah they found leukaemia cells in my spine the first time but that second time they didn't find any so hopefully after the next one I should just be going down to the standard precautionary intrathecal's like you had.
I'm on a kids regime apparently, I'm not entirely sure what it's called, I've got my induction regime infront of me and it just says Regimen B. I'm on Asparaginase, vincristine, dexamethasone and the intrathecal's. I'm responding well so far, I'm neutropenic already can't believe how quick it happens.
They're hoping I'm going to be an outpatient by next week, but yeah.. I'm trying to stay very aware of the fact that this is gonna be really tough...
Hi Will. It might be a good sign they've put you on the kids regime as younger people seem to have a better prognosis with ALL. Luckily it dosen't sound like you have too many complications. Have they given you a list of foods to stay away from when you're neutropenic? Very important really. I was actually neutropenic even before I was diagnosed and my platelets were only 8 (normal is 160-400) which is not real good when you're working with steel all the time. I thought I had a flu and didn't bother to go to the doctor until I got really bad mouth ulcers. He took one look at me and said "You've got leukaemia. Go straight to the hospital". Next day I was in the Royal Brisbane Hospital starting on chemo. The doctors told me(at my request) the odds of survival with the Philidelphia chromosome and my age(35 at the time) were only about 15% to make 5yrs. You should have a lot better odds than that. I had to have Glivic to fix the PH+ thing before I could go into remission. A doctor told me it costs about the same for Glivic as it does for a new Mercedes Benz in this country. Luckilly everything is covered under our system. I'm now nearing 9mths post transplant (hopefully you wont need one of those) and over most of my Graft Vs Host issues and feeling pretty good. Everything seems to progress pretty quickly which you may not believe at this point in time. Keep up a good fight and you'll beat this thing. Craig
Wow, proper manual labour with a platelet count like that... just wow... can't believe you managed it.
Yeah they've given me the list of food to stay away from, there's nothing too shocking... pretty gutted with the last one on the list "No takeaways or restaurants..." but realistically how can you regulate how clean/healthy something is unless you or somebody close to you makes it... so it's fair enough I suppose. Though I am kinda hoping that is something I might be able to negotiate even the slightest!
From what my Doctor's told me, a bone marrow transplant is likely to be something I have to eventually deal with, but we'll see. Responding well so far, caught it very early.
Yeah everything here is covered by our National Health Service, something I am VERY happy about... our health service gets a bad rap but they've been amazing so far, so much advice and information... even when I had a had reaction to some platelets a guy from haematology came straight down to give me an in-depth explanation of exactly what happened...
I'd appreciate any insights in to chemo you could give me mate, specifically side effects... from what I've researched it does seem to effect people different but am I right in thinking its mainly sickness, nausea? Pretty debilitating no doubt?... that's gonna be an odd mix with these steroids I'm on... chemo making me throw up, steroids making me just want to eat more and more.
Anyway mate thank you very much for the support, really appreciate the information and I wish you all the best.
Hi Will. The steroid thing isn't too bad with the chemo. You just have to watch your blood sugar levels while your on the Dex. The chemo might not be so bad for you as it was for me cause I was allergic to most of the anti-nausea drugs. The radiation they gave me was a bit nasty (full body) but you will only have to have that if you go down the transplant road. I don't think they can use your own stem cells with ALL (not sure) but if they can you don't have radiation. I'm probably making it sound worse than it really is but remember the results are worth the discomfort you have to endure. As for the food thing, just be sensible about it and make sure things are kept in the propper heat ranges. They told me to stay away from salads. Best not to bend the rules too much but if you do make sure it's prepared in a clean place and maybe microwave it. Stay away from sick people and go straight to the hospital if your temp goes over 38c. If you follow the basic rules it'll keep you out of hospital longer. Hope everything's going well for you. Craig
