Interferon the First

Sounds like an emperor in the Stars Wars saga. While i had the first injection and I dare anyone to not be a little nervous the first time they inject themselves with something that has FEAR in the name! I guess I was more concerned about side effects then the jab. Bluey read up the entire pamphlet and was talking about practising on oranges but in the end just stuck it in me and there were a few bobbles but it was good in the end. Barely hurt going in slipped out fine and I had mild mild aches this morning and a bit of a headache. Nothing some water didn't fix. So that's great now on to seeing what happens after I take it three times a week. Blood test tomorrow and Skype call to the Doc on Friday.
Repeat each week for 7 more weeks.
Easy.

Well I can't help but think if there are no symptoms of Graft versus Host Disease (GVHD) then there is nothing kicking at the cancer cells. But after only one injection that's rubbish talk. Get over yourself you Git!
Easy.

More Later
Chris

What me worry?

This last appointment in Brisbane was a bit of a drag. First we got up at 3:30 left home at 4:15. I did all my intra gram then The nurse got Doc Shoozenbootzen in. He apologized for delay in starting interferon because the trial people led him to believe I was good for the trial. Just other people got in first. He then went on to do the BMA (butt stab) and that went well... I'm told. There was a moment when doc was prepping my back and the nurse was waiting to get his attention to answer the question about how much " dazzle" to give me, but he was telling a story to Bluey and our pal... But he was getting on with his prep and soon there would be pain! I grabbed her arm and said put it in! That stopped the story enough to get "give him half" . Then I told her that was good but I needed to relax as one time he had to tell me "Chris, Shutup and go to sleep". Doc says what? So I tell the story again.... There's a pause as he is remembering then he says " give it all to him" Sweeter words I have never heard! So I know nothing for sure but appaeartntly I was a laugh riot and many people came to visit. I get the results at the end on the week in a Sypke call. In the talk before I was stabbed he also told us a bunch of things. Interferon would be on PBS. I will start interferon Monday and do it three times a week. Flue symptoms , worst for first month We should do it for 8 weeks and if no change then go on to next treatment plan as it means that it is not working. He also told us that the current drop in red cells is either.. 1. Part of my immune system kicking the fibrosis clones and after they are kicked there is an aplastic phase where there is a vacuum and the cells are down. Then they get ramped up again. 2. The fibrosis has advanced to the place where the fibrosis is interfering in cell production. He thinks it's 2 We will know the interferon is working when two things happen. 1. the GVHD is unleashed with its various side effects, but it would attack fibrosis clones. 2. The interferon will attack the clones directly. If after 8 weeks we get no results then we stop the interferon and go on to either DLI or second transplant. This also means we have to decide that since we are bringing Rick then do we do just the DLI or go straight to BMT. They can harvest for both in the time trip DLI cells fist then transplant cells. But these are decision for later. Remember a few appointments ago I was by myself and I was trying to think about what Bluey would want to ask and he said " she would ask me should I worry" and he answered no " and two, Do you have a plan" and he said yes. Remember that? So we have justbheard allnthis stuff about missing red cells and interferon maybe not working and I'm a bit nervous about the BMA and then I ask, as a smart ass, "should Joyce worry?" He says Yes. Then starts to stab my butt.Hmmmm More later. Chris

Floating toward the deeper end of the pool

Had another video conference with the doctor, who had to drop his video because of the poor connection.... is it still called a video conference if only one party is visible?

I had further blood tests done early last week and the doc did not mention my liver/kidney results so that is good I guess. But my Haemoglobin was down to 80 (reminder that males are usually up around 125 to 140, can't give blood below 120, have to get blood below 90) anyway its a worry as to where my cells are going. Doc Shoozenbootzen says it could be the progression of my disease or could be because my immune system is kicking in. But he needs to know .... so now I'm also booked for for my regular intragam on Thursday along with another Bone Marrow Aspiration (BMA), some whole blood, and the start of my interferon. It may be a long day as the intragam takes about 1.5 to two hours, the blood is two hours per bag and the BMA about 1.5 to 2 hours.

------ remember this symbol means that there is stuff you can ignore following, but it may have good bits none the less. Bluey is my wife and is so named not because she has the blues, although that happens from time to time, but because she has the most beautiful red hair that science can create. Its an Australian thing. ------

Bluey is totally looking forward to this trip because of what was revealed in this half vid conference. The continuation of the interferon injections will be done AT HOME. Yep Bluey gets to jab me. I complained to the doctor that any infraction in the previous days would result in an unfortunate,  for me, choice of injection location!  He laughed so hard and then said " Yes I would imagine that a scrotum injection might be painful!"

I'm having to manage my own case more. I'm keeping track of what the doc says but I have to be talking to the receptionist Chills, the practise manager, Michael, the clinic booking officer, Scots Queen,
The staff at the pathology lab here etc. This is tip for anyone embarking on a program like this. YOU MUST BE THE MOST INFORMED AND PROACTIVE PERSON ON YOUR CASE. UNLESS YOU HAVE A BLUEY, then you can totally relax!

------I have always disguised the names of the medical practice people because I don't want there to be any issues about what I say about them or what I say they say.-----

Anyway at least I will be starting some treatment. It has been a bit of a worry for me (what, Me, Worry?) that we know my fibrosis is back back but we have not started any of the treatments. Interferon, DLI, Transplant. I tried to think of it as good news that the progression is so slow we don't need to rush but I'm starting to feel like I'm on this floating lie-low on the surface of a nice pool... but that pool is starting to tip down to the deep end and there is just the very slightest feeling, barely perceptible, of current flowing to the deep end.

So better hand me a margarita and lets see where this ride takes us!

more later.
Chris

the problems with compromised immune system

First off my immune system may very well be coming up to scratch as we speak but it's not all there yet. so..
I watch what I eat. don't want intestinal bugs to run rampant.
I watch what I breath, care in gardening etc.
I watch cuts and nicks
So imagine my concern when a bit of thin ply, that I use under the dogs pad in the back of my truck, slid through one hand and along the back the of my other hand causing an 1/8 inch thick sliver to be driven into my hand. I looked at it and thought "my that hurts more then usual and look at that angle, its pretty perpendicular to my skin". As I pulled it out a huge amount of blood pooled up and I thought " hmmm thats the colour of the blood that they take out of of my veins every month, Holy C**p I just stuck a sliver in a vein". So I grabbed a cloth a pressed down hard for a a few minutes. and its stopped bleeding.  All good right but then I spend a lot of time yesterday, last night and this morning watching for signs of fever, indicating infection. It still hurts like heck but no infection nearly 24 hours later, so might have dodged this one.  But now, even more than ever, bluely hangs on my actions wanting then to be super safe and I worry that she worries.  Oh well that's life. yep it IS.
more later
Chris

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