I'm with bluey in Brissy and this time it's for her!
Shes' at a meeting and I'm hanging our in a Uni Coffee shop. It's very weird to be here. I've been out of this environment for 40 years. I've been in the TAFE system and the state school system lots in the last few years but it nice to be at a university. Even though it's nothing more than a bunch of building and a coffee shop, it's the conversations around me that are great.
Anyway I'm here to report that the new drug has made a difference! I don't have to put body lotion on every day, my fingers and toes have stopped itching, And I'm not so hot when I sleep. Now let's see if I need to get transfusions more often (bad side effect).
More later
Chris
Tuesday, April 12, 2016
Thursday, April 7, 2016
I'm so slack! My apologies.
I outright lied to a good friend when I told her I was going to update my blog "that afternoon" this was a few weeks ago so here's my late late news.
It's more of the same but then again it's not.
More of the same waiting and trying new things and waiting and seeing if there is a change or not and then saying " well it's going okay".
Here's the detailed synoptic.
The red count is still down and bit from normal at 112 but up from the occasional low of high nineties. I'm making enough reds to get along just fine thanks.
Whites all good
Neutrifils just wonderful thanks
Platelettes. High but that consistent with not having a spleen any more (see previous spleen discussions if you want to know the myster of the missing spleen)
I'm still getting Intragam (immune booster) on my regular 4 weekly trips to the doc in Brissy.
The biggest new news is that I have started the new drug. Jakavi. It's just out on the market and it's just come onto the PBS system to reduce the cost. Bluey did her usual due diligence on the net to find out about this little beauty and found that it costs 120,000 for a month I pay 35.00.
It is supposed to help me with my "constitutional issues", that is, it won't cure me but it will help with my quality of life issues. They are little things that others won't notice but make me uncomfortable sometimes. Itchy feet, itchy hands, night sweats, occasional joint pain etc. I've only been on it a week and as advertised it has started working already!!!!
I've noticed way less itching already. And there's some thing unexpected.
I generally have a sense that I feel better.
It's nothing I can put a finger on so maybe it's just phychosomatic, but there is a decidely larger amount of energy and I felt like I might have been on steroids again. I've got to ask the doc if there is a mimic of steroids effect involved.
So My kidneys are still half crap and my bone marrow is still half crap but I feel great! No problems.....
Other shoe: the major side effect reported on this new drug is a drop in Red cells. so my next appointment is booked for two days in case I need a transfusion. And if I start getting them on regular basis I will need to think about travel plans an overload of Iron in my blood.
So take one step forward and then balance on your foot and wait and see if you have to take a half step back!
More later Chris
It's more of the same but then again it's not.
More of the same waiting and trying new things and waiting and seeing if there is a change or not and then saying " well it's going okay".
Here's the detailed synoptic.
The red count is still down and bit from normal at 112 but up from the occasional low of high nineties. I'm making enough reds to get along just fine thanks.
Whites all good
Neutrifils just wonderful thanks
Platelettes. High but that consistent with not having a spleen any more (see previous spleen discussions if you want to know the myster of the missing spleen)
I'm still getting Intragam (immune booster) on my regular 4 weekly trips to the doc in Brissy.
The biggest new news is that I have started the new drug. Jakavi. It's just out on the market and it's just come onto the PBS system to reduce the cost. Bluey did her usual due diligence on the net to find out about this little beauty and found that it costs 120,000 for a month I pay 35.00.
It is supposed to help me with my "constitutional issues", that is, it won't cure me but it will help with my quality of life issues. They are little things that others won't notice but make me uncomfortable sometimes. Itchy feet, itchy hands, night sweats, occasional joint pain etc. I've only been on it a week and as advertised it has started working already!!!!
I've noticed way less itching already. And there's some thing unexpected.
I generally have a sense that I feel better.
It's nothing I can put a finger on so maybe it's just phychosomatic, but there is a decidely larger amount of energy and I felt like I might have been on steroids again. I've got to ask the doc if there is a mimic of steroids effect involved.
So My kidneys are still half crap and my bone marrow is still half crap but I feel great! No problems.....
Other shoe: the major side effect reported on this new drug is a drop in Red cells. so my next appointment is booked for two days in case I need a transfusion. And if I start getting them on regular basis I will need to think about travel plans an overload of Iron in my blood.
So take one step forward and then balance on your foot and wait and see if you have to take a half step back!
More later Chris
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