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
Friday, January 8, 2016
Rux.......a....something
Okay so we have more information. If you remember I have been initially cleared to get a new drug Rux...a...something. I now have more information about the whole deal.
First it's not a trial it's a program to get the drug on compassionate grounds as its not on the Pharmacutetical benefits scheme (PBS). Bluey thinks my spelling is 'cute'. Anyway I'm in line to get this but Doc Shoozenbootzen is away in Canada skiing so the great Doc that was my registrar during Translant was the sub today and he filled us in but doesn't know if we got approved.
The drug works on one of the later pathways in the progress of my disease. It doesn't cure me but will give immediate relief from lots of symptoms. Unfortunately it does reduce red cell production which is an issue for me. I'm on a drug to boost red cell and I'm holding my own with that drug so may not have to have too many transfusions but it's a possibility. The SUBDoc gave us lots of good inf about my cells and the pathways etc so we feel very well informed now.
I remember tha Doc Shoozenbootzen said the new drug may even help my kidneys as well so that would be a great side benefit.
More later
Chris
First it's not a trial it's a program to get the drug on compassionate grounds as its not on the Pharmacutetical benefits scheme (PBS). Bluey thinks my spelling is 'cute'. Anyway I'm in line to get this but Doc Shoozenbootzen is away in Canada skiing so the great Doc that was my registrar during Translant was the sub today and he filled us in but doesn't know if we got approved.
The drug works on one of the later pathways in the progress of my disease. It doesn't cure me but will give immediate relief from lots of symptoms. Unfortunately it does reduce red cell production which is an issue for me. I'm on a drug to boost red cell and I'm holding my own with that drug so may not have to have too many transfusions but it's a possibility. The SUBDoc gave us lots of good inf about my cells and the pathways etc so we feel very well informed now.
I remember tha Doc Shoozenbootzen said the new drug may even help my kidneys as well so that would be a great side benefit.
More later
Chris
Tuesday, December 22, 2015
Maybe some good news
Actually there is good news and then maybe better news.
The good news is the Aranesp seems to be working as I had a red count of 116 which is only 4 points off normal.
The bone Marrow aspiration went well. I had primed the nurse to be ready to get the dazzle in fast and I'm glad I did because she seemed a bit surprised at how fast Doc Shoozenbootzen moved she had this look on her face as she's scrabbling to get her gloves on and get the singe into the line. I just said "I Told you" and laughed. Felt the needle to deaden the skin but nothing after that and It didn't even hurt when I woke up.
We got the results last Thursday and the Doc says I meet the minimum requirements for the trial. This is of course good cause we go on to apply for the trial now. But it means that I sick enough to meet the terms. Oh well. Not there yet as he has to apply and he has to talk it over with my Kidney Doctor as there are implications to my kidneys using this new drug VUXSOMETHING.
So we are up for a great Christmas season.
More later
Merry Christmas
Chris
The good news is the Aranesp seems to be working as I had a red count of 116 which is only 4 points off normal.
The bone Marrow aspiration went well. I had primed the nurse to be ready to get the dazzle in fast and I'm glad I did because she seemed a bit surprised at how fast Doc Shoozenbootzen moved she had this look on her face as she's scrabbling to get her gloves on and get the singe into the line. I just said "I Told you" and laughed. Felt the needle to deaden the skin but nothing after that and It didn't even hurt when I woke up.
We got the results last Thursday and the Doc says I meet the minimum requirements for the trial. This is of course good cause we go on to apply for the trial now. But it means that I sick enough to meet the terms. Oh well. Not there yet as he has to apply and he has to talk it over with my Kidney Doctor as there are implications to my kidneys using this new drug VUXSOMETHING.
So we are up for a great Christmas season.
More later
Merry Christmas
Chris
Friday, November 13, 2015
okay okay okay heres the update
So just coming home from Brissy. Did the 4 weekly trip for treatment and its all goodish. I'm half crap but stable. I did a pot of pee two weeks ago and the results are in. The protein my kidneys are leakng out has significantly reduced but its still too high, but its plateaued! My reds were at 107 which is good for me but more importantly its not down from last time so that means the Aransp is working at keeping my reds up. So thats all encourageing but to top it off he started telling me about a new drug that normally they would use it on my MyleoFibrosis except when the spleen is out (like me) except when the Myleo fibrosis is prominent (like maybe me)! So, with me so far?
So for those of you playing along at home...guess how we find out if I get to have the new drug...?
Yep im booked for yet another bone marrow aspiration (BMA). Remember how much I love this procedure? Its esentially a 1/4 inch core sample of my hip bone. Two times ago Doc Shoozenbootzen hurt his shoulder because my hip bone is so scarred up! We have since been doing a flip on the bed so he can work on my left hip.
Its all good because of Madasapamine (sedation)(Dazzle)! The Doc and I have a Deal ... He can hurt me as much as he wants, as long I'm not there!
So thats my life, How, you doin?
More later
Chris
So for those of you playing along at home...guess how we find out if I get to have the new drug...?
Yep im booked for yet another bone marrow aspiration (BMA). Remember how much I love this procedure? Its esentially a 1/4 inch core sample of my hip bone. Two times ago Doc Shoozenbootzen hurt his shoulder because my hip bone is so scarred up! We have since been doing a flip on the bed so he can work on my left hip.
Its all good because of Madasapamine (sedation)(Dazzle)! The Doc and I have a Deal ... He can hurt me as much as he wants, as long I'm not there!
So thats my life, How, you doin?
More later
Chris
Friday, August 28, 2015
Oh well
So we are down for my 4 weekly Intragamm treatment and my red cell count is down to 86. Thats well lower then last time at 92 and below the magic threshold of 90 So I'm now cooling my heels waiting for a bag of blood.
This is more than a little dissapointing since my reds are down because of the treatment for my kidneys and not any fault of my own. In fact I'm getting a twice weekly injection of IPO to promote red cell production. So the downward agent is working and the upward agent is not.....yet!
Because my blood is part mine and part my brothers it takes a lot of time for them to crossmatch the blood and then it comes across town and then it takes and hour and half to decant it into me.
Makes a long time in the chair. To add insult to injury I'm still on a saline flush to keep the vein open so trips to the toilet are increasing.
As my young acquaintance Coen Ashton says "better 5'6'' above then 6' under".
more later
Chris
This is more than a little dissapointing since my reds are down because of the treatment for my kidneys and not any fault of my own. In fact I'm getting a twice weekly injection of IPO to promote red cell production. So the downward agent is working and the upward agent is not.....yet!
Because my blood is part mine and part my brothers it takes a lot of time for them to crossmatch the blood and then it comes across town and then it takes and hour and half to decant it into me.
Makes a long time in the chair. To add insult to injury I'm still on a saline flush to keep the vein open so trips to the toilet are increasing.
As my young acquaintance Coen Ashton says "better 5'6'' above then 6' under".
more later
Chris
Monday, August 3, 2015
Camperdown capers
Bluey is at the Brain Institute at U of Sydney. Lets just avoid my potentional hurt by refraining from further jokes. Feel free to make up your own in your head now.
I'm at loose ends in a 'lovely' coffee shop beside a 'delightful' park. The people all around me a tapping away on their various laptops/tablets etc. so I'm right at home here.
So last week, dear reader, I went to see the PA Hospital Renal clinic for a second opinion really. The docs talked about a new treatment with a heaver duty immunosuppressant. but its not to be taken lightly and not if Doc Shoozenbootzen objects. but in the end they said the current Immunospressant was doing some good and in fact should be allowed longer to work. It does have the side effect of lowering my red cell count. Talked to the big Boffin after the PA and he agreed and we are marching on with me being half crap but stable.
Did pickup a bit of new info on the big picture. My kidneys are functions at 35 to 45 percent capacity but the average renal patient does get dialyisis until they are at 5%. so thats good.
Saw Doc Shoozenbootzen at the end of the week for my regular top up with Intragamm. He's put me on Aranesp to boost my red counts and then we will just cruise along I think.
On related note, two separate but connected things happened. An old friend connected me to a teacher friend so that I could go to her class to talk about being a recepient of blood products. The class is doing a unit on Service to the communtiy and has decided as a group to donate blood so I just gave a face to where it goes.
And the local Red Cross called up to get me to speak as a fill in at their annual donor thank-you event. I was going to be in Sydney with Blluey so couldn't but as we have a few of us recepients in Our Little Group, I got a young 19 year guy to speak instead. They were pretty thankful we got it sorted for them at the last minute.
I'm alway happy to talk about 'my story' to anyone who listens. It's a service I can give that may providse some knowledge or understanding. Its a little thing to give back for all the support the hospitals, clinics, blood service, Docs etc. have given me. I've even been know to sit in a cafe 'talking' to the ether!
more later
Chris
I'm at loose ends in a 'lovely' coffee shop beside a 'delightful' park. The people all around me a tapping away on their various laptops/tablets etc. so I'm right at home here.
So last week, dear reader, I went to see the PA Hospital Renal clinic for a second opinion really. The docs talked about a new treatment with a heaver duty immunosuppressant. but its not to be taken lightly and not if Doc Shoozenbootzen objects. but in the end they said the current Immunospressant was doing some good and in fact should be allowed longer to work. It does have the side effect of lowering my red cell count. Talked to the big Boffin after the PA and he agreed and we are marching on with me being half crap but stable.
Did pickup a bit of new info on the big picture. My kidneys are functions at 35 to 45 percent capacity but the average renal patient does get dialyisis until they are at 5%. so thats good.
Saw Doc Shoozenbootzen at the end of the week for my regular top up with Intragamm. He's put me on Aranesp to boost my red counts and then we will just cruise along I think.
On related note, two separate but connected things happened. An old friend connected me to a teacher friend so that I could go to her class to talk about being a recepient of blood products. The class is doing a unit on Service to the communtiy and has decided as a group to donate blood so I just gave a face to where it goes.
And the local Red Cross called up to get me to speak as a fill in at their annual donor thank-you event. I was going to be in Sydney with Blluey so couldn't but as we have a few of us recepients in Our Little Group, I got a young 19 year guy to speak instead. They were pretty thankful we got it sorted for them at the last minute.
I'm alway happy to talk about 'my story' to anyone who listens. It's a service I can give that may providse some knowledge or understanding. Its a little thing to give back for all the support the hospitals, clinics, blood service, Docs etc. have given me. I've even been know to sit in a cafe 'talking' to the ether!
more later
Chris
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