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
Friday, November 13, 2015
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
Friday, July 3, 2015
hello?
Hi many of you...(assuming more then Bluey, Gayla and Ret reading this)
will remember that i sometimes report on my condition and kept you upto date with what's upwith me. But not so much lately..dont knowwhy
Here's the state of play:
summary : I'm half crap but stable so thats fine.
Detail: Myleo Prolific Neoplasm - 50 % crap stem cells 50% good still making my own blood cells but complicationd from treatment for Kidney disease have lately reduced red cell production. Down to 98 today but no blood transfusion booked.
Detail: Kidney diease; Kidneys leak protein into urine but contrary to usual patients my blood protein levels have not dropped significantly. Kidneys holding too much creatin but not so much that it affects other processes. Tried Interferon, didn't work, tried Pontecellei protocol (all those freaking steroids!) didn't work. Currently taking cellcept an imunesuppression drug. Started 8 weeks ago at half dose and upped to 3/4 dose 4 ramping up the dose and no idea what the results are today except can see red cells down so thats a non desirable side effect. Only at 3/4 of desireable dose of Cellcept so don't know whether I'll get dose upped today or held.
So sitting in the chair getting Intragamm and reflecting.
I have done this trip to the chair over a hundred Times! Around here we don't get cake for such an accomplishment ...we just get to do it again!
I've been active with the Leukamia foundation in fundraising and more recently helping to coordinte a self help group called Our Little Group. I continue to take cupcakes into the Red Cross donors as thanks. The Red cross PR guy in Hervey Bay wants me to talk to the state PR person about something so stay tuned. I got to reply in the paper, to a report about the mortality issues of blood cancer over breast and skin cancersin the Wide Bay (region I live in) and its a bit freaky! Bluey calls me a media tart.
The Leukaemia Foundation is trailing a new way to organise Light the Night in Queensland and thats to leave the organizing to a community committee so me and two others are it this year. We have the same budget but the decisions stop with us not Brisbane. I'm going after local sponsorship as it really means something now. more on that later.
more on everything later
will remember that i sometimes report on my condition and kept you upto date with what's upwith me. But not so much lately..dont knowwhy
Here's the state of play:
summary : I'm half crap but stable so thats fine.
Detail: Myleo Prolific Neoplasm - 50 % crap stem cells 50% good still making my own blood cells but complicationd from treatment for Kidney disease have lately reduced red cell production. Down to 98 today but no blood transfusion booked.
Detail: Kidney diease; Kidneys leak protein into urine but contrary to usual patients my blood protein levels have not dropped significantly. Kidneys holding too much creatin but not so much that it affects other processes. Tried Interferon, didn't work, tried Pontecellei protocol (all those freaking steroids!) didn't work. Currently taking cellcept an imunesuppression drug. Started 8 weeks ago at half dose and upped to 3/4 dose 4 ramping up the dose and no idea what the results are today except can see red cells down so thats a non desirable side effect. Only at 3/4 of desireable dose of Cellcept so don't know whether I'll get dose upped today or held.
So sitting in the chair getting Intragamm and reflecting.
I have done this trip to the chair over a hundred Times! Around here we don't get cake for such an accomplishment ...we just get to do it again!
I've been active with the Leukamia foundation in fundraising and more recently helping to coordinte a self help group called Our Little Group. I continue to take cupcakes into the Red Cross donors as thanks. The Red cross PR guy in Hervey Bay wants me to talk to the state PR person about something so stay tuned. I got to reply in the paper, to a report about the mortality issues of blood cancer over breast and skin cancersin the Wide Bay (region I live in) and its a bit freaky! Bluey calls me a media tart.
The Leukaemia Foundation is trailing a new way to organise Light the Night in Queensland and thats to leave the organizing to a community committee so me and two others are it this year. We have the same budget but the decisions stop with us not Brisbane. I'm going after local sponsorship as it really means something now. more on that later.
more on everything later
Tuesday, April 14, 2015
After the trip report
So we got back from Canada and the US on thursday and friday we drove down to Brissy for appointments. Well bluey drove as she is amazing and powerful and needs to drive.
Anyway I got topped up with intragamm and got some more info about my condition from the Substitute doc who was my resident when I was in hospital so it was nice to catch up. He gave me some info about Klones (cells that are identical, they shouldn't be but in my case 50% are.) and about the number of celss that are mine and that are the Super Bro's (again about 50% I believe) that makes me a Chimera (http://en.m.wikipedia.org/wiki/Chimera_(mythology)) and part of my condition is called Chimerism. Cool eh?
My counts were okay... reds up to 117 which is good for me.
On to see the Big Boffin and he wantd me to start a new treatment for the Kidneys which is, in fact, and old treatment I had for my bone marrow. A course of Cell Cept or MicroPhenolate (sp?). It was last used on me to bridge the getting off of my big Immune Suppression drugs to no Immune supression. It is a little immune supression drug (or that's how I see it, it could be just its a totally different pathway to suppression or the like ...who knows). Anyway its easily tolorated by me, at least it was three years ago, so I'm not worried.
So..... I'm goin into yet another Hospital (PA) to go on a program to get this new/old drug and I'm getting turned on to the Prof for my review. So waiting for a referral now. I don't know how long I'm going on to new regime.
Will let you know When I know.
more later
Chris
Anyway I got topped up with intragamm and got some more info about my condition from the Substitute doc who was my resident when I was in hospital so it was nice to catch up. He gave me some info about Klones (cells that are identical, they shouldn't be but in my case 50% are.) and about the number of celss that are mine and that are the Super Bro's (again about 50% I believe) that makes me a Chimera (http://en.m.wikipedia.org/wiki/Chimera_(mythology)) and part of my condition is called Chimerism. Cool eh?
My counts were okay... reds up to 117 which is good for me.
On to see the Big Boffin and he wantd me to start a new treatment for the Kidneys which is, in fact, and old treatment I had for my bone marrow. A course of Cell Cept or MicroPhenolate (sp?). It was last used on me to bridge the getting off of my big Immune Suppression drugs to no Immune supression. It is a little immune supression drug (or that's how I see it, it could be just its a totally different pathway to suppression or the like ...who knows). Anyway its easily tolorated by me, at least it was three years ago, so I'm not worried.
So..... I'm goin into yet another Hospital (PA) to go on a program to get this new/old drug and I'm getting turned on to the Prof for my review. So waiting for a referral now. I don't know how long I'm going on to new regime.
Will let you know When I know.
more later
Chris
Monday, March 30, 2015
just catching up
I'm in Canada at Victoria for my brothers Birthday and I have been asked how I am a bit and Thought I might give a full rundown here and then you all know.
I'm good .
More later.....
That's not going to fly now is it?
Okay Stats out of the way so two weeks ago at my monthy review with both Doc Shoozzenbootzen ans with the Big Boffin I found out that:
my red count was 105 (not serious but lwer than your 125)
My white count was very good.
the protein in my urine continues to be be way high and that's not good. but...
the protein in blood is normal !? which is confusing my docs usually if the protein is leking out the kidneys then its lower in the blood so some how my body is conpensating for the leak?
My fibrosis in the bone marrow is still not good but its been stable for months and months which is good.
My cretin in the blood is high ( whish is bad.)
My kdiabetes is totally under control and i hope to get off insulin soon and onto oral treatment soon.
So my Myleo Fibrosis is half crap but stable and my kidneys let out the thing ist to keep in and keeps in the thing its to let out. so they're half crap but stable as well so.....
I'm good
More Later.
Chris
I'm good .
More later.....
That's not going to fly now is it?
Okay Stats out of the way so two weeks ago at my monthy review with both Doc Shoozzenbootzen ans with the Big Boffin I found out that:
my red count was 105 (not serious but lwer than your 125)
My white count was very good.
the protein in my urine continues to be be way high and that's not good. but...
the protein in blood is normal !? which is confusing my docs usually if the protein is leking out the kidneys then its lower in the blood so some how my body is conpensating for the leak?
My fibrosis in the bone marrow is still not good but its been stable for months and months which is good.
My cretin in the blood is high ( whish is bad.)
My kdiabetes is totally under control and i hope to get off insulin soon and onto oral treatment soon.
So my Myleo Fibrosis is half crap but stable and my kidneys let out the thing ist to keep in and keeps in the thing its to let out. so they're half crap but stable as well so.....
I'm good
More Later.
Chris
Saturday, December 13, 2014
I've been putting this off, I think
`
I had a long talk with my nephrologist, well a half hour but that's long for him. I aksed him how i was going on this treatment because I know what the levels are and they are not all that great.
I told him I know that the docs don't like to speculate about the possible outcomes but really what's the go.
He said "That's like asking me to say what all the outcomes of chess game are after the first move. Boris Spatski could but not me".
I did find this out.... and keep in mind that this may change.
We talked about my kidneys are currently half crap. that is to say they are doing 40 to 50% of the effective job they should be doing.. The treatment I'm on (Pontecellie Protocol) , if it causes change the change will be in any of three time periods 1. Now. while in the treatment. 2. Immediately after word, 3. within a couple of months of the end of treatment, so we won't talk about future treatments until the new year (maybe Feb March).
I may be doing dialysis in 5 to 10 years if nothing else works. I'm a possible prospect for transplant now because of my age but in 10 years I won't be. He has a bunch of ninety year olds that are dong quite nicely on Dialysis so not to worry and that the science is getting better every year.
He was firm in saying that although the current treatment has not made significant change at the moment we won't know till later and that there are other treatments lined up as well.
Now to report what doc Schoozenbootzen said yesterday after looking at both my bone marrow and chemistry results. " I see stability" " Although there is not significant improvement in your kidney chemistry there is also no further decline, You have stopped getting worse" . WoooHooo I'll take any good news including at least you aren't getting worse. I find this to be hilarious but I do have a big black humour reservoir. He went on to say that my MyleoFibrosis is stable as well still there but not causing grief and not screwing up my blood counts to much.
I'm reflecting now to all those teachers that said "Chris could do so much more but he performs at an average level." My bone marrow has adopted my style and is performing at an average level. (I guess technically not even average cause that would be like all you people with fully functioning blood cells). Anyway I'm puttering along getting Intragamm each month and trying to be a bit fitter.
I've been going to aqua exercise class now for three weeks.will probably start in the gym in the new year. its good. And I have a lot of projects planned for around the house so should be able to keep fit that way too.
Oh and that chart I made up of the doses I thought I would get while in Greenslopes. I got over 50% of it right those I missed were very close. So I'm pretty proud of my knowledge about my own insulin production.
More later
Chris
I had a long talk with my nephrologist, well a half hour but that's long for him. I aksed him how i was going on this treatment because I know what the levels are and they are not all that great.
I told him I know that the docs don't like to speculate about the possible outcomes but really what's the go.
He said "That's like asking me to say what all the outcomes of chess game are after the first move. Boris Spatski could but not me".
I did find this out.... and keep in mind that this may change.
We talked about my kidneys are currently half crap. that is to say they are doing 40 to 50% of the effective job they should be doing.. The treatment I'm on (Pontecellie Protocol) , if it causes change the change will be in any of three time periods 1. Now. while in the treatment. 2. Immediately after word, 3. within a couple of months of the end of treatment, so we won't talk about future treatments until the new year (maybe Feb March).
I may be doing dialysis in 5 to 10 years if nothing else works. I'm a possible prospect for transplant now because of my age but in 10 years I won't be. He has a bunch of ninety year olds that are dong quite nicely on Dialysis so not to worry and that the science is getting better every year.
He was firm in saying that although the current treatment has not made significant change at the moment we won't know till later and that there are other treatments lined up as well.
Now to report what doc Schoozenbootzen said yesterday after looking at both my bone marrow and chemistry results. " I see stability" " Although there is not significant improvement in your kidney chemistry there is also no further decline, You have stopped getting worse" . WoooHooo I'll take any good news including at least you aren't getting worse. I find this to be hilarious but I do have a big black humour reservoir. He went on to say that my MyleoFibrosis is stable as well still there but not causing grief and not screwing up my blood counts to much.
I'm reflecting now to all those teachers that said "Chris could do so much more but he performs at an average level." My bone marrow has adopted my style and is performing at an average level. (I guess technically not even average cause that would be like all you people with fully functioning blood cells). Anyway I'm puttering along getting Intragamm each month and trying to be a bit fitter.
I've been going to aqua exercise class now for three weeks.will probably start in the gym in the new year. its good. And I have a lot of projects planned for around the house so should be able to keep fit that way too.
Oh and that chart I made up of the doses I thought I would get while in Greenslopes. I got over 50% of it right those I missed were very close. So I'm pretty proud of my knowledge about my own insulin production.
More later
Chris
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