Location: No longer in a hovel in effluent Damnville, VA Gender:
Posted:
May 15, 2024 - 3:33pm
In the last few months I've developed an odd symptom - full body itch while exercising. Goes away after cool down. Found its totally skin temp related. I can take a shower and slowly up the water temp and at a certain temp the itch starts and lowering the temp it goes away. Got tested for all sorts of allergies and CBC and liver panels etc all are pretty normal. Anti-histamines had no effect. Skin cremes had no effect.
So then I got tested for various tumor markers. Turns out CEA is elevated but CEA 19.9 is normal. I had lung cancer and surgery in 2006 so got Chromagramin A tumor marker test and it was normal. Had a colonoscopy just a few months ago and that was normal.
So next week I get to see 2 Docs and likely much more testing to determine just cancer I've been lucky enough to get this time. CEA is not specific to any one type of cancer so could be one of several choices. What fun.
Oh, boy. So I'm learning really fast about low IgG.
We just got a denial of payment from my insurance company for the one treatment I just had. The cost of a single treatment is $10k as I have come to find out. I had heard the 10k part but didn't know if was a per dose or per year. Didn't want to look. The company says that there are alternative self administered or over the counter options and want to shove it onto Medicare Part D. One treatmentwillimmediately put me in the donut hole.
So I'll be taking it to my Onc this Wednesday to work on the appeal process and also find out what real options there are.
Seems that this is a common treatment for CIDP which all of a sudden is an autoimmune disease all over the place in TV commercials for a new med. It is also a treatment for Myasthenia Gravis (also an autoimmune) which one of my closest friends was recently diagnosed with. My problem is from cancer and the treatment which destroyed my immune system.
This is not a drill. Practice is over. This is for all the marbles. Time to get busy and ask questions. .
Update: The Clinic has the original approval letter and said that they would not have provided me the infusion without it. Future rounds are allowed (so far). I am keeping the next appointment for the next dose which will be May 15. So I'll find out when I show up.
I've also read about all kinds of side affects especially vascular and wouldn't ya know it, my every 6 month visit with my new cardiologist is this Wednesday so I'll pick his brains about this stuff and the side affects he knows. Serendipity do dah ...
Oh, boy. So I'm learning really fast about low IgG.
We just got a denial of payment from my insurance company for the one treatment I just had. The cost of a single treatment is $10k as I have come to find out. I had heard the 10k part but didn't know if was a per dose or per year. Didn't want to look. The company says that there are alternative self administered or over the counter options and want to shove it onto Medicare Part D. One treatmentwillimmediately put me in the donut hole.
So I'll be taking it to my Onc this Wednesday to work on the appeal process and also find out what real options there are.
Seems that this is a common treatment for CIDP which all of a sudden is an autoimmune disease all over the place in TV commercials for a new med. It is also a treatment for Myasthenia Gravis (also an autoimmune) which one of my closest friends was recently diagnosed with. My problem is from cancer and the treatment which destroyed my immune system.
This is not a drill. Practice is over. This is for all the marbles. Time to get busy and ask questions. .
Just heard an interview on the radio with a local MD / Prof medical tech at CWRU. He is working on a DARPA project to create artificial blood. It started in 2020 and now in 2024 with the progress made is expected to be in clinicals within 4 to 5 years. He is working on the platelets part. The red cells are well under way. Didn't here anything about the white cells.
The end product would be powdered. Just add sterile water or saline and poof ! Originally for battle injuries, but also for civilian uses in ambulances and onboard on choppers. He went into the risks and what the body does to try and deal with extreme blood loss which among other things makes a very acidic fluid in order to try and clot.
I'll post more if I can find it. Writing this down before I forget the details.
Cheers !
that would be great
i think researchers in japan may have done something similar
Just heard an interview on the radio with a local MD / Prof medical tech at CWRU. He is working on a DARPA project to create artificial blood. It started in 2020 and now in 2024 with the progress made is expected to be in clinicals within 4 to 5 years. He is working on the platelets part. The red cells are well under way. Didn't here anything about the white cells.
The end product would be powdered. Just add sterile water or saline and poof ! Originally for battle injuries, but also for civilian uses in ambulances and onboard on choppers. He went into the risks and what the body does to try and deal with extreme blood loss which among other things makes a very acidic fluid in order to try and clot.
I'll post more if I can find it. Writing this down before I forget the details.
Today, my 86 yr old Mum asked to stop her treatment today. A month in an army hospital, with daily aggressive needles, centisis and tubes; she held up the white flag and asked for palliative care. It's been a month in one of the top military hospitals in the Nation and she's one step forward - two back. Poor gal is tired. She let me know what she wanted. We got to say what all of us want the chance to say. Mortality and the preciousness of LIFE BORN - not imagined - is intense right now.
RP is another great medicine for that.
And so is this crazy community of phenomenal music lovers.
Iâm very sorry Isabeau. Itâs good she can make the decision herself.
Froze my ass off sitting in that chair for 4 hours though. The only downside. Couldn't dress warm enough having to wear short sleeves and the blankets only do so much. Came home and crawled in bed for about 7 hours to warm up.
Have no idea how I'm supposed to feel afterwards and how long it takes to actually benefit from this but I do feel pretty good this morning which means that I can work the day after which was another concern.
Off to see the lizard shortly for my first IgG infusion. Been doing curls trying to build up my veins in my spare arm in order to hopefully avoid a vein blowout and infiltration.
Been taking Advil the past week to thin my blood to make it easier to receive hopefully. Hopefully its a gravity bag without using a pump.
Almost 15 years to the day when I went in to start my transplant.
Off to see the lizard shortly for my first IgG infusion. Been doing curls trying to build up my veins in my spare arm in order to hopefully avoid a vein blowout and infiltration.
Been taking Advil the past week to thin my blood to make it easier to receive hopefully. Hopefully its a gravity bag without using a pump.
Almost 15 years to the day when I went in to start my transplant.
Off to see the lizard shortly for my first IgG infusion. Been doing curls trying to build up my veins in my spare arm in order to hopefully avoid a vein blowout and infiltration.
Been taking Advil the past week to thin my blood to make it easier to receive hopefully. Hopefully its a gravity bag without using a pump.
Almost 15 years to the day when I went in to start my transplant.
Location: Really deep in the heart of South California Gender:
Posted:
Apr 7, 2024 - 4:51pm
Antigone wrote:
I think it's safe to say it's NOT COPD which is very good. And there is actually a clinical name for (as a long ago ex described it) "how can all that snot come out of that little nose"?
Vasomotor Rhinitis.
Today, my 86 yr old Mum asked to stop her treatment today. A month in an army hospital, with daily aggressive needles, centisis and tubes; she held up the white flag and asked for palliative care. It's been a month in one of the top military hospitals in the Nation and she's one step forward - two back. Poor gal is tired. She let me know what she wanted.
We got to say what all of us want the chance to say.
Mortality and the preciousness of LIFE BORN - not imagined - is intense right now. RP is another great medicine for that. And so is this crazy community of phenomenal music lovers.
Today, my 86 yr old Mum asked to stop her treatment today. A month in an army hospital, with daily aggressive needles, centisis and tubes; she held up the white flag and asked for palliative care. It's been a month in one of the top military hospitals in the Nation and she's one step forward - two back. Poor gal is tired. She let me know what she wanted. We got to say what all of us want the chance to say. Mortality and the preciousness of LIFE BORN - not imagined - is intense right now.
RP is another great medicine for that.
And so is this crazy community of phenomenal music lovers.
Today, my 86 yr old Mum asked to stop her treatment today. A month in an army hospital, with daily aggressive needles, centisis and tubes; she held up the white flag and asked for palliative care. It's been a month in one of the top military hospitals in the Nation and she's one step forward - two back. Poor gal is tired. She let me know what she wanted. We got to say what all of us want the chance to say. Mortality and the preciousness of LIFE BORN - not imagined - is intense right now.
RP is another great medicine for that.
And so is this crazy community of phenomenal music lovers.
He has led an amazing life and I wish him many more enjoyable years.
Certainly a part of my parent's and my tween history. Nobody like him. Did you know he is a prolific MUSICAL composer as well? The man can play piano and often submits background melodies for films, lauded by many for his talent. Amazing we aren't aware of that side of his talent.
I think it's safe to say it's NOT COPD which is very good. And there is actually a clinical name for (as a long ago ex described it) "how can all that snot come out of that little nose"?
Vasomotor Rhinitis.
