This thread seems just like conversations in a physician's waiting room. I wonder what makes you guys post all your illnesses? Does posting them here fulfill any purpose? - Yes? - If so, lies it in becoming more self-conscious? As is known, some guys have difficulties in detecting their own feelings / emotions, let alone verbalizing them. In such cases, I can understand it as a form of "fun" therapy. Honestly guys... what are you up to?
Friendship
And support. Not fun in any way. At least as far as the conversations regarding cancer here.
Once upon a time we had a journal part of RP where these kinds of conversations took place off on the side. With much gratitude it has been preserved at the legacy RP site. Now we just have some threads like this to continue these very long running conversations. Talking about cancer makes many feel squeamish or uneasy. But for those of us having these conversations, they are an integral part of our support systems. We find our support where it is and hold on to it if it is helping. Not everyone is cut out for traditional group support or are far away from them as our fellow traveler, Dave. I don't or wouldn't do well in one. There are many more survivors here and they participate as they wish or need. The help and insight I have experienced here, especially in my beginning was my primary support and pretty much still is.. It is a major part of of the reason(s) I am still around all these years later.
You would be right that some of these conversations sound like those in a doctor's waiting room. I am at my oncologist's office at least every other Wednesday for a shot at minimum and have been for at least a dozen or more years. It is something that I will be doing until I drop or they don't let me in anymore. I have had many, many conversations with patients. New ones just beginning their journey and the well seasoned veterans like me. Most of the time I initiate them if I sense an opening or a feeling of apprehension. It is to instill a sense of togetherness and convey how important attitude is to the process. I have run into people I know who were customers where I have worked and have outlived most of them, so far. You offer the new ones hope and instill confidence in their caregivers being able to offer first hand knowledge and my own survivor ship as an example of the quality of care they seek. The veterans, we compare notes and observations and offer congratulations for hanging in for so long and encouragement to keep on doing what we've been doing since it seems to be working. The one thing all of us veterans agree on is that attitude is everything and is just as important as the medicine.
Surviving is a work in progress. You learn what is important having conversations because the doctors are learning along the way same as the patient is, Cancer is ahead of the science. Science plays catchup to cancer. There needs to be a blend of both science and anecdotal experiences in order to survive and keep going. Supplements or nutrition that the AMA does not approve of are not always mentioned either because of sticking to the book or simply just being uninformed. And individual game plans. Example being the stature of antioxidants as the holy grail of attacking everyday issues. Me, I've moved on and am focused on anti - inflammatory agents. I have concluded through careful observations over many, many years that inflammation is the primary problem that I have some control of and also the root source of most preventable health care issues.
An example being Turmeric. Dave and I had a rather lengthy conversation here about it some tens years ago and maybe in this very thread. Long before it was recognized and now widely accepted as an important supplement. It has been a part of my daily regime ever since. Some several months ago I brought forth my introduction to gluten free Himalayan Tartary Buckwheat as the current Mac Daddy anti inflammatory agent. The conversation went a little sideways over a side benefit to glucose issues. But it was really about being an anti inflammatory agent. And just a week ago Wednesday during my first annual follow up checkup with my new cardiologist, I brought up this particular type of buckwheat. He was indeed aware of it and approved its use for the purpose of combatting inflammation for the reasons I have already mentioned.
These things are stumbled upon. Like Vitamin D3. Once again used since post transplant beginning nearly 15 years ago. I was told to stay out of the sun for a year afterwards. My GP IIRC scheduled a test and it was 15. The range for minimum is 25 to an upper limit of 80ish. Only in the past few years has its importance been truly recognized, yet many doctors still are unaware of its importance. I have had to beg my onc for a test and insist. Now I get one once a year and have figured out how to tune my dosage properly. These tests are not generally offered to patients and you have no idea what your level is without a test. It is a vital hormone actually, not just a vitamin and plays a key role in the immune system as well as a synergistic part of many other metabolic functions.
I could keep going. This is what I get out these conversations with what are now old friends and the value I place on them. Others can offer their own thoughts.
Lastly when I might say something like "It sucks to be me" when bringing up some new development, it is not whining or self pity, it is just stating more like "here we go again, now what ?" When you live with something inside you that is trying to kill you, you have to find ways to deal with it. Humor is a large part of that. You never ever make fun of it, just your plight. I don't know if you have to have cancer to understand that, but that is my story and I'm sticking to it.
And then the real key to survival is being around to benefit from the next breakthrough. As I started out, cancer is ahead of the science and will be for the foreseeable future.
This thread seems just like conversations in a physician's waiting room. I wonder what makes you guys post all your illnesses? Does posting them here fulfill any purpose? - Yes? - If so, lies it in becoming more self-conscious? As is known, some guys have difficulties in detecting their own feelings / emotions, let alone verbalizing them. In such cases, I can understand it as a form of "fun" therapy.
This thread seems just like conversations in a physician's waiting room. I wonder what makes you guys post all your illnesses? Does posting them here fulfill any purpose? - Yes? - If so, lies it in becoming more self-conscious? As is known, some guys have difficulties in detecting their own feelings / emotions, let alone verbalizing them. In such cases, I can understand it as a form of "fun" therapy.
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.
You know why? Itâs because youâre finally in a good place.
When I was in school, we all promised each other that weâd buy a dog and kick it every day because bad things happen when youâre happy.Keep up the fight!
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.
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.
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.
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.
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.
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.
