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&half facts To begin with, fishing-boat bumpers needs to be cleaned in freshwater by light meal cleaning cleaning cleaning soap. Rinsing must be accomplished correctly then it's really being dehydrated the proper way.
&half facts When that is completed, possess a company and merge epoxy liquid liquid plastic resin and hardener together in the throw-away company. Usually, some tiny droplets of liquid liquid plastic resin is sufficient for 1 ounces of hardener. You need to mix the hardener nicely.
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&half facts Make use of a screwdriver to challenging within the finishes with the Cracks.
&half facts Now, distribute the liquid liquid plastic resin on sides with the bust safeguarding 1 " round the finishes.
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Thursday, May 17, 2012
Sunday, May 13, 2012
Embrace your inner biting monkey
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I've met many very interesting people in my line of work, but few are more interesting than my friend Dr. EH.
Dr. EH (his Ph.D is in something related to neuroscience) was formerly a very senior R&D technologist at the company for whom I work. He then went on to a very senior position in the US intelligence community. Now he does some consulting with us and I have the opportunity to chat with him every now and then about everything from technology at our company to some of what's going on in Iraq and Afghanistan (the declassified portions!). I had the pleasure of having lunch with him yesterday.
Another colleague at work has been through much more, cancer-wise, than I or, really, most people. About 20 years ago he was diagnosed with a type of cancer (don't know what, exactly, but it affected his esophagus, jaw / neck, tongue, throat, etc.) that was Stage 4, metastatic and very nasty. He went through a number of experimental procedures and has beaten it. And he's now working with the doctor at Sloan Kettering who saved his life to put together a program to help doctors communicate better with their patients that are diagnosed with cancer. EH is working with them both on this project.
So yesterday EH asked me my thoughts on the matter. He wondered, for example, if information was enough, or if a doctor needed to let a patient work through the emotional response for a few days before absorbing any more -- unless of course it's something like AML where you need immediate treatment (as in check the person into a hospital and administer chemo that day).
It's a complicated question, I told him, and it depends on the type of cancer. A person diagnosed with advanced pancreatic cancer, where the outcome is dire and fairly certain, will have different needs than a person diagnosed with an early stage hard cell tumor that can be removed. And yet both of these situations are fairly cut and dry. In the middle, we have Myeloma, where no two doctors seemingly agree on exactly what to do -- in fact doctors can't even agree on whether or not it is curable. There aren't many who believe it is, and yet BB sees more Myeloma than any doctor anywhere in the world. Consider that for a moment: more than any doctor anywhere in the world. He has 20-30 new patients a week. My diagnosing doctor SH, who is by all accounts a very good hematologist who sees a fair amount of Myeloma, told me he does maybe 10 transplants a year. Barlogie and his team do literally hundreds.
I digress...
Anyhow, another part of the challenge is the subjectivity involved in parsing the information. Quality of life, for example, is an extremely subjective measure. For me, while I've got to take these meds and while I've got side effects (including insomnia on dex nights, which explains my 3:30AM blogging) they are totally manageable and don't affect my quality of life that much. I have a good quality of life -- though certainly I look forward to being off meds and having an even better quality of life. But others would view my weekly dosage of Velcade, my daily Revlimid and my weekly Dex -- all of which do have side effects -- as a not-so-great quality of life. Some would certainly view my having to move 2,000 miles away for six months as a big hit to quality of life -- and I would agree. But it was six months, and tolerable. Others' mileage may vary...everyone answers these questions differently based on their own experiences, their own expectations from life, their attitudes, belief systems, age, etc.
I'd be very interested in knowing, from those of you who have contended with a diagnosis of Myeloma or any kind of cancer, what was or would have been helpful for you to hear when you were diagnosed...in terms of assisting you with understanding your diagnosis, coming to terms with it, and making decisions.
But that's only part of this post. We talked, then, about attitudes and how they impact treatment outcomes. I told EH that despite my being a spiritual person, I believe the brain is just another organ in the body, and one's attitude is therefore directly linked into the rest of the system. A brain set to kick the hell out of cancer versus a brain resigned to succumbing to it will have an impact on how the rest of the body handles treatment.
EH said that we definitively know this to be true -- that the brain is physiologically linked to the immune response, for example. This made me think about letting down my immune system which I'm sure led to my cancer, but also to being shaken awake and being resolved to handle whatever treatment dished out and to beat my Myeloma. So far, so good -- and I'm very fortunate that I've responded as well as I have to treatment because it's one thing to have confidence when things are working, and another to have confidence when they're not working so well. I had a few days of doubt -- search my blog for the phrase "noonday devil" -- when I wasn't seeing the markers go down. And those days were not fun. So once again, I am humbled by the grace of others who deal with more dire prognoses than I.
EH then said -- and I apologize to any animal-lovers, because I also felt a twinge when he said this -- that "in the course of my training, I've operated on a lot of monkeys. Some of them, when they came out of surgery, were just kind of down and depressed. They didn't last too long. But others, when they emerged from anesthesia...their first act was to try to bite you." He smiled. "Those ones tended to be okay."
So the message: be the angry, biting monkey in the face of cancer. Not the depressed, resigned monkey.
I have a friend going through a transplant right now, and another friend who is going to do one later this year after another surgery -- so this means you, guys!
In discussing this with EH, I observed that in my own case, I never allowed myself to believe I was going to die from Myeloma. I was certainly helped by finding a doctor who believed he could cure me, and, as noted, by my response to therapy. I wonder, also, where the Kubler-Ross "denial" stage of dealing with a crisis ends, and where my resolve in the face of diagnosis began. Was I perhaps just mired in the denial stage the whole time? Who knows.
I think about something like a transplant...how the book I read when I was diagnosed treated it as this monolithic, dreadful / awesome event and how I will consider it "my birthday." I contrast that with my approach: but for this blog and a good quantitative recall of things related to my therapy, I couldn't tell you my transplants were. My birthday is the same as it's been for 43 years. My transplant date isn't my birthday any more than my hernia surgery was, and probably less so than my LASIK procedure on my eyes. Similarly, I remember the attitude of one of the nurses in the infusion center: "Ah, melphalan's no big deal." No big deal. You can do it. You're bigger than cancer. The angry monkey is too cool to fret about a little chemo. The angry monkey has some swagger to him.
But EH also pointed out something important: cancer has a vote, too. He lost his wife to cancer -- and she was strong-willed, did not allow herself to believe she was going to die, and fought like hell. And it didn't matter. So resolve only goes so far. That, also, is humbling.
So where does that leave us? Well, everyone is different. I saw people in the clinic that didn't want to know what they had, didn't have any tolerance for understanding what treatment entailed or what the statistics behind the program where, and had no hope. I saw people like myself who took a different approach. I think, all else being equal, those who took an empowered approach have and will fare better. But "all else being equal" is a very big qualifier, indeed.
Food for thought.
As for me, I find myself of late disliking the side effects of my meds, but reminding myself with each swallow of Revlimid and Dex to mentally think "[expletive deleted] you, cancer!" before I swallow these pills. Whatever discomfort they cause me, it's 100X worse for whatever rogue cells I've got kicking around inside me. Although they don't show up on any tests, I've got somewhere between 100,000 and 1 billion cells (probably much closer to the first number now) that aren't with the program. So to hell with them.
And that's enough out of this angry monkey for the day.
I've met many very interesting people in my line of work, but few are more interesting than my friend Dr. EH.
Dr. EH (his Ph.D is in something related to neuroscience) was formerly a very senior R&D technologist at the company for whom I work. He then went on to a very senior position in the US intelligence community. Now he does some consulting with us and I have the opportunity to chat with him every now and then about everything from technology at our company to some of what's going on in Iraq and Afghanistan (the declassified portions!). I had the pleasure of having lunch with him yesterday.
Another colleague at work has been through much more, cancer-wise, than I or, really, most people. About 20 years ago he was diagnosed with a type of cancer (don't know what, exactly, but it affected his esophagus, jaw / neck, tongue, throat, etc.) that was Stage 4, metastatic and very nasty. He went through a number of experimental procedures and has beaten it. And he's now working with the doctor at Sloan Kettering who saved his life to put together a program to help doctors communicate better with their patients that are diagnosed with cancer. EH is working with them both on this project.
So yesterday EH asked me my thoughts on the matter. He wondered, for example, if information was enough, or if a doctor needed to let a patient work through the emotional response for a few days before absorbing any more -- unless of course it's something like AML where you need immediate treatment (as in check the person into a hospital and administer chemo that day).
It's a complicated question, I told him, and it depends on the type of cancer. A person diagnosed with advanced pancreatic cancer, where the outcome is dire and fairly certain, will have different needs than a person diagnosed with an early stage hard cell tumor that can be removed. And yet both of these situations are fairly cut and dry. In the middle, we have Myeloma, where no two doctors seemingly agree on exactly what to do -- in fact doctors can't even agree on whether or not it is curable. There aren't many who believe it is, and yet BB sees more Myeloma than any doctor anywhere in the world. Consider that for a moment: more than any doctor anywhere in the world. He has 20-30 new patients a week. My diagnosing doctor SH, who is by all accounts a very good hematologist who sees a fair amount of Myeloma, told me he does maybe 10 transplants a year. Barlogie and his team do literally hundreds.
I digress...
Anyhow, another part of the challenge is the subjectivity involved in parsing the information. Quality of life, for example, is an extremely subjective measure. For me, while I've got to take these meds and while I've got side effects (including insomnia on dex nights, which explains my 3:30AM blogging) they are totally manageable and don't affect my quality of life that much. I have a good quality of life -- though certainly I look forward to being off meds and having an even better quality of life. But others would view my weekly dosage of Velcade, my daily Revlimid and my weekly Dex -- all of which do have side effects -- as a not-so-great quality of life. Some would certainly view my having to move 2,000 miles away for six months as a big hit to quality of life -- and I would agree. But it was six months, and tolerable. Others' mileage may vary...everyone answers these questions differently based on their own experiences, their own expectations from life, their attitudes, belief systems, age, etc.
I'd be very interested in knowing, from those of you who have contended with a diagnosis of Myeloma or any kind of cancer, what was or would have been helpful for you to hear when you were diagnosed...in terms of assisting you with understanding your diagnosis, coming to terms with it, and making decisions.
But that's only part of this post. We talked, then, about attitudes and how they impact treatment outcomes. I told EH that despite my being a spiritual person, I believe the brain is just another organ in the body, and one's attitude is therefore directly linked into the rest of the system. A brain set to kick the hell out of cancer versus a brain resigned to succumbing to it will have an impact on how the rest of the body handles treatment.
EH said that we definitively know this to be true -- that the brain is physiologically linked to the immune response, for example. This made me think about letting down my immune system which I'm sure led to my cancer, but also to being shaken awake and being resolved to handle whatever treatment dished out and to beat my Myeloma. So far, so good -- and I'm very fortunate that I've responded as well as I have to treatment because it's one thing to have confidence when things are working, and another to have confidence when they're not working so well. I had a few days of doubt -- search my blog for the phrase "noonday devil" -- when I wasn't seeing the markers go down. And those days were not fun. So once again, I am humbled by the grace of others who deal with more dire prognoses than I.
EH then said -- and I apologize to any animal-lovers, because I also felt a twinge when he said this -- that "in the course of my training, I've operated on a lot of monkeys. Some of them, when they came out of surgery, were just kind of down and depressed. They didn't last too long. But others, when they emerged from anesthesia...their first act was to try to bite you." He smiled. "Those ones tended to be okay."
So the message: be the angry, biting monkey in the face of cancer. Not the depressed, resigned monkey.
I have a friend going through a transplant right now, and another friend who is going to do one later this year after another surgery -- so this means you, guys!
In discussing this with EH, I observed that in my own case, I never allowed myself to believe I was going to die from Myeloma. I was certainly helped by finding a doctor who believed he could cure me, and, as noted, by my response to therapy. I wonder, also, where the Kubler-Ross "denial" stage of dealing with a crisis ends, and where my resolve in the face of diagnosis began. Was I perhaps just mired in the denial stage the whole time? Who knows.
I think about something like a transplant...how the book I read when I was diagnosed treated it as this monolithic, dreadful / awesome event and how I will consider it "my birthday." I contrast that with my approach: but for this blog and a good quantitative recall of things related to my therapy, I couldn't tell you my transplants were. My birthday is the same as it's been for 43 years. My transplant date isn't my birthday any more than my hernia surgery was, and probably less so than my LASIK procedure on my eyes. Similarly, I remember the attitude of one of the nurses in the infusion center: "Ah, melphalan's no big deal." No big deal. You can do it. You're bigger than cancer. The angry monkey is too cool to fret about a little chemo. The angry monkey has some swagger to him.
But EH also pointed out something important: cancer has a vote, too. He lost his wife to cancer -- and she was strong-willed, did not allow herself to believe she was going to die, and fought like hell. And it didn't matter. So resolve only goes so far. That, also, is humbling.
So where does that leave us? Well, everyone is different. I saw people in the clinic that didn't want to know what they had, didn't have any tolerance for understanding what treatment entailed or what the statistics behind the program where, and had no hope. I saw people like myself who took a different approach. I think, all else being equal, those who took an empowered approach have and will fare better. But "all else being equal" is a very big qualifier, indeed.
Food for thought.
As for me, I find myself of late disliking the side effects of my meds, but reminding myself with each swallow of Revlimid and Dex to mentally think "[expletive deleted] you, cancer!" before I swallow these pills. Whatever discomfort they cause me, it's 100X worse for whatever rogue cells I've got kicking around inside me. Although they don't show up on any tests, I've got somewhere between 100,000 and 1 billion cells (probably much closer to the first number now) that aren't with the program. So to hell with them.
And that's enough out of this angry monkey for the day.
Thoughts on two years of maintenance...full list of side effects, meds, etc.
To contact us Click HERE
Hello friends. Sorry to take so long between posts but there's been precious little to update you on and I don't want to just blabber without having a point! : )
On Tuesday I start the last week of the 24th cycle of maintenance, which means in a few days I will have finished two years of drugs. Velcade, Revlimid and Dex as most of you know, are the three primary agents. On top of this I add host of drugs for supportive care, as follows:
This is without a doubt the worst of the side effects of my treatment. And the last time I was in Arkansas, they suggested I take Ragalin / Metaclopramide, which is used to treat gastroparesis. I have taken one pill the evening I take Dex, then one pill the next morning and evening, and again the next morning and evening.
Sometimes this works.
This last week, while on vacation with the family, it did not.
I found myself with the worst vomiting and nausea I've had at any point since diagnosis, which took me out of commission from 3PM in the afternoon through the next morning. I couldn't even keep down the antinausea pill. It was pretty rough.
I will take this up with the good folks in Arkansas when I see them a little more than two weeks from now. Hopefully they will come up with an alternative that works better.
I receive 2.5ml per week of Velcade. Times 100 infusions, that means...gadzooks...2500ml of Velcade. Have I really had 2.5 LITERS of this stuff pumped into me by now?
Toward what end, one might ask?
Well...
Okay, not the first time I have shown this slide. I'm now at the 2 year point of CR, on the low-risk slope. About 92% of people, having reached complete remission under Total Therapy 3 (which includes Velcade) are still in remission at this point. At around year 3.5, the line flattens out. I will get an update on this chart, which is a couple of years old, when I get to Arkansas but the point is: if it hasn't come back by year 4, it ain't coming back. About 89% of people that are low-risk and who reach complete remission are cured.
If I take 89/92, that's 96.7%. So as of now, I have a 96.7% chance of being cured. Pretty damn good odds, I'd say!
So that's why I continue. One more year of this and hopefully I'm done...although frankly I wouldn't mind continuing to the 3.5 year point because that when it fully flattens out. But doing so will require them to find a better solution for my gastroparesis / barfitis.
On Tuesday I start the last week of the 24th cycle of maintenance, which means in a few days I will have finished two years of drugs. Velcade, Revlimid and Dex as most of you know, are the three primary agents. On top of this I add host of drugs for supportive care, as follows:
- Revlimid suppresses the immune system and leaves me susceptible to shingles. Therefore I take daily Acyclovir.
- Revlimid can cause peripheral neuropathy. Therefore I take daily MetaNX, a variety of B vitamins that have been shown to reduce neuropathy among Alzheimer's patients.
- Revlimid can causes blood clots, or deep vein thrombosis. Therefore I take daily aspirin as a preventative.
- Revlimid suppresses platelets. I don't take anything for this, but it is part of the reason which I take one week off the drug every four weeks -- to allow them to recover. I take the aspirin to thin the blood despite this thrombocytopenia (low platelets) because it evidently is a different type of clotting that causes DVT. At any rate, keep the low platelets in mind...
- Revlimid causes hideous leg cramps, which can be prevented through quinine (which I would strongly prefer, except that it suppresses platelets...so I don't go that route). The only other route is to take magnesium supplements. Through trial and error, I take 750mg of Magnesium a day. Any less than this and I run the risk of waking up at four in the morning with a rusty hook in my leg (or at least that's what it feels like). 750mg of Magnesium a day is essentially like finishing the day with three shots of a powerful laxative. Every day.
- Dexamethsone causes pretty severe acid reflux, so I take Pantoprazole as needed (usually the night I take Dex and the following night) to keep this at bay.
- Dex also keep one awake, so I take Ambien or Ativan / Lorazepam 1-2 nights a week to ensure I get a decent night's sleep
- Which leaves Velcade. Velcade causes flu-like symptoms, nausea, etc. and generally the Dex (in addition to fighting Myeloma) helps to offset these symptoms by suppressing immune response so you don't get the fever as much, don't get the swelling, aching, etc. that comes with the flu, etc.
- Velcade, though, I have found, shuts off my digestive system. This is not particularly unusual, I am told. In fact, I just learned there is a name for it: gastroparesis. But I get the infusion on Tuesday afternoon and I find that by Wednesday, things have shut down, and they don't resume until Friday AM. That means anything I eat Wednesday or Thursday sits in my stomach, undigested, making me feel horribly bloated.
This is without a doubt the worst of the side effects of my treatment. And the last time I was in Arkansas, they suggested I take Ragalin / Metaclopramide, which is used to treat gastroparesis. I have taken one pill the evening I take Dex, then one pill the next morning and evening, and again the next morning and evening.
Sometimes this works.
This last week, while on vacation with the family, it did not.
I found myself with the worst vomiting and nausea I've had at any point since diagnosis, which took me out of commission from 3PM in the afternoon through the next morning. I couldn't even keep down the antinausea pill. It was pretty rough.
I will take this up with the good folks in Arkansas when I see them a little more than two weeks from now. Hopefully they will come up with an alternative that works better.
I receive 2.5ml per week of Velcade. Times 100 infusions, that means...gadzooks...2500ml of Velcade. Have I really had 2.5 LITERS of this stuff pumped into me by now?
Toward what end, one might ask?
Well...
Okay, not the first time I have shown this slide. I'm now at the 2 year point of CR, on the low-risk slope. About 92% of people, having reached complete remission under Total Therapy 3 (which includes Velcade) are still in remission at this point. At around year 3.5, the line flattens out. I will get an update on this chart, which is a couple of years old, when I get to Arkansas but the point is: if it hasn't come back by year 4, it ain't coming back. About 89% of people that are low-risk and who reach complete remission are cured.
If I take 89/92, that's 96.7%. So as of now, I have a 96.7% chance of being cured. Pretty damn good odds, I'd say!
So that's why I continue. One more year of this and hopefully I'm done...although frankly I wouldn't mind continuing to the 3.5 year point because that when it fully flattens out. But doing so will require them to find a better solution for my gastroparesis / barfitis.
Dosing to keep the ol' GI tract working...
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After last week's disaster, I figured I must be doing it wrong.
I looked at my bottle of Reglan (so funny that I thought it was Ragalin, most likely because of the folksy pronunciation in Arkansas!) and checked the dosing instruction. It was carried over from when it was prescribed to me as anti-nausea (probably coming out of a bone marrow or something with anesthesia) where it said to take one pill the night before "your procedure" and another the next day.
Because of this imprecise instruction, and based on the suggestion of JA, one of the physician assistants, I had taken one on Tuesday evenings (with my dex) and one the next morning, and one the next night.
This approach failed miserably last week.
So I use the Google Machine on the Interwebs and found that when prescribed for gastroparesis (med-speak for "gut shuts down") one takes one pill 30 minutes before each meal, then again at bedtime.
I tried that approach this week, and it seemed to work better than last week, certainly.
In other news, fraternizing with the children of other parents for a few days in a family resort has led to me getting sick. No big surprise there. I am hoping I caught it early enough and started taking Tamiflu in time to cut off bronchitis. So far, day three of sickness, just a tiny dry cough to go with the nasal stuffiness, swollen glands and sore throat. Time will tell.
There is a silver lining, though: proof positive that I must continue my policy of avoiding the enormous fair at my daughter's school!
I looked at my bottle of Reglan (so funny that I thought it was Ragalin, most likely because of the folksy pronunciation in Arkansas!) and checked the dosing instruction. It was carried over from when it was prescribed to me as anti-nausea (probably coming out of a bone marrow or something with anesthesia) where it said to take one pill the night before "your procedure" and another the next day.
Because of this imprecise instruction, and based on the suggestion of JA, one of the physician assistants, I had taken one on Tuesday evenings (with my dex) and one the next morning, and one the next night.
This approach failed miserably last week.
So I use the Google Machine on the Interwebs and found that when prescribed for gastroparesis (med-speak for "gut shuts down") one takes one pill 30 minutes before each meal, then again at bedtime.
I tried that approach this week, and it seemed to work better than last week, certainly.
In other news, fraternizing with the children of other parents for a few days in a family resort has led to me getting sick. No big surprise there. I am hoping I caught it early enough and started taking Tamiflu in time to cut off bronchitis. So far, day three of sickness, just a tiny dry cough to go with the nasal stuffiness, swollen glands and sore throat. Time will tell.
There is a silver lining, though: proof positive that I must continue my policy of avoiding the enormous fair at my daughter's school!
A very cool dialogue with an online MM presence treated very differently than I...
To contact us Click HERE
Hello folks. I will shortly be giving you an update on my visit to Arkansas last week (which was good, still in complete remission, a couple of mildly unsettling things to report but nothing major).
But I didn't want to forget about a very pleasant conversation I had in the guise of a focus group on bone issues and bisphosphonate treatment. Sponsored by the manufacturers of Zometa, I've done one of these before in a larger group and they essentially ask for patients' opinions of how MM patients learn of bone problems, if they have a good understanding of them, how they are treated, etc. I'm appreciative of the opportunity to contribute to consumer research that will help these companies improve the efficacy of treatment. I certainly think that had the medical community -- and I include in this some generally good doctors that I saw before BB -- had a better idea of this, I'd not have had the broken back that I ended up with in Arkansas.
Anyhow, what set this apart was not so much the questions but the other person doing the answering. As he is about as public as I am in the MM "blogosphere" I doubt he will mind that I mention his name: David Emerson. I remember reading some of David's posts on Myeloma on various Internet message boards when I was evaluating treatment. David seemed very knowledgeable, and if I recall correctly was well aware of BB's methods, which I believe he was fairly even-handed about. I remember David being a fan of alternative medicine. I've joked before that the three approaches to treatment are: cure, control and curcumin! But after speaking with David, my sense is that he believes certain things (eating well, exercise, curcumin as appropriate) are good things to do regardless, and in this I fully agree although outside of Indian food (which I love) I don't take much of the orange spice.
David and I had a remarkably interesting exchange, and shared most of the same opinions on bisphosphonate treatment (essentially: it's important, and people don't know or care that much about it or its side effects because Myeloma gives you much bigger fish to fry). David and I also both, I think, believe we are effectively cured (or in my case, close to the end of the treatment tunnel). But we couldn't have arrived there more differently. David was treated by Dr. Stanislaw Burzynski at his clinic, with antineoplaston therapy. He's lived quite some time without any disease recurrence -- I think if BB looked at some blood work and marrow and it was negative, he'd probably pronounce David cured.
Burzynski is the subject of an interesting documentary which essentially claims that he has been smeared by the government and the American Cancer Society with the intent of covering up the success of antineoplaston therapy. I'll spare you the counterarguments. Let's suffice it to say that this is EXTREMELY controversial -- much more so than BB.
I thought it was very interesting that people coming from completely opposite positions on MM treatment found common ground and had a delightful conversation. Wouldn't it be nice if we could make that happen in politics? :)
I'm a pragmatist. I'm much more likely to be cured of cancer than that is likely to happen. :)
But I didn't want to forget about a very pleasant conversation I had in the guise of a focus group on bone issues and bisphosphonate treatment. Sponsored by the manufacturers of Zometa, I've done one of these before in a larger group and they essentially ask for patients' opinions of how MM patients learn of bone problems, if they have a good understanding of them, how they are treated, etc. I'm appreciative of the opportunity to contribute to consumer research that will help these companies improve the efficacy of treatment. I certainly think that had the medical community -- and I include in this some generally good doctors that I saw before BB -- had a better idea of this, I'd not have had the broken back that I ended up with in Arkansas.
Anyhow, what set this apart was not so much the questions but the other person doing the answering. As he is about as public as I am in the MM "blogosphere" I doubt he will mind that I mention his name: David Emerson. I remember reading some of David's posts on Myeloma on various Internet message boards when I was evaluating treatment. David seemed very knowledgeable, and if I recall correctly was well aware of BB's methods, which I believe he was fairly even-handed about. I remember David being a fan of alternative medicine. I've joked before that the three approaches to treatment are: cure, control and curcumin! But after speaking with David, my sense is that he believes certain things (eating well, exercise, curcumin as appropriate) are good things to do regardless, and in this I fully agree although outside of Indian food (which I love) I don't take much of the orange spice.
David and I had a remarkably interesting exchange, and shared most of the same opinions on bisphosphonate treatment (essentially: it's important, and people don't know or care that much about it or its side effects because Myeloma gives you much bigger fish to fry). David and I also both, I think, believe we are effectively cured (or in my case, close to the end of the treatment tunnel). But we couldn't have arrived there more differently. David was treated by Dr. Stanislaw Burzynski at his clinic, with antineoplaston therapy. He's lived quite some time without any disease recurrence -- I think if BB looked at some blood work and marrow and it was negative, he'd probably pronounce David cured.
Burzynski is the subject of an interesting documentary which essentially claims that he has been smeared by the government and the American Cancer Society with the intent of covering up the success of antineoplaston therapy. I'll spare you the counterarguments. Let's suffice it to say that this is EXTREMELY controversial -- much more so than BB.
I thought it was very interesting that people coming from completely opposite positions on MM treatment found common ground and had a delightful conversation. Wouldn't it be nice if we could make that happen in politics? :)
I'm a pragmatist. I'm much more likely to be cured of cancer than that is likely to happen. :)
Belated reporting of last checkup
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Where has the time gone? Children are back in school, my band (a time-consuming project) has been rehearsing for a brief European tour of sorts, and my job remains a demanding one. Life is busy!
I had a good checkup in Arkansas. I remain in complete remission. But it wasn't a perfect one.
First, there was a brief scare when my bone marrow biopsy came back with 13% plasma cells in the aspirate, 10% in the core. Recall, gentle readers, that the core marrow is more important since that is where new cells are being generated.
At any rate, such a level of plasma cells was deemed "abnormal plasmacytosis" on my chart, with several studies still ongoing. The core was negative for myeloma, so that much was good...but I didn't like the number of plasma cells.
I was pretty unnerved for about an hour until the physician's assistant CR came in and said it was likely high because I was recovering from a cold. He had a cold himself, and suggested that his plasma cells were probably 30% right now. Even as I exhaled, my mind went back to a conversation with Kathy Giusti from around my diagnosis where she had said that it's a bad idea to have a blood test, even, when you have a cold since immunoglobins all shoot up at that time. Well, the blood was negative for Myeloma, and it all looked good. But I think there was some residual reaction from my immune system, hence the plasma cells. In any case, no big deal.
I was somewhat saddened, though, to look at the MRI and see that the last four little lesions in my spine are stable -- I was hoping they would fully resolve. BB was somewhat perturbed by this same thing. So he prescribed more Zometa. I'll return in six months, and we'll see what things look like then. In the meantime, I'll continue to get my cancer markers every two weeks from the lab out here. I anticipate there'll be nothing of note.
Twelve more months of maintenance, hopefully, and then we'll see how to transition off drugs and what my immune system looks like. Will I be on Acyclovir for the rest of my life? Will I need to be reimmunized? Can I expect my immune system to recover and behave normally? Interesting and important questions for a Myeloma patient.
There's more to report but work calls...so I'll fill you in on the other stuff in the days ahead.
I had a good checkup in Arkansas. I remain in complete remission. But it wasn't a perfect one.
First, there was a brief scare when my bone marrow biopsy came back with 13% plasma cells in the aspirate, 10% in the core. Recall, gentle readers, that the core marrow is more important since that is where new cells are being generated.
At any rate, such a level of plasma cells was deemed "abnormal plasmacytosis" on my chart, with several studies still ongoing. The core was negative for myeloma, so that much was good...but I didn't like the number of plasma cells.
I was pretty unnerved for about an hour until the physician's assistant CR came in and said it was likely high because I was recovering from a cold. He had a cold himself, and suggested that his plasma cells were probably 30% right now. Even as I exhaled, my mind went back to a conversation with Kathy Giusti from around my diagnosis where she had said that it's a bad idea to have a blood test, even, when you have a cold since immunoglobins all shoot up at that time. Well, the blood was negative for Myeloma, and it all looked good. But I think there was some residual reaction from my immune system, hence the plasma cells. In any case, no big deal.
I was somewhat saddened, though, to look at the MRI and see that the last four little lesions in my spine are stable -- I was hoping they would fully resolve. BB was somewhat perturbed by this same thing. So he prescribed more Zometa. I'll return in six months, and we'll see what things look like then. In the meantime, I'll continue to get my cancer markers every two weeks from the lab out here. I anticipate there'll be nothing of note.
Twelve more months of maintenance, hopefully, and then we'll see how to transition off drugs and what my immune system looks like. Will I be on Acyclovir for the rest of my life? Will I need to be reimmunized? Can I expect my immune system to recover and behave normally? Interesting and important questions for a Myeloma patient.
There's more to report but work calls...so I'll fill you in on the other stuff in the days ahead.
Quick observation on Velcade...
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So I was out of the country last week and for the first time in two years of maintenance, missed a Velcade infusion. I'm told I'm allowed to do that twice a year and remain on protocol, so no biggie.
However, I did notice I did not have gastroparesis. Thus, my brilliant powers of deduction lead me to conclude that it is Velcade, and not Revlimid or Dex, that is the culprit.
This may be of use the others, hence my posting it. I have a checkup with my local onc tomorrow and will post whatever news is merited!
However, I did notice I did not have gastroparesis. Thus, my brilliant powers of deduction lead me to conclude that it is Velcade, and not Revlimid or Dex, that is the culprit.
This may be of use the others, hence my posting it. I have a checkup with my local onc tomorrow and will post whatever news is merited!
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