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Doing the least to save your life...

I just saw this tonight, and I'm giving you my well-wishes too fowlsound. I have another 6 months before they scan me and see if I need another big dose of radiation.

I met my endocrinologist after my thyroidectomy. I was in moderate pain and beginning to exhibit some signs of hypothyroidism. I was also pretty frightened, but my excellent surgeon recommended him and my research had backed up that recomendation.

He explained everything about how the thyroid functions in the body, even drawing diagrams, and what my body would do now that it didn't have one. He explained the survival rates for my type of cancer and the various therapies that are used for it, and why they are used. Then he paused for a moment and started into his "Now, people will tell you about all sorts of 'alternative therapies..'"

I stopped him right there and told him that I believe in the scientific method. That I had already researched the different therapies for thyroid cancer. And that if anyone tried to sell me snake oil I'd give them hell. He smiled. We've had a great doctor-patient relationship ever since.
 
Foodbunny said:
I just saw this tonight, and I'm giving you my well-wishes too fowlsound. I have another 6 months before they scan me and see if I need another big dose of radiation.

I met my endocrinologist after my thyroidectomy. I was in moderate pain and beginning to exhibit some signs of hypothyroidism. I was also pretty frightened, but my excellent surgeon recommended him and my research had backed up that recomendation.

He explained everything about how the thyroid functions in the body, even drawing diagrams, and what my body would do now that it didn't have one. He explained the survival rates for my type of cancer and the various therapies that are used for it, and why they are used. Then he paused for a moment and started into his "Now, people will tell you about all sorts of 'alternative therapies..'"

I stopped him right there and told him that I believe in the scientific method. That I had already researched the different therapies for thyroid cancer. And that if anyone tried to sell me snake oil I'd give them hell. He smiled. We've had a great doctor-patient relationship ever since.
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Man I hate the waiting, don't you? I am currently waiting on another set of scans and MRI/CT and bone marrow biopsy coming up in march. It's the waiting that sucks!

I wish you the best and please PM me your progress.

Hell, give a copy of my paper to your doc. You two could have a giggle at the mental sight of me punching a rieki practitioner.

Stay strong. :)
 
I was wondering what fowlsound's avatar was... :jaw-dropp

I had a calcified bone chip removed from my knee back in 1996. When I woke up from the surgery, they told me it was a tumor! :eek:

For 24 hours, I didn't know whether it was malignant or not. Proximity to your own mortality does things to you.

People who spout "alternative medicine," and have not yet come this close to their mortality need to shut up.

People who spout "alternative medicine," and have come this close to their mortality are just lucky. Individuals experiencing the randomness of chance form odd superstitions. I'll trust peer-reviewed, reproducable science any day.

One more thing:
:soapbox
How the hell could any "alternative medicine" replace that missing vertebra?!?

Huh? How? Come on, we're all waiting for it. How.



Edit:
Some typos.
 
Almo said:
I was wondering what fowlsound's avatar was... :jaw-dropp

I had a calcified bone chip removed from my knee back in 1996. When I woke up from the surgery, they told me it was a tumor! :eek:

For 24 hours, I didn't know whether it was malignant or not. Proximity to your own mortality does things to you.

People who spout "alternative medicine," and have not yet come this close to their mortality need to shut up.

People who spout "alternative medicine," and have come this close to their mortality are just lucky. Individuals experiencing the randomness of chance form odd superstitions. I'll trust peer-reviewed, reproducable science any day.

One more thing:
:soapbox
How the hell could any "alternative medicine" replace that missing vertebra?!?

Huh? How? Come on, we're all waiting for it. How.



Edit:
Some typos.
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yeah, what no one really tells you is "tumor" = anything that grows that shouldn't. Sometimes bad, sometimes not so bad, sometimes deaadly.

I'm with you, man. SCience over woo anyday.

I'm still waiting for a chiro or homeopath to tell me how they would have fixed it. Of course they all would say that I should have been doing their treatments all aqlong, and that would have prevented this whole mess in teh first place.

Whatever.
 
Sadly, someone I've worked with for 18 years has just been diagnosed with an extremely nasty brain tumour. Glioblastoma multiforme. To be honest, I think she'll be lucky to see another Christmas. The treatment on offer is only palliative, and should extend her life somewhat, but there isn't a cure.

What really upset me, when I Googled it to double-check the depressing statistics, was that while the real Google search links were all proper, kosher medical information, the search also turned up a load of "sponsored links" which were offering "the cure your doctor won't tell you about" and stuff like that. Now my friend isn't that stupid (and she has resolved not to look it up anyway so as not to get depressed), but can you imagine the cruelty of the false hope these links offer to people who don't understand the health fraud business? It's disgusting.

Rolfe.
 
Rolfe said:
Sadly, someone I've worked with for 18 years has just been diagnosed with an extremely nasty brain tumour. Glioblastoma multiforme. To be honest, I think she'll be lucky to see another Christmas. The treatment on offer is only palliative, and should extend her life somewhat, but there isn't a cure.

What really upset me, when I Googled it to double-check the depressing statistics, was that while the real Google search links were all proper, kosher medical information, the search also turned up a load of "sponsored links" which were offering "the cure your doctor won't tell you about" and stuff like that. Now my friend isn't that stupid (and she has resolved not to look it up anyway so as not to get depressed), but can you imagine the cruelty of the false hope these links offer to people who don't understand the health fraud business? It's disgusting.

Rolfe.
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I agree 100%, and my sincerest condolences. I hope your friend is the exception to the statistics and makes a miraculous recovery. My thoughts are with you.
 
Rolfe said:
Sadly, someone I've worked with for 18 years has just been diagnosed with an extremely nasty brain tumour. Glioblastoma multiforme. To be honest, I think she'll be lucky to see another Christmas. The treatment on offer is only palliative, and should extend her life somewhat, but there isn't a cure.

What really upset me, when I Googled it to double-check the depressing statistics, was that while the real Google search links were all proper, kosher medical information, the search also turned up a load of "sponsored links" which were offering "the cure your doctor won't tell you about" and stuff like that. Now my friend isn't that stupid (and she has resolved not to look it up anyway so as not to get depressed), but can you imagine the cruelty of the false hope these links offer to people who don't understand the health fraud business? It's disgusting.

Rolfe.
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Ow, ow, ow, that's nasty!

You have my sympathy. I doubt if my "prayer" would be very efficacious.

I hope at least any pallative care makes the person comfortable, and that they're happy until the end.
 
Rolfe said:
What really upset me, when I Googled it to double-check the depressing statistics, was that while the real Google search links were all proper, kosher medical information, the search also turned up a load of "sponsored links" which were offering "the cure your doctor won't tell you about" and stuff like that.
Click to expand...


He's right -- check it out. The top two (when I did the search) contained legitimate information, but the last was for some bullsh*t herb --"Effective Chinese medicine directly from China". No studies were mentioned, surprise surprise.
 
Rolfe said:
Sadly, someone I've worked with for 18 years has just been diagnosed with an extremely nasty brain tumour. Glioblastoma multiforme. To be honest, I think she'll be lucky to see another Christmas. The treatment on offer is only palliative, and should extend her life somewhat, but there isn't a cure.

What really upset me, when I Googled it to double-check the depressing statistics, was that while the real Google search links were all proper, kosher medical information, the search also turned up a load of "sponsored links" which were offering "the cure your doctor won't tell you about" and stuff like that. Now my friend isn't that stupid (and she has resolved not to look it up anyway so as not to get depressed), but can you imagine the cruelty of the false hope these links offer to people who don't understand the health fraud business? It's disgusting.
Click to expand...
Over on open2.net forums on this thread I had a little run in with Jill Pay, self proclaimed homeopath and Reiki "master", and member of Acorn to Oak.
As a straw man argument she raised the Glasgow girl who had a mistaken radiotherapy overdose for her brain tumour as an example of bad orthodox medicine, which as we all know just treats "symptoms".
I suggested that tragic as it was that she got an overdose, at least the radiotherapy had cured the tumour, and what would she have preferred - Reiki or radiotherapy?
Her response was
Firstly I would say that I see the tumour as a symptom - not a cause of symptoms. Treating the tumour "effectively" with radio- or chemotherapy does not treat the underlying cause of the cancer.
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Go figure.

ETA - I have just been reviewing the "code of practice" under which these practitioners function. I don't know whether to laugh or cry.
8. Members must never claim to 'cure'. The possible therapeutic benefits may be described; 'recovery' must never be guaranteed.
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Is this an admission they can't cure people?

15. Members must not advise a particular course of medical treatment, such as to undergo an operation or to take specific drugs.
16. Members must never give a medical diagnosis to a client in any circumstances, unless medically qualified to do so; this is the responsibility of a registered medical practitioner. However, many members have a 'gift' of diagnosis and of discovering dysfunctions in the physical, emotional, mental and spiritual aspects. In this case the member may make mention of any disorder which he may discover, and advise the client to see her/his doctor for a medical diagnosis and record this action on the client’s records.
17. Members must not use titles or descriptions to give the impression of medical or other qualifications unless they possess them and must make it clear to their clients that they are not medical doctors and do not purport to have their knowledge or skills.
18. Members are forbidden to diagnose, perform tests on or treat animals in any way, unless specifically qualified, or give advice following diagnosis by a registered veterinary surgeon or to countermand her/his instructions.
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Deetee said:
Over on open2.net forums on this thread I had a little run in with Jill Pay, self proclaimed homeopath and Reiki "master", and member of Acorn to Oak.
As a straw man argument she raised the Glasgow girl who had a mistaken radiotherapy overdose for her brain tumour as an example of bad orthodox medicine, which as we all know just treats "symptoms".
I suggested that tragic as it was that she got an overdose, at least the radiotherapy had cured the tumour, and what would she have preferred - Reiki or radiotherapy?
Her response was
Go figure.

ETA - I have just been reviewing the "code of practice" under which these practitioners function. I don't know whether to laugh or cry.
Is this an admission they can't cure people?
Click to expand...

Jill Pay: "Don't assume I don't know what I'm talking about just because you disagree with my viewpoint - that is insulting to my intelligence"

No, dear, it's because you are talking crap that we choose to insult your intelligence.

From within that thread, they are saying that the radiation dose 1.5 times the correct amount. Is that really biologically significant? Most biological dose-response curves are logarithmic so a 50% overdose is actually quite marginal.
 
Deetee said:
Her response was
Firstly I would say that I see the tumour as a symptom - not a cause of symptoms. Treating the tumour "effectively" with radio- or chemotherapy does not treat the underlying cause of the cancer.
Click to expand...
Go figure.
Click to expand...

I can't believe you didn't go after her on that one. I mean, if she could identify, let alone treat, the "underlying cause of cancer", she could get very rich and win at least one Nobel Prize. I mean, the tumour is the cancer, so getting rid of it gets rid of the cancer - assuming it hasn't metastasized. Or is my understanding of medicine wrong?

Edited to correct clumsy quoting.
 
Badly Shaved Monkey said:
From within that thread, they are saying that the radiation dose 1.5 times the correct amount. Is that really biologically significant?
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That's what she said, but I think it was quite a lot more than this actually. It appears the chance of long term radiation damage to her brain would be quite significant.


jon said:
I can't believe you didn't go after her on that one.
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I did let it drop, because I was pretty busy with other things that day, but you are right, I should have.
 
The tumor is a symptom?

here's to hoping this idiot doesn't have any "symptoms."
 
fowlsound said:
The tumor is a symptom?

here's to hoping this idiot doesn't have any "symptoms."
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Even if it were true that the tumor is a symptom of something else, that's a pretty p*** poor basis for policy if the symptom kills you before you get a chance to flush out the underlying cause.

Sir, we've determined that your cardiac arrest is a symptom of bad diet, so instead of CPR we're going to give you a brochure on the benefits of oat bran.
 
What is an example of their claimed "underlying cause"?? I can only imagine that they figure getting rid of "toxins" will just cure the cancer without chemo or radio?

Healing energy hey? Energ healing flow hey? Why all the time wasted on fantasy wishful flimsy? Power of Placebo? Oh yeah, wish your cancer away. That works great. Wish wish wish.
We are all entitled to our own view of the world; there is no place or need to be divisive or polarise our position to make a point
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Using that excuse to kill people with flights of fancy and reiki for cancer.

These people figure if you can think it up, then it must be true. Flying pigs.

Oh frac, she brings up Sheibner, Sheibner the ignorant geology bent spoon award freak that misleads the brainless that don't check facts. Typical. Just Typical.
 
Eos of the Eons said:
Oh frac, she brings up Sheibner, Sheibner the ignorant geology bent spoon award freak that misleads the brainless that don't check facts. Typical. Just Typical.
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Yup, good old Viera.....as much medical common sense in her whole body as my son's pet tortoise.
:faint:
 
Deetee said:
As a straw man argument she raised the Glasgow girl who had a mistaken radiotherapy overdose for her brain tumour as an example of bad orthodox medicine, which as we all know just treats "symptoms".
I suggested that tragic as it was that she got an overdose, at least the radiotherapy had cured the tumour, and what would she have preferred - Reiki or radiotherapy?
Her response was
Firstly I would say that I see the tumour as a symptom - not a cause of symptoms. Treating the tumour "effectively" with radio- or chemotherapy does not treat the underlying cause of the cancer.
Click to expand...
Go figure.
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What is it with these people, that they latch on to every report of an accident from real medicine as evidence that they can do something? This was news. Because it was an accident. The scores of people cured of their cancers successfully without any accidents every month don't make the news because they're routine!

Hey, if reiki ever cured anyone, ever, now that might be news!

OK, so radiotherapy (and chemotherapy and surgery) don't treat the cause of the cancer. Can she?

(I like the bit about the pamphlet on the benefits of oat bran!)

Rolfe.
 
Hey Fowlsound,

I just recently joined the forum. I know about zero about medicine, but am grateful for modern medicine and hope it continues to work for you. I reach your paper and it was powerful. Can we quote it freely?

(P.S., off topic, but I support stem cell research. I hope to live long enough to develop dementia.)
 
Rachel1031 said:
Hey Fowlsound,

I just recently joined the forum. I know about zero about medicine, but am grateful for modern medicine and hope it continues to work for you. I reach your paper and it was powerful. Can we quote it freely?

(P.S., off topic, but I support stem cell research. I hope to live long enough to develop dementia.)
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Quote all you like! Glad you liked it.



PS I agree with you.
 
Hi fowlsound,
Can you tell us a little more about the actual hardware? It looks like a Medtronic product.


This is a specialized field, but links a lot of different technical and medical disciplines to make it all happen. This short article describes what happens for a lot of semi-custom medical devices:

linky
 
Foulsound...

You were among the first members here to welcome me to the boards (technically, the 4th one... but I am sure you would have been the 1st if you weren't out late that night shaving wombats with a rusty razor. By the way, Tim, that reverse mohawk he gave you really looks good on you. No, seriously. Ick...):p

I want to offer you my most sincere hopes for a full and speedy recovery. Whenever you hear the Garth Brooks song "Friends in Low Places", think of me.:)

Big hugs,

Jen
 
fowlsound, I must add a note of support after reading your paper, this thread and some of your blog.

I thought you seemed a cool guy just from your posts here, but after finding out you are coping with all this so - what's the word for "gracefully with appropriate anger"? - I am blown away with respect.

Sorry to seem to gush, but please know you have significantly affected me, and it would seem, others. I will follow your progress with good wishes and confidence in your treatment.

Wondering if the sound this fowl makes when meeting sCAM practitioners is "Quack!!! Quack!!!"...
 
Wow. Thanks guys! lessee...

Kopji: I don't know who specifically made it. I can sure find out though. I was only told it was titanium. I know the bone graft to rebuild height was surrounded in a titnaium cage, and that is probably very similar to the products described in your link. I would not be surprised if it was Medtronic, though.

Orangutango: Thanks so much. :) Recovery at this point is really only watching to see it doesn't come back and maintaining the dull aches I get from time to time. I am walking without pain and without assistance, and I can run (the guys that mugged me for my laptop a few months ago got a good chase before they slipped away.) Thank you for your thoughts.

orphia nay: You made my day. Thank you. I have tried to maintain as positive as I can be, and yet still as expressive enough as to get the sCAM folks to know to leave me alone. I would like to think I was graceful, but there are many nights over the past few years that were filled with swearing and anger and tears. It gets easier to cope with cancer once you hit the remission phase, but I still fear a return of systemic myeloma. When that comes, rest assured I will place all my efforts into therapies that are proven to treat cancer. There are a couple new drugs like Revlimid and Velcade that are very promising. Multiple Myleoma is not as well documented and studied as other cancers. I will update my blog and this forum with new writing on my progress as it happens. For now, I am on a hiatus waiting for the next round of tests and bloodwork and bone marrow biopsies to check for recurrence.

You friend in battle of woo and cancer:

FS.
 
fowlsound said:
Wow. Thanks guys! lessee...
Kopji: I don't know who specifically made it. I can sure find out though. I was only told it was titanium. I know the bone graft to rebuild height was surrounded in a titnaium cage, and that is probably very similar to the products described in your link. I would not be surprised if it was Medtronic, though.
You friend in battle of woo and cancer:
FS.
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The technology in your spine is really amazing. Not as amazing as the real thing but still pretty good. Not everyone does well mentally with major surgery like this, so give yourself some major credit too. Not very many people feel comfortable enough about these things to post their cat scans on the internet. :)

I only ask because the company that made it might really like to hear from you. (your doc would know) Due to privacy laws they only know you by a case number. There are probably hundreds of people who worked on it as a project without ever hearing or seeing the end results of their effort.
 
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