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Radiation Offers New Cures, and Ways to Do Harm

John23
Posts: 1832
Joined: Jan 2007

 

"As Scott Jerome-Parks lay dying, he clung to this wish: that his fatal radiation overdose — which left him deaf, struggling to see, unable to swallow, burned, with his teeth falling out, with ulcers in his mouth and throat, nauseated, in severe pain and finally unable to breathe — be studied and talked about publicly so that others might not have to live his nightmare. "

 

Read the full NYT story here:

http://www.nytimes.com/2010/01/24/health/24radiation.html?ref=us&pagewanted=all&_r=0

 

 It's better to be aware, than to be complacent.

 

Best of health,

 

John

steved
Posts: 836
Joined: Apr 2004

Considering others recent posts that have commenced justprior to you posting this I would ask you to consider whether this is a well timed, helpful and accurately thoughtful post.

I personally don't think it is, sorry.

Steve

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

While I've had to pay a very heavy price for doing radiation in the rectum - liver - and lung...

It's no doubt come with a high prices...but it has added longevity and helped play a role in my 9-year survival...

That's the real story that needs to be told...

coloCan
Posts: 1840
Joined: Oct 2009

Any body up on current radiation therapy? There's always fine-tuning going on

annalexandria's picture
annalexandria
Posts: 2182
Joined: Oct 2011

just about everything we do has a price!  Cancer ain't no walk in the park.  Surgery, radiation, chemo, the alternative stuff like hyperthermia...they all have side effects, some very long lasting.  But we're at least here to ***** about those effects, and that's something.  As you yourself have said, John, TCM (if it works) is not for those emergency situations that so many of us find ourselves in when dealing with cancer.  That's when the big guns have to come out, and yes, sometimes the results are pretty horrendous.  But so is dying from cancer, which we are all trying our best to avoid.  Just to counter this story, since we're just trading in anecdotes here. I have a friend with stage 4 esophageal cancer who ended up spending two months in the ICU as a result of chemo and rads.  He still has tons of difficult side effects.  But he's still alive and NED for the moment, nearly three years later.  That's a story with similar features to the one you chose to post, but with a very different outcome.  There's a story for everything...it's how things look in the aggregate that actually matter.  AA

ETA that CSN won't let me say the word that technically means a female dog.   How does CSN know which one I mean?

PhillieG's picture
PhillieG
Posts: 4659
Joined: May 2005

is a waste of time & energy...

Goldie1's picture
Goldie1
Posts: 250
Joined: Sep 2011

like most other medical treatments, has risks. Is it a risk that people are willing to take?  That depends on each person and how well versed they are on possible/future issues that may arise from such treatment.  Does that mean that if they decide they want radiation, it is to be complacent?  Because they have found out they have cancer and it is one of the first lines of treatment that is widely recommended?  That they follow blindly because they are frozen with fear and just following doctors orders?  Maybe, but shouldn't that be the decision of the person who is comtemplating such treatment?  And, how about the articles concern with radiation overdose.  Yes, very scary but rare, and hopefully oversight, whether it be the equipment or human error, has improved over the last 3 years. 

My husband has had the max allowed and will never have another radiation treatment again.  Would he do it all over again if it was the beginning of his treatment?  YES!  Did he have issues from the radiation?  YES!  Did it overall improve his quality of his life?  YES!  Was it worth it in totality? YES! 

Even if we had read this article at the time of his first treatment, he would have still done radiation and I would have supported his decision every step of the way.  

Ellen

 

 

John23
Posts: 1832
Joined: Jan 2007

 

Perhaps the following CSN forum should be banned:

http://csn.cancer.org/forum/169#new

 

It’s better to know as much as you can prior to doing something, than to regret a poor choice later. You can’t make an informed choice without being informed.

 

Best of health to all,

 

John

annalexandria's picture
annalexandria
Posts: 2182
Joined: Oct 2011

is that one horror story does not offer much useful information for people making difficult treatment decisions.  It's as if someone is wondering if they should get in the car and go for a drive, and someone else says "Don't do it!" because this guy he knows got in a terrible accident one time (shares gory details).  Most of us wouldn't decide to never ride in a car again despite having a scary story inflicted upon them.  Still gotta get down that highway, ya know...

ETA  I personally have intense chemo-induced joint pain and the most erratic digestive system imaginable.  But I'm alive, and NED, despite being declared basically terminal two years ago.  It's not like we're a bunch of happy, symptom-free campers around here who are clueless of the potential for long-term side effects, so what's the point exactly of linking to that forum?

John23
Posts: 1832
Joined: Jan 2007

 

Sometimes we don’t take things seriously enough without being pushed into taking it more seriously.

 

Those horror stories are not “rare”. The individuals are not trying to scare anyone, or make things seem worse than they are. The stories on that forum have been posted because those that have (or are) suffering from treatments, seriously desire to save someone else about to make the same choice, or at least cause them to question the absolute need for it.

 

If it raises awareness and makes people think a little harder about what they’re about to do, isn’t it worthwhile?

 

Maybe I’m wrong…

 

 

 

Wishing you the best,

 

John

PhillieG's picture
PhillieG
Posts: 4659
Joined: May 2005

"It’s better to know as much as you can prior to doing something, than to regret a poor choice later. You can’t make an informed choice without being informed."

Let's post stories/articles about botched surgeries! Or maybe post long-term horror stories in the proper forum. I know it's probably not as much fun...

Goldie1's picture
Goldie1
Posts: 250
Joined: Sep 2011

4 months after radiation ended, Pat was bleeding/clotting/burning every time he urinated.  He had to have a bladder biopsy.  He had radiation cystitis of the bladder.  He had to have blood transfusions.  He was admitted to the hospital because it got so bad.  He was referred for Hyperbaric Oxygen Therapy to control bleeding.  Had 35 sessions of Hyberbaric and bleeding finally stopped.  We were both well aware that this was a possibility and may be so in the future. 

Radiation shrunk the tumor enough to make surgery possible.  

End of story...

Ellen

steved
Posts: 836
Joined: Apr 2004

SensationalSensational headlines and collections of extreme  anecdotes is what sells paper. That does not mean iT is the best way to inform people who in a terrifying position of facing their first ever radiotherapy decisiOn. In combination with your description of an anecdote of a woman dying of radiotherapycomplications which you describe as 'not rare or uncommon' I worry that it is not the type of information that really helps people make informed decisions. Yes, describe your experience of radiotherapy (not certain if you have had it), yesstate the side effects and the rates atwhich  they occur but please steer away from scare mongering that does nothing to add to intelligent conversation trubrit has triggered.

Steve

John23
Posts: 1832
Joined: Jan 2007

 

 

How to you inform others of the pitfalls of any treatment without having it being called: “collections of extreme anecdotes”? Is there a way to do that?

 

Is there any way to describe, or give example to, the possibly serious and permanent ramifications of a specific therapy without it being called: “collections of extreme  anecdotes”?

 

If one did not fully realize the long-term ramifications prior to taking the medication, does it make the long-term ramifications non-existent? Does that person feel less robbed of a quality of life that could have been had?

 

The long-term effects aren’t usually noticed until several years have passed. Those that have just had radiation therapy seriously have no idea what the future might bring. Why not know ahead of time, what others have experienced after years of remission of cancer? Why not have a chance to fully think through, what one is about to do? Why not ask if there’s any other possible way to resolve the immediate problem?

 

Burying one’s head in the sand, does not resolve any problems, nor does it afford any comfort if and when the problems surface and you’re told that it’s a permanent situation.

 

As far as I understand, this forum is for the sharing of information, good and bad.

 

I would prefer to know if someone’s suffered long-term side effects from a specific herb I’m about to take, than to just hear good-time tales of glorious satisfaction. I can then take the “bad story” and check to see if there’s others.

 

I would prefer to be fully informed. If I’m alone with that mentality, then perhaps I should abandon this forum altogether.

 

I’m not here to insult anyone’s choice of treatment. But sharing information should not be considered that.

 

When medical treatments are taken as seriously as some sort of religious doctrine, we are truly in trouble.

 

Health matters; I sincerely wish you the best!

 

John

Aud's picture
Aud
Posts: 476
Joined: Oct 2009

This 2010 NY Times article is about the results of over-radiating, through human error, either directly from humans or the computers and programs created by them.  We are all human.  We all make mistakes, even terrible ones like this.  And what we as a society needs to do is to learn from that as humble Mr. Jerome-Parks and his wife has taught us.  I thought of such errors when I was receiving radiation treatment for rectal cancer in 2009; still, I chose to have the treatment as, at that time, it seemed the best chance of successful treatment. 

The expected side effects, both short term and long term, of correctly administered radiation treatment is another matter.  I suppose those side effects and traumatic over-radiation could fall under the term "radiation damage" but they are different.  One is a result of correctly administered treatment and the other is an unacceptable incident.   What I mean by unacceptable is that we should do all we can to prevent it from happening.   Hopefully, we have become better at making less of these mistakes no matter how rare.

I wonder if anyone has critically asked questions or has done any research on this. 

Holding all of us in the Light for continued healing, both body and spirit.

~Aud

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