Michael Douglas has cancer

Kent Cass

RushFan said:

Please...
Somebody...please send a link to this thread to all major news outlets. My wife and I are laughing our off.

A Poll?
Anybody notice a Burger King double-Whopper as tasting a little funny during the Cisplatin/FU5 times? Happened to me, once, and I blamed the cook- but now I'm really wondering...Anybody?

kcass

rush1958

Kent Cass said:

A Poll?
Anybody notice a Burger King double-Whopper as tasting a little funny during the Cisplatin/FU5 times? Happened to me, once, and I blamed the cook- but now I'm really wondering...Anybody?

kcass

On to something
You know...... I think you may be on to something.....

micktissue

Kent Cass said:

A Poll?
Anybody notice a Burger King double-Whopper as tasting a little funny during the Cisplatin/FU5 times? Happened to me, once, and I blamed the cook- but now I'm really wondering...Anybody?

kcass

Poll II
Anyone lose hair during treatment?

(report quoted Dr as saying “In general the chemotherapy treatments for head and neck cancers do not make you lose your hair”)

Kent Cass

micktissue said:

Poll II
Anyone lose hair during treatment?

(report quoted Dr as saying “In general the chemotherapy treatments for head and neck cancers do not make you lose your hair”)

Yep
I cut my moustache off. That counts, don't it?

kcass


(Sorry- I couldn't help it)

miccmill

Kent Cass said:

Yep
I cut my moustache off. That counts, don't it?

kcass


(Sorry- I couldn't help it)

Hair loss?
I'm sitting here looking at Glenn who has nary a hair on his head or face! Not totally gone but you can count the few that remain.

And he had Carbo/Taxol for Chemo.

“Treatment can temporarily affect the voice because radiation can irritate the throat"

Levon Helm has some experience with the "temporary" effects that radiation has on the voice. It was 10 years before he sang again.

Hal61

Kent Cass said:

A Poll?
Anybody notice a Burger King double-Whopper as tasting a little funny during the Cisplatin/FU5 times? Happened to me, once, and I blamed the cook- but now I'm really wondering...Anybody?

kcass

Funny Taste
I noticed that Kent, still do in many ways including the amazing "disappearing" taste. I thought it was just me. I now believe all food has been slightly tainted, but only the H&N people have noticed. Given the medical opinions on Michael Douglas, I believe this makes sense.
Hal

RushFan

Hal61 said:

Funny Taste
I noticed that Kent, still do in many ways including the amazing "disappearing" taste. I thought it was just me. I now believe all food has been slightly tainted, but only the H&N people have noticed. Given the medical opinions on Michael Douglas, I believe this makes sense.
Hal

Saving on Shave Cream
I continue to save on Barbosol. No mas whiskers on my neck or under my chin. I had hair loss on the back of my head near the colar line from the rads. Mostly grown back...but thicker...and makes the hair above look thinner!

Gifts that keep on giving.

kimmygarland

RushFan said:

Saving on Shave Cream
I continue to save on Barbosol. No mas whiskers on my neck or under my chin. I had hair loss on the back of my head near the colar line from the rads. Mostly grown back...but thicker...and makes the hair above look thinner!

Gifts that keep on giving.

I Wish the Man
I wish the man the best, but the media is ridiculously under reporting the krap that goes on with the treatment of this cancer.
Someone mentioned sending this thread to news outlets - that's the best idea I've heard in a while.

Has anyone mentioned the mucus and horrible spitting? The neck burns? The metal taste? Like all of you, I could go on FOR DAYS!

Argh.

Hal61

micktissue said:

GRRR - can we get an interview with a HNC survivor please?
http://www.foxnews.com/story/0,2933,599668,00.html

Some choice quotes:

"Some side effects that Douglas may experience from his chemotherapy and radiation treatments include fatigue, nausea, pain when swallowing, change in taste and skin reactions like dryness around the neck ... all of these symptoms are temporary."

Temporary means what? A few weeks or a year from end-of-treatment? The difference is significant.

“In general the chemotherapy treatments for head and neck cancers do not make you lose your hair”

Hands up: how many lost hair to either chemo or radiation? My hand is up.

“Treatment can temporarily affect the voice because radiation can irritate the throat"

Yeah my throat got irritated alright. Like I drank Draino.

Nothing at all about HPV.

Mick

"Bulldog" micktissue
Thanks to everyone for commenting on this, especially Mick for sending emails. I think it's very interesting stuff and will be writing some letters myself. I might borrow Mick's question, "Temporary Means What?," or "Temporary Says Huh?" since a good bit of my hearing is gone due to treatment, and I've been assured it's not "temporary."

The press and the public face of the medical world would have us believe that those in remission have fought the fight and, for the time at least, won. Feels good. We know that some of us do return to a near normal that deserves the tag, but some of us suffer lingering or permanent side effects to treatment. H&N survivors are not alone in this, but we can experience a undue amount of collateral damage. When the press puts a happy face on it, we all lose. Researchers and doctors need to be aware of the "recovery" experience so they will be more diligent and forthright. If my hearing had been monitored more intelligently, for example, I might have been given the choice to opt for Carboplaten on the third leg of my chemo, instead of Cisplaten. But I wasn't because, the loss of hearing is considered to be an acceptable side effect, not even worth mentioning in the Douglas coverage.

Doubtless we've come a long way in the battle against cancer, but the battle to recognize the effects of treatment on quality of life has been ignored.

Hal


Hal

Kent Cass

kimmygarland said:

I Wish the Man
I wish the man the best, but the media is ridiculously under reporting the krap that goes on with the treatment of this cancer.
Someone mentioned sending this thread to news outlets - that's the best idea I've heard in a while.

Has anyone mentioned the mucus and horrible spitting? The neck burns? The metal taste? Like all of you, I could go on FOR DAYS!

Argh.

A List
Perhaps someone should compile a list of all the symptoms and side-effects we have come to know, and send that list to the good Dr.- including those during treatment. Scalding of the tongue was my favorite, next to the mouth sores that extended out to below my lower-lip, and resulting gum loss that's exposed bone here and there...etc., etc.

Reckon, though, that the Today report was only meant to be a superficial report that just barely touches upon the reality of H&N, and treatment. I think most Oncos and Rads know how negative things can be for awhile, and some of the side-effects and damage of treatment can stay with us for quite awhile.

kcass

Fire34

rozaroo said:

Treatment
My medical Oncologist mentioned to me that once treatment started I would feel like I had been in a bad Accident. He got that right!

Treatment Also
Roza
My rad oncologist said pretty much the same thing , his exact words. "when it get done with you your gonna feel like a piece of s&*(". Same thing here he was not kidding LOL
Dave

Bigfuzzydoug

Well Michael Douglas and I now have 4 things in common!
1. We're both good lookin' dudes.
2. We both have smokin' hot wives.
3. He played a multi-billionaires bad guys in a movie, I was one.
4. We both have H&N cancer.

Imagine that?!

D Lewis

Bigfuzzydoug said:

Well Michael Douglas and I now have 4 things in common!
1. We're both good lookin' dudes.
2. We both have smokin' hot wives.
3. He played a multi-billionaires bad guys in a movie, I was one.
4. We both have H&N cancer.

Imagine that?!

Wow, Bigfuzzydoug
This is so much like the infamous "Kevin Bacon Game" of seven degrees of separation. Perhaps we should invent the "Michael Douglas Game" for Head/Neck Cancer patients?

Deb

staceya

D Lewis said:

Wow, Bigfuzzydoug
This is so much like the infamous "Kevin Bacon Game" of seven degrees of separation. Perhaps we should invent the "Michael Douglas Game" for Head/Neck Cancer patients?

Deb

....and I look just like
....and I look just like Catherine Zeta Jones--oh wait, I mean I WISH I looked like Catherine Zeta Jones. Actually, these days look more like her grandmother..or Mr Douglas for that matter..

Pam M

GraceLibby said:

Flu-Like Symptoms?
No where in reading about H1N1 did I read anything about having a PEG installed in case of "flu-like symptoms". LOL!

Flu Like Symptoms
I dunno about you guys, but if those are flu-like symptoms, I'm camping out at my doc's to get a bleeping flu vaccine.

sweetblood22

staceya said:

....and I look just like
....and I look just like Catherine Zeta Jones--oh wait, I mean I WISH I looked like Catherine Zeta Jones. Actually, these days look more like her grandmother..or Mr Douglas for that matter..

They need to be more honest and more real.
I am emailing as well. I am really getting sick and tired of people wondering why I'm not eating and why I am not back to work yet and why I am still in so much pain. I am tired of hearing about so and so who had radiation (for breast cancer) and John doe who had more rads than me (for prostate cancer) and uncle fill in the blank who had rads and chemo ("you didn't even have chemo" they day to me) and they are all fine now. Gaahhhhh!! They just do not get it.

I lost a third of my hair from the radiation. I wasn't prepared for that. And it got really thin where I had hair. Fell out in clumps. From the tops of my ears down I was bald. Mouth sores like I drank acid. Did not eat not one thing. Not one. From April 20th, 2009 to mid January 2010. Yeah. Flu like. Ridiculous.

All I can say is I wish I knew the full story before I started treatment. I really hope Michael Douglas does well and gets thru with minimal side effects. I wish those of us who have been thru so much pain could have some way endured it so that others after us would not suffer as much.

sweet

Kimba1505

sweetblood22 said:

They need to be more honest and more real.
I am emailing as well. I am really getting sick and tired of people wondering why I'm not eating and why I am not back to work yet and why I am still in so much pain. I am tired of hearing about so and so who had radiation (for breast cancer) and John doe who had more rads than me (for prostate cancer) and uncle fill in the blank who had rads and chemo ("you didn't even have chemo" they day to me) and they are all fine now. Gaahhhhh!! They just do not get it.

I lost a third of my hair from the radiation. I wasn't prepared for that. And it got really thin where I had hair. Fell out in clumps. From the tops of my ears down I was bald. Mouth sores like I drank acid. Did not eat not one thing. Not one. From April 20th, 2009 to mid January 2010. Yeah. Flu like. Ridiculous.

All I can say is I wish I knew the full story before I started treatment. I really hope Michael Douglas does well and gets thru with minimal side effects. I wish those of us who have been thru so much pain could have some way endured it so that others after us would not suffer as much.

sweet</p>

The Media is. Like I said in my first post on this thread...Mike Douglas is as human as the rest of us, and his wife and children are just as scared right now as our loved ones have been/are.
They are going to go through it...no doubt...and we all know some have the hardest of times and seem to have every side effect possible, and there are those who have few, and then there is everything in between.

That said, it would be great if there was some accurate reporting on this cancer, independent of Mike Douglas, I imagine he would like to step out of the spot light for a year or so.

I think everyone on these boards, directly affected with cancer, caregivesrs, and loved ones, can post the effects they have had (temporary and permenant). I also think the fact that people can lose the battle due to malnutrition because the inability to eat becomes so severe.
There is the physical fall out, the emotional fall out, the relational fall out, the career fall out, the financial fall out, the pleasure fall out, the self image fall out....am I missing any???? All of these could be headings with a multitude of examples listed under them.

We all know that treatment for any cancer sucks; but it is no secret that the treatment for Head and Neck cancer is one of the worst, if not THE worst. You all deserve some acknowledgement for what you have been through.

You all are amazing people who have and are fighting for you life...it is unfortunate that these media outlets have minimized your battle and your wounds by their fluffy reporting.

Love, Love, Love,
Kim

davidgskinner

Kimba1505 said:

The Media is. Like I said in my first post on this thread...Mike Douglas is as human as the rest of us, and his wife and children are just as scared right now as our loved ones have been/are.
They are going to go through it...no doubt...and we all know some have the hardest of times and seem to have every side effect possible, and there are those who have few, and then there is everything in between.

That said, it would be great if there was some accurate reporting on this cancer, independent of Mike Douglas, I imagine he would like to step out of the spot light for a year or so.

I think everyone on these boards, directly affected with cancer, caregivesrs, and loved ones, can post the effects they have had (temporary and permenant). I also think the fact that people can lose the battle due to malnutrition because the inability to eat becomes so severe.
There is the physical fall out, the emotional fall out, the relational fall out, the career fall out, the financial fall out, the pleasure fall out, the self image fall out....am I missing any???? All of these could be headings with a multitude of examples listed under them.

We all know that treatment for any cancer sucks; but it is no secret that the treatment for Head and Neck cancer is one of the worst, if not THE worst. You all deserve some acknowledgement for what you have been through.

You all are amazing people who have and are fighting for you life...it is unfortunate that these media outlets have minimized your battle and your wounds by their fluffy reporting.

Love, Love, Love,
Kim

Right on, Kimba
It is degrading and frustrating when "respected outlets of truthful reporting" minimize, warp and mis-report what we all KNOW to be the truth. But it is not surprising. I think they do that with many things, not just H&N cancer. That is the great power of the internet and message boards like this. It connects real people to each other to exchange ideas and thoughts and truth and sidestep these media outlets. Then we see them for what they are: filters.
Can you imagine if you had been through all you have been through with this cancer, and had no contact with others like we find on this board and saw that reporting about Mr. Douglas? How awful and miserable would you feel? Like you were faking it or somehow an outlier.
We should definitely call BS on shoddy and lazy reporting, but also expand and support the real truth outlets.
(How's that for a soapbox speech? I feel much better now)

Kimba1505

davidgskinner said:

Right on, Kimba
It is degrading and frustrating when "respected outlets of truthful reporting" minimize, warp and mis-report what we all KNOW to be the truth. But it is not surprising. I think they do that with many things, not just H&N cancer. That is the great power of the internet and message boards like this. It connects real people to each other to exchange ideas and thoughts and truth and sidestep these media outlets. Then we see them for what they are: filters.
Can you imagine if you had been through all you have been through with this cancer, and had no contact with others like we find on this board and saw that reporting about Mr. Douglas? How awful and miserable would you feel? Like you were faking it or somehow an outlier.
We should definitely call BS on shoddy and lazy reporting, but also expand and support the real truth outlets.
(How's that for a soapbox speech? I feel much better now)

Davidgskinner...
excellent soap boxing! It feels good to speak up and speak out...empowering. I am going to try to find the Today Show website and direct them to these message boards.

Skiffin16

micktissue said:

Poll II
Anyone lose hair during treatment?

(report quoted Dr as saying “In general the chemotherapy treatments for head and neck cancers do not make you lose your hair”)

New Topic, "No Hair Photos"...LOL
Mick,

We can make a new topic if you like.

No Hair Photos, I'll be first to stick mine here..let me know if you like the idea, LOL....

Here's mine with two of my Best CareGivers ~ Kali & Jasmine

John