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"Bye-Bye" PCa, well "Hello" ALS/MND!

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Posted 11/7/2015 4:10 AM (GMT 0)
Saw my URO a few weeks ago and he was pretty pleased with my 2 year post operation progress. My PSA is still < .01, continence is good and ED is history. He mentioned that I could be the poster child for someone who has had “successful” surgical intervention for an aggressive G9 cancer. I agreed! Then I told him I was recently diagnosed with ALS/MND. He was visibly shocked!

Right now I'm reading up on treatments and why Rilutek (made from photographic developer) appears to be the only approved drug that works (stats == extends life by TWO months).

A luta continua = “the fight goes on!”
Posted 11/7/2015 4:48 AM (GMT 0)
Wow, we never know what is just around the corner.

So sorry to hear this PSA. That is a rough deal.

We must hope that progression is slow and you can get the most out of life in the meantime.

All the best

Chas
Posted 11/7/2015 4:55 AM (GMT 0)
As you said . continue the fight Is this the same as what Michael Fox has? Thats a real kick in the gut! Very sorry this came your way!
Posted 11/7/2015 6:24 AM (GMT 0)

logoslidat said...
As you said . continue the fight Is this the same as what Michael Fox has? Thats a real kick in the gut! Very sorry this came your way!

No, Michael Fox has Parkinsons disease. Not nice, but probably preferable to ALS/MND.
Posted 11/7/2015 6:43 AM (GMT 0)
Well now, that's just NOT fair. So sorry. shakehead
Beth
Posted 11/7/2015 8:09 AM (GMT 0)
Logos, MND is BAD! I'd swap PCa anyday!

Beth, this is the way some things work out. A mate of mine had a heart attack last Christmas and he was told to exercise more. So he started riding a bike to work; a few months ago he got "totalled" by a truck at a traffic light. He died instantly!

You just never know!
Posted 11/7/2015 10:35 AM (GMT 0)
ALS is what Steven Hawking has. THAT is a kick in the teeth, to be sure. Live as hard as you can, as much as you can, for as long as you can.
Posted 11/7/2015 11:47 AM (GMT 0)
PSA3Dot7- sounds like you beat PCa. Stay strong my friend. I am sorry about your new challenge.
Posted 11/7/2015 3:35 PM (GMT 0)
Wow! PSA, this is truly unfair. Live as much as you can. You are in my thoughts and prayers.
Posted 11/7/2015 3:43 PM (GMT 0)
So sorry you have to deal with something else.

Andrew
Posted 11/7/2015 4:13 PM (GMT 0)
I know what ALS stands for. What is MND?

So sorry to read this.

Mel
Posted 11/7/2015 4:14 PM (GMT 0)
So sorry to hear this news PSA. Really tough to take, can only imagine how you must feel.
Enjoy every day, and remember that where there's life, there's hope. I'm sure new treatments are in the pipeline, let's all keep,our fingers crossed.
Posted 11/7/2015 4:17 PM (GMT 0)
Stephen Hawking has had ALS for decades. In that time, he has contributed immeasurably to our knowledge of our universe. He's a shining example that the diagnosis isn't the end.
Posted 11/7/2015 4:22 PM (GMT 0)
Never mind. Google tells me all.

Motor Neuron Disease. That's the general term and ALS is one of the MND diseases

Mel
Posted 11/7/2015 6:14 PM (GMT 0)
Very sorry to hear this, fight and enjoy everyday...
Posted 11/7/2015 10:30 PM (GMT 0)
Dear PSA3DOT7,

Really thinking of you right now --- hope that you will find courage and strength and hope.

Mindful of your journey right now --- you truly have my thoughts and prayers as I send this across the miles.

Stay close with all your family and friends right now ... and we are all here to support you.

Sent with caring thoughts,
Cyclone
Posted 11/7/2015 11:00 PM (GMT 0)
Being diagnosed with ALS is very bad and you have my complete empathy as you deal with this new illness. You've gone from the purgatory of G9 to the hell of ALS. I hope that you are one of the outliers who survives and beats this. You are in my thoughts.

Take care and hang in there.
Posted 11/8/2015 12:26 AM (GMT 0)
Man oh man, I'm so sorry to hear this. Sometimes you think you've drawn your one bad health card in life and then you get another one that's such a shock like this. Frankly, I don't think I could even imagine this.

My wife and I are throwing tremendously good thoughts your way and we wish you all the best. Be strong.
Posted 11/23/2015 8:25 AM (GMT 0)
I've recently upgraded to a "walking stick" and now a Walker! Interesting days ahead!

ENJOY EVERYDAY FOLKS!
.
Posted 11/24/2015 1:07 AM (GMT 0)
Thanks for checking in with us. You are right that every day counts and should be fully lived. Take care, hang in there and keep in touch
Posted 11/26/2015 7:12 PM (GMT 0)
The whole "seeming to beat one" and then slapped down by something worse is a real kick in the nuts.

I wish you the best and I can certainly empathize on some level.

I have told some people that PCa helped me to prepare for this next diagnosis. I was able to process a lot of feelings, deal a lot with the fear of death thing, think about where my family would end up without me, think about what I would miss, etc.

This time around, my new fear is the slow of a painful lingering death, and ALS is another disease that can cause this. My thoughts are with you. I wish there was more I could say or do.


Damon
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