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jerryskids

I have Cancer :/ -- still doing well

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Also to be clear to all, the good part is no surgery complications.  The bad part of not getting it all might leave me choosing which type of shiot sammich I want, but we're still collecting data at this point.

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Haven’t been here for awhile... but this is horrible news to come back to. :(

Looks like everything’s already been said, so I’ll just wish you a speedy recovery.

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13 hours ago, fandandy said:

He did,  He said we get first crack at her if he doesn't pull through the surgery.  I'm excited.  :)

That's kind of him. I like Jerry's wife. I'm still rooting for Jerry to pull through though since I'm happily married already. 

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Glad to hear that the surgery went well...hopefully you get a good prognosis on the rest of the tumor they couldn't carve out!

Here's to a quick recovery and healing so you can get back to sucking some good Ds!

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Do you guys even read what he types?  Why exactly is it awesome that they couldn't remove all the cancer?  

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5 minutes ago, fandandy said:

Do you guys even read what he types?  Why exactly is it awesome that they couldn't remove all the cancer?  

I was thinking that also. Now Skids has to deal with Chemo or whatever they come up with. Good luck Skids.

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Sending you tons of good thoughts, Jerry. 

Sucks that they couldn't get all of the tumor, but I am sure you have a great team working with you on this and what's next. Speedy recovery, and hope you do well. ❤️ 

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2 hours ago, fandandy said:

Do you guys even read what he types?  Why exactly is it awesome that they couldn't remove all the cancer?  

Sorry about that, I got confused and thought we were rooting against the surgeon.  :doh:  Will adjust moving forward.  :thumbsup:

Continued best wishes, Skids.  :cheers:

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Best wishes skids, that's scary stuff. Hope you recover fully. 

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First of all, thanks to all for the continued good thoughts, and I'm happy to see some old friends from other parts of the internets dropping a note.  :cheers:

TL;dr -- Surgery got most but not all of the tumor.  Next step is either more surgery or radiation/chemo.  We'll know more in a few weeks.  We are still long-term optimistic, although there may be a "new normal."

I'm home now and typing on a keyboard so I can provide a little more detail.  Basically, the surgery wasn't really a success.  They got the main tumor/blockage out of my throat so I'm breathing much better, but it goes to places which prohibited them from getting it all with this particular surgery (laser from the inside).  Had they been able to get it all, they'd have also taken out the lymph chains on both sides, hence a much longer surgery.  I'd also have ended up with a feeding tube for a few weeks because of much more work inside there.  In about 6 weeks I'd have done a low-dose radiation schedule to catch any stragglers.

But... that didn't pan out so here are the options at the moment:

1. Surgical:  Come in from the outside, remove my voice box (total laryngectomy) and all of the cancer on my hypopharynx (above larynx).  Plus lymph removal, low-dose rad like above.  Involves some reconstruction of the hypopharynx so could compromise swallowing some. This gets all of the cancer and has a higher survival rate but, umm, note the no voice box part.  Google Val Kilmer.  However, there is some technology which seems to enable people to talk fairly normally which we need to investigate.  One example is atosmedical.us

2. Non-surgical:  high-dose radiation + chemo.  Meeting the radiation oncologist next Wed to discuss (we already discussed the low-dose).  Figure I might sport the bald look for a while from the chemo.  Longer term, radiation basically scars you so my swallowing could be compromised, anywhere from none to full (full diet to feeding tube in the stomach).  Feeding tube is unlikely, average would be small diet restrictions.  Might not work or might actually grow tumor, in which case we go to the surgical option.

Surgery has the higher survival rate, but I'm learning that is a phrase of questionable meaning.  For one, this particular cancer is fairly uncommon so they don't have much statistical data.  Much more important is that I'm youngish, healthy, fit, not doing bad habits, and not exhibiting any of the symptoms they think I should.  So my comparison survival population is not an old, fat, diabetic, hypertensive chain smoker.  So I'm inclined to go with option 2.  Seems like we can revert to surgery if needed.  But again, we are still in data collection mode.

Yesterday was a bit disappointing with the lack of surgical success, but I'm feeling a little better today about the long term prospects.  :cheers:

 

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1 hour ago, jerryskids said:

First of all, thanks to all for the continued good thoughts, and I'm happy to see some old friends from other parts of the internets dropping a note.  :cheers:

TL;dr -- Surgery got most but not all of the tumor.  Next step is either more surgery or radiation/chemo.  We'll know more in a few weeks.  We are still long-term optimistic, although there may be a "new normal."

I'm home now and typing on a keyboard so I can provide a little more detail.  Basically, the surgery wasn't really a success.  They got the main tumor/blockage out of my throat so I'm breathing much better, but it goes to places which prohibited them from getting it all with this particular surgery (laser from the inside).  Had they been able to get it all, they'd have also taken out the lymph chains on both sides, hence a much longer surgery.  I'd also have ended up with a feeding tube for a few weeks because of much more work inside there.  In about 6 weeks I'd have done a low-dose radiation schedule to catch any stragglers.

But... that didn't pan out so here are the options at the moment:

1. Surgical:  Come in from the outside, remove my voice box (total laryngectomy) and all of the cancer on my hypopharynx (above larynx).  Plus lymph removal, low-dose rad like above.  Involves some reconstruction of the hypopharynx so could compromise swallowing some. This gets all of the cancer and has a higher survival rate but, umm, note the no voice box part.  Google Val Kilmer.  However, there is some technology which seems to enable people to talk fairly normally which we need to investigate.  One example is atosmedical.us

2. Non-surgical:  high-dose radiation + chemo.  Meeting the radiation oncologist next Wed to discuss (we already discussed the low-dose).  Figure I might sport the bald look for a while from the chemo.  Longer term, radiation basically scars you so my swallowing could be compromised, anywhere from none to full (full diet to feeding tube in the stomach).  Feeding tube is unlikely, average would be small diet restrictions.  Might not work or might actually grow tumor, in which case we go to the surgical option.

Surgery has the higher survival rate, but I'm learning that is a phrase of questionable meaning.  For one, this particular cancer is fairly uncommon so they don't have much statistical data.  Much more important is that I'm youngish, healthy, fit, not doing bad habits, and not exhibiting any of the symptoms they think I should.  So my comparison survival population is not an old, fat, diabetic, hypertensive chain smoker.  So I'm inclined to go with option 2.  Seems like we can revert to surgery if needed.  But again, we are still in data collection mode.

Yesterday was a bit disappointing with the lack of surgical success, but I'm feeling a little better today about the long term prospects.  :cheers:

 

Prayers for you, Jerry.  Sounds like your mind is right and will beat this.  Also, my wife is an oncology nurse.  She regularly sees great success and recovery with chemo and radiation. Godspeed, sir.

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2 hours ago, jerryskids said:

 

Surgery has the higher survival rate, but I'm learning that is a phrase of questionable meaning.  For one, this particular cancer is fairly uncommon so they don't have much statistical data. Much more important is that I'm youngish, healthy, fit, not doing bad habits, and not exhibiting any of the symptoms they think I should.  So my comparison survival population is not an old, fat, diabetic, hypertensive chain smoker.  So I'm inclined to go with option 2.  Seems like we can revert to surgery if needed.  But again, we are still in data collection mode.

Yesterday was a bit disappointing with the lack of surgical success, but I'm feeling a little better today about the long term prospects.  :cheers:

 

I thought you mentioned you were on Team HPV16 Poosay Eatin' Cancer?  That one is (unfortunately) getting more and more common.  All the cool kids are getting it!  Did that diagnosis change after more tests/analysis?   

I'm curious what they say regarding radiation and if it differs from my treatment.

Hang in there man. 

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8 minutes ago, DonS said:

I thought you mentioned you were on Team HPV16 Poosay Eatin' Cancer?  That one is (unfortunately) getting more and more common.  All the cool kids are getting it!  Did that diagnosis change after more tests/analysis?   

I'm curious what they say regarding radiation and if it differs from my treatment.

Hang in there man. 

Sorry for the confusion.  There were some commonalities but no, that's not come up with the docs.

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Just saw this. Sorry to hear Jerry!  Ts & Ps. Best wishes to you!  

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Holy crap that’s a scary update. They can do surgery but would have to gut your entire throat, insane. Or do chemo which sucks in it’s own ways and basically poisons you but hopefully kills the cancer. This stuff really freaks me out but I like hearing about it. I’ll never forget seeing Rholio post about a routine colonoscopy then mere months later he’s dead. 

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18 hours ago, jerryskids said:

First of all, thanks to all for the continued good thoughts, and I'm happy to see some old friends from other parts of the internets dropping a note.  :cheers:

TL;dr -- Surgery got most but not all of the tumor.  Next step is either more surgery or radiation/chemo.  We'll know more in a few weeks.  We are still long-term optimistic, although there may be a "new normal."

I'm home now and typing on a keyboard so I can provide a little more detail.  Basically, the surgery wasn't really a success.  They got the main tumor/blockage out of my throat so I'm breathing much better, but it goes to places which prohibited them from getting it all with this particular surgery (laser from the inside).  Had they been able to get it all, they'd have also taken out the lymph chains on both sides, hence a much longer surgery.  I'd also have ended up with a feeding tube for a few weeks because of much more work inside there.  In about 6 weeks I'd have done a low-dose radiation schedule to catch any stragglers.

But... that didn't pan out so here are the options at the moment:

1. Surgical:  Come in from the outside, remove my voice box (total laryngectomy) and all of the cancer on my hypopharynx (above larynx).  Plus lymph removal, low-dose rad like above.  Involves some reconstruction of the hypopharynx so could compromise swallowing some. This gets all of the cancer and has a higher survival rate but, umm, note the no voice box part.  Google Val Kilmer.  However, there is some technology which seems to enable people to talk fairly normally which we need to investigate.  One example is atosmedical.us

2. Non-surgical:  high-dose radiation + chemo.  Meeting the radiation oncologist next Wed to discuss (we already discussed the low-dose).  Figure I might sport the bald look for a while from the chemo.  Longer term, radiation basically scars you so my swallowing could be compromised, anywhere from none to full (full diet to feeding tube in the stomach).  Feeding tube is unlikely, average would be small diet restrictions.  Might not work or might actually grow tumor, in which case we go to the surgical option.

Surgery has the higher survival rate, but I'm learning that is a phrase of questionable meaning.  For one, this particular cancer is fairly uncommon so they don't have much statistical data.  Much more important is that I'm youngish, healthy, fit, not doing bad habits, and not exhibiting any of the symptoms they think I should.  So my comparison survival population is not an old, fat, diabetic, hypertensive chain smoker.  So I'm inclined to go with option 2.  Seems like we can revert to surgery if needed.  But again, we are still in data collection mode.

Yesterday was a bit disappointing with the lack of surgical success, but I'm feeling a little better today about the long term prospects.  :cheers:

 

I always favor the cutting options but I won't hazard an opinion on this decision. You just have to gather all the info you can and figure out the way to go. You can learn to talk without your vocal chords. Its not going to sound great but if your survival chances are much better with the removal of the voice box.....

Hang in there Jerry. Its not BS that patients with strong loving family support  do better than those who don't. So ya got that going for ya too!   

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The brightside of going the radiation route is that you'll end up with a cool souvenir!  (assuming that your treatment is anything like mine was) 

Really isn't as bad as it looks.  It snaps into the table and ensures that your body is in the exact same position every time.  I suppose it might freak you out if you're at all claustrophobic, though.  Most uncomfortable part for me was the mouth guard that I had to use as I have a filling on one of my lower teeth.

I wanted to hang it in my office as a war trophy but my wife shot down that idea. I tried the "my body my choice" argument but she wasn't having any of it. :mad:

 

 

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3 minutes ago, MedStudent said:

I always favor the cutting options but I won't hazard an opinion on this decision. You just have to gather all the info you can and figure out the way to go. You can learn to talk without your vocal chords. Its not going to sound great but if your survival chances are much better with the removal of the voice box.....

Hang in there Jerry. Its not BS that patients with strong loving family support  do better than those who don't. So ya got that going for ya too!   

Thanks.  The decision, like the emotions, is a yo-yo.  So much to process.  They thought I had supraglottal laryngeal cancer, but it is hypopharyngeal cancer.  Which is big medical jargon for slightly higher on my throat.  Apparently this is more dangerous, it seems because it can spread easier.  But my PET scan was clear outside of the tumor and left lymph nodes, so it is not "distant" yet and doesn't seem to have spread to bone or soft tissue higher up.  There isn't a lot of data to get my arms around how much better surgery would be.  I'm slowly realizing that I can't just rule out the surgical option.

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3 minutes ago, DonS said:

The brightside of going the radiation route is that you'll end up with a cool souvenir!  (assuming that your treatment is anything like mine was) 

Really isn't as bad as it looks.  It snaps into the table and ensures that your body is in the exact same position every time.  I suppose it might freak you out if you're at all claustrophobic, though.  Most uncomfortable part for me was the mouth guard that I had to use as I have a filling on one of my lower teeth.

I wanted to hang it in my office as a war trophy but my wife shot down that idea. I tried the "my body my choice" argument but she wasn't having any of it. :mad:

 

 

I'm not claustrophobic so I'll do fine in the machine.  I do have a crap-ton of fillings though... :unsure:

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19 hours ago, jerryskids said:

First of all, thanks to all for the continued good thoughts, and I'm happy to see some old friends from other parts of the internets dropping a note.  :cheers:

TL;dr -- Surgery got most but not all of the tumor.  Next step is either more surgery or radiation/chemo.  We'll know more in a few weeks.  We are still long-term optimistic, although there may be a "new normal."

I'm home now and typing on a keyboard so I can provide a little more detail.  Basically, the surgery wasn't really a success.  They got the main tumor/blockage out of my throat so I'm breathing much better, but it goes to places which prohibited them from getting it all with this particular surgery (laser from the inside).  Had they been able to get it all, they'd have also taken out the lymph chains on both sides, hence a much longer surgery.  I'd also have ended up with a feeding tube for a few weeks because of much more work inside there.  In about 6 weeks I'd have done a low-dose radiation schedule to catch any stragglers.

But... that didn't pan out so here are the options at the moment:

1. Surgical:  Come in from the outside, remove my voice box (total laryngectomy) and all of the cancer on my hypopharynx (above larynx).  Plus lymph removal, low-dose rad like above.  Involves some reconstruction of the hypopharynx so could compromise swallowing some. This gets all of the cancer and has a higher survival rate but, umm, note the no voice box part.  Google Val Kilmer.  However, there is some technology which seems to enable people to talk fairly normally which we need to investigate.  One example is atosmedical.us

2. Non-surgical:  high-dose radiation + chemo.  Meeting the radiation oncologist next Wed to discuss (we already discussed the low-dose).  Figure I might sport the bald look for a while from the chemo.  Longer term, radiation basically scars you so my swallowing could be compromised, anywhere from none to full (full diet to feeding tube in the stomach).  Feeding tube is unlikely, average would be small diet restrictions.  Might not work or might actually grow tumor, in which case we go to the surgical option.

Surgery has the higher survival rate, but I'm learning that is a phrase of questionable meaning.  For one, this particular cancer is fairly uncommon so they don't have much statistical data.  Much more important is that I'm youngish, healthy, fit, not doing bad habits, and not exhibiting any of the symptoms they think I should.  So my comparison survival population is not an old, fat, diabetic, hypertensive chain smoker.  So I'm inclined to go with option 2.  Seems like we can revert to surgery if needed.  But again, we are still in data collection mode.

Yesterday was a bit disappointing with the lack of surgical success, but I'm feeling a little better today about the long term prospects.  :cheers:

 

That’s a lot to contemplate.  Glad you’re feeling better about the long term prospects.  Hang tough.  

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11 hours ago, tanatastic said:

Holy crap that’s a scary update. They can do surgery but would have to gut your entire throat, insane. Or do chemo which sucks in it’s own ways and basically poisons you but hopefully kills the cancer. This stuff really freaks me out but I like hearing about it. I’ll never forget seeing Rholio post about a routine colonoscopy then mere months later he’s dead. 

Jesus asshat, I’m sure that‘s very reassuring to Jerry right now. :doh:

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8 hours ago, OldMaid said:

Jesus asshat, I’m sure that‘s very reassuring to Jerry right now. :doh:

Can I fax you ? It’s been awhile. Nah you wouldn’t understand my NY accent anyway. : wave 👋 

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8 hours ago, Mike Isles said:

Can I fax you ? It’s been awhile. Nah you wouldn’t understand my NY accent anyway. : wave 👋 

:wave: :wub:

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On 9/5/2020 at 12:03 AM, OldMaid said:

Jesus asshat, I’m sure that‘s very reassuring to Jerry right now. :doh:

He should get a job at Hallmark.  

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Here's some inspiration for you, @jerryskids:

https://loudwire.com/dave-mustaine-iron-maiden-bruce-dickinson-helped-cancer-battle/

I knew all about Bruce Dickinson's battle with cancer, and his successful return after beating it.  That's the main reason I remained even keeled after receiving my diagnosis while my wife was really freaking out.  The Xmas prior I bought his autobiography "What Does This Button Do?" for my daughter and he covers his battle with throat cancer in a chapter titled "Fock Cancer".  That's what inspired me to immediately buy the shirt that I passed on to you.

Up the Irons and Fock Cancer!  :headbanger:

 

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11 hours ago, DonS said:

Here's some inspiration for you, @jerryskids:

https://loudwire.com/dave-mustaine-iron-maiden-bruce-dickinson-helped-cancer-battle/

I knew all about Bruce Dickinson's battle with cancer, and his successful return after beating it.  That's the main reason I remained even keeled after receiving my diagnosis while my wife was really freaking out.  The Xmas prior I bought his autobiography "What Does This Button Do?" for my daughter and he covers his battle with throat cancer in a chapter titled "Fock Cancer".  That's what inspired me to immediately buy the shirt that I passed on to you.

Up the Irons and Fock Cancer!  :headbanger:

 

Thanks Don; I had forgotten that Dickinson was a throat cancer survivor.  :thumbsup:

Not much update on my end; still collecting data.  I spoke to an oncologist friend tonight, and am talking tomorrow with a guy who has had a total laryngectomy.  We should get the medical recommendation by mid next week, then will finalize a course of action.

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5 minutes ago, jerryskids said:

Thanks Don; I had forgotten that Dickinson was a throat cancer survivor.  :thumbsup:

Not much update on my end; still collecting data.  I spoke to an oncologist friend tonight, and am talking tomorrow with a guy who has had a total laryngectomy.  We should get the medical recommendation by mid next week, then will finalize a course of action.

PM sent

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Here's a light hearted personal anecdote related to getting chemo...

Prior to my first infusion the chemo nurse (who was fantastic and cool, btw) went through this big folder of information regarding the treatment, expected side effects, counseling if you need it, etc, etc.  At one point she started talking about precautions related to sex.  We were a bit confused as sex was the absolute last thing on our minds at that point.  Basically she had to warn my wife that she needed to be careful not to come in contact with any of my bodily fluids for a day or so due to it essentially being posion.  I just started laughing and said "oh sh1t, now we gotta worry about toxic jizz???".  It was a funny moment that was very much needed.   Gotta find those moments whenever you can.

Hopefully all your doctors, nurses, and technicians are as great as the ones I had as they become an integral part of your life as you'll be seeing them every day for 6-7 weeks while undergoing radiation.

Stay strong.  :pointstosky:

 

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On 9/3/2020 at 6:53 PM, jerryskids said:

First of all, thanks to all for the continued good thoughts, and I'm happy to see some old friends from other parts of the internets dropping a note.  :cheers:

TL;dr -- Surgery got most but not all of the tumor.  Next step is either more surgery or radiation/chemo.  We'll know more in a few weeks.  We are still long-term optimistic, although there may be a "new normal."

I'm home now and typing on a keyboard so I can provide a little more detail.  Basically, the surgery wasn't really a success.  They got the main tumor/blockage out of my throat so I'm breathing much better, but it goes to places which prohibited them from getting it all with this particular surgery (laser from the inside).  Had they been able to get it all, they'd have also taken out the lymph chains on both sides, hence a much longer surgery.  I'd also have ended up with a feeding tube for a few weeks because of much more work inside there.  In about 6 weeks I'd have done a low-dose radiation schedule to catch any stragglers.

But... that didn't pan out so here are the options at the moment:

1. Surgical:  Come in from the outside, remove my voice box (total laryngectomy) and all of the cancer on my hypopharynx (above larynx).  Plus lymph removal, low-dose rad like above.  Involves some reconstruction of the hypopharynx so could compromise swallowing some. This gets all of the cancer and has a higher survival rate but, umm, note the no voice box part.  Google Val Kilmer.  However, there is some technology which seems to enable people to talk fairly normally which we need to investigate.  One example is atosmedical.us

2. Non-surgical:  high-dose radiation + chemo.  Meeting the radiation oncologist next Wed to discuss (we already discussed the low-dose).  Figure I might sport the bald look for a while from the chemo.  Longer term, radiation basically scars you so my swallowing could be compromised, anywhere from none to full (full diet to feeding tube in the stomach).  Feeding tube is unlikely, average would be small diet restrictions.  Might not work or might actually grow tumor, in which case we go to the surgical option.

Surgery has the higher survival rate, but I'm learning that is a phrase of questionable meaning.  For one, this particular cancer is fairly uncommon so they don't have much statistical data.  Much more important is that I'm youngish, healthy, fit, not doing bad habits, and not exhibiting any of the symptoms they think I should.  So my comparison survival population is not an old, fat, diabetic, hypertensive chain smoker.  So I'm inclined to go with option 2.  Seems like we can revert to surgery if needed.  But again, we are still in data collection mode.

Yesterday was a bit disappointing with the lack of surgical success, but I'm feeling a little better today about the long term prospects.  :cheers:

 

Go option 2 imo. Need to go for highest quality of life at this point. How are you feeling? I am hoping for a recovery with minimal to no effects

Getting my tonsils out was a shitty experience. Can't imagine this level of surgery on the throat

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When my wife was a few months pregnant with our second kid her father was diagnosed with throat cancer (we thought he would rather die then not be able to speak. Salesman/Singer)  and not expected to be able meet his newest grandson. 
Son was 12 when he passed away. Not saying quality of life was great all those years but he outlived all the doctors expectations 

You got this Skids !!!

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9 minutes ago, Mike Isles said:

When my wife was a few months pregnant with our second kid her father was diagnosed with throat cancer (we thought he would rather die then not be able to speak. Salesman/Singer)  and not expected to be able meet his newest grandson. 
Son was 12 when he passed away. Not saying quality of life was great all those years but he outlived all the doctors expectations 

You got this Skids !!!

Did he have his voice box removed, or treat it with chemo/radiation only?

Also, what wasn't great about his quality of life?

Thanks.  :cheers:

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3 hours ago, jerryskids said:

Did he have his voice box removed, or treat it with chemo/radiation only?

Also, what wasn't great about his quality of life?

Thanks.  :cheers:

Chemo/radiation but never lost his hair. Don’t want to depress (he was a lot older then you) but years into it he couldn’t swallow to the point of being emaciated. He was probably 90lbs when he passed. 
He loved food but at the end couldn’t eat.  

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1 minute ago, Mike Isles said:

Chemo/radiation but never lost his hair. Don’t want to depress (he was a lot older then you) but years into it he couldn’t swallow to the point of being emaciated. He was probably 90lbs when he passed. 
He loved food but at the end couldn’t eat.  

Part of my cancer treatment team was a speech pathologist.  Her job was to teach me swallowing exercises -- insert ghey joke here -- to ensure that I didn't lose the ability to swallow.  As you mention it can be a major issue for some folks. 

A good percentage of people end up needing a feeding tube during treatment so I tried my best to avoid it.  Older folks sometimes opt to go ahead and just get a feeding tube up front when they're relatively feeling strong.   Alas I ended up getting one put in about halfway thru treatment.  Spent a week in the hospital due to not being able to keep anything down and vomiting up blood.  Chemo for the win, baby!!! In the end it worked out for the best, though, as after that I didn't need to worry about getting my proper meds and nutrition.

I never lost my head hair during treatment.  Wouldn't have been able to really tell anyways since I shave my head. The radiation did make my beard fall out, though.   That was probably my lowest point - realizing that I had zero control over anything, not even my focking beard.  One morning in the shower and it was like petting a shedding dog with a wet hand. :cry:

Was not a fun road to travel by any stretch of the imagination, but my enormous GC c0ck and billions of dollars got me through it relatively unscathed.

You got this, Jerry. 

 

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