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PostPosted: Mon Oct 17, 2011 8:55 am 
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true rule62. There's definitely a lot going on in your life at the moment. I too would be considering putting off the taper until things level out a bit. I'm going through a full on chemo type treatment ATM and have put off my tapering plans for a few months at least. It is what it is, ya know what I mean? :)

Keep in mind there are non-narcotic painkillers around that are easily overlooked by us addict folk. Taking ibuprofen and acetaminophen (nurofen & panadol) together is a really effective combo and was more than enough for recovery from my liver biopsy.

If you take narcotic painkillers while staying on suboxone, its effect will be blunted. You still get some painkilling effect, but the Subs block the 'buzz' completely. In the end, IMO, just taking plain tylenol and advil together can give comparable results, without the addiction worries. Plus it's the kinda thing it doesn't hurt to just try, ya know.

I really wish you good luck. Waiting for important test results is a biatch! I wish you well, and keep fighting.


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PostPosted: Tue Oct 18, 2011 11:55 am 
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Hey Rule-Great job at identifying your "shit" as well as what YOU need. This is such an amazing transition-I am proud of you and hope you are feeling well. Keep us posted! I updated my thread.
:)
cheers.


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 Post subject: Need a Drink
PostPosted: Fri Oct 21, 2011 9:06 pm 
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For the first time in over 20 years I feel like getting all out drunk. Of course being an alcoholic who hasn't had a drink since '87, it's just a thought, not a reality.

Wasn't even sure I should post this but what the hell. Found out today I have a very rare form of cancer that is on the base of my tongue, neck, and some small areas around my head and neck. Going in for a full body scan on Monday to make sure it hasn't spread to the rest of my body. We knew it was cancer but not this bad. Stage 3 Salivary gland squamous cell carcinoma. (actually has a bigger name which I forget) Only a few hundred cases in the last 5 years so no information on how to treat it properly.

The tumor is a slow growing one so that is good news. Unfortunately, it is so rare that there just isn't data to show the best treatment. The doctor suggested surgery and chemo/radiation therapy. I am in for a minimum of 2 surgeries as the one on my neck may be impossible to remove, but he'll try.

So yes, it's quite the downer here today. The doctor said I am in for some of the worst treatment there is. That sure made my day.

Suboxone now is on the back burner and once again I'll need to get down to 1mg before my first surgery, which will be in less than three weeks. I have been taking more since I first got diagnosed a few days ago. Felt I deserved it. Anything to numb my feelings and rid my brain of this depression.

Not much more to ad. From here on in there is a lot of work to do. This one I'll be battling for the rest of my life.

Thanks all for your support.

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PostPosted: Fri Oct 21, 2011 9:58 pm 
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I am so so sorry! I don't even know what to say, there are no words I can offer. This will absolutely not be easy but you can fight this. I am not sure where you live but I urge you to look into The Cancer Treatment Centers of America. There are like 5 of them in the US in various states. Their is one in Phoenix and is where we took my grandma. She had stage 4 lung cancer for 5 years. They have all the newest and latest treatments. You also get a team of Drs and they also focus on your emotional health as well. I highly recommend checking them out, to me it would be worth the travel. I am not religious but I will say a prayer for you and your family.


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 Post subject: Prayers
PostPosted: Fri Oct 21, 2011 10:51 pm 
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Sorry your having to go through this. Try to stay positive, I know it is difficult I had cancer also. When I was told it was like the world stopped for awhile.
I will say there is now so much advancement in cancer treatment it is amazing. My advise is stay strong take your time and like breezy said research your options. Much prayer sent your way!!!!
Keep us posted and stay strong!!!

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PostPosted: Fri Oct 21, 2011 11:11 pm 
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Hey Rule,

Yep, that's a kick in the gut, but let me also tell you this, my father was diagnosed with cancer in 1993, he was given about a year to live......he didn't pass away until 2008. He got 15 years out of a "1 year to live" diagnosis AND they were all good years until very close to the end. He had a couple of surgeries and some radiation/chemo too, that helped him to keep on fighting the cancer through the years. Don't give up Bud.

As for wanting to get stinkin' ass drunk, I don't blame you. But you know as well as I do that getting plastered ain't gonna do a GD thing to help you. I'd much rather see you up your Suboxone dose for a few days like you did.

I'm gonna head upstairs and talk to my wife and daughter, we'll ALL be praying for you.

Keep your head up my friend.

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PostPosted: Sat Oct 22, 2011 8:28 am 
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I'm sending you a cyber hug, my friend. I'm so sorry this is happening. I can't even begin to fathom what kinds of feelings you are experiencing right now, but I'm sure they are many. Know that we're here for you when or if you decide you want to talk more about what you're going through.

Try to stay positive, I know that must feel next to impossible. But remember - You and your family can FIGHT this! I only know you through this forum but you seem strong and damn determined to me. I'll be thinking of you. ((((HUGS))))

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 Post subject: Re: Need a Drink
PostPosted: Sat Oct 22, 2011 1:30 pm 
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rule62 wrote:
For the first time in over 20 years I feel like getting all out drunk. Of course being an alcoholic who hasn't had a drink since '87, it's just a thought, not a reality.

Wasn't even sure I should post this but what the hell. Found out today I have a very rare form of cancer that is on the base of my tongue, neck, and some small areas around my head and neck. Going in for a full body scan on Monday to make sure it hasn't spread to the rest of my body. We knew it was cancer but not this bad. Stage 3 Salivary gland squamous cell carcinoma. (actually has a bigger name which I forget) Only a few hundred cases in the last 5 years so no information on how to treat it properly.

The tumor is a slow growing one so that is good news. Unfortunately, it is so rare that there just isn't data to show the best treatment. The doctor suggested surgery and chemo/radiation therapy. I am in for a minimum of 2 surgeries as the one on my neck may be impossible to remove, but he'll try.

So yes, it's quite the downer here today. The doctor said I am in for some of the worst treatment there is. That sure made my day.

Suboxone now is on the back burner and once again I'll need to get down to 1mg before my first surgery, which will be in less than three weeks. I have been taking more since I first got diagnosed a few days ago. Felt I deserved it. Anything to numb my feelings and rid my brain of this depression.

Not much more to ad. From here on in there is a lot of work to do. This one I'll be battling for the rest of my life.

Thanks all for your support.


Wow. I am sorry to hear this, and I hope you are able to have a lot of emotional support at this difficult time. I will be praying for you. I don't know what the hell I would do personally if I had that news, but I have to say you seem stronger than I would be at the moment-meaning, I dont know if I would have even gotten on this forum and just went straight down the hole again.
You are strong! Keep us posted if you feel like it.
<3


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PostPosted: Sun Oct 23, 2011 12:54 pm 
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Please know I am in no way tellin g you what to do or that you do not have a wonderful oncologist because I am definately no expert but I wanted to share with something I learned while going thru this with both my grandparents in the last few years. Oncologists are a bit like sub Dr.s in the fact that they are not all created equal. There are so many advancements in cancer treatments all the time that you their are some that are more knowledgeable in the latest science than others. My grandfather had cancer in his brain and was told by his 1st Dr that there was nothing they could do but chemo, the 2nd Dr said there was a new radiation treatment that he could benefit from but he did not have the machine to do it. So we went for try number 3 and found a Dr that could radiate the tumor in his brain and it shrunk and no chemo was ever necessary.

I am not saying this will be your experience but what can be rare and hard to treat to one Dr can be the opposite to another. I just wanted to pass on my experience because had we went with the 1st Dr my grandpa's cancer would have turned out very different. I can't imagine how scary this must be to you and your family but don't give up. You can beat this, and I have faith with the strength you are showing that you will!


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PostPosted: Sun Oct 23, 2011 2:35 pm 
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Wow, Rule. I'm fresh out of words. I'm just so damn sorry you got this pile of shitty news dropped on your doorstep. Don't take it lying down, my friend. I know it must be the biggest shock. It has to sink in. You have to get accustomed to having this battle to fight. Then, you can find out all the ways to fight it and you can fight it as hard as you can.

((HUGS)), prayers, positive thoughts.....I really wish I could give you the biggest hug.

laddertipper

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 Post subject: I'm Good
PostPosted: Sun Oct 23, 2011 9:39 pm 
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Thanks Jenzo, Breezy, and LT,

It is nice to know I have friends here. Your words mean a lot and I can use as many as possible.

Breezy, I just found out so I haven't even thought about an Oncologist. I suppose they'll suggest one after the surgeries and chemo/rad is over.

But you are correct about doctors having different opinions. My first ENT thought it was just going to be an easy fix, then she referred me to the best head and neck surgeon around so now I have two opinions. He took it much more seriously.

The problem is that this cancer is very rare. Only a few hundred cases and everyone had the tumor on a different body part so there is no info on how to be go about treatment. I asked what he would do if it was him and that is what I'm doing. We'll be as aggressive as we can. I do expect me to be back to normal within a year. Can't think of it any other way.

Just read in the paper today about using a robotic arm for surgery and how better it turns out. That is what I'm having done and he is the only doctor who is qualified to use it so I feel very blessed knowing I have the best treatment for this.

I've already gotten down to 3mgs and tomorrow will only take 2 if I can. Surgery isn't for another two weeks is my guess and I want to be at 1mg by then.

The shock has worn off and I'm back to my good ole self. You guys rock! Everyone has been so very nice and supportive and it's appreciated to the max. I will try not to post such disturbing topics for awhile and get back to talking about recovery.

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 Post subject: Re: I'm Good
PostPosted: Mon Oct 24, 2011 6:27 am 
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rule62 wrote:
I will try not to post such disturbing topics for awhile and get back to talking about recovery.


BULLSHIT! Talk about whatever you need to discuss! Nothing, least of all something as important as this, is off limits! If YOU don't want to talk about it, just let us know. We love you!

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PostPosted: Mon Oct 24, 2011 10:16 am 
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I absolutely 2nd Hatmaker on this one Rule62!! Talk that shit out if it helps.

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PostPosted: Mon Oct 24, 2011 11:50 am 
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Romeo wrote:
I absolutely 2nd Hatmaker on this one Rule62!! Talk that shit out if it helps.


I third that! We share lots of personal stuff on here. This is a huge thing that you are going through and I look forward to hearing that you are beating it. :D

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PostPosted: Tue Oct 25, 2011 8:49 am 
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Hey, Rule, I can't begin to tell you how truly sorry I am that your biopsy turned out the way it did. I was so hoping it was going to be a false alarm. Just know that we are here for you, we care, and you can talk, complain, bitch, cry or whatever you want about it and we will listen and support you. You can fight this thing. I personally know 2 people (in their forties) who just beat cancer in to submission. I agree with breezy, see an oncologist BEFORE you have the surgery. What your doc may consider rare my be something an oncologist has dealt with many times. You beat alcohol and now you are beating opiates. That's some serious battle experience my friend.


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 Post subject: Thanks
PostPosted: Tue Oct 25, 2011 1:51 pm 
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My wife did some research from the Cancer Institute and it said that this kind of cancer is easily treated by surgery and a little chemo and radiation, so I don't think I'm in for a bunch of terrible treatments. We have full confidence that I'll be completely recovered in less than a year.

I am lucky enough to have a specialist who will use a robotic arm for my surgery. That robot has a 70% better chance of getting it all than the human hand. It should also have minimal damage done so I feel blessed.

Breezy, what exactly does an Oncologist do? I know they specialize in cancer, but what do they do except prescribe meds?

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PostPosted: Tue Oct 25, 2011 3:29 pm 
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I guess on so many words they are just drs that specialize in cancer. The thing is there are so many treatments and advancements that they are the ones who are up to speed. Also over the course of treatment you may have surgeons or other specialists but your oncologyst would be in contact with all to keep your treatment straight. There are also things that can be done before surgery, for example my grandmother's oncologist wanted her to have radiation prior to her surgery to shrink the tumor first. He said this would give her a better chance of getting it all.

Also alot of the time your oncologist would be present during the surgery to assist if the tumors turn out different than previously thought. They do of course administer radiation and chemo too. After both my grandparents were diagnosed they were 1st sent to an oncologist and from there to a surgeon. Besides just treating your cancer your oncologist would also treat any symptoms that may arise.

To be honest I am a bit surprised they haven't referred you to one yet. If it were me I would definately make an appointment with one, they have the best understanding of how cancer works and like I said treatments advance everyday.


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 Post subject: Re: Thanks
PostPosted: Tue Oct 25, 2011 4:30 pm 
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rule62 wrote:
My wife did some research from the Cancer Institute and it said that this kind of cancer is easily treated by surgery and a little chemo and radiation, so I don't think I'm in for a bunch of terrible treatments. We have full confidence that I'll be completely recovered in less than a year.

I am lucky enough to have a specialist who will use a robotic arm for my surgery. That robot has a 70% better chance of getting it all than the human hand. It should also have minimal damage done so I feel blessed.

Breezy, what exactly does an Oncologist do? I know they specialize in cancer, but what do they do except prescribe meds?


I am so happy to hear that!

My grandmother died of pancreatic cancer when I was a kid. Of course, that's a very difficult cancer to treat, but she did not investigate her options. This was incredibly tough for my mom to deal with. There actually were many options, including some promising ones, but she refused to advocate for herself or let us advocate for her. She took the first doctor's hopeless prognosis to the bank. Who knows what she may have missed out on and what we missed out on because of this? If you advocate and investigate and are open to alternative treatments than the one you are initially offered, you are giving yourself a great chance to beat this. I recently had a friend with 'incurable' breast cancer beat the tar out of it, because she fought hard and she did her homework. She is in remission. I love your outlook, Rule, and I believe you will win, because you are already announcing that you will win.

laddertipper

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 Post subject: Update
PostPosted: Sat Nov 12, 2011 5:05 pm 
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Hey All,

Today I am into day 4 since my surgery. The doctor was able to get all the tumor so in about three weeks I'll return for another surgery to remove a lymph node right on the side of me neck.

So it was very good news that considering he got all the tumor, I'll only need minimal doses of radiation.

The mistake they made was not inserting a feeding tube while I was under. To just sip down an Ensure, it takes me 15 agonizing minutes and an hour or more for the pain to let up. He took a good bite of my tongue right where you swallow so it really hurts. They offered the tube yesterday but I don't want them to put it in while I'm awake.

This is a great weight loss program though. The only semi solid food I've had was two soft boiled eggs this morning and boy did I pay for it later. They want me to drink 6 of those Ensures....Yuck! Lucky enough to get two down. But hey, I can afford a week of low calories as long as it feels better by mid next week.

So now for the pain management. Stopped the 1mg of Sub the day before the surgery per my PCP doctors advice and went onto 10/500 Lortabs. I'm not really abusing those because I have to walk through hell just to swallow them. My thought on this was to only use those for one or two days then go back onto the Sub. My biggest fear is that Sub won't give me sufficient pain relief and once you're back on it there's no going back. Yes, the pain is that bad. Constant irritation of the surgical site just by swallowing.

That's the 411 on how it went. I do look forward to getting off the pain meds and back onto Sub.

Thanks for letting me complain a bit.

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PostPosted: Sun Nov 13, 2011 12:43 am 
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Ensure?? I didn't realize you were 87 years old?? LOL!!

I understand your need to take pain meds for the time being and I'm not gonna bust your butt.....yet!! I hope you continue being honest with us and use us as a sounding board as far as your pain killer use goes.

I'm glad the surgery went so well and that your future dose of radiation will be minimal, that's spectacular news Bud!!

Keep up the good fight Rule.

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