Introduction
I didn't do to bad through treatments, when my weight dropped below 150, I was a 220 lb man in December, they talked me into a PEG tube late Jan. During treatments I was pretty much a couch tater. May 1st of this year I decided time to get on with my life so I went back to work full time. Was on FMLA during the whole ordeal. Starting to eat via my throat about April. Fast forward to July now and my PET scan, first one, came back clean. So I am a cancer survivor at this point.
I'm eating more and more via throat. I'm back to drinking my favorite beverage, coffee. BIG coffee drinker all my life. I kept my hair, kept my teeth, never had any mouth sores or tongue sores. I attribute that to Biotene. Still having problems with saliva. They are damaged for sure. I'm on Salagen for that, and I'm not sure if it's working or my body is just repairing itself. It's amazing the abuse the human body can take and come right back to repair itself.
But with Biotene mouth spray I cope until my body can repair itself and I hope one day to grab me a big ole Ribeye from Texas Roadhouse.
My neck on the right is still numb from my jaw line to top of shoulder due to surgery, but in some places I am getting feeling back so I know my body is trying to repair the nerves.
Doc said it could happen that in a year or two I might get most of my feeling back, couldn't say for sure.
Still have my PEG tube in me. I'm shooting to have that removed in August. Doc wants me to gain a little more weight first. I'm at 150 now. But as far as I'm concerned it's my call, not his. I drink a lot of Ensure or Boost. Mostly to get some weight back.
My chemo doctor thinks I'm doing prety good for not being that far out of treatment. I'm just glad I suffered very little side effects and I attribute that to God willing to walk with me on this journey, to make sure I'd be ok. One night he even sent me an Angel to instill peace in my troubled heart knowing I had cancer. I was wide awake when I saw her, REALLY, he really did. It was then I knew I wasn't alone, that he had heard. For I felt a peace in my heart that I have never felt before.
Well, I guess I've gone on long enough, if you have any questions, ask me, I like to help people. I've been there, like you have, and learned many things in the process. More than happy to share with you. And for those that are having a difficult time, remember this:
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
Isaiah 41:10
Comments
-
welcome
Welcome Chris! I see a juicy ribeye in your future for sure. Jealous that you kept your hair! My angels have so far come in earthly form but I credit them for saving my life and answering my prayers. The neck/nerve business has been slow but steady for me. At 20 m9nths out from last treatment, I'm prepared to have some on-going lack of sensation if necessary. Given what I've been through, I can definitely live with that! Will let others weigh in about weight. I haven't had much success in that department post-PEG (maintaining but not gaining). Eager to hear other's experience. Keep on with the "getting on" with life!
Vince0 -
STARTING THE JOURNEY TODAY
Your post is REAL encouraging to read. I go see my ENT Ocologist for the first visit today. So far I know I have a 1.8 CM at the BOT and a 9CM and several smaller tumors on the right side of my neck. The 9CM is pushing against my Internal Jugular.
My biggest fear is they will find more cancer when they do a PET scan. I have no symptoms at all. I discovered all of this 3 weeks ago last Saturday when I was brushing my teeth and noticed the very visible lump on the Right side of my neck. This thing literally popped up overnight. Saw the doc on Monday, was given 10 days of Antibiotics. My symptoms then were like MONO. Very tired and my joints ached. next step was an US of the lump and then a FNA which indicated Sqaumous Cell C. I then had a Neck CT which showed the BOT mass and the rest. I have no idea how long this has been developing. I have heard this type of C hits smokers, chewers and drinkers later in life. I am only 46 and never smoked or chewed but did drink pretty regularly.
I cannot wait to log onto this site now as I see so many "real people" doing pretty good, and willing to talk about it. Right now I have my standards probably set too high. I feel great, I am a Power Lifeter and in good shape with plenty of good LBS to be able to lose if I get real sick. I envison myself going back to the gym several months out of treatment, but that probably will not happen. I am afraid I am setting my self up for a huge dissapointment when the "real world" hits and I am laid up for a long long time.
Best of luck to you going forward.
Mike0 -
Thanks Vince, my weightfriend of Bill said:welcome
Welcome Chris! I see a juicy ribeye in your future for sure. Jealous that you kept your hair! My angels have so far come in earthly form but I credit them for saving my life and answering my prayers. The neck/nerve business has been slow but steady for me. At 20 m9nths out from last treatment, I'm prepared to have some on-going lack of sensation if necessary. Given what I've been through, I can definitely live with that! Will let others weigh in about weight. I haven't had much success in that department post-PEG (maintaining but not gaining). Eager to hear other's experience. Keep on with the "getting on" with life!
Vince
Thanks Vince, my weight isn't a success story either, I seem to be stuck at 150. I might start drinking some Carnation VHC, at 560 calories a can, it might put some meat on me and make my doc a happy camper. The neck/nerve thing bothers me, but I cope with it. I'm hoping in a couple years it straightens itself out.0 -
Your story sounds like mineluv4lacrosse said:STARTING THE JOURNEY TODAY
Your post is REAL encouraging to read. I go see my ENT Ocologist for the first visit today. So far I know I have a 1.8 CM at the BOT and a 9CM and several smaller tumors on the right side of my neck. The 9CM is pushing against my Internal Jugular.
My biggest fear is they will find more cancer when they do a PET scan. I have no symptoms at all. I discovered all of this 3 weeks ago last Saturday when I was brushing my teeth and noticed the very visible lump on the Right side of my neck. This thing literally popped up overnight. Saw the doc on Monday, was given 10 days of Antibiotics. My symptoms then were like MONO. Very tired and my joints ached. next step was an US of the lump and then a FNA which indicated Sqaumous Cell C. I then had a Neck CT which showed the BOT mass and the rest. I have no idea how long this has been developing. I have heard this type of C hits smokers, chewers and drinkers later in life. I am only 46 and never smoked or chewed but did drink pretty regularly.
I cannot wait to log onto this site now as I see so many "real people" doing pretty good, and willing to talk about it. Right now I have my standards probably set too high. I feel great, I am a Power Lifeter and in good shape with plenty of good LBS to be able to lose if I get real sick. I envison myself going back to the gym several months out of treatment, but that probably will not happen. I am afraid I am setting my self up for a huge dissapointment when the "real world" hits and I am laid up for a long long time.
Best of luck to you going forward.
Mike
Mike, your story sounds just like mine. No symptoms, it just popped out on the right side of my neck one day. Like you, the family doctor thought it might be infection, put me on anti-biotics because I did have a bad head cold, and said if it didn't go away in 2-3 months come back and I'll send you to a ENT.
3 months later it was still there, he sent me to an ENT for a biopsy, he scoped my throat and said I see a spot on the base of your tongue, he did a biopsy on that. It all came back as Sqaumous Cell. I was never a drinker, never chewed, did smoke in high school, I'm 51 years old. Cancer does run on my moms side of the family.
Being a Power Lifter, you have willpower, and you're going to need it. No sugar coating with me. You take that same can do attitude you have in power lifting and apply it to kicking C's butt. If you believe in religion, talk to the man upstairs, he is listening on the days that are rough for you. You will have rough days. But they have many types of meds to make it easier on you.
I had Zofran the whole time I was going through treatments. Wonderful stuff, it'll knock the nausea right out of you. Phenergan is also good, but it can make you sleepy. Ativan is also good stuff for it will settle your stomach and relax you. It'll even help you sleep better.
Before you start treatments, get your teeth cleaned at the dentist. Get yourself some Biotene mouthwash and spray. You can find it at Wallgreens, CVS, Walmart. Rinse out 5-6 times a day with it. It'll protect you teeth and gums and prevent sores. You can also use baking soda & salt in water. I went the Biotene route, tastes better.
Drink tons of water to keep hydrated, being a lifter you know all about hydration. If you get Thrush of the mouth, don't worry, they have plenty of meds to knock it out of you. But by rinsing with Biotene often you'll lessen the chance of getting it. I only got it twice through my ordeal.
Don't count out going back to Power Lifting. Back in April I was out there putting plugs, wires, coil, cap and rotor on my Chevy pickup tuning it up for spring. I even dug out the lawn mower and cut my grass. When I told the doctor he couldn't believe it.
Yeah it kicked my butt, doing all that. But like the doctor said, the only way to get your strength and stamina back is to push yourself a little every day, more on days you don't want to. It comes back. I see a difference in my strength and stamina compared to what it was in April.
Keep in touch Mike, I'm here and I'm sure others are, if you need some support.
Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you."
Deuteronomy 31:60 -
BODY PREPARATIONchris731 said:Your story sounds like mine
Mike, your story sounds just like mine. No symptoms, it just popped out on the right side of my neck one day. Like you, the family doctor thought it might be infection, put me on anti-biotics because I did have a bad head cold, and said if it didn't go away in 2-3 months come back and I'll send you to a ENT.
3 months later it was still there, he sent me to an ENT for a biopsy, he scoped my throat and said I see a spot on the base of your tongue, he did a biopsy on that. It all came back as Sqaumous Cell. I was never a drinker, never chewed, did smoke in high school, I'm 51 years old. Cancer does run on my moms side of the family.
Being a Power Lifter, you have willpower, and you're going to need it. No sugar coating with me. You take that same can do attitude you have in power lifting and apply it to kicking C's butt. If you believe in religion, talk to the man upstairs, he is listening on the days that are rough for you. You will have rough days. But they have many types of meds to make it easier on you.
I had Zofran the whole time I was going through treatments. Wonderful stuff, it'll knock the nausea right out of you. Phenergan is also good, but it can make you sleepy. Ativan is also good stuff for it will settle your stomach and relax you. It'll even help you sleep better.
Before you start treatments, get your teeth cleaned at the dentist. Get yourself some Biotene mouthwash and spray. You can find it at Wallgreens, CVS, Walmart. Rinse out 5-6 times a day with it. It'll protect you teeth and gums and prevent sores. You can also use baking soda & salt in water. I went the Biotene route, tastes better.
Drink tons of water to keep hydrated, being a lifter you know all about hydration. If you get Thrush of the mouth, don't worry, they have plenty of meds to knock it out of you. But by rinsing with Biotene often you'll lessen the chance of getting it. I only got it twice through my ordeal.
Don't count out going back to Power Lifting. Back in April I was out there putting plugs, wires, coil, cap and rotor on my Chevy pickup tuning it up for spring. I even dug out the lawn mower and cut my grass. When I told the doctor he couldn't believe it.
Yeah it kicked my butt, doing all that. But like the doctor said, the only way to get your strength and stamina back is to push yourself a little every day, more on days you don't want to. It comes back. I see a difference in my strength and stamina compared to what it was in April.
Keep in touch Mike, I'm here and I'm sure others are, if you need some support.
Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you."
Deuteronomy 31:6
Thanks for all of the good advice. I have the hydration and a good nutrition plan already established. I will be on the lookout for the mouth products you refered to.
I have my PET Scan today, I will post my current situation.
Best!!
Mike0 -
Good Luck!luv4lacrosse said:BODY PREPARATION
Thanks for all of the good advice. I have the hydration and a good nutrition plan already established. I will be on the lookout for the mouth products you refered to.
I have my PET Scan today, I will post my current situation.
Best!!
Mike
Hey, Just wanted to wish you luck from your PET scan! There is a light at the end of the tunnel. We will get through this!
Charles0 -
Hydration & Nutrition
For you and other reading this... EAT, DRINK (and be merry if you can). But Eat and Drink for sure.
My wife has been undergoing treatment for NPC since late March. Initially 2 2-week sessions of Cisplatin + 5FU, with a week break. Then IMRT 33 daily fractions of 2.1 Gy, plus weekly Cisplatin. The week break turned into 3 because of low neutrophils. She started having difficulty swallowing about the 2nd week of RT, and by the 4th week was just sipping water and taking maybe 800 calories/day.
When she went in for her 4th week concurrent chemo, they couldn't find a vein (after 2 hours and multiple false jabs - ouch) Why? Because she was dehydrated and her veins "collapsed". They did manage 1L saline, but no chemo. That was Fri. They sched her for Monday drip hydration, but at that time discovered she had neutropenic fever & electrolytes badly out of whack. She was admitted for 8 days of drip saline & antibiotics & electrolytes. No RT / chemo for the whole week. On the 3rd day they finally put in an NG tube and started Ensure. She "got out" this week, and is home and "eating" well with the NG tube.
Enough history -- here's the moral. That was the most difficult time, but it probably didn't have to work out that way. She had been given morphine for throat pain - 5mg 6x daily - but didn't want to take it. Because of that the pain kept her from eating / drinking, and because of that all else went downhill.
You HAVE TO keep your nutrition & hydration up. Both for the reasons above, and because if you lose too much weight they'll have to re-form your shell and re-program the RT beams (another few $100). As well, mucositis, mouth ulcers, thrush, and dental problems all become worse.
She'll have the last 3 RT fractions next week, and they've canceled the remaining chemos. Yea! Dr's review meeting this AM was very positive, and we're fully confident of complete remission, and good recovery from side effects.0 -
Chris!!, that is MARVELOUS,
Chris!!, that is MARVELOUS, OUTSTANDING, FANTASTIC, and all other good words!!!!!! I"m glad you have come thru the trmnts with little or no bad experiences. I pray God will contintue to get you thru and keep you cancer free.
God bless you,
debbie0 -
Thanks!debbiejeanne said:Chris!!, that is MARVELOUS,
Chris!!, that is MARVELOUS, OUTSTANDING, FANTASTIC, and all other good words!!!!!! I"m glad you have come thru the trmnts with little or no bad experiences. I pray God will contintue to get you thru and keep you cancer free.
God bless you,
debbie
Thank you Debbie, I'll take prayers any day for I know they are heard and work. You have a blessed day.0 -
Mike, Welcome. It is sadluv4lacrosse said:STARTING THE JOURNEY TODAY
Your post is REAL encouraging to read. I go see my ENT Ocologist for the first visit today. So far I know I have a 1.8 CM at the BOT and a 9CM and several smaller tumors on the right side of my neck. The 9CM is pushing against my Internal Jugular.
My biggest fear is they will find more cancer when they do a PET scan. I have no symptoms at all. I discovered all of this 3 weeks ago last Saturday when I was brushing my teeth and noticed the very visible lump on the Right side of my neck. This thing literally popped up overnight. Saw the doc on Monday, was given 10 days of Antibiotics. My symptoms then were like MONO. Very tired and my joints ached. next step was an US of the lump and then a FNA which indicated Sqaumous Cell C. I then had a Neck CT which showed the BOT mass and the rest. I have no idea how long this has been developing. I have heard this type of C hits smokers, chewers and drinkers later in life. I am only 46 and never smoked or chewed but did drink pretty regularly.
I cannot wait to log onto this site now as I see so many "real people" doing pretty good, and willing to talk about it. Right now I have my standards probably set too high. I feel great, I am a Power Lifeter and in good shape with plenty of good LBS to be able to lose if I get real sick. I envison myself going back to the gym several months out of treatment, but that probably will not happen. I am afraid I am setting my self up for a huge dissapointment when the "real world" hits and I am laid up for a long long time.
Best of luck to you going forward.
Mike
Mike, Welcome. It is sad that you need to be here but I'm glad you found the site. People here are very willing to help and answer any questions you may have. I would start by asking the room what questions you will need to ask your doc if you aren't sure. I had no idea what to ask and I didn't find this site until I was completely done with trmnt. I still come here almost everyday just to welcome others and gain information.
I wish you the very best as you start your journey. I recommend you come here often as you will find that we really understand what you're feeling and what you're going thru b/c we've been there. You will definitely be in my prayers. I hope to see many post from you.
Chris and others who are new, the above goes for you as well.
God Bless you allm
debbie0
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