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squiggyrn
Posts: 4
Joined: Mar 2013

My name is mike I was diagnous with tounge cancer 5-16-12 , this last year has been just unbeleivible I went from being 216# able to lift weights to 159# . I have lost about 60% of my strenght. I used to live to eat now food is just something that is required to stay alive. I have been in remission for about 3 months and everday is a trial. Recently I had to change jobs cause I could not due my old job but requires me to finish my bsn. This hole process scares the **** out of me. I try to remember I need to be greatfull for everthing I have, but some times I find it hard and almost in tears. My llife has been changed and I don't like it. I wish that my taste buds would come back and that I could get ride of the thrush for more than a week. I know that I am wining but to me it is unloading. I have 21 years in AA and that was an easy recovery compaired to this at times. Thank YOu for listening.

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Welcome dude...., no whining, you're just blowing off some long over due steam..., and to people that might be the only ones that totally get it, and you.

This is an awesome site and great people...

As for your current situation, more than likely you're going to be back on your game in the future. Just the recovery time can be a little brutal at imes...very slow...measured in months and even years for a few things.

I was STGIII SCC Tonsils HPV+, back in January 2009... It took nearly two years to completely get the taste back, but both taste and saliva were back enough in six months or so to survive...

Just hang in there, stay positive, and keep a sense of humor... Sometimes all you can do is just laugh...

Best,

John

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Welcome to our family, sorry you have the need to be here.
All of what you said is sadly very common to most of our members. I can tell you that it WILL get better! 3 months out is still the infant stages of healing.
It was at about 4 1/2 months that I started getting my taste back. Now at 9 months it's about 95% back. As for the thrush, are you finishing all of your RX each time you take it? It's important to do that. I know some people take "most of it" or stop when they start feeling better. That being said, I got thrush a few times too! It's no fun but it too will pass.
The weight will take time, radiation is still cooking you and while that is going on tons of calories are being used up. I didn't gain anything back until about 6 months out and still I haven't gained all of it, not even close.

As for energy, it certainly a common side effect of treatment however, it could be a combination of things so it would be wise to have your primary dr run a blood panel. We Head and Neck patients are subject to thyroid issues which greatly affect our energy levels. It's no big deal and one little daily pill will help. There is also a chance of a little depression that my dr actually blames on PTSD. I am lucky enough to have both the thyroid and depression issues. Again a pill for both and I feel much better. These are both very common issues which many members on here have. You'll be hearing from many more of us. Please chime in with their responses and know that you can ask us anything! No question is off limits.

Oh and by the way, congrats on your sobriety! 21 years is amazing!!!

Take good care,
Billie

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Welcome to our family, sorry you have the need to be here.
All of what you said is sadly very common to most of our members. I can tell you that it WILL get better! 3 months out is still the infant stages of healing.
It was at about 4 1/2 months that I started getting my taste back. Now at 9 months it's about 95% back. As for the thrush, are you finishing all of your RX each time you take it? It's important to do that. I know some people take "most of it" or stop when they start feeling better. That being said, I got thrush a few times too! It's no fun but it too will pass.
The weight will take time, radiation is still cooking you and while that is going on tons of calories are being used up. I didn't gain anything back until about 6 months out and still I haven't gained all of it, not even close.

As for energy, it certainly a common side effect of treatment however, it could be a combination of things so it would be wise to have your primary dr run a blood panel. We Head and Neck patients are subject to thyroid issues which greatly affect our energy levels. It's no big deal and one little daily pill will help. There is also a chance of a little depression that my dr actually blames on PTSD. I am lucky enough to have both the thyroid and depression issues. Again a pill for both and I feel much better. These are both very common issues which many members on here have. You'll be hearing from many more of us. Please chime in with their responses and know that you can ask us anything! No question is off limits.

Oh and by the way, congrats on your sobriety! 21 years is amazing!!!

Take good care,
Billie

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Welcome to our family, sorry you have the need to be here.
All of what you said is sadly very common to most of our members. I can tell you that it WILL get better! 3 months out is still the infant stages of healing.
It was at about 4 1/2 months that I started getting my taste back. Now at 9 months it's about 95% back. As for the thrush, are you finishing all of your RX each time you take it? It's important to do that. I know some people take "most of it" or stop when they start feeling better. That being said, I got thrush a few times too! It's no fun but it too will pass.
The weight will take time, radiation is still cooking you and while that is going on tons of calories are being used up. I didn't gain anything back until about 6 months out and still I haven't gained all of it, not even close.

As for energy, it certainly a common side effect of treatment however, it could be a combination of things so it would be wise to have your primary dr run a blood panel. We Head and Neck patients are subject to thyroid issues which greatly affect our energy levels. It's no big deal and one little daily pill will help. There is also a chance of a little depression that my dr actually blames on PTSD. I am lucky enough to have both the thyroid and depression issues. Again a pill for both and I feel much better. These are both very common issues which many members on here have. You'll be hearing from many more of us. Please chime in with their responses and know that you can ask us anything! No question is off limits.

Oh and by the way, congrats on your sobriety! 21 years is amazing!!!

Take good care,
Billie

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Welcome to our family, sorry you have the need to be here.
All of what you said is sadly very common to most of our members. I can tell you that it WILL get better! 3 months out is still the infant stages of healing.
It was at about 4 1/2 months that I started getting my taste back. Now at 9 months it's about 95% back. As for the thrush, are you finishing all of your RX each time you take it? It's important to do that. I know some people take "most of it" or stop when they start feeling better. That being said, I got thrush a few times too! It's no fun but it too will pass.
The weight will take time, radiation is still cooking you and while that is going on tons of calories are being used up. I didn't gain anything back until about 6 months out and still I haven't gained all of it, not even close.

As for energy, it certainly a common side effect of treatment however, it could be a combination of things so it would be wise to have your primary dr run a blood panel. We Head and Neck patients are subject to thyroid issues which greatly affect our energy levels. It's no big deal and one little daily pill will help. There is also a chance of a little depression that my dr actually blames on PTSD. I am lucky enough to have both the thyroid and depression issues. Again a pill for both and I feel much better. These are both very common issues which many members on here have. You'll be hearing from many more of us. Please chime in with their responses and know that you can ask us anything! No question is off limits.

Oh and by the way, congrats on your sobriety! 21 years is amazing!!!

Take good care,
Billie

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Welcome to our family, sorry you have the need to be here.
All of what you said is sadly very common to most of our members. I can tell you that it WILL get better! 3 months out is still the infant stages of healing.
It was at about 4 1/2 months that I started getting my taste back. Now at 9 months it's about 95% back. As for the thrush, are you finishing all of your RX each time you take it? It's important to do that. I know some people take "most of it" or stop when they start feeling better. That being said, I got thrush a few times too! It's no fun but it too will pass.
The weight will take time, radiation is still cooking you and while that is going on tons of calories are being used up. I didn't gain anything back until about 6 months out and still I haven't gained all of it, not even close.

As for energy, it certainly a common side effect of treatment however, it could be a combination of things so it would be wise to have your primary dr run a blood panel. We Head and Neck patients are subject to thyroid issues which greatly affect our energy levels. It's no big deal and one little daily pill will help. There is also a chance of a little depression that my dr actually blames on PTSD. I am lucky enough to have both the thyroid and depression issues. Again a pill for both and I feel much better. These are both very common issues which many members on here have. You'll be hearing from many more of us. Please chime in with their responses and know that you can ask us anything! No question is off limits.

Oh and by the way, congrats on your sobriety! 21 years is amazing!!!

Take good care,
Billie

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Why the heck did it post so many times? I swear I only sent it once! Now I can't delete the extras, anyone who can delete the "extras" please feel free to do it!
Wow this is strange! Frustrating but strange
Billie

longtermsurvivor's picture
longtermsurvivor
Posts: 1831
Joined: Mar 2010

either that or you have echolalia.Laughing

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Now I'm scared to post anything else!
Billie

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

You just have to go back an edit each of those so that you talk about something different each post..., LOL. That way it looks like you planned to have five posts....

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

MIke, i understand what you mean about eating.  i too, eat to stay alive not because i enjoy it.  that will come back  tho.  mine came back from my rad trmnts but since then i've had surgery and it hasn't come back and it has been 13  months.  the recovery road is rough but you will get thru it. just hang in there.

God bless.

deb

phrannie51's picture
phrannie51
Posts: 3822
Joined: Mar 2012

....for sure this recovery is a tad bit harder than alcohol/drug recovery....at least physically (I'm 26 years clean and sober)....but you WILL get better.  I'm going on 8 months out of radiation, and 6 months out of chemo....and it's still getting better.....it's just such a slow process.  Taste went from nothing having any taste, to 3 bites having taste.....now it's up to 5 or 6 bites.....went from no saliva to being able to lick my lips even without a water jug by my side.  Haven't gained much weight back, but know that will be coming, also.

Thrush is hell....I got it every other week until probably December....I couldn't understand why, either.....I mean I was out of treatment....but then suddenly it quit coming back. 

Just saying hang in there.....things are going to get better.

p

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Squig, please forgive Billie, she has had this bad stuttering problem every since she gave up her Ensure..., LOL

Actually I know that today's connection is a little squirrely...

JG

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Very funny John, I will try to get my ssssssttttutttering problem under control :-)
Maybe I should mention this to my speech therapist?

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

Mike , if it helps at all I know exactly how you feel ! I don't have any hobbies so eating was my life . I love the taste of food mostly sweets and meats and now I can't eat either one . I have been out of Rads now for 5 months and have a dry mouth and I am just starting to get a little taste back. I needed to lose weight for years but not this way. I was 244 and now I weigh 176. My primary care Doctor doesn't want me to keep losing but I can't seem to eat enough to stop. I'm just hoping my taste comes back soon and everyone on here says it will ! Being in remission is a good thing . Best of luck to you for staying that way.

Peggy

cureitall66's picture
cureitall66
Posts: 874
Joined: Aug 2012

Squiggy...Welcome the forum. Today was your lucky day! You found a forum that is full of very helpful, and encouraging folks. You will find long time survivors to more recent survivors.

I'm a caregiver to a loved one (Male age 51) that was dx in Aug 2012 with SCC of BOT (Base of Tongue), HPV+16, 2 lymph nodes invoved, Stage IV. He finished his tx (7 wks chemo & rads) in early December and recently had an NED scan. Like you, we've had our share of ups and downs from the moment we were dx and still do. I believe that everyone is different with their recovery because not everyone's tx is the same and our bodies all heal at different rates....but, we must be sure to get the proper nutrition, exercise, and encouragement as we can.

I guarantee you will get encouragement and great advice here! I think the issues you speak of are very common for the time period you're at....as I'm seeing some of the same issues with my loved one.  If you can find a person in your life that you feel understands you the most, I would confide in them with your fears...and you have all of us here. I'm told by some long time survivors that as time goes on it gets better. You will never forget this process that you've been through, but it will ease up. You will think of "c" less as years go by.....and you reach the "Abi-normal" that so many here talk about. Maybe Skiffin will chime in and tell you about the "Abi-Normal" process...he uses it often in his posts...LOL.

I hope you stick around here. Maybe you will find this a nice place to come and release or find someone who is dealing with the same issue(s) you are having or have had. You may even find you can offer a piece of advice to someone that may also make you feel better. Please stick around...you won't feel so alone if you do.

God Bless,

~C 

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Throwing out all of that cancer terminlogy, I think you might have just become cancer edumacated while on your journey here...

LOL, seems that somewhere I might have mentioned, you'll learn more about H&N Cancer and Treatment than you would have ever realized...

Best to you and the man...

~JG

cureitall66's picture
cureitall66
Posts: 874
Joined: Aug 2012

I learned from the BEST....includes you Skiffin...lol. Laughing

CivilMatt's picture
CivilMatt
Posts: 3069
Joined: May 2012

Hey Mike,

 

If I could quit laughing at Billie I would tell you “all sounds normal”.  These thing are not fun, but they sure beat having cancer (that sh_t will kill you).  If you can find Billie’s post she makes some good points.

 

Hang in there buddy, you might have to work at it , but things will get better and blown off steam is very normal.

 

Matt

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I am SO never going to live this one down. And to think....some of my blond is actually paid for!
I'm still trying to figure out how it happened so I never do it again haha
Billie

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Billie, in your defense....

The site was a little crazy yeasterda, it timed out on me a few times, and it also refused the connection a few times.

If you hit the repy button to post more than once, it'll stick a reply in eac time you hit it...

If you time out and refresh, it'll repost it each time...

I've learned that most of the time when it times out. It actually did take the post first..., but that's not 100% either.

JG

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Squiggy:

Welcome to our little piece of the internet.

I am a 2 year tongue cancer survivor and am doing very well.  You didn't mention if you had surgery, radiation and/or chemo, but it sounds like you are on the other side of the treament so good for you on that. 

I had 75% of my tongue removed and replaced with tissue, muscle, artery from my left forearm, plus the removal of 40 lymph nodes in my neck.  The taste buds will take a while to come back...mine took almost all of 2 years.  The tongue contains a LOT of taste buds, so some of mine are gone forever.  As others have said, things get better but it takes time...lots of time in most cases.

I won't lie to you....things will be different.  Cancer has changed my life.  Things are different now. But I would do it all again in a heartbeat.  The surgery and treatment gave me a second chance and I don't plan to waste it. 

Feel free to vent here any time...we all understand.  And also ask whatever questions you may have.

Some day you will also be a 21-year cancer survivor !

 

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