Noob with floor of mouth cancer

ozymandible

Remington25 said:

Exercise?

My docs really stressed that I keep moving as much as possible to keep my lymphatic system flowing.  I believe this has helped me as my lymphadema is very minor.  I walk at least 10,000 steps per day and try to do other things as well a little bit.  My docs think that has really helped me avoid lymphadema and kept my neck from getting overly stiff.  Just my $.02

Thank you. I do feel better

Thank you. I do feel better when I get up and move around but there have been many days that the pain was so bad I didn't want to do anything!  The pressure of just my eyeglasses sitting on my head was horrible!  

Maybe I'm fixing to turn the corner now though.  I started doing the jaw and neck exercises that fishmanpa posted https://csn.cancer.org/node/261441 and doing the lymphatic massage that Russ posted earlier and massaging my neck and shoulders anywhere it feels tight.  Not hitting the pain pills so hard today.  Exercises didn't hurt bad enough to medicate-what pain I had went away shortly.

The swelling on my neck has gone way down-doesn't feel like a baseball anymore.  Maybe I'm getting there slowly. 

Remington25

Awesome Ozy!

I'm glad to hear you may be turning the corner.  Please keep us up to date as we are all pulling for you to continue feeling better!

ozymandible

Remington25 said:

Awesome Ozy!

I'm glad to hear you may be turning the corner.  Please keep us up to date as we are all pulling for you to continue feeling better!

Thank you.

Thank you.

ozymandible

Well, I turned the corner and

Well, I turned the corner and had to make a quick u-turn because the pain is back!

Had follow up with chemo doc who thinks it's a problem with my neck.

That fits my neck has arthritis in it.

The excruciating pain is all along the occipital nerves on the right side of my head.  

This can be caused by pinched nerve in the neck.

Daughter drove today I was extremely medicated.

Not allowed to take people in with me so no extra eyes and ears.

Chemo doc was mentioning thyroid cancer?  I'm hoping she misread her notes or there was an error in the chart.  I haven't had any scans since before chemo and rads so how would they know?

Anyway, not going to trip on this because I haven't been scanned since treatment stopped.  It could be a booboo in the chart. One day the chemo nurse tried to send me home with a pump! (That was not part of my therapy)

There are other things piling up that are not germane to the discussion.

My plate is so full.  I want to get away from the table for a while I'm stuffed already.

wbcgaruss

ozymandible said:

Well, I turned the corner and

Well, I turned the corner and had to make a quick u-turn because the pain is back!

Had follow up with chemo doc who thinks it's a problem with my neck.

That fits my neck has arthritis in it.

The excruciating pain is all along the occipital nerves on the right side of my head.  

This can be caused by pinched nerve in the neck.

Daughter drove today I was extremely medicated.

Not allowed to take people in with me so no extra eyes and ears.

Chemo doc was mentioning thyroid cancer?  I'm hoping she misread her notes or there was an error in the chart.  I haven't had any scans since before chemo and rads so how would they know?

Anyway, not going to trip on this because I haven't been scanned since treatment stopped.  It could be a booboo in the chart. One day the chemo nurse tried to send me home with a pump! (That was not part of my therapy)

There are other things piling up that are not germane to the discussion.

My plate is so full.  I want to get away from the table for a while I'm stuffed already.

Well ozy It's Just

One more thing to deal with.
Sorry that you have so much pain and have to deal with this.
It could certainly could be your arthritis kicking up or a pinched nerve or both.
I don't know why in the world your chemo doc would be talking thyroid cancer.
Previous to the start of your treatment you had a pet scan and it would have been noted and dealt with then.
If she is suspecting thyroid cancer you need a CAT Scan with dye to see if anything is going on so why didn't she order one.
Then if anything is unusual a biopsy is done to verify or not for cancer or not and the type.
You know the routine.
It just seems odd that she would talk about it and not be concerned enough to schedule a scan.
Sometimes things are said by even professionals that just don't fit.
Also if you are fresh out of treatment your course of treatment would probably have gotten rid of all cancer in that area even if not directly treated or at least suppressed it.
So you have a lot going on right now but if you think there is any validity to this I would get a scan to be sure.
In the meantime deal with what you have to deal with one thing at a time.
I am sure you have other doctors involved in your treatment I would see another for an opinion and evaluation.
But I don't think I would ignore it but don't dwell on it.
If your pain is that bad there is a problem and I would continue to try to find out what it is.
You certainly have had a time of it like most of us.
Cancer and treatment is a rough road with even rougher sections and a few detours.
Stay strong, hang in there, you will get through this I know you will and get to where you feel good again.

Wishing you the best-Take care-God Bless-Russ

 

 

ozymandible

wbcgaruss said:

Well ozy It's Just

One more thing to deal with.
Sorry that you have so much pain and have to deal with this.
It could certainly could be your arthritis kicking up or a pinched nerve or both.
I don't know why in the world your chemo doc would be talking thyroid cancer.
Previous to the start of your treatment you had a pet scan and it would have been noted and dealt with then.
If she is suspecting thyroid cancer you need a CAT Scan with dye to see if anything is going on so why didn't she order one.
Then if anything is unusual a biopsy is done to verify or not for cancer or not and the type.
You know the routine.
It just seems odd that she would talk about it and not be concerned enough to schedule a scan.
Sometimes things are said by even professionals that just don't fit.
Also if you are fresh out of treatment your course of treatment would probably have gotten rid of all cancer in that area even if not directly treated or at least suppressed it.
So you have a lot going on right now but if you think there is any validity to this I would get a scan to be sure.
In the meantime deal with what you have to deal with one thing at a time.
I am sure you have other doctors involved in your treatment I would see another for an opinion and evaluation.
But I don't think I would ignore it but don't dwell on it.
If your pain is that bad there is a problem and I would continue to try to find out what it is.
You certainly have had a time of it like most of us.
Cancer and treatment is a rough road with even rougher sections and a few detours.
Stay strong, hang in there, you will get through this I know you will and get to where you feel good again.

Wishing you the best-Take care-God Bless-Russ

 

 

"Also if you are fresh out of

"Also if you are fresh out of treatment your course of treatment would probably have gotten rid of all cancer in that area even if not directly treated or at least suppressed it."

 

Yeah, that's exactly what I thought!  Maybe an error in the chart or she misread notes?  Beats me.  Eventually I'll see my ENT surgeon so I'll be getting another set of eyes on it.

 

She is scheduling a CT scan I just have to wait for the phone call.   I'm glad the PEG is still there.  I'm still doing soup, smoothies and oatmeal but chewing hurts now and so does exercise for jaw and neck but I'm still doing them.

 

Remember that kids game Chutes and Ladders?  I got pretty far and then fell down the chute!  

 

She called in more gabapentin because she's increasing the dose and she wrote more norco for me.  I have to send one of my kids to the pharmacy I'm too rekt.

 

Thank you for your response.  Getting a little stressed and discouraged but I probably worry too much and borrow trouble.

 

 

wbcgaruss

ozymandible said:

"Also if you are fresh out of

"Also if you are fresh out of treatment your course of treatment would probably have gotten rid of all cancer in that area even if not directly treated or at least suppressed it."

 

Yeah, that's exactly what I thought!  Maybe an error in the chart or she misread notes?  Beats me.  Eventually I'll see my ENT surgeon so I'll be getting another set of eyes on it.

 

She is scheduling a CT scan I just have to wait for the phone call.   I'm glad the PEG is still there.  I'm still doing soup, smoothies and oatmeal but chewing hurts now and so does exercise for jaw and neck but I'm still doing them.

 

Remember that kids game Chutes and Ladders?  I got pretty far and then fell down the chute!  

 

She called in more gabapentin because she's increasing the dose and she wrote more norco for me.  I have to send one of my kids to the pharmacy I'm too rekt.

 

Thank you for your response.  Getting a little stressed and discouraged but I probably worry too much and borrow trouble.

 

 

ozy I Know

Where you're at.
I have had difficult treatments, recoveries, and setbacks.
I was so weak at one period in my last episode that the nurses had the alarm set on my hospital bed and I had to use a walker and they had to be with me.
Not 100% my choice, in fact not my choice at all but they were protecting me and caring for me.
I knew they were right I was in bad shape.
This continued also at the rehab hospital I went to next for 10 days.
But I have had many victories too.
I got back home and recovered pretty good considering.
So I know what you mean when you say you are Rekt this whole thing beats you up mentally and physically and you feel drained.
We don't know what's ahead but trust in God, Trust in the Lord and he will get you through.
The hard part for us is the unknown.
It's nice to be in control and have a schedule and know what's coming up but cancer takes that away from us.
It seems like the evil little thing dominating too much of our life till we get rid of the evil little rascal.
I realize I can't do much for you or other folks on here but we support each other as best as we can.
We have good medical treatment and support and support from family and friends and places like this.
But the battle itself is all ours alone and it's not easy.
I was in the black tunnel but finally got to the end and into the light again and you will too.
Pullin for ya and all the folks on here struggling and letting you all know the victory will be yours.

Check out this song

"He Sees What We Don't"  You only see your valleys but he sees the mountain you'll be standing on  https://www.youtube.com/watch?v=bzYcn85XjUY

 

Prayers your way and for all the folks here on the CSN H&N forum Wishing You The Best-Take Care-God Bless-Russ

 

 

 

ozymandible

Just a quickie tip that

Just a quickie tip that helped me for swallowing pills.

I cooked some extra watery oatmeal and took the pills with the liquid part that was kind of slimy like okra.

It worked very well and the pills went right down.

 

ozymandible

wbcgaruss said:

ozy I Know

Where you're at.
I have had difficult treatments, recoveries, and setbacks.
I was so weak at one period in my last episode that the nurses had the alarm set on my hospital bed and I had to use a walker and they had to be with me.
Not 100% my choice, in fact not my choice at all but they were protecting me and caring for me.
I knew they were right I was in bad shape.
This continued also at the rehab hospital I went to next for 10 days.
But I have had many victories too.
I got back home and recovered pretty good considering.
So I know what you mean when you say you are Rekt this whole thing beats you up mentally and physically and you feel drained.
We don't know what's ahead but trust in God, Trust in the Lord and he will get you through.
The hard part for us is the unknown.
It's nice to be in control and have a schedule and know what's coming up but cancer takes that away from us.
It seems like the evil little thing dominating too much of our life till we get rid of the evil little rascal.
I realize I can't do much for you or other folks on here but we support each other as best as we can.
We have good medical treatment and support and support from family and friends and places like this.
But the battle itself is all ours alone and it's not easy.
I was in the black tunnel but finally got to the end and into the light again and you will too.
Pullin for ya and all the folks on here struggling and letting you all know the victory will be yours.

Check out this song

"He Sees What We Don't"  You only see your valleys but he sees the mountain you'll be standing on  https://www.youtube.com/watch?v=bzYcn85XjUY

 

Prayers your way and for all the folks here on the CSN H&N forum Wishing You The Best-Take Care-God Bless-Russ

 

 

 

Thank you Russ.

Thank you Russ.

 

(and lurkers.  Hi!)

ozymandible

I finally got hold of the

I finally got hold of the lymphedema clinic.  They don't have any openings until December!

There is another place that I went to for PT that is closer to my house.  I might call them and see if they have lymph people and if they can get me in sooner.  If so, I'll try and get another referral.

Still doing jaw/neck exercises and lymph massage.  Some days it doesn't feel like it does anything though.  Sometimes my neck is way worse than other times. I wonder if I sleep wrong, or if it was something I ate or what too much liquid?

My boy is going to the store for me and maybe he'll take my daughter out of the house for a while she needs a break.

Hanging in there.

wbcgaruss

ozymandible said:

I finally got hold of the

I finally got hold of the lymphedema clinic.  They don't have any openings until December!

There is another place that I went to for PT that is closer to my house.  I might call them and see if they have lymph people and if they can get me in sooner.  If so, I'll try and get another referral.

Still doing jaw/neck exercises and lymph massage.  Some days it doesn't feel like it does anything though.  Sometimes my neck is way worse than other times. I wonder if I sleep wrong, or if it was something I ate or what too much liquid?

My boy is going to the store for me and maybe he'll take my daughter out of the house for a while she needs a break.

Hanging in there.

December!!

My oh my till then your lymphedema will probably resolve itself.
And since you are doing exercises and lymph massage maybe sooner.
Sometimes I am not sure what it is but I have an idea that it makes our bodies and body parts susceptible
to odd happening and problems.
Sometimes you have a day where you just don't feel right all day and weird and lousy.
After all, we just had radiation equivalent to being near a small nuclear bomb detonation.
And had chemicals pumped into us that I wouldn't even wish on a dog.
I think your body just has a lot to settle out and rid itself of and just get readjusted and get back to almost a true normal.
It takes time.
I am glad you got a couple of good kids helpin ya.
Did the daughter need a break from the cancer idea or a break from mom for a bit?
Heh, Heh.
Take Care-God Bless-Russ

 

 

 

ozymandible

Well we're cooped up in our

Well we're cooped up in our house so I'm sure she needs a change of scenery as well as a break from me.  It doesn't hurt my feelings one bit.

I agree, by December the lymph thing might be resolved or at least halfway manageable.

 

wbcgaruss

Actually I Was

Just trying to kid around a little we all need a break now and then. Take care God-bless 

ozymandible

I know.
No worries.

I know.

No worries.

Dagney1924

ozymandible said:

Well we're cooped up in our

Well we're cooped up in our house so I'm sure she needs a change of scenery as well as a break from me.  It doesn't hurt my feelings one bit.

I agree, by December the lymph thing might be resolved or at least halfway manageable.

 

Lymphademia

Hi! I had lymphademia also. Had an expert massage for 30 visits. I was introduced to this massage machine. Insurance will pay and the balance can be paid in installment. Also have a head compact to wear at night, don’t know proper term for it..

 

Flexitouch Plus works by sequentially inflating and deflating its chambers to create a gentle, wave-like motion that directs lymph fluid from the impaired area toward healthy regions of the body. The fluid is then naturally absorbed and processed by the body.

 

https://tactilemedical.com/our-lymphedema-solutions/for-the-lower-body/flexitouch-plus/

 

 

ozymandible

Dagney1924 said:

Lymphademia

Hi! I had lymphademia also. Had an expert massage for 30 visits. I was introduced to this massage machine. Insurance will pay and the balance can be paid in installment. Also have a head compact to wear at night, don’t know proper term for it..

 

Flexitouch Plus works by sequentially inflating and deflating its chambers to create a gentle, wave-like motion that directs lymph fluid from the impaired area toward healthy regions of the body. The fluid is then naturally absorbed and processed by the body.

 

https://tactilemedical.com/our-lymphedema-solutions/for-the-lower-body/flexitouch-plus/

 

 

Thank you.

Thank you.

ozymandible

Waiting on insurance to

Waiting on insurance to approve PET scan.  Too many things up in the air right now.  Feel like my life or what's left of it is on hold.  Wanting to move out of state soon but can't really make the effort until I'm clear for a while.  

wbcgaruss

Well ozy

It looks like you are at another point we all have many times in our lives-Wait.
It's tough to wait on things but sometimes it can't be helped.
So you are on hold but have not finished just paused a bit.
I am sure they will approve it with your medical history of this cancer battle.
Wishing You The Best-Glad you're still at it-Take Care-God Bless-Russ

 

ozymandible

I finally had PET and CT with

I finally had PET and CT with contrast.  Some hot spots.  My surgeon at UCSF will review.  He referred me to the pain management doctor for this occipital neuralgia I've been cursed with and I finally got to see a lymphedema specialist at UCSF who showed me how to do the massage.  My daughter says I look a lot better but I'm not seeing it.  I accidentally slammed my jaw with the hand held shower and got rid of one lump.  Hurt like the devil though.  Constant excruciating pain is ruling over me now.  Lost in a roman wilderness of pain.  Sorry Jim.  It's been difficult to keep up with nutrition but I'm doing the best I can.

Going to watch birdie vision with my cat now.

wbcgaruss

OK, ozy It Seems

You are finally making some headway getting your PET scan and having it looked over by your surgeon he should be
very familiar with scans to define what is going on if anything.
Sorry, you are struggling with pain and neuralgia.
I looked it up and it is caused by irritation or damage to the nerve which probably happened during your operation.
Also, you finally got to see a lymphedema specialist and got some therapy and instructions.
Glad you got rid of a lump but an interesting way to do it.
Hang in there on all fronts and keep your nutrition up this cancer treatment recovery is not always smooth or short but you will get there.
Take care-God Bless-Russ