Noob with floor of mouth cancer

ozymandible

Yeah, if I need pain meds to

Yeah, if I need pain meds to eat and do the exercises I'll take them because eating and exercising is critical.  I'm just kicking and screaming about having to slow down sooner than I thought because I have to kind of baby this PICC line(no heavy lifting, yada, yada)too.

Daughter and I are cooking some things ahead for the next week or two so we don't get slammed everyday on dinner prep.  Enchiladas and breakfast casserole.  I feel way better today than Friday and Saturday so I can help her.  Maybe that two day break is helping more than I thought.

I wonder if muscle relaxer would help the jaw?  I'll have to try and post the results. 

ozymandible

Quick update.  5 rads down

Quick update.  5 rads down and 28 more to go.  Spoke with NPs on chemo AND rad side.  Had bloodwork done bloodwork ok and took first chemo well.  Spoke with rad NP about these headaches on the right side of my head.  She confirmed my suspicions that they are caused by rads.  Told me it was just fine if I had to take pain meds to eat and do swallowing and stretching exercise.  She says I do have lymphedema and since I couldn't get appt with UCSF speech therapist she will refer me to a speech therapist who works with lymphedema too but really all I can do is massage several times a day in addition to exercising.  Going to do that several times a day.  

Still eating okay but the buffalo chicken strips I had for lunch had just a little extra bite to them so...

Still doing the manuka honey before and after rads, calendula cream immediately after, mometasone furoate cream in the afternoon and after evening bath and make sure creams are washed off in the AM before rads so I don't get any maillard reaction(B52's "pass the tanning butter!")

For headache up to 800 mg ibuprofen if I'm driving.  If I'm home I add 600 mg gabapentin and/or half a vicodin only as needed.  Some days worse than others.

Will update after 2nd chemo if not too wiped out.

 

Hope I can get that PEG in before the month is out.  

wbcgaruss

ozymandible said:

Quick update.  5 rads down

Quick update.  5 rads down and 28 more to go.  Spoke with NPs on chemo AND rad side.  Had bloodwork done bloodwork ok and took first chemo well.  Spoke with rad NP about these headaches on the right side of my head.  She confirmed my suspicions that they are caused by rads.  Told me it was just fine if I had to take pain meds to eat and do swallowing and stretching exercise.  She says I do have lymphedema and since I couldn't get appt with UCSF speech therapist she will refer me to a speech therapist who works with lymphedema too but really all I can do is massage several times a day in addition to exercising.  Going to do that several times a day.  

Still eating okay but the buffalo chicken strips I had for lunch had just a little extra bite to them so...

Still doing the manuka honey before and after rads, calendula cream immediately after, mometasone furoate cream in the afternoon and after evening bath and make sure creams are washed off in the AM before rads so I don't get any maillard reaction(B52's "pass the tanning butter!")

For headache up to 800 mg ibuprofen if I'm driving.  If I'm home I add 600 mg gabapentin and/or half a vicodin only as needed.  Some days worse than others.

Will update after 2nd chemo if not too wiped out.

 

Hope I can get that PEG in before the month is out.  

OK ozy

Thanks for the update. Sounds like you and your team are right on top of things and they are very responsive. I didn't think anyone got lymphedema quite this soon but if you do the massaging it should stay under control. Here is a great video that covers lymphatic drainage  https://www.youtube.com/watch?v=VQdLZ26r-rU

Take Care-God Bless-Russ

ozymandible

wbcgaruss said:

OK ozy

Thanks for the update. Sounds like you and your team are right on top of things and they are very responsive. I didn't think anyone got lymphedema quite this soon but if you do the massaging it should stay under control. Here is a great video that covers lymphatic drainage  https://www.youtube.com/watch?v=VQdLZ26r-rU

Take Care-God Bless-Russ

Thank you Russ.  That is a

Thank you Russ.  That is a very good video.  That's the way I've been doing the massages and I think it might be helping.

ozymandible

2nd chemo okay so far not

2nd chemo okay so far not even a hint of nausea.  I had a different nurse this time though and she tried to send me home with a 48 hour pump!  She made a mistake. So did I.  Two in fact.  I forgot how to plug the pump back in after I pee(eyeroll-wonder how I even found my way back to the chair)and didn't have them put the extra thingie on to keep the PICC line from flopping around because I wanted to hurry home.  Dummy.  I put a bandaid on it when I got home.  I washed my hands thoroughly before.  The critical part is still sealed up.

We're having enchiladas rice beans and coconut flan.  Can you tell we like enchiladas around here? 

Radiation nurse/office clerk? I know her from way back in the day walked up my referral for lymphedema speech therapist and offered me tube feeds again.  I have three cases here and not really hurting for money right now so I told her maybe save it for someone who is truly in need.  She always was a sweetie. 

SuzJ

I hate to do this..

But I did all mine, on Tylenol, and liquid Lidocaine.

Yes, I hurt, but not so bad, besides I hate "losing my mind" I rather be in minimal pain and keep my head.. make sense?

ozymandible

SuzJ said:

I hate to do this..

But I did all mine, on Tylenol, and liquid Lidocaine.

Yes, I hurt, but not so bad, besides I hate "losing my mind" I rather be in minimal pain and keep my head.. make sense?

Yes, it does make sense. 

Yes, it does make sense.  Sometimes I do get kind of out of it when I'm on too many meds.  Trying to take them only at home and never anything stronger than NSAIDS when I drive.  I still have viscous lidocaine from presurgery days.  I can water it down and swish if I get sores maybe.  Rad folks said they would give me magic mouthwash when I need it.  I think it's mostly from muscular, lymph and rads at this point.

I really need to find a good balance.  I tend to get more distracted by the pain than the pain meds.  I've had to do without pain meds with decades of back pain so I have a high pain threshold.  If I have to resort to pain meds I really do need them.

ozymandible

8 rads down, 25 more to go, I

8 rads down, 25 more to go, I think 5 more chemos.  The PICC line continues to be problematic.  At the end of the day it is oozing milky yellow fluid that is reabsorbed in the night by the little pad around the catheter. I am having to get it changed almost daily.  The nurse who changed my dressing the last two times said it was probably lymph fluid as I'm showing no signs of infection.  I guess I might have to take it easy on the weekends instead of doing lymphatic massage whenever I get a spare moment.

The miserable headache I got at the end of last week is back but not as bad.  Must have been worse the first week because of initial loading dose of chemo. 

The seeing eye kid and I have been cooking like mad.  We're planning a barbecue while I can still eat. The boy will make an appearance too. Burgers, dogs, potato salad, curried ricearoni artichoke salad, chips and salsa, baked beans, chocolate chip cookies and banana split cake.  We've been having mexican food all week with homemade tortillas!

Looking forward to the weekend.

ozymandible

Oh forgot to say...

Oh forgot to say...

Nurse thinks my awful headache at the end of the week is due to the antinausea meds.  She said they can cause headaches.  They seem to be the worst after I've taken that stuff for a couple days.

Another glorious stay at home weekend.   Supposed to get extremely hot next week.  Strangely enough I'm looking forward to it.  Shivering underneath a down type comforter is just too weird for the middle of June.  Kind of glad not to be getting treatment in the winter.  We have lots of easy stuff to eat and a lot of already made stuff so will just try and relax and stay cool next week.

Okay-see you later! 

 

wbcgaruss

Sounds Like

You are set for food and are now in the routine of treatment. And now the fun of dealing with the side problems of cancer and treatment and a problematic PICC line and effects from medications. And then after treatment leftover effects from rads and chemo, it seems we are all left with something but I hoping for you that anything is minimal. It sounds like you are having cold spells. I think I had them and short hot spells too. I have one question and I may have missed something here. Who is "The Seeing Eye Kid" and why do you refer to him as such? Other than that-Wishing You The Best-Take Care-God Bless-Russ

 

ozymandible

The seeing eye kid is my 20

The seeing eye kid is my 20 year old daughter.  My husband and I called her the seeing eye kid after I got glaucoma last year.  We counted on her sharp young eyes to help us find things we dropped.  The Boy is my 25 year old son.  

The cold thing is because of the weather.  It is still in the forties sometimes at night here.  Very unusual for SF Bay Area in June.

wbcgaruss

Well That

Explains everything. I understand now thanks. I am what they call a Glaucoma suspect myself because I have had increased eye pressure for years and take a drop of meds in each eye once a day to keep my pressures in the normal range. Take Care-God Bless-Russ

ozymandible

Blood work today and follow

Blood work today and follow up with chemo NP.  Blood looks good.  Have had just incapacitating headaches and constipation the last two weekends which she thinks are due to the antinausea drug Zofran.  She told me to just take Compazine for nausea instead.  If my headaches are going to be this bad I think I'd rather just barf and be done with it. (I know it's not that easy but that's how bad these headaches are). Aside from that nothing new.

 

Over and out. 

ozymandible

Well as of tomorrow I will be

Well as of tomorrow I will be 13 out of 33 rads and 3 out of 8 chemos.  My mouth is starting to hurt a little and feel sandpapery already. Already had to bust out the lidocaine.

On a happier note, no nausea from chemo this week.  All I took was one compazine the night I had chemo.  No Zofran per chemo NP.  No nausea no headache.  Yay!  Might be able to do something productive ths weekend during a cool morning or evening out of the sun.  Can still eat but investigating Boost as an on the go emergency snack.  (yuck). Heehee.  They let me have a sample at the radiation place.  Maybe it has gotten better since the first time my husband had cancer 12 years ago.  I doubt it but you never know.  If I can't taste it maybe I can down it like icky cough syrup.

 

PICC line continues to be problematic.  I have it checked almost daily.  Still leaking.  Chemo nurse said it might have to be replaced.  

Nothing else new to add.  Hanging in there one day at a time. 

 

Ozy

wbcgaruss

Still Here

Following your journey. All seems about average so far. looks like the PICC Line is gonna be your headache for a bit. Maybe that is what needs to be done to straighten it out a replacement. Prayers your way-Take Care-God Bless-Russ

ozymandible

wbcgaruss said:

Still Here

Following your journey. All seems about average so far. looks like the PICC Line is gonna be your headache for a bit. Maybe that is what needs to be done to straighten it out a replacement. Prayers your way-Take Care-God Bless-Russ

Thanks Russ.

Thanks Russ.

I really appreciate what you do for everyone here and all of the valuable information you provide.

 

Ozy

ozymandible

Oops.  Forgot to add hair

Oops.  Forgot to add hair loss is beginning at the back of my neck now.  I forgot because it really is the least of my worries at this time.  . It's not massive chunks yet like when my husband had lung cancer or really noticeable just way more than average.  Also having the mucus buildup in the back of my throat so added enough pillows to be able to elevate myself somewhat.  Don't want to do the pillow fort in the recliner again.  It's summertime and our living room is extremely hot.

I am using acetylcysteine in a sinus rinse(and taking a small amount orally)twice a day to cut the crud.  It is leftover mucomyst that was for use in a nebulizer.  I also add a few drops of lavender oil, tea tree oil and some colloidal silver in addition to the sinus rinse packet of baking soda and salt.

I am going to have to really concentrate on my exercises.  I can really feel my throat wanting to rebel against me now.  They told me I should not cough but I really do have crud building up in there it's not just nerve irritation from surgery like they told me.  I know coughing isn't helping they say it adds to the scar tissue but I can't help it.

The SLP told me the masako tongue hold exercise where you stick out your tongue and hold it between your teeth is critical.  After being in radiation therapy I understand why.  They gave me a mouth guard in addition to my mask.  It has two little prongs that stick out through the holes in the mask.

It helps hold my head still  and is supposed to protect teeth and tongue but tongue still feels awful.  It holds my mouth wide open with my tongue between the plastic guards and the Masako Tongue Hold exercise prepared me for this.  It was hard to swallow with my mouth wide open. One day I thought I broke my mouth guard because I kept biting down so hard on ot when I was trying to swallow.  The adjusted it smaller so Im not having so much trouble swallowing anymore.

Seeing eye kid and I made banana pudding and jello last night and put the mason jar of potato soup mix back out.  I believe the days of soft food and smoothies and poached eggs are rapidly approaching now.  I'll have to get back to the superthread and read the soft food list again.  Gonna have to bust out the immersion blender again in addition to the lidocaine.

Wonder what they're finally going to wind up doing about this dang PICC line?

Anyway soon wandering over to the clinic.  I am very thankful to be able to get treatment but really not looking forward to the pain.  I was actually more afraid of radiation and chemo than the surgery I got.  Can you believe it?  Ha!

See you guys later.  (I know you're lurking I can count the views.) Thanks for coming along with me. 

wbcgaruss

Well You Are

Certainly having your time with it. And you are making it obvious things are starting to change. The coughing and thick mucus we are all familiar with it. Hang in there with your exercises and your fortitude going forward. Best of luck and Prayers as you move forward in dealing with this whole situation. I can tell the PICC line is on your mind and I sincerely hope they have a solution for it. But it could be you have to continue with it and it will be a maintenance issue all along till you are done. But it sounds also like a possible redo of it. You are right about the followers and view counts but few responses. It often wondered me why more folks don't share their help and experiences as they surely have so much to give. Glad they are here but I would urge others to add in their written support and shared experiences with this situation and many other posts and situations on CSN H&N. It will help others and it will help you by sharing and helping others in their time of need-Take Care-God Bless-Russ

LitlCJdoll

ozymandible said:

Oops.  Forgot to add hair

Oops.  Forgot to add hair loss is beginning at the back of my neck now.  I forgot because it really is the least of my worries at this time.  . It's not massive chunks yet like when my husband had lung cancer or really noticeable just way more than average.  Also having the mucus buildup in the back of my throat so added enough pillows to be able to elevate myself somewhat.  Don't want to do the pillow fort in the recliner again.  It's summertime and our living room is extremely hot.

I am using acetylcysteine in a sinus rinse(and taking a small amount orally)twice a day to cut the crud.  It is leftover mucomyst that was for use in a nebulizer.  I also add a few drops of lavender oil, tea tree oil and some colloidal silver in addition to the sinus rinse packet of baking soda and salt.

I am going to have to really concentrate on my exercises.  I can really feel my throat wanting to rebel against me now.  They told me I should not cough but I really do have crud building up in there it's not just nerve irritation from surgery like they told me.  I know coughing isn't helping they say it adds to the scar tissue but I can't help it.

The SLP told me the masako tongue hold exercise where you stick out your tongue and hold it between your teeth is critical.  After being in radiation therapy I understand why.  They gave me a mouth guard in addition to my mask.  It has two little prongs that stick out through the holes in the mask.

It helps hold my head still  and is supposed to protect teeth and tongue but tongue still feels awful.  It holds my mouth wide open with my tongue between the plastic guards and the Masako Tongue Hold exercise prepared me for this.  It was hard to swallow with my mouth wide open. One day I thought I broke my mouth guard because I kept biting down so hard on ot when I was trying to swallow.  The adjusted it smaller so Im not having so much trouble swallowing anymore.

Seeing eye kid and I made banana pudding and jello last night and put the mason jar of potato soup mix back out.  I believe the days of soft food and smoothies and poached eggs are rapidly approaching now.  I'll have to get back to the superthread and read the soft food list again.  Gonna have to bust out the immersion blender again in addition to the lidocaine.

Wonder what they're finally going to wind up doing about this dang PICC line?

Anyway soon wandering over to the clinic.  I am very thankful to be able to get treatment but really not looking forward to the pain.  I was actually more afraid of radiation and chemo than the surgery I got.  Can you believe it?  Ha!

See you guys later.  (I know you're lurking I can count the views.) Thanks for coming along with me. 

Hi Ozy,

Hi Ozy,

 

Today was my last day of these antibiotics. I infused this mornings dose, flushed with Heparin and saline both lines ( mine was a double lumen PICC), and even though I still have low grade fever, the home health nurse removed my line.

I have had a PICC line long before cancer, when I has a Sepsis I acquired while inpatient. Coincidentally I was sent home with this same antibiotic, 11 years ago...  And I have had 2 different Port a Carbs as well.

Anyway, we went upstairs to my bedroom and she had me lie upon my hospital bed ( the local Cancer Services gave me this bed, 2 years ago. Its wonderful, only after I bought a 3inch TempurPedic mattress topper for it!!! I bought one for Randall's hospital bed too. But not for his King bed!!!$$$. The Twin XL ones were $200-300. Very worth it !)

Anyway, I had to lie flat and motionless, and remain there motionless for 30 minutes. After removal of the PICC line.

She had me inhale, hold my breathe and it was slowly pulled out. No problem. She applied pressure with a bandage and applied Tegaderm. I am to refrain from using the hand and arm for 2-3 days, so it will heal. 

Because I have no one, she stayed with me to watch for bleeding, for 20 of the 30 minutes. She let herself out and left.

---------------

There was a huge problem putting this one in,. Why? Because I was Dehydrated.  Yes, I was in the hospital and had been for 5 days ( I was in 6 total), but they had stopped giving me IV fluids. Somehow they thought I was getting enough on my own but it wasn't the case. I kept telling them I was slipping back, but nothing changed.  My weight then 70.3 pounds ( its now 69.6.)

The Bedside Team tried Twice in my right arm to place this PICC, and they were very Very upset with my Attending doctor, for allowing me to become so Dehydrated while there in the hospital.  I tried to tell them before they started!!! My veins just collapsed...

So they called my young doctor. He ordered a bolus of Lactated Ringers and they tried again later. First one on the left failed... Bu t finally on 4th try, hey got in.  I was quite tired after that!! 4' tries .... ( a friend of mine is insisting I register complaints about the whole incident. No excuse for me being dehydrated while there )

And once again they took away my fluids, after finally getting the line in.  WTH??!   Next day I went home, day #6.

With your line that's leaking yellowish fluid, I would be concerned.  Are you having any Fevers or chills?  Is the area painful??

Please keep a close watch on it you certainly do not need a serious infection on top of all else.

My nurse today told me I need another Port a Cath. Gee, it would be #3. 

Take good care of yourself, and enlist your family to help too.  I was admitted Twice during my radiation treatments, through the emergency dept each time..  I weighed what I do now.  The techs at the machine were so worried about me, but I'm headstrong and just kept going.. They made me use the Morphine Pump, to keep me swallowing.....

Fight on!

Do not stop, because::

"Whatever doesn't kill you, Will Try Again!!"

Crystal 

Stage III Recurrent HNSqCC

 

ozymandible

What an awful two days.  Well

What an awful two days.  Well, could be worse.  The tube is in.  I had to spend the night. I was kind of mad about it at first but I'm glad I stayed.  Needed help to get up and pee for a while.

I got kind of suspicious though.  I just had labs drawn chemo hydration and all a couple days before at the chemo place.  The hospital folk were claiming I was dehydrated. ???????

My weight going in was 70 kg.  I saw on the goals for today chart that the nurses use that the goal was to bring me up to 75 kg.  It looked like they were going to just pump ten pounds of fluid in me overnight to do that.  I was on a liquid diet already and they stopped my BP lowering diuretic for some reason.  So these factors and placing the BP cuff on my leg tight enough to give me gangrene made my BP over 200.  (They had to do it on my leg because PICC line on one arm and graft/donor site on the other)

My BP is usually in the 120's.  I kept telling them about the diuretic and I need to stop this IV.  The doctor finally took me off the IV in the morning.  Until he did I felt like I had one foot in the grave.  None of that made any sense to me.  I don't recall any bloodwork done.  I don't know why they thought I was dehydrated.

I felt less dehydrated when I got home after finally peeing out all the fluids they forced in me.

On a happier note my PICC line looks fantastic.  The chemo nurse changed my dressing and put gobs of tissue adhesive on there.  No leaks.  Yippee!

Lord have mercy I hate hospitals.  I was afraid they were going to put me on all kinds of exotic new meds for my new BP problem.  I think too many meds are really bad.  

My mouth and everything felt drier and hurt worse at the hospital.  After I got home and cleaned up I felt as good as I did before I went in.  That's kind of scary.  You really have to be your own advocate and watch them and research all conditions and medications.

 Ou of curiosity, I asked the radiation techs what dose I was on.  They told me 200.  Surely no cancer will survive that.  Seems high though.  Yikes.  Going to eat some normal food now.  Hungry like the wolf.