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#147208 - 03/16/12 06:32 PM Re: Treatment has Begun! One week closer to the End! [Re: SoldierWife]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8518
Loc: PA
Congrats on finishing!!!! I know he feels horrible but very very soon things will turn around. Radiation continues to keep working even after tx has ended. In 2 or 3 weeks he should begin to feel a tiny bit better. Then it will be small improvements for the next couple weeks. It can be a frustrating time making progress then taking a couple steps backwards with setbacks.

Keep pushing the nutrition and hydration. Force him to take small sips every single day. If nausea is a problem slow down the feedings and add water. This will help make them easier to tolerate. This is why the feeding pump becomes such a great tool. Can add water to the bag of formula and regulate the speed so its able to be kept down.

Hang in there, the light at the end of the tunnel is in sight! smile
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#147218 - 03/16/12 09:05 PM Re: Treatment has Begun! One week closer to the End! [Re: SoldierWife]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 795
Loc: NY
Right there with you Gayle. I don't know what I would do without my cyber friends and fellow warriors.
I'm sooo glad you updated. Have been thinking of you guys and praying all was well. Hang in there.
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/2012

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#147240 - 03/17/12 01:58 PM Re: Treatment has Begun! One week closer to the End! [Re: KP5]
SoldierWife Offline
Contributing Member (25+ posts)

Registered: 10/31/11
Posts: 32
Loc: Colorado
The roller coaster continues. Can anyone tell me if significant coughing is part of this healing process? Poor guy coughs and coughs. I understand the throat clearing, but this seems more than that. Keeps him from getting any real rest.

Thank you!
_________________________
Gayle, CG to incredible husband, age 53 yrs
DX 10/26/11, never smoked, casual drinker
Stage 4, T2 N3 SCC, right tonsil, node cluster in r. neck
Tx 2-3 cycles induction chemo followed by chemo-radiation 33 treatments w/concurrent cisplatin for six weeks of 7 week treatment
PEG in 02.03.12

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#147241 - 03/17/12 02:07 PM Re: Treatment has Begun! One week closer to the End! [Re: SoldierWife]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8518
Loc: PA
Its probably the thick mucous bothering him. I would cough alot trying to get it out of my windpipe. Many people have rented a suction machine from their medical supply company. Needs a doctors prescription. Every time you take him to the doctor, ask the nurses to suction him out. This will make it easier on him. When coughing so much, your body begins to ache. Im sure he feels lousy enough not to need any more aches and pains. Pick up some Musinex or Robotussin for mucous.

Hang in there, day by day you will very soon begin to see small improvements. Try to begin to set very small daily goals. I would set a goal to walk to the mailbox, then to the end of my street, next down the block and back. Within about 2 weeks, I was walking around the block, enjoying the fresh air. This helps the patient to see their own progress and begin to feel like they have accomplished something.

When the mucous goes away, it will be replaced with dry mouth. Your husband will wake in the night with his tongue stuck to the roof of his mouth. He will need to carry a water bottle with him everywhere. Some members (not me) found success with a medicine pilocarpine (not sure of the spelling). It helps create saliva but it also will make him sweat. Others use biotene products or some disovable strips that they put on the roof of their mouth. That is over the counter in the toothpaste aisle of drug stores.

Best wishes with your husbands continued recovery.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#147242 - 03/17/12 02:48 PM Re: Treatment has Begun! One week closer to the End! [Re: ChristineB]
SoldierWife Offline
Contributing Member (25+ posts)

Registered: 10/31/11
Posts: 32
Loc: Colorado
Thank you Christine! You are right - he is miserable. Said this morning that this has to stop. Thoughts about interactions from mucinex or robitussin with all other drugs he remains on? Probably should consult with doctor to be safe, eh? Our doctor is excellent about responding to emails. I'll kick one off now, but again, now I have some background that it is not uncommon and that an OTC med may help alleviate some of the coughing. Thank you thank you! Have a great Saturday! It is beautiful here and would love to get him out for a walk! Take care! Big Hugs!
_________________________
Gayle, CG to incredible husband, age 53 yrs
DX 10/26/11, never smoked, casual drinker
Stage 4, T2 N3 SCC, right tonsil, node cluster in r. neck
Tx 2-3 cycles induction chemo followed by chemo-radiation 33 treatments w/concurrent cisplatin for six weeks of 7 week treatment
PEG in 02.03.12

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#147243 - 03/17/12 02:55 PM Re: Treatment has Begun! One week closer to the End! [Re: SoldierWife]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 874
Loc: Ohio
Hi, Gayle - it's possible that running a humidifier and sleeping in a more upright position might help. Possible benefit of coughing ... his core muscles will be in good shape. My husband found that out he got back to riding (he coughed a lot, too).
Hope that you both enjoy the day and the walk!


Edited by Maria (03/17/12 02:56 PM)
Edit Reason: typos
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 06/2014 physical exam clear; chest CT's clear of cancer. On thyroid pills. Saliva slowly returning. Life is good.

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#147244 - 03/17/12 03:04 PM Re: Treatment has Begun! One week closer to the End! [Re: Maria]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2604
Loc: TN
Gayle - My son also used a humidifier and slept in a recliner so he could be more elevated. He found that a plant mister helped (has a finer spray than a regular spray bottle) to moisten his mouth at night when he work up. It was easy to reach for and he didn't have to wake up completely to get some relief. Things DO get better.
_________________________
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




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#147247 - 03/17/12 06:02 PM Re: Treatment has Begun! One week closer to the End! [Re: Anne-Marie]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 795
Loc: NY
This was one of the hardest parts for Kevin, and me. I kept thinking he was going to choke to death!! The gagging was awful. Lot's of water is what he did. I would check with your doc, like you said, before adding anything OTC. It may somehow make it worse because it's not like phlegm from a cold that you can dry up. At least I don't think it is. Kevin did find that walking around helped him to cough more of it up. Sleeping upright helped too.
Our friend Cathy on these forums and FB gave us some tablets that help with dry mouth. I will look at the name of them again. You're not ready for them yet, but soon will be. You can get them on Amazon. Will let you know.
Hang in there. Try the outside walk. Just a new scenery.
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/2012

Top
#147269 - 03/18/12 02:58 PM Re: Treatment has Begun! One week closer to the End! [Re: KP5]
SoldierWife Offline
Contributing Member (25+ posts)

Registered: 10/31/11
Posts: 32
Loc: Colorado
Thank you all again! Jerry seems so depressed this morning. As you can imagine, the coughing makes his throat hurt worse and keeps him from getting any solid rest, but hopefully soon, as everyone says, it'll subside. Doc did approve Robitussen yesterday. Not sure if it helped or not yet but may need some time to be effective. He sounds so like he wants to give up and after all of this. I keep trying to note the minute improvements (have to look hard!) The antacids are starting to be effective so at least he does not have heartburn on top of everything else -- small victories, small victories.

I do have concern tho about his not swallowing yet, or even wanting to try. Am I babying him? Is it time for tough love or maybe just more pain meds to get him swallowing again? He is currently on 50mg patch an, 20 mg morphine/oxy.

Thank you everyone!

P.S. He does sleep sitting up mostly -- have one of those chair backs for bed, and he has a humidifier right next to the bed. Thinking I may pull another in from another room and really humidify the room!
_________________________
Gayle, CG to incredible husband, age 53 yrs
DX 10/26/11, never smoked, casual drinker
Stage 4, T2 N3 SCC, right tonsil, node cluster in r. neck
Tx 2-3 cycles induction chemo followed by chemo-radiation 33 treatments w/concurrent cisplatin for six weeks of 7 week treatment
PEG in 02.03.12

Top
#147272 - 03/18/12 04:11 PM Re: Treatment has Begun! One week closer to the End! [Re: SoldierWife]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 874
Loc: Ohio
Gayle -
Remember that the lack activity is contributing to the depression - endorphens aren't getting a boost. I truly belive that walking our old dog every day helped - also it made him feel more worthwhile and needed.
You might also ask him for something - maybe a shoulder rub? If he's anything like my husband, he's feeling like he's not carrying his part of the load. Not true, of course, but this isn't a rational things.
You could ask the doctor about better living through chemistry if the depression part seems to be an ongoing concern. Some pain relievers work well for their job, but don't make you feel fabulous mentally. Yes, ask about the level of pain relieve, too. My husband found the topicals useful, too.
Hum, about the swallowing. If a doctor or physical therapist 'ordered' it, your tough love would just be following up on professional orders. Chain of command sort of thing. That would also mean that the swallowing was specifically address medically, not a bad thing.
Keep the faith, Gayle - try to get a lunch out with a friend sometime and put the burden down for a bit.
Maria


Edited by Maria (03/18/12 04:11 PM)
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 06/2014 physical exam clear; chest CT's clear of cancer. On thyroid pills. Saliva slowly returning. Life is good.

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