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#137432 - 07/28/11 04:11 PM Re: Wondering if it's worth it [Re: Pam M]
morgan44 Offline
Contributing Member (25+ posts)

Registered: 07/08/11
Posts: 33
Loc: VT
Yes, the doc said the headaches might have been a fluke (transfer pain), but if they continued each weekend following 5 full days, they may scale back to 4 days and add those days at the end as one option, or find another Rx that would deal only with headache pain but wouldn't interfere with the other meds. He also said if headaches keep me awake at night, it's more important to get sound sleep, so it was okay to take Tylenol extra strength with the sleep ingredient (starts with a "D" but can't spell it). I haven't had to use any yet.

I'm wondering if I should keep MY comments in this topic, since I'm really past the "wondering if it's worth it" phase (lol). It's fine with me if you want to move it to a more appropriate topic (if you have that capability).


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#137446 - 07/28/11 11:06 PM Re: Wondering if it's worth it [Re: morgan44]
Eva Grayzel Offline
National OC Advocate/Speaker
Contributing Member (25+ posts)

Registered: 06/05/04
Posts: 30
Loc: NJ/PA
Headaches can be incapacitating. No need to live with the pain. Pursue a solution until you find one that works. Don't worry about all the potential causes, because worrying is unproductive. Try taking the time during your day to relax your mind....put yourself first. No one will take care of you, like you can!
_________________________


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#137669 - 08/03/11 03:17 PM Re: Wondering if it's worth it [Re: Eva Grayzel]
EzJim Offline
Patient Advocate (old timer, 2000 posts)

Registered: 06/12/07
Posts: 5260
Loc: Mingo Jct., Ohio
I agree with Eva about the severness of headaches. I get migraines a lot plus the ones I have 24/7 from the ENT putting a hole in my eardrum. I won't complain too much tho because I am alive to feel the pain which is a big plus. These things just laugh at Percocet and Methadone. Added to the tongue, throat, jaw bone and it becomes a part of daily life. Just gotta keep fighting and being stubborn and you are OK. Good luck Morgan and keep up the fight.
_________________________
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here

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#137676 - 08/03/11 05:32 PM Re: Wondering if it's worth it [Re: EzJim]
Eva Grayzel Offline
National OC Advocate/Speaker
Contributing Member (25+ posts)

Registered: 06/05/04
Posts: 30
Loc: NJ/PA
There are many roads to try:
Switch pain meds - Aleve, Advil...
Spend 5 minutes in complete quiet and relax your brain, will the pain away.
Take deep breaths throughout the day
Listen to soothing music
Ask a friend/spouse to rub your temples and your shoulders to release stress
Get a massage
Treat yourself to something you love

Let me know what you try....and we can brainstorm some more...there IS a solution out there for you! Believe that.

_________________________


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#137712 - 08/04/11 02:04 PM Re: Wondering if it's worth it [Re: Eva Grayzel]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4840
Loc: Toronto canada
I find if I have headache pain (very rare but painful when it does happen) I lay down put a cool compress on and that helps me drift off - after a bug Tylenol or advil though! Good luck... And mre power to you for making your way through treatment!
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#137733 - 08/04/11 10:21 PM Re: Wondering if it's worth it [Re: Cheryld]
morgan44 Offline
Contributing Member (25+ posts)

Registered: 07/08/11
Posts: 33
Loc: VT
I haven't had another bout of severe headaches, but I'm now feeling the onslaught of the burning all through my mouth. My lips have taken the biggest hit, with severe dryness leading to cracking and today, my bottom lip is so ripped up it looks like it could bleed at any moment. I have an arsenal of moisturizers that are in constant use. There's one area on my bottom lip and gum directly inside that same area that really looks like it's become more irritated than other areas because of that damned styrofoam bite thingie that is ragged on that edge and presses against that area tightly while I'm under the Big Guy. I'm going to ask tomorrow if they could please file that thing down. (As the adage goes, they can send a man to the moon but... in this case, no one has come up with a more comfortable means of holding a patient's mouth steady and in place? Good grief, even horses have mouth bits that are designed to be comfortable!

Well that's my rant du jour. Always something. This certainly is a lifestyle change.

Still hanging in,
Maggie

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#137743 - 08/05/11 04:35 AM Re: Wondering if it's worth it [Re: morgan44]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4840
Loc: Toronto canada
Wow they used to take a piece of gauze wrap it in Saran wrap and put it between my teeth and my lips to push them out of the line of fire... Maybe they can do the Same for you? Good luck!
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#137753 - 08/05/11 03:04 PM Re: Wondering if it's worth it [Re: Charm2017]
EzJim Offline
Patient Advocate (old timer, 2000 posts)

Registered: 06/12/07
Posts: 5260
Loc: Mingo Jct., Ohio
Not much for me to say except, enjoy each and every day you are alive and remember, life is worth fighting for. A body is a lot tougher than one might think and can heal given the opportunities.
_________________________
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here

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#137792 - 08/06/11 04:05 PM Re: Wondering if it's worth it [Re: Cheryld]
morgan44 Offline
Contributing Member (25+ posts)

Registered: 07/08/11
Posts: 33
Loc: VT
I don't know if they'll go along with any deviation from protocol, including the "tools" they use. But I'll tell ya, something has to be done about my burned lips. Today I woke up with a blister on my lower lip on the opposite side from where the radiation is supposed to be targeted the most. I have to keep my lips constantly sticky with my arsenal of moisturizers, the most effective of which is the Bag Balm but it feels like I'm wearing an extra pair of lips.

I also developed what I think might be thrush, but of course being the weekend won't get to have anyone look in my mouth until Monday. So the recommendation over the phone was to use the mixture of salt/baking soda mouthwash until then. OMG! The salt was TORTURE on my poor burned lips (outside and inside). I'm now using just baking soda, and it seems to help. What were they THINKING?!

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#137800 - 08/06/11 10:25 PM Re: Wondering if it's worth it [Re: morgan44]
Jenslp Offline
Senior Member (100+ posts)

Registered: 11/24/10
Posts: 167
Loc: Seattle WA
Hey there -are your lips completely clean of any type of moisturizer during radiation? I had skin trouble on my chin and lips and kept moistuizer on during radiation treatments and made things so much worse - didn't even think about my chin being in the path of scattered radiation. When I realized what I was doing (after several weeks) I stopped and my lips and chin eased up quite a bit. Got a lecture from the radiation therapists too!
My lips got so swollen that they had to cut the lips out on my mask! Not sure if the solution for you is as easy (all things being relative during the hell of treatment) as it was for me- but I hope so.

I also tried a medicated lip balm by blistex which was cooling and a bit numbing - if you haven't tried it you might want to!
Good luck to you!
_________________________
Jennifer (39)
02/10 SCCa Tongue & Base, HPV-
03/10 Partial Glossectomy & ND 11/10 Revision due to additional nodes 12/20-2/2/11 IMRT & concommitant chemo 2/11 PEG in 3/11 PEG out
Back at work and feeling good 03/24/11!
12/20/11 - 9 month f/u PET/CT - all clear!

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