Pain management question

VivianLee5689

So as some know my husband is diagnosed with Stage IV base of the tongue cancer. He is going in on September 13 to have surgery using the davinci robot. He hates taking pain meds so my question is what pain management strategies have you used. He will start chemo/radiation in 4-6 weeks and may have a neck dissection if that helps. Some of what I read indicates he may be on strong meds for a while. I just am gathering information. Thanks

ditto1

Something will work
not much help as for what your husband may need to get thru this, but a basic theme on this site is do not hesitate to take what is prescribed. Likely the doctors will be the ones to decide but with so many pain meds on the market he should be fine. I have say DX as your husband, but no surgery. My treatment is done for now and waiting for CT in October. He will do fine but yes I never took many pain meds in my life, but I soon learned to take what I needed to make this a more comfortable road trip.

CivilMatt

you can do it
VivianLee5689,

I was stage IVa, SCC, BOT, HPV+, w/one 3.5cm, lymph node (left side of neck).My first treatment was a lateral neck, Jugular Vein dissection, followed by rads and chemo.

I don’t like taking pain medicines but I always was prepared with plenty of pain medications, just in case I needed them. As it turned out, I was lucky and did not need much pain medications during the entire treatment, but I had it for those times when it was unbearable. Treating the pain is far superior to with standing the pain. I was able to sleep better and continue to swallow. Sure it made me sleepy, but who cares. You might check into an anti-anxiety medicine (Lorazapam) too. I experienced my first full blown panic attack during my first PET scan. I made it through ok, but my little pill helped 100% during future scans and radiation treatments.

Today, I am 24 weeks post treatment and take no pain medication, but keep a supply of Lorazapam for scans.

Tell him to try and not be overwhelmed, it truly gets easier and becomes a matter of habit (for lack of a better phrase).

Best,

Matt

Skiffin16

No Heros...
Plain and simple...you do what you have to do to get through treatment and deal with the rest later.

Like Matt said up there^, I also had a range of meds from liquid and pill oxicotin, hydrocodon, percocet, even liquid morphine (tried it, didn't do nothing for me)...

I used what I needed when I need them. But luckily, I didn't go through what some have...others went through less than me...we are all different.

Now going on four years out, I'm doing well...he will also.

If one thing doesn't work, have then try something different.

But if you can't get through treatment because you don't want to take the pain meds...it could be a long slow journey.

Best,
John

blackswampboy

don't much like 'em either
I had percocet for a couple of days following insertion of chemo port and PEG tube. other than that, only ever needed tylenol and magic mouthwash (with lidocaine) for my tonsil cancer. but I only had rads and chemo, no surgery.

hwt

blackswampboy said:

don't much like 'em either
I had percocet for a couple of days following insertion of chemo port and PEG tube. other than that, only ever needed tylenol and magic mouthwash (with lidocaine) for my tonsil cancer. but I only had rads and chemo, no surgery.

Pain
I was always told not to let the pain get ahead of you. I took hydrocodone as needed. Nearing the end of tx I was put on a fentynl patch. When the dose on patch was increased my body told me it was too much. I got off all pain meds as quick as I could simply because I wanted to drive. Like Matt, lorazepan (for anxiety) became my BFF. I would keep what the doctor orders on hand so you have it as needed.

Grandmax4

It's hard to know
how much pain your husband will have. On November 2,2011 I had surgery using the davinci robot to remove my epiglottis. I was cut from ear to ear in the top fold of my neck....lymph nodes were also removed, but came back NED so radiation and chemo was not needed. Surpriseingly, I had little pain in the hospital or here at home..my Dr gave me liquid oxycodene which I kept filled in case. After about 6 weeks, he prescribed pills that I could only take if crushed ( swallow issues ). Now, 10 months later I still have liquid and pills in frige. I believe the surgery time, the exactness, and the heal time is far superior than the old way of surgery...I did not have staples or stitches, my neck was glued back together unreal..no one even notices my scar, it's so thin and hidden in the crease of my neck.
Please tell your husband best wishes for me , even if he has to take pain meds, it's not forever..

blackswampboy

hwt said:

Pain
I was always told not to let the pain get ahead of you. I took hydrocodone as needed. Nearing the end of tx I was put on a fentynl patch. When the dose on patch was increased my body told me it was too much. I got off all pain meds as quick as I could simply because I wanted to drive. Like Matt, lorazepan (for anxiety) became my BFF. I would keep what the doctor orders on hand so you have it as needed.

good advice
pardon, didn't mean to suggest that pain meds aren't important when needed.
just saying that pain is not necessarily a big problem.

But I've had vomiting, insane mucous, erbitux rash, infections, thrush, fatigue, mojave-desert mouth--the works. just not much pain.
I also used lorazepam (ativan) for vomiting and it helped there, let me get more than an hour of sleep at a time. but that stuff is habit-forming too, so I stopped when the vomiting went away.
I still use magic mouthwash for sore mouth.

phrannie51

Vivian.....you're probably picking up the general theme
about no hero's and everyone is different....I didn't need anything for pain but Alieve until I started the last three chemos (that means 35 rads and 3 chemo's where I simply did not need anything). The last three chemos have left me needing pain mgmt for the mouth sores...and even then it's just Loratab...not one of the more powerful pain killers.

I think it's understanding that what is ok today, may not be ok tomorrow, things can and do change so fast....and holding out hoping he can just get thru the day isn't worth the pain suffered...Dr.'s know this HNC isn't for sissies, and more than willing to help us get thru the painful parts.

p

Tim6003

phrannie51 said:

Vivian.....you're probably picking up the general theme
about no hero's and everyone is different....I didn't need anything for pain but Alieve until I started the last three chemos (that means 35 rads and 3 chemo's where I simply did not need anything). The last three chemos have left me needing pain mgmt for the mouth sores...and even then it's just Loratab...not one of the more powerful pain killers.

I think it's understanding that what is ok today, may not be ok tomorrow, things can and do change so fast....and holding out hoping he can just get thru the day isn't worth the pain suffered...Dr.'s know this HNC isn't for sissies, and more than willing to help us get thru the painful parts.

p

Well durn ...
I feel like the needy one in this bunch. I like to think I am a tough guy...but I will tell you right up front ....pain was horrible with me ...but the meds took care of it. I read the above and don't know why my pain was so bad (or maybe I am just not good with pain) ..but like they say no heros here. I did hate taking hte pain meds!!

At my worst I was taking 6-7 Narco a day and I wore two fentynal patches (25mcg and 12mcg) ...and I would not have been able to make it without them.

7 months out I still have a stash of Utlram I take as needed. I got off all pain meds about 4 months out from treatments, but find I still need one or two a day pretty often for a stubborn pain in my throat. Oncologist says persons body is different ...but they also say to "stay ahead of the pain".

Keep us posted, whispered a prayer all is going well and will be well ...

Best,

Tim

ToBeGolden

Pain Meds are Awful
(Almost) everyone hates pain meds; they make you feel awful. We Cancer Combatants only take pain meds because they are absolutely necessary to get thru the ordeal. And we get off them as soon as we can.

Having said that, I (along with almost every patient on these boards) have taken a truck load of pain meds. My choice for radiation was hydrocodone every four hours. This was around the clock, six doses per day.

I did not need the patch; but I would not refuse the patch if it were needed. I don't think many cancer patients over medicate. They use just what they need. We didn't ask for the tumor, and we did not ask for the pain. There is absolutely no shame in taking pain meds.

Vivian, I can make this prediction: Your husband will not take pain meds before they are needed. He will not take them longer than is needed. And he will not take more than is needed. And it doesn't matter whether your husband only needs Tylenol or if he needs a dozen fenytal patches. In the end, the only thing that's important is to make it to the end of the treatment. Rick.

VivianLee5689

ToBeGolden said:

Pain Meds are Awful
(Almost) everyone hates pain meds; they make you feel awful. We Cancer Combatants only take pain meds because they are absolutely necessary to get thru the ordeal. And we get off them as soon as we can.

Having said that, I (along with almost every patient on these boards) have taken a truck load of pain meds. My choice for radiation was hydrocodone every four hours. This was around the clock, six doses per day.

I did not need the patch; but I would not refuse the patch if it were needed. I don't think many cancer patients over medicate. They use just what they need. We didn't ask for the tumor, and we did not ask for the pain. There is absolutely no shame in taking pain meds.

Vivian, I can make this prediction: Your husband will not take pain meds before they are needed. He will not take them longer than is needed. And he will not take more than is needed. And it doesn't matter whether your husband only needs Tylenol or if he needs a dozen fenytal patches. In the end, the only thing that's important is to make it to the end of the treatment. Rick.

Thanks
Thanks everyone for your comments. I worry more about him trying to tough it out and really letting the pain get ahead of him. He had biopsies on the inside of his mouth and throat over two and a half weeks ago and he still has sores in his mouth and so much pain he has difficulty eating and he hasn't even started treatment yet. I hate seeing him in pain and especially if I know there are quality medications to ease that pain. I will pass along the information to him. Hopefully coming from others who have walked in his shoes he will decide to accept pharmacological help.

fisrpotpe

VivianLee5689 said:

Thanks
Thanks everyone for your comments. I worry more about him trying to tough it out and really letting the pain get ahead of him. He had biopsies on the inside of his mouth and throat over two and a half weeks ago and he still has sores in his mouth and so much pain he has difficulty eating and he hasn't even started treatment yet. I hate seeing him in pain and especially if I know there are quality medications to ease that pain. I will pass along the information to him. Hopefully coming from others who have walked in his shoes he will decide to accept pharmacological help.

Healing
I believe healing happens faster when body is not fighting to help with pain relief. when it's fighting pain the body will spend more energy than if it is spending most of it's time in the healing mode. body's also heal faster when the body is resting well and certainly meds help with resting.

it's all about choice, please help support him with the choice he makes, this is his war to win and you can help him with the daily battles.

med's help why not use them.

john


btw i hate pain med's also but use them when i need them to help with healing