Those on pain meds...

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skypup
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Those on pain meds...

Postby skypup » Wed Apr 30, 2014 5:06 am

I am fairly new to pain meds and would like to know more from patients.

I can only tolerate oxycodone; tramadol, gabapentin, morphine, dilaudid, hydrocodone all make me sick. I take 10mg at night to sleep and maybe again during the night. During the day, when I am moving, I usually don't have much of a problem. My docs would prefer, I think, for me to be on it round the clock, but I am resisting since I just don't need it all the time and I don't like being woozy.

My trouble is that when I wake from pain during the night, it takes almost an hour for the meds to take effect, too much misery. So I obviously can set an alarm and take more, just in case, whether I am in pain or not. I am also thinking about upping my dose a bit to get more relief. The docs are okay with me using a lot more pain medication, but I'm afraid of the stuff.

So my question is: what and how much do you use and is it effective?

Thank you. This is an example of one reason I love this forum. We can't be each other's docs, but we can share our experience and knowledge.

KimT
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Re: Those on pain meds...

Postby KimT » Wed Apr 30, 2014 6:40 am

I'm a nurse. What most people don't understand is that when it comes to narcotics, the sky is the limit. As long as you are not having respiratory problems, it is safe to increase the dose to wherever you need to find relief. Narcotics are very subjective for each person. I prefer Vicodin just because it will relieve my pain without making me really woozy. 10 mg of osycodone would put me right to sleep for half a day if not longer. I take 300mg of gabapenten at night and Vicodin as needed. I only do osycodone after surgeries.

I would advise trying the pain medication around the clock as your doctor has suggested. I think you will find that you will adjust and not be as sleepy while taking it during the day. It can be difficult to get pain under control as you have noticed when the medication wear off and sometimes it is best to take the pain medicine around the clock to keep the pain at bay. Oxycoconr comes in a controlled release long acting form which is probably what your doctor is suggesting. The long acting form doesn't usually cause sleepiness like the regular form does. I would give it a try and take additional short acting at night if needed. I think it will be a better regimen for you. IMO dealing with cancer earns anyone the right to not have to tough it out when it comes to pain.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
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dianne052506
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Re: Those on pain meds...

Postby dianne052506 » Wed Apr 30, 2014 7:05 am

Skypup,
I've been taking 10 mg of oxycontin twice a day for the last month or so. The radiation oncologist wrote the Rx when I was having treatments. For the last week, I've also needed hydrocodone (10/325) at least once a day for break-through pain. I was waking up in the middle of the night in tears it hurt so much.
Since I've recently had a CT scan that didn't show anything new, my onc said yesterday that he believes the pain now is a side effect from the radiation. He told me to take 20 mg of oxycontin at night and see if 10 mg was enough for the daytime dose. He said 10 mg was a relatively small dose.
I have learned that I do need to take the oxycontin exactly every 12 hours. If I forget, by hour 13 or 14, I am almost screaming.
Good luck. Hope you find something that will let you rest.
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

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Maia
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Re: Those on pain meds...

Postby Maia » Wed Apr 30, 2014 7:23 am

So sorry you're in pain,my Skypuppy :(
KimT wrote:I would advise trying the pain medication around the clock as your doctor has suggested. I think you will find that you will adjust and not be as sleepy while taking it during the day. It can be difficult to get pain under control as you have noticed when the medication wear off and sometimes it is best to take the pain medicine around the clock to keep the pain at bay.

For what I've seen in my life, I agree with that. You can even try a lower dose, but better if you take it around the clock. At least, you may want to give it a try.

dianne052506 wrote:Since I've recently had a CT scan that didn't show anything new, my onc said yesterday that he believes the pain now is a side effect from the radiation.

Sorry about the pain, also, Dianne but... those are goddamn good news,about the CT scan! Did you share that in other thread and I missed it, uh? :)

NWgirl
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Re: Those on pain meds...

Postby NWgirl » Wed Apr 30, 2014 9:27 am

Thanks for posting everyone. I've just started taking some low dose pain meds as needed so I appreciate hearing from those a little farther along as to what they face and how they deal with it.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
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skypup
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Re: Those on pain meds...

Postby skypup » Wed Apr 30, 2014 10:05 am

Kim and Dianne, thank you so much for the info, it is so helpful! Especially that the danger is respiratory, Kim; that puts my mind at ease because I figure I can tell about that.
Maia-- I love you to pieces! xoxoxo!
Belle, seems we are in the same boat, narcotic newbies. Thank goodness we have our group.

pfCml73183
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Re: Those on pain meds...

Postby pfCml73183 » Wed Apr 30, 2014 10:22 am

Skypup, my husband and I were just talking and he thinks methadone has been good for him.
Right now he is cutting down since surgery. They had him on a high dose. It does constipate him usually but it is now balancing out the diarrhea he would normally be getting from his chemo tx.
He also feels it when he is due/overdue for his dose.
He fought hard to not take anything too. He never took anything before cancer.
I am amazed that you have held off this long.
Having a pain team is a huge help for him and have definitely given him confidence. He can reach them any time.
Sincerely, P+C
Wife and BF to Peter, 54
mCRC/IV/BRAF+
Erbitux and Urelumab trial @MSKCC 3/15
went home 5/8/15

skypup
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Re: Those on pain meds...

Postby skypup » Wed Apr 30, 2014 11:00 am

Celeste, I've read that methadone is a great drug because it works along two pain pathways simultaneously, but that it requires close monitoring at the start because the long half-life makes accidental overdose more of a danger. I have filed it mentally under: for when pain is more severe. Does that match where your husband is?

I do have a pain management doc on my team at MDA. Asking for a referral was one of the smartest things I've done as a cancer patient and I recommend it highly for anyone who has access to such a specialist. The fact that his only job is to help with my pain makes for a more focused and expert consult, in my experience. He has also discussed nerve blocks, but we are waiting on that one for now. (Added bonus: since it is such a relatively new field, all the docs seem to be young and fun. I don't mind seeing a young, cute doc now and then... 8) )

pfCml73183
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Re: Those on pain meds...

Postby pfCml73183 » Wed Apr 30, 2014 11:13 am

Yes, young'ns can be an added pleasure.
I also like that the pain specialist can help with the side effects as well.
My husband is in bad pain. At first it was thpught to be the original tumor. He never got that surgically removed but it disappeared after radiation and chemo.
Now the pain is being blamed on the radiation. He is usually at a 3 or 4 pain level when they are working. I can see it in his face when it is not working well.
Peace, Celeste
Wife and BF to Peter, 54
mCRC/IV/BRAF+
Erbitux and Urelumab trial @MSKCC 3/15
went home 5/8/15

dianne052506
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Re: Those on pain meds...

Postby dianne052506 » Wed Apr 30, 2014 4:25 pm

Talk about being dumb. This morning I wrote that I absolutely have to take the oxycontin every 12 hours; then I went and missed a dose. I was visiting a friend (only 2nd time I've been able to do that all year) and trying to figure out why I was hurting so badly. It was 2:30 p.m. when I figured out I had skipped my 11 a.m. dose. I want to take the new 20 mg Rx at bedtime tonight, so I'm trying to make do with just hydrocodone for now. It's not working so well.
If the big C doesn't do me in, my own stupidity may very well.
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

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Voxx66
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Re: Those on pain meds...

Postby Voxx66 » Wed Apr 30, 2014 4:30 pm

Speaking of pain meds - have any of you tried Zohydro? (assuming it is even available with all the negative publicity) It won't be for me as I hate Oxy but some of the rest of us here that are in pain might benefit.
DX and resect 10/2012 age 46
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liver mets both lobes 8/2013
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lohidoc
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Re: Those on pain meds...

Postby lohidoc » Wed Apr 30, 2014 5:02 pm

Skypup, it is easier to prevent pain, or treat it when it is mild, then to wait for it to be severe, because then it does not work so well and you need to take an awful lot.

Consider a certain threshold serum level of your pain killer. As long as it is above that level the medication is effective. Once you fall below the level, the pain returns and gets worse the lower it gets. Based on this it is much better to take the Rx regularly and maintain that blood level.

Btw have you tried fentanyl patches? They should not make you sick, and usually very well tolerated.
"Half of what I know is wrong. I don't know which half."

Age 56
Dx 19/7/11
R. hemicolectomy 25/7/11
IIIc, 7 / 23 nodes,
no mets
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elise
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Re: Those on pain meds...

Postby elise » Wed Apr 30, 2014 5:42 pm

I'm like you, oxi is the only med I can tolerate when I have pain. I use it when I have pain over a 5/10.

I'm in a different boat than you are (nerve pain allover and arthritis pain vs mets pain) but...
Daily, I take celebrex (usually 200mg, but up to 400mg/day) and Lyrica (50-100mg) at night. The small dose of lyrica makes a huge difference to my comfort level. My doc and I were amazed at the difference.

In your shoes SkyP, I'd try taking a little more before bed to see if it gets you through the night. Otherwise, try taking a small dose all day long. I'd try to avoid waking up in the night to get the most amount of REM sleep. BTW, I get killer headaches from oxi, especially when I'm coming down from a dose.

Elise
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED

Lee
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Re: Those on pain meds...

Postby Lee » Wed Apr 30, 2014 5:54 pm

I had surgery recently, per the surgeon, keeping a certain level of medicine is better than only treating the pain when need be. I'm 3 weeks out and only now pretty much off all meds. Only taking an occasional Motrin when needed.

Good luck, pain is the worst. Hard to function when dealing with pain.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

skypup
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Re: Those on pain meds...

Postby skypup » Wed Apr 30, 2014 6:22 pm

Thanks, everyone. And especially lohidoc, so good to see you. I am going to do as many suggest and keep a certain level going all the time. But I will start small! Thanks for all the help!

No, I haven't tried fentanyl patches. They haven't been suggested. I have the impression they are for more severe constant pain?


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