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teriw

Need advice on pain management (new question July08)

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Hi everyone,

Up until the past few days, Bill's pain has been at least somewhat intermittent. When he's having it, it's bad -- but there were periods of relief or at least lessening of pain where it was more of a discomfort.

He's had Vicodin (almost does nothing now) and recently Dilaudid. He was given dilaudid in the hospital (intravenously) and it worked well, so we asked the doctor for the pill form. It worked great the first 4 or 5 times. Now it just lasts a very short time. He was only using it at night, so it's not like he's been taking it all day to build a tolerance.

He's been in agony nearly 24 hours. We see the doc today. Obviously, I'm going to explain the situation and pain the best I can. But I'm wondering if anyone has any advice about pain management. I know I've said this before, but Bill has a very high tolerance for pain, so when he's doubled over in agony, I know it's bad.

He mentioned having someone come in. I believe I'm right that a "hospice" only comes in when you've stopped treatment? Has anyone else had nurses come in strictly for pain management while still undergoing treatment? Who would I talk to besides or in addition to our doctors? Bill's not on treatment right now, but is wanting to start more chemo when his body is strong enough. He said if it's a choice between pain and having to the hospital, he'll suffer the pain. I don't believe that should be a choice he has to make.

Sorry if this is too long...thanks for any info.

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you should look into palliative care....

we on on hospice now but before that he was on palliative care... a nurse would visit for meds and to check on him 1-2 times a week but he could go for treatments at the same time....unfortunately he never felt well enough to start any treatment so that is why we changed to hospice....

pain meds are something that you actually have to keep in your system to work the best... they always say it is harder to play "catch up"... you may want to see about having some low dose of a longer acting pain med and then have meds avail for "breakthrough"

my husband is on MS Contin for long acting (12 hour) and Roxinol drops for breakthrough.....both of these are morphine... he was on Fentanyl patches for a shile..they get changed every 3 days..but hospice said it is harder to moniter exactly how much they are getting b/c it isnt always consistent and if the patch isnt put in a more "meaty" place it doesnt work well and sometimes they dont stick right....

I hope this was helpful...I am sorry he is going through that pain...I know it is hard to see them go through that and feel so helpless... a few times mine had intense pain and I would give him meds knowing it would still be 30-45 min before they would start kicking in...

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There are some organizations (some that even go under the name of hospice or home health) that will come help even when a person is still undergoing fairly agressive treatment. In area there was something called "The Bridge" for when you were still in the fight, but were at a point when you needed more help with pain management and/or physical support.

Looking up something else with the search feature, and I'll post or edit when and if I find it. ;)

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Ok, I did the search just because I thought I was making things up, but our patkid's Brain (she doesn't post much anymore) actually found great relief with Advil gelcaps. He was in a GREAT deal of pain and they'd been working with the 'heavies' and Advil gelcaps were the only thing that worked. A couple other people replied that they had found them helpful as well. Could be worth a shot...

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Teri,

I am so very sorry that you and Bill are going through this. I do agree with the point that that you must stay ahead of the pain with any medication - it will not be as effective if you wait until there is signficant pain. I know that the temptation not to take the drugs until necessary is strong, but it generally doesn't work well that way.

It is not true in all cases that home health care will only come in if treatment has been stopped, though lots of hospice organizations do operate in that manner. There are many non-hospice home health care programs. I would start by asking the Dr's nurse for a referral, and would also check with your local VNA, your insurer (you may be required yo use a specific agency), and the local cancer society.

I wish I could be of more help. Stay strong - I know your burden is heavy right now.

MC

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I know more about Canada - as far as programs - but I think snoop is right about the palliative program.

This is what Ger had/did

Oxycodone

then moved to

Fentinal patches (didn't work) with oxy break throughs

Hydromorphone 36mg every 12 hours and another type of morphine pill for breakthrough as required

Ger's pain was in his shoulder and upper back by shoulder - the cancer mass was literally pulling and pushing on all of those nerves and muscles.

Radiation helped somewhat -his pain was greatly reduced....but the cancer still grew quickly everywhere else.

The key really was to get regulated and stay on the pills - taking at night really doesn't work - it is probably wearing off - so Bill needs a higher dosage and as snoop said regulated with breakthrough pain pills.

I know if you have in home nursing care you can get the iv hook up and you can administer the hydromorphone through the iv. i did that. It will hit faster. You can also get pain pumps - Ger had in the hospital and I have seen people with them.

As my doctors said - it is very important that they are comfortable right now and not in pain.

Hope this helps. Heather

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Teri,

If you're in a hospital, and it sounds like you are, they should have a "pain service" which is a group of doctor's and nurses who exclusively deal with patient's pain. There are a lot of options once you talk to them - things that enhance the pain meds, non-opiod meds, even surgery sometimes.

If your hospital doesn't have one (which is doubtful these days), look online for a pain management doc or call your ins. company.

This is where I go.

http://www.mskcc.org/mskcc/html/474.cfm

If he's in pain, keep hassling them: "that didn't work, this didn't work." Bill shouldn't have to put up with that.

Good luck,

aaron

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Hi Teri,

I'm sorry to hear that Bill is in pain... I don't know how these guys take it! I'm such a coward when it comes to "hurting".

I don't have any brilliant ideas for you, but wanted to let you know that Harry is on Morphine, 30 MG, every 6 hours.

His major complaint is joint pain... (not even anywhere near where the tumor is.....)

They gave him Hydrocodone at first, and he didn't like the way he felt when he took it, so he's been on Morphine ever since.

Hope he feels better soon,

Love,

Nova

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Once again, the advice here is invaluable. You've all given me a lot of things to look into, and to just know that there are more options that we might have thought. I guess it's a matter of finding the right combo for each person.

Thank you, thank you, thank you.

Bill felt a tad better earlier -- I could tell, because his sense of humor returned in full force. He was walking around saying, "I'm not in pain and I'm not tired, I'm not in pain and I'm not tired..." Followed by, "that mind over matter [bleep] is a load of [bleep]."

Like a lot of you, he doesn't want to be "out of it." But he wants to be comfortable. Hoping there's a happy medium.

Hugs to all,

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Teri

Is the pain Bill is having related to the radiation to the chest? My Mom was in severe pain for about 3 weeks after treatment. She was also on morphine, the fetandyl? Patch and ended up ripping the patch off and stopped taking the morphine-then got the shakes and wondered why..ha ha - I told her she was having withdrawl.

Now she is feeling much better as far as the esophagus pain goes but she is still exhausted.

Keep me posted

Dar

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Hoping you guys find a happy medium too (and soon) Keep us posted on how it went at the Dr.

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Teri,

So terribly sorry to hear Bill is suffering with pain. I don't have any advice as my Bill only had pain last year when his esophagus got burned so bad from the radiation. All I can do is continue to pray for Bill and you for comfort and strength.

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Hi Terri. I am sorry Bill is having pain also. I hope your visit to the Doctor was informational and his pain is under control now. He should not have to be in pain..this mess is hard enough to fight when one is not in pain!!

Give him our love and you take care of yourself too.

Love,

Bobby

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Hi Terri: I'm sorry to hear Bill is having such awful pain. Maurice was also suffering tremendous pain that was treatment related, not cancer related, and he now takes 20mg long acting oxycontin every 8 hours plus 10mg fast acting oxycontin for breakthrough pain every 3 hours as needed. It has made all the difference in his quality of life although it took about 3 months to come up with the right combo. Hope Bill can find a combo that works for him. Good Luck & God Bless

wendyr

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Hi everyone,

Well our doc appointment actually went well, all things considered.

Bill is now on MS Contin-CR every 12 hours for long acting pain control, and is using Dilaudid for breakthrough pain control. It's working! Trouble is, he's struggling to stay awake. He literally falls asleep in the chair when we're talking sometimes (maybe it's my conversation :wink: ). But from what I've read, that's normal when you first start on these type of meds. Hoping the fatigue subsides somewhat. But if he has to choose between fatique and pain, he'll choose fatigue.

The first night he took it and the pain went away, he said he had to get out of bed so he didn't miss not having pain. He didn't want to sleep through it! He was so happy the following morning. It was also the first night in a long time that he virtually slept through the night (which meant I did too!).

He is also scheduled to start more radiation on a spot on his back that is one great source of pain. Perhaps after that he won't need as many meds, but we'll just have to see.

Now if we can get some weight on him, things would look up. At the moment he looks like he's been on a hunger strike.

Love to everyone,

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Thank you so much for the update. :lol: Hopefully the radiation to the spine will help the pain. It's wonderful that he is able to maintain a sense of humor through all of this. He is a very special person and so are you.

Blessings to you and prayers for you both.

Get some good night's rest. You both deserve it.

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That's great news Teri! I'm glad that Bill has gotten some relief.

I know what you mean about a hunger strike...Mom keeps losing weight and she is eating. It's so hard to watch. And the funny thing is that her hair is growing back. I say we need meat on that body--not hair! We've got some hair in the dining room. Her body needs to stop wasting protein and energy on growing hair!

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Bill has been on the MS Contin-CR (30 mg) since Thursday night. He's having EXTREME fatigue. Literally I have to keep waking him up if he's trying to eat or drink something. That along with his general weakness from not eating is making him quite unstable as he's walking around.

My question is: How tired is TOO tired, and how long does the initial adjustment period typically last?

We see our medical onc on Tuesday, so I figure that's enough time to know if this med is too strong. Any similar experiences?

Is there ever an easy answer?! :?

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I dont have answers but just wanted to say that I am thinking of you both and that I miss Bill's humorous posts -- hope he gets well real soon so that we can enjoy his company again.

Best wishes

Dawn x

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Cut back dosage or amount taken at certain times?? Smaller dosage frequently and larger every 12 or so maybe?? Just a thought. Sayin a Prayer for Teri and Bill

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