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In ER and pain

Kathleen808's picture
Kathleen808
Posts: 2299
Joined: Jan 2009

Hi Friends,

Well since the scan on September 13th, things have been getting harder.  Dick started on Regorafenib on Tuesday and he only took it for 4 days and now we are in the ER.  I am asking you how to deal with the pain.  I know that is a very open question but fortunately for Dick his pain centered around his 2 surgeries and then diarrhea and anal pain (not to down play that pain at all).  This new pain is hitting around 2 in the morning and they have already upped his meds. He is on Percecet but I get a low dose.  He does have growth in the lymph nodes and the node on his adrenal glad but he has not been on treatment in a month.

The question is when do people get the patch?  Do people manage to get pain under control and have some good days?  Dick's pain is very bad at night and then for the past few days he is OK during the day and then pain meds around 9pm and then it gets worse and worse as the night goes on and gets to a level 9.  We are walking for a few minutes and then he tries to lie down and then he might sleep for an hour.  So we are at the ER and we need help with pain.  We are interested in quality of life once pain meds start.  We have not given up on treatment but we do need to get the pain under control.

Thank you .

 

Aloha,

Kathleen

Chelsea71
Posts: 1170
Joined: Sep 2012

Kathleen,

I can't advise you with regards to Dicks pain.  Fortunately, Steve didn't have to deal with a lot of pain. I do, however, understand your pain.  My thoughts are with you.  Stay strong.

 

Chelsea

Luv2lunch
Posts: 254
Joined: Aug 2010

Hey Kathleen,

I also am no help with your pain problems. Mom hasn't experienced that. Just wanted you to know we were thinking of you guys and praying for some comfort for Dick.

Take care and hope things get better for you all soon. 

Sincerely,

Linda and Mom (Miss Ellie)

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

am so sorry i can not answer your pain question and i know you are looking for answeres just wanted to say i will be sending out prayers for you both and hope things turn around for the better real soon(((HUGS)))...Godbless...johnnybegood

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

I would inquire on the Fentanl patch (25mcg)....what a blessing this drug is:)

Have them follow that up with Dilaudid at 2mg....this will help with the breakthrough pain.....take one every 6 hours or less as needed. 

This combo in some kind of dosage will bring relief to Dick's pain.....took me years before I got a doctor to go with the big guns.....

My pain was going to land me in the hospital too......got to be where yoiu can't live....I was dying with cancer and in horrific mind bending pain.....I got 2 docs to give me one of the drugs each and it has been very effective at controlling the pain.

They are lower doses but can be upped...but don't want to graduate too quickly.

It has helped me with my back problems too....I can really tell when I run low in my body.

Anyway, we have the right to not be in pain.....my personal experience says this will help Dick, who is a friend....and I hate my friends suffering...and suffering needlessly...when they don't have to. 

Anyway, shout that out to your medical team:)

Aloha/Craig

Annabelle41415's picture
Annabelle41415
Posts: 4230
Joined: Feb 2009

I'm sorry that he is going through this pain and can only hope they can find an answer to help him.  It has to be so frustrating that he continuing with the pain.  Wishing him the best and hoping that his pain lessens and he can come home.  You are such a wonderful caregiver and he is so lucky to have you.  Please keep us informed and sorry I'm not able to help with the pain issue but wanted to let you know that you both are being thought of and hoping he feels better soon.

Kim

 

wolfen's picture
wolfen
Posts: 1192
Joined: Apr 2009

So very sorry to hear that Dick is in this much pain & in ER. Hope the docs will heed Craig's suggestion. Ron was given Hydrocdone in pill form & later on in liquid form when he could no longer swallow pills. The liquid seemed to be stronger and he was able to sleep for a little while.

Hoping for speedy relief for him.

Luv,

Wolfen

Kathleen808's picture
Kathleen808
Posts: 2299
Joined: Jan 2009

Thank you dear friends!   You are always here for us.  In the ER they gave him dilaudid and it took the pain away for awhile.  When we got home Dick slept for 3 hours ( I went out and got his meds and a pedicure).  I picked up Oxy  small dose and 12 hour dose.  The hope is that the 12 hour dose will get him (and me) through the night.  If he does not get a good night's sleep we will go for the patch.  We meet with the onc at 11:45 tomorrow to talk next steps and make sure the pain is under control.

My question is, when on the patch, can you drive?  Function?   What can't you do?  Do you wear it all day 24/7?

I'll keep you updated.  Thank you for your support and prayers.

Aloha,

Kathleen

annalexandria's picture
annalexandria
Posts: 2193
Joined: Oct 2011

I'm sorry that he's having so much pain.  When my tumor-related pain really got bad, they had me on oxycodone (not as strong as oxycontin).  It did help quite a bit.  On that, I was able to function more or less normally, but I'm not sure about the patch.  I do know that it is supposed to be more consistent in how it relieves the pain (not so many ups and downs), but when they were considering it for my mom, they said that it can make people a little dizzy and more likely to fall.  But that was older folks, so may not apply to Dick.  

Pls keep us posted.  We're all thinking of you both.

Hugs~AA

ETA that I think I would ask to talk to a pain management doc if this doesn't get under control.  They often have some good ideas.

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

yes, kathleen...it is 24/7....you wear it 72 hours and then change it out.

I don't drive right now with it....though in an emergency feel i could....but it is a narcotic.  your body does make some adjustments to it. 

it's great for pain.....without it, I'm in trouble. 

dick might have to sideline his surfing or take a lighter approach to it....until he got used to it.

The hydrocodone(s) type of drugs are a low dose opoid........oxycontin, dilaudid, etc. are the higher class of drugs and therefore more effective when the pain reaches that point.....low dose stuff won't last.

I'd like to get off of them.......but until they remove my lung tumor, I'm caught in the cycle,,,,and fortunately, that combo works for me for now.

Ladylacy
Posts: 468
Joined: Apr 2012

I'm sorry to hear about all the pain your husband is having.  Mine was tried on morphine liquid but said he didn't like the way it made him feel although it did help the pain.  It was also keeping him awake at night.  We talked about the patch but we were told that due to his weight (he is very underweight and always has been but no one seems to listen to us when we tell them that) he would not be able to wear the patch.  He has lost a lot of muscle and what little fat he had during his fight with cancer.  I'm not to keen on the patch due to what I have read from others about the side effects.  I know they wanted to try my husband on a MS Contin(?) that is a 12 hour morphine release pill but since he can't swallow and it would need to be crushed we couldn't try it due to it being a time released pill.

So he went back on Lortab which does help him just doesn't hold him for more than 3 hours.  They really wanted him off of it due to the acetaminophen and the damage to the kidneys and liver they say can happen if you take it too long and he has been on it for over a year.  But since he is terminal what's the difference and it helps him.

Sharon

 

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

Managing pain is so hard to do or to advise because reaction to pain meds can vary so so much.  I tried the patch about 3weeks ago and it made me sicker than a dog.  I'm very under weight down to only 104 lbs.  the patch made me throw up and have diarrhea.  I ripped off the patch after trying to make it work.  I'm now taking hydro morphine and it seems to help. I pray you find the right pain medthat gives the relief needed.  Jeff

angelsbaby's picture
angelsbaby
Posts: 1157
Joined: May 2008

angel had a pain pump placeded his abdomen and it gave him releaf  i hope dick will find the right pain meds im so sorry

 

michelle

 

Kathleen808's picture
Kathleen808
Posts: 2299
Joined: Jan 2009

Hi Everyone,

I am happy to report that Dick slept through the night.  Boy does that make a big difference!  We will meet with his onc at 11:45 today and see what plan we can come up with .

I'll keep you posted. 

You are all wonderful!  Your support is priceless!

 

Aloha,

Kathleen

smokeyjoe
Posts: 1428
Joined: Feb 2011

Kathleen so sorry to hear Dick is in pain,   can he tell where the pain is coming from??    I'm on regorafinib, about to start my 4th month on this drug.  After work one night we had a business affair to attend  and after a couple of hours I was all of a sudden having lower back pain/hip pain and just general  discomfort  all over ..... next morning I went to fam. doc. and asked for some pain meds. because I wanted to have them on hand in the event something like this would happen again....he gave me a presc. for celebrex and percocet .... said to take the celebrex in morning and take the percocet at night time.     Hope they find the right combo for Dick.    Some people get pain in their feet, I haven't experienced this as of yet.   

traci43's picture
traci43
Posts: 427
Joined: Jul 2007

So glad to hear he got some relief!  Hope the onc can keep that going!  I think being in constant pain is the worst.  Good luck and keep us posted, Traci

annalexandria's picture
annalexandria
Posts: 2193
Joined: Oct 2011

I hope the visit to Dick's doctor went ok.

Hugs to you both~AA

dorookie's picture
dorookie
Posts: 1681
Joined: Jul 2007

Ask for opana er it is stronger than OxyContin and works so much better. That's is what helped me during time of a lot of pain. 

Praying for you guys!

 

Beth

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