Please help, input needed

[claudine]

oxycodone <-> Gabapentin : (Major interaction ! )
https://www.drugs.com/interactions-chec ... 7-0,1770-0

That's very interesting, JJH. My husband is on heavy doses of Gabapentin (has been for teh past two years) and is also taking Oxycodone right now, because of his lumbar stenosis. So far so good - these were prescribed by a pain management specialist, so you'd hope they know what they're doing?!

[Ulendon]

Still in the hospital. Still in tons of pain. They took the NG tube out yesterday. I've had a little clear liquids today. Really not doing well though.

It feels like the pain is never going to go away.

[JJH]

I'm sorry to hear that you are back in the hospital now so soon after initial discharge.

Have you seen your surgeon since you were re-admitted? What does she think?

Have you told her about your sequence of daily pain levels since surgery? (see "Comparative Pain Scale Chart" below)

Has she examined you to determine the likely locus and cause of the pain? (see "Identifying Your Pain" below)

What does your surgeon think? I think that once she determines the source of your pain she should be able to outline a better pain management program for you.

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FYI, your hospital ranks only average in terms of 30-day re-admission to hospital after surgery. I think they should consider keeping patients in the hospital longer just after surgery so as to observe them thoroughly and make sure that they are in a stable-enough position to go home without risking an early re-admission to the hospital. (That's just my personal opinion.)

https://health.usnews.com/best-hospitals/area/ca/kaiser-permanente-oakland-medical-center-6930067/colon-cancer-surgery

[polluxx]

I’m so sorry to read that you are still in so much pain. When I was in the hospital, the morphine seemed to do nothing for me. My doctor changed it to IV Dilaudid with zofran. I could almost instantly feel all of my pain slip away. I understand why it carries such a risk of addiction because it worked so well.

It is frustrating to have more pain than “expected”.

My last FolFox cycle I had a night of uncontrolled vomiting despite all of my anti nausea drugs. When I told my doctor, she kept saying, you shouldn’t be throwing up on FolFox. Nobody gets that sick on FolFox.

I had more pain than expected with my port too. I read about how getting the port placed is no big deal. I had pretty substantial pain from it for 6 weeks. I was telling the nurse that I don’t always complain. Most of my life I’ve had a high pain threshold. So why am I having all kinds of reactions no one else has? She said my port was still bruised and swollen, so she wasn’t surprised it was still causing me pain.

These things can just affect our individual bodies in such different ways. I’m even having an unusual side effect from my new blood thinner. It is making me gain a pound a day. Weight gain isn’t listed as a side effect, but plenty of people report issues with it. I’m going to switch and if I quit gaining weight, I’m going to push my doctor to report my side effect to the drug manufacturer in order to help get it listed as a potential side effect.

My point is that doctors see so many patients that fit into their norm of their expectations, that they sometimes forget that we might fall on the edges of the bell-shaped curve. Our reactions, and situations and pain is every bit as much of a priority as that of patients who are typical.

It is so hard to think clearly or make decisions when you are in pain. I’m hoping you find someone who thinks outside of the box, and finds the right combination of medication to get you some swift relief.

Keep us posted.

[boxhill]

I wish we could suggest something that would really help you. I admit I have a hard time understanding exactly what is going on. I gather that you ended up back in the hospital and with an NG tube for some reason? I understand that you are not in the best of shape to be able to communicate clearly about what is happening. And to make things worse, I assume you are not allowed to have a companion who might be able to help with that, given the covid-19 rules.

Have they by any chance given you one of those setups where you have a button that enables you to inject a dose of painkiller into your IV when you need it? They are calibrated so that it is impossible to OD, and in fact people usually get better pain management while using less.

I hope things improve for you quickly.

[Ulendon]

I made it home yesterday. My stoma woke up and seems to be functional. Pain is still an issue, had a hard time getting to sleep last night but once I did I slept well.

Being able to sit and lay in different positions has made all the difference in the world for the back pain I was experiencing, Wich was the worst of the pain.

I didn't like oxycodone in hospital so came home with just Tylenol and ibuprofen.

I still feel really heavy and underwater but have high hopes.

[polluxx]

I’m so glad to read that you are home and able to sleep.

[JJH]

It's really nice to hear that you're back home again after that unexpected stay in the hospital. I'l bet your dog was happy to see you return!

Does your oncologist have any idea when you will start your adjuvant chemo regimen?

[Ulendon]

Thanks guys, chemo starts on the 18th.

I'm still having pain issues. The pain isn't particularly bad it's just incessant I don't mind too much during the day but I've been having a hard time getting to sleep.

I'm also having issues with the ileostomy appliance. Middle of the night leaks and allergic reactions to the adhesives. My skin around the stoma is pretty messed up and some parts are bleeding.

I did get out of the house for the first time (aside from doctors visits). Took one of the dogs to swim with a friends dog.

[JJH]

Thanks guys, chemo starts on the 18th.

I'm still having pain issues. The pain isn't particularly bad it's just incessant I don't mind too much during the day but I've been having a hard time getting to sleep.

I'm also having issues with the ileostomy appliance. Middle of the night leaks and allergic reactions to the adhesives. My skin around the stoma is pretty messed up and some parts are bleeding.

I did get out of the house for the first time (aside from doctors visits). Took one of the dogs to swim with a friends dog.

I'm sorry to hear that you are having trouble with the stoma wafers. Here are some resources you could consult to see if you could find a solution.

• Peristomal skin irritation
  http://www.med.umich.edu/1libr/Surgery/GenSurgery/ColorectalSurgery/PeristomalSkinIrritation.pdf
  It's important to care for peristomal skin problems before they get out of control:
  Some serious peristomal skin infections
  .
• MissMolly's Insightful Posts
  https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=58013&p=456986&p=456986#p456986
  MissMolly has some very good suggestions for skin repair products to use when the stoma wafers cause irritation and excoriation. You can search her past posts with keyword EXCORIATION to find some of the recommended products. (Note: the username MissMolly is one word, with no embedded spaces.)
  .
• Ostomy forum
  https://www.uoaa.org/forum/index.php
  If you haven't done so already, you might consider registering on the Ostomy Forum, where they apparently have a lot of ostomate members who have good advice to give on a range of topics.

[Ulendon]

Thanks JJH,

I've been seeing the wound care nurse and using allllllll the products. Still haven't dialed things in but working on it and I'll try the ostomate forum.

[JJH]

I'm starting chemo next week. The procedure will be a bit different because of covid. I'll be taking pills and coming in only once every 3 weeks for Oxaliplatin infusion.

So, it looks like your adjuvant chemo will be the CAPEOX/XELOX regimen. This time around the Xeloda will probably be at a higher daily dose than what you had during chemo/radiation. The dose you had during chemo/radiation was a reduced dose to serve only as a radiation sensitizer.

So you should be prepared for a possibly higher level of side effects because both the Xeloda and the Oxaliplatin will be at full strength.

There are two things you can do now in preparation before chemo chemo starts in order to avoid certain problems later on.
1. Do a good pedicure and manicure to clean out any dirt/bacteria/fungus under the nails. This is to help avoid nail infections if it turns out that you have a bad case of hand-foot syndrome.
2. Do a good job of cleaning your teeth before the start of chemo to remove any food particles near the gum-line. Then get a good non-alcohol based mouth rinse to use after each meal to clean out any new embedded food particles. Always clean your mouth before going to sleep. This is to help reduce or inhibit mouth sores.

Since you will be seeing the doctor only once every three weeks, you need to keep a good daily log of symptoms so that you can quickly notify the doctor if there are any big changes in side effect severity. You may need to contact the doctor in the middle of the cycle if things start to get out of control quickly. Be sure you have a good contact number for assistance on week-ends and holidays.

One more point: Be sure to stay well hydrated. This is to help restore the electrolyte balance and to prevent kidney damage. Even better, if you could drink a sports drink like Gatorade every now and then this would help even more in restoring electrolyte balance.

Here are some tips for the CAPEOX/ XELOX regimen:
Side effects of XELOX (CAPEOX) regimen
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59287&p=469490#p469490

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=61932&p=490294#p490294

Good luck! Let us know how the first infusion went.

[Ulendon]

First infusion went fine. They had an acupuncturist there too. I was surprised that I started having side effects before the infusion even ended. I really tolerated chemo during radiation well so I had my hopes up that this would be the same. I went to the bathroom towards the end of the infusion and when I went to wash my hands, yikes!

So if my hands get at all cold, like under 70 degrees I get the tingling. Anything colder burns. Feet are the same. The problems that I'm having with this are. Getting things out of the fridge (haven't even looked at the freezer) and cooking. Work, I'll be working full time during this. Mostly from home currently. I need to be able to keep my hands warm and type.

Sleep, I got so little sleep last night due to a combination of things but the one associated with this side effect is temperature regulation. I was already having a really tough time with this after the radiation caused early onset menopause. And again, after the surgery my abdomen still gets all hot and inflamed. I wore socks to bed because I usually stick a foot out to keep me cool but can't now. It's good I sleep alone mostly because the elaborate setup of pillows, and like 4 different weights of blankets.

I'm also getting the first bite thing which is no fun. I also have little bump in my throat when I swallow room temperature or colder water.

[Carboxo]

Hang in there. Ask questions here ask questions at the doctors office. When you think about a question write it down and then ask it. Now is the time for you to fight. You got this and we got you.

[Carboxo]

My sister had a hard time with chemo and with chemoradiation. She completed 4 months of chemo and did 26 rounds of chemoradiation. She had the first bite and she developed neuropathy. The numbing and tingling in hands and feet. Here is what we did.
We had gloves everywhere plus we had tons of those hand warmers. She said that really helped. She had an easier time eating spicy food but black pepper became her enemy. She had oral thrush too but the doctor gave her mouthwash for that but first we used baking soda and peroxide. Hard cherry candy worked too. Plus licorice.
She also liked to wear v- neck tshirts. She ended up getting a chest port which helped a lot.
Hang in there