Please help, input needed

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Claudine
Posts: 336
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Please help, input needed

Postby Claudine » Tue Apr 21, 2020 9:57 am

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?!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 7.6
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 small uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

Ulendon
Posts: 50
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: Please help, input needed

Postby Ulendon » Sat Apr 25, 2020 8:03 pm

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.
43 F
DX: RC
Tumor Location: Mid
Type: Adenocarcinoma
Tumor size: 5cm
Tumor Grade: T3b
Clinical: Stage IIIC (cT3, cN2b, cM0)
Suspicious local regional lymph nodes and 1 Extramesorectal lymph node
CEA 3.2 12/4/19
Margins: clear
MSI: intact

11/25/19 colonoscopy
12/2/19 MRI
12/3/19 CT: no evidence of distant spread
12/6/19 Surgery consult: LAR
12/11/19 Oncology: RX: Xeloda, Radiation x28
12/13/19 Radiation Oncology consultation, scan, tattoos

12/26/19-2/5/19 Xeloda, Radiation x28

JJH
Posts: 290
Joined: Mon Apr 24, 2017 7:26 am

Re: Please help, input needed

Postby JJH » Sun Apr 26, 2020 10:19 am

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
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

polluxx
Posts: 36
Joined: Thu Jul 10, 2008 9:41 pm

Re: Please help, input needed

Postby polluxx » Sun Apr 26, 2020 10:38 am

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.
Stage 3c
2/2020 Right colon hemicolectomy (invasive adenocarcinoma with micropillary features)
Moderately differentiated
Tumor size: 4.4 in greatest dimension Metastatic Carcinoma in 12 out of 28 lymph nodes
Extranodal extension identified
Margins negative

3/2020 Began 12 rounds of FolFox

boxhill
Posts: 516
Joined: Fri Apr 06, 2018 11:40 am

Re: Please help, input needed

Postby boxhill » Sun Apr 26, 2020 5:55 pm

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. :cry:
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
Neulasta 6/28
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: many fails before Celebrex helps
12/23/19 CT stable

Ulendon
Posts: 50
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: Please help, input needed

Postby Ulendon » Wed Apr 29, 2020 5:37 pm

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.
43 F
DX: RC
Tumor Location: Mid
Type: Adenocarcinoma
Tumor size: 5cm
Tumor Grade: T3b
Clinical: Stage IIIC (cT3, cN2b, cM0)
Suspicious local regional lymph nodes and 1 Extramesorectal lymph node
CEA 3.2 12/4/19
Margins: clear
MSI: intact

11/25/19 colonoscopy
12/2/19 MRI
12/3/19 CT: no evidence of distant spread
12/6/19 Surgery consult: LAR
12/11/19 Oncology: RX: Xeloda, Radiation x28
12/13/19 Radiation Oncology consultation, scan, tattoos

12/26/19-2/5/19 Xeloda, Radiation x28

polluxx
Posts: 36
Joined: Thu Jul 10, 2008 9:41 pm

Re: Please help, input needed

Postby polluxx » Wed Apr 29, 2020 9:05 pm

I’m so glad to read that you are home and able to sleep.
Stage 3c
2/2020 Right colon hemicolectomy (invasive adenocarcinoma with micropillary features)
Moderately differentiated
Tumor size: 4.4 in greatest dimension Metastatic Carcinoma in 12 out of 28 lymph nodes
Extranodal extension identified
Margins negative

3/2020 Began 12 rounds of FolFox

JJH
Posts: 290
Joined: Mon Apr 24, 2017 7:26 am

Re: Please help, input needed

Postby JJH » Wed May 06, 2020 12:36 pm

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?
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

Ulendon
Posts: 50
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: Please help, input needed

Postby Ulendon » Thu May 07, 2020 5:22 pm

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.
43 F
DX: RC
Tumor Location: Mid
Type: Adenocarcinoma
Tumor size: 5cm
Tumor Grade: T3b
Clinical: Stage IIIC (cT3, cN2b, cM0)
Suspicious local regional lymph nodes and 1 Extramesorectal lymph node
CEA 3.2 12/4/19
Margins: clear
MSI: intact

11/25/19 colonoscopy
12/2/19 MRI
12/3/19 CT: no evidence of distant spread
12/6/19 Surgery consult: LAR
12/11/19 Oncology: RX: Xeloda, Radiation x28
12/13/19 Radiation Oncology consultation, scan, tattoos

12/26/19-2/5/19 Xeloda, Radiation x28

JJH
Posts: 290
Joined: Mon Apr 24, 2017 7:26 am

Re: Please help, input needed

Postby JJH » Fri May 08, 2020 8:04 am

Ulendon wrote: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.

"The darkest hour is just before the dawn" - Thomas Fuller (1650)

Ulendon
Posts: 50
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: Please help, input needed

Postby Ulendon » Mon May 11, 2020 3:44 pm

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.
43 F
DX: RC
Tumor Location: Mid
Type: Adenocarcinoma
Tumor size: 5cm
Tumor Grade: T3b
Clinical: Stage IIIC (cT3, cN2b, cM0)
Suspicious local regional lymph nodes and 1 Extramesorectal lymph node
CEA 3.2 12/4/19
Margins: clear
MSI: intact

11/25/19 colonoscopy
12/2/19 MRI
12/3/19 CT: no evidence of distant spread
12/6/19 Surgery consult: LAR
12/11/19 Oncology: RX: Xeloda, Radiation x28
12/13/19 Radiation Oncology consultation, scan, tattoos

12/26/19-2/5/19 Xeloda, Radiation x28

JJH
Posts: 290
Joined: Mon Apr 24, 2017 7:26 am

Re: Please help, input needed

Postby JJH » Thu May 14, 2020 11:16 am

Ulendon wrote: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.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

Ulendon
Posts: 50
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: Please help, input needed

Postby Ulendon » Sat May 23, 2020 11:35 am

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.
43 F
DX: RC
Tumor Location: Mid
Type: Adenocarcinoma
Tumor size: 5cm
Tumor Grade: T3b
Clinical: Stage IIIC (cT3, cN2b, cM0)
Suspicious local regional lymph nodes and 1 Extramesorectal lymph node
CEA 3.2 12/4/19
Margins: clear
MSI: intact

11/25/19 colonoscopy
12/2/19 MRI
12/3/19 CT: no evidence of distant spread
12/6/19 Surgery consult: LAR
12/11/19 Oncology: RX: Xeloda, Radiation x28
12/13/19 Radiation Oncology consultation, scan, tattoos

12/26/19-2/5/19 Xeloda, Radiation x28


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