Please help, input needed

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

Re: Please help, input needed

Postby JJH » Wed Feb 19, 2020 5:11 pm

Ulendon wrote:...
I've been watching lots of surgery videos and trying to figure out the stoma thing. I'm a bit concerned about what the heck I am supposed to eat. No fruits and veggies!?! I'm not a vegetarian but I don't eat a ton of meat, mostly seafood. I really need to loose weight so have been eating a fruit and veggie rich diet. Not sure what to do while I have the ileostomy.

Food Reference Chart for People with an Ostomy
https://www.ostomy.org/wp-content/uploads/2018/01/FoodRefChart_2018.pdf
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

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

Re: Please help, input needed

Postby JJH » Tue Mar 31, 2020 2:11 am

Ulendon wrote:Radiation/chemo completed and robot assisted LAR surgery date set for April first :lol:
...

Good luck on your LAR surgery tomorrow -- I assume it's still on schedule for April first...or has it been postponed due to the Stay At Home orders???

https://www.kron4.com/news/bay-area/bay-areas-stay-at-home-order-extended-through-may-1/

https://news.yahoo.com/nearly-half-patients-one-kaiser-203310860.html

When you get a chance, let us know how it went, and then let us know what the pathology report had to say about your resected tumor.

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

Ulendon
Posts: 55
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: Please help, input needed

Postby Ulendon » Sun Apr 05, 2020 6:35 pm

JJH wrote:
Ulendon wrote:Radiation/chemo completed and robot assisted LAR surgery date set for April first :lol:
...

Good luck on your LAR surgery tomorrow -- I assume it's still on schedule for April first...or has it been postponed due to the Stay At Home orders???

https://www.kron4.com/news/bay-area/bay-areas-stay-at-home-order-extended-through-may-1/

https://news.yahoo.com/nearly-half-patients-one-kaiser-203310860.html

When you get a chance, let us know how it went, and then let us know what the pathology report had to say about your resected tumor.

Thank you.


It was actually changed to the 15th before the covid stuff started. There was a schedule error.

My follow up MRI and CT looked good after the radiation and there was one lymph node that was borderline before but seems to be fine now.

I've been scrambling to set up my work for my absence and this covid thing has made that infinitely more difficult. I've had to set up our system to do everything, well almost, electronically. At the same time we've been working on implement new software and I'm trying to get all the procedures down to help with my coverage.

The good news about all that is that I'm just starting to get nervous now. The worst part is I won't be able to have my family there. The hotels are all closed and I don't want any of them getting sick. It's pretty terrifying to think that I might die alone ;(

I do have a friend that is coming to dog sit for me and will stay for a few days after I'm home to be sure I'm functional.

Last Thursday I saw the stoma nurse and she marked my stomach where it will go. I also picked up the bowel prep and pre surgery bag.

So yeah, freaking out a bit.
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 » Tue Apr 07, 2020 12:23 am

Ulendon -

Here are some links you could review sometime before your surgery next week.


One thing you might do this week is to check with the hospital to see what kinds of personal items (e.g., phone, laptop, notebook, wrist-watch, etc.) you are allowed to bring into the hospital. Some items are not usually allowed, like expensive jewelry.

If you can manage it and if it is allowed, you could bring in a box of nice chocolates for the nurses to share. Just leave it with the head nurse at the surgery ward nurse's station along with a short "Thank you" note. I can tell you that it will be greatly appreciated by all the nurses there and they will be your best of friends during your stay on the ward.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

Ulendon
Posts: 55
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: Please help, input needed

Postby Ulendon » Sun Apr 19, 2020 12:10 pm

My whole world is pain right now. Surgery was Wednesday hot to my room at 8 pm on excruciating pain. Horrible back spasms. It took aged to get any pain meds and none of it seemed to work. They sent me home yesterday. I have 5 mg of oxy every and 1000 mg of Tylenol every 6 hours and it's just hardly helping. I'm afraid I won't make it.
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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beach sunrise
Posts: 299
Joined: Thu Mar 05, 2020 7:14 pm

Re: Please help, input needed

Postby beach sunrise » Sun Apr 19, 2020 1:18 pm

I am so sorry you are in terrible pain. Please let them know today about the level of pain you are in. When I was released home the instructions were 5mg oxy and advil together, Tylenol 1-2 hrs later. Repeat every 6 hrs. The first 2 days was 5 mg oxy but had to call and get them to up the dose to 10mg.
I pray you get some pain relief!
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

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CRguy
Posts: 10246
Joined: Sun Feb 10, 2008 6:00 pm

Re: Please help, input needed

Postby CRguy » Sun Apr 19, 2020 1:27 pm

YES call to let docs know about the pain
Maybe even a pain specialist ???

Tylenol does nothing for me, hosptials love to use it, BUTT I also used ibuprofen and oxycodone together.
There is also a super potent NSAID called Toradol which I had when even the morphine was not working for me.
The docs don't use it a lot as it can be hard on the kidneys BUTT it works !

" Sometimes pain is inevitable on this Journey...
suffering from it IS NOT ! "


Keep pushing them until you get relief

Harmony on the Journey
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Claudine
Posts: 440
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Please help, input needed

Postby Claudine » Sun Apr 19, 2020 2:49 pm

My husband has lumbar foraminal stenosis right now (a consequence of his damaged vertebrae, he’s seeing a neurosurgeon in Wednesday). He did an online consultation with a pain specialist (from palliative services) and was prescribed oxycodone but also Valium. It’s not a long term solution but at least now he can sleep! You do not have to be in so much pain, there’s is strong stuff out there!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - 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 24.1
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 09/20: nothing to report

boxhill
Posts: 641
Joined: Fri Apr 06, 2018 11:40 am

Re: Please help, input needed

Postby boxhill » Sun Apr 19, 2020 3:08 pm

I agree with everyone else. Push for more pain control. There is no need to suffer that much.

I think Tylenol is completely useless, personally.
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
7/18 and 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: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

Ulendon
Posts: 55
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: Please help, input needed

Postby Ulendon » Sun Apr 19, 2020 6:10 pm

They said I have to go to emergency to get more pain control. The though of getting up and into the car is too much.
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

Ulendon
Posts: 55
Joined: Thu Nov 28, 2019 12:36 pm
Facebook Username: Amira A Sofer

Re: Please help, input needed

Postby Ulendon » Sun Apr 19, 2020 6:37 pm

They are going to give me some gabapentin and flexerall to help with the muscle pain. Why is it hurting so lmuch for so long. I haven't read anyone else having this kind of experience.
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 » Mon Apr 20, 2020 12:46 am

boxhill wrote:...
I think Tylenol is completely useless, personally.

Actually, it might even be worse than that. If a patient takes more than the recommended daily dose of Tylenol (acetaminophen, paracetamol), then this could cause permanent liver damage or even liver failure:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=61855#p490666

The reason that this might happen is that Tylenol does not usually require a prescription, so a patient can buy a large supply and keep taking more and more pills thinking "the more the better" until finally they end up in the ER with major liver damage.

The package insert clearly says what the maximum daily dose is, and this should always be respected.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

annieliz
Posts: 52
Joined: Fri Jul 26, 2019 5:13 pm

Re: Please help, input needed

Postby annieliz » Mon Apr 20, 2020 1:29 pm

I am so sorry to hear that you are in so much pain. It does get better, and walking really helps. The hardest part for me is getting up off the couch, but once I get my legs going everything feels a little better. I hope you have already gotten some relief and are starting to feel better.
66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19-1.9, 12/6/19-2.3, 2/28/20-1.7
8/16/19 - 11/23/19 FOLFOX - 8 rounds
10/9 flex sig ~30% shrinkage 11/27/19-a bit more shrinkage
Neulasta 9/29/19, 10/27/19, 11/24/19
25 days Xeloda and radiation 12/17/2019 - 1/22/20
Robotic LAR 4/14/20 - clear margins - 0/15 nodes
Temp ileostomy

boxhill
Posts: 641
Joined: Fri Apr 06, 2018 11:40 am

Re: Please help, input needed

Postby boxhill » Mon Apr 20, 2020 8:50 pm

I am wondering what kind of pain you are having. You mentioned back spasms. Did you have them before surgery? That's a different kind of pain than the normal post-surgical kind of thing.

My onc told me that gapapentin helps some people with neuropathy. My PCP prescribed it for me in hopes of helping with my Keytruda-caused arthralgia, but it did nothing. Gabapentin is primarily effective for nerve pain. Flexeril is a muscle relaxant that blocks nerve impulses of pain sensation sent to the brain. You aren't suppose to take it with opioids. It sounds as if they are concentrating on your back pain. Maybe because they can't up your dose of oxycodone without you going to the ER.

I distinctly recall having the option of taking 10mg of oxycodone instead of 5 if necessary for a short period after I was off the epidural, and it definitely made a difference and worked well. But back spasms were not the source of my pain.

When I DID have back spasm-type pain for a while many years ago, the best advice I got (from a physical therapist) was to take the pain killer (ibuprofen)on a strict schedule every 3 hours for IIRC 3 days and not wait to feel it. The idea was to break the cycle of pain, and it worked. The pain was gone completely after the 3 days, after having plagued me for a few weeks. Note that I am not suggesting that YOU do this!

I think it is important to understand why they are prescribing those particular meds, and exactly how to take them for maximum benefit. If they didn't explain, call and ask.
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
7/18 and 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: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

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

Re: Please help, input needed

Postby JJH » Tue Apr 21, 2020 2:09 am

boxhill wrote:... Gabapentin is primarily effective for nerve pain. Flexeril is a muscle relaxant that blocks nerve impulses of pain sensation sent to the brain. You aren't suppose to take it with opioids. ...
I think it is important to understand why they are prescribing those particular meds, and exactly how to take them for maximum benefit. If they didn't explain, call and ask.

Ulendon - What boxhill said is very important. If you are taking several different pain medications, your doctor needs to make sure that all of them are compatible with each other. Your doctor can use a Drug-Drug Interaction Checker to see if it is safe to add a new drug.

So far you have mentioned oxycodone, Tylenol, Gabapentin, and Flexeril.

Here are the findings of the Drug-Drug Interaction Checker for these drugs:

If you go to the ER to get some new pain drugs, be sure that the doctor there knows what other drugs you are already taking.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)


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