Here for my Mom

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dauofcamom
Posts: 34
Joined: Sun Apr 22, 2018 7:11 pm

Here for my Mom

Postby dauofcamom » Sun Apr 22, 2018 8:58 pm

Hello,
I'm new here although I've been reading the board for the past three weeks, ever since my mom had a colonoscopy and it showed a secum mass, which ended up being malignant. She had a right hemi two weeks ago and spent six days in the hospital recovering. My mom is 75 and in good health, although she smoked for 50 years. She hasn't been in a hospital since the '70s and doesn't take any meds. So she really is in remarkable health given her age and smoking history.

The pathology from the surgery came back T4N1M0. The tumor had grown into her abdomen wall and ileum. Fifteen nodes were checked and one showed signs of cancer.

My mom is very naive when it comes to medical stuff. She's never sick and doesn't go for regular check ups. She'd never had a colonoscopy until she finally went to the doctor because the pain in her right side was becoming unbearable. (It is so frustrating to me that mom never, ever puts herself first and does not go to the doctor because she doesn't want to be a "bother" when she says she feels just fine.)

We don't have a meeting with an oncologist yet, but will have one this week (waiting for call tomorrow). I live on the opposite coast from my mother but flew out here to be with her for surgery and now her follow up appointments. I'm going to stay at least until she starts chemo so I can help see her through the first couple weeks. I have a husband, child, grandchild and job back home so I can't stay here indefinitely. I have a brother (who is awesome) and two aunts that are here and will help any way they can. Plus my mom has a couple friends that will be good support.

I'm all over the page and my post probably doesn't make sense. I have a million questions. The pathology didn't come back with a "stage" and the surgeon said it was either 3b or 3c. I guess the oncologist will confirm that but I've been convinced it's 3b, for obvious reasons. Now I'm reading more about the T4N1M0 report and I'm thinking it's more likely she's 3c. Does anyone know?

Can someone tell me what the typical chemo treatment will be like? What is the protocol? How many days on and how many days off? I can't seem to find those answers. I'm sure it's probably different for everyone, although much of what I read says treatment is pretty standard.

My mom is the sweetest, kindest person. I absolutely kills me to see her in pain or think of her being scared. Her pain is mostly gone now but I know she is scared, as we all are. She doesn't want to do any internet research, which in her case is probably a good thing since she won't understand what she is reading and will end up misreading something and thinking the worst.

This sounds so stupid but I don't know what I don't know. We've never had cancer in our family. (My grandmother--mom's mom--is 96 and other than losing her hearing, she's fine and still lives by herself!). I don't know what are the most important things for me to know in order to help my mom. I eventually have to go back home and I'm feeling guilty about not being here the whole time with her, although my mom has done nothing to make me feel guilty. She is so grateful that I am here to help. I plan to visit as frequently as I can, but this just sucks on every level.

Any advice on anything?

My heart goes out to everyone who is fighting this terrible disease.
Long Distance Caregiver to 75 year old Mom
3/2018 - colonoscopy, DX malignant cecum mass
4/2018 - right hemi
Stage IIIC - T4bN1aM0
MSI High
5/2018 - Xelox Regime
10/2018 - peri Mets discovered
10/2018 - Start Keytruda every 3 weeks
12/2018 - scan all clear

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Here for my Mom

Postby NHMike » Sun Apr 22, 2018 10:09 pm

I use this chart: https://cancerstaging.org/references-to ... Medium.pdf and it has T4a and T4b. It looks like she'd be IIIb if T4a and IIIc if T4b.

The main treatments are FOLFOX or CAPOX (sometimes written XELOX). Both use 5FU and Oxaliplatin. Folfox may have something else in it. With FOLFOX, I think that you do two week cycles with an infusion of Oxaliplatin on the first day and then about two days of 5FU via a pump that you carry around with you. The standard regimen is 12 of these. With CAPOX, you have three week cycles where you do an Oxaliplatin infusion the first day and take pills in the morning and evening for two weeks. The standard regimen is 8 of these so it winds up being about the same amount of time.

The biggest issues are usually the side-effects from the Oxaliplatin which include neuropathy in the fingertips, cold sensitivity, throat closing (when drinking cold things), cramps, first bite (first bite of food is painful), painful tears, fatigue, nausea, eye cold sensitivity.

It can be a pretty rough time. I'm going through this right now. I had my sixth cycle of CAPOX two weeks ago and my main issues right now are neuropathy and hands and feet (feels like arthritis in your hands and feet) from the Xeloda (5FU in pill form).

Your mother sounds like she will need some help and support, probably someone to drive her from/to the hospital for infusions. You can become more tired and sometimes fatigued and disoriented (I've fallen down the stairs twice emptying the bag at night). It sounds like you have a plan - and you'll get information here and elsewhere. It would be probably be helpful if she and her caregivers were informed. It can take some time to take all of this in and it's pretty hard to understand how rough this can be if you haven't gone through it yourself. I wish the best for your mother in getting through this.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

Re: Here for my Mom

Postby TXLiz » Mon Apr 23, 2018 9:46 am

https://emedicine.medscape.com/article/2005487-overview

This gives an overview of treatment.

Sorry your mom has this. I hope the treatment helps her.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
MSI-high
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear


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