What can I do for mom?

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Scilla
Posts: 23
Joined: Tue Apr 11, 2017 4:09 am

What can I do for mom?

Postby Scilla » Tue Apr 11, 2017 5:07 am

My mother was recently diagnosed with RC and CRC. Turns out she's been having problems with diarrhea the past 2-3 years, but never told anyone. Doctors said there are "areas compatible with metastasis" on her liver, as well as a couple of "spots" on her right lung which could or could not be metastasis.

Surgery is not an option right now due to tumor sizes (RC 5cm and CRC 9cm) and growth into non-operable stuff (which I don't know what is), so the plan is three rounds of CAPOX and then re-evaluate. First chemo was supposed to be last week. It was, however, canceled as my mom had had diarrhea for 4 days prior to this, so she was dehydrated, dizzy and very weak. They didn't dare to start the treatment when she was in such a bad condition. She got medication to stop the diarrhea, which worked. Now Easter is coming up and where we live everything is shut down for about a week due to the holidays. Don't know when they will re-schedule her chemo.

I'm trying to get her in shape for chemo, so I cook her favorite dishes for her, store some portions in the freezer and urge her to move around as much as possible. I have a family myself with 2 young kids and I work full time, so I can't be with my mom every day - we live three hrs away. It seems however like she spends most of her time in bed with the TV on. She doesn't get up unless I'm there and tell her to get out of bed. She doesn't cook any food herself, she'll just take a couple of crackers. She doesn't even bother to take out the portions I've put in her freezer, heat them and eat them.

I don't know what to do.
Supporter of mom 68 yr
Dx RC CRC 03/17
Rectal tumor 5cm, colon tumor 9cm
Liver mets,
"Spots" on lungs, probably not mets
04/2107 CAPOX scheduled to begin, but postponed as she was too weak.
04-05/2017 CAPOX Started twice, stopped due to side effects.
05/2017 One week of radiation to rectal tumor.
06/2017 Irinotecan+Bevacizumab

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WriterGirl1969
Posts: 418
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: What can I do for mom?

Postby WriterGirl1969 » Tue Apr 11, 2017 11:37 pm

Hi Scilla.
This sounds like a very difficult situation. Is there any way you can talk to her doctors to see if there's more than you can do for her with regard to her keeping up on eating and caring for herself? Usually at oncology they also have social services of some kind that you can talk to. Maybe your Mom is feeling depressed? It's worth talking to some people.

Will keep you both in my prayers.
Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Left Hemi
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
3/6/17 CT clear
NED at 1 year
“If I can help somebody as I walk along, then my living shall not be in vain.”

ACPdiddy
Posts: 28
Joined: Wed Apr 12, 2017 4:01 pm
Facebook Username: Albert Pierce

Re: What can I do for mom?

Postby ACPdiddy » Wed Apr 12, 2017 4:47 pm

That sounds a bit like depression to me, which would be totally understandable. If that were the case, dealing with that would probably help take care of some of the other issues.
I don't know if it's the same everywhere, but the social workers at my cancer center are "free". As in, you aren't billed for their services as long as you're getting your cancer care there. Seems like a social worker could be a big help to you and your Mom in this situation.
Worth trying anyway, I would think.

PainInTheAss
Posts: 655
Joined: Tue Jul 02, 2013 3:08 am

Re: What can I do for mom?

Postby PainInTheAss » Sat Apr 15, 2017 12:43 am

Yes, that was me post surgery. I was totally depressed and also in incredible pain. Also, the rectal cancer can be so painful that you don't want to eat (nothing going in means nothing going out). I was barely eating before diagnosis because pooping hurt so bad. I also had terrible diarrhea for about a month. They didn't know what was causing mine, but it sound s like her tumors are aggravating her colon. The colon might be trying to flush them out, like constipation. She probably feels absolutely terrible and no energy because no calories.

I was in the hospital for a week from this at diagnosis. What helped me the most was going on a liquid diet until the diarrhea stopped. Since she is home, you can try getting a styrofoam cooler and set it by her bed. Jello, sweet tea, chicken broth (this would need to be heated), ensure or carnation instant breakfast, etc. The liquid diet can help reset the system. It did for me. Focus on calories, not eating. Could you have her stay with you for a while? They pretty much made me consume my liquid diet calories in the hospital. After about five days of the liquid diet, I was on a low residue diet for a while and stayed on that during chemo/radiation. I didn't have any problems with excessive diarrhea after that.

I also saw a nutritionist before I started chemo/radiation to get a list of foods that would help me avoid diarrhea during chemo/radiation. Maybe a nutritionist could help put together a liquid diet and low residue diet to get her diarrhea under control and her energy back up. When I did this, it was my idea. They told me I would have to stop treatment if my diarrhea got out of control so I took steps to control it. Don't wait for her doctors to recommend something like this.

She really needs to start chemo ASAP. She will feel a lot better when her tumors start shrinking. She may become a surgical candidate if they shrink enough. They don't always tell you that up front.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

Rainykatie
Posts: 28
Joined: Wed Apr 19, 2017 2:58 pm

Re: What can I do for mom?

Postby Rainykatie » Thu Apr 20, 2017 4:14 pm

Hi there. I am new here, so I'm still trying to take this all in while surfing around this forum for information. Since I am brand new, I don't have much to offer but I wanted to introduce myself and make a connection since our stories are similar- my mom was just diagnosed (last week) with stage IV and it has spread to her liver. She was in the hospital last weekend for dehydration and because a colonscopy ordered to GI issues identified a tumor. The follow up CT scan showed the cancer has spread to her liver.

I am in the same waiting game as you. My mom is really not doing very well and feels terribly. She can't eat because she is so much pain. They sent her home with pain meds and anti-nausea meds and we are just waiting anxiously for her first appointment with the oncologist, which is tomorrow. She's already had her chemo port installed.

Like you I am a mom of two young kids (4 and 2), so it pretty much eats up all of my time and energy to be a mom to them. My mom moved in with us temporarily so she has support, but I work full time (as does my husband) and I can barely manage things as is. Like you I am also feeling pretty worried and overwhelmed, and I don't know what I can do for her right now. It is nice to have my mom in the house with me but it is still the same thing- she tries to eat but can't. I am worried that they will tell her the same thing about starting chemo since she is so weak.

Anyway. I'm sorry I'm not being much help. I just want you to know that I am going through something similar. Perhaps we should stay connected to support each other!
Caregiver to my mom (73)
Dx Stage IV w/ liver mets 4/14/17
Folfox started 4/25/17 - present

Scilla
Posts: 23
Joined: Tue Apr 11, 2017 4:09 am

Re: What can I do for mom?

Postby Scilla » Fri Apr 21, 2017 3:12 pm

Thanks for all the replies, this is such a wonderful site! I've read so many posts, learned so much and been inspired by all your stories, your courage and helfulness.

I don't think my mom is depressed, I just think the disease drains her from energy and motivation. She is very very tired, suffers a lot from diarrhea and has lost a lot of weight the past 2 months, she weighs about 95 lbs and she's about 5' 4". She used to weigh 135 lbs. She has a tumor in her rectum, which is very painful, so she'll do anything to keep her stools loose. This even means not to take the medication that is meant to stop the diarrhea. The doctors say she cannot start chemo, when she's this weak and has diarrhea on and off. So right now she's not getting any treatment and I'm getting worried. She's just lying in her bed getting weaker by the day.

How fast do rectal and colon tumors grow, while she's not getting any treatment? How efficient is CAPOX in reducing tumors - they were 5 and 9 cms a month ago. How many months/rounds of CAPOX would it take to reduce the tumors to a size that could make surgery a realistic option?

I'm so scared that what I'm witnessing is the beginning of the end for my mom.
Supporter of mom 68 yr
Dx RC CRC 03/17
Rectal tumor 5cm, colon tumor 9cm
Liver mets,
"Spots" on lungs, probably not mets
04/2107 CAPOX scheduled to begin, but postponed as she was too weak.
04-05/2017 CAPOX Started twice, stopped due to side effects.
05/2017 One week of radiation to rectal tumor.
06/2017 Irinotecan+Bevacizumab

ACPdiddy
Posts: 28
Joined: Wed Apr 12, 2017 4:01 pm
Facebook Username: Albert Pierce

Re: What can I do for mom?

Postby ACPdiddy » Tue Apr 25, 2017 10:42 pm

I'm sorry... that sounds really stressful. I hope things have maybe taken a turn for the better.
If not, I hope you can get some extra time with a doctor, nurse, and/or nutritionist to try and figure out a strategy for getting your Mom feeling better so she can start chemo.
But, until then, I'd start with Gatorade type drinks to get her hydrated. I got myself into pretty bad shape once when I couldn't eat. I was just drinking water, and my electrolytes got depleted and I ended up in the hospital.
And Ensure Clear will give her some calories with nothing to pass through her lower digestive tract.
After that, a low residue diet should give her more calories without too much passing through her colon.
But please talk to a professional about this, so she can get well enough to start chemo.

Rainykatie
Posts: 28
Joined: Wed Apr 19, 2017 2:58 pm

Re: What can I do for mom?

Postby Rainykatie » Wed Apr 26, 2017 8:58 am

Hi, how is your mom doing? I have been thinking about you since I am going through this with my mom.

My mom started chemo yesterday. I am interested to read about the low residue diet and the other comments about Ensure clear. That might help my mom, who is not interested in eating either.

Hope you are doing ok and that your mom is doing better.
Caregiver to my mom (73)
Dx Stage IV w/ liver mets 4/14/17
Folfox started 4/25/17 - present

mtipte
Posts: 78
Joined: Mon Dec 19, 2016 4:35 pm
Facebook Username: mario tipte
Location: Lima, Peru

Re: What can I do for mom?

Postby mtipte » Fri Apr 28, 2017 10:09 pm

I am my mum's caregiver too. It demands time and energy. What I do is I try to cook everything that is healthy and anti cancer, take her out to the park, comedy programmes , etc. She made some friends her age from church so if she can't attend they call her, it cheers her up.

Hope everything turns out well!

Hope!
Dear Mum 60 y/o
dx 09/16 RC III CEA 9
Chemo/rad 28 from 10/16 till 12/16
Xeloda
multiple lymph nodes
Adenocarcinoma low grade invasive
Now 2000 mg Xeloda for 2 weeks as maint. before surg.
24/01/17 CEA 4,9
APR surgery permanent colostomy :( 24/03/17
3/26 nodes involved -LVI - clean margins
Staged after surgery: T3N1Mx
Infection due to bladder problems. Slow recovery.
CEA 1.7 :)
Adj. Chemo Xelox 6 rounds 29/04/17
After round 3 CT Scans Clear 15/07

God is faithful. Only Jesus.

Scilla
Posts: 23
Joined: Tue Apr 11, 2017 4:09 am

Re: What can I do for mom?

Postby Scilla » Sun Apr 30, 2017 4:06 am

Thanks everyone. We live in Europe, so everything is a bit different here, but I'll take all the advice I can get :-)

My mom is taking meds to stop the diarrhea, it hasn't kicked in 100% yet, but hopefuly it will. She's started to feel slighty better, probably because she's now able to get some nutrion/calories from the food and drinks she gets. She's still way too skinny, weak and frail and I have no idea how she's going to be able to make it to the chemo treatment that is supposed to start next week.

My mom has a rectal tumor that really bothers her. Passing gas and stools is incredibly painful and she has lost control of the sphincter muscles, so she's wearing diapers. She never knows when, how much and whether diaper will leak. Sorry if I'm being too literate. But because of this, it's completely unthinkable for her to leave her home. She won' even let me take her for a drive. Also painful for her to sit up because the rectal tumor is now so close to the av and there are no muscles or fat left on her butt.

Docs have said that exercise is good and that it's important she's stays active. However, my mom has never been physically active and the past couple of months she has been lying in bed, only getting up when she needed to go to the bathroom. I try to drag her out of the bed, urge her to walk a few rounds every so often, but she is not easy to work with. She doesn't have any energy and her muscles have completely disappeared, so there's a huge barrier for her to get out of that freaking bed. Really frustrating and I don't know what to do.

I've read a lot about diet and supplements on this board. I've also talked to a nutritionist about what to cook for her to help her gain (or keep) weight. I've done a lot of research and really want her to benefit from everything that I've learned, and also follow doctors' and nutritionist's advice, but it doesn't always feel like my mom and I are on the same team. She's soooo reluctant to get up on her feet, move around, eat or drink the energy-protein-vitamin-loaded food and drink I serve for her. I serve very small portions, I know that's the way to go. I try to be very positive with her - encourage, cheer and applaud, being careful not to criticize - but when I get home, I'm soooo frustrated that I want to scream. One day when she must have sensed my frustration, she snapped at me saying "I'm doing everything I can". But my problem is that honestly, I don't think she's doing enough. To me, it looks like she's hardly doing anything at all. I know I may sound like a terrible and disrespectful daughter, but I really needed to vent those feelings. Maybe I need to see a counselor. Has anybody has similar issues, would like to hear from you.
Supporter of mom 68 yr
Dx RC CRC 03/17
Rectal tumor 5cm, colon tumor 9cm
Liver mets,
"Spots" on lungs, probably not mets
04/2107 CAPOX scheduled to begin, but postponed as she was too weak.
04-05/2017 CAPOX Started twice, stopped due to side effects.
05/2017 One week of radiation to rectal tumor.
06/2017 Irinotecan+Bevacizumab

zephyr
Posts: 28
Joined: Thu Aug 18, 2016 7:31 am

Re: What can I do for mom?

Postby zephyr » Sun Apr 30, 2017 9:07 am

Scilla wrote:I have a family myself with 2 young kids and I work full time, so I can't be with my mom every day - we live three hrs away.


Switching the focus for just a moment, you are working three full-time jobs between family, work, and caring for your mother. If that's not challenging enough, you live three hours away?! You must be exhausted. I don't know where you are going to find the time but try to take time out for yourself whenever possible, even if just for a few minutes each day. Maybe it's a longer shower, or a bathtub soak, or a cup of coffee/tea all by yourself, or a few quiet minutes on bench in the park. If possible, schedule a lunch with someone who makes you laugh ... or a friend/counselor who will just listen and let you vent. I imagine your stress levels are off the charts and I think your health will begin to suffer if you don't find a way to let go of some of it. Sending you peaceful energy. :)
Oct-09 Stage I CC
Jun-16 Stage III (T3 N1c)
Jun-16 Surgery
Jul-16 Probable Stage IV with inoperable lung mets
Aug-16 FOLFOX
Jan-17 Dropped Oxi, continuing with 5FU & Avastin

Rainykatie
Posts: 28
Joined: Wed Apr 19, 2017 2:58 pm

Re: What can I do for mom?

Postby Rainykatie » Sun Apr 30, 2017 8:13 pm

Hi again Scilla,

I totally understand what you are going through and I'm sorry to hear that you are having a difficult time. When I take my mom to the doctor they say the same thing, oh, just have her eat and walk around, blah blah blah, but like your mom, mine has also been lying in bed for a month now. My mom is also in a ton of pain and uncomfortable from her tumors.

So, I was thinking they weren't go to start my mom on chemo last week as planned because she is so weak (and also got dizzy like your mom), but they did. She has made it through one round of Folfox so far and it didn't really seem like anything has changed. She even seemed to perk up a little bit, which I think is probably because she was feeling relieved to finally be taking a proactive step to fight her tumors.

Like your mom, my mom is not eating very much at all. I am also trying to cook different things and follow the advice of the nutritionist, but it is challenging and frustrating when she takes only two sips of a shake I made. It's heartbreaking to watch her, because she feels terrible.

I don't have any great advice for you as I'm a newbie too. Just commiserating here! I hope things get better and that your mom can start chemo soon, keep us posted.
Caregiver to my mom (73)
Dx Stage IV w/ liver mets 4/14/17
Folfox started 4/25/17 - present


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