New supporter here- Mom with Stage IV

Please feel free to read, share your thoughts, your stories and connect with others!
Rainykatie
Posts: 35
Joined: Wed Apr 19, 2017 2:58 pm

Re: New supporter here- Mom with Stage IV

Postby Rainykatie » Fri May 05, 2017 1:27 pm

ACPdiddy wrote:I'm so sorry things haven't taken a turn for the better yet. I know the cancer road can seem just hopelessly grim sometimes. But I'd really encourage you to stay hopeful. That rapid descent into illness that your mother has just gone through... I've been through that twice. Both times I had surgery and recovered to feeling basically 100%. I was 44 when I was diagnosed, so my recoveries were easier than your Mom's may be. But you should both keep in mind that it can happen.

When I've gone on liquid diets because of bowel obstructions, I've had some luck with chicken broth and olive oil. It's a little bit of a hassle since the oil floats on top of the broth (and the broth has almost no calories). But I'd basically pour some oil into the broth, drink a couple sips of broth/oil until I had swallowed all the oil, then add more oil. I found the mixture tasty and the oil has lots of calories. If olive oil isn't your Mom's thing, try something else (avocado, sesame, walnut, coconut oils would probably all be pretty tasty). Or if she prefers sweet, see if you can find some whole milk kefir. A lot of places carry this brand http://lifewaykefir.com/family/kefir/ It's basically drinkable yogurt. The whole milk version has way more calories. The problem I found with many liquid drinks is that they're for people trying to lose weight, so they'll use artificial sweeteners, skim milk, etc., to keep the calories down. That whole milk kefir was the most calorie dense thing I could find.

Also, do you think you could get your Mom to try some medical THC products (medical marijuana)? I know just the idea of that will turn some people off strongly. But if you can get your head around the idea, it could really help. I used it for a while for pain and difficulty sleeping. I only used it at bed time, but it worked like a charm for me. It should work to stimulate her appetite as well. I imagine it would be very easy to get in Washington. They sell THC vape pens now, and THC gumdrops, cookies, whatever. There's no smoke, no smell, it's easy. And you know, it will either work or it won't. If it doesn't, it won't have cost you much time or money. If it does, it might help a lot if the side effects are better than the other drugs she's taking. I don't know. Something to think about.


Thank you ACPdiddy for the reply! It is very heartening to hear that it is possible to recover from this sort of rapid descent into illness. I know my mom is older, but she has been in excellent health her entire life. Seriously, up until a few months ago she ran faster than I could. So, I'm hopeful that she will be able to recover a bit from this and enjoy some good days to come.

Thanks also for the suggestions about the liquid diet. You are so right that most liquid options are geared for folks wanting a low calorie option! I've been trying to add oil to everything. Your broth and olive oil suggestion worked well the other day! I bought some kefir too, but she can't seem to be too interested in it. For the past few days we've been having good luck with milkshakes. I went to Jamba Juice and ordered the most calorie dense thing they had. It's funny because my mom was such a health food junkie her whole life, and now she's drinking milkshakes. But I'm just happy she's drinking something!

As for the cannabis oil, we have tried it. We live in Oregon so it's legal both medicinally and recreationally, so I just went to a store to buy some. I got some CBD oil with a very low THC content, since my mom has never used marijuana before in her life. I also got one of the vape pen things you mention. She has tried it a few times, and I think it has really helped. It has improved her mood and her appetite. However, I think after 70+ years of being pretty straight edge, she's having a hard time accepting it. She keeps blaming things on it, for example, one day when she used it she had a lot of pain that night. I don't think it was related since there have been other days she hasn't used it and has had the same pain, but she keeps blaming it on the marijuana. I think you're right that it is just hard for some people to get their head around the idea. It's unfortunate because it does seem to be helping, and her oncologist recommended it too.

It's been a roller coaster. Yesterday was a "good day" and I got her to eat around 1000 calories and she was perky and chatty. Today too looks to be a good day! She got up and wanted to eat and I even made her a latte, her old favorite and something she hasn't had in weeks. I'm at work and my husband and the kids are home with her today, and she just sent me a selfie of her with my two kids! That says a lot, since she has mostly been in bed lately. But I am still so worried about what's to come and also worried about holding everything together as far as my job and family, as we go through this. My husband has started having issues with depression this week. He's such a happy go lucky guy, that it's a bit shocking. I think he was kind of holding everything in for the first few weeks because I was a mess, but now that I've been finding some more strength he is able to let his emotions rise to the surface.

I just read another thread about the dangers of administering FOLFOX to the elderly. The woman in the other post was 90, but there was a study cited in one post that showed very little chance of a 3-5 year outcome with FOLFOX to people over 70. Now I'm feeling worried and a bit discouraged. We go for her next round of treatment on Tuesday.
Caregiver to my mom (73)
Dx Stage IV w/ liver, bone mets 4/14/17
Folfox started 4/25/17 - 8 rounds
Took a 6 week break to check some things off the bucket list - great response from chemo - everything shrunk and liver tumors virtually gone
CT scan 9/2017 showed spread to ovaries- laparoscopic surgery at MSK
Resumed Folfox 10/23/17 - 1 round
Surgery to remove primary tumor due to discomfort, 11/7/17. Trouble with recovery, numerous mets to abdomen area found
Passed 12/5/17

canadiandaughter
Posts: 676
Joined: Sun Aug 17, 2014 11:19 am

Re: New supporter here- Mom with Stage IV

Postby canadiandaughter » Fri May 05, 2017 7:29 pm

We had my dad drinking one or two boosts or ensures a day to keep up with his calories. I am not sure what you call it in the USA. When my daughter some dental surgery, she was supposed to drink them as well, but she hated the taste, so we mixed it with ice cream for a shake. Maybe something like that would work if she has been enjoying the milkshakes?
DD to 81 year old father
dx 24/07/14 iv cc mets liver/lung
folifiri started 19/07/14
shrinkage of all mets
growth in the liver,started folfox/avastin 80% 13/01/16
reduced to 70% due to side effects 27/01/16
First scan on folfox shows shrinkage in lungs, but liver just stable
6 rounds of vectibix-fail. 3cm growth and new spots showing Waiting for panel recommendations
At peace January 8, 2017

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: New supporter here- Mom with Stage IV

Postby MissMolly » Sat May 06, 2017 12:04 am

RainyKatie:
You have mentioned that your mother has her roots in being physically active and eating quality foods.

Your mother might prefer a nutritional drink called "OrGain" in leu of commercial Boost or Ensure.

"OrGain" is a nutritional, high calorie drink that has only organic ingredients and absolutely NO high fructose corn syrup. "OrGain" was developed by a physician who was, himself, going through chemotherapy for cancer. "OrGain" was designed to fill a need for people who need nutritional support but who want a whole-food supplement that is not highly processed and does not contain excessive sugars.

You can find "OrGain" on Amazon.com as sand many pharmacies as well as Whole Foods. It comes in single-serve 8 oz fresh pack paper cartons, four 8 oz. cartons in a pack.

I am of frail health and drink OrGain on a regular basis. The taste is pleasing. I actually enjoy it.
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

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

Re: New supporter here- Mom with Stage IV

Postby ACPdiddy » Sun May 07, 2017 7:40 pm

Rainykatie wrote:It's been a roller coaster. Yesterday was a "good day" and I got her to eat around 1000 calories and she was perky and chatty. Today too looks to be a good day! She got up and wanted to eat and I even made her a latte, her old favorite and something she hasn't had in weeks. I'm at work and my husband and the kids are home with her today, and she just sent me a selfie of her with my two kids! That says a lot, since she has mostly been in bed lately. But I am still so worried about what's to come and also worried about holding everything together as far as my job and family, as we go through this. My husband has started having issues with depression this week. He's such a happy go lucky guy, that it's a bit shocking. I think he was kind of holding everything in for the first few weeks because I was a mess, but now that I've been finding some more strength he is able to let his emotions rise to the surface.

I just read another thread about the dangers of administering FOLFOX to the elderly. The woman in the other post was 90, but there was a study cited in one post that showed very little chance of a 3-5 year outcome with FOLFOX to people over 70. Now I'm feeling worried and a bit discouraged. We go for her next round of treatment on Tuesday.


Hi Rainykatie,
I'm very happy to hear you're having some good days. Hopefully it's the chemo shrinking the cancer, but whatever it is, enjoy it. Hopefully you can turn these few good days into a bunch more.

I know you've got all the reasons in the world to worry, but I'd still encourage you to do as little of it as you can. The whole bit about "taking it one day at a time" is so cliche, but has felt very true and effective to me. As for your husband having depression issues this week, hopefully that will be an on-and-off thing at worst. I know that my wife and I have been on a sort of emotional see saw at times. When she gets down, I make sure I stay up for her sake. When I break down, she rallies for me. Not that we scheduled it or anything, we just did what we needed to do at the time. I guess it's more complicated with you, your Mom and your husband, but hopefully you can all figure out a way to support each other when and as needed.

As for your Mom and the Folfox for the elderly discussion, do not let that get you down. I found that article and looked into those grim-sounding 70+ numbers. They are not what they seem. I can't speak to exactly what's going on in that other thread. There are too many people discussing too many things, and a 90 year old's situation is different from your Mom's. Here's the paper they're referring to: http://www.ghrnet.org/index.php/joghr/a ... ew/553/610 One problem with this paper for 70+ year olds is that there aren't enough 70+ patients in their data sets. In the figure "A: Mayo Clinic Protocol" there are only ten 70+ year old patients: 7 of them are 70-79 and 3 are 80+ years old. And sure, none of them lived 5 years, but 7 out of 10 were alive at 2-1/2 years, 5/10 were alive at 3-1/2 years and 3/10 were alive at 4-1/2 years. Then there's figure "B: FOLFOX4 protocol" Apparently all of those 70+ year old patients died in less than 1 year. That looks terrible. Except there was only one 70+ year old patient in that group. That one patient didn't live long, but that says almost nothing about how long older patients survive on average. I think given your Mom's health and wellness, and the fact that she's barely into the 70+ bracket, it makes sense to compare her to the 60-69 year olds. And if you look at the 60-69 year olds in those charts, their prognosis is essentially the same as for all the younger age groups. And also remember that those plots show deaths from all causes. So if some of those 70-80+ year old patients died of other ailments (heart disease, stroke, etc.) that your Mom is not at high risk for, it looks bad on those charts, but it's not relevant to your Mom's situation. So please, do not let that discussion get you down.

I would though, next time you're at the cancer center, ask what the plan is going forward. Do they plan on removing the primary tumor? I don't know if there's some reason why they can't, but it's my understanding that survival is improved if the primary is surgically removed. And I don't know the exact details of your Mom's metastases, but depending how many there are, how large they are and where they are, it's possible they could be surgically removed too. Most stage IV patients have too many tumors for this, but if your Mom qualified for surgical resection of her metastases, that would significantly increase her expected lifespan. Ask for an appointment with a surgeon. Whatever the oncologist thinks is probably the case, talk to a surgeon anyway. It's very much a judgment call. Dana Farber told me my liver metastases were unresectable. MGH and Sloan Kettering said they could get them out. (Ultimately, other issues prevented me from getting this surgery.) But get an opinion on that. It seems strange to me that you haven't seen a surgeon already (or have you?). I hope they're not just seeing your Mom in her current state and thinking she's too frail for surgery to be worthwhile. (Remember, they don't know what great shape she was in a month ago.)

Good Luck!
Al

Rainykatie
Posts: 35
Joined: Wed Apr 19, 2017 2:58 pm

Re: New supporter here- Mom with Stage IV

Postby Rainykatie » Tue May 09, 2017 7:18 pm

canadiandaughter wrote:We had my dad drinking one or two boosts or ensures a day to keep up with his calories. I am not sure what you call it in the USA. When my daughter some dental surgery, she was supposed to drink them as well, but she hated the taste, so we mixed it with ice cream for a shake. Maybe something like that would work if she has been enjoying the milkshakes?


Hey canadiandaughter- thank you so much for this suggestion! It has worked really well. My mom can't seem to stand the nutrition shakes (too "processed" for her tastes), but blending some Orgain up with ice cream and a banana has worked great. Thank you!
Caregiver to my mom (73)
Dx Stage IV w/ liver, bone mets 4/14/17
Folfox started 4/25/17 - 8 rounds
Took a 6 week break to check some things off the bucket list - great response from chemo - everything shrunk and liver tumors virtually gone
CT scan 9/2017 showed spread to ovaries- laparoscopic surgery at MSK
Resumed Folfox 10/23/17 - 1 round
Surgery to remove primary tumor due to discomfort, 11/7/17. Trouble with recovery, numerous mets to abdomen area found
Passed 12/5/17

Rainykatie
Posts: 35
Joined: Wed Apr 19, 2017 2:58 pm

Re: New supporter here- Mom with Stage IV

Postby Rainykatie » Tue May 09, 2017 7:19 pm

MissMolly wrote:RainyKatie:
You have mentioned that your mother has her roots in being physically active and eating quality foods.

Your mother might prefer a nutritional drink called "OrGain" in leu of commercial Boost or Ensure.

"OrGain" is a nutritional, high calorie drink that has only organic ingredients and absolutely NO high fructose corn syrup. "OrGain" was developed by a physician who was, himself, going through chemotherapy for cancer. "OrGain" was designed to fill a need for people who need nutritional support but who want a whole-food supplement that is not highly processed and does not contain excessive sugars.

You can find "OrGain" on Amazon.com as sand many pharmacies as well as Whole Foods. It comes in single-serve 8 oz fresh pack paper cartons, four 8 oz. cartons in a pack.

I am of frail health and drink OrGain on a regular basis. The taste is pleasing. I actually enjoy it.


Hi Miss Molly! Thanks for the suggestion- I picked some up on your recommendation and tried it with canadiandaughter's suggestion of blending it with ice cream. It worked great, and my mom says she prefers the taste of the OrGain to the Ensure. Appreciate the help!
Caregiver to my mom (73)
Dx Stage IV w/ liver, bone mets 4/14/17
Folfox started 4/25/17 - 8 rounds
Took a 6 week break to check some things off the bucket list - great response from chemo - everything shrunk and liver tumors virtually gone
CT scan 9/2017 showed spread to ovaries- laparoscopic surgery at MSK
Resumed Folfox 10/23/17 - 1 round
Surgery to remove primary tumor due to discomfort, 11/7/17. Trouble with recovery, numerous mets to abdomen area found
Passed 12/5/17

Rainykatie
Posts: 35
Joined: Wed Apr 19, 2017 2:58 pm

Re: New supporter here- Mom with Stage IV

Postby Rainykatie » Tue May 09, 2017 7:25 pm

ACPdiddy wrote:
Rainykatie wrote:

Hi Rainykatie,
I'm very happy to hear you're having some good days. Hopefully it's the chemo shrinking the cancer, but whatever it is, enjoy it. Hopefully you can turn these few good days into a bunch more.

I know you've got all the reasons in the world to worry, but I'd still encourage you to do as little of it as you can. The whole bit about "taking it one day at a time" is so cliche, but has felt very true and effective to me. As for your husband having depression issues this week, hopefully that will be an on-and-off thing at worst. I know that my wife and I have been on a sort of emotional see saw at times. When she gets down, I make sure I stay up for her sake. When I break down, she rallies for me. Not that we scheduled it or anything, we just did what we needed to do at the time. I guess it's more complicated with you, your Mom and your husband, but hopefully you can all figure out a way to support each other when and as needed.

As for your Mom and the Folfox for the elderly discussion, do not let that get you down. I found that article and looked into those grim-sounding 70+ numbers. They are not what they seem. I can't speak to exactly what's going on in that other thread. There are too many people discussing too many things, and a 90 year old's situation is different from your Mom's. Here's the paper they're referring to: http://www.ghrnet.org/index.php/joghr/a ... ew/553/610 One problem with this paper for 70+ year olds is that there aren't enough 70+ patients in their data sets. In the figure "A: Mayo Clinic Protocol" there are only ten 70+ year old patients: 7 of them are 70-79 and 3 are 80+ years old. And sure, none of them lived 5 years, but 7 out of 10 were alive at 2-1/2 years, 5/10 were alive at 3-1/2 years and 3/10 were alive at 4-1/2 years. Then there's figure "B: FOLFOX4 protocol" Apparently all of those 70+ year old patients died in less than 1 year. That looks terrible. Except there was only one 70+ year old patient in that group. That one patient didn't live long, but that says almost nothing about how long older patients survive on average. I think given your Mom's health and wellness, and the fact that she's barely into the 70+ bracket, it makes sense to compare her to the 60-69 year olds. And if you look at the 60-69 year olds in those charts, their prognosis is essentially the same as for all the younger age groups. And also remember that those plots show deaths from all causes. So if some of those 70-80+ year old patients died of other ailments (heart disease, stroke, etc.) that your Mom is not at high risk for, it looks bad on those charts, but it's not relevant to your Mom's situation. So please, do not let that discussion get you down.

I would though, next time you're at the cancer center, ask what the plan is going forward. Do they plan on removing the primary tumor? I don't know if there's some reason why they can't, but it's my understanding that survival is improved if the primary is surgically removed. And I don't know the exact details of your Mom's metastases, but depending how many there are, how large they are and where they are, it's possible they could be surgically removed too. Most stage IV patients have too many tumors for this, but if your Mom qualified for surgical resection of her metastases, that would significantly increase her expected lifespan. Ask for an appointment with a surgeon. Whatever the oncologist thinks is probably the case, talk to a surgeon anyway. It's very much a judgment call. Dana Farber told me my liver metastases were unresectable. MGH and Sloan Kettering said they could get them out. (Ultimately, other issues prevented me from getting this surgery.) But get an opinion on that. It seems strange to me that you haven't seen a surgeon already (or have you?). I hope they're not just seeing your Mom in her current state and thinking she's too frail for surgery to be worthwhile. (Remember, they don't know what great shape she was in a month ago.)

Good Luck!
Al


Al, I wanted to let you know how much your post helped me. When I saw that other article, I scanned it in a daze, only picking up on the negatives, and it sent me into a panic. Thank you for looking at it and giving it some thought and responding to me. It has given me reason to feel more hopeful. My mom is indeed in great physical shape, or was until very recently. She has been fortunate to live her life until now with zero health issues, and doctors used to always comment that she seems much younger than her years.

Good suggestion about asking about the plan during our next appointment at the cancer center. Everything happened so fast and we've been learning what we can as we go, and I'm afraid we've been a bit like deer blinking in the headlights each appointment. You've given me some food for thought and a direction in which to steer the conversation.

I brought my mom in today for her second round of FOLFOX. The good news is that her bloodwork was showing dramatically improved liver function since she has started treatment. She seems to be feeling better, too, and I've managed to get her to eat 1400 calories the last few days- a real feat for sure.
Caregiver to my mom (73)
Dx Stage IV w/ liver, bone mets 4/14/17
Folfox started 4/25/17 - 8 rounds
Took a 6 week break to check some things off the bucket list - great response from chemo - everything shrunk and liver tumors virtually gone
CT scan 9/2017 showed spread to ovaries- laparoscopic surgery at MSK
Resumed Folfox 10/23/17 - 1 round
Surgery to remove primary tumor due to discomfort, 11/7/17. Trouble with recovery, numerous mets to abdomen area found
Passed 12/5/17

utenalarosa
Posts: 1
Joined: Sun May 14, 2017 12:49 am
Facebook Username: Teresa Huong Tran

Re: New supporter here- Mom with Stage IV

Postby utenalarosa » Sun May 14, 2017 1:01 am

I lost my mom to colon cancer and now 8 years later my brother was diagnosed with stage IV colon cancer with mets in liver and lungs, so far he has done 2 rounds of chemo and his CEA number went down and side effect from the chemo seems almost not existent i have to said I think is the Fucoidan he has been taking that is helping him. He has very good appetite and gain 5 lbs which to me it's like a miracle because I remember my mom didn't want to eat and she was complaining about the chemo a lot I wished I knew about Fucoidan and gave it to me her maybe she would still with us.


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot], Luna18 and 132 guests