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Colon cancer stage IV

8colon8's picture
8colon8
Posts: 18
Joined: Jan 2019

Hi all,

I am the caregiver to my wife who is dignoased as stage IV colon cancer in June 2018. Joined this group and couple of days later, this site crashed...lol.  Anyway, she will be taking her last Xeloda pills tomorrow. Can we claim this as the last day of chemo?  Her last CEA reading before the start of this last cycle of chemo is 6.2, it started from the 30's to 90's and gradually decreased to the current 6.2...we are not sure what to expect after this.  She will be seeing her oncoligist the following monday to find out what he has planned for her.  He mentioned something about being on maintenance but we are not sure what that entails. Any insight would be helpful.

Also, i read about drinking a full glass of carrot juice daily to help keep cancer away.  Any feed back on this too?

 

Trubrit's picture
Trubrit
Posts: 4460
Joined: Jan 2013

I was hoping we didn't lose any new members with the crash. 

How joyous that your wife is on her last chemo.  I hope for her sake, that she doesn't need additional treatment, and can just be on the watch and wait part of life.  Each Oncologsit follows their own plan, so it is hard to say wether she will continue with a lower dose chemo cocktail or just be taken off completely. 

As for the Carrot Juice. There are so many different things out there, that say 'if you do this, the Cancer won't come back', but alas, one never really knows. What you need to do is read up on things and chose what your (your wife) think will work for her. 

Some folks here take many supplements; some none. Some are on a strict no sugar plan, others just cut it down.  I've been reading up on Curcumin, and take a fancy to supplementing with that. I've never taken supplements, but I'll give it a whirl because it appeals to me. 

I wish you both all the luck in the world, as your wife moves into this new stage.  

Keep us informed. 

Tru

8colon8's picture
8colon8
Posts: 18
Joined: Jan 2019

Thank you for your insight.  I was just wondering if any one on this site ever tried the carrot juice routine.  It's true that we don't have sufficient data from those drinking the juice like at what stage of the disease they started drinking and it made a difference.  

 

flowerrod
Posts: 5
Joined: Jun 2018

hi, i'm a caregiver to my husband with colon cancer stage IV. i feel your pain.... we are curr on the maintenance chemo- Avastin + 5Fu. the side effects are minimum so it's easier to handle it. however, hubby is suffering from neuropathy from the previous drug (oxiplati) the goal is now to be maintenance chemo as long as possible.... if disease progress, we have plan B - the other nasty drug to add. oncologist said everyone is different, but he saw patients going on maintenance chemo for years... so that's the goal. i haven't heard about carrot juice, but we drink beet juice daily as it should help blood... the blood counts so far are stable/good..

8colon8's picture
8colon8
Posts: 18
Joined: Jan 2019

Thank you. That's what she was not looking forward to. We are praying for a non chemo maintenance route. I am not sure she's emotionally ready to go on to an endless chemo regimen. As it is, she was struggling emotionally for the last 10 months throughout this first chemo treament.  She had to take Ativan to help tie her over some days.  Her neuropathy is not as severe, feels tingling only thank God no numbness. What was his CEA at the end of his first treatment if I may ask? Did his oncologist indicate if there is a point where they do not have to go on a chemo maintenance?   

SandiaBuddy's picture
SandiaBuddy
Posts: 539
Joined: Apr 2017

It seems a glass of carrot juice a day would be helpful.  It is not part of my regime, but it must be awfully nutritious.  There is plenty of research about it on pubmed, which is a good resouce for most any medical questions: https://www.ncbi.nlm.nih.gov/pubmed/?term=carrot+juice+cancer

8colon8's picture
8colon8
Posts: 18
Joined: Jan 2019

Thank you. Her oncologist restricted her food consumption to cooked food only and that it has to be no more than 3hours old during treatment. So I read about carrot juice and its effects on cancer and now that she's coming off chemo just wondering if any fellow cancer survivor have experience with it one way or another.  Thank for the link you have provided, definately will check on it.  

Trubrit's picture
Trubrit
Posts: 4460
Joined: Jan 2013

That is the first time in my six years mixing with the good folks here, that I have ever heard an Oncologist suggesting (and it is just a suggestion) that. 

Quite odd! 

I guess it doesn't hurt, so might as well try it. 

We used to have allot of juicers on the forum, when I first got here.  I know a couple who won't be coming back, but a couple more who are doing well and don't post any more.  I hope you find your answer about juicing.  If not, your wife will find something that she believes works for her. Its a very personal thing and sometimes has no medical backup.  I personally like to drink a glass of freshly squeezed orange and lemon juice, every day. Now I can't say that is the only reason I am 5 years (almost - April is almost here) NED, but for me, at least in my head, I believe it. 

Tru

 

 

SandiaBuddy's picture
SandiaBuddy
Posts: 539
Joined: Apr 2017

I took capecitabine (Xeloda) with no dietary restrictions besides "resume normal diet."  I often ate two "uncooked" salads a day with no ill effects.  I guess everyone's situation is different.

8colon8's picture
8colon8
Posts: 18
Joined: Jan 2019

Yes, guess everyone's reaction to the side effects are different also. It's the oncologist... he has a terrible bed side manner anyway.  But my wife has taken his instruction to heart, and I find it pointless fighting it.

8colon8's picture
8colon8
Posts: 18
Joined: Jan 2019

No, it wasn't a suggestion and my wife took it very seriously. She can't eat fruits like strawberry or any food that is grown in the ground uncooked. What's cooked strawberry going to taste like...lol.  We are chinese so she doesn't really eat the raw salad anyway.  I on the other hand loved salad especially when it's covered with lots of dressing.

One of my biggest challenge the last 10 months was getting her to eat, as one of her side effect was the lost of her smelling filter and taste bud. none of the food she used to like smell or taste the same. It is a struggle for her at meal time. We cook typical chinese food, so now frying garlic and ginger is too pungent for her. Ahhhhh.

I agree with you that the head/mind is very important.  I need to find ways to help her find that peace with this situation as her emotion is getting the best of her right now. She has not been able to receive the positive direction her treatment is heading. She was not able to express any joy towards good news.  We are seeing a pyschiatrist that is helping but the medication reacted with the chemo meds causing additional side effects. So we decided to try after her chemo treatment. Yeah, so the goal is to help her get her mind set towards positive thoughts one day at a time.

 

 

SandiaBuddy's picture
SandiaBuddy
Posts: 539
Joined: Apr 2017

Reading between the lines a bit, it seems the "heart and mind" issue may be the more important one for your wife.  Since you mention your Chinese heritage, perhaps she would be open to meditation.  Buddhist philosoply may be a bit different from the practices of traditional Chinese Temples, but many on this board have found meditation helpful. 

8colon8's picture
8colon8
Posts: 18
Joined: Jan 2019

Hi Sandi, yes you hit it on the button. We are Chinese Catholics and we migrated from Singapore.  She's aware of the need to have faith, trust and all that stuff. She knows about various meditation form but is struggling in getting it going.  She just can't find that motivation to get there.  That's my other challenge,  helping her see and feel that the journey forward is achievable. Sighhhh.

SandiaBuddy's picture
SandiaBuddy
Posts: 539
Joined: Apr 2017

Tru often mentions a meditation recording she found helpful.  Perhaps listening to something like that would be easier than reading or practicing in a more traditional manner.  Thank you for your great concern and love for your wife.  I am sure she appreciates it, even if she is preoccupied with other matters now.

8colon8's picture
8colon8
Posts: 18
Joined: Jan 2019

thank you Sandi, I will wait to ask Tru about the audio meditation. Yes, she finds it hard to focus in reading books. Family and friends bought books for her to read, but the books are just sitting on the table. We are trying audio kindle and audio books, problem is that we are not certain of legit authors or titles.

The frustrating part is seeing her getting frustrated at herself for not being able to get out of her depressed condition. Guess only you survivors would know.

anyway thank you for responding.

Joan M's picture
Joan M
Posts: 289
Joined: Oct 2016

I guess we've all hearf of the ecoli scares, and other problems with raw foods that cooking eliminates.  They probably didn't say meat because it's not common to eat uncooked meat - except for those who like their steaks bloody.   I've heard of the lemon water, and other alkaline foods, and also heard about the carrot juice, there must be some good benefits but wouldn't trust any diet alone to cure cancer.  I do believe that a good diet and suuplements can help keep along with the medicine to get rid of it and keep it at bay once you've killed it off.  You'd have to read the results of any studies out there to know and then everyone reacts differently to each and every medicine and supplments I assume.

Wishing your wife the best and hope that her treatment goes well.

Joan  

8colon8's picture
8colon8
Posts: 18
Joined: Jan 2019

Thank you Joan,

Guess the oncoligist was afraid of the ecoli etc from uncooked food. We were told that drinking alkaline water would help, and the oncologist was totally against it. He even told us of a person who died from drinking alkaline water while receiving chemo treatment.  Yeah, he is quite something, though everyone said that he is an excellent oncologist on staff.

Her body is responding positively to the treatment as every test result has shown, it's her head and heart thats having difficulity absorbing this turn of event in her life. Thanl you.

 

Kazenmax's picture
Kazenmax
Posts: 194
Joined: Feb 2016

Just wanted to say that my oncologist has no bedside manner either. He’s rather somber and it’s like pulling teeth to get info from him. My visits are brief and he sometimes seems annoyed with my questions. i was tempted to go to a different doctor. But my husband thought that an oncologist is really a blood doctor. It’s not like a family practitioner who treats the whole body. These doctors are more into the science of solving the problem of cancer. When I complained of side effects, the doctor reminded me that they were temporary. LOL. No empathy, just the facts.

I will be honest. I am easily influenced and if a doctor said oh yea... we can reduce side effects by reducing the dose, I’m ready to do it. So I need a strong doctor who is committed to getting rid of the disease. And so far so good.

i must admit at every visit I look for someway to make the man smile. I believe I’m starting  to grow on him. LOL

Good luck to you and your wife. She’s very lucky to have your support and love. some Times it’s very hard to see the positive when you feel so bad. I hope things improve for you both.

k

8colon8's picture
8colon8
Posts: 18
Joined: Jan 2019

Hi Kazenmax, thanks for sharing. Yes he would only look at my wife when addressing our concern. If I ask for clarification, his body language is like why are you asking me to repeat what was already mentioned. They are very compartmentalized. Not cancer related, not my problem. Thank you.

 

Diane_K's picture
Diane_K
Posts: 19
Joined: Jan 2019

Great news about your wife finishing chemo! 

I am a stage 4 colon cancer survivor which had metastasized to my liver and both my lungs.  They were able to surgically remove the tumors and I am now a little over two years NED.  I have scans scheduled for next month and am getting nervous but hoping for the best.  I'm following a life style plan by a MD who has been practicing integrated medicine for over 20 years, specifically for cancer patients.  He has a book called Life Over Cancer, by Dr. Keith Block.  In his book he outlines food, supplements, exercise, stress reduction in a very clear and concise way.  He believes that chemo and surgery are important in battling cancer but these other healthy choices can also help our bodies fight cancer and endure the surgeries and chemo. I juice cruciferous vegtables, green leafy vegetables and a small amount of carrots daily.   

Best wishes to you and your wife.

8colon8's picture
8colon8
Posts: 18
Joined: Jan 2019

Hi Diane, we got the book that you suggested by Dr. Keith Block. It is very interesting and informative. Thank you so much for referring it to us.  She is infact reading it and taking notes and I had to get her a hard copy because she did not like the kindle version. It is becoming our reference source going forward in putting together a plan. We know we had to do things differently but have no idea where to start. Thank you again. 

8colon8's picture
8colon8
Posts: 18
Joined: Jan 2019

Thank you Diane,

Her cancer has metastasized to two lymph nodes by her aorta around the abdomen. Initially, the oncologist didn't think any of the surgeon would operate on it because of the location and the size. At his turmor board, one surgeon would but only after my wife completes the chemo treatment. Since then, we had 3 PET scan and each time the activities around the site has shrunk in size. The head to hip scan did not pick up any other active activities. (fingers crossed) eliminating other possible spreading of the cancer cells.

With the end of her oxliplatin infusion 2 monday back and her oral xeloda just yesterday, we are set for another scan next month to be followed up with the surgeon in April. The surgeon feels that since she is responding positively to the chemo, that it would not be advisable to go fishing around the aorta.

Mind if I inquire what plan did your oncologist put you on for 2 years since your last chemo and operation? And thank s for suggesting the book from your doctor. I will  definately check it out.

Diane_K's picture
Diane_K
Posts: 19
Joined: Jan 2019

When I was diagnosed in 2015 my colon cancer had spread to my liver.  I had colon and liver surgery, and six months of chemo. (oxaliplatin and xeloda)

Three months after I ended chemo three nodules began to grow in my lungs and tested positive for cancer.  I had them surgically removed and went back on chemo for six more months. (irinotecan and 5FU)

I did not go on a maintenance chemo after that.  It's been a little over two years since my last surgery and one year and seven months since I ended chemo.

Before I had my lung surgeries I sought out a second opinion.  One doctor suggested an ongoing maintenance chemo after the surgery, and the other doctor suggested a more aggressive approach of full strength chemo for six more months.  I chose the more aggressive approach.

Each person has their own unique situation and one treatment plan doesn't fit all.  I wish the best for your wife and hope you are doing well too.

 

8colon8's picture
8colon8
Posts: 18
Joined: Jan 2019

Thank you Diane, my wife was diagnosed in April 2018, had her colon surgery in June, followed with 8 cycle of oxaliplatin with 14 days of xeloda in each cycle. the oncologist started her also on the aggressive approached then adjusting the dosage down when she experienced adverse side effects.

Thank you for sharing your journey. your experiences help us see that it is possible to go on without maintenance chemo, as long as we (the cancer team) are on top of tracking the cancer cell movement.

JanJan63's picture
JanJan63
Posts: 2088
Joined: Sep 2014

I hope your wife will be just fine. Carrot juice? Not sure about that one. I have an illeostomy so I have to be very careful with fruit and veggies. Everything must be soft and I have to eat very carefully or I'll get a blockage, which I've been in the hospital for a few times and seem to have finally figured out what not to eat.

Carrot juice would probably be good for her nutritionally but I can't see it preventing cancer. Really, what does? Being healthy is a help, it gets us through stuff easier. And recover faster. 

I drink a few thaings that are beneficial to my health but I don't count on any to actually help with the cancer. I drink V-8s, clamato juice, and when I want fruit that I can't just eat I put it in a smoothie. Strawberries, blueberries, peaches, mandarin orange slices, things like that. You mentioned being Chinese so I assume dairy is out? But you can make a smoothie with the fruit and some chopped up ice. Bananas are good, too, but can overpower the flavour.

For veggies I can't have anything raw so salad is out unless it's a couple of forkfuls. Veggies have to be cooked and cooked well. I have a mouthful of cooked veggies and then a mouthful of something that goes down well. If I eat a lot of veggies at once it can get blocked up. I love cooked spinach and spaghetti squash but both blocked me when I ate nothing but them. Oops. I like green beans, yellow beans, potatoes never bother me, but veggies that can't be cooked until soft are a no for me. I can eat them mixed with something if I'm careful. I stopped eating corn because it put me in the hospital. Basically I have to not eat anything that has a skin on it because it does not digest. I can have chili because the beans are very broken down but could not eat a meal of regular beans. Peas are an option but I have to chew them carefully.

I hope this is helpful! My way of eating has completely changed. I eat a lot of soup. I eat peaches from a can because they're softer. I can't eat oranges or grapefruits unless I cut them in half and scoop the meat out. The membranes have also put me in the hospital.

It's hard to have to think about every thing we eat. I make sure I chew efficiently but I've been eating a certain way for 50 years before this and I forget sometimes. I follow the low residue diet and also the diet for short bowel syndrome because after two surgeries I have that. Maybe look up the low residue diet. It really just tells you what to avoid.

Your poor wife, it's hard to change what you're used to. But it can be done!

Jan  

8colon8's picture
8colon8
Posts: 18
Joined: Jan 2019

Hi Jan, Thank you for your input on my thread especially when you have your struggle and was away from what I gather.  Yes, the whole eating regimen thing is taking a toll on her as well as on me. She does all the cooking before cancer and that is a tough act to pick up from. With her taste and smell being messed up. It is tough. It's hard to see her struggle every meal time, getting the food down because it doesn't taste or smell the same. She forced herself to eat because she knows that she had to maintain her weight for the chemo treatment. We are looking at changing to plant based diet. That is a whole new challenge in itself.

Anyway thanks again.

Butt
Posts: 85
Joined: May 2018

Hoooooray!

JanJan63's picture
JanJan63
Posts: 2088
Joined: Sep 2014

Aw, thanks Butt!

Jan

Butt
Posts: 85
Joined: May 2018

Carrot juice will not prevent cancer or cure it. The same way as beet or celery one. It is a part of good nutrition. Only cooked foods with cancer is BS. The patient may need temporary go for only cooked foods when in a high risk of infections based on a blood work. The immune system in young, overall healthy patients usually bounces back on its own and goes in cycles during the treatments. I refer to cancer patients. I hope it clarifies. I hope it clarifies. Butt.

8colon8's picture
8colon8
Posts: 18
Joined: Jan 2019

Hi Butt, thanks. We just wanted some feedback cos some friends claimed and articles also mentioned about carrot juice.  Guess a balance diet it is and avoid food that could feed the cancer cell.  

Diane_K's picture
Diane_K
Posts: 19
Joined: Jan 2019

I'm glad you're finding the book helpful.  There is so much information out there, it becomes difficult to know where to begin.  I hope your wife begins to feel like she can have some control over her illness.

Butt
Posts: 85
Joined: May 2018

I am not sure on foods that feed cancer cells. No sugar doesn’t feed cancer. There are too many people with some ideas that they grab from the internet. There also another thing on a celery juice. Those advises drive me nuts. There are so many poor people who dedicate there world too some herbal supplements i am referring to stage 4 cancer. Some other bazaar techniques. They usually realize that it is all  BS when they are on a death bed. It also sends a very wrong message to peopl who love them. There is no lack of ideas from well wishers . Some people are very much into this stuff. I mean good nutrition helps if she can do it but It is not a cure for cancer. 

SandiaBuddy's picture
SandiaBuddy
Posts: 539
Joined: Apr 2017

Butt, I think there is room for lots of different approaches.  If drinking carrot juice or celery juice makes someone feel better, what is the harm?  The placebo effect can be very powerful.  Plus, there is some evidence that various supplements and complementary techniques can be helpful, even if those matters were not covered in your medical school education.  Sometimes it is frustrating when doctors proclaim they know everything with certainty. Personally, I like the feeling that I am doing everything within my control to optimize my chances.

8colon8's picture
8colon8
Posts: 18
Joined: Jan 2019

Thank Butt, you are right, there are plenty of well intentioned people who offer what they are exposed to about cancer care.  Just like the chemotherapy, everyone reacts differently to same med.  That is why I am glad to have this board to bounce off the soundness of methods or ideas suggested from well wishers. And yes some of those supplements are not cheap.

 

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