What to expect moving forward? Dad dx with stage 4 Colon Cancer...starting chemo

julita128 · January 2013

Hello again folks,

I dont know what i would have done without this site. As many of you have given me information that has helped us process Dad's dx. Just to give you the story so far, Dad went to the ER after a few days of stomach pain and unable to go to the bathroom. Drs dx him with Colon Cancer stage 4 after running tests that found an 8cm tumor in the colon. During a colonoscopy, they inserted a Stent. Initial biopsy from this procedure was inconclusive although CEA was in 500 range. So, a few days later they did a Liver biopsy with a needle. Dad has been home for 1.5 weeks now, thank God, and seems better than when he was in the hospital and before. He however, is losing weight. His weight in the hospital was 152 and he is now 144. Dad's regular weight was 165-170.

He is scheduled to have a chemo port placed in on tuesday and I would imagine will start chemo shortly there after. I believe the oncologist said Avastin. This has no doubt been a hard experience and I am his only child. So, I am taking this on as not only his daughter but health care proxy and I want to get him the best care possible. I am no familiar with cancer so I am thankful to the website for giving me such knowledge.

In the meantime I have been trying to work on his Medicare which is incredibly frustrating but I think I have it covered now...

Stats:

Dad is 65 years old. Was preparing to retire at the end of the month. He was in a physically demanding and stressful job.

Pre-existing conditions: Dad has high blood pressure. He takes 10mg of Amladopine daily.

Here are my questions:

Dad says he feels pinches in his side (where they did the liver biopsy)...any idea what this could be? keep in mind it has been a week and a half since then.

Occassionally says his skin is itchy near the liver biopsy site.

I made myself in charge of his diet but I am no chef by any means so I am cooking what is generally healthy. The other night I made turkey tacos but i think the lime juice in the pico de gallo was acidic and bothered his stomach. He told me it was burning the next day.

What is the chemo port process like? I hear it is an hr long outpatient procedure, what can i expect to observe from him after?

What can we expect from the Chemo process?

How can i help Dad gain some weight without shocking his digestive system? I am concerned about his weight and want to cater to his high blood pressure. He hasn't been eating big portions which i expected but any recommendations for good calories?

I am also debating a second opinion. Oncologist said he doesnt feel surgery will be beneficial because is spread to liver and lungs...thoughts on this?

Right now he is being treated by the hospital. We live in NYC and he is being treated at Beth Israel. I am debating getting his care at Sloan because it is a cancer hospital, but i have heard some experiences of treating patients like research...and quality of life etc?

For the family members...What can I expect to feel myself? I find myself not wanting to leave the house but i have to for work. And I dont want to be anywhere else but home but i know i have to take breaks sometimes I just dont want to at the moment. I want to be there with him as much as possible and help him process this information,

GOD BLESS YOU ALL FOR YOUR RESPONSES AND PLEASE FEEL FREE TO MESSAGE ME!

Julia

Lovekitties · January 2013

Dear Julia

You mention that you think you have his Medicare in place. Did you also get him a supplemental insurance? If not you need to. I got mine thru AARP but you can get it elsewhere as well. There are a number of plans which vary in what they cover. I got Plan F which is the most comprehensive, covers deductibles and copays and what Medicare doesn't on covered expenses. If you do this right away there is no issues with any pre-existing condition. Having this additional coverage helps relieve some of the financial burden and keeping up with all the medical bills.

Weight loss is one of those things which comes along with the disease. My sister's onc recommended Boost, Ensure or the like to help keep up the nutrition and calorie count. He even said to make a milk shake out of it. It is easy on the stomach for most. Make sure it is cold for best taste. Since you work, it might be good to make up small portions of things he likes and either freeze them or have in fridge so it is easy to heat up when you aren't there. As he begins chemo, don't be surprised if his taste changes...things he once liked may no longer taste good. You many have to just try out different things to find what tastes good to him.

A second opinion is good, but most surgeons won't consider surgery with active mets elsewhere unless the original tumor is causing a total blockage. If they can get the mets under control, surgery may be possible in the future. There are a number of long term stage 4 survivors on here who go to Sloan and have had only good things to say about the care they have received.

I had total hysterectomy, rectum and anus removed for a rectal tumor 3 years ago this March. Last October my sister was diagnosed with stage 4 uterine cancer. Since then I have been helping her with her treatment, finances and care, so I have been on both sides of this journey. Being the caregiver is by far the hardest. Making sure she follows the doctors advice about eating, calling the doc about issues, etc. has been challenging. It is also difficult to balance the positive attitude with the feelings of helplessness. The best you can do, you are doing. Seeking out information is key. Attending treatments and appointments will be difficult for you since you work, but he will need someone to go with him to make sure to document what is said and done. Coming here to vent or seek help or seek emotional support will help you as you help him.

Wishing you both the best outcome.

Marie who loves kitties

abrub · January 2013

Some answers

Re his liver biopsy: it's not surprising that he should feel some pinching - it is an invasive procedure. Re the itching: a sensitivity/allergy to adhesives is not uncommon. Any kind of tape/bandaid lives me in an itching frenzy that can last over a week after the tape has been removed. However, it's always worth having it looked at.

Port placement - minor outpatient procedure. He'll use pain meds for a day or so after, might feel like he's been punched where the port is. Depending on how they do it, he may be able to shower the same day, or may have to wait a couple of days. They can start chemo immediately following the port placement.

Beth Israel is a top medical center. However, MSK just does cancer, so all their specialists are specialists within cancer areas. It might be worth a second opinion. Understand that they might say the same as BI.

Remember to take care of yourself. You are of no use to your father if you don't take care of yourself.

Alice

Varmint5 · January 2013

High cal foods

Hi Julia,

When my daughter was diagnosed she was losing weight rapidly and we had to reverse that and pump up her protein. I used unflavored whey protein powder and mixed it into many things. I also made double-strength milk to use anywhere milk was called for and made puddings, soups, etc. She especially loved plain old Campbell's tomato soup which I made with the double strength milk or the recipe below. She could not stand the taste of Boost or Ensure, so we used Carnation Instant Breakfast made with double strength milk, and sometimes a scoop of protein powder, vanilla in this case. It is 100% nutrition, like Boost and Ensure, according to the dietician at the hospital. To make double strength milk, mix 1 C. powdered milk with 1 qt. whole milk in the blender and store it in the fridge to use in place of milk. I also made vanilla pudding with the fortified milk and cut up some banana in it. She liked that. Baked potato with lots of butter and sour cream. Small, frequent feedings. No big heavy meals unless he is up for it. On chemo, it is going to be the time to get protein and calories into him any way you can - at least that's the way it was for us, especially with him losing weight.

He needs protein. I was in search of things high in protein and calories and found several that my daughter liked. Your dad probably won't be interested in complicated meals, so I would just do the basics. I am just going to copy and paste here a document I made during that time. Maybe it will help you. I tried for 100 grams of protein, 2000 calories daily. When you see "g" in this list, this is "grams" of protein. "cal" is calories. Here it is - maybe you can copy and paste it and print it out. I forgot all about this. Maybe somebody else can use it, too. Good luck. -- Sandy

1 C. dry roasted peanuts 30g

1 C. edamame 17g

4 oz tuna 28g

Gatorade recover "3" 16g

4 oz hamburger 28g

beef 7g/oz

4 oz cooked chicken 35g

6 oz tuna 40g

cottage cheese 1/2c 15g

large egg 6g

Can white meat chicken 4.5oz 150 cal/30g

Recipes:

Cream of chicken soup 5 g 300cal

1 can swanson’s 4.5 oz white meat chicken, undrained 30 g 150 cal

1/2c whipping cream 360cal

1/2c half n half 4 g 160 cal

2T butter 200cal

1 scoop unflavored protein powder 110 cal/21g protein

Total 60g protein, 1280cal in 3 cups

20g protein, 425cal in 1 cup

Fortified milk

Drink or use in cooking to add protein

1 quart whole or low-fat milk and 1 cup powdered non-fat dry milk

Blend and chill at least 6 hours. Can also be made with buttermilk or dry buttermilk.

(211 calories and 14 grams of protein per cup)

Sherbet shake

1 cup sherbet 220cal 0g
1 cup milk 120cal 8g
1 envelope instant brkfst vanilla 130cal 5g

(470 calories and 13 grams of protein per serving)

Sherbet shake with protein powder

1 cup sherbet 220cal 0g
1 cup milk 120cal 8g
1 scoop protein powder vanilla 125cal 24g

(465 calories and 32 grams of protein per serving)

Cottage cheese smoothie

A thick, protein-packed drink

⅓ cup cottage cheese
½ cup vanilla ice cream
¼ cup prepared fruit flavored gelatin

(310 calories and 11 grams of protein per serving)

Classic instant breakfast milkshake

A protein-packed favorite

½ cup fortified milk
envelope instant breakfast mix
1 cup vanilla ice cream (add flavorings or different flavor ice creams for variety)

(474 calories and 20 grams of protein per serving)

Peach yogurt frost

A frosty, tangy drink

1 envelope vanilla instant breakfast mix
1 cup whole milk
½ cup peach yogurt

(400 calories and 19 grams of protein per serving)

Chocolate cocoa drink

A cool, creamy chocolate drink

1¼ cup vanilla ice cream
½ cup whole milk
1 package of hot chocolate mix
2 teaspoons sugar

(600 calories and 24 grams of protein per serving)

Peanut Butter smoothie

1 cup fortified milk

2 scoops protein powder

1 tablespoon peanut butter

(560 calories and 65 grams of protein per serving)

Tomato Soup

1 can Campbell’s tomato soup 225cal, 5g protein

5 oz half n half 200cal, 5g protein

5 oz whipping cream 450cal, 0 protein

1 scoop protein powder 110cal, 21g protein

(makes 20 oz; 490 calories and 15 grams of protein per 10oz serving)

Yogurt Smoothie

6 oz milk 90 cal. 6g protein

1 scoop protein powder 125 cal. 24g protein

6 oz AE yogurt 200 cal. 8g protein

(415 calories and 38 grams of protein per serving)

Instant Breakfast with protein powder

1 C milk 120cal 8g

1 serving instant breakfast 130cal 5g

1 scoop vanilla protein powder 125cal 24g

375 calories, 37g protein

Chicken with gravy

1 sm can chicken 150cal 30g

¼ C chicken gravy (Heinz, in a jar)

1 scoop GNC Pro Performance whey powder 110cal 21g

290 calories, 51g protein

tootsie1 · January 2013

Hey

He's blessed to have you there with him.

*hugs*

Gail

annalexandria · January 2013

The number one thing...

is to take care of yourself, as hard as that may be! As they say, life with cancer is a "marathon, not a sprint", so you have to conserve your energy for the long haul. Take breaks when you can, get outside help (from extended family, friends, neighbors, anyone who is around...the answer to all offers of help is YES!), allow yourself to operate in "good enough" mode at times. As Marie said, caregiving may be even harder than being the patient, so it's very important that you not wear yourself out completely in the first few months. If you are reasonably well rested and cared for, you can provide better care for your dad. And it sounds like you are doing a great job of that, and being a very good daughter...I'm sure your dad is grateful! AA

hippiechicks · January 2013

Hi Julia,
First of all I am

Hi Julia,

First of all I am sorry to hear you have to be going through this with your Dad. It is not fun and you will most likely feel very overwhelmed and wish there was more you could do for him. I was a care taker 10 years ago. Never thought what I was doing was enough...I took a leave of absence from my job. I was lucky enough to be able to do so at the time. I had the same feelings you have now with the struggle between work and caring for your Dad. Now, I am on the other side and watch my husband going through this again ... and know how hard it is. He looks worse than me!! Drained and worried. Trying to do it all. But, I can tell you on this side the best thing you can do for your Dad is just be with him. Take his hand, and laugh a little over some good memories, read him a book, listen to one on tape with him, rent a good movie or better yet ... start watching a good series with him...it will be something you both will look forward to and is not physically demanding.

Port placement was less than I expected...I was awake and talking the entire time. Went home soon after.

Chemo is not fun...I did not have to be admitted into the hospital but did struggle with some dehydration and needed fluids several times. I had a more difficult time than many on 5FU/oxali. Fatigue was really bad, low blood counts, lots if nerve things going on, feeling really sick for 5 days...then bounced right back until the next round. Made it through all 12 but wanted to throw in the towel between 7-9. His oncologist will be able to adjust the amount of drugs if they get to be too much for him. I did have some side effets that lingered but have gotten better over time. I still have some neuropathy, joint aches, chemo brain and vision changes. My hair broke and got very thin...but did not lose it all.

Ensures are a great way to get all the nutrition needed. I drink those when I really am not getting enough nutrition and definately for several weeks after surgery and throughout much of chomo. Good idea to check with his surgeon or oncologist to see if he should be having the one for wieght gain or extra protein. Instant carnation breakfast drinks are good warm or cold and are a nice choice and easier on the pocketbook. I drank a lot of green tea. It was warm and mild on my belly. Eggs always worked well for me with toast, sometimes cinnamon and sugar toast did the trick, and mashed potatoes (instant) on the "bad days" for some reason always hit the spot. I found out half way through that I always needed to have crackers by my side ... when I was nauseous it was the only thing that worked. Also, Lorna Doone short bread cookies where good to munch on but bland enough to eat. I had to take nexium every day as well. I made sure I ate well as soon as my appetite returned on day 5 or so after treatments and was able to gain weight all throughout my 6 months of treatments. I definately found I had to have Aloxi prior to treatments to help with nausea and I also had to have the neulasta shots every other week.

If you feel like you need a second opinion...go get one! Knowledge is power and trust me when I tell you not everyone has the same opinions on these complicated situations. Research, research, research .... find a specialist for surgeries and doctors willing to go the extra mile for your Dad. Ultimately the oncologists, surgeons, PCP's and other professionals will have to be on the same page for his care. I would definately speak to Sloan if you can....you will know who is right for your Dad's care when you meet and speak. I have recently just recieved my 5th opinion...and this one matched my first and my gut...so that is what I will be doing. (although it was not the most pleasant)

I truly wish you all the best with your Dad. Sending positive energy his way. Know there is support for you and your Dad as his journey begins.

renw · February 2013

I was diagnosed with stage 4

I was diagnosed with stage 4 3 months ago. I was rapidly loosing weight, at the rate of 1kg every 2-3 days. in total i lost over 20% of my body weight, which when not being overweight was a lot about 16kg. I was recommended to simply eat more of everything, more carbs etc by the hospital dietician. I did not agree with this point of view as I am strong believer of eliminating as much sugar and carbs from my diet. I did some research on cachexia, and instead of simply eating more I decided to hit the gym 5x a week. It may seem counter productive to start so much while losng weight, but it really helped. I stopped losing weight, regained a lot of the muscle tissue I had lost and even managed to put on 5 kg.

I do resistance training, 3x10 repetitions on every muscle group during the week. The weight should be such so that you fail to do 10 reps on the last set.

Ren

renw · February 2013

Ports are great. Much better

Ports are great. Much better than having to deal with constant needle jabs in various veins. The procedure is quite simple and painless. The port site is a little sore for a week or so while it heals.

Chemo is another matter. Side effects will be different depending on the drugs used. with folfox, the main issues i had was was with the oxaliplatin neuropathy. Initially it starts with anything cold. Holding an ice cube can feel like being cut with razor blades. If u avoid anything cold its ok. the side effects get worse with each cycle. few cycles later I found it hard to walk on cold tiles. few cycles after that even pressure would cause the neuropahy for me not just cold. If you get avastin, the side effects there for me were an increase in blood pressure, nose bleeds, and painful bleeding fishures in the rectum. Then there is nausea to deal with. The two things that really help my nausea is exercise and hot baths. I have lots of anti nausea meds, but I dont like taking them as i figure my liver is bad enough already and the steroids make it hard to sleep. folfiri on the other hand i found much easier than folfox. Virtually no side effects other than change in taste. Nausea was a little worse than folfox however I found.

Best advice I can give, take matters into your hands, do lots of reasearch and don't take the advice of oncologists as the be all and end all. There are treatments and options that oncologists will not even tell you about. example if u push for a pik3ca test done, aspirin will be helpful. if you have her2 test done, you can use herceptin off label etc. etc. Also look at cutting edge treatments like laser ablation which is available at some clinics in the US.

Ren