New here: Wife with Stage 4 colon cancer

[BernieRN66]

I am new here; my wife 48 yrs young has stage IV colon cancer, diagnosed on March 19th. She had the primary tumor removed in March and recently (last week) had her first chemo treatment (FOLFOX with Avastin). She has mets to her liver and left lower lung. The liver tumors are inoperable.
I am a registered nurse but I will be the first to admit I have much to learn about this, I don't work with cancer patients in my job. After reading the blogs for a few weeks I thought I'd participate and say hello.
Ana and I have 5 sons at home, aged 17 to 10 years old, and and 2 grown kids living on their own, one with our 2 grandchildren. Ana has a lot to live for!
I am sometimes overwhelmed by all the changes that this illness has caused, but we survive. Happy to join your online community.

[Ceebo]

So sorry you have to come to this site, but so glad you are here. I too am an RN, with over 35 years of experience, but I have had to learn a lot since my husband was diagnosed in 2014. There is a lot of information to process but your medical background will help a lot. Be sure to keep good notes from dr's visits, get copies of all reports, and don't be afraid to ask questions. It also is not unusual to get a 2nd opinion.

You will find that this forum is an excellent resource!

[Sleen]

I'm glad you found us, Bernie. Hopefully the people here, along with your large family will be a good source of support and encouragement for you both. My husband and I have five at home, too (see signature).

FOLFOX seems to be pretty effective for liver mets. I agree--Ana does have a lot to live for, and a positive outlook will help a great deal with tolerating the treatments. I hope you're spoiling her in every way possible

Celine

[GrouseMan]

Sorry you have to be here as well. You might look to add some additional supplements to the mix. You will find quite a few people talking about adding Celebrex (Adapt protocol) which is a COX2 inhibitor or at least Aspirin to the mix. My wife I have take Cimetidine (Tagamet 800 mg a day though you can go higher). There are threads about this on this in the forum. Most oncologists don't really know much about the benefits of either of these two add ons. My wife's oncologist is skeptical that Cimetidine does anything, but he is OK with her taking it as he see's no down side either. Its very safe to use. My wife has been on maintenance therapy now for a year. Once every three weeks 5-FU, Leucovorin, and Avastin. She has been stable and doing well, though they can still see the calcified mets on her liver. The ones on her spleen they can no longer see, and what they though were mets on her lungs, they are not sure about because they have remained small, and unchanged going on 22 months now. I think the Cimetidine helps. But I also read all the papers, and I use to be an anti-cancer researcher working on new anti-cancer drugs. I am not influenced by snake oil salesmen....

Regards,

GrouseMan

[BernieRN66]

Thank you all for the welcome and encouragement. Yes, I am doing my best to spoil my wife.
I did start a binder to collect all her medical records and to take notes.
My biggest concern with her right now is maintaining her weight. After her first chemo (last week) she says her throat hurts and she has lost a few pounds already.
(from the time when her symptoms started in December to the time she started chemo last week she had already lost ~50 lbs.)

She started using a mixture (magic mouthwash?) to help her with her throat / mouth pain. Hopefully she is able to eat/ drink and keep her strength up.

I will look into the Celebrex and Cimetidine. Thank you for the advice.

[BernieRN66]

My wife takes Protonix (daily) and Zantac (occasionally) for a stomach ulcer that was found shortly before her colon cancer was found.
Are the properties in pantoprazole and ranitidine not helpful in conjunction with her chemo in the way cimetidine is?

[canadiandaughter]

Welcome to the board! It sounds like her tumors are fairly similar to my dads, although he has not had any surgery. He has had success so far with folfiri on all of his tumors. I agree to try the tagamet, like mentioned already, it cannot hurt. Our oncologist knows nothing about it, but is willing to write the prescriptions for us. I hope the mouthwash helps your wife. Dad has been very fortunate thus far with that. He has actually gained weight as mom isnt being as strict with his diet for diabetes. He eats whatever he thinks sounds good, so often it is something very strong flavored like onion rings!! One thing that has been nice for my dad is that my daughter is a RN so she has been able to go to his house to do his disconnects from chemo, saving him a trip to the city. That might be helpful to your wife as well if folfox is one that has a take home bottle for 48 hours. They send a kit with him so she can do it for him.

[ANDRETEXAS]

I lost quite a bit of weight during chemo....and I did not want to eat.....couldn't eat anything cold (ice cream)...hardly could stand the taste of eating anything as most all food tasted like mud-covered styrofoam. Did like soup, chocolate and nuts. Pellegrino was a staple of mine. Couldn't stand the taste of regular water. Chocolate and nuts can help in keeping weight on.....unless you're one of those people who never gain no matter what you eat. I hate those people !

[BernieRN66]

yes, I should be able to take the pump off of her medport after the 46 hours. I'll ask about that.

Ana has an ulcer and diabetes, but hey... I just want her to eat... if she can tolerate it, I think she should eat.
It's best to avoid sugars.
She does well with her smoothies. She puts kale, spinach, melon, banana, almond milk and yogurt. It's not bad, I tasted it. Her blood sugar has been acceptable.
She actually is swallowing a bit better today, hopefully she starts eating more.

[peanut_8]

My wife takes Protonix (daily) and Zantac (occasionally) for a stomach ulcer that was found shortly before her colon cancer was found.
Are the properties in pantoprazole and ranitidine not helpful in conjunction with her chemo in the way cimetidine is?

Hi Bernie, Sorry that you have had to find us here at the Colon Club, butt you will find that we can be very knowledgable and supportive.

Just wanted to clarify that the way cimetidine works to aid survival is unique, and other products you mentioned have no effect on cancer survival.

I seem to be addicted to posting links today, so here is the first one I came upon when I checked:

Cimetidine increases survival of colorectal cancer patients with high levels of sialyl Lewis-X and sialyl Lewis-A epitope expression on tumour cells

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2375187/

Good luck, peanut

[canadiandaughter]

My dads sugar levels go up from around 19 to 22 for the days he is on chemo and about a day or two after. I believe the drugs he gets for nausea are partly to blame for the increase being the one has a steroid in it. The first time it happened we were very alarmed, but my daughter googled the drugs he was on and figured things out for us. We also mentioned it to his doctors but it seems to be the norm.

[GrouseMan]

yes, I should be able to take the pump off of her medport after the 46 hours. I'll ask about that.

Ana has an ulcer and diabetes, but hey... I just want her to eat... if she can tolerate it, I think she should eat.
It's best to avoid sugars.
She does well with her smoothies. She puts kale, spinach, melon, banana, almond milk and yogurt. It's not bad, I tasted it. Her blood sugar has been acceptable.
She actually is swallowing a bit better today, hopefully she starts eating more.

Yes - Its important to get good nutrition and manage nausea. My wife didn't have much problem with nausea as she was proactive with the meds, and she also found that if she ate while in the chair she seemed to be much less nauseous. She practically has none at all now. I think Brown Bagger has found that Ginger helps him with nausea, and I have heard people also say that Pepermint tea helps them.

As Peanut indicated - The only drug in the proton pump anti-acid class of drugs that have an effect against cancer is cimetidine. Its the only one, and acts through another mechanism unrelated to its antacid effect. As a medicinal chemist it is often very hard to find any molecule that doesn't have other effects on cells unrelated to the target. So its not unusual. Give it a try I say - perhaps it will work well for both her stomach ulcer and cancer treatment. Sounds like h-pylori is taking advantage of her stomach acid. see http://en.wikipedia.org/wiki/Helicobacter_pylori. Most stomach ulcers are caused by this.

Regards,

GrouseMan

[wwroam]

Bernie

I'm still learning about Stage IV but my SO has just completed Cycle 2 of Folfox + Avastin.
The second cycle has been much easier than the 1st. You'll learn as you go.

Canadiandaughter

I'm rather alarmed at the high bg levels of your father. I'm assuming that he is T2.
From my observations on my diabetes forum, it appears common practice to go straight to insulin for the duration.
My SO only gets dexmethasone on day 1. Reduced dex may help him get control back.She has Emend as a premed and Kyril for 5 days.

[BernieRN66]

Okay, I bought the cimetidine and she is taking it now. Thanks for the article link. I printed it and will show it to her oncologist if he cares to look at it.

I just happened to buy Ginger Tea for her yesterday coincidentally, so we will try that.
Ana has been tested for H. Pylori and it was negative.

With the help of the medicine they gave her for her mouth and throat she says the pain is less there, but she gets a hiccup whenever she swallows anything. Just one hiccup per swallow. It's strange.
Maybe the Zofran is to blame for this according to one website I read; I will ask her oncologist about it. She says the hiccups hurt her esophagus and I think it is to blame for her not eating now that her mouth and throat is feeling better.
I hope you are right that she will do better / feel better on subsequent chemo treatments.

Thank you all for your help!

[jillbugs4110]

Is Cemitide over the counter?

Well Hi Im the wife not the care taker and I know what you two are going through I went in with a stomach ache came out with stage 4 incurable cancer this was a blow to the head. So what I can say is that was last June and I have really done great on treatment and there are some straight up brilliant people on this site. Read, Learn tell your wife to be her own advocate be careful when a doctor says to you we dont do that unless its easy. I have seen a lot of people on here not taking NO for the answer they are the people I talk to. BUT it is a journey and everyone appears so different please stay off of Google random cancer sites, stay away from statistics. You seem like an extremely loving husband so I would just guide her make her feel safe which it appears by your responses. We only have today. Look at Nepal our life is no more important than their lives. STAY IN TODAY. Deal with cancer on cancer days only dont let it suck up your life it has taken me almost a year to get to this point a precious year! I have had a hard time mentally staying in the moment but when I do life is so sweet. Love each other and be patient with each other it can get very stressful on many levels I just try to keep in mind how lucky I am to have another moment with my family.

Read, Learn write down questions ask if you are not happy with the answer seek another opinion you will get tired but this will be her full time job. I also do not know your living situation but if she worked and cannot during treatment file for a compasionate care claim through disability immediately so they push it forward and she can have time to not feel a ton of stress just take care of herself.

I am so sorry your here but if you have to be you are in the right place. People are helpful here and SMART, not so much me, Im from the West Coast hahahahaha just kidding....Westies are smart too.

CANCER SUCKS