My 35 year old wife got diagnosed with Stage IV colon cancer with peritoneal mets

[violet9583]

Hi all,

My beautiful wife got diagnosed with colon cancer last year. She got surgery done in August 2017 and diagnosed it as Stage II Adenocarcinoma. 3 Months later a CT scan was taken and noticed Peitoneal mets and upgraded it to Stage IV colon cancer. My life turned upside down when they told me that there is no cure for the cancer and whatever treatment they are doing is to prolong her life. I took her to so many doctors including MD Anderson and the answer is the same but their approaches are different.

1st doctor: Chemo for life with chemo holidays. Treatment will be stopped when she cant take the chemo or her body doesnt respond to Chemo
2nd doctor: Chemo for 3-6 months and if the tumor is responding to Chemo, HIPEC and chemo for 6 months. After that observation for every 3 months
3rd doctor (MD Anderson): Chemo for 3 months and if the tumor is not responding Clinical trial

I dont know whom to believe. My wife started with Chemo with FOLFOX and she is having severe nausea. We got one more CT scan last week and the doctor noticed a nodule in the upper lobe of lung. I am still waiting on what the diagnosis is for the lung nodule.

Every body is advicing to take one day at a time but my one day is like one decade. I am going to work but I am just physically present at work. I can't sleep, eat and I dont know what to suggest my wife.

Please advise me what to do in this situation:
1: Stop Chemo and enjoy life to the fullest and until she lives
2: Go through the Chemo with lot of symptoms and sacrifice the quality of life- My wife is not going outside, not meeting her friends and sometimes she is not letting my 5year old son come and touch her

Please Please Please help me

[Atoq]

Hi,
First of all I am really sorry for your wife, I cannot give advices because I have also just begun my journey here, but many on this forum were stage 4 and still enyoing life after several years. HIPEC sounds very interesting. What kind of trial were you offered to partecipate in?

Claudia

[stu]

Difficult days for sure . It is a terrible situation for you both .
My mum has been managing a stage 4 diagnosis for eight years , nearly nine . She is much older than your wife so some choices have been quality of life ones , like no post op chemo .
Her approach was to use chemo to achieve shrinkage and hopefully reduce the tumour load . Then use surgery wherever possible . Removing a small lung met through keyhole surgery was the easiest surgery to date .
She pursued windows of opportunity where possible . All stage 4 patients endure the reality of treatable but not curable however that can be very effective with treatment and we as a family have had many , many good days since her diagnosis.
It is very early days for you both and time helps considerably. I never thought back in 2009 my mum would still be here . Her quality of life has overall been very good .
Hope that helps some .
Stu

[CAGirl]

Oh dear. You poor, poor thing. We have all been there. I was diagnosed Stage 3C one year ago, but in three weeks, I will know if the lung nodule we're watching is indeed a CRC met or not.

First off, my vote is NOT Number 1, as she will get through the Folfox (we will help her with side effect management, if we can) and there are MANY people -- as Claudia mentioned -- on this board and long gone from the board but not life who are surviving Stage IV. Don't give up!

Second, I love a book called When Things Fall Apart, by Pema Chodron. It helped me not feel like I was drowning from the diagnosis.

Third, I encourage her to embrace and not push away your 5-year-old. Here is what I did with my then-3 and 6-year-olds:
(Reposting from response to another thread)
I did sound therapy and yoga, AND my husband and I preemptively started seeing a therapist who has experience with couples going through cancer and also parenting issues. That has helped a lot. She told me if my girls (3 and 6) could get through this, they will be that much stronger and ahead of their peers in terms of coping skills and being able to deal with emotions. We have been age-appropriately sharing stuff with them: they ask to see my pump bottle to see if it's empty the day of my disconnect; know to watch out for Mama's port; and we created a lovely collage of a "Healing Tree" with 12 empty branches. Each cycle, we add leaves and other magical stickers -- birds, butterflies, flowers.

I finished Chemo last September. Seems like a world away. My kids still bring up the pump (we saw someone with an oxygen tank at a cafe and my 4-year-old brought it up). They ask me questions like "how old will you be when I'm such-and-such" or "will you still be alive" etc. I tell them we are all going to die some day, and we don't know when that is. But that I plan and hope to be around for a long time. Also, that I -- with the help of my doctors -- are doing all we can to ensure the aforementioned.

If you wife can manage the chemo side effects, she will be more able to be "normal" and loving with your child. Especially on her "off" weeks.

Here's what I did: made sure to exercise -- even if just a 20 minute walk -- each day I felt able. Kept small snacks in my tummy ALWAYS. That helped with the nausea tremendously. Even if just nuts, Cheerios, crackers, etc. DRINK DRINK DRINK the day before chemo. 8 glasses of water at least. Also, I made sure to get IV fluids EVERY TIME upon disconnect. (The nausea was worse day after disconnect. Fluids help!) Also, I took a prophylactic Zofran night before (or morning of?) hookup, as well as 1/2 of an Ativan. I am NOT into drugs, so I wanted to get through without Ativan, but IT HELPED. I only did 1/2 a pill each night for the 3 (?) of chemo "on" days. Zofran every 8 hours or so. Like pain, nausea is best managed BEFORE it gets out of control.

That's all I can remember for now.

Best of luck -- and this forum is here for you!

[CAGirl]

Also, a book just came out called Everything Happens for a Reason and Other Lies I've Loved by a woman named Kate Bowler. She was 35 with a newborn son when she was diagnosed with Stage IV colon cancer. I referenced an opinion article she wrote for the NYT a couple of months back. Heard her on NPR. Very good interview! I read a few pages of the book, but may need to put aside for a little while (too close to home). Anyone else read it yet?
I think she has a good philosophy about living each day, scan-to-scan and enjoying her family, etc.

[peanut_8]

violet 9583

How devastating for you and your wife. I can only tell you what I'd do in your situation. Since I've been a member here at Colon Club for several years now, I've read about members with similar situations to your wife. Option #2 would be what I'd choose. Don't know how familiar you are with HIPEC, but it seems to be the only viable chance for a cure. Barring some luck with a clinical trial. Seems like it can be a tough surgery and recovery, but worth it IMO.

Cytoreductive surgery (CRS) and hyperthermic intraperitoneal chemotherapy (HIPEC) is a viable option for selected patients with peritoneal metastases (PM) from colorectal origin, resulting in long-term survival and even cure in some cases. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5501638/

Best Wishes,
peanut

[rp1954]

Our successful experience with what was generally hopeless in 2010: combine oral 5FU chemo with mild side effects with biologically rational molecular and immunological adjunct approaches - stop the spread, kill what you can. Maximize inhibition and kill with good quality of life. Be aggressive on surgeries, be aggressive on tolerable chemistries to become elgible for surgery. Do extra blood tests - closer to clinical trial batteries.

For US based, the available oral chemo is capecitabine (generic Xeloda) with celeoxib (Celebrex) and maybe cimetidine (CA199 level >19 or 20s?) and baby aspirin
Immunological adjuncts like megavitamin D3, astragalus, PSK, other mushroom extracts and active beta glucans, IV vitamin C
Anti-inflammatory and molecular adjuncts: curcumin, quercetin, resveratrol, silymarin, boswellia, EGCG, IV vitamin C, menaquinone-4 (MK4, the human transport form of K2), omega-3 fish oils, other flavonoids, vitamin B6, B100 with natural folate, DIM, coQ10, lipoic acid

The most active amounts are often higher than "naturopathic" recommendation levels or even Life Extensions, a good starting list. It's easy to achieve feeling better with naturopathic levels, but these may be suboptimal for cancer inhibition - we used a lot more per the original papers/doctors.
Avoid folic acid including FA fortified foods (use natural folates) to maximize 5FU with minimum toxicity
Lower carb diet with cruciferous veggies

You have to be your own advocate, especially for nonstandard chemo, tests and surgeries.

[Lee]

I am so sorry. My only advice other than HIPEC would be Immunotherapy. Ketruda has been FDA approved for colon cancer.

Here is a thread regarding Celine's journey. She went from months to live, to NED today. Maybe something to consider

viewtopic.php?f=1&t=49736

Good luck,

Lee

[ppanamared]

I am pretty much in the same boat as your wife but ive been a year and 3 months into oxi and iri chemo...only effects i had with either was hiccups and mild finger and foot neuro...md anderson fights any ideas for hipec for me and wants to make you goto a trial. Told me they dont like the ab scaring, yeah that really matters if im dead in a few months anyway. Still doing the iri trifecta but when it stops working i will go explore other places for hipec. I have a 1 year old that hangs all over me after work so dont feel that chemo will take her life away, you are so young that she might not even notice the chemo like me.

[Lee]

Here is a thread you might want to look over. 1st page and last page. "Terminology and Abbreviations"

viewtopic.php?f=1&t=5366

Lee

[Achilles Torn]

all I can share is my story so far:

I was diagnosed Stage IV, incurable and inoperable in December of 2016. I have three boys who were 7, 5, and 3 when I was diagnosed and it was so horrible to think what this disease would take from them (and my wife and I) that I could barely stand it. I thought my life was over from that day. Christmas 2016 was a fog of sadness and fear. I started FolFox +Avastin Chemo in Jan of 2017 and the first little while was really rough. I was afraid to be around my kids because of the poison in my body and in my brain. I was sick from chemo and scared all the time....

But then things got better...I went to counselling, my wife took me to yoga, I found this support forum full of great advice, I found support at colontown on facebook (highly recommend). I came out of the fog and it seemed I could deal with everything, including the Chemo, a little better than before. I researched options, clinical trials, treatments and learned all I could. Fast forward 14 months from diagnosis and I've finished reading my boys the Lord of the Rings triology and am two books into Harry Potter, we went on fantastic summer holidays, had 2 years of ski vacations where I saw them all learn to ski, and Christmas 2017 was great. I am on Chemo for life but the cancer is currently not active on my scans. It will probably return and very likely kill me someday....but not today. I can tell you my life didn't end in December 2016 like I thought it would and my boys are now 9-7-4.

What you are going through is horrible but there is every chance it will get better.

My only advice: Get genetic testing ASAP to determine what mutations drive the cancer, determine MSI/MSS status, research all treatment options and be Proactive. You are near the beginning of this and that means there are many possibilities that are still open, Chemo could work, targeted therapy could work, HIPEC could work, Immunotherapy could work, clinical trials could work...... There are people who started with a worse diagnosis than your wife who have lived and are living/thriving today for years. There is every reason to hope that your wife could be amongst them.

I hope that helps a little
AT

[exaussie]

Hello
The final decision is hers for sure BUT please make sure her drs, oncologists know her misery, there are things they can do to make tit more tolerable. It will not be easy but tolerable. Peace and love

[Canada777]

Hi - I am the spouse as well and my husband has appendix cancer with peritoneal mets. He was 30 when he did FOLFOX ( 6 months -12 treatments) and then hipec - and we had to push to get hipec ( his pci was 20). I recommend hipec if it's available. It's a big surgery but he coped with it reasonably well. I'm sure his shear determination helped too and being young and otherwise healthy. He had 9 months without detectable cancer or treatment after that surgery. Sometimes hipec is curative ( studies say around 30% I believe). They do have very strict criteria to get the surgery so if you may want that option get in contact with the surgeon asap to see if the new lung module changes anything.

Feel free to send me a private message if you want more info about hipec or his experience.

I know it's tough being the spouse to the person with cancer but it does get easier as time goes on. Try to book trips or do small things you both enjoy to take your mind off things when you can. I've found yoga and even a walk with a friend to be helpful for my self care. You are better able to help your spouse if you take some time for yourself too.

[violet9583]

Thank you all for your support and advices

[AppleTree]

I am sorry to hear your story...but keep pushing forward!

I just finished #9 of 12 Folfox treatments. They put the Zolfran in to the IV to help with naseua. Plus they give me 1 ativan as soon as my labs come in saying chemo is a go for the day. I have ativan and Zolfran at home too.

What has helped me the most, I think, is fluids with Zolfran in the IV on the day of disconnect AND the following 3 days. Those days, I feel my worst and it is a big effort to get to the hospital for fluids (I am very lucky to have someone who drives me to all my appointments). But the fluids and Zolfran in the IVs lures me out of bed. Seems like those 3 days I survive on Gatoraide and Saltine crackers, chicken rice soup, and it passes in a haze. But, then the pendulum starts to swing the other way.

One more thing. My body has stopped producing enough platlets for the chemo every 2 weeks. I now get it every 3 weeks. And oncologist did reduce the dose a bit. I feel that extra 3rd week really helps me get my strength back, I eat way more that week and generally feel mostly "normal".

We are all here for you guys.