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husband is now a chemo for lifer

betula's picture
betula
Posts: 83
Joined: Mar 2017

At 47 my husband was diagnosed with rectal cancer in Dec 2016, T3N1Mo.  He had the standard radiation and chemo, then surgery which resulted in a colostomy because his tumor was so low and then had Folfox.  He did pretty well with that and his side effects, expect for the neuropathy, were nearly gone before the next treatment. 

He was doing great, felt fine and looked great.  Had regular follow up ct scan in June which lead to a pet scan and lung biospy.  He has a few mets to his right lung and cancer at his original location. Also has the KRAS mutation which I was aware of and am now trying to learn more about.  This has all been a complete shock to us, obviously. 

He starts Folfiri on the 23rd.  I am hoping that since he did as well as one can on Folfox that he will be okay on this as well but I know everyone reacts differenty.  I have searched Folfiri on the boards so have gotten an idea of what to potentially expect.  Any feedback on experiences would still be welcomed. 

I continue to vascilate between planning his funeral and knowing that he has more time.  When we were at the last appointment with the oncologist, he sounds positive by saying that this is a progressive time in colorectal cancer treatment and that there will be many options ahead and they will get him involved in any clinical trials that he may be eligble for.  At our appointment the onc said the person in the other room has been on chemo for 1 1/2 years so I know that there likely will be time. 

Before we were done at the appointment my husband had to leave for an appointment with palative care and an awesome nurse spent time with me while waiting to schedule all the next appointments.  Her husband had stage 4 pancreatic cancer and he lived for 1 1/2 yrs after diagnosis and their daughter was 17 at this time.  This nurse was in business at the time of her husbands diagnosis and went back to school to become a nurse so she could work with cancer patients and even worked for a time with her late husbands doctor.  I have found that there are some freaking amazing people that you meet through this journey!

We want to continue to live as normally as we can until we cannot anymore.  Not just for us but for our kids.  We have many friends/family who keep calling offering help, etc but that does not help us to feel like we have time.  I know they are so well meaning but wish people would sometimes back off until we know what we need and let us continue as normal until we know how he does with this chemo.  I am not trying to live in la-la land about his prognosis but I just want to try and live as normal as possible until we cannot any more. 

It is very reassuring to know that many of you have continued for years with different treatments.  You amaze me and I bow down to you all!!  

I realize that this post has sort of been diarrhea of my thoughts coming out so I apologize.  I will be going to a support group so hopefully I can get my thoughts out there and not subject you all to themSmile

Thank you

plsletitrain
Posts: 253
Joined: Jul 2017

That has always been my motto so keep fighting!  I know we have to be realistic but you just can't tell.  I believe in miracles.  Re: people.  I totally understand you.  I remember when after I had the colectomy, someone who was a faithful went to the house and told me to confess and offered if they can visit me everyday for a pray over.  I was like, uhm...I know they meant well but I just don't like people treating me like I'm dead.  I pray on my own, I talk to God silently, and I would want to have the most number of prayer warriors but to tell me to go confess and for them to pray over me sounds like I'm leaving and not coming back.  I also know of someone whose friends kept visiting her at home while she was on chemo and they were all crying.  I was like, hey, give her the time to rest, letting her cry gives her stress and stress is friend's cancer.  Besides, why cry when she's still got the fight? But I didn't say it.  I know her friends meant well but please.  There are times when I just wish people wouldn't think that being diagnosed with cancer automatically means you're dying.

Annabelle41415's picture
Annabelle41415
Posts: 6316
Joined: Feb 2009

There is always hope.  Take the support and care you need from all around you and advice from your doctors.  It is good to be as "normal" as he can be.  I've only been on Folfox so I'm not able to help you with the other drug but others will be able to.  There might be some days not as good as others, but do what you, as a family can.  It's a terrible disease but they are making improvements daily.  You are a good caregiver trying to get answers and coming on these boards.  Wishing you and your family the best.

Kim

Twinzma
Posts: 220
Joined: Jan 2018

From one wife to another whose husband has colon cancer: What the heck is normal? We were blessed to find our soulmates, the fathers of our children. We knew we meant for each other and couldn't wait being proposed to. The day comes, we took our vows in sickness and in health. Yeah but that won't happen, then it does. In three words our lives come crashing down " It is cancer". That is the most shocking terrifying moment of your life. When we were little girls we envisioned growing old togther not being stuck in some other cruel universe. We go through all the stages of grief though our husbands are fighting for their lives. Having once been able to read his every thought, we find ourselves lost no longer able to figure out what is going on in their minds.

Ahh the friends and family come and insist on helping, the phone that used to be silent is now a siren of utter guilt. Guilt on their part that prior to they were too busy. It's enough to drive a Saint Mad. But we are not saints, we sometimes consider bargaining with the devil to spare our spouse and to let it be us. Leave us be people he is still fighting, we have this for now. We are mothers and wives, we are strong we can handle it. Yet we can't sleep. We see the toxic posions flowing through their veins and we are helpless. As every drop flows our thoughts race harder and harder: Is it working, Is he going to pull the needle out and say "enough" and of course the haunting question is this treatment going to kill him?

What is normal? I do not remember. Was there ever a normal between jobs and kids and life? Our husbands have cancer, this is no our new normal and it SUCKS. We are supposed to be empowered, HA did womens lib mess that one up. Empowered my behind! I have regressed to helpless little girl whose dream has turned nightmare. There is nothing we can do, no control with this horrible disease. All we can do is hold his hand, listen when he wants to talk and hold our faith. We have to hold strong that our dreams of growing old together pan true. We need to embrace what has become our wake up call in taking little things for granted. Life gave us a huge stupid Lemon, forget the lemonade make a lemon drop shot...try to relax (yeah right) it's going to be a long long ride. 

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I'm stage four and will be on chemo for life. Before this I didn't realize that being on maintenance chemo was a thing. I thought you beat it or you didn't. My onc seems to think I have almost ten years left. And certainly a new treatment can come up in that time. So being on treatment for long term care isn't such a bad option. I'm disappointed but I'll take what i can get.

Jan

Kazenmax's picture
Kazenmax
Posts: 390
Joined: Feb 2016

Hi. I'm on folfiri. I've only had 1 treatment.  For me it was way rougher than folfox. Fatigue and endless nausea. I am going to speak to my oncologist about lowering dosage or removing irinotecan. I had T3N0 cancer.  It came back in my lungs and I had it removed along with lymph nodes. I'm considered cancer free right now but I still have to do the folfiri for 6 months. I am hoping that it does not come back but there's no predicting...

To a certain extent we are all terminal. No one get out alive. I try to live each day as it comes. I wish you the best of luck in this fight.

K

Otto605's picture
Otto605
Posts: 14
Joined: May 2018

I, too, am on chemo for life (stage 4 colon cancer).

Keep a positive attitude, be brave, and live life to its fullest.  We are all here for you.

Paul

betula's picture
betula
Posts: 83
Joined: Mar 2017

Thank you for the comments and understanding. 

Plsletitrain - Totally relate...I am a spriritual person but that is sort of a private part of me and I have a great friend who is very open about her spirtuality.  She knows what is going on but I have put off seeing her because I fear it will be too much!

Kim - I appreciate your involvement on this board so much.  You always have such kind words to say and I know that being here for others is a mission and passion for you and I thank you!

Twinzma - so very well put.  This is definetly new normal and I have flashes of our old normal too which gives my mind and heart a break. 

Jan - I continue to be amazed and inspired by your wonderful attitude and strength!

Kazenmax - first off, I always smile when I see your Eagles logo.   I grew up outside of Philadelphia and have been a fan since the '80's and cannot tell you how happy that super bowl made me!  I am sorry to hear you have had a rough time with the folfiri.  I hope your onc was able to adjust things to make it better.  I am sure I will have more questions after he starts and will be posting.

Paul - Thank you.  Keep us posted on anything interesting you do come across in terms of the alternatives.  Always have to keep searching and believing.

We will continue to keep up the fight until we can no longer!

Betsy

 

 

 

Trubrit's picture
Trubrit
Posts: 4969
Joined: Jan 2013

and then let it sit there, for a very long time. 

Where is our friend, PhillieG? He has been on chemo for years and years and years. No reason your hubby can't join that group. 

Chemo for life is horrible, no doubt about it, but, if that life is worth living, and the side effects are doable, then thats the way to go. 

I know your heart is hurting. That is a most normal reaction. Let it hurt, then let it heal, as you move forward with this new set of plans. 

I'm a fat lady, and I aint singing, no sir eee. 

May you both have many, many years of life ahead. 

Tru

optimist777
Posts: 38
Joined: Feb 2018

I've been battling stage4 CRC for 10 years, there is always hope.  One of the biggest problems is oncologists are so negative, it almost has a detrimental effect on the patient.  Everyone one is different, and don't be afraid at some point if you're husband has had enough to have him chart his own course.  He has to tell himself he can beat this, then take it one day at a time. 

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