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Just needing support! Inoperable and not curable!

caregiver3
Posts: 46
Joined: Oct 2017

It’s been a while since I’ve posted.  It’s been a crazy rough few months!  To summarize our story, here it goes.  Husband diagnosed in Oct 2017 with cancer in sigmoid, originally thought stage 3b, but quickly learned stage 4.  Mets to liver and a question mark for the lungs with multiple nodules there.  Fast forward to now after colon and liver resection over the last 1 1/2 years and 15 rounds of chemo, here we are.  Multiple nodules in lungs have grown and multiplied and are cancer.  And still some spots in his liver.  He has had 3 rounds of FOLFIRI with Avastin.  1 with a reduced dosage.  This is after 12 rounds of FOLFOX with Avastin and a short break.   And he is done!  He is tired of chemo, the side effects have been terrible and he doesn’t want to do it anymore . He has been deemed inoperable and not curable and he just doesn’t see the point in suffering through chemo instead of having some quality of life left for however long that is!  After much discussion with the doctor, he has decided to take a short break in order to gain some strength back and do some things he wants to do as a family and then try a reduced dosage again 3 weeks apart instead of two.  I am heart broken because I don’t want to lose him, but I don’t want him to suffer on chemo either!  So at this point, I’m just supporting whatever he chooses to do.  The doctor told us that he probably has less than a year.  I’ve begged him to get a second opinion and he doesn’t want it.  He trusts the doctor, and so do I.  So here we are.  

 

I guess the point in this posts is just to vent and get some support.  As a wife and caregiver I want to give him all the support I can and hoped that some of you going through this could maybe offer some tips and advice on anything I can do to make this any easier.  I just feel like I’m going through the motions day after day and can’t even stand the thought of him not being here.  I wish I could do something!  

 

Thanks for listening!

Joan M's picture
Joan M
Posts: 374
Joined: Oct 2016

It has helped me immensely.  I have what they call Gilbert's syndrome so get sicker than usual because my liver doesn't metabolize the meds like most people.  I ended up in the hospital after one dose of Irinotecan January of 2018.   

Now I get either 80% of 70% of usual dose and am doing much better on that.   I also have to go back between the irontecan for bolus 5FU becuase having the pump on for 48 hours made me sick that whole time and also was causing irregular heart beats (arythmias.) 

The Folfox was terrible  I was on that for only 8 rounds then went on maintainence chemo of Xeloda and Avastin, was on that for 13 months,  They didn't test me for Gilberts syndrome until June 2018. 

Hope your husband recovers and does better on the 3 week schedule and reduced doses.

 

caregiver3
Posts: 46
Joined: Oct 2017

My husband has Gilbert’s too!  Maybe this is why he is reacting so bad to chemo?  

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

I'm so sorry for you both. But I also applaud you for accepting his decisions and trying to do right by him. Inoperable and incurable but they still want to do chemo? So they're thinking they can keep it under control maybe? I'm also supposed to be incurable and will live with my cancer and do maintenance chemo for life. Maybe once he gets a break he'll feel differently. Treatments are like havng a baby, it's so hard at the time but eventually you forget just how bad it was. Maybe they could try a different chemo?

Anyway, good for you for being so supportive. As for advice, just keep doing what you're doing. If he's sad you can be sad, too. For both of you releasing emotions is huge. Bottling it up is too hard for everyone. If he gets angry or resentful it's normal and will pass, just try to understand. My husband just kind of goes with the flow of what I'm feeling.

Kudos to you, I've said it before and I'll say it again, I think being the caregiver is the tougher job.

Jan 

caregiver3
Posts: 46
Joined: Oct 2017

Thanks for the kind words!  And yes, the doctor feels that the chemo can extend his life as he had a partial response before but not a huge respsonse.  So, that’s kind of where my husband is coming from.  The quality vs quantity issue.  My husband feels that if he is going to die anyways that he would rather not suffer so much with the chemo.  Chemo has been so rough on him.  He’s had almost every side effect plus some.  

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

What chemos have they tried for him?

I don't blame him for feeling that way, it's tough. And I'd want more than just a partial response to go through that again. I'd say give him some time. When he's back in fighting mode he may be up to it mentally and emotionally. For me my CEA goes down every time I get my blood tested while I'm on it so that's encouraging and keeps me pushing through it. If it didn't I'de have a very hard time motivation myself to keep going.

Jan

caregiver3
Posts: 46
Joined: Oct 2017

He has tried Folfox with Avastin and now FOLFIRI with Avastin.  He has KRAS mutation so some target therapies are a no go for him.  So not much else to try.  He isn’t interested in doing the pills Xeoloda I think?  So really not much left.  

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

Xeloda did nothing for me but it was nice to just take pills and they didn't bother me at all. Folfox os horrid, I've never tried Folfiri. 

I don't know if this is helpful but the one I'm on has gotten progressively easier to take. The side effects are still unpleasant but less so than before. Maybe the body gets used to it? No idea. I'll never go on Folfox again due to what it did to me but I think I'd refuse anyway. 

Jan

Phoenix_66's picture
Phoenix_66
Posts: 118
Joined: Jun 2017

I understand your husband's delimma.Having fought this horrible disease for the past 13 years, they say that I am incurable and I also have the KRAS mutation. I am currently on a break from chemo with my last treatment being in September of 2018. My last PET scan in January showed a new "hot" lymph node near my left lung and my onc wants me to wait until my next appointment in April to see if there are any changes because it is currently too small to biopsy.

The cancer was originally in my colon and two lymph nodes and they gave me 12 rounds of Folfox. The cancer returned seven years later in my liver and they gave me 12 rounds of Folfiri with an additional 1.5 years of Avastin. The cancer returned yet again four years later in lymph nodes near my left lung and a vertibrae and they gave me 6 rounds of Folfox with an additional year of Ceramza.

Chemo was horrible for me as well and my wife and I have started talking about what to do next. She is having a really tough time and is not ready to let go or give up. I have explained that I am not giving up but would prefer quality over quantity. My faith has allowed me to have a unique perspective in that I am okay if I get to spend more time here and I am okay if not. I am sure your husband has the same sense of worry for you and your family and that no doubt weights heavy on us. I watched a close friend of mine fight cancer only to die a horrible death from the chemo. Her children were small and mostly only remember their mom being sick and having to help take care of her. I don't want that for my wife or children.

Not sure if any of this helps but i can definately relate to what your husband is going through.

caregiver3
Posts: 46
Joined: Oct 2017

It does help!  Thanks!  And yes, our faith is what we cling to the most during all of this.  I think he comes from the same place as you.  He doesn’t want to leave us, but because of our faith it helps with accepting what we cannot change!  I just don’t want to lose him, but I don’t want him to suffer either.  It’s so hard!

Phoenix_66's picture
Phoenix_66
Posts: 118
Joined: Jun 2017

My wife feels the same way. We will be praying for y'all!

caregiver3
Posts: 46
Joined: Oct 2017

Thank you!

myd's picture
myd
Posts: 39
Joined: Apr 2013

Hello, I was a caregiver.  My wife passed away two years ago this June.  I believe you are doing everything that can be expected of you.  Yes, it is not easy to watch your loved one go through something like this.  I know it is hard to think of other things, but get your legal and financial matters in order.  I do not mean to sound cold, but you must also prepare for what is coming.  If your situation allows it, maybe, speak with specialist about you.  I know that it is hard to find the time. I did not do that, but it would have been helpful.  You already seem to be doing the best that you can for your husband.  You are honoring the promise you made when you got married, but remember to be kind to yourself.  The medical establishment can be very helpful assisting you with the transition.  I hope that he becomes stronger as the chemo is stopped and that God gives him as much time with you as possible.  I hope you have access to the right assistance to make the new beginning more bearable.  Please make memories with him. I'm very sorry for what you and your family are going through. 

caregiver3
Posts: 46
Joined: Oct 2017

Thank you!  We are trying to get as much in order as possible.  It’s hard.  We try so hard to just enjoy each day as much as we can.  

abrub's picture
abrub
Posts: 2094
Joined: Mar 2010

My family knows that I prefer quality of life to quantity, and do not intend to do any more chemo or radiation. I'm okay with surgery, as long as it doesn't affect my quality of life, which is currently excellent. I suffered terribly through chemo (never had rads) and if it was merely to extend my life, it wasn't worth it.  While I was on chemo, I was existing, not living.  I know your husband wants to be there for you, but he has to balance his quality of life issues.  Take as much pleasure and joy as you can while you can be together.  Enjoy his feeling well and continue to build your life together.

Alice

caregiver3
Posts: 46
Joined: Oct 2017

What you are saying sounds so much like my husband.  He says all the time that being on the chemo and being sick for days and days isn’t living at all, but just existing.  I can’t even imagine how he really must feel!  I just tell him and his oncologist that I will support whatever he decides.  That he is the boss of his treatments.  This is so hard!  

Annabelle41415's picture
Annabelle41415
Posts: 6181
Joined: Feb 2009

You both have my support and although I'm not able to give you any suggestive advice I'd like to commend you on being such a wonderful caregiver.  Both of you have gone through a lot and I'm sorry that things aren't going better.  Quality of life sometimes just wins out in the end.  Wishing you both some peace in all of this horrible situation.

Hugs!  Kim

caregiver3
Posts: 46
Joined: Oct 2017

Thank you for the kind words!  

Kazenmax's picture
Kazenmax
Posts: 349
Joined: Feb 2016

It must be terribly frustrating to have so much on you and your husband. My heart breaks for you both. I will keep you in my thoughts. Sending love to you.

k

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