Advice please! Husband has progression!

caregiver3

I need some advice.  It’s been a while since I’ve posted.  Just to recap since it’s been a while, dh at 49 was diagnosed in Sept. 2017 with large tumor in sigmoid.  Colon resection was done in Oct. 2017.  Soon after surgery, found out he was really stage 4, and he had tumors in his liver and possibly lungs.  Liver was biopsied and positive for mets.  He then went through 6 wounds of FOLFOX with Avastin, a break and then liver resection and ablation.  Then 6 more rounds of chemo.  He had to have dosage reduced and didn’t have ox the last two.  He finished this chemo in July 2018, and his CEA started going up.  This has always been an accurate marker for him.  It went up from 2, to 11, then 55.  Scans were done and new spots in his lungs spread throughout and the ones previously there had doubled in size.   He was not a candidate for surgery so he went back on chemo in January this year.  This time Folfiri with Avastin.  He could not tolerate this chemo.  It made him deathly sick and nothing ever shrunk on it, it grew.  So he stopped chemo completely in May this year and decided he wanted no more treatment.  Fast forward to now and his CEA has gone way up and over the last couple months has doubled everytime and he is now at 188.  More scans were done and he has 5 tumors in his liver again in addition to yet another new one in lungs.

 So now for the advice I need and what’s going on now.  They offered him y90 for his liver, they will do nothing for his lungs because he isn’t surgical and he wants no more chemo ever.  So his lungs or anything in his system would not be treated and his CEA continues to climb.  The liver tumors right now are all in right lobe so they would treat the entire lobe.  He doesn’t want to do the y90, because at this point they are telling him that it “may” only extend his life at this point by a few months if it works and the cancer doesn’t pop up elsewhere or his lungs get worse.  I don’t know what to do.  He keeps asking me if he’s made the right decision and what do I want him to do.  I don’t know what the right answer is.  I will never think that he is giving up ever.  To me cancer patients are not giving up ever, they fight everyday regardless of treatment choices.  But I can’t help but think he’s making a mistake and he might be giving up months of his life.  But there is no guarantee that the y90 will work and we can’t prevent or slow growth of tumors anywhere else cause chemo didn’t work for him and made him so sick.  So what do I say?  I don’t know what the answer is.  It’s like he’s looking for me to tell him what to do and I can’t do that . I just keep telling him that if he doesn’t want to do treatment, don’t do treatment.  And if he changes his mind I will support that too.  The good thing is right now, he actually feels ok considering.  Or I guess I should say he feels better off treatment.  He gets tired easy and does cough some and has neuropathy and sometimes he gets confused.  The doctor is telling us that if he does nothing he probably only has 6 months.  

 

Trubrit

It really is an impossible situation

One of those 'Damned if you do. Damned if you don't' situations. 

Just as you can't tell you hubby what to do, we can't tell you what to do. It seems what you are doing now, is all you can do. Supporting him in his decisions.  As long as he knows you feel he could do more, then see what he says.  

If he truly is to the point where more treatment would just cause the time he has left to be miserable, and you think that quality time is beter, then that is what you have to run with. 

Being blunt - we all want that miracle, but most don't get it - if his days are numbered, how do you want to remember them? To remember him? Do you want memories of him sick and miserable? Or would you like to remember him living the best he could and happy? 

I am so very, very sorry for the position you are both in. It breaks my heart. 

Stick with us, and let us know how things are going, both good and bad. 

My thoughts are with you as you make decisions and face the future. 

Tru

Joan M

My liver has been clear for 2 years after y90

I have been on avastin also and that is the one that is supposed to stop new tumors from growing.  it is considered a biologic med.  

 

It can extend your life by more than just a few months.  Is he able to get on the avastin and xeloda maintainence chemo for the lung tumor?  It can add many years to  his life with few side effects from the xeloda tablets.  It isn't as bad as the folfiri or folfox vboth if those combos are really hard on most people.

There was a recent post on here about opdivo and stirvaga combo.  they didn't post about side effects but everyone is asking them about it.  Maybe he can try those?  

I had a cryoablation for lung tumors in 2017,  The tumors they ablated are still gone.  The other small ones did grow over the last few months when the folfiri stopped working.  

I am going to check on the opdivo combo because the oxaliplatin made me really sick this weekend I was in the hospital.  I was ready to give up myself.  Thankfully I am feeling better and live  to fight another day. 

good luck and god bless.   

 

caregiver3

Trubrit said:

It really is an impossible situation

One of those 'Damned if you do. Damned if you don't' situations. 

Just as you can't tell you hubby what to do, we can't tell you what to do. It seems what you are doing now, is all you can do. Supporting him in his decisions.  As long as he knows you feel he could do more, then see what he says.  

If he truly is to the point where more treatment would just cause the time he has left to be miserable, and you think that quality time is beter, then that is what you have to run with. 

Being blunt - we all want that miracle, but most don't get it - if his days are numbered, how do you want to remember them? To remember him? Do you want memories of him sick and miserable? Or would you like to remember him living the best he could and happy? 

I am so very, very sorry for the position you are both in. It breaks my heart. 

Stick with us, and let us know how things are going, both good and bad. 

My thoughts are with you as you make decisions and face the future. 

Tru

Thanks Tru!

You have always given such good advice and comfort!  This is just so hard and so awful!  

caregiver3

Joan M said:

My liver has been clear for 2 years after y90

I have been on avastin also and that is the one that is supposed to stop new tumors from growing.  it is considered a biologic med.  

 

It can extend your life by more than just a few months.  Is he able to get on the avastin and xeloda maintainence chemo for the lung tumor?  It can add many years to  his life with few side effects from the xeloda tablets.  It isn't as bad as the folfiri or folfox vboth if those combos are really hard on most people.

There was a recent post on here about opdivo and stirvaga combo.  they didn't post about side effects but everyone is asking them about it.  Maybe he can try those?  

I had a cryoablation for lung tumors in 2017,  The tumors they ablated are still gone.  The other small ones did grow over the last few months when the folfiri stopped working.  

I am going to check on the opdivo combo because the oxaliplatin made me really sick this weekend I was in the hospital.  I was ready to give up myself.  Thankfully I am feeling better and live  to fight another day. 

good luck and god bless.   

 

Thank you!

Thanks for the reply and experience!  He will not do any type of chemo ever again he says.  That’s why they offered the y90 for his liver, because the liver is way more pressing than the lungs we are told.  I’m just so reluctant to press him to do the treatment, the y90, because I don’t want it to be my decision, I want it to be him.   His reasons for not doing it is he just doesn’t want to go through anything else.  He feels that with no cure, that his time will come either way.  And has enjoyed not having to do any type of treatment and it seeming to be somewhat normal.  The doctors said the y90 would only buy a few months due to the activity and number in his lungs and the fact he won’t do chemo.  I don’t want to lose him!  I will always want more time!  This is so hard.  I can’t believe we are here.  

Joan M

caregiver3 said:

Thank you!

Thanks for the reply and experience!  He will not do any type of chemo ever again he says.  That’s why they offered the y90 for his liver, because the liver is way more pressing than the lungs we are told.  I’m just so reluctant to press him to do the treatment, the y90, because I don’t want it to be my decision, I want it to be him.   His reasons for not doing it is he just doesn’t want to go through anything else.  He feels that with no cure, that his time will come either way.  And has enjoyed not having to do any type of treatment and it seeming to be somewhat normal.  The doctors said the y90 would only buy a few months due to the activity and number in his lungs and the fact he won’t do chemo.  I don’t want to lose him!  I will always want more time!  This is so hard.  I can’t believe we are here.  

Sorry to hear that

But I totally understand.  I felt like giving up this past weekend.  Thought I was going to die on Saturday. Went to the ER and spent three days in the hospital.  Feel much better now.  But not wanting to take the same chemo again. 

 

Real Tar Heel

caregiver3 said:

Thank you!

Thanks for the reply and experience!  He will not do any type of chemo ever again he says.  That’s why they offered the y90 for his liver, because the liver is way more pressing than the lungs we are told.  I’m just so reluctant to press him to do the treatment, the y90, because I don’t want it to be my decision, I want it to be him.   His reasons for not doing it is he just doesn’t want to go through anything else.  He feels that with no cure, that his time will come either way.  And has enjoyed not having to do any type of treatment and it seeming to be somewhat normal.  The doctors said the y90 would only buy a few months due to the activity and number in his lungs and the fact he won’t do chemo.  I don’t want to lose him!  I will always want more time!  This is so hard.  I can’t believe we are here.  

Sorry for what you're going

Sorry for what you're going through, your husband is going through. While my situation is not yet as dire, I'm starting to feel like he is, that either way there's not much to do, so why ruin the quality of the life remaining? It's a tough decision. I know my family is going to freak out if I say I want to quit chemo and so will my doctor because she thinks I can beat CRC. It's my life in the end but I have people depending on me so it's really not just my life. A mistake allowed me a month off from chemo and wow I felt so much better (and handled it better when I got back on), and that was the impetus for my change of heart.

Butt

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