Onc has finally broken the news

Liz2011

My parents still believed that mum could rid of her cancer altogether with the chemo - they went for a second opinion this morning and the onc broke the news that her cancer will always be there and that the only option is chemo for life.
They're devastated as you could expect, given how badly mum is doing with the chemo I think this prospect is unbearable, to both of them.
I have tried to tell her that she won't be on Folfox for life (it would kill her before the cancer does!!) and that hopefully one day she can have a break from chemo, or be put on 'softer' treatments, but I think at this moment in time she's thinking that being dead may be a better option than having to go through this for the rest of her life.

The onc said that she should try and see it as a 'chronic condition' like diabetes or high blood pressure - it won't go away, but you can control it with meds. Clearly taking insulin isn't the torture that chemo is for mum, but hoping that she will eventually get used to this idea. I hope that somehow she finds an inner peace that allows her to carry on and think of the good moments still ahead. This is my goal from now, every time I speak to her (I live in the UK, they're in France).

One more step on our cancer journey, now I am worried about her getting depressed. She's on low dosage of Zoloft already, and takes Xanax when she feels anxious, plus sleeping pills at night. Not sure she can be more medicated than this...

As for me, very strangely, I feel numb. Nearly relieved that they know now what we have to face. I could never tell them, I never found the courage.

Liz

daBeachBum

Chemo For Life
Liz,

"Chemo for life" are hard words to hear. However, I can tell you that there are loads of us here who manage to live productive and satisfying lives even though we are tethered to the pump on a regular basis.

Chemo affects everyone differently and I am very sorry your mother isn't tolerating it well thus far. I would suggest that she has a frank talk with her onc about the symptoms she is feeling. There are a number of protocols out there and there may be another that is easier on her (I started with FOLFOX and have since swapped Avastin for the Oxaliplatin and find it's easier). She may also want to avail herself of some counseling. A cancer diagnosis and then chemo is a lot to process in a short amount of time! Good, general advice is to make sure that she stays well hydrated and gets in as much exercise and fun as she is comfortable with.

Ultimately though any decison she makes has to be hers. Perhaps she could join here herself and get feedback to her concerns directly from some of us "lifers"? It's a candid bunch here -supportive but frank.

Lastly, make sure you take care of you. Family and caretakers can have it just as hard as the patients!

Strength and love to your mom and your family,

Ray

Lovekitties

Dear Liz
I have no direct experience with chemo, but it seems that her onc should be able to do something which would help her tolerate the treatments while still managing to control the cancer.

I have heard of others who have had their dosages lowered with good effect.

I have heard of others who get pre-meds before treatments which helps prevent or lessen certain side effects.

Perhaps if they approach the onc and ask about these possibilities, they can find a treatment plan which helps your mom and will allow her to feel that 'chemo for life' will give her a life worth living.

Hugs,

Marie who loves kitties

Liz2011

Lovekitties said:

Dear Liz
I have no direct experience with chemo, but it seems that her onc should be able to do something which would help her tolerate the treatments while still managing to control the cancer.

I have heard of others who have had their dosages lowered with good effect.

I have heard of others who get pre-meds before treatments which helps prevent or lessen certain side effects.

Perhaps if they approach the onc and ask about these possibilities, they can find a treatment plan which helps your mom and will allow her to feel that 'chemo for life' will give her a life worth living.

Hugs,

Marie who loves kitties

Thanks both of you
We need to get over the initial shock first - mum is crying non stop at the moment and then think of the best way that we can tackle the situation. I will pass on your good comments and advice to her.
She's already tried a number of meds to manage the side effects. I think that unfortunately she is one of these people who can't handle the chemo well, for whatever reason.
I'd like her to open up to the idea of counseling (and my dad), we'll see. Now that they know the 'truth' they may be more willing to try things out. I always tell her, if it doesn't work or you don't like it, you quit!
Thanks again - a very tough few days/weeks ahead of us but hopefully she will come to accept this as her new reality and try to make the best of it...
Liz

westie66

Liz2011 said:

Thanks both of you
We need to get over the initial shock first - mum is crying non stop at the moment and then think of the best way that we can tackle the situation. I will pass on your good comments and advice to her.
She's already tried a number of meds to manage the side effects. I think that unfortunately she is one of these people who can't handle the chemo well, for whatever reason.
I'd like her to open up to the idea of counseling (and my dad), we'll see. Now that they know the 'truth' they may be more willing to try things out. I always tell her, if it doesn't work or you don't like it, you quit!
Thanks again - a very tough few days/weeks ahead of us but hopefully she will come to accept this as her new reality and try to make the best of it...
Liz

Another "Lifer"
Hi Liz: I'm another one who will likely be on FOLFOXFIRI (addition of irenotecan to the oxaliplatin/leucovin/5FU mix) for life as my cancer spread to the peritoneum and I can't have the necessary surgery for some reason. Managing the side effects of this cocktail has been my goal - had the amount and infusion rate of the oxaliplatin reduced (I'm going to check out Avastin but we may not have it here in Canada), take all sorts of pre-meds before chemo and another bunch after chemo, take supplements to control the neuropathy (works), and accept what I can't control (like the after-chemo fatigue - I just watch videos or hunker down with my dog Charlotte).
I understand what your mom is going through as it does get discouraging (I've been in chemo since August 2010 and have so many CTs and MRIs I've lost count). But we are all here to help her and you through it. New meds are coming out every day it seems (like Emend for the nausea).
Cheryl

marqimark

Life
Chemo for me was very hard. I just looked to the end of the treatment as my goal. I have no idea how I would have processed chemo for life.

I know that I would give it my all and do anything to improve quality of life (control symtoms).

My prayers to you.

plh4gail

Liz...prayers and wishes to
Liz...prayers and wishes to you and your family. I know how tough times feel and I am not even a chemo for lifer.

love to you and yours, gail