how to decide between treatment and quality of life

[anonymous]

I have been on continuous treatment for mets now for 4 years, 2 of which have been chemo. I was very ill earlier this year and didn't think I had much time, but was lucky to have had a good response to my latest regimen. But as time goes on, it is getting more and more difficult to tolerate with more and more side effects. I find I am spending at least half my days in bed and on the days when I get out of bed, I am backing napping several times a day.

Even when I am up, I don't feel well.

How do you all balance effective treatment with quality of life?

I have 2 teenage kids and if it weren't for them, I wouldn't have been nearly as aggressive in my treatment.

Any thoughts, views, experiences, would be appreciated.

[Anonymous]

Dear, you have been through a LOT lately, and I am sorry to hear about this.

Ask your onc to discuss about your tolerance on increasing side effects, h/she may give you different and better meds. Then with new meds, you may feel better / energetic to get around.

Effective treatment versus quality of life really boils down to the individual's own perspective, and there is no rulebook to have a guide about this. Please listen to your inner voice, and talk with your family / friends about your feelings. You own your body, and nobody knows it better than you.

God bless...

[Anonymous]

You may want to check out some alternative treatments for the immune system. Just a thought for you. Hugs

[Lolly]

I think the advice to open a discussion with your care providers about quality of life will be very helpful. Just being able to talk about the issue will ease your mind and allow you to move forward in whatever direction you feel is necessary.
Bless you.
Love, Lolly

[Anonymous]

Dear annonymous:

I have put a great deal of thought into what I would do if I were in your position. My views are somewhat different to what most people's are on this board as my family has followed no religion for several generations and therefore I don't necessarily relate to the Judaeo/Christian/Muslim views of death & suicide that most people on this board would hold. I have noticed that most people have posted responses to this question anonymously so I will do the same.

But you did ask for different views....
From my point of view you have to balance your obligations to your teenagers of being alive to guide them versus reducing/stopping treatment. If they are young teenagers, you might be obligated to continue on despite great discomfort. But you have to balance this obligation against your quality of life. You probably have other family members who are prepared to step in if you can no longer continue on for whatever reason.

Death is a two-way street. Those who are dying have obligations that they must try and fill, but those that are living have even greater obligations. They should be prepared to release the dying from their oblgations so that they can be free to choose whatever they must.

Sometimes the choice of death over treatment is the right one especially if the quality of life that you are winning from your treatment is a poor one. This is a choice that I have already made.

I would suggest a frank discussion with your family. They might be very releived that you've brought the topic up.

Best regards, Anonymous.

[Steph N]

The fact that you are spending that much time in bed is worrying. Is it possible that you have some depression that is taking you even lower than the treatment? Many women have posted here that the emotional toll was almost as heavy to bear as the physical, and they needed to take some mood elevators to get them over the hump.

You also did not say what drugs you have been taking and if you are getting the shots to improve your white and red blood counts. These are expremely important in getting us through with a decent quality of life.
My treatment was quite harsh for both first line and mets, but I tried NOT to spend much time in bed during the day, even if I napped in an easy chair or loveseat. Also forced myself to get out as much as I could just to keep the beauty of the world in front of me. (I live in a pretty suburb with lake and mountain views very close by.)

[Peggy]

A couple of years ago I had this same question. My teenage son was 14 and I was worried if I continued on with more uncomfortable treatments and surgeries for his sake I would begin to resent him. I have a pretty good idea of what you're going through.

My metastatic cancer took a turn for the better so, at the moment, it's not an issue. I think now, more than ever in your life, you need to put yourself and your needs first.

Peggy in Orlando

[beatrice]

I have gone through the same problem recently, even if for a different reason. I was found mets on my brain. Most of the doctor suggested Whole Brain Radiation, which can really jeopardize quality of life. Only one (another one just gave his approval) suggested stereotaxis, which kills only the four, and does not protect the rest of the brain. I chose the latter. I thought noone really knows when is the end, not the 'healthy ones' nor those who are ill. It's such a mistery. And up to that moment... I want to live in the best possible way.
It's been the hardest decision I have taken in my life. Anyway, this is just my experience. I don't know whethere you have already decided or what have you decided. In any case... good luck!

[Lisa]

You are tired. Four years is a long time to fight. And raising 2 kids during that time is exhausting without your bc fight.

There are times in all our lives when everything seems "grey", when we're bone tired, when we wonder why we're doing this. But then something or somebody comes our way and our path seems to lighten up. I call these people, places and things "trailmarkers". They tell me I'm on the right path, regardless of how discolored life seems. You'll know them when you meet them, if you'll stay open. The people will say something to you that really strikes a chord. Of you'll suddenly see a common object in a new light.

Another couple of thoughts. If you aren't on an antidepressant, consider one. I've taken them at two different times during my cancer battle, and they have made a big difference. Personally, I like Lexapro. If you've never been on an antidepressant, don't worry. You won't be a zombie, or floating sky high. You are just better able to balance your life.

Also, it sounds as though you're suffering from fatigue. I have a touch of it right now, too. Do take your naps; they're important. But more important is to exercise. Hey, I heard that groan! Yes, moving, like walking is the best thing to fight fatigue. Along with a diet that keeps your insulin levels level.

Keep talking to us. We can share all of this.

Love and healing light,

Lisa