The decision to stop chemo

[Tab]

This is something I've thought of a lot lately as I get into later stages of chemo (quick background on me: chemo on and off for 5 years, have a slow-moving stage IV metastatic cancer). Thomas Menino (of Boston) is in the news for choosing to stop chemo, but it's a decision many wrestle with.

In my case, any new chemo is palliative. We're not going to fix the problem. We're not going to "cure" me. We can delay stuff, but we can't fix stuff. As I said, it's a slower-moving cancer.

The problem with chemo is that you become inured to it - you build a tolerance and your cancer builds a resistance. So you can only use a particular treatment for so long before it ceases to become effective.

In my case, I've run through a lot of the standard treatments, and we're starting to run out of things that don't have major side effects.

The question I'm presented with is whether or not I want to bother continuing with chemo. Spoiler alert: I don't. It means degraded abilities (I get a lot of the side effects, which can be debilitating) and I don't know that it's adding to my life. I think without chemo I'm still good for a couple of years, and they'd be years that I'd enjoy.

I'd like to hear your thoughtful response/position.

- Tab

[LiberalEsto]

1. I'm so sorry for what you are going through, Tab

In your place, I would continue with treatments in hopes that someone might come up with a new reatment or even a cure, as long as health coverage is available.

Of course that would depend on how much I was suffering, how much I could handle, and what and whom I had to live for. If I had lots of support, interest in life, or maybe a grandchild on the way, I'd tough it out. If I were alone, lonely, miserable and tired of living, I'd stop treatment.

Good luck to you in whatever you decide.

[Tab]

3. Well, it's both complicated and outrageously simple at the same time, I think.

Complicated in how it affects others. Simple in how it affects me.

So, I have the benefit of a slow-moving cancer. It's been 5 years and I suspect I'm good for a couple more. As opposed to a friend of mine who just found out and has a short expiration date (thoughts be with him).

Continuing treatments is very debilitiating, and when you get to the stage I'm at (treatment stage, not cancer stage) we're getting into all kinds of weird side effects - the last major treatment had blisters on my feet and hands (feet had to be protected to not get infected), oral blisters (hard to talk), fatigue, not eating (got me in the hospital for a weekend for dehydration and low blood pressure) among other things. So it's not necessarily simple to just "keep on with it" (not that I don't value your opinion) but there are negatives associated, and the big question is, why not just stop and enjoy 2 years rather than continue and suffer 2 years.

It's a big meta-question. I'm posing it here and appreciate all responses. I just wanted to respond to this one and clarify the situation more.

[Solly Mack]

2. (((Tab)))

I honestly don't know what to tell you other what I told my family. If it comes to that, I'll live out what time I have without the side effects - which almost did me in. Seems my system is too weak even for weak chemo. I don't think I can go through it again. But if I should have to, who knows how I'll do it at that time. I only know how I feel right now.

You know you and you know how you feel.

I wish I had some great insight or profound thing to say but I don't.

(((Tab)))

[Siwsan]

4. My sister is in this same situation

She was first diagnosed with breast cancer about 19 years ago. She went a good 15 years, supposedly clear and in the "cured" zone. Then it reappeared and it's been relentless. She went through radiation and more chemo treatments than I can count. For a short period she made great progress but this last round significantly diminished her quality of life. They have moved her to pallative treatment.

This whole experience has convinced me of one thing - should I ever find myself in her situation, I will put my quality of life ahead of the quantity and forego the chemo.

[Tab]

5. It's not a forever thing

I could choose, at any time, to resume. Also, please be free in your opinions. The ultimate decision is mine. I have a good idea of how I want to spend my last few years, but it's a discussion that affects all of us, so I'm opening it up.

[BobbyBoring]

6. I wouldn't start again.

I have a blood disorder and am treated in the Oncology center. I would not live the way some of the patients "Live". I never thought life was subjective, but it is in some cases.

My S.O. had hep c and was treated with chemo. She was so sick from the drugs that she had to quit after 5 months. I have a friend who's brother's practices Eastern medicine. TOTALLY against her Drs. wishes, we went to him and after 4 months of his concoctions, she was virus free.

This was 11 years ago. She still has ill effects from the chemo, the worst being " Chemo brain". All short term memory is gone and half the time, she's in some state of confusion. Not pretty.

All that said, I wouldn't recommend you going back on it but I would encourage you to check out alternatives. earthclinic.com is a great place to start.

I wish you the best!

[Nay]

7. I have Stage 1 breast cancer and was forced to think about this problem.

Obviously, a Stage 1 diagnosis is much more treatable than your stage, but the shadow of cancer is there whether you have been 'successfully' treated or not. Cancer can ALWAYS come back, even if you have a very favorable prognosis like mine.

Like you, I value my quality of life more than the length of my life. I would probably refuse chemo that made me that miserable. I hope to never have to make that decision for myself, but that's what I would do.

[sinkingfeeling]

8. Tab, I had Stage IV cancer on my tonsils and declined the chemo. I did have

both surgery and 33 radiation treatments. The use of chemo would only have increased my chances for survival by 5%, so I declined.

I think you have to make your own decision about whether you continue or not. Since you know it's just delaying the final outcome and not fixing anything, and you suffer with the chemo, a decision not to continue with chemo is very logical in my opinion.

[Tab]

9. Thanks for all the thoughtful responses

Of course, that doesn't mean this thread is closed; still open to commentary or discussion.

I think I've decided to not resume chemo - at least for now (my way of justifying it) - which is probably effectively forever unless something magical comes along. I've been miserable on chemo and feeling good without it. Since I'm past the curative state, it only defers the inevitable and probably not by enough to justify it. I'm thinking about trying a break and getting (relatively) healthy.

Love to all,

- Tab

[onethatcares]

10. I just saw this post and

although I am but a caregiver I would think quality over quantity also.

Not much more to say except that I hope the best for you which ever way you decide to go.

What does your closest think? Have you discussed with them?

[Tab]

11. Thanks for your thoughts

I have discussed this with my family (mainly my wife, mother, and to a lesser degree my son, plus others). Obviously it affects them.

Generally they all take the position that it's my choice (of course) but they've been pretty consistent in saying they wouldn't blame me if I stopped up to saying they'd probably stop themselves, given the same situation. I think the difference is that I'm not in a curative state - meaning, giving it up isn't automatically a death sentence since I'm going there anyway (as we all are, if we think about it). So, really it's just to delay the result, if it does that at all, and everyone knows how poorly I've tolerated chemo (or at least recently, now that I've been subjecting my body to it for five or six years), and they all seem supportive of it. I know they'd like me to live forever, or at least not die for decades, but that may not be a choice, and probably wouldn't happen even if I stayed on chemo; if I was on enough chemo to last that long, I'm not sure how much fun I'd be to have around.

Overall, I want to live my life, not be running to the emergency room every few weeks and missing work for weeks on end in between. They agree; the rub is no one is happy with the choices anyway, but they are supportive of my choice - no one's trying to talk me out of it. They know I've been through a lot of different chemo, so it's not like I'm arbitrarily giving up to see if I cure myself with green tea or anything.

[slipslidingaway]

12. One of the hardest decisions to make ...

and ultimately you will be the only one to decide when it does not make sense to continue. I really do not think anyone would want you continue if the side effects are severe and if the time it buys are insignificant. That being said they are making advances all the time ... so there is hope.
Ultimately life is one large balancing act and whatever your choice, just know you'll have support.

[2theleft]

13. You sound so much like my step-father..

He battled for 10 years. Similar thing - only palliative, no cure. The chemo was horrible. The first 5 years were "ok"..spread out enough where he could have periods of feeling "good", then the treatments got closer and closer until it was basically treatments back to back and the only breaks seemed to be in order to let his counts build back up so they could start again. I approached him around year 7 to talk about stopping. It just seemed like his treatments were killing him. It was so hard watching him feel so bad so often. My mother came in during the conversation and had a conniption fit (selfish, probably some type of diagnosed personality disorder)... So, for my mom, he continued treatments up until hospice. And he was miserable and sick, and never really had a good day for the last 2 years. It just made me so damn sad. I'm mad and teary eyed right now just thinking about it.

I read all of your posts because, like I said, you remind me a lot of my dad and his journey, and he is probably the best man I've ever known. I have no advice other than do what YOU want. You deserve to feel good for a change. And you deserve to handle your treatment in the way that makes the most sense to you. Your family obviously matters a lot to you and I am SO very happy to read that they are supportive of your decision. They obviously love you a lot and I am very happy to know that.

Hang in there, Tab. Stay strong. You never know how you feel after 6 months of no treatments. Don't lock yourself in to a decision. Be happy, be peaceful. However you can do that, is what I would encourage you to do.

[Tab]

14. Thank you so much

and I'm sorry for your dad (it wasn't clear, but I guess he has passed?)

I'm trying to avoid that situation. I've had 5 years of chemo, but we've used up the "good" drugs and the last two have kept me pretty incapacitated (until I stopped them) and my understanding is that any future drugs will have nasty side effects and there's not much that will improve it. To my mind, it's a no-brainer (which I might not have one anyway). If they're not going to make my life better, why bother? If you told me to deal with it for a year and at the end of the year I'd be cured, I'd probably go for it, but no one is making any such promises.

If I may say so, I wouldn't be so hard on your mother. She must have been scared and frightened at the possibility of losing him, and stopping treatment would be tantamount to just letting him go and she probably couldn't face that.

My wife's not in a big hurry to see me go (or maybe she is, I'll have to ask ) but she knows I don't want to spend years as an invalid to "prolong" my life. The same with the rest of the family - they're not thrilled, but they understand, and if I ask them what they would do if they were in my shoes, they also acknowledge they'd do the same thing.

Hey, if I feel good, I might be here for another 5 to 10 years - who knows. I've already exceeded my original expiration date.

Best to you and your family and thanks for speaking up.

- Tab