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Palliative Chemo or Stay on Morphine?

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Posted 1/26/2011 12:17 AM (GMT 0)
Hello everyone, Mary here.

I have a difficult question and realize that it's a hard one.

If you were suffering from diffuse metastatic cancer, would you choose to do 'palliative chemo' or just to stay on morphine/other pain killers "for the rest of your life"?

Willie won't be reading this.......

I am very worried about what's ahead for him and wonder if his choices would be mine.

Thankyou.
Posted 1/26/2011 12:30 AM (GMT 0)
This is a tough question.

I cannot pretend to put it into the right frame of mind except to say that there is probably a point that I would say stop. If we are talking about all options are played out and my PSA was still on its own...a decision may have to happen at that point whether it's worth going through another round of chemo or a clinical trial.

That stated,
Willie can still keep his hopes up if he chooses to move forward with therapy. Some things work and work well. I know he is undergoing some difficult times, but I have seen things can get better. Maybe not forever, but long enough for quality living.

Peace to you, Mary. Let Willie know we love him and pulling for him...

Tony
Posted 1/26/2011 12:30 AM (GMT 0)
Mary, every answer will be a very personal one, and no one can tell you what to do.

If it were me, and I have ready every word you have shared about Willie, I would choose to have at-home hospice care, be under the best possible pain-managment program, and be with my family.

If I knew, that the chemo was only going to buy a few weeks or perhaps months at best, but at the cost of being utterly miserable with terrible quality of life side effects, then again, just my personal opinion (not a medical opinion) I would not do the chemo, not if it offered zero chance of hope.

Hope you find the real and right answer in your heart and more importantly, in Willie's heart.

David in SC
Posted 1/26/2011 12:31 AM (GMT 0)

Not an easy one to touch on, Mary. I admire your courage for asking it. And since you asked, I'll try my hand:

None of us have been privy to Willie's consultations with specialist(s), and none of us will know the level of pain and discomfort he is in. But if it were me, and I think that's what your asking us, I would opt for the hospice route, i.e.--morphine and comfort. To be honest, I'm not sure what "palliative chemo" would look like. Seems almost like an oxymoron to me. But I make my suggestion drawing on the experience I had when my father was being taken down by lung cancer, and I was the primary caretaker. We called in Hospice, and I've never regretted the decision. I believe it sped up the disease, but my father was out of pain, and until the very, very end, was able to enjoy his fanily for the time he had left. Again, I'm saying this in the context of "if it were me", based on one man's personal experience. I hope you find peace with whatever decision is reached.

Sincerely, Arnie in DE

Posted 1/26/2011 12:34 AM (GMT 0)

Yes, Very Difficult.

I moved my father in to my house and took care of him 11 years ago as he went through the final stages of metastatic prostate cancer.  He was  a very brave man and I think that during this time I learned what the true meaning of being a "man" was. He made his own decision and all of us supported him the best we could.  I don't really know if a person can help you with that decision or not...But because of the Healingwell community I do know that you never need to be alone.

My best....Hero

Posted 1/26/2011 12:35 AM (GMT 0)
Mary,
There is an article today in the InfoLink blog that might have some helpful information for you....There are several links to look at...

Here it is...
prostatecancerinfolink.net/2011/01/25/asco-issues-guidance-on-end-of-life-care-for-cancer-patients/

Tony
Posted 1/26/2011 12:47 AM (GMT 0)
Chemo does one of two things.

1.) It makes you sick and provides some sort of survival benefit.

2.) It makes you sick and does not provide a survival benefit.

So, since you are calling it "Palliative Chemo" then I am assuming your Dr. told you it will not provide a survival benefit.  Then it will only make Willie more sick.  I am not even sure why they would offer it to you.  I would think the morphine would be the logical choice to help keep him as pain free and comfortable as possible with the time he has left.

Just my opinion.

Posted 1/26/2011 12:53 AM (GMT 0)
Chris,
Palliative care can reduce pain. Even if it's chemo. By shrinking a tumor you can improve quality of life even if for a short while. but I get your point. When my stepfather had lung cancer he insisted on doing everything he could ~ to no avail. My mother witnessed the cancer take him slowly. So when she was diagnosed with advanced cervical cancer a decade later ~ she had no fight in her. It tore our hearts out to see her give in. But give in she did. She died soon after she was diagnosed.

These are tough decisions...

Tony
Posted 1/26/2011 1:36 AM (GMT 0)
it's a very personal decision Mary, one i often think about.  as long as he's not in pain there is no wrong decision.  Willie is lucky to have you.  i wish you both the very best and think about you daily.

ed

Posted 1/26/2011 3:48 AM (GMT 0)
My father was diagnosed with PCa at 72 and chose RT. It lasted 12 years. The PCa metastasized and showed up in his lung. Oncologist recommended chemo. After we talked to him about options, he chose no treatment except morphine shots and drips to relieve pain. He lasted three months without pain and died peacefully. I often thought about this and if my PCa metastasized and it were terminal, I would probably choose the same path.

However, this is a very personal and painful decision and none of us can advise you. We can only offer our sympathy and prayers and hope he finds the path.

I am so sorry you are in this situation and wish you both the best.
Posted 1/26/2011 3:53 AM (GMT 0)
Mary I have tryed to come up with some words of wisdom,but you and you alone can know what Willie would want .If he is not able to tell you in words follow your instinct and your heart as a wife and mother you will know the answer as hard as it is to may to make or help make a decision we do what we have to for our family and please have no regrets for doing so.

Deidre (waterloo)
Posted 1/26/2011 4:27 AM (GMT 0)
I have no words of advice for you, but just want you to know that you and Willie are in my prayers.
Posted 1/26/2011 2:36 PM (GMT 0)
I question is there only two choices, but you know me. I wish you hold up well through this.
Posted 1/26/2011 2:49 PM (GMT 0)
Mary-
Our sympathies to you and to Willie - facing a very difficult path or paths to take ... we cannot make the decision for you, but can reflect on your question to us here at HW....

-my background story -
- when my partner, John ( 1939-1996) was in ICU (level 8 coma), my main concern was trying to keep his brain stimulated and have him wake up as well as not having him in any pain.... the latter was not always followed by hospital staff (life support setup and a myriad of tubes, daily defibs, etc) which caused suffering for John and me.
- there was potential at one point when he finally woke up after 10 weeks, and we planned on a hospice for his rehab, due to respiratory and renal failure, etc.... but when John was asked by an Intern if he wanted to continue ... he shook his head, "no"... the next day he lapsed back into a coma and three weeks later, after another infection took hold, it was decided to terminate life support and let him pass away with dignity ...

From what I have read in your postings, you are a wonderful wife, friend, supporter, an angel to your Willie...
I would be leaning towards a hospice situation which would create an environment for you and Willie to share quality time together. That may include medication to decrease the pain Willie feels (without dulling the mind) and possible other medication to slow the progress of the disease...

As stated above, the final answer is yours ( and Willie's)....

hugs,
Bronson & Steve
Posted 1/26/2011 6:27 PM (GMT 0)
Mary - I am very sorry to hear about Willie's situation. Because my father died from prostate cancer, I had to deal with some of these pain management type issues. Fortunately, I had discussed some of them with my father when he was in somewhat better health, so I had an idea of what he would want. In any event, my suggestion is this:

1) Willie should be in a hospice program -- that does not mean that he should live in a hospice facility, but you should have hospice involved in his care, since they are specialized in pain management for terminally ill people, and they tend to be very good at it -- so I would ask hospice to become involved. If you don't know where to find a good hospice, you an ask at your hospital and they will point you to the right place. Hospices tend to be set up to get involved very quickly, when asked, so there likely will not be much delay.

2) I would then try to set up a meeting (very soon) with you, the hospice doc, and Willie's oncologist, to determine a course of care. The hospice doc and the oncologist can jointly decide whether chemotherapy should be a part of the plan for making Willie as comfortable as possible, or whether other methods (such as morphine) would be preferable. I don't think anyone on this board can tell you whether palliative chemotherapy would do more good or harm -- but the oncologist and the hospice doc together will be able to advise you.

I pray that God will give you the continued strength to help Willie through the circumstances he is facing.

Best wishes, medved
Posted 1/26/2011 8:10 PM (GMT 0)

Mary,

Lots of excellent comments in response to your questions although I think Dave in SC may have said it best:

"If I knew that the chemo was only going to buy a few weeks or perhaps months at best but at the cost of being utterly miserable with terrible quality of life side effects I would not do the chemo"

A coincidence, but just yesterday I had this very same discussion with my medical oncologist. Somewhat premature in my particular situation but advance planning for any anticipated life's changes has always proven to be of measurable benefit over years past. He told me QOL should always be the priority and, unless chemo therapy could realistically add 6 months plus to my lifespan, then face the transition in relative dignity with hospice care.

My 56 year old brother-in-law died in agony (after 3 rounds of agressive chemo therapy over a period of 9 months) from metastized lung cancer on December 4, 2010 because of poorly thought-out end-of-life planning (none). He had no will, no living will, no durable power of attorney, no DNR request, no letter of final instructions. What a mess! His sister (my wife) is now trying to handle an almost impossible situation from long distance, complicated by bickering relatives, all of which could have been prevented by a modicum of research with follow-up planning/implementation.

I hope some of these responses will help guide you. I know you will do the right thing by Willie under what every member of this forum recognize to be very difficult circumstances.

All best,

Mitch in SC

Post Edited (Mitch128) : 1/26/2011 1:21:21 PM (GMT-7)

Posted 1/26/2011 11:41 PM (GMT 0)

mary I lost my father to liver cancer, I loved him and I did all I can do for him.

he last four days of life he was in hospice in the bronx,and the only thing I will always regreted is I should put him in hospicr earlyer because the staff are very profesional

when it come to this type of care,my father pass away very peacefuly.

I pray for both of you, you guys have the entire family of hw with you.

Posted 1/26/2011 11:47 PM (GMT 0)

ChrisR said...
Chemo does one of two things.

1.) It makes you sick and provides some sort of survival benefit.

2.) It makes you sick and does not provide a survival benefit.

So, since you are calling it "Palliative Chemo" then I am assuming your Dr. told you it will not provide a survival benefit. Then it will only make Willie more sick. I am not even sure why they would offer it to you. I would think the morphine would be the logical choice to help keep him as pain free and comfortable as possible with the time he has left.

Just my opinion.

I am sorry that Chris has posted such a negative post. None of us know just what Mary means by "chemo." It is not well to assume too much.

There is no information on Willie's mental state. So I say that, assuming that he can do so, it is his choice.
Posted 1/26/2011 11:59 PM (GMT 0)
mycroft I tend to agree.

Palliative care does not mean no survival benefit. It can certainly extend life. It can also improve quality of life. Palliative care is not intended to cure people, at this point it is care that is being weighed based upon survival benefit and pain control versus morbidity against quality of life. In many cases the latter outweighs the former but not always.

It is certainly a tough decision to forego therapies. But there is so much to consider...

Tony
Posted 1/27/2011 4:22 PM (GMT 0)
There are chemos that do not cause the horrendous side effects, but aid in controlling tumor growth. I've not heard them called palliative although I know radiation can be called that. A friend who has been fighting breast cancer for years has been on it with no loss of quality of life (or hair).

If you listed just those 2 choices, it must mean he cannot control pain with the palliative chemo. Are you able to start Willie off with the chemo and then change quickly over to pain control if it is causing him too much distress? Is the palliative chemo one he has not had a chance to try against his mets? Perhaps he will be the one in millions that respond to the chemical with good results.

Hope all the heartfelt responses help you in such a difficult time. Prayers going out to you...
Posted 1/27/2011 6:06 PM (GMT 0)
My father had two bouts with prostate cancer but it was chronic leukemia that made him say, "enough." He, with my mother agreeing, decided further treatments would just mean more of the same and that it wasn't worth it for no improvement. They moved a hospital bed into their living room and had in-home hospice care for his last few weeks. I understand they wouldn't have changed anything and still laugh at the quips he made as his funeral was being planned. Above all, it was a decision he made months before his actual death while he could still make decisions.
Posted 2/6/2011 12:14 PM (GMT 0)
Willie B and Mary - just to let you know you are in our thoughts...
-supportive hugs,
BRONSON & STEVE
Posted 2/6/2011 10:34 PM (GMT 0)
Mary here,

When I posed this question, I was still in shock from Willies' choice to go with chemo.

He's always said he'd never, NEVER, do it.

Guess when the path narrows, one can always change their mind as did Willie.

It was a dreadful day, very hard to watch them pour toxic chemicals into Willies' vein.

Daughter and I walked around the cancer centre a few times, over the four hours......cried, talked and walked.

Willie tolerated the medications well, very well indeed.

It's now been 10 days and Willie is doing much better than we could have ever imagined!!

We're not going out dancing but he's one hungry bear, up in a chair watching tv and reading!

His pain meds have been cut in half, not needed at the moment and he can walk, shower etc.

Truth be told, for four days he felt like he'd been hit by a truck and we used a lot of anti emetics.

Then, he got hungry and has not looked back.........I am truly amazed!

Thankyou, again, for all of your support and encouragement!
Posted 2/6/2011 11:04 PM (GMT 0)
that's great news Mary.  i wish you both the very best!

ed

 

Posted 2/7/2011 2:57 AM (GMT 0)
Mary, I think of you and Willie often and you are in my prayers. I'm so glad to hear that the chemo worked so well. Our closest friend, of more than 50 years, did a palliative chemo ---- i.e. it was not to cure, but to prolong a quality life --- and it made a difference. That difference is coming to an end now but in the interim we've all had some great living!

Please tell Willie up here in the frozen north warm thoughts are flooding his way.

Sheldon AKA Sleepless
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