Re: Good Article: When to Stop Treatment?

[Guest guest]

,

I cannot get the link to the story about Molly to work. Would you

send it to me directly at sims.family@...

I would love to read it. Thanks for a great job, you really inspire

me.

Donna Sims

> WARNING: The following contains discussion about some sensitive

> issues (cancer death). If you do not wish to read material of this

> nature, please stop now and delete this e-mail!

>

>

> Hi All,

>

> I saw the following article in the paper yesterday...it relates to

> questions and issues many of us (advanced stage IVs) have here, so

I

> thought I'd post the link & give a few rambling thoughts.

>

> http://tinyurl.com/zhbu

>

> The article is the story of a 5 year old girl and her parents

> difficult struggle with her brain cancer diagnosis. Brain cancer

has

> a " worse " prognosis than colon, with a typically shorter survival

> time (please keep that in mind while reading!). Nonetheless, the

> issues raised in this article are really common to ALL " incurable "

> cancer patients, which is what makes it relevant to us on this

Board.

>

> Having traveled many of the same paths as Molly's parents, I

> immediately recognized many of the things they talked about. I too

> explored " Sun Soup " (never ordered it though...too

expensive!)...and

> herbs...and clinical trials....

>

> There are almost ALWAYS " further options " in the form of clinical

> trials...or " alternative medicine " ....or something...which can be

> done for MOST patients, regardless of how many chemos or therapies

> they have gone through and progressed on. The question is always a

> cost/benefit one: Given the uncertain nature of the potential

> benefit, is the COST (which may be financial, or in terms of

> pain/suffering from side effects, or time lost from being with

> family, or a dozen other things) worth the LIKELY benefit, even

> assuming the treatment " works " ? For example, if the treatment

added

> an extra month or two to survival time, is it worth it? How likely

> is the treatment to add survival time? If only a 20% chance of

> clinical benefit, is that " worth it " ?, etc. Sometimes you can

> discuss this with the oncologist, and get significant input

regarding

> the potential benefit. Always ask for SPECIFICS such as I have

> mentioned here...HOW MUCH survival time do you think this treatment

> could give...what PERCENTAGE of patients might be expected to have

> tumor shrinkage....what PERCENTAGE of patients might be expected to

> have " severe " side effects, etc. Oftentimes I guess they can't

> answer these things, but sometimes will have definite opinions and

it

> is surely worth the asking.

>

> There is, particularly within the colon cancer community, a pretty

> strong feeling/belief that most " alt therapies " are a waste of

time,

> especially for advanced patients (i.e. rapidly growing disease. A

> particular Alt med would have its BEST chance for " working " ,

assuming

> it does " work " , in NED patients. Most honest alt med practitioners

> will admit that). Some very good points were made on this topic by

> Arlene Harder, one of the founders of the Wellness Community

(cancer

> support group)

>

> http://www.learningplaceonline.com/stages/together/make-most.htm

>

> But the same considerations as Arlene discusses regarding alt med

> could also be made regarding conventional treatment or clinical

> trials. As previously noted (see reference in post #7860), not all

> clinical trials are particularly promising - especially the Phase I

s

> which may be all that an " advanced " stage IV is eligible for after

> having progressed thru multiple chemo regimens. I read somewhere

> that only around 5% of patients actually do benefit from a Phase I

> trial (most drugs being tested at this phase are failures). And

even

> many drugs being tested in Phase III trials are not that

spectacular,

> with HUGE numbers of patients needed for the trial to show

> minimal " survival benefit " of a month or two. See, e.g.

>

> http://www.cancerdecisions.com/030703.html

>

> and some of my comments here

>

> http://ourworld.compuserve.com/homepages/suthercon/cca4703.htm

>

> regarding the F. Horrobin commentary in the Feb 22 2003

Lancet

> (prestigious peer reviewed medical journal).

>

> In time, Molly's parents began to gain a better understanding of

> these issues:

>

> [snip]

> On the train ride back to Washington, they kept Molly busy with

card

> games, puzzles and word searches. But Ms. Trick says she and her

> husband also started thinking their research might not lead to a

> solution. They talked about whether their pursuit of more options

> might cost Molly what little time she had left to enjoy her life.

> " We had done everything we could think of, " says Mr. Foley. " Once

you

> start looking, one thing always leads to another thing, and you

just

> keep going down that path searching for the next thing to try. "

> Says Ms. Trick: " You keep going because you feel that if you're

doing

> something -- anything -- your child won't die. "

>

> And, even though only 5 years old, Molly herself showed a wisdom

far

> beyond her age (and beyond that of many adults). When faced with a

> choice of further chemo treatment (which would have clearly reduced

> her quality of life and had uncertain but likely minimal - if any-

> efficacy) vs " no more! " , she chose the second option:

>

> [snip]

> Enrolling Molly in the trial would mean she would have to undergo

> another operation in order for surgeons to install a central line

in

> a vein in her chest to make it easier to administer chemotherapy

> drugs and draw blood. She would need hours of chemotherapy

infusions

> and could suffer side effects.

> One of their oncologists had advised them to ask Molly what she

> thought.

> Molly was sitting on her parents' bed reading a picture book when

her

> parents sat down beside her. They told her there was another

medicine

> available and that she would have to go to the hospital. Molly had

> already told her parents that she was convinced the doctors would

> have fixed her already if they knew how. Now, she answered without

> hesitation, according to her parents, who made notes on the

> conversation in a journal at the time.

> " I don't want them to put the medicine in me, " she said. " I don't

> want them to do one more thing to my body. "

>

> Cancer is a very strange thing. It seems that some people with

stage

> IV cancer can survive a very long time while doing a minimal of

> treatments. I suppose I myself would fall in that category. First

> diagnosed with stage IV cancer in March of 2001, I have never had

ANY

> form of chemo until Nov. of this year when I started on Xeloda.

> This, of course, was completely against " oncologist

recommendations "

> and " recommended treatment course " . So here we are, almost 3 years

> later. Why am I still here? I don't think any of my doctors

> expected me to be, given the choices I made. And I can't even

answer

> the question myself! I tried some " alterative stuff " at the

> beginning of my " cancer journey " , but it is difficult to say

whether

> it really contributed anything or not to my survival (which is why

> I don't talk a lot about it here!). I sort of think

> that each cancer patient has a DIFFERENT cancer from every other

> cancer patient. The genetic drivers (oncogenes, tumor suppressor

> genes) of cancer are NOT the same for everyone. Some patient's

> disease is of a relatively non-aggressive nature...they will

> do " better " than most patients REGARDLESS of what treatment they

> choose. And some patinets will do worse than most patients

> regardless of what treatment they choose because their cancer has a

> more aggressive bent. We may not like it, but the fact is there

> seems MUCH to do with cancer and the course of disease which is

> completely beyond our control. Having accepted this, my philosophy

> has always been, " I want to live as well as possible, for as long

as

> possible " . My treatment options will always attempt to maximize

> QUALITY of life over quantity. I do not value hospital time

> and time on the ventilator or other invasive techniques if there is

> little or no hope of recovery following the sacrifice. And I think

> that most caregivers, even if not thinking along these lines while

> their loved one is alive, eventually come to the same conclusion

when

> retrospectively " looking backwards " following their loved one's

> death.

>

> For " late " stage IVs (and by this, I mean stage IVs who have done

and

> progressed on all of the recommended chemos, multiple oncologists

at

> different institutions seem to have run out of treatment choices),

> there undoubtedly comes a time when further treatment does more

harm

> than good. Actually, I suspect quite a few " late " stage IVs have

had

> their lives shortened rather than extended by insisting on

treatment

> when it was detrimental. So apparently do many oncologists - see

>

> http://bmj.bmjjournals.com/cgi/content/full/322/7297/1267/a

>

> [snip]

> Many patients with cancer receive chemotherapy at the end of life,

> even if their kind of cancer is known to be unresponsive to the

> drugs, according to a study reported at the recent annual meeting

of

> the American Society of Clinical Oncologists held in San Francisco.

> The finding " strongly suggests overuse of chemotherapy at the end

of

> life, " lead author Dr Ezekiel Emanuel, chairman of the department

of

> clinical bioethics at the US National Institutes of Health, told

> delegates. " Many are concerned with the quality of end of life care

> and specifically that patients should not be overtreated with

> ineffective therapies that won't improve their quality of life, " he

> said

>

> Of course, recognizing when one is in such a situation may not

always

> be easy.

>

> I have a lot of references in the " Death and Dying " part of the

LINKS

> section http://tinyurl.com/zje0 which look further into many of the

> issues talked about here....and some that weren't (but should have

> been) because this post is already way too long! Death is a

natural

> part of life, but fear of death drives many decisions we make

during

> the course of late stage cancer. As such, it is worth looking at

> more closely. I have personally found that doing this has lessened

> my own fear, and feel that it has helped me make better decisions

> regarding my own treatment.

>

> Some of the ones I recommend the most are:

>

> Hospice Net - great collection of articles for both patients and

> caregivers

> http://www.hospicenet.org/

>

> Arlene Harder - Facing the End of Life Together

> http://www.learningplaceonline.com/stages/together-intro.htm

>

> Arlene Harder - Spirituality (non-denominational, not associated

with

> any organized religion)

> http://www.learningplaceonline.com/spirit-intro.htm

>

> Crossing the Creek - by hospice nurse Holmes

> http://crossingthecreek.com/

>

> Short stories about Death and Dying

> http://crossingthecreek.com/finaljourney/

>

> Dying Patients who Acknowledge Terminal Prognosis Less Depressed

> http://www.annieappleseedproject.org/studonterpat.html

>

> To Flee Or Not to Flee: The Problem of Denial When Dying

> http://www.cancerlynx.com/denial.html

>

> Dying Words: How Should Doctors Deliver Bad News?

> http://www.newyorker.com/fact/content/?021028fa_fact#top

>

> Widow Net - Main site

> http://www.fortnet.org/WidowNet/

>

> Widow Net - Bulletin Board

> http://www.fortnet.org/cgi-bin/ubb/ultimatebb.cgi

>

> Widow Net - New Member Introductions (many CC widows/widowers there)

> http://tinyurl.com/zji1

>

> I hope this discussion and references are of help. As with all

> things cancer related, no " right " answers, different paths for all

of

> us. I do believe that discussion of these issues is of benefit and

> will help clarify opinions/viewpoints...and will help caregivers do

> what is right for THEIR loved one when the time comes.

>

> Best Wishes to All,

>

>