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Wondering

shellyfox
Posts: 7
Joined: Jul 2010

My 80 yr old dad has stage 4 colon cancer,with metasticies to liver and mesentary and lung; he has been on chemo pretty much nonstop for a year. PET scans show an increasing ineffectiveness of the treatment. Most recent PET scan now show cancer around heart and in bones in addition to all others increasing. Wondering if its time for hospice or to restart treatments in january? any opinions?

abrub's picture
abrub
Posts: 2132
Joined: Mar 2010

I found chemo to be unbearable, and would not want to do it for the sake of longevity alone; I needed quality of life.

You need to discuss this with your father, so that his preferences may be known. Some people want life at any cost. Others want quality only.

If chemo is nothing more than a nuisance to him, then he may want to continue. If the side effects are extreme, he may want to be free of chemo to enjoy what time he has left.

shellyfox
Posts: 7
Joined: Jul 2010

thank you abrub, i appreciate your candor... and i agree with you. Dr appears to be pressuring dad to keep doing chemo despite all the bad side effects

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

A couple of things here....

If your dad has gone through Folfox and Folfiri, those are 2 of the biggest drugs that we can throw against our cancer. If he is not showing response and showing progression as you say, then there is Flouracil (5-fu) by IV or pill form (Xeloda). There is Avastin, which is a drug that chokes off blood supply to the tumor, but is more effective when combined with the 2 majors I mentioned above. It can be given alone, but is usually doubled with the other 2 to make a bigger punch.

After that, if he were a KRAS wild, he would be eligible for Erbitux or Vecitibix, which some folks have had success with. He would need to be tested for KRAS - he will be "wild" which means he can do those - or he will be "mutant", which means that he cannot do them as they would then cause more harm than they worth, due to drug toxicity.

As far as resuming treatments in January, that's another 2 months down the road and if chemo is ineffective at this point, there's no reason thinking he will have the kind of response he needs to have to knock this cancer back down, because it will be constantly progressing and in a couple more months, restarting a program that is not working today won't be any easier then.

With regards to his doctor 'pressuring' him to stay on chemo. This does happen. Chemo is a big business and is a huge cash cow for the medical industry. Given your dad's age, the doc could continue to throttle that chemo in him and charge accordingly...the insurance would pay.

When I first got started, I was under this guy who was basically running a "geriatric practice." Most of his patients were elderly and I was one of the youngest patients in the practice. I was about 43 then and most folks were in their late 60's and 70's. One guy I remember was like 88 or something like that.

Their mission for the geriatric patient was to just give chemo and wait it out; they had no intention of trying for anything curative - just give the patient chemo - took the money at the register - and waited for the person to pass.

I subsequently left that practice, but the memory stuck with me. Those types of operations have the green light for bloodwork, labs, CT and PET scans and chemo. It's just easy money for the facility and the insurance just pays. They are making money hand over fist.

I know that I've done chemo off and on along with many other procedures for the last 7 something years. I just finished up another year's worth of stuff a few months ago, right before my 50th birthday.

I know how I was feeling and what effects it has had on me all of this time. At the end, I was contemplating stopping treatment because I had lost all of the quality out of my life - all of it. The treatments were worse than the prospect of death to me.

I wrote about this in a book I'm writing about the cancer experience. The question I posed was “Is there a case where living would be worse than dying?”

Here's a part of the chapter I'm writing now that may be of benefit for you and your dad to consider:

Excerpt from Chapter XV:

Life is interaction through our senses: Smell, Taste, Touch, Sight and Sound.

Without these key ingredients then where is the life? By my definition, without these qualities available to some degree at least, all that I would be left with is an existence – and that’s not going to be enough – for me.

All of which leads me to this next point.

If the treatments have worn us out to the point where we are not totally incapacitated, but still have a little gas left in the tank, should we continue on to fight? Or should we take the brave stance with a bold new approach to try something different? Do we measure our lives by the days on the calendar? Or do we indulge ourselves with the tapestries and textures of this life, while we still have that last gasp in us?

If the inevitable were to befall any one of us, doesn’t it behoove us to finally reach that acceptance in our lives where we choose to spend whatever remaining time that we have with our loved ones doing what we choose, rather than squandering that quality time in the fight when all hope and chance have ‘really’ been removed?

These are deep and thoughtful questions to be sure. I suppose the real answers can only come when each one of us finally stands at that crossroad. And then we have to make that decision.

BREAK - End of Excerpt

Calling hospice and talking to them now also might get you ahead of things if it comes down to that. You will have the time to digest the information and not be up against the wall by waiting to look into this option. I would rather have it all lined up with a plan to execute, rather than scrambling later if things become more dire.

I'm sorry to hear about all of this. I hope that some of this info can help you.

-Craig

shellyfox
Posts: 7
Joined: Jul 2010

i do so appreciate your insight, particularly the bit about some oncology practices being in it for "the money". Dad did the full Folfox(with the oxy and avastin) for 5 treatments before he just got too sick from the side effects, then went on avastin only for like 10 treatments... then restarted the full folfox (with oxy and avastatin) till side effects were too much (after 2 treatments) then went on folfox/avastin WITHOUT the oxy for a good 6 months, all this time the cancer was sort of held in check although it spread.
Because of the spread, dr put him back on the Folfox/avastin + oxy and he had to keep "dialing back" the dosage because of side effects....... he had 12 treatments on this higher regime but the recent PET sdcan showed an increase in number and metabolic activity of lesions throughout lungs, liver, mesentary, heart region and now bone (sternum).

The practice has their own lab and CT scan and is associated with the PET scan people

In my mind enough is enough considering his age,k the extensiveness of the spread, and the trouble with side effects......... but the dr keeps saying we can try some more stuff. By Jan, given the rate of his progression, it will be so advanced that i dont think they could get it under control.

It just peeves me to all end to keep giving my Dad what i think is false hope instead of redirrecting him to face the remaining time with dignity and enjoyment of the time left.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Shelly,

Your last line about false hope struck me this morning. I also write about that as well. Some folks cling to it and hold on to tight. For me, I don't like false hope because it's just that - false. Once I learn the truth, how can I hope against that?

And the last chapter I'm in is bringing up this subject we're talking about. When do we raise the white flag? When do we stop the fight and spend the time doing something else besides sitting in endless waiting rooms and infusion centers and the like?

These are tough questions and I stand firmly behind supporting which ever way the patient wants to go? If they want to keep fighting - or call it a day - I'm with them. Since we are given one life, it is the patient's fundamental right to decide what path they want to choose.

There is Folfir that looks to be available. Folfox did not work as you say. But, Folfiri, is the combination of Irinotecan - Leucovorin - 5fu by pump or perhaps by pill as Xeloda.

These might slow the flow, but the drug is pretty harsh with some nasty side effects; though some folks do well with it - but they are far younger than 80 I would add.

If you want to read some of the things I've mentioned to your dad, please do so - it might help him with his decisions.

I feel from talking to you that you have reached some conclusions and I must tell you that you are right on target with your thought process. You've got a good handle on the situation.

I'll leave you with one more thought.

One of my oncs gave me an analogy of cancer that has really helped me. He told me that cancer was like a house fire. If one room is burning, we can control that - but if the whole house is on fire, they cannot get that under control.

My dad is now 83 and he told me seven years ago when I first got cancer that he would never do what I have had to go through to survive, based on his age (76 at the time). Of course, I told him that was easy to say, but in the end, we never know what we will say or do when the actual moment is at hand.

I wish you guys the best on whichever way you decide to go. If I can be of any help, contact me here and I'll see what I can do.

-Craig

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Tough question. You might inquire about your father trying Avastin with the pills Xeloda and see how he tolerates those. I had no bad side affects from either of those, although I know quite a few who did. But if your onc thinks this would be a good combo, it's worth the try especially if he tolerates it well.
And as Alice said, other then that, it's time for a sit down so you know exactly what your father wants to do, he's 80 years old which means he can do what ever he wants to do, no matter what the onc wants. (I used to tell this to my mother all the time, she'd say she wanted to do something, but someone (like a brother or sister of mine) would tell her she shouldn't, I'd always say, Mom your "blank" years old (I started telling her this when she was 75, she lived until 90)do whatever you WANT TO DO.
Hope this helps,
Winter Marie

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