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#1 Mar 08 2006 at 4:46 PM Rating: Good
Ok very quickly, my father was diagnosed with terminal small cell lung cancer last March at age 60. He has just finished up another Chemotherapy session back in February.

Since then the cancer has returned and spread rapidly. Chemotherapy is no longer an option at this point. He met the criteria to be put into a clinical trial on two new medicines, Irinotecan and Paclitaxel.

Has anyone heard of these or had any experiences involving either of these treatments? The information the oncologist is giving us is extremely sketchy. He is telling us that he has 3-4 months left and that these treatments do not have a high chance of success.

#4 Mar 08 2006 at 4:53 PM Rating: Good
Thanks Angsty. I've been trying to find information that collaborates but everything I have read so far seems to contradict everything else. It's f[black][/black]ucking frustrating.
#6 Mar 08 2006 at 5:03 PM Rating: Good
I'd take him to Disney World, then bring him to Europe for a road trip. Make sure he gets a chance to ride a motorcycle sans-helmet.

Have him try whatever drugs suit his fancy to try. Rent a lamborghini for a day and take it out on the autobahn. Hire a room of Japanese call girls to go to town on him.


Sounds like his number is up. Make him enjoy the last few months until the pain gets unbearable, then schedule a sky-jump over a field where friends and relatives form out some tear-jerking message about loving the guy. Fu[Antiquewhite][/Antiquewhite]ck the medicine, you can't run from death, so you might as well enjoy life.

That's what you should do.






Edited, Wed Mar 8 17:08:57 2006 by Elderon
#8 Mar 08 2006 at 5:16 PM Rating: Excellent
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It really depends on what you mean by success. The chance of a cure is very small, as you know. However, if they can shrink the growth or even hold it steady, that's a measure of success.

I'm reading that this combination is showing between 19-58% success in advanced small-cell lung cancer, by those standards, with about 13% survival over two years.

The better news is that they seem to be fairly well tolerated by patients - so your likely concern (are we making the last months of a dying man's life worse purely for the sake of extending it?) might be eased to know that.

Good luck to your family.
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#9 Mar 08 2006 at 5:17 PM Rating: Excellent
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So sorry to hear the news Buff.

As it's small cell, and by 'spread' I assume you mean it's spread to other sites than the lungs.

In considering the two trials, it's worth bearing in mind the potential advantages (highly limited from the information you've posted) against the disadvantages of side effects.

With Irinotecan there can be psychotropic effects - (anxiety and panic attacks, headaches and chest pain to name a few).

With Paclitaxel they're less challenging (nausea, aching joints etc.)

Neither of them claim any 'miracle cure' status for late-stage cancers I'm afraid.

My honest opinion is that your main priority should be to work with his Oncologist to make sure he has a robust Pain Management Regime in place. In my experience it's not unusual for this to lack detail and attention, but it's really vital.

With Secondary Metastases, and the primary diagnosis, the prognosis isn't positive in terms of length of life. If that is the case, it's very difficult, but the kindest thing is to put energy into the quality, rather than the length of life.


Ask your Oncologist questions about pain management. Opiates, usually Methadone Sulphate Tablets (MSTs) are often the favored option and are highly effective, but do mean the patient can spend a great deal of time 'zonked'. I know that where patients and their family have acknowledged the finality of the situation, they often seek alternative pain management options that allow them to be more aware during the final days with their loved ones. This sometimes includes complementary medicine as well as traditional medicine. The options may be limited depending on your Father's specific condition, but all Oncologists I work with are happy to work with the patient and family who take an interest in the various options.

Another factor to talk through with your Father and the family, if his condition is terminal, is his preference about where he would like to die. A huge number of people I've worked have chosen to pass away at home with their loved ones rather than in an impersonal hospital setting. This isn't always an available option depending on the intensity of the care he needs, but if you're able to face that conversation, it can make a big difference to how you all cope with the situation, now, and in the long term.

A "half-way house" option is a Hospice, but I plead ignorance about their availability in the US.

I'm so sorry that the news from your Oncologist isn't good, and I hope you don't mind me being as frank as I have, but the advice is based on working with many people facing the circumstances you're in. I do hope things go as well as they can for you and your family.

Now I need to redeem my reputation as a cold and insensitive ******* so I'll find some other threads to flame people.

____________________________
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#10 Mar 08 2006 at 5:18 PM Rating: Good
Samira wrote:
(are we making the last months of a dying man's life worse purely for the sake of extending it?)


QFT.
#11 Mar 08 2006 at 5:25 PM Rating: Excellent
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Hospices are certainly more widely available than ever before in the U.S. If the AIDS crisis taught us nothing else, it taught us the value of hospice care.

____________________________
In a time of universal deceit, telling the truth is a revolutionary act.

#12 Mar 08 2006 at 5:35 PM Rating: Good
Quote:
(are we making the last months of a dying man's life worse purely for the sake of extending it?)


This is the prime thing that I am worried about. Everything I have read so far makes it look like Irinotecan has some fairly horrid side effects. He feels fine right now which is the worst part. The Paclitaxel doesn't seem to have too mnay negative effects from what I have read luckily.

He feels fine and now he is going to put himself into this and I'm not going to kid myself, he's going to be very sick. We have already gotten all of his affairs in order, which was a very large concern of his when he was first diagnosed.

In the past his pain management consisted of Oxycodon as well as a few others(the names have escaped me, but I had never heard of them before) He does not want to go to a hospice, should it come down to that.

I'll be taking him tomorrow to his first session. I'm told it can take anywhere from 4-7 hours. While he is undergoing it I will be speaking with his oncologist as well as the head of the trial, apparently she likes to sit down with the families of patients and explain all of the details the first session.
#13 Mar 08 2006 at 5:40 PM Rating: Excellent
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Buffyisagoddess the Quick wrote:
I'll be taking him tomorrow to his first session. I'm told it can take anywhere from 4-7 hours. While he is undergoing it I will be speaking with his oncologist as well as the head of the trial, apparently she likes to sit down with the families of patients and explain all of the details the first session.
Good Luck

Make sure you ask the Oncologist (and your Dad) all the questions buzzing around your head.

I'd really recommend making a list of questions today so they don't go out of your head. Might sound a bit bureaucratic, but everyone I know (me included) leaves these consultations and spends the next few hours worrying about all the things they didn't ask.

Edited to add:

One question I'd ask is "Is this an Open, or Double Blind Trial?" If it's a Blind or Double Blind Trial, your father may not be given the real drug, but a harmless placebo to check whether the real drug has a better effect than giving him an innocuous sugar-pill.

Edited, Wed Mar 8 17:44:34 2006 by Nobby
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#14 Mar 08 2006 at 5:48 PM Rating: Excellent
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Sorry to hear this Buffy. I'm only echoing everyone elses statement that no matter what happens, the thing to keep focused on is the quality of his life. While you act strong in front of him, dont forget sometimes youre going to need a shoulder to cry on as well. I hope you have someone like that. What you all have been and will be going through is very tough. My thoughts are with you and yours
#15 Mar 08 2006 at 5:50 PM Rating: Good
I didn't even think about asking that Nobby. I just assumed that they would give him the real thing. Thanks for all the well wishes. We'll see what happens tomorrow.
#16 Mar 08 2006 at 5:55 PM Rating: Good
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Buffyisagoddess the Quick wrote:
Quote:
(are we making the last months of a dying man's life worse purely for the sake of extending it?)


This is the prime thing that I am worried about. Everything I have read so far makes it look like Irinotecan has some fairly horrid side effects. He feels fine right now which is the worst part. The Paclitaxel doesn't seem to have too mnay negative effects from what I have read luckily.

He feels fine and now he is going to put himself into this and I'm not going to kid myself, he's going to be very sick. We have already gotten all of his affairs in order, which was a very large concern of his when he was first diagnosed.

In the past his pain management consisted of Oxycodon as well as a few others(the names have escaped me, but I had never heard of them before) He does not want to go to a hospice, should it come down to that.

I'll be taking him tomorrow to his first session. I'm told it can take anywhere from 4-7 hours. While he is undergoing it I will be speaking with his oncologist as well as the head of the trial, apparently she likes to sit down with the families of patients and explain all of the details the first session.

I'm so sorry. I had an uncle die from pancreatic cancer and the last days were horrible. I have no advice other than spending as much time as you can with him, and be as informed as you can be. Also, make sure your support system is strong. Hope for the best, but prepare for the worst. I sat down with my uncle and looked through photographs, got some anecdotes about my father, and made sure I told him he was like my second dad excpt better, because he did all the things with us that my father was too absent-minded to do. I know it's important to be involved, but don't let the disease/treatment get in the way of the moments that you need to spend with him.
#17 Mar 08 2006 at 6:02 PM Rating: Good
Unfortunately I am the support system. My mother can barely speak about it without breaking down in tears, and my sister is the same way.

When he was first diagnosed he asked me to get his affairs in order because he knew I wouldn't get upset in front of them. So basically I get stuck being the rock that shows no emotion while all of this is going on. My girlfriend is the only one I really go to when things get too hard.

My father even told me at the very beginning that he knew what he was asking of me was unfair, but these things all needed done. I was the one who signed his DNR form against the wishes of my mother and sister and extended family. That essentially blackballed me from the family for about five months until my girl convinced everyone to sit down and discuss it.

So unfortunately for my whole family, I am the support system, which is extremely difficult at times.
#18 Mar 08 2006 at 6:11 PM Rating: Good
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Nobby wrote:
So sorry to hear the news Buff.

As it's small cell, and by 'spread' I assume you mean it's spread to other sites than the lungs.

In considering the two trials, it's worth bearing in mind the potential advantages (highly limited from the information you've posted) against the disadvantages of side effects.

With Irinotecan there can be psychotropic effects - (anxiety and panic attacks, headaches and chest pain to name a few).

With Paclitaxel they're less challenging (nausea, aching joints etc.)

Neither of them claim any 'miracle cure' status for late-stage cancers I'm afraid.

My honest opinion is that your main priority should be to work with his Oncologist to make sure he has a robust Pain Management Regime in place. In my experience it's not unusual for this to lack detail and attention, but it's really vital.

With Secondary Metastases, and the primary diagnosis, the prognosis isn't positive in terms of length of life. If that is the case, it's very difficult, but the kindest thing is to put energy into the quality, rather than the length of life.


Ask your Oncologist questions about pain management. Opiates, usually Methadone Sulphate Tablets (MSTs) are often the favored option and are highly effective, but do mean the patient can spend a great deal of time 'zonked'. I know that where patients and their family have acknowledged the finality of the situation, they often seek alternative pain management options that allow them to be more aware during the final days with their loved ones. This sometimes includes complementary medicine as well as traditional medicine. The options may be limited depending on your Father's specific condition, but all Oncologists I work with are happy to work with the patient and family who take an interest in the various options.

Another factor to talk through with your Father and the family, if his condition is terminal, is his preference about where he would like to die. A huge number of people I've worked have chosen to pass away at home with their loved ones rather than in an impersonal hospital setting. This isn't always an available option depending on the intensity of the care he needs, but if you're able to face that conversation, it can make a big difference to how you all cope with the situation, now, and in the long term.

A "half-way house" option is a Hospice, but I plead ignorance about their availability in the US.

I'm so sorry that the news from your Oncologist isn't good, and I hope you don't mind me being as frank as I have, but the advice is based on working with many people facing the circumstances you're in. I do hope things go as well as they can for you and your family.

Now I need to redeem my reputation as a cold and insensitive ******* so I'll find some other threads to flame people.



After reading this I so understand why you got to meet the Prime Minister. Smiley: bowdown

But Buffy, I'm so sorry about your father and the heartaches your family is going through. Keeping you and your family in my thoughts and prayers during this difficult time.

Edited, Wed Mar 8 18:39:07 2006 by Thumbelyna
#19 Mar 08 2006 at 6:12 PM Rating: Good
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Buffyisagoddess the Quick wrote:
Unfortunately I am the support system. My mother can barely speak about it without breaking down in tears, and my sister is the same way.

When he was first diagnosed he asked me to get his affairs in order because he knew I wouldn't get upset in front of them. So basically I get stuck being the rock that shows no emotion while all of this is going on. My girlfriend is the only one I really go to when things get too hard.

My father even told me at the very beginning that he knew what he was asking of me was unfair, but these things all needed done. I was the one who signed his DNR form against the wishes of my mother and sister and extended family. That essentially blackballed me from the family for about five months until my girl convinced everyone to sit down and discuss it.

So unfortunately for my whole family, I am the support system, which is extremely difficult at times.

I meant the support system for you. The girlfriend is a start, but if you have someone else you can talk to, a friend or a grief counselor or a family group that deals specifically with cancer, even better. Things will always need to be done, but you won't be the one doing them if you don't make sure you're at your emotional, physical, and mental best. Make it another item on your list.
#20 Mar 08 2006 at 6:13 PM Rating: Good
Ministry of Silly Cnuts
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Thumbelyna the Hand wrote:
After reading this I so understand why you got to meet the Prime Minister. Smiley: bowdown
GFY

Now I feel better
____________________________
"I started out with nothin' and I still got most of it left" - Seasick Steve
#21 Mar 08 2006 at 6:49 PM Rating: Good
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Nobby's advice is right on the money. Flea is right too. You're going to need a shoulder from time to time too.

It sounds like you already know this, but let the final decisions be up to your father regarding treatments. He sounds like an intelligent and reasonable man. If, at some point, he feels the treatments are robbing him of quality of life and wants to discontinue, that's his call to make, and nobody else's. If he wants to try every option available, likewise, that's his call.

I'm sorry you're going through this. I know (as I'm sure many others here do) from experience how difficult it is.
#22 Mar 08 2006 at 6:50 PM Rating: Good
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Nobby wrote:
Thumbelyna the Hand wrote:
After reading this I so understand why you got to meet the Prime Minister. Smiley: bowdown
GFY

Now I feel better


Glad I could help by GFM'ing for ya.
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