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#58073 04-09-2006 03:09 PM
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I wish it were as simple (in my experience) as Gail states it to be, that people with similar treatments respond with similar problems, or that those with positive attitudes (according to her nurses) generally do better. I find that contrary to reason, and what we know scientifically. If all it took were a positive attitude to have a better outcomes or fewer side effects, there are many friends no longer with us that I would still have around, and some of us who have survived to have done so with far fewer complications in the process. Some I know had unbelievable attitudes, were fighters, some of strong faith or of strong character, all positive in their expectations, yet are no longer here with us, or others (if survivors) spent many months longer in complication related treatment. One thing that can be said about people with a positive outlook from a clinical perspective is that they are usually more compliant with treatment protocols, and self care issues such as oral care, trismus prevention techniques, nutrition, etc. But compliance with complication preventing protocols definately does not yield fewer complications, this idea completely negates the fact that we are indeed biologically unique, and what works for one person will not work for another. Our body's response to the trauma of radiation as only one example, can be highly unique, and the degree of mucositis varies greatly in people getting the same cgy's of radiation. That has nothing to do with compliance, attitude or any other subjective issue, it is a biological difference. Does a great attitude allow some people to tolerate the SAME degree of discomfort with out complaint...definately. That could be misinturpreted by a caregiver or nurse as "fewer complications."

As to everyone having the same response to a particular treatment, if that were true, Gleevec, Irrissa, or other drugs which were highly effective in small groups of individuals, but not in others, would show consistent outcomes - not wide varieties of responses. Even in radiation treatments, some patients like Gary have a minimum of long-term consequences and others have chronic long-term issues with the same treatments. This forum and its participants find "commonalities" in their experiences and that is what makes the discussions of value. Commonalities can be clear-cut evidence based, or subjective, and either way they do not apply to every patient. That would deny that we are all genetically similar yet at the same time completely different. I do not doubt that Gail's husband can credit positive attitude with many reduced problems, He definatley worked every possible angle to minimize and overcome complications and side effects, this to no small extent was aided by having a tenatious caregiver (Gail), who wroked hard to search for the right questions and answers, and was an active part of getting her partner though the process.

Cancer does not lend itself to gross generalizations, whether they be by a patient, or a nurse or doctor at a major cancer center. I think that people need to consider that what professionals say, sometimes reflects what their subjective impressions are, or their isolated clinical experience leads them to believe. That may or may not be in alignment with what multi-center long-term standardized studies show.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#58074 04-09-2006 03:15 PM
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I stand corrected - 5% positive experience.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#58075 04-10-2006 03:13 AM
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thank you for that post, Brian. FWIW, Gail, I had a very positive attitude all through (and before and after)treatment. I complied with everything I was told to do and even tried some extra things like gargling with aloe until it burned unbelievably. The Radiation Oncology and Medical oncology nurses and technicians thought, and told me, I got through the treatment amazingly well--but this really didn't have to do with my physical state (I ended up in the hospital at the end neutropenic and running a fever after all), it had to do with the fact that I was very persistent, completely complaint, kept taking amifostine even though it made me vomit almost every day, didn't cry, didn't talk about quitting treatment or show up late, etc.(in fact was pushy about getting them to treat me on time because it was important for the amifostine to work right).

And despite all that I have had a long slow recovery with major complications in terms of swallowing. And am sitting here almost a year after I started treatment hoping that more risky surgery will help me to swallow well enough just to get off the PEG tube (I have very little hope that I'll be able to eat well enough to travel or eat out easily if at all for the rest of my life). To read someone suggesting that somehow this negative outcome is related to my attitude not being positive enough is, quite honestly, somehwat infuriating. It's frustrating enough to me that I'm in this spot from the treatment I got to start with! I can just imagine how it would feel to someone who fought well and hard through treatment and then has suffered a recurrence.

Anyway, I've seen too much of the reverse. My Dad, when he had cancer 22 years ago, was sure it was going to kill him and had a horrible attitude both in terms of optimism and in terms of compliance (fortunately he ahd my mom riding herd on him), and yet he has managed to be quite a long term survivor. I've read about several patients here on this board who sounded like they had horrible attitudes and they bounced back much more quickly than I did with my sureness that I would lick this thing and recover quickly.

I agree that placebo effects are real and shouldn't be dismissed but I think it's quite a leap to assumoing that because Barry or anyone else recovered quickly it is primarily due to their positive attitude and expectations or that people who don;'t recover quickly are somehow deficient in this regard.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#58076 04-10-2006 03:57 AM
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I wanted to add that I strongly agree with Brian's thought that one thing my positive attitude did make a difference with was that I tolerated pain and discomfort without as much complaint as someone with a less optimistic attitude. This has been true for me in other medical situations I've been in too, before the cancer. In the last 5 years, there have been about 4 separate occassions when a doctor (different one each time) has said to me "I'm really surprised you aren't in more pain" and I've always thought that what the doctor really meant was "I'm really surpised you aren't complaining more about the pain you're in" because I WAS in pain at each of those times. But I have practiced mindfulness meditation on and off for about 7 years and I think that creates a different response to pain and discomfort sometimes (sometimes. I won't say that I've never been just crazy with pain because I have).

But I don't think that optimism, or any other psychological variable I had going for me, really meant I experienced less discomfort, I just reacted to it differently.


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#58077 04-10-2006 06:06 AM
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This subject is an interesting paradox. They have actually been doing some science in this area, not only around having positive attitudes but around prayer and haven't really found a correlation between doing these things and a better outcome. For instance, at my church they almost treat me like a "hero" because I was one of the FEW that they prayed for that actually survived (someone candidly admitted that to me one day).

In some ways there is a DANGER to this mindset as some might feel their situation even more hopeless that they CAN"T have a positive attitude because of having a life threatening disease, having the sh*t kicked out of them in treatment - their relationships, sex lives and economics detroyed. NEVER again having their life back as they once knew it. Having a positive attitude is certainly something that the caregivers would like to see, but from the patients perspective it's a tougher nut to crack, especially in the last weeks of treatment when you are almost crawling into treatment every day and sleeping on the bathroom floor, curled up in a fetal position, so you don't puke in the bed or the hallway. Sometimes it's a better and more real approach, to say it's ok to be angry, depressed, sick and tired. Did my positive attitude, marching in there every day like a trooper help my survival - I doubt it - but it DID help the techs with the worst job in the world.

Acceptance is the toughest stage in the greiving process.

As we all respond differently to treatment - we all have different coping mechanisms. If we weren't different emotionally, then we might as well be clones or we could get all of our psychology from Dr. Phil.

This is another topic that will never have a resolution because of its great paradox.

(I love it when we start with aloe juice and end up with paradox) That's what makes this board so much fun - or at least blights some of the grimness.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#58078 04-10-2006 07:19 AM
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I agree, Gary. I also find it fun when we "start with aloe juice and end up with paradox"!


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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