Question re survival

What I've come to realize in my 2 1/2 years here, since my husband has been dealing with Stage 4 crc, is there does not seem to be any rhyme or reason to this disease. That has actually helped me cope a bit.  In the beginning, I was so desperate to cure him that it was a lot of pressure and worry.  Over the years, and reading so many stories, I've realized we really do not have a lot of control.  There have been folks that have done chemo for a very short time and passed away.  There are others that have done chemo for many years and are still plugging along.  Same goes with natural cures and "miracle" cures that are very expensive, outside of the US - some make it, most do not.  I wish I knew what the secret is!

I think it's your dad with cancer?  I recently lost my mom, not to cancer, but too early.  She was 68 and I talked to her every single day of my life.  It was horrible to lose her and I miss her every day.  I also know that she wouldn't want me sad and stressing.  I'm sure your dad doesn't want you stressing either.  I wouldn't be surprised if he would rather shelter you from all of the details. I know now that my mom did not tell us close to everything that was going on with her.  

But to answer your question, yes some people have been on chemo for many years.  I think Phillieg is around 10 years??

geotina said:

Girl2

I agree with everything Jen said.   If you are looking for a "miracle cure", it does not exist.   When my husband was diagnosed, his colon cancer was advanced Stage IV, about as bad as it can get.  Survival should have been 6 months or less.  Well, he responded well to chemo and he lived another 3 1/2 years, and except for the last couple weeks, he lived quite well, continued working, doing things he liked.  Yes, I knew in my heart that some day the treatment would stop working but with treatment he got an extra 3 years.  Who knows what is coming in the future with treatments in the next 3 years.   My husband was not a candidate for any type of surgery as the cancer was metastisized to his liver and both lungs so surgery was not an option from the day of diagnosis.  Every patient is different.  My husband was not on the younger side of this disease but yet he responded very well, better than those 10 years or so younger so I don't think age has much to do with it.  Take it one day at a time and enjoy time with your Dad without talking about cancer.  One thing I learned was that my George so enjoyed time and conversations that did not center on his cancer.  Ask your Dad questions then move on with another topic.  I wish there was some type of "miracle cure" but it simply does not exist here in the US or anywhere else.

Take care - Tina

 

It's true. Cancer seems to hit everybody differently. Some people can tolerate a lot of chemo and others can't. I had stage 3 last year and had surgery in June and they're pretty confident they got it. It was stage 3 because it had gone into 3 lymph nodes. My surgeon told me he was going to take it out and I'd never have cancer again. So far he's right. But I'll have to keep on top of it forever.

Jan

  Unfortunately what will be will be. I had an advanced ,aggressive stage 3 c tumour into six nodes. My surgeon and oncologist agreed that it was too aggressive and involved too many nodes for a relatively small cancer. They both told me that I needed to get my affairs in order and do whatever was most important to me because I would die from the cancer. I had surgery , my surgeon could not be sure he got it all because it was very close to the fatty tissue where the flange joins the body. I followed that wit 48 sessions of chemo therapy, each tuesday for nearly a year, and that was it end of treatment . My surgeon kept a close eye on me and he was extremely surprised at the end of six years when he told me I was cured of that particular cancer. He advised me to remain vigilant as there certainly would be more. It is sixteen years  heading for seventeen and I am still cancer free. Ps I never did get my affairs in order. Ron.

At some point you're going to be told or will read various statistics about 5-year survival rates with X Treatment and so on. Let me help you understand why you should be a little skeptical of those stats, based on my understanding. As I understand it, most of the survival/recurrence rate statistics are actually calculated as moving averages, and recalculated every few years. The statisticians look at all cases over a 10 to 15 year period prior to their work and calculate the "typical" result. I don't know exactly which statistical measure they use (might be the mean, might be a median, etc.) but there's something that affects them that most people don't think about, and that's the changes in treatment, diagnosis, and support mechanisms over time. 

Here's how I explained it to someone who just joined my cancer support group tonight. Let's say you want to say what the average income is for a fireman or a teacher or some other profession, but you are working with data that goes back to 1980. So you have thousands of salaries in your pool to calculate from, but some of those salaries are from 1980 and some are from 2010. There has been a lot of inflation over those years, and that means that the average salary that people in these professions earned over that time was much lower than it would be today. Think trying to predict next year's salary from an average that includes some years at $30,000 and some years closer to $50,000.  And the longer back you go, the lower the overall average will be. Make sense?

The same thing happens with cancer survival stats. The statisticians take their data from patients going back ten and fifteen years and produce an average for all that time. But that average today includes people who were treated with methods that are no longer used because new and better ones have been developed. A lot more of those people lasted much less time after treatment than those who got the more up-to-date treatments. Your father is getting the current standard treatment, which is much more effective and carries much lower risks than treatments that were in use at the beginning of the period for which the statistics are calculated.

Beyond that, no one person is ever going to respond at precisely the average of all patients. He's an individual with his own strengths and resilience. He has you in his corner - and that's no small thing.

Being old, I cannot remember who first said this: "there are lies, damn liles, and statistics!"  LOL

In my case, chemo (and radiation plus surgery) eliminated my tumor and cancer cells, it's very much luck of the draw in my opinion.  All you can do is try.  I am now two years out cancer free. My friend Barb did chemo for many years religiously, she ate healthier and she biked all the time and sometimes it worked but then it would come back and the chemo just stopped working and she was exhausted and in pain and decided to let go.  All you can do is try.  So far my result has been a good one and I consider myself very lucky to have gotten this far and I hope to be able to keep going. M uch of cancer is a guessing game, you just have to try different things to see what works.  I've been eating a lot more healthy with organics and a lot less junk.  I am very conscious that not doing these things could work or they could not work.  All I can keep doing is trying.  If chemo works, a person can survive a really long time or until natural death. 

As far as the weight loss, is there anything that you have discussed with the doctor as far as ideas, maybe a nutritionist? They may be able to suggest ways to at least remain stable and not lose any more.  Perhaps through special shakes although diarrhea becomes an issue with liquids.   I never had the weightloss issue and 1 stone (14 pounds in the US) when you are only 8 stones (112 pounds US) is a lot to lose.  At one point I did have to drink protein drinks because I was not able to eat for two weeks after surgery.  Definitely worth a conversation with a nutritionist.

Girl2 said:

Thx Helen . They have advised

Thx Helen . They have advised nutritional

drinks but he will not have them that's the problem . I just can't see him

lose weight. I do a lot of google and I suppose that does not

help . On there I read that even with chemo survival is like 1 year , is that true ?

Only God knows what amount of survival time we have!!! I was 77 when dxed stage2/3.  Will be 83 in a couple weeks. NED 5 years and counting.  Good luck to us all.

Girl2 said:

Thx Helen . They have advised

Thx Helen . They have advised nutritional

drinks but he will not have them that's the problem . I just can't see him

lose weight. I do a lot of google and I suppose that does not

help . On there I read that even with chemo survival is like 1 year , is that true ?

I was diagnosed Stage IV colon cancer on Feb 2, 2010, so that's a lot longer then one year survival rate with chemo, it's over 5, there are others over 8 years with chemo.  Can't really look at stats And expect any accuracy.

Winter Marie

Girl2 said:

Thx Helen . They have advised

Thx Helen . They have advised nutritional

drinks but he will not have them that's the problem . I just can't see him

lose weight. I do a lot of google and I suppose that does not

help . On there I read that even with chemo survival is like 1 year , is that true ?

Will he eat dessert-like drinks? Here we use the term milkshake to mean a mixture of ice cream, milk, and a flavoring like chocolate syrup. Not sure what term you might use.

I'm thinking you could turn a nutritional drink into a much thicker and more enjoyable experience by adding ice cream and maybe even blending it up a bit to mix in the ice cream. This would result in a thicker, sweeter and probably much more enjoyable beverage that would help him regain some of that weight. If he likes it, then you could make one as his dessert, and consider making it available only after he eats a bit of a more traditional meal.

LivinginNH said:

A little New England humor... ;D

John, you're obviously not from New England because you've just described a Frappe! 

This is how we tell if someone is a "foreigner" - here's a “Who’s on first” kind re-creation of what we might hear at the ice cream window... 

Customer: “I’d like a chocolate milkshake, please.”
Me: “Do you mean a milkshake or a frappe?”
Customer: “I mean a milkshake – with ice cream.”
Me: “If you want ice cream, you want a frappe. A milkshake just has milk and syrup.”
Customer with a very confused look on their face:  “Uhm…I’d like whatever has the ice cream in it please...”  

And of course, if you order a dish of ice cream, you need to order it with Jimmies...never sprinkles!  ;D

In fact, I am from New England but in the part of Maine where I grew up, we did not use the term frappe. I had several relatives who lived in southern New Hampshire, and they all used the term frappe and I'm pretty sure that my first-ever such delight was a frappe in New Hampshire. Linguistically this is especially odd because frappe is a French word and Maine has several very large communities of French-Canadian immigrants (my father having grownin one, in fact). You'd think that the French-Canadian influence would have carried over, but it didn't.

On the other hand, we always used the word "jimmies" for the little chocolate things that you sprinkled on ice cream.