How to beat the beast

Look at Shea Medical center in Scottsdale.  They specialize in Colon Cancer and have a floor dedicated to it. They train Oncology Surgeons and  Nurses there also.  Dr. Zacher is their head surgeon and is a great surgeon. They also have tests on chemo drugs here.  

Also being excepted in a test drug trial is not necessarily a good thing.

Best Always,  mike

cravelife said:

Karin
Thanks for the all the

Karin

Thanks for the all the information.   We know we are in for a fight but my wife is ready and willing to do anything to be here for our daughters and to do all the things we have been planning for the last 20+ years together.   It is hard as a husband to watch your wife deal with the neuropathy from the oxiplatin, fatigue, chemo brain (as she and my kids call it) and all the other side effects.  Luckily her hair has thinned a bit but since she already had short hair it still looks great though it is a little more curly than before.   

We have been doing lots of research and have talked with many other people that have had to deal with this and other cancers.   Second opionions have been good unfortunately they don't give you much more information or hope than the other Dr's.   I think having more than 10 mets to the lungs complicates the options for ablation, radiation, and surgery.

Just have to live with the cards that God gave us. 

 

Hope everyone has a Merry Christmas and a Happy New Year.   

 

Here's a great note to everyone.   This was found in the wallet of the great Bear Bryant.   One of the greatest coaches and motivators that ever lived.  It was something that my parents believed in and helped make me sucessful in my career and stress to my daughters to make every minute count.  

 

 

The Magic Bank Account

Imagine that you had won the following *PRIZE* in a contest: Each morning your bank would deposit $86,400 in your private account for your use.

However, this prize has rules. The set of rules:

1. Everything that you didn’t spend during each day would be taken away from you.
2. You may not simply transfer money into some other account.
3. You may only spend it.
4. Each morning upon awakening, the bank opens your account with another $86,400 for that day.
5. The bank can end the game without warning; at any time it can say, “Game Over!”. It can close the account and you will not receive a new one.

What would you personally do?

You would buy anything and everything you wanted right?

Not only for yourself, but for all the people you love and care for. Even for people you don’t know, because you couldn’t possibly spend it all on yourself, right?

You would try to spend every penny, and use it all, because you knew it would be replenished in the morning, right?

ACTUALLY, This GAME is REAL …

Shocked ??? YES!

Each of us is already a winner of this *PRIZE*. We just can’t seem to see it.

The PRIZE is *TIME*

1. Each morning we awaken to receive 86,400 seconds as a gift of life.
2. And when we go to sleep at night, any remaining time is not credited to us.
3. What we haven’t used up that day is forever lost.
4. Yesterday is forever gone.
5. Each morning the account is refilled, but the bank can dissolve your account at any time without warning…

So, what will you do with your 86,400 seconds?

Those seconds are worth so much more than the same amount in dollars. Think about it and remember to enjoy every second of your life, because time races by so much quicker than you think.

So take care of yourself, be happy, love deeply and know and pursue your priorities!

Here’s wishing you a wonderful and beautiful day. Start “spending”….

“DON’T COMPLAIN ABOUT GROWING OLD, SOME PEOPLE DON’T GET THE PRIVILEGE”.

 

i just wanted to mention that there is a procedure that involves removing multiple lung mets, up to 100, I believe.  I saw someone on another forum who had this procedure done in Germany by a Dr. Rolle.

I found the following write-up about it that might prove useful:

http://www.karinaeide.com/#!lung-laser-tumor-resection-dr-rolle/c1a5m

I am not entirely clear about this, but I may have read that this is now being done in the States.  Certainly worth diggging into, I think.

My personal experience has been that getting this crap directly removed in some fashion really improves one's chance of survival.

Have you met with an experienced thoracic surgeon to talk about getting the lung spots removed?  I've found that most oncologists don't really know much about the possibiities beyond their own area of expertise.  And even amongst surgeons there is a lot of variety..I know a woman who had distant lymph nodes that most surgeons refused to remove. She finally got a "cowboy" willing to take a chance and get them out. She's not cancer-free, but she is several years past her "expiration date" and looking for the next thing to try.

Piece-meal surgery can prolong life, but you have to push through the standard approach of "systemic disease=systemic treatment only".

lilacbrroller said:

a patchwork life

HI. I am not a long-term survivor, however, I have outlived the average for my condition at diagnosis (2 years) which was about the same as your wife - primary tumor plus mets to liver and lungs. Lots of mets to liver and lungs.  I"m also (touch/knock wood) in excellent health otherwise, but I probably would win the "most mets contest" on this board if there was one.

I think it's quite rare to beat this disease with such a starting point. I've read through this forum and others, and have paid particular attention to long-term survivors' stories, and found they had several things in common. Mainly, they started out with fewer mets perhaps to only one organ (like the liver), and have been able to have surgeries.  I don't know how many in this position have been cured. some of them stay on the forum, and others leave forever, so we never know if they died or are cured and never look back.  The longest I"ve seen forum members live (with continuing active disease) has been 8-10 years, and many people die because they have chosen to stop treatments.  It seems like a hard slog, essentially being sick for 8-10 years - contstant scanning, bouts of chemo, multiple surgeries - one guy had his leg amputated to remove a bone met in his hip or something. It's not a good life, it seems from the outside. Yes, these people are alive and do get to witness graduations and family events, but at what personal cost and stress to other family members/caregivers? And to themselves? 

So until I am very sick and miserable, I am living a patchwork life, jumping from treatment to treatment, trying to extend my life in increments. Once my quality of life is so awful, I'm done and am also stopping treatments.  I'm not there yet so I do a lot of research and also use social media (ie this forum and others) to find out what others are doing. For instance, Janderson's cryoablation sounds cool. I have too many mets so I"d probably be rejected, but still, it's in the toolbox now.  There's a woman on colon club, who also posts here, named Carmen who went to Germany to have her lung mets removed.  It was partially successful, but for others it has worked really well.  You might want to seek her out and chase that treatment.

Simply following the advice of one's primary doctor is not good enough. I have a great doctor but it's not his job to surf the net and find me the best cryospecialist in the world for instance, or seek out treatment that he or his local network of partner specialists (surgeons, radiation oncologists, etc) don't provide.  He's certainly an expert and I can ask for recommendations, or if I find something promising through my own research and I can bounce it off of him and he can tell me whether it's worth pursuing.  Until it's possible to hire "cancer coordinators" who work like wedding planners (!) and do this research for us, it's up to the patient or family to hunt down all this cutting edge stuff if that's what it's going to take to extend your/her life.  And, the patient must be willing to take some risks. 

So that's where I am on the issue.  I don't undertand why some of us are walking and talking (and coaching soccer or mountain biking) with multiple mets spread everywhere, and others get one or two mets to the liver and are sick as dogs, bedridden, and die.  That confounds me, not that I am complaining about being in the first category, but just don't understand it.  Your wife sounds pretty hardy, and might just be in the first category which is overall good for her.  

Good luck and if you find a good clinical trial, or outstanding surgeon, please post/share info here on this board so we all can benefit

cheers

Karin

 

 

 

 

My sister has stage 4 Colin cancer and it has spread all over her body.  The Drs say there is nothing left they can do.  I can't give up hope.  My sister went through the chemotherapy and the radiation and that helped a bit.  I have been researching and found some natural ways to tey to fight this diseas.  You should try and read this link, I'm not sure if it will help it researching never hurt,anybody.

http://drleonardcoldwell.com/2013/11/01/stage-4-cancer-gone-with-baking-soda-treatment/comment-page-1/

I have also read vitamin c is a great way to fight this,  and I have also read about later therapy.  I have posted it below, i hope you become one of the survivors.  God bless you and your family.

Photodynamic Therapy (PDT)

Also called:

photoradiation therapy

phototherapy

photochemotherapy

Photodynamic therapy (PDT) destroys cancer cells by using a drug called a photosensitizer, which makes the cells sensitive to laser light. PDT is a fairly new procedure and was approved for use in Canada in the 1990s. It is used:

to treat tumours in the lining of some organs

to relieve blockages caused by tumours in the esophagus or lungs

PDT is usually done in stages:

the photosensitizer is given and is absorbed by all body cells but stays in cancer cells longer than in normal cells

after a period of time, the cancer cells are exposed to a low intensity laser light

the photosensitizer absorbs the light and a chemical reaction occurs that kills the cancer cells while sparing most normal cells

A range of tests may be done before PDT, depending on the area being treated. Preparations similar to endoscopic procedures or conventional surgery may be needed. The photosensitizer makes the skin and eyes sensitive to strong indoor or outdoor light (photosensitive) for 4 to 6 weeks or more after treatment, so special precautions need to be taken.

PDT may be used with other cancer treatments such as surgery, chemotherapy or radiation therapy. Tumours that regrow and start to cause problems again can be retreated with PDT.

Sorry about the situation. Dx in Aug 2006 with liver and lung mets Stage 4. Had colon surgery, 10 months of chemo, liver surgery, 4 thoracic surgeries and am still here, teaching high school, surfing and skiing. My kids were in 5th and 7th grade and I just wanted to see them graduate jr high. I made it through high school with them ( in my classes) and am very fortunate. I have had everything done at Stanford.  In no order here is what I do:

1) really keep busy doing positive things - coaching volleyball

2) eliminate as much negative stuff around me as possible

3) go to church and pary and accept all prayers

4) eat as healthy as possible but still eat meat ( mostly fish / sushi)

5) 2 aspirin a day

6) fight for surgery anytime I could

7) try to find a life outside of cancer and be OK with hating it or crying about it  sometimes

All my best. This is such an unfair beast and I know people who were long term survivors were inspirations to me early. i should be on here more often but after years, I sometimes needed a break. I read almost all posts and am happy to talk but I often don't comment. I so feel your comments about your kids.

Best

Chip