Questions

When I was originally diagnosed with stage IV colon cancer, with mets to to liver, ovaries, and lymph nodes my oncologist told me that my cancer was treatable but not curable and that I shouldn't worry about dying anytime soon, that I had a disease and could live with it. They removed all the cancer in my colon, lymph nodes, and my ovaries and I've been on chemo for 4 months now and the liver mets have stopped shrinking. Was he wrong in telling me that I would (not could) survive with cancer? I read about all these survivors, but I feel like I'm loosing the battle if the drugs that are supposed to be 80% effective on most first round chemo patients suddenly stops working midway through treatments. (My tumors shrank after the first two months, but the second CT scan showed no "significant" shrinkage and now for the first time my liver enzymes are high. Should I be worried about dying? I don't feel like I'm dying at all. Chemo's not fun, but I don't feel like my body's on a path to self destruction. The idea of not living to be 26, 27, 28, or 29 is really driving me a little crazy. 

Can I have liver surgery with 4cm and 8cm mets?

What does liver surgery entail? 

Do I move on to another chemo treatment too? Will they continue the same treatment until I've finished? Could the chemo possibly still shrink my cancer more and I'm just being impatient?

How long can a person be on chemo anyways? I can't imagine going in for treatments every 2 weeks the rest of my entire life. 

Are those survival stats real? Only 3% of stage IV colon cancer patients survive to 5 years? How many survive past that?

Exactly how many young people survive this cancer? I feel like a statistical anomaly being only 25 with this crazy disease. Everyone else is 40 and up. The chemo nurses have nicknamed me "youngling" for pete's sake. 

 HI,

   Sorry to hear what you are  going through at such a young age, my wife is 48 yrs and has being battling stage 1V colon cancer with mets to liver and lung for 7 yrs. You can live with this disease, the chemo can kill the tumors and they can show up on cat scan , but they could be dead, Has your Dr told you about CEA levels? this can determine  if your cancer is active. normal CEA leve is about 3... do you know what yours is?

 Many people are still going after 20 yrs of stage 1V cancer, there are some self helps you can do to keep going...

 One is ALWAYS ALWAYS have a positive out look and live one day at a time and get best out of that day... be determined not to worry, or give in to this disease,, Visulise  the cancer when you are getting chemo that it is killing the bad cells.  Prayer plays a big part, God is one who created you and knows your inside, again when getting chemo relax and ask him to renew your inside and get family, friends praying for you also.

  Then there is diet,, very very important,,,with my wife having this for 7 yrs I have done so much research on the body and cancer, so if you google these items it will help you..

  1/  Sugar and cancer.........

  2/ Asparagus and cancer...

  3/Tumeric and cancer....

   4/  Linseed oil and cancer...

   5/  Alkaline and acidic body...

   6/   Iron and cancer

 Make sure you keep off red meat as much as possible and processed foods... eat as many veg as you can each week.  eat lots of mixed nuts, esp  eat 1 brazil nut each day gives you selenium which your body needs.... then make sure you get a good  multi vitimin...each day you need plenty of Vit C and Vit B as these are water solubles.. that means body does not store them... and make sure you drink lots of water every day....

 If you need any more help or advice please let me know.. but keep going ..keep the faith and never give in  and laugh often as this really is good for your body ...

   God Bless you     .......Rob and Barb

Thanks so much for the advise. My CEA level is 6. About 4 months ago it was at 60 and actually my liver tumors shrank from 16cm and 12cm to 8cm and 4cm after the first 4 rounds of chemo. I recently had to go to the emergency room for severe pains in my left abdomen and the ER doctor said my liver enzymes were 258, that my liver was failing, and that after 8 rounds of chemo the tumors were the exact same size they were after the 4th round. I really panicked after that and thought the chemo had stopped working. It didn't make sense to me because just 3 days earlier my enzymes were at 30 and my CEA still is at 6. I'm waiting to see what my oncologyst says Tuesday and praying for the best. Hopefully those liver enzymes just jumped from the pancreatic attack I had. Again, thank-you for the advice I will look into everything you suggested. I want to live and anything I can do to improve my chances I'm willing to try out.

 Laura

HI LAURA,

  We will be praying for you for Tuesday, but please remember that you can beat this and live, we know of so many  people that have being giving bad news BUT  they defied the odds, and my wife is one of them. Take one day at a time and when you wake up tell your self this...... This is the first day of the rest day of your life,,,, We have learnt to change our thought pattern and get best out of each day and also Pray a lot and let God deal with the cancer as he is the one who created us, combine that with medical expertise, and diet and positive outlook..Now thats a powerful combination..Watch as many funny films as you can, read as many books on humour,,, as its a scientific fact the Laughter IS good medicine..... Let us know how it goes on Tuesday and we are here for you and are with you on this journey....

    Remember,,,, what ever the news  is you can change the situation as your body is amazing,,,

    God Bless You .... Best Wishes    Rob and Barb

Hello....

        I BELIVE POSTITIVE THINKING and the WILL of WANTING to LIVE .....will get you through this.  REMBER you are NOT alone......YOU CAN do this....LIVE LIFE everyday.  God Bless.

Hi Blue Eyes,

 I have a couple of answers for you.  I'm not sure where you got the 3% survival figure for 5 years for Stage 4.  The stat used to be 8%, but a recent study by MD Anderson has it up to 30%.   The average lifespan used to be 8 months, but the recent study showed that it had increased to 30 months. 

Stage 4 chemo is generally not considered curable by chemo alone.  I have read a couple of articles about "complete responders" but I think that they are few and far between. 

If you haven't gotten a second opinion, I would definitely recommend getting one.  Especially if you are being treated at a major cancer center.  They can tell you if you have any other options for the mets on your liver such as resection, RFA, Sirt Spheres, etc.  Generally if you have mets in multiple places such as lymph nodes and liver, systemic chemo is the way to go.

Unfortunately unless you have a surgical option, you are probably on chemo for the rest of your life.  My goal is to get my mets stable and then hopefully lengthen out the time between chemo to 3 or 4 weeks instead of 2.  I saw a posting on a messageboard about another Stage 4 patient who now gets chemo every 6 weeks to hold her chemo stable. 

If your first line chemo fails (mets grow not mets stable), then your onc should move you to a 2nd line.  I had Folfox and Erbitux in 2007 for Stage 3C.  I had Folfiri and Avastin in 2008 and I am now back on Folfiri and Avastin in 2009.  There are many more options today than there were just a few years ago.  Also, there are many clinical trials going on and I think the next big breakthrough is just a year or two away which means if we can use the current chemos for 2009 and 2010, we will hopefully have another option in 2011. 

 Fighting colon cancer is a marathon.  Do everything you can to give yourself the best possible chance.  Eat right, exercise when you feel strong enough, get plenty of rest, pray, visualize your cancer in your body and visualize the chemo and your white blood cells carrying it away, and finally do as much research as you can, so that you know what your options are. 

Jack

On 6/28/2009 Blu3yedangel wrote:

Thanks so much for the advise. My CEA level is 6. About 4 months ago it was at 60 and actually my liver tumors shrank from 16cm and 12cm to 8cm and 4cm after the first 4 rounds of chemo. I recently had to go to the emergency room for severe pains in my left abdomen and the ER doctor said my liver enzymes were 258, that my liver was failing, and that after 8 rounds of chemo the tumors were the exact same size they were after the 4th round. I really panicked after that and thought the chemo had stopped working. It didn't make sense to me because just 3 days earlier my enzymes were at 30 and my CEA still is at 6. I'm waiting to see what my oncologyst says Tuesday and praying for the best. Hopefully those liver enzymes just jumped from the pancreatic attack I had. Again, thank-you for the advice I will look into everything you suggested. I want to live and anything I can do to improve my chances I'm willing to try out.

 Laura

 

 

Hi Laura,

I was diagnosed with stage IV colon cancer 2 and a half years ago and my liver enzymes have been over 300 for most of that time. Size months ago they were at 850 and I must admit I did have some pain at that point but I was never told that my liver was failing - even then.

It is now back down to about 280 and I feel great so I think the doctor who told you that your liver was failing doesn't know what he is talking about!!

I think the main thing I have learned in the last 2 years is to ignore what the doctors have told me and simply go with how I feel.

Hope this helps