New diagnosis - please help!

My sister was diagnosed with stage IV colon cancer in June. The cancer has metastisized to the liver (inoperable too) also with 19 out of 23 lymph nodes testing positive for cancer. She is seeing a naturalpath doctor along with the oncologist for the chemo treatments with Avastin. She is doing very well. The naturalpath is costing her alot of money, but he is doing alot for her. She goes in twice a week for shots and spends most of her day preparing all natural foods, and taking ALOT of vitamins etc. Her spirits are great. Even her oncologist was very surprised how well she is looking and doing. I think she has a fighting chance between the naturalpath and her oncologist. Looking at her, you wouldn't even believe she has cancer.

I too would be very curious to hear the answers to all of your questions.

Don't give up hope. I think the reason my sister is doing so well is because she has such a great attitude and refuses to let this get her down.

Keep praying and believing.

Hi AFN,

I am stage IV also, mets to the liver and 1 to the lung. Before I began chemo, my onc thought I had 2-3 measurable tumors and hundreds of microscopic ones in my liver. It was not pretty news. Now after 5 months of chemo, he thinks all the microscopic tumors are not tumors at all, just spots on my liver that have probably been there since I was born. Of course we are keeping an eye on them, but the point is, NEVER GIVE UP!!!! If you don't like what the docs are telling you, you are doing the right thing looking for another one. Keep an eye out for Emily's response too, just as Stacy recommends. She is a wealth of wonderful information as I have slowly learned!!!!!

Keep asking those good, hard questions!!!!

Lisa P.

belinda25 said:

Hey there Anonymous,

My dad was diagnosed only 6 weeks ago with stage IV colon cancer with mets to the lungs. His surgeouns and oncologists too decided not to operate but instead went strait into chemo. He has just finished his 1st cycle of Oxaliplatin/5FU and here in Australia Avastin is not apporoved yet by my dad is part of a clinical trial that uses it. So far my dad is having more good days than bad ones. Its a long way to go yet but I can tell you that the mind is pretty powerful so a POSITIVE attitude will make a huge difference

Dont loose hope and its great to see that you are trying to find out as much as possible, you came to a great place. Everyone has helped me a lot.

Belinda

Hiya Anon.
You now have an insight into the wonderfull people here. You have come to the right place for advice and support. Unfortunately I am unable to contribute as my cancer was of a lesser staging. Nonetheless we send our luv/support and prayers to you and your afflicted family member.Kanga n Jen from OZ

Dear Ccanon,

Your request for information was well thought out, and I'm sure you will do great in navigating the complex medical arena.

I am today a 54 year old woman,who was diagnosed with a relatively slow-growing liver cancer (mets) in April 1998, and was told like most patients that it was inoperable and that nothing could be done, and that it could become aggresive and I could be dead in six months. I have managed my own medical case ever since. I read Medline scientific papers everyday; learning what new research is being done around the world, long before it reaches the clinician. That is how I find leading physicians to contact across the country. I'd suggest you go to Medscape.com sign up for their service which is for physicians not lay people. You will be able to sign up for free, listing your profession as "other". There is a Resource Page for Colorectal Cancer, where you can easily learn about the latest research findings.

As you need to act fast, I would suggest you contact surgeons first, rather than just accept the verdict of "inoperable". I flew from Boston to Los Angeles for surgery at John Wayne Cancer Institute, as there is an amazing surgeon who operates on about five livers/week. If anyone would operate, it would probably be this pioneering surgical oncologist. Just pick up your phone and call 310-449-5206 for GI surgical oncology. A quick call will let you know if there is a possibility of surgery being performed. If so, detailed records can be faxed. This process is very fast. [I had one-third of the liver, one-third of the pancreas, the spleen, and the gallbladder removed, and radiofrequency ablation performed on remaining tumors. The surgery was fabulous. I am doing great today, although there is still cancer.]

In another reply it was suggested that you contact major cancer institutes in the U.S. That is a great idea and will get you to the best experts. But remember that every expert has a narrow agenda. If every I get an answer that I don't like I just keep researching, and asking others.

Good luck in your pursuit of knowledge and health.

Lucinda

Hope
I was diagnosed with about the same, a few more mets then your close family member and told the same thing, or thereabouts, told to go home and enjoy the rest of my time on this earth.
Was offered hospice while in the hospital two days after my diagnosis. As to why they don't recommend the chemo, who knows? Had I listened I probably wouldn't be here right now. They told me rather then suffer through the chemo I should be enjoying my last days.
I took chemo anyway.
Now I'm waiting to hear if I qualify for surgery, many of my tumors have disappeared, and many of the ones in the lung have disappeared and the two remain have shrunk enough to qualify for the resection. All this after being told I would never qualify for resection. My official top amount of life left on this earth was on August 8th. That date has come and gone. I'm still here, still healthy except for the cancer hanging around and waiting to hear if I get surgery. (I go for my CT scan tomorrow again).
So hope? Yep, there's room for that, plenty of room.
My regime was 6 rounds of Avastin, 8 rounds of Xeloda, 8 rounds of Oxiplatinin.
Hospital wise, in US I recommend MD Anderson or Sloan.
Best wishes and luck to you and yours.
Winter Marie