New to CSN

I don't live anywhere near you but I wish you the best. Steroids are hard on you as well, that's too bad you have to take them.

Darn, I just realized that I told someone I was on the wrong chemo. I guess that's chemo brain...

Easyflip said:

Hi Pilar

It's sad we have to meet here but welcome to the board. I'm stage 4 also and just had my liver met resected. Folfox is harsh but it's great news it's working on your tumors, I did it for 6 months. Stay the course and shrink those nasty tumors to nothing. Good luck! BTW I'm in California 

Easyflip/Richard

Welcome to the board Pilar: I too am stage IV with mets to the liver.  I also have done oxyalyplatin and it is a beast of a drug.  I have had my liver resected twice and have been NED (no evidence of disease) for 5 years so keep going girl and as Richard says...." shrink those nasty tumors to nothing"  I am up in Canada where we are expecting some snow flurries tonight!!! Stay in touch now you have found us........

maggie

janderson1964 said:

Welcome to the forum. I am

Welcome to the forum. I am glad that you found us. I have been stage IV for 9 years now and still going strong. I grew up in Morristown NJ. Not to far from you but I live in Virginia now.

This website is all new to me but I am here mainly for support.  My husband 48 years old was just diagnosed with stage 4 colon cancer.  The Oncologist was very dismal and not hopeful when telling us this.  He just had a liver biopsy because there was one lesion on the liver and we are awaiting the results to get the official stage of his cancer.  The Oncologist said he thinks it has spread to the stomach wall and there is no cure.  operations are not an option so he will be starting chemo.  The doctor has ripped hope away from us with his in humane attitude and coldness.  Nurses have tried to give us back hope that not all doctors are right, they are not God.  I'm just really scared and angry towards the doctor for contributing to my husband's lack of hope.  How are we supposed to fight for life when the medical community is giving up on us already? Any words of wisdom or support are welcomed.  Thank you. 

Greenwald family said:

New member my husband was just diagnosed with stage 4 colon

This website is all new to me but I am here mainly for support.  My husband 48 years old was just diagnosed with stage 4 colon cancer.  The Oncologist was very dismal and not hopeful when telling us this.  He just had a liver biopsy because there was one lesion on the liver and we are awaiting the results to get the official stage of his cancer.  The Oncologist said he thinks it has spread to the stomach wall and there is no cure.  operations are not an option so he will be starting chemo.  The doctor has ripped hope away from us with his in humane attitude and coldness.  Nurses have tried to give us back hope that not all doctors are right, they are not God.  I'm just really scared and angry towards the doctor for contributing to my husband's lack of hope.  How are we supposed to fight for life when the medical community is giving up on us already? Any words of wisdom or support are welcomed.  Thank you. 

Greenwald Family, please open a new thread so that we can offer our support and help.  Don't dispare, there are things you can do, people you can see. Hoping to see your own thread soon.  

PSUE - Trubrit

Here, many are big believers in getting to successful resection, by hook or by crook. You might research several routes of potential improvement.  

Dr Kemeny at MSK has unusual success in getting liver met patients to resectability using Hepatic Arterial Infusion, HAI, as well as systemic treatment.    Some people have had success with long term systemic  treatments of oral chemo like xeloda plus cimetidine, celebrex and/or PSK, as well as other alternatve adjuncts like curcumin, EGCG, milk thistle, lipoic acid to name a few adjuncts described in Life Extension protocols.  

If you research here and at Colon Club you can find many survivors who improved greatly by going beyond today's standard treatments and monitoring.  We also often compare biomarker measures and pre-, post surgical changes like CEA, CA19-9 and LDH. 

to the online community,  There are so many people here who have experiences with stage IV and doctors from all over the place.  I am very happy with my team but I'm in Southern California.  Good luck on the journey, we will all be here to help and support you.

Yolanda

Hi there, just wanted to say hello and welcome to this wonderful group.

Chemo has worked great for my liver tumors I'm sure it will for yours and that surgery will be in the future.

I don't live in NJ, California here, but I'm hoping you do get to meet members here, I have and it's great to sit down and talk with those who experiences can be shared and laughter can be found.

Pleased to "meet" you, 

Winter Marie

Hi Pilar, welcome to the forum, I hope that you will find this community as supportive and informative as I have. I joined back in early spring of 2013, after my mom was diagnosed with stage IV colon cancer, with metastases to the liver and the lungs. She's had a fairly rough time of it, getting a colostomy last year and switching between folfox, folfiri, and now erbitux, with avastin for good measure at different points. My mom had a similar situation to you, in that her doctors decided her tumor was inoperable, so she hasn't gotten any surgery, although she did had radiation right in the beginning, and again more recently when there was new activity in her main tumor region. For the most part she's been relying solely on chemo to keep the situation under control. She hasn't had allergic reactions per se, though she had some very nasty side effects from the irinotecan in her folfiri, and she still has to take medication now to deal with her mouth and throat sores. 

We're in Brooklyn, New York, which is a bit of a hike from where you are, but if you're ever in the area, I'd certainly be happy to meet, and hopefully my mom would be feeling well enough for an outing too (my mom's strength varies from day to day, it didn't help that her health wasn't great even prior to her diagnosis). What hospital are you going to? I wish you the very best with your continued treatment.