What should I expect?

Welcome Sunblazer!
It's nice to have you here to our wonderful forum. I know how shocking this is when cancer hits your world. Like your wife, I am Stage 4 with mets to the liver, and I just found out I have a met on my rib bone that is not active thank goodness. Lots of people here with all stages of cancer who are all going through what your wife is.

I have 4 kids, 19, 15, 13 and 10, and married to a wonderful man. He takes good care of me. This is not a fun journey to go through, but you get through it, and believe me, dr's aren't God and I hate when they give prognosis's, that's so wrong, they don't know. People have been living with this type of cancer for years...5 years, 6 years, 11 years, just don't read the statistics, they are out of date, and will just scare you. I was diagnosed in Jan of 09, and still here so far, going strong. I believe I'll be here fighting this disease for awhile. You have to give it one day at a time, live life like you haven't lived before, just make the best of it. Your wife sounds like she's doing well, and we welcome here to chat anytime she needs too.

She'll have good days and bad days with the chemo, I had a colostomy, which I accepted, and have been ok with, it saved my life actually, I just wish you all well in this journey, and am here for any questions you may have about anything, if I know the answers

But hang tight, and just live, we aren't dying from cancer, we're living with it, a new life, and thank god we're still here

Hugsss!
~Donna

hello
Hi Sunblazer,

Welcome to the board- sorry for the reason you have to be here.
I was diagnosed just after my 41st birthday in August 2007 as stage IV rectal cancer, with numerous tumors in my liver and both lungs. I'm coming up on three years now, and am very much still alive and kicking! I also have three kids- ages 10, 14, and 17. They keep me busy and I am still able to do most of my mom duties- carpooling, homework help, making dinner, etc, etc. I do get tired and have to nap during the day probably 4-5 days a week but, other than that, I still look and seem like a pretty "normal" person. The picture I have is from a family wedding last summer- after I had cancer already for two years. My hair has thinned since that picture and is in bad shape but, other than my hair looking yuck now, I still look pretty normal & most people would never suspect I have this dreaded disease just by looking at me. I just wanted to let you know that to give you hope for your wife. It frustrates me when I hear doctors have given people a timeline for "how long" they have left. Yes, there's averages and yes, people obviously do die from this. I'm not trying to bury my head in the sand about that. BUT, I know that if my one of my doctors had told me how much time I had left, it would have been much harder for me to remain strong enough to be positive and fight this. The emotional, mental, spiritual state of mind is soooo important in fighting this beast! Since you have been given "the timeline", you and your wife will have to fight a bit harder emotionally to stay strong, focused, and positive in your fight against cancer. Another very important bit of advice... know that there are doctors who can "give in" and just tell you they "can't do anything anymore" or "we'll make you comfortable". Now, I'm not saying that there isn't an appropriate time and place for that for some patients, but what I am saying is that if a doctor tells you that from the get-go, then it's time to find another doctor- and do it quickly! I don't know if your doctors have been supportive in the "we're going to fight this" attitude or not, but I know that you really need someone like that.

This past February, I got to the point in my disease and treatment where I had "run out" of FDA approved drugs. I had done well through some, but then I did have recurrences and then I started having disease advancement while on treatments that had worked previously. I guess it was kind of like I was getting "immune" to them- they weren't working for me anymore. My disease advancement wasn't huge- but it was still advancement. Fortunately, it hasn't ever spread to any other areas in my body beyond the liver and lungs (which was how it was at my initial diagnosis), but I had gotten to the point where I had to find something else or things could get bad. I did have an insurance fight on my hands- the insurance companies don't normally cover the cost of non FDA approved drugs. I looked for a clinical drug trial, but didn't qualify for any but one, which was full so I couldn't do it. Sooo, I saw two different oncologists on a consultation basis (Dr. Fanta at UCSD in San Diego and Dr. Lenz at USC in L.A.). They both recommended that I take Gemzar with either 5FU or Xeloda. Insurance denied it twice & my husband and I decided to put it on the credit card. Once I started on it, I then appealed to the California Dept of Managed Care (I think all states have one). Amazingly, I got a call from the insurance co. (Health net) a week later, telling me they had reversed their decision and were going to reimburse me what I had paid and the gemzar would be covered from then on.

I just had another PET/CT scan on May 9th & it showed everything as "stable". This was good news, considering I had a year of disease advancement. My oncologist is hopeful that my next scan will show disease reduction.
In the meantime, I remain symptom free. After having stage IV cancer now for close to 3 yrs with "innumerable" lung nodules, I have no problems at all- no shortness of breath, no cough, no heavy feeling in my chest & no pain or problems anywhere else either. The only pain I deal with is in a few of my joints- maybe arthritis- maybe from chemo.

I know I rambled on here- but I just wanted to let you know that there IS hope! I still am fighting disease, but there are even a few stage IV patients on this board who have fought it and are now NED (no evidence of disease!)

I wish your wife well and NEVER GIVE UP!!!!!

Lisa