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What should I expect?

Sunblazer88
Posts: 5
Joined: May 2010

Hi Everybody ---
Just found the board today. I already know it is going to prove very helpful to me and my family.
Here is the issue --- My wife was diagnosed with Colon Cancer in January. She was staged at a IV at that time. The cancer had spread to her lymph nodes along with very signficant involvement in her liver. She had a colon resection in Febuary and she did very well with the surgery and subsequent recovery.
She has been treated at the Moffitt Cancer Center in Tampa and we are very happy with the progress she has made to date, but she is having her Chemo administered locally as we live about 120 miles from Moffitt. Also, we have three daughters ages, 15, 14 and 10.
In a follow up with the Oncologist, he gave her about two years (this was in April) or six monthes without Chemo. Currently, the chemo is going very well for her, she has had very few side affects (some tingling with cold objects, a couple very small, short bouts on nausea and one case of stomatitis). I guess my concerns are: What does the future hold? She is doing so well today, it is hard to imagine her going down hill, but certainly that is a possiblity, if not a probability. And how did you handle it with your kids? So far we have been fairly open with them, friends and family which has been a tremendous blessing to us. I just need to know what to expect next or even down the road if anyone can give me any advice, thoughts or just plain, old help!
Thanks so much,
Sunblazer88

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

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been living with this type of cancer for years...5 years, 6 years, 11 years, just don't read the statistics, they are out of date, and will just scare you.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

CessnaFlyer's picture
CessnaFlyer
Posts: 110
Joined: Aug 2009

The doctors don’t know and I have seen Stage 4 survive while some at Stage II haven’t. It's best to deal with this a day at a time. BTW, your messages are really very inspirational and you have helped me in the past with your encouragement. We are all truly blessed to have you and others like you in this group.

abrub's picture
abrub
Posts: 2131
Joined: Mar 2010

I was initially told that with Stage IV colon cancer the Median life expectancy was 2 years, which means that 50% of the Stage IV dx's live more than 2 years. You'll find a large number of Stage IVs here who have passed that mark (I'm at 3 years, and now given an excellent long-term prognosis).

No dr can give an expiration date. Treatments have improved and are improving as we write. My treatments were new when I received them. Stats cannot be based on the most current treatments, as treatments change so quickly.

That being said, none of us has a guarantee. Your wife needs to get through the treatments, and stay up on the changing options. Local chemo is fine, but stay in touch with the major cancer center for the latest and greatest options.

Hopefully, the treatments will be effective, and she will be with you for a long time.

You've found a great support network - we're here for one another.

geotina's picture
geotina
Posts: 2120
Joined: Oct 2009

Welcome to a most informative discussion board. My hubby was diagnosed 3/09, heavy liver and lung involvement and guess what, he is doing excellent, so far, working full time. You will find many on his board that are that are around several years after a Stage IV diagnosis and have a pretty good quality of life. If you click on our names you can read our stories.

Nobody knows what the future holds, not even your doctors. Some do very well, others not so much. There are all kinds of liver treatments out there once things are under control. Be sure to post any questions you have, don't worry about proper terminology, we will know what you are asking.

I have found that as George went through treatments, fatigue was his biggest enemy so keep this in mind in the event your wife experiences this, she just many be too fatigued to do all the day to day life chores she did in the past. If she needs to rest, make sure she gets it. The kids may have to pitch in a little more than they may be used to doing.

Wishing you the best and welcome - Tina

imagineit2010's picture
imagineit2010
Posts: 153
Joined: Jan 2010

Hey Sunblazer, welcome. I think the others posting are correct in what they've said but I would like to add one thing. Nutrition! Some people on here have continued with their previous lifestyle and fared well but most others have made some changes to diet or habits that helped them either with side effects or energy and health. There is a very good book I'm currently reading called Beating Cancer With Nutrition. It is written by Patrick Quilln PhD, RD, CNS. He's has been involved with cancer treatment for around twenty years. He has written almost 20 books and served at Cancer Centers of America for ten years. The book gives some invaluable insight into the entire cancer process and how nutrition can assist conventional treatments as well as get your own body to pick up the fight. The book is a few years old and I picked one up at a half-price book store for $12.00 (you can probably find it cheaper). There are many books dealing with this subject but this one is pretty thorough. I'm enjoying learning from it so I figured I'd pass along the tip.
Best of luck,
Chris

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Sunblazer88
Posts: 5
Joined: May 2010

Wow, thanks for the great out-pouring of support. I agree that I need to get her on here. Thank goodness with the chemo her attitude is just wonderful. Also, as far as nutrition goes (and this was one of the shockers), she is a Registered Dietitian who has eaten a great diet ever since we have been married (21 years this fall). She has always tried to eat (and has been very dedicated to it) a low fat and high fiber diet. In addition, we exercise pretty regularly. I know there are no gurantees on how we do with cancer or who gets it, but based on her lifestyle it sure came as a shock. Again, thanks for the great input and advice and I look forward to becoming a regular browser and occasional contributor.
Regards,
Sunblazer88

pf78248's picture
pf78248
Posts: 209
Joined: Jul 2008

I am so sorry your wife got cancer and you had to join this group. But sometimes no matter what we do we get hit with the Big C. There are people on this board from all spectrums of lifestyle and sometimes I think it's just an unlucky draw. I hate it and I know you both do, too.

My husband was diagnosed stage 3C in April, 2008, then stage 4 in January, 2009, He went through his colon surgery then six months of chemo. His first scan after the six months showed cancer had spread to his liver. Two different surgeons told us he was inoperable. None of the surgeons nor his oncologist ever gave him an "expiration date" and I hate when doctors do that. It's so devestating just to have the diagnosis and no one knows for sure the future. Our oncologist finally said it's time to see what else can be done with the liver and recommended M D Anderson. We went there and my husband has now had his liver resection "extended left hepatectomy" and is doing fine two months later. The surgeon said with resection, he has a 70 percent chance of beating this cancer. So we now cautiously talk of cure. Who knows what the future is? We came very near to having a major auto accident a couple of weeks ago and could have died right there. I believe only God knows when our time is up.

I say this after we've battled this together for over two years. I think I was right where you are for the first six to nine months. It took me a long time not to look at cancer as a death sentence, but more of a chronic disease. That and a little antidepressant pill every day keep me from going to dark places! So don't hesitate to get some help for yourself and your wife. It would be strange not to have some depression when the one you love has stage 4 cancer.

This is a great board. I've really tried to get my husband on but he won't for whatever reason. So I keep up with the wonderful, supportive cancer survivors and their caregivers who post here. It is amazing what you can learn to help her get through the tough times with this group.

Best of luck. It's not easy, but you will both get through this. And I know you are at an excellent cancer center, but we waited a year hearing resection wasn't possible when it was. Ask what it would take to get to the point of resection and if you don't get a straight answer, find someone who wiill give it to you. Oncologists don't really know, you need to find a good liver surgeon with lots of experience.

Please ask questions here and don't hesitate to keep us posted. Your wife is going to continue to need a lot of support and she's very fortunate to have you. I've always considered it a privilege not a duty to go through this journey with David.

Hugs and Healing,
Priscilla

AnneCan
Posts: 3692
Joined: Oct 2009

Welcome to the forum, Sunblazer88!

I am sorry you + your wife + family are going through this. Many of us on the board believe no one can give us an expiration date. My own doctor said "I don't have a crystal ball". I was diagnosed last March with colon cancer. They suspected it might have gone to my liver but were not sure. I had radiation + chemo last summer + then was supposed to have surgery. Unfortunately it was determined that I did have liver mets (4) + my medical team would not give me surgery as the liver mets would grow as I waited for + recovered from surgery. I was put on chemo (folfiri + avastin) which seems to be whupping the cancer's butt - my 2 colon tumours are not-detectable + the liver mets + affected lymph nodes have responded well. I wish your wife well + lots of hope! It is great that your wife is doing well with the chemo. No one knows for sure what the future holds. I am trying to live 1 day at a time but as I explain to people, my life is also in 3 month increments because every 3 months I have a scan + then my treatment for the next three months is determined.

iluvmms's picture
iluvmms
Posts: 134
Joined: Aug 2009

I also go to moffitt. I am about 120 miles from there too. I just had surgery there about 4 weeks ago, love the hospital(as far as hospitals go that is). Where do u live? Its rare to fine others from here in sw florida.

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

another welcome here sunblazer. I am so happy the chemo is going well....that is a great gift so just go with that for now. I know it's hard to accept everything that is happening but there really are a number of stage 1V's here and still going strong. I was given 6 months after colon surgery due to very heavy lymph and liver involement....and then a liver re-section happened and chemo and then another liver re-section and more chemo and that was 6 years ago. I think about my cancer almost every day but I don't worry about it as much....and I sure refuse to ask for or accept my expiration date!!!

MY daughter was engaged to be married on Friday of this weekend.....I plan to be at that wedding...next year.

hang in my darlings and be prepared to fight the good fight....

get thorough chemo and see where you are then

hugs and welcome.....mags

Sunblazer88
Posts: 5
Joined: May 2010

We are in Cape Coral. Moffitt has been very good to us and we are very happy with the treatment. Dr. Yeatman did my wife's surgery and we found out after the fact that a friend of ours had also used him and they were very pleased, too.
We plan on keeping them in charge even though she is receiving her chemo in Fort Myers. Again, everyone thanks for the encouragement. The thoughts and prayers are nothing but positive and I will keep you all posted on her next chemo treatment next week. By the way, the doctor said she could skip a treatment (or take a week off) if she wanted to go on vactation. Anyone have any thoughts on missing a chemo treatment or delaying one?
Thanks,
Sunblazer88

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

You have to be able to live your life, otherwise why are you bothering? I have had to delay treatments a number of times over the years in order to fully enjoy a personal family treat! It was always considered a delay, though, they don't just count the missed day as a treatment; you will resume where you left off when you return. I know there's a point at which if you take too much time, you really are taking a "break" and when you return it would be back to full chemo, not a delay in the original treatment. Has something to do with the fact that the chemo treatments depend on a schedule of "fight and rest" that is particular to the drugs you are receiving. Your onc said take the time, so enjoy the vacation!
mary

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

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

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

All good advice. Welcome to you Sunblazer. My husband was DX in Oct. of 2008. We don't look at the time thing. They can't really say for sure so we just keep hoping for good results from Chemo and take one day at a time.
We have a son 37 and a son 19. We are very open with them. I think you have to be. It is hard. Sorry you had to become part of the group. There are some good people here that have helped us out a bunch. The only thing I will say is if you feel good about your care now stay with it. Take care, Paula

mom_2_3
Posts: 965
Joined: Nov 2008

Hey, did you graduate high school in 88 too? :)

18 months ago I was also given the "2 years" quote as well. I was told I was unresectable as there were 5 bilobar mets in my liver, the largest of which was 5 cm. I got a second opinion at a major cancer hospital (Memorial Sloan Kettering) and have been there for my treatment ever since. You can read the details of my treatments by clicking on my username but 2 weeks ago I had the latest CT scan which confirmed I was still NED since my liver resection 15 months ago. In addition to the liver resection I had an HAI pump implanted to help prevent recurrence in my liver. If you want more information about the pump you can PM me. Additionally, Phillieg and ADKer on the boards here have also had HAI pumps implanted.

My advice to you is to be seeking second opinions/curative options/surgical options for your wife right now while she is feeling well and tolerating treatments. Is she a surgical candidate?

We do have 3 children but they are all young (6, 4 and 18 months). They have never heard the word "cancer" and hopefully won't know until they are much older about my diagnosis. I have tolerated chemo (off chemo since November 2009) very well and there were no questions from them other than "where were you" after I came home from an appointment. As I love to shop I would always tell them I had been at the mall... :)

All the best,
Amy

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