New to cancer, and the board, looking for hope

JayhawkDan

Been lurking for awhile and can see there's a real, caring, community here. I was diagnosed this January with Stage IV colon, w/ extensive mets to the liver. After pathology from colonoscopy, saw a local oncologist and 10 seconds in to telling my wife and I his diagnosis he said I would be on chemo for the rest of my life, and I was terminal. From going from thinking I had gastritis a few days before it was obviously quite a blow and devastting. We have a respected large university cancer center about an hour away a decided to go for a second opinion. I told that oncologist what the first one said and she said it was too early to agree with the first dx. There was just too much that we didn't know yet. I really liked this oncologist --she took a lot of time to explain to my wife and I what was going on, and what she suggested treatment-wise. The two hospitals work together and I'm on the treatment prescribed by the second (university) oncologist, but being treated at my local hospital. The words from the initial diagnosis, "chemo for life," and "terminal" are seared into my brain, but the 2nd oncologist has given us hope. And my CEA numbers are seemingly fantastic. I've had 5 chemo treatments -- folfuri, and vectibix -- and have gone from 44 to 43 to 12 to 4.2 to 1.8 this week. I don't really understand the significance of being in the "normal" range (under 3), but it sounds great to us. I don't get much info from my local oncologist, but I'm seeing the "hopeful" one this coming Monday. Also, a PET scan is scheduled in a couple of weeks, and it's my understanding that it will give us a much better idea what the cancer is doing. Sorry about the rambling, I just wanted to get this down and say "hello" to the board. I "hope" I have reason for "hope!"

tootsie1

Glad you're here
In my opinion, there's always reason for hope! Yes, we have to be realistic and understand that this is very serious business, no matter what stage the cancer is. We don't, however, have to abandon hope and just sit around knowing that this is IT. I'm so glad you found a "hopeful oncologist," and I pray that you will be given a course of treatment that will make a huge difference in the projected outcome for you.

*hugs*
Gail

janie1

Hi and glad you posted.
Hi and glad you posted. Also glad you got that second opinion. Doctors are all not the same. I think some are still in the mindset that this is 1970.
You have had fantastic results.....cea is very low. With an aggressive oncologist, hopefully there will be a number of options, surgery, or something like Sir-Spheres to target the liver directly (among others).
I had about 70% of my liver removed, after hearing the colon surgeon tell me no one would EVER touch my liver. The liver specialist I found does this all the time. You need to find the most experienced.
It is a long journey, just take it one day at a time. Ask lots of questions. We are all "family".
Take time to enjoy the weekend

tommycat

Welcome
There is a lot of hope here....walking, breathing, living life-type of hope. Plenty to go around too.
Welcome to the Board~

steved

Hope
Welcome to the community. You will find a lot of hope here though it will vary in what it means to people. I have lived with cancer for 8 years now and had initally hoped for a cure. I even got to the stage of believing it was true after 7 years clear. Now in recurrence again I have also been told by varying docs that there is no curative treatments and others that there may be (though fairly radical ones). I have also lived for a period recently getting my head around the idea of 'terminal' and 'chemo for life'. In that phase it felt like I had lost hope and needed to accept that losing hope of a cure was going to be an important part of accepting my position.

What I have come to believe though is that hope remains but will vary in what we hope for. I now hope to be around for as long as possible to see my children grow and hope to retain a quality of life that allows me to enjoy my time. I am unsure if I retain hope of a cure.
You are very early in this process both practically and emotionally. Find people (professional and personal) around you who match how you want to think about your position- both docs as well as perhaps some people close to you personally will not match your ways of thinking and may not be the best people for you at this time.

Hope IS vital but also accept it comes in many forms.
Steve

thingy45

steved said:

Hope
Welcome to the community. You will find a lot of hope here though it will vary in what it means to people. I have lived with cancer for 8 years now and had initally hoped for a cure. I even got to the stage of believing it was true after 7 years clear. Now in recurrence again I have also been told by varying docs that there is no curative treatments and others that there may be (though fairly radical ones). I have also lived for a period recently getting my head around the idea of 'terminal' and 'chemo for life'. In that phase it felt like I had lost hope and needed to accept that losing hope of a cure was going to be an important part of accepting my position.

What I have come to believe though is that hope remains but will vary in what we hope for. I now hope to be around for as long as possible to see my children grow and hope to retain a quality of life that allows me to enjoy my time. I am unsure if I retain hope of a cure.
You are very early in this process both practically and emotionally. Find people (professional and personal) around you who match how you want to think about your position- both docs as well as perhaps some people close to you personally will not match your ways of thinking and may not be the best people for you at this time.

Hope IS vital but also accept it comes in many forms.
Steve

Welcome
Sorry to say welcome to this board, however, here you will find support, humour and yes HOPE.
Try to live today and hope for tomorrow. Today is called "present" and it is a present.
enjoy each day and after awhile you will find that there are many todays and more tomorrows to follow.
Hugs,
Marjan

Sonia32

Welcome to our family.
Glad you found us, big hugs.

abrub

I met with an onc similar to your first one
I had several consultations when I was diagnosed with Stage 4 Appendix Cancer five years ago. One of the experts told us in no uncertain terms that I was terminal, and would be dead within 5 years; probably sooner than that.

As you can see, he was wrong. I selected a different onc who was straightforward with me, but anticipated long-term survival. He has not given me an expiration date, and doesn't see one in the near future.

Tho I knew there was a lot wrong with the diagnosis from the first dr, his prognosis still clung to me until last Friday, when I hit the 5 year mark, in excellent health!

Chemo can shrink your tumors, and make them operable. I know a lot of people with stage 4 colon cancer who are doing well. I hope that you'll be another.

Alice

barbebarb

Stage IV-stay hopeful!
These boards and people are great sources of inspiration and hope.
You have to find a positive oncologist and someone that offers alternatives and plans.
I don't think I would have gotten to where I have w/treatment if I had not found these boards.
Keep moving forward. You have much reason for hope.
Barb

PhillieG

Welcome JayHawkDan
Life's terminal so I wouldn't put too much stock in what the first oncologist said. I'd probably just stay with the second one if it were me.
Why put yourself through a gloom and doom doctor...

It sounds to me like you're off to a good start. So you have not had any surgery yet? I had started with chemo first too. For me it was the way to go due to extensive liver mets. One thing you may want to ask about is HAI pump therapy. It's where a pump the size of a hockey puck is implanted under your skin usually (not always) after liver surgery and chemo is administered to the liver via a catheter along with the systemic chemo. Many oncologists have had great success while others discount it as "old technology".

FYI: you have not yet begun to ramble... Feel free to let lose.
You certainly have reason to hope, being diagnosed with stage IV CC is not what it used to be.
Many advances have been made and we have many more options at our disposal.
Cancer can be something a person can live with...
-phil
Diagnosed Stage IV Colon Cancer/Feb 2004

need support

welcome aboard!!!

I'm realitively new also, but this is a great group of people. In some way we are all in this together. I waited 8 months before seeking help from others with my condition, that was my biggest regret. Lots of support here.

pscott1

Welcome...
I too am Stage IV colon w/multiple mets to the liver. There is ALWAYS reason for hope! I too had a horrible experience with the first Onc I dealt with; she also told me 'terminal' and possibly 4 years to live at the most. I went for second opinion and love my current Onc. I was told chemo for life but after 1 year into this, I have already been on a chemo break since January 13th. I'm at 1.0 on CEA and my lesions are shrinking and disappearing. NEVER give up hope! I will keep you in my prayers!

Hugs,

Pam

taraHK

Welcome
There are folk on this board who were diagnosed with Stage IV and who have been cancer free for years. There are others who are 'living with cancer' -- but with a good quality of life. And medical approaches (drugs, surgery, other) keep progressing all the time. Have faith! Work with doctors who inspire faith!

Love the sound of those falling CEAs!

Good luck to you.

Tara

janie1

taraHK said:

Welcome
There are folk on this board who were diagnosed with Stage IV and who have been cancer free for years. There are others who are 'living with cancer' -- but with a good quality of life. And medical approaches (drugs, surgery, other) keep progressing all the time. Have faith! Work with doctors who inspire faith!

Love the sound of those falling CEAs!

Good luck to you.

Tara

JayHawkDan
(I replied earlier)
Just thinking about you. By your name, I am assuming you are perhaps from Kansas.
I was watching the weather channel earlier, and see there is some nasty weather in Kansas.
I hope everything is OK !!

herdizziness

The same story here
I was told chemo for life, that I could expect six months of it with the chemo. That was two years ago, told my tumors were too extensive for surgery etc.. Had my surgery December 2010. Still here still plucking along, full time college student now as well as busy grandmother and wife. HOPE??? I'm proof of that hope, my CEA was in the thousands, now 3.2 or something close to that!! Keep the hope alive!
Winter Marie

marbleotis

Stage IIIb Colon cancer Dx date 1/13/12
Bravo on the second opinion. I am fortunate to have a great oncologist and all of my Doctors have been fantastic. After the colonoscopy and the actual ..."you have cancer discussion", the Doctors said this can be fixed surgically and with chemo. So I said let's go. You will have days you feel down. This is normal cancer or not. I am learning not to let cancer steal my joy. I need to get through the treatments (#4 Monday)and I will. Be strong, continue to ask questions and the CEA results are great. I do have one thing I keep repeating over and over in my head when it gets tough - "I have no other choice", "I have no other choice" and so on. Ths brings me back to reality. It really works - try it. Best of luck.

JayhawkDan

marbleotis said:

Stage IIIb Colon cancer Dx date 1/13/12
Bravo on the second opinion. I am fortunate to have a great oncologist and all of my Doctors have been fantastic. After the colonoscopy and the actual ..."you have cancer discussion", the Doctors said this can be fixed surgically and with chemo. So I said let's go. You will have days you feel down. This is normal cancer or not. I am learning not to let cancer steal my joy. I need to get through the treatments (#4 Monday)and I will. Be strong, continue to ask questions and the CEA results are great. I do have one thing I keep repeating over and over in my head when it gets tough - "I have no other choice", "I have no other choice" and so on. Ths brings me back to reality. It really works - try it. Best of luck.

Wow -- thanks for the hugs and the welcome...
Lots of information, inspiration and hope...thank you everybody. My first oncologist said surgery isn't an option, but the second consulted immediately with their liver surgeon and said surgery isn't possible now, but she's hopeful it may be down the road. Said I can live with 20% of my liver. She also said "you seem so healthy," so I figure that's got to be a good thing. What you said, marbelotis -- "I have no other choice..." that's the bottom line isn't it? Just fight the good fight every day and hope for the best. To janie1 -- it has been a wild weather day here in the midwest -- and it's still going on. I'm 57 years old, have lived in the area virtually my entire life, and I've never seen a tornado, and don't really want to. So I'm going to be up for awhile tracking the storms in our area and thought I'd check to see if anyone resonded and your comments and encouragement literally brought me to tears. It's easier to have hope when you're surrounded by it, and see what others have lived through and accomplished. I'll let you know what my "hopeful" oncologist says on Monday. Or maybe I'll be in surgery by then and won't have time...haha. I try and laugh as much as possible and I appreciate humor, as well. Thanks again, and hugs to all!

steveandnat

there is hope
I am praying for you and everyone fighting this terrible cancer battle. We are strong people who won't give in to cancer no matter what the once tell us. I have been dd stage 4 since June 09 and fight it everyday. Some days are so good and I take advantage of them to the point I probably overdue it and pay the price later. I'm so glad you found us and know you among friends here. Jeff

JayhawkDan

steveandnat said:

there is hope
I am praying for you and everyone fighting this terrible cancer battle. We are strong people who won't give in to cancer no matter what the once tell us. I have been dd stage 4 since June 09 and fight it everyday. Some days are so good and I take advantage of them to the point I probably overdue it and pay the price later. I'm so glad you found us and know you among friends here. Jeff

good days...
Thanks Jeff. It's such a cliche about enjoying things like it's your last day. But it's been very true for me. I so appreciate days where I'm feeling good, and enjoy the little things in life so much more than I ever have. I also realize the blessings I have and I've got so many people praying for me that I don't even know, and that's also very comforting. It brings me a sense of peace in the midst of this chaos.

Varmint5

JayhawkDan said:

good days...
Thanks Jeff. It's such a cliche about enjoying things like it's your last day. But it's been very true for me. I so appreciate days where I'm feeling good, and enjoy the little things in life so much more than I ever have. I also realize the blessings I have and I've got so many people praying for me that I don't even know, and that's also very comforting. It brings me a sense of peace in the midst of this chaos.

Jayhawk Dan...
This certainly caught my eye! Went to a Jayhawk themed baby shower for my best friend's daughter a few weeks ago and took my baby grandson to show him off - he wore his Mizzou outfit! He was a hit anyway!

I am mom to my 33 year old daughter who just had her first child (my grandson) last August and was diagnosed 7 weeks later with stage IV colon cancer, extensive inoperable liver mets. It's been quite an experience - at first devastating and desperate, but then learning to live with the diagnosis and getting on with the treatment and all that entails. Coming on this board and the Colon Club has given me such hope and I know it will do the same for you. I'm glad you found it - such a great group of positive, supportive people here. It's amazing. I can't imagine the past few months without these people who know exactly where you are coming from.

Best wishes to you - sounds like your treatment is working very well!

Sandy