PLEASE HELP! Dad preliminarily diagnosed with Colon Cancer Stage 4

So very sorry to hear about your dad, but glad you have found this site.  There are many many years of collective experience in the folks who post.

You mention scans...did they do chest, abdomin and pelvis?  You also mention another biopsy next week...is that for lungs or liver?

If the stent the placed in the colon works, they will likely not want to do surgery if the diagnosis is confirmed stage 4.  From what I have learned here, they like to see if chemo will control or minimize exisitng cancer.  Surgery may be an option in the furture.

It would be helpful if your dad put you on all HIPPA forms as being able to get info about his medical condition.  That way, even if you are not with him when docs visit at hospital, you can still get the info from them.  Once he is released, it would be good to have you go with him to future appointments so you can ask questions and make notes on the treatment plans.  You can then ask here about what you have learned.

I know how difficult this is for you.  There are folks who post here who have been stage 4 for many years, with treatment.  Don't give up hope.

Hugs,

Marie who loves kitties

Hi Julia

I'm so sorry to hear about your Dad    Cancer sucks big time.   The standard chemo treatments for stage 4 colon cancer are FOLFOX or FOLFIRI usually will the addition of Avastin.  I do not have experience with rectal tumors but most people I know must do a series of radiation treatments for those in addition to the chemo.  There a lots of people here who have experience with everything available and they'll chime in with their thoughts too.  Your Dad is still young at 65 and if his health has been good prior to cancer he may do quite well with the chemo. 

I'm a bit younger than your Dad and my situation was considered bad at my diagnosis too.  I'm 4+ years now, on chemo yes, but living a good life just the same.  I'm still on the same chemo I started with and so far, it still works to keep my tumors at bay.

All the best to you and your Dad.  Stay here though, everyone will help you through this. 

There are a lot of us that are Stage IV colon cancer on this board, I am one of them.

The reason for the chemo is that is can shrink the tumors, when the tumors are found elsewhere, such as lungs, liver etc., (that's what makes it stage IV, it has spread to other organs) they usually will not do surgery unless the tumors are shrunk, the goal usually is to get to the surgery.  I am in reocurrance of my colon cancer (3 years next month since diagnosed) and am doing chemo in order to shrink the latest tumors with surgery.  Cutting the tumors out is our goal.

In your father's case, he probably needs the tumors shrunk in order to relieve or prevent the obstructions.

You, your dad and family will be going through a lot of feelings in the up coming months.  The first is usually the crying and why us stage, the denial (thinking you'll wake up and they got it all wrong) sometimes anger, etc., the fighting mode may be there the whole time, or it may kick in a couple of months later after the shock has worn off.  It sucks, big time, colon cancer sucks, but just as your dad does, we have it, we are learning to LIVE with dealing with it, trying to get rid of it, chemo sucks, but it also has given many of us a chance to live a lot longer.  Next month I will have 3 extra years, I was given 2 weeks without chemo,  4 to 6 months with chemo, I'm still here, started college, was here for my 4th grandson's birth, my son's graduation from his 2 year college and into his 4 year, living and loving life.  Life isn't over, it's just different now.

The chemo is different for different cancers.  My sister-in-law is stage IV breast cancer since last year,she's lost weight, looks terrible, I have stage IV colon cancer, same weight, and look healthy (most of us Stage IV colon cancer look very healthy, it's difficult for people to believe we have cancer).  I have had a fairly easy time with the chemo, some have a difficult time, you don't know until one has it, how it will affect one individually.  I've tried not to fear chemo, but to think of it as working with me in the fight against my tumors, as long as it's doing it's job, I'll do my job, making sure I eat, stay hydrated and mentally fighting that cancer!!!

Your journal is an excellent idea!!! 

How long does he have?  No one knows, some can die within the year, some years later, and others years and years later.  So far as I stated above, I've gotten 3 years, and plan on having more.  It depends on your chemo, your surgery, your body's reaction.  Let's assume he's going to be around for quite some years and look at the long term plans for him.

My heart goes out to your family as you begin this new adventure in life and learn to travel through the many bewilderments that cancer causes.

Winter Marie

julita128 said:

GOD BLESS YOU ALL THAT RESPONDED!

GOD BLESS YOU ALL THAT RESPONDED!  I am going to make it part of my plan to check this site as much as possible.  I am keeping hope with what you have all given me.  For those of you that discussed particular chemo regimes, can you maybe give me some more info?  I only know chemo as chemicals that kill cancer cells.  When you mentions names and times I am lost.  Are there rounds of Chemo?  

I am here for him and will be always. I have been with him for 8-10 hrs at the hospital every day just watching him sleep helping him around and encouraging him to walk as much as he can.  

I spoke to the covering GI today who said that they want to make sure dad can pass food as he progresses to solids before he goes home.  Good Lord I ran with that and told Dad he will be home soon.  I truly believe that!  I am thankful I am a teacher (my first year) and can be home during the summer to tend to him.  I just pray he is here with us.  

Mom however has PTSD and some depression so I also need to figure out a coping mechanism for her as well. (Any ideas?)  I spoke to her social worker and gave her my number if she has an ideas how to proceed with Mom being able to deal. 

I cannot begin to thank you all for the insight! God is good for leading me to you! 

-Julia

(28/NYC)

And for those of you surviving i pray God continues to provide you health and strength! 

 

Anyone in the NYC area with Drs they recommend or services etc please let me know. 

My chemo's were Oxyplatinin, Xeloda (pill form of chemo) and Avastin.  The Oxy (call it that for short of Oxyplatinin) and the Avastin were given intrevenously through my port (a port is installed in the chest and the chemo goes through that into your system, I had originally no port and it went through my arm veins and it HURT like hell, so if your dad does chemo, make sure that a PORT is discussed with the oncologist, a port is installed by a surgeon in an outpatient process)once every three weeks, the Xeloda was a pill form that I took twice a day for two weeks, with one week of no chemo. Some people go every three weeks, some every two weeks, some once a week.

The FOLFOX AND FOLFIRI are chemo combinations that I don't know much about, so someone else will chime in. 

The Oxy/Avastin/Avastin combination worked great for me, and depending on how advanced and other varibles, will be the deciding factor for your dad's oncologist, FOLFOX and FOLFIRI have worked great for others.

The first three chemo's stopped working for me, so I am on a new chemo called Irinotecan which is also working great.

When you find out which chemos the oncologist prefers, please let us know, because between all of us, we have tried one chemo or another that has been on the chemo market. So no matter which chemo there will be several here that can give advice on the effects of their individual chemo regime.

Just remember, each person reacts differently to chemos.  So far, for me, it's been pretty much a breeze compared to some others reactions. So just keep that in mind if you hear some bad ones, okay?  The problem is, you don't know how it will affect your dad until it does.  BUT...we can prepare you and him for the side affects that happen with those chemos (I think that's what helped me through my chemos, knowing what to expect and not surprised when it happened, thanks to the good people on this site).

Winter Marie

julita128 said:

2nd Opinions? Beth Israel Medical Center?

Thanks Alice! 

God bless you in remission.  I am going to look into Sloan.  Do any of you recommend a second opinion as part of the process?

Dad is at Beth Isreal.  I am not sure if this is quality care for his condition right now.  While most are nice i just have a sense that most of these doctors with the exception of a few are students.  I want an experienced professional in charge of my Dad's care.  

Ok so Chemo requires a port that is going to be placed in my Dad?  Where?  

 

The port goes into the chest, usually on the left side, it will be just under the skin and visible, it is about the size of a quarter.  It's like under an hour surgery, outpatient.  My oncologist (onc for short) never mentioned that a port even existed, the infusion nurse did, thank goodness for the nurse.  So make sure to ask first thing about getting a port installed from his onc.

Winter Marie

Sorry you found us but you will find so much information here.  Sounds like they are treating your dad with aggressive movement on treatment which is great.  You need to make sure that someone is there at every visit, appointment, scan, test, etc to make sure that he is not only hearing what he wants and not what he should.  It's hard to come to grip with, but it's imperitive.  Wait until the path comes back and the doctors come to conclusion on what they want to do.  You (and your father) will now go through such a rollercoaster of everything and it will bring you full circle and start again.  It's normal and confusing.  Come here, state your concerns, your fears, your questions.  We are here to help.  Stage 4 is not a death sentence.  There are many on this board that are still here after 8 years.  It's scary here but you got someplace to come.  Good luck to your dad and let us know the path and how he is doing.

Kim

julita128 said:

2nd Opinions? Beth Israel Medical Center?

Thanks Alice! 

God bless you in remission.  I am going to look into Sloan.  Do any of you recommend a second opinion as part of the process?

Dad is at Beth Isreal.  I am not sure if this is quality care for his condition right now.  While most are nice i just have a sense that most of these doctors with the exception of a few are students.  I want an experienced professional in charge of my Dad's care.  

Ok so Chemo requires a port that is going to be placed in my Dad?  Where?  

 

While you are seeing lots of students, a senior physician is overseeing your dad's care. The students are not making any critical decisions.  However, he should get excellent care at BI.

Second opinions are always worthwhile, even if just to confirm the first.  Frankly, I had 2 opinions with 2 drs at MSK, and one was terrible (and completely wrong) and the other was Dr. Paty, who knew exactly what to do about my rare cancer.

Ports make chemo much easier.  Mine was in the right - they tend to be placed in the upper chest.  Have your dad ask for a prescription for Emla cream to use before chemo - then he won't feel the needle going into the port at all. (You gob it on thickly an hour or so before chemo, and cover the area with plastic wrap.  The chemo nurse wipes it off, but it will have numbed the area well.)

Good luck to you and your Dad through all of this. 

Alice

julita128 said:

Thoughts on John's post on Alt treatments?

Anyone here care to share their thoughts on alternative treatments? 

Can you elaborate on the juicing?  What exactly is that?

and send a few hugs to you and your dad.  You've already gotten a lot of good advice here, so I don't have much to add in a practical sense.  The one alt treatment that I tried and found possibly useful was taking cimetidine (brand name Tagamet) for a week before and after surgery.  If your dad has another surgery in his future, it's worth throwing into the mix, as some studies suggest it reduces the chance of the cancer spreading during surgery.  I've had 5 surgeries, and it was only after the last one that I reached NED for any extended period of time (a little over a year at this point); however, I say "possibly" because I have no way to know if it was the cimetidine that did the trick or not.  But it's OTC, and can't hurt to take for a few weeks, so it seems like a good one to try.  As for juicing, I've never done it, but there are others here who have (it's basically just what it sounds like...throwing healthy fruits and veggies into a juicer and drinking the results), and I'm sure they'll be able to give you some input.  I know there many recipes online.  Seems like another "can't hurt, might help" addition to any more traditional approach.  Stay strong~Ann Alexandria 

I'm sorry you have to be here.It looks like you have already have gotten alot of advice.The first time I was dx with cancer,I had a lot of pain going to the bathroom,the tumor was blocking most of the intestine,hence the blood.I got a colonosomy[2008],and did fine untill nov.2011,when the cancer came back,and had spread to my liver.I did some more chemo,avastin,oxy,5fu,etc.,then more surgery on my liver.Now I am doing fine.Your father,and you should get all the information you can,and write down all the answers,and last of all,never,ever give up,and don't get sad,get mad ,and fight the cancer with all you can.