Wife 31 newly diagnosed with Stage IV

GoingToBeatIt · Regular Joined: 28 Apr 2007 Posts: 19

Thanks guys. The information is terrific. Keep it coming. Not inundating me at all.

We have an oncologist appointment for Thursday this week and another with Robert Wood Johnson next week. RWJ is supposed to be one of the best and they are in-network with my medical (Aetna) insurance.

I've put about 5 calls in to Sloan and none were returned so that doesn't give me a good feeling about getting my wife treated there. If they can't return a call (and believe me we've stated "it's stage IV"). A simple callback would be nice.

MJD77: my wife woke up one day with an enlarged liver that prompted an ER visit. They did CT and MRI there but no biopsies. She has had three so far in two separate procedures as the first came back false-negative.

Tonight she's struggling to drink the colon-flushing crap. I tried it, it's horrid. Colonoscopy is tomorrow, they're going to knock her out for it.

As for Thursday, I'm going to push for a PET scan as I really want to make sure there are no mets to the lungs or anywhere else. I assume that's a good idea?

Thanks again guys, helps so much to hear from others and to talk about it.

-fs

P.S. MJD77, how long ago were you diagnosed?

cptmac · Regular Joined: 19 Apr 2007 Posts: 37

Before you rush into anything, wait and find out what a doctor has to say. Everyone is different, also different doctors will give you different opinions. In MO they wanted to do surgery immediately and said I could die at any moment. When I went to MN they told me that mine was a slow growing cancer. Although I didn't need to rush, I would need to do something soon. Once I made my decision, they assembled the best surgical team possible. Since I had my colon and liver surgery seperately (I could have done them together, but chose a different protocal) It was important that they were exactly 4 weeks apart. So they had to put together a colon surgical team and a liver surgical team. I had my colon surgery on August 13th, my liver surgery on September 13th. I'm just telling you this because everyone is different. Make sure you've got all the information before you make a rash decision.

Although the Dr.'s in MO told me not to lift anything or do this and that, because my colon could rupture and I could die. I knew I wanted to get another opinion from a top doctor. So I had to get all of my medical records in MO (they wouldn't ship them to MN) and boarded a plane and went to MN. The Dr.'s in MN said I needn't worry.

Here is a post I wrote to someone else about what my colon surgery was like. She, like me, had never been in surgery before and was going in for her colectomy. There are also tips on how to prepare.

I too had never been through surgery. So everything scared me.

But, my whole colon surgery was uneventful. It was the stuff you do preop that was more difficult. I bathed in antibacterial soap for a week prior. You don't want your own germs to kill ya. I took a shower the night before and the morning of surgery. Make sure you don't have on any make-up (even if you are a guy, I work in the media and I see a lot of guys with make-up) or fingernail polish.

Some doctors will give you antibiotics before surgery, some don't believe in it.

The night before, the Dr. will give you some sort of stuff that will clean your system out. Similar to when you had your colonoscopy. I drank mine with apple juice chasers. Make sure the bathroom is clear and your the only one who has priority to use it. And that you have soft toilet paper or baby wipes.

You will then go to the OR waiting room and sign in. They will give you some paperwork to sign. They will call your name and you will go to pre-op. You will change out of your street clothes and into hospital gear. The anestheseologist will come in. I asked for an epidural. But you can get general anestheia if you like. They put some stockings on my legs and I put on a surgical hat for my hair.

My surgeon came in and talked with me. So did my RN, who said she would be my advocate. They all asked what surgery I was having. They asked me if I had a sensitive sense of smell. I asked how do you judge. They asked me what I smelled right now. I said some type of beef dinner. No one smelled anything. The Surgeon told the RN to go check it out. She said someone had just walked down the hallway with a beef stroganoff dinner. So, they marked very sensitive.

They put some booties on my legs that blew up and massaged them, this is to make sure you don't get any blood clots in your legs. They hooked me up to an IV.

When the time came I laid on my back and asked if I wanted a warm blanket. Always say yes. Studies have shown warm patients do better than cold. And then they wheeled me into the OR. I asked questions about the Plasma screen. And what stuff was. I told everyone what surgery I was having. Next thing I knew I was out.

Then I woke up and they were wheeling me into my room. I asked where my family was, they said they would be up shortly. I had been in surgery about 3 hours. I was in post op for several hours, and was wheeled up to my room about 6 PM. I had an IV in me, a catheter, a plastic hose in my nose for oxygen that you don't really notice, and the oxygen thing on my finger.

They showed me the buttons on my on-call thing. I turned the TV on. I was in no pain. They showed me a button to push to give me more pain medication if I was in pain.

My family showed up and I started to itch. They called in the nurse. I guess some people are allergic to the stuff in their IV, figures I would be I'm allergic to everything. So they gave me some benedryl and I got tired and went to sleep.

However, I had the roommate from hell, who kept hitting the nurse call button every 5 minutes, so much so that the nurses quit coming in to visit her. So, I got a fever. But, I woke up around 6 AM. The nurse came in and told me as soon as I felt like it I should get up and walk. I said I wanted to walk right then, I felt good and I wanted to get away from my moaning roomate (who had a gastric bypass).

Because I was still woozy, it took me a bit to stand up, and then I walked down the hallway and back to my room, about 1/4 of a mile.

It's good to chew gum and walk to get your digestive system working again.

I only felt a slight pressure in my stomach getting in and out of bed, but I learned what worked best for me. That was me strecthing out my arm, and having the nurse pull on it while I sat up. Once I sat up I could do the rest myself.

All the doctors were amazed that I walked that soon. So I guess I'm not normal. I moved up to popsicles and clear food, and once you fart, and everyone will ask you if you've farted yet, or to be polite, pass gas, Then you get real food. Once you poop you get to go home. Yeah....

I was low on potassium. I guess some people don't take potassium well in their vein. I didn't. It felt like fire going through my veins. So, make sure the nurses never leave whenever they put something new in you. At least for a few minutes. They can slow the rate down and give you a heat pack to take away the immediate pain I felt. I never felt pain after the first time.

But I was never in any real pain. Because my roomate was a pain and I got a fever, I got into a single room the day after surgery. My fever went down immediately after I got a good nights sleep. I was out of the hospital in 4 days.

I could go on and on about my great experience, so let me know if you have any more questions. I hope this helped to take the fear factor out of it.

cptmac · Regular Joined: 19 Apr 2007 Posts: 37

FYI you can also have no symptoms. On July 1st, 2003 I went to a walk in Dr. to get a refill for my food allergies. The Dr. there advised that I should get a colonoscopy, because I might have Chron's or IBS. And a colonoscopy would let me know for sure.

I said I was going to be gone a week for vaca, if I needed to rush. He said, oh no, it's not like I had cancer or anything. I didn't think I did, because I recently had a full physical and was stamped healthy. The reason being, all of my blood looked good and I have low blood pressure.

That's why my insurance company wouldn't pay for it, and the gastreoenterologist tried to talk me out of it, because I had no symptoms. But, I had done the prep work and thought, what the hey....

I just think it's important for people to know that you can be so sick and have no clue. I had no symptoms. The blood work does not include CEA.

GoingToBeatIt · Regular Joined: 28 Apr 2007 Posts: 19

The latest update:
Yesterday my wife had a colonoscopy. The found a small tumor about 30cm into her colon. All other parts of the colon are within normal limits. The rectum is normal (thank God). So this was a good outcome. The tumor is not the size of a bowling ball or anything. I guess she just was unlucky that it grew so quickly through the wall and went to the liver.

They biopsied the mass and marked it with dye. Today we meet with an oncologist.

One NEW question: Last night she had a fever of 101.5 and after calling the doctor, took some tylenol and it went down. Is this something to worry about? She is very lethargic today still. Can we rule out infection if the fever doesn't return???

GoingToBeatIt · Regular Joined: 28 Apr 2007 Posts: 19

The latest update:
Yesterday my wife had a colonoscopy. The found a small tumor about 30cm into her colon. All other parts of the colon are within normal limits. The rectum is normal (thank God). So this was a good outcome. The tumor is not the size of a bowling ball or anything. I guess she just was unlucky that it grew so quickly through the wall and went to the liver.

They biopsied the mass and marked it with dye. Today we meet with an oncologist.

One NEW question: Last night she had a fever of 101.5 and after calling the doctor, took some tylenol and it went down. Is this something to worry about? She is very lethargic today still. Can we rule out infection if the fever doesn't return???

cptmac · Regular Joined: 19 Apr 2007 Posts: 37

Great news about your wife's colonoscopy. It's always so good to hear great news like that.

I wanted to let you know that I heard that Theodore Eisentat at Wood is a great Dr.

http://www.acrsnj.com/doctors/Eisenstat.htm

A great oncologist is Michael Nissenblatt also at Wood

http://www.rwjuh.edu/physicians/physician_profile.aspx?physicianid=1010

She could be tired from all the tests and stress. She could be tired from the anesthesia from the colonoscopy. I went back to work after mine, but I heard not everyone fairs as well as I did. I think the fact that it went down is a good sign. It's good you're seeing the onocologist today. He will be able to answer your questions.

Also, I always took a tape recorder with me everywhere. I thought it was especially helpful when I saw the oncologist, because he was the one that told me about all of my options. After the appointment, I went home and transcribed the tape. Wrote down the pro's and cons of each and looked up info on the internet. e-mailed him with any more questions that I had and then made a decision based on that.

But, you can also just have him pick one as well.

I wish you the best. Good luck, we'll all be thinking of you.

GoingToBeatIt · Regular Joined: 28 Apr 2007 Posts: 19

So some more information:

Today we met with an oncologist at Overlook hospital in Summit NJ. They are pretty good reputation-wise and closer than Robert Wood. We'll use RW for a second opinion but we were encouraged by the consultation this afternoon.

Basically he's scheduling a PET scan for next week but starting treatment in the mean-time.

A port will be inserted next Tuesday the 8th.

Then starting 2 months of chemo, with Avastin and 5-FU administered with a take-home pump.

Some questions for those who've taken Avastin:
I've heard this is a great drug with positive results. I've also heard that this is an "aggressive" treatment of chemo. Should I infer from that there are a lot of things that could go wrong? I know my wife is really sick but lately I've been feeling that there is a LOT of hope for kicking this thing's ass. However, given that Avastin is only given to the "very sick" I'm a little over-whelmed thinking this might not be conquerable. I guess I'm confused or overwhelmed from all the information today.

I did record everything with my MP3 player, very handy, and I'll review everything tonight. I'm also starting to believe the Chemo will be the same at Robert Wood Johnson so why go out of your way to get to a doctor that's further away??? Overlook would be far more convenient travel-wise. Let's see what the 2nd opinion reveals. Definitely if surgery is considered in a few months we'll go to RobertWood as I think they have the best surgeons.

Any thoughts on the Avastin/Chemo therapy question folks? Any idea on the side-effects (I realize it's different for everyone).

-fs

GoingToBeatIt · Regular Joined: 28 Apr 2007 Posts: 19

My wife's CEA level is 237 !!! That seems insanely high. She has not started chemo yet, is this normal for a newly diagnosed patient???

Freaking out. would help if someone could reply back with their original CEA level.

cptmac · Regular Joined: 19 Apr 2007 Posts: 37

>My wife's CEA level is 237 !!!

That is actually kind of low. Most Stage IV's are in the 700 to 1,000 range.

I was shocked when I found mine out. Mine was lower, 123.4. When my oncologist told me after surgery rather pleased with the results, that it went down to 4, I was also shocked, but my doctor informed me that it would go down after chemo. After my first chemo??? I think it was my first, it went down to normal and has been normal ever since.

So, really, 237 isn't so bad for a Stage IV.

Did her fever go down?

cptmac · Regular Joined: 19 Apr 2007 Posts: 37

Also, I've thought about getting an mp3, is there any way to save that to a CD? I like to keep mine as a back up.

Thanks

GoingToBeatIt · Regular Joined: 28 Apr 2007 Posts: 19

Fever went down that night with some Tylenol thankfully.

So 237 is not bad ? I got scared as I'd read of a stage IV who didn't make it and was diagnosed with initial CEA of 290. I guess it doesn't exactly correlate to anything and really what matters is that it goes down with chemo.

I'm a little concerned that the Dr recommended chemo first before removing the primary tumor in her colon. I'm going to check with Robert Wood Johnson on Wednesday that they also recommend that course of action.

GoingToBeatIt · Regular Joined: 28 Apr 2007 Posts: 19

[quote="cptmac"]Also, I've thought about getting an mp3, is there any way to save that to a CD? I like to keep mine as a back up.

Thanks[/quote]

Yes, you just save the MP3 to your computer then back it up to CDROM or audio CD, whichever. I used the Creative Zen Vision:M player. Not all of them can record (e.g. ipods) so check the label.

-fs

cptmac · Regular Joined: 19 Apr 2007 Posts: 37

Thank you for providing me with the model number and everything.... Otherwise, when I go to the store, they might just give me the wrong thing.

I do type them all out afterwards, and I've always thought if their was only a way I could play and type on my computer. That will save me a lot of time. Thank you...

I think it is good to double check with another hospital. But some people do get chemo before surgery. It's to shrink the tumors before hand so that they don't have to take out as much. For me, it didn't make much difference. They had to take out so much either way, so shrinking it would not help.

Take care of yourself. Sometimes this is harder on the caregiver.

Also, discovery channel is doing a show on Sunday about cancer. They are interviewing one of Ted Koppels friends who has Stage IV colon cancer.

Elizabeth Snow is also being interviewed.

I know I'll be taping it. I have to work on Sunday. As I'm working today.

GoingToBeatIt · Regular Joined: 28 Apr 2007 Posts: 19

I have posted some details here:
[url]http://francisshanahan.com/detail.aspx?cid=575[/url]

And soon I'll be starting a blog with the various details as we continue on this journey. I'm hoping this'll be therapeutic as well as helpful for others newly diagnosed.

-fs

GoingToBeatIt · Regular Joined: 28 Apr 2007 Posts: 19

So my wife just finished her first chemo treatment of Avastin and 5FU w/Oxaliplatin, you can read the details here http://karenscancer.blogspot.com

The question I have is she just had her period like two weeks ago and today she just got it again. Is this normal? Doctor's have said it's nothing to worry about. Just want to double-check.

anyone seen this before?

Also, any tips on how to calm the nausea? She hasn't eaten much of anything the last few days. Can anyone recommend a good liquid-build-you-up type of drink?

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