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Very Depressed :(

jcavanaugh
Posts: 100
Joined: Mar 2004

Where to begin. My dad has stage IV. Diagnosed May 2002 (many operations, treatment regimens, etc...). It is hard for me because I am not the patient and I feel that I would do some things differently. I know that having to receive these awful drugs and surgeries stinks but I want my dad to get more opninions and be more pushy with the doctors. I do not understand his relaxed attitude. On the other hand, I am grateful that he is not super stressed about his disease because that would not be healthy. I guess I am just depressed because since October 2006, we have never had good news. All the blood tests and scans have pretty much said the same thing (cancer in liver and lungs - no real change). Now his cea is the highest that it has ever been (260). I am perplexed because it was in the 30s during December and went to 160 around February and now 260. During this time, he was on 5 flu constantly (pump) and received erbitrux once a week. He had the rash everywhere and the doctor thought that was a sign that it was working. Plus, his ct scan in mid-February showed no change from the scan in December (status quo is what the doctor said). This despite a cea of 160. At the time the doctor even mentioned that the high cea could be because of dying tumors (cannot see if they are dead on a ct scan - cysts when they die - or scar tissue). Has anyone out there had a similar experience? As I posted earlier, he has not had treatment since the end of March due to port issues and low red blood cells. Will start again on Monday. Thank God!! Up until two weeks ago, my dad could bike 14 miles with no problem. I am 32 and probably am not in shape to do that. Now, since right before and right after the blood transfusion (while off of treatment), he has been really weak. Doctor mentioned that this was because of the cancer in his liver - never heard that before and cannot find anything on the web to back it up. Now that I know his latest cea number, I am thinking the worst and even more depressed. I had finally gotten to the point where I did not think about it all the time because I began to view his cancer as a chronic disease that we would treat since he was 100% healthy otherwise. I have lost my hope in that. I really need to get it back.

sladich's picture
sladich
Posts: 430
Joined: May 2007

Hang in there. I've known a couple of Stage IV survivors that were on treatment the entire time. Quality of life wasn't bad. I've never heard that your CEA would rise with dying tumors. Your dad is weak because of the chemo not the tumors in his liver. I'm the cancer survivor and don't know how it feels to be the caregiver. However, I do believe the caregivers have the toughest job of all. Think positive thoughts and hang in there. Your dad needs you now more than ever.

Debbie

pamness
Posts: 527
Joined: Nov 2007

CEA - is a very tricky thing - works for some - not for others. I am a cancer survivor - although a newbie so I can't add much. But it sounds like your Dad has good attitude and is not making unreasonable choices - I wish you all the best. It also sounds like you are depressed and he is not. I can't give you any medical advice - but it's great to know he is Ok with this. I don't know how old your Dad is, but even with just Folfox and chem/rads I was wiped out for 6 months after treatment ended. I was stage 3A. I hope things improve - but it does take lots of time. Is your Dad being treated at a major medical center?

lv2scrap
Posts: 44
Joined: Jul 2007

I am in the same boat as you. My dad has been fighting since 12/06. Stage iv with mets to lungs and bones. CEA started at 1500 and dropped as low as 76. He did really well with all the treatments. We were told in August 2007 to prepare ourselves that the CEA was rising. We continue with chemo untill he started having strange reactions to it. He has not had chemo since Dec. 2007. Doctor says there is nothing further he can do. CEA in December was around 1600 again. He is now starting to get very weak and tired. Does not want to get out of bed. He has oxygen because of the lung mets. He is on a wait list for a clinical trial which could take 2 months. The new doctor said it again. I need to prepare myself. I don't know what to think. I just know that I am so exhausted. He lives with me since he got diagnosed. He was walking 5 miles and still working up until Dec. 2007. It is really taking a toll on my family. I also have 2 small kids, a husband and work. I have also been having to fight the insurance for different things. I know your pain. I know that I am doing everything that I can. Know that you are not alone. Best of luck.

Lv2scrap

funnyguy
Posts: 90
Joined: Jan 2007

You sound very anxious for your Dad.

Just remember he needs you to show him your positive side too. I'm a survivor but have also been a caregiver. In both cases I found it very helpful to try to focus on the little victories and simply take one day at a time.

It's easy to get depressed and hard to be positive I know.

But the mind and body are so much stronger when we think of a happy experience or positive moment. Get out a scrap book of great times, or plan a bike ride with your dad (for however far he can go). Enjoy what you have and don't let the negatives of the treatment grind wear you down.

Remember, there is always HOPE.

Cheers,

rmap59
Posts: 266
Joined: Jun 2007

Hi,
Please try and stay positive. I think the fact that your Dad has a relaxed attitude is great because a lot of beating this disease is about attitude. I have been on both ends, a cancer patient/survivor and now a caregiver for my Mom dx with BC 6 weeks ago. I can tell you right now the caregiver is much harder because I am not in control of the situation, and yes I have had some of the same thoughts about my Mom needs to take more control but she seems satisfied with what is going on with her treatment so I should be too. I am taking her for a wild flower drive tommorrow. Spend quality time with your Dad and try to stay upbeat.
Robin

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

Everyone who's posted has already given you the best possible advise, so all i can add is my hope and wishes that your dad gets through this. Keep coming here and read the posts. So many stage IV's are surviving, even if it takes years. I have two uncles who've had this disease, and one of them died from it. He lived with it for 25 years though, so it can be controlled if not cured. And new stuff is always coming out.

My best wishes, and many hugs!
Krista

hopefulone
Posts: 1048
Joined: Jan 2007

Hi. Urge your dad to get that second opinion. I will say also that CEA rise can be due to cancer cells dying so we were informed by hubby's onc,so there may be some truth to that. Keep the faith. There are many stage IV survivors here, including my husband who is currently NED. !
God Bless

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