CancerCompass message board discussion started by DinaZ on 4/29/2008 http://www.cancercompass.com/message-board/message/all,23550,0.htm Mon, 01 Dec 2008 00:00:00 GMT Mon, 01 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ For those of you who have been reading some of my posts, my Dad has Stage IV Colon Cancer.  He is half way through his first round of treatments, 5fu+ Oxiplatin+ Erbitux...and he is doing GREAT!  He is not sick, he is not losing weight, he is still going to work, his appetite is wonderful, is energy level is up and his blood work is perfect!We went to meet with his Oncologist today for a mis-point check up and he said that my Dad looks, "really well."  However, he said that he would not know anything for sure until he got a CT scan in another 4 weeks.  This made me really nervous.  I guess I was expecting him to say something more along the lines of, "I think your CT scan will show imrpovment."  That is not what I received.  Instead he told us to, "keep our fingers crossed" and that "we are giving this our best shot!"  After watching my Dad over these past few weeks and how he feels better and better everyday, I was hoping for more!  Besides the rash he has received from the Erbitux, the rest is seemingly unnoticed.I don't really know what I am posting for.  I think I just want to hear that since he is doing so well and his blood looks good that there WILL be an improvment in his CT scan in 4 weeks. Sorry for the rambling...and thanks everyone for all of your help. DinaZ Tue, 29 Apr 2008 00:00:00 GMT What are the specifics of his stage 4.  Mets to the liver, etc.  What was his CEA count on the more recent lab tests.  Has he had previious CT scans, PET scans etc.  What type of operations has he had if any? Arnold Tue, 29 Apr 2008 00:00:00 GMT He has cancer on his liver and abdomen...they are called "cancer seeds" as they are too tiny to have any measurable mass to them.  The only surgery he had was when he had the right side of his colo nremoved and a Colostomy Bag put in.  That was in February...this is only his first round of chemo...he started 4 weeks ago.  They said his CEA was 13 but I do not know what it currently is...although the doctor said that he is concerned with his CT scan not is CEA.  He gets another CT scan for re-evaluation in 4 more weeks.  I cannot stress HOW GREAT HE LOOKS AND FEELS!  Even when he comes home with the 5FU pump, he is fine...no side effects.  I need to believe that in 4 weeks from now a CT scan will show improvment! DinaZ Tue, 29 Apr 2008 00:00:00 GMT Sounds like things are looking up for you.  The CEA is not high and his feeling good is very important.  I had chemo and radiation for a recurrence in Dec last year and the cancer is gone!!  I'm currently on the pump too and have 2 to go.  The only side effect is my appetite.  I've been fighting this for 3 years and it is finaly paying off.  All the staying positive and doing what the doctors tell me.  I'll be praying for you and good results from the CT scan.  That is of primary importance. Arnold Wed, 30 Apr 2008 00:00:00 GMT Thank you so much.  Perhaps I am fishing here, but I would have to believe that the appetite, high energy level, etc. are all signs that the treatment is working... DinaZ Wed, 30 Apr 2008 00:00:00 GMT DinaZ-My mom is in the same situation.  The "cancer seeds" are not such a good sign as you know. (the formal term is "peritoneal carcinomatosis" if you want to google it)  My mom dx'd Feb 2007 and did 8 out of 12 FOLFOX treatments.  She had several scans after that which showed great response to the chemo.  Her CEA started at 12.5 and hovered under 1.5 for many months without any treatment.  (she did Avastin-only maintenance for a bit until she had a bowel obstruction from scar tissue)This past Feb her CEA has started to increase again and she has started Xeloda with the IV Oxaliplatin.  Hopefully this will decrease her CEA once again. The problem with the peritoneal disease is that it's always there, and often much too small to see on any scans.  You just have to attack it when it rages again.Best of luck to your Dad and you-I fully understand the rollar-coaster ride you're on.Christine Chrisobrn Wed, 30 Apr 2008 00:00:00 GMT I am just so confused.  Our research nurse told us that the "cancer seeds" were better than tumors with any sort of mass.  I was actually under the impression that the seeds were a good sign rather than a bad one.  I am completely sick to my stomach right now because I had no idea that there was so much severity with these seeds.  I have no idea what to think now. DinaZ Wed, 30 Apr 2008 00:00:00 GMT Another case of caregiver playing doctor.  Be very carefull in your descriptions of difficulty of disease type.  These socalled seeds may or not be difficult depending on the overall condition of the patient.  The patience attitude and overall demeanor are also very important.  The fact that they are doing a CT scan provides an indication that the doctor will be able to "view"  the results before making a determination.  The low level of CEA is also a very positive point.  I hope this helps. Arnold Wed, 30 Apr 2008 00:00:00 GMT Thank you, Arnold.  I am just trying to learn as much as I can so that I can help my family.  It is so impossible to hear one thing and see another.  He looks AMAZING!  I cannot accept the fact that this disease will take him from me when he seems to be winning the battle.  I know I have to wait until the CT scan to know for sure, but I specifically asked his research nurse if the seeds were better than tumors and she said, yes.  I know I am not crazy...I remember her saying that to me and I immediately called my Mom.I've been so strong with all of this, so positive and strong.  I feel myself falling apart... DinaZ Wed, 30 Apr 2008 00:00:00 GMT We were all devastated last year when I had the recurrence.  They operated and couldn't take out the tumor.  I then had radiation and chemo in Dec and the scans they did in Feb showed the 5 cm tumor was gone.  We kept our faith and positive attitude going thru the last three years and it has paid off.  Please don't " fall apart".  Listen to your doctor and stay strong.  Every one who reads your posts will praying for you.  Arnold Wed, 30 Apr 2008 00:00:00 GMT Thank you Arnold.  I am so happy that you are winning this long battle.  You are such an inspiration to my father and I.  It is people like you who prove that cancer is not a death sentence...and my Dad will not take it as one either. DinaZ Wed, 30 Apr 2008 00:00:00 GMT This may sound phony to some but I consider myself a soldier in this fight.  I am 71 years old and I get up 5 days of the week and go to the gym.  I do 12 to 15 miles on a stationary bike.  I don't feel like going some dasys but I do it.  I remain positive and listen to my doctors.  They saved my life.  We try to live as normal life as we can.  We stay close to family and friends and DON'T LOOK BACK>  I pray every day for all of us who are in this fight!!  Arnold Wed, 30 Apr 2008 00:00:00 GMT You are like my Dad in a way.  He is 60 but he is a rough contruction worker,  He is still working out doors every day (for atleast a couple of hours) and building houses.  He is in wonderful shape and he has a wonderful attitude.  He always says that he knows he can beat this and he will not die from it...he promised me.  I know this sounds ridiculous, but I believe him!  I just have to believe his CT scan will be ok...I don't know what else to do.That is amazing that you work out every day.  Most people at the age of 71 are surely not in your physical shape.  I would have to think that plays a major roll in your health and overall recovery.  Congratulations! DinaZ Wed, 30 Apr 2008 00:00:00 GMT DinaZ-I have sent you a private message.Christine Chrisobrn Wed, 30 Apr 2008 00:00:00 GMT Drs. aren't going to give you anything other than test results which is too bad.  Don't worry about the CT scan...it's routine testing.  I have colon cancer with mets to the liver and have undergone two surgeries and chemo twice.  My CEA level went up instead of down so now the next step is a PET scan in a few weeks.  My dr. said he hoped for the best.  I can't dwell on it and won't let it worry me to death.  I live each and every day to the fullest and give it all to God.  I'll be praying for you and your dad. elaine57 Thu, 01 May 2008 00:00:00 GMT Hi. My dad was diagnosed with Stage IV colon cancer last May.  It has mts to the liver.  A year ago they said the liver was so bad there was no hope - surgery was not an option.  One year later, the liver tumors have shrunk 80% but they are still not able to operate yet.  But, there is hope.  Next week, he will be getting the pump put in and  the tumor removed from the colon.  Can anyone tell me their experience with the pump.  What are the side effects?  Is it really as effective as everyone says?Thank you. cancerdaughter Thu, 01 May 2008 00:00:00 GMT What pump are you refering to, CancerDaughter? DinaZ Thu, 01 May 2008 00:00:00 GMT  Hi.  A small pump containing anticancer drugs is placed in the body. The pump puts the drugs directly into the blood vessels that go to the tumor. The purpose is to achieve greater exposure to the liver cancer than could be achieved by chemotherapy drugs that go to all parts of the body.  He will still get his regulary IV chemo but, in addition, the drugs will be pumping directly in to the liver.  The hope is that it will shrink the liver tumors enought so that surgery is an option.  I have heard a lot of great things about the pump but I don't know of anyone who has used it.  cancerdaughter Thu, 01 May 2008 00:00:00 GMT Hmmm...my Dad has a pump but it is not inserted in his body.  He receives the pump on Wednesdays and gets it removed on Fridays and it pumps his chemo into his system for 48 hours straight.  I am sorry.  I wish I could give you info on he pump you are asking about. DinaZ Thu, 01 May 2008 00:00:00 GMT The CEA is useless and the CT is as well.After the CT, make certain he has a PET Scan.Even with all these tests, no one knows what is going on in the body, until they are in there surgically.My Mom had so many tests prior to surgery, and a CEA of 4.Doctor opened her up, and she was L O A D E D   with cancer.I pray the best for your Dad and ask you do the same for my Mom.Beth Njtwinmom Fri, 02 May 2008 00:00:00 GMT Both CT scan and CEA evaluation have value when used appropriatly.  The CT scan showed a recurrence of colon cancer in Sep, 07.  A PET scan was then accomplished along with anotrher CT scan.  They were overlayed and the end result was a clear determination of the size and vitality of the growth.  Surgery showed clearly that the tumor had encased a major aorta in the pelvic region.  They could not take it out bcause of the danger involved in damaging the aorta.  They then did radiation and xeloda for 35 days in Dec 07 and eliminated the tumor.  The CT scan was very important and adequatly identified the size and placement of the tumor.  My current CEA evaluation are being used to identify protein levels that will increase if there are microscopic cells that can't be picked up by any scanning device.  Since they have a baseline of my CEA levels going back three years, they are able to identify increased activity.  I am currently on folfox, etc for a total of 4 months to eliminate these microscopic cells and attack any specific recurrence. Arnold Fri, 02 May 2008 00:00:00 GMT A word of caution.........CEA is not always present......even with a 6 cm tumor, my CEA was 2.7 and never rose.  As such, I cannot be monitored by CEA levels alone....... AngelwithAttitude Sat, 03 May 2008 00:00:00 GMT No one is monitored by CEA alone - when it is available for an extended period of time it can be valuable.  To state that it is no good is not accurate.  It has been usefull in my case. Arnold Sat, 03 May 2008 00:00:00 GMT  On 5/1/2008 cancerdaughter wrote:Hi. My dad was diagnosed with Stage IV colon cancer last May.  It has mts to the liver.  A year ago they said the liver was so bad there was no hope - surgery was not an option.  One year later, the liver tumors have shrunk 80% but they are still not able to operate yet.  But, there is hope.  Next week, he will be getting the pump put in and  the tumor removed from the colon.  Can anyone tell me their experience with the pump.  What are the side effects?  Is it really as effective as everyone says?Thank you.Hi cancerdaughter,Has anyone ever discussed RF Ablation for the liver tumors? I had it April 7th for a kidney tumor and returned to work in Iraq on the 25th. I go home in August and have to do another mri, the doc said that we may need to do another burn. I had a radical neph on the left side last April so my doc agreed that RFA was the best option with only one kidney.something to think about.Mark markg1800 Sat, 03 May 2008 00:00:00 GMT Have you heard of a pet/cat scan...one that does both? Denise3278 Mon, 05 May 2008 00:00:00 GMT Our doctor told us the same thing, that he cannot base progress on the CEA alone because my Dad's CEA has always been low considering the degree the canncer has spread.  However, he said that from the CT scan he would be able to see everything.  Assumptions are never a good idea but I have to ASSUME that the way he is acting/ functioning right now and the way he looks, feels, etc. must mean that his treatment is working because he did not feel this good before he started treatments. DinaZ Mon, 05 May 2008 00:00:00 GMT