what do you think?

Husband had chemo yesterday, so after battling this for over 18 months we try to be pro active in his care, so we been following his CEA levels and I was taken back by the response from the male Nurse who I always felt he was a good Nurse and being helpful to us, They have my husband on new treatment Erbutux/Com and it seems to being doing well on it levels were high, 190 down to 118 down to 37 now 1.9 we were thrilled, so my husband said to him well Mark what if it goes under l. 0   Mark said that would be what we call unreal to think of.  And followed with don't get to hooked up on the # 's , well we do know you have to take in account the MRI's and the pet scan also, but you could of knocked the sails out from under my poor husband reaction, I said we both no there is no known cure for Colon Cancer But it may be any day, and as far as I am concern we should be happy the count is CEA levels is so good , we are not fools but you think he could of showed alittle  positve reaction to someone who is trying so  hard to get through this awful cancer.  I will have appt with Dr. soon and I will bring this up,  Just was wondering how anyone else would respond , If barb.rob or Joann would respond only because I know you all been fighting this for long time.   Always open to any info, thanks  I was not  at Chemo  or I would of pulled that young man aside and let him know how I felt at the time,

My Dad has been fighting stage 4 colon cancer for about 17 months.  We had the same thing happen to us, we're told to watch the CEA numbers and Dad's were going down and down and down and yet then as we were getting SO happy about it we're told they're not always dependable.  SO frustrating!  IT's like you are given a goal and once you reach it they put something else out there and you never feel like you're really "there".  It's SO important that you celebrate these things!  That is what your spirit and your husbands spirit need.  Don't let what the nurse said get you down at all.  I will say that what we learned is nothing is completely accurate is telling us how Dad's cancer is doing (PET Scans and CT Scans will not show cancer if it's really small etc) but between Dad's CEA number, his latest scan results/labs and how his pain is overall tells us all we can really know.  The nurse is wrong though when he says it's unheard of to have a CEA below 1.  You're pretty much there anyways if you're a 1.9!  They say that being  below 5 is in a normal range so you and your husband have reason to celebrate!   In most cases a CEA level continuously going down means there is less cancer so you have all the reason in the world to be optimistic!  When it comes to stage 4 cancer I think it's best not to put all your eggs in one basket but every good CEA level result is a good thing.  Every scan not showing more growth is a good thing!  Every treatment under your belt is a good thing....let yourself be happy and don't let those critical people in the medical world take that away!   I do think that you're right to say something to your oncologist or that nurse if you see him again.  Sometimes they see this cancer stuff so much they become numb to it and forget that we're all people and not just another case!  You may make a difference for the next person that nurse sees! 

I would not be to hard on the nurse that made the remark concerning the CEA marker.  I am currently under chemo treatments and have been fighting now for over 4 years with colon cancer.  Everytime I go for treatment I observe the six nurses that run around my center providing daily treatment to all us weak sick people.  I look at the nurses who usually always have a big smile and wonder to myself how they provide this tender care day after day  to all of us. 

 I understand your husband and you expect positive remarks from the nurses but if this was a one time comment I would not make too much out of it.  I ask my Doct for my CEA marker results often too and he always gives the same remark that your husband's nurse made.  The Doct always informs me not to hold much weight in the CEA marker which confuses me since every time its elevated he seems concerned and request some test either: Pet, Cat or MRI.  You would think if the marker is low they should be happy for us as patients/care givers.  Although, they always seem as its a very poor judge for determining cancer in the body. 

Not sure if this is the response you were looking for.  I'm sure your husband and you are glad to see the marker low.  I always like seeing the maker getting lower because in my mind I feel as the chemo is working and all the ugly side effects can than be tolerated or worth it.  Positive thoughts to the both of you. 

 

On 9/17/2009 HIGH STRUNG DAUGHTER wrote:

My Dad has been fighting stage 4 colon cancer for about 17 months.  We had the same thing happen to us, we're told to watch the CEA numbers and Dad's were going down and down and down and yet then as we were getting SO happy about it we're told they're not always dependable.  SO frustrating!  IT's like you are given a goal and once you reach it they put something else out there and you never feel like you're really "there".  It's SO important that you celebrate these things!  That is what your spirit and your husbands spirit need.  Don't let what the nurse said get you down at all.  I will say that what we learned is nothing is completely accurate is telling us how Dad's cancer is doing (PET Scans and CT Scans will not show cancer if it's really small etc) but between Dad's CEA number, his latest scan results/labs and how his pain is overall tells us all we can really know.  The nurse is wrong though when he says it's unheard of to have a CEA below 1.  You're pretty much there anyways if you're a 1.9!  They say that being  below 5 is in a normal range so you and your husband have reason to celebrate!   In most cases a CEA level continuously going down means there is less cancer so you have all the reason in the world to be optimistic!  When it comes to stage 4 cancer I think it's best not to put all your eggs in one basket but every good CEA level result is a good thing.  Every scan not showing more growth is a good thing!  Every treatment under your belt is a good thing....let yourself be happy and don't let those critical people in the medical world take that away!   I do think that you're right to say something to your oncologist or that nurse if you see him again.  Sometimes they see this cancer stuff so much they become numb to it and forget that we're all people and not just another case!  You may make a difference for the next person that nurse sees! 

   well thank you for taking time to respond,  of course his stage 4, we know what we are up aganist but I try to be positve with him and I must say I don't want anyone bringing him down,  because I keep telling him we do what have to and make sure we stay on top of things,  He been through so much and he is fighting everyday I guess I was being to protective of him,  Best to you and your father,  Bless you Both,

 

On 9/17/2009 robertpa wrote:

I would not be to hard on the nurse that made the remark concerning the CEA marker.  I am currently under chemo treatments and have been fighting now for over 4 years with colon cancer.  Everytime I go for treatment I observe the six nurses that run around my center providing daily treatment to all us weak sick people.  I look at the nurses who usually always have a big smile and wonder to myself how they provide this tender care day after day  to all of us. 

 I understand your husband and you expect positive remarks from the nurses but if this was a one time comment I would not make too much out of it.  I ask my Doct for my CEA marker results often too and he always gives the same remark that your husband's nurse made.  The Doct always informs me not to hold much weight in the CEA marker which confuses me since every time its elevated he seems concerned and request some test either: Pet, Cat or MRI.  You would think if the marker is low they should be happy for us as patients/care givers.  Although, they always seem as its a very poor judge for determining cancer in the body. 

Not sure if this is the response you were looking for.  I'm sure your husband and you are glad to see the marker low.  I always like seeing the maker getting lower because in my mind I feel as the chemo is working and all the ugly side effects can than be tolerated or worth it.  Positive thoughts to the both of you. 

 Thank you for your response, I guess we want  hope so badly that we don't want any nagitive responses.   All I have heard is that it is important the CEA levels stay low along with all the other way they measure how he is doing , No side effects from all the chemo, maybe just little.  other then that he is doing fine so far, I hope the best for you also,  I will take postive anyday and you stay positive 4, yrs that is impressive. Bless you

I think that sounds good his numbers are coming down, with my husband the highest his ever got got was 4.7 he had stage 4 on chemo 6 months switched chemo to eributx and something else but he wasn't tested for the kras mutation  he was tested later and it showed he would not respond to that chemo drug , so make sure he gets tested for the kras  gene when taking eributx. now my husbands numbers stayed low but the tumors were growing so fast and he had so many  on the outside of his intestines that did not show up on the cat scan  already had the colon surgery  to remove the tumor but alot of cells got out i guess and thats when the  6 months of chemo kept everything small when that finished  two months later things are showing up so just be aware of what is going on with your husband and ask about everything with the DR's sorry if this is sad but i know exactly what you are going threw ,When are dr kept saying his numbers are low  thats god but really the cancer was there and growing fast  For me i just found things out to late when i should of been asking them  at the time they were caring for my husband but you get so overwhelmed with  everything  going on its hard . I wish you and your husband the best and always think positive that he will beat this and be with you forever.

 

michelle

Thank you for your response I have heard the same thing you can have low #'s but  it could be getting out of control,   Yes he was tested or he wouldn't be on the Erbutux,  She said not to worry he tested .  Well it is combination of everything and yes we just are taking one day at a time.   Hope your husband is doing well, or if not I 'm sorry. Thank you for the information ,,,,

He did pass away april 16th 2009  fought hard for 17 months

 

michelle

HI,

 Just read your post, and our feelings are this, For every good moment in your life CELEBRATE IT. your CEA numbers are important, and from 190 to 1.9 that is fantastic and you both should CELEBRATE .. this journey is long and many  bumps in the road but having a positive attitude is very very important, and  any good news no matter what it is, give yourselves a huge hug and smile and crack open the bubbly, and do NOT let any one tell you different and take no notice of any negative attitudes,   its a huge emotional roller coaster with much bad news along way but when you get good news JUMP FOR JOY AND  DANCE.. life is so short for every one, no one knows how many days we have left, but every time you see the sun rise Thank God for another day together and when you see Sun set,, again Thank God for getting you both through another day, and in between do as much as possible together ... LIVE LOVE AND LAUGH ..

  Keep going and make most of the time you have  Enjoy each other  and smile  and then smile again....  Do not let this evil disease  rob you of any joy...  ..BEST WISHES  ..... ROB AND BARB

Thank you for responding I was just alittle shocked I'm over it, your right this is up and down climb, take what ever good we can get , You both take care and may God bless you both, Thank you Pat,