Hello..and Help

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pizzaman
pizzaman Member Posts: 3
edited March 2014 in Colorectal Cancer #1
Hello, i am the 28 year old son of a cancer survivor, she was dx in 03 with stage 2 colorectal cancer and went through 6months of 5fu, only to have it come back and spread, she went through the last 6 months on 48 hour 5fu treatment, her CEA fell from 170 to 25 but a recent scan shows there is 10% growth and new infected areas, I go with her to all of her onc appts. but do not ask too many questions because she upsets easily. From what i can understand she is at stage 4 now and will begin an oxcilliplatin (sp?) regimen next week, i have done the research and understand the side effects. I am just wondering how the CEA level can drop and there still be growth. are there any questions that i should ask her onc. about her condition...

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  • nudgie
    nudgie Member Posts: 1,478 Member
    #2
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    When is was DX with Stage II colon cancer were there any Lymph nodes affected? Did is ONLY get 5FU for the 6 months and NO other drug? The reason for these questions is that I was DX in 06 with Stage II NO/MO colon cancer and tumor removed in 06. I am currently on the FLOFOX chemo treatment of 5FU, Oxaliplatin and Leucovorin every other week for 12 treatments. I have had my 6th on 3 November. From what I understand this treatment is somewhat new, I think 2004.

    I would recommend that you and Mom discuss ALL treatment options with your Onc Doc and also maybe get a second opinion.

    Find out exactly which Chemo regime and drugs. Ask, ask and re-ask questions. Make sure you and your mother take control of your treatment regime.

    Remember, NEVER stop asking questions and researching. Use the American Cancer Society website and the National Cancer Institute website for research and this discussion board will help more than you realize. I am 42 years old and have had a real hard time with this treatment and DX, but the people on this board and my family have gotten me this far.
  • mindy10
    mindy10 Member Posts: 182 Member
    #3
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    Hi, my dads Dr. never went with the CEA Levels. He said the most important thing is to go with the results of the cat scans. Where are her affected areas? Are the tumors operatable. All i can tell you from experience is take day by day. Be there for her. Dont drive yourself crazy wondering how long she will live or if the cancer will go away. Only God knows that, not even the Dr's. There is alot of people on here that are stage 4 and are still around 2 years later. Just make sure her wishes are met. If you dont want to ask questions with her around call the Dr when she is not around and ask questions. if you have any questions please feel free to ask. Mindy
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    #4
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    nudgie said:

    When is was DX with Stage II colon cancer were there any Lymph nodes affected? Did is ONLY get 5FU for the 6 months and NO other drug? The reason for these questions is that I was DX in 06 with Stage II NO/MO colon cancer and tumor removed in 06. I am currently on the FLOFOX chemo treatment of 5FU, Oxaliplatin and Leucovorin every other week for 12 treatments. I have had my 6th on 3 November. From what I understand this treatment is somewhat new, I think 2004.

    I would recommend that you and Mom discuss ALL treatment options with your Onc Doc and also maybe get a second opinion.

    Find out exactly which Chemo regime and drugs. Ask, ask and re-ask questions. Make sure you and your mother take control of your treatment regime.

    Remember, NEVER stop asking questions and researching. Use the American Cancer Society website and the National Cancer Institute website for research and this discussion board will help more than you realize. I am 42 years old and have had a real hard time with this treatment and DX, but the people on this board and my family have gotten me this far.

    Back then, especially, doctors did not put Stage II patients on chemo unless lymph nodes were involved. Oxaliplatin was not yet approved by the FDA, or just was and if lymph nodes were involved (Stage III) they gave 5-FU and Leukovorin first. I was diagnosed in March of 02 and I did the 5-FU and Leukovorin for 6 months. In 03 I was found to have a liver met and was given Xeloda and Camptosar. I was never put on Oxy.....Now it seems more commonplace and honestly I am shocked how many Stage II patients are recommended for chemo now days.
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    #5
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    Hi Pizzaman,
    I would recommend that you ask the doctor if you can e-mail him. As a matter of fact, is there an e-mail address on his card?
    Otherwise, you could just make a list of your questions, hand it to him and ask that he give you a call. That way you do not disrupt your mother and you can still get the answers you want.
    How old is she? Also, please add in a little more info, where did it spread to? How extensively?
    As for the CEA, I had 2 lung mets with a CEA of 0.9. It is very variable from one person to the next and indeed, the CT scans are really what you should rely on.
    If there is a steady increase in CEA that can indicate that something is going on, however, you can have a decrease and still have cancer in your body somewhere.
    It only means she has less cancer than she had originally....
    Good luck to you and your Mom,
    Susan.
  • pizzaman
    pizzaman Member Posts: 3
    #6
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    shmurciakova said:

    Hi Pizzaman,
    I would recommend that you ask the doctor if you can e-mail him. As a matter of fact, is there an e-mail address on his card?
    Otherwise, you could just make a list of your questions, hand it to him and ask that he give you a call. That way you do not disrupt your mother and you can still get the answers you want.
    How old is she? Also, please add in a little more info, where did it spread to? How extensively?
    As for the CEA, I had 2 lung mets with a CEA of 0.9. It is very variable from one person to the next and indeed, the CT scans are really what you should rely on.
    If there is a steady increase in CEA that can indicate that something is going on, however, you can have a decrease and still have cancer in your body somewhere.
    It only means she has less cancer than she had originally....
    Good luck to you and your Mom,
    Susan.

    My mom is 56, sorry all for the lack of info, her cancer spread to one of her ovaries and there are also spots elsewhere in her pelvic region, the first regime consited of 5fu, Leukovorin,and a couple of others, i will have to try to find the information. I think the email or list of questions are a great idea, i will put that to use, although living in a small town we have one ocn that comes one day a week. We use to drive to a city a few hours away but the ocn was very upsetting to her, very "doom and gloom" with the recurrence.
    also if anyone can help me find new ways to comfort her during her "bad days" please help me, i am running out of ideas. Extended family just doesnt understand what she is going through and only see her when she is starting to come back around after treatment, they have no clue.
    thank you all for the responses. they are very helpful.
  • vinny3
    vinny3 Member Posts: 928 Member
    #7
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    If the spread is confined to the pelvis have they considered radiation, or has she had it? If she has not had it and the area is amenable to radiation then they often combine that with 5-FU. The CEA is not a reliable indicator for alot of us. Mine was never above one, with the first diagnosis nor with the recurrance. However, with a significant rise in the value one would need to look for spread.

    ****
  • spongebob
    spongebob Member Posts: 2,565 Member
    #8
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    Ahoy, Pizzaman (you sure it isn't that pesky Land Shark?)

    First let me say how awesome I think it is that you are being so supportive and such a great advocate for your mom.

    First, you must adopt the mindset that her oncologist works for HER not the other way around. S/he is being paid a lot of money to provide advice and recommendations that you mom needs to approve. Mom's the boss. You sound like you will make a great "agent" for your mom in dealing with her medical team.

    Next; as many of my cohorts have said - ASK ASK ASK. You can never ask too many questions. I would suggest strongly that you write them down - or as Susan suggested, send an e-mail. By writing them down you don't forget anything. By sending an e-mail you will get the answers in writing.

    Susan and Nudgie are both right about the "new" treatment regimes. There are even newer treatments out there Centixamab and Pantimab (I know I mis-spelled those, Nanuk, can ya help me out brother?) are showing amazing results. I have been reading about new chemo regimes lately.

    As for CEA, CEA is a measurement of Carcinoembryonic antigen in the blood. It's an enzyme produced by cancer cells. Just because the number goes down doesn't mean they're all dead - and it only takes a few cells to get a colony started. It's great her CEA fell, but it is still outside the "normal" range. In addition many of us - myself included - don't react to the CEA test. When I had active disease, my CEA was hovering around '1'.

    Anyway, ask the questions. Look back at old discussions here - we have over 400 pages of valuable info (with a few jokes, snivvels, and banters included for good measure), read what others have asked and see how that factors into your questions. There is also a wealth of experience/information right here ready and willing to answer any questions you may have.

    Cheers

    - SpongeBob
  • pizzaman
    pizzaman Member Posts: 3
    #9
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    spongebob said:

    Ahoy, Pizzaman (you sure it isn't that pesky Land Shark?)

    First let me say how awesome I think it is that you are being so supportive and such a great advocate for your mom.

    First, you must adopt the mindset that her oncologist works for HER not the other way around. S/he is being paid a lot of money to provide advice and recommendations that you mom needs to approve. Mom's the boss. You sound like you will make a great "agent" for your mom in dealing with her medical team.

    Next; as many of my cohorts have said - ASK ASK ASK. You can never ask too many questions. I would suggest strongly that you write them down - or as Susan suggested, send an e-mail. By writing them down you don't forget anything. By sending an e-mail you will get the answers in writing.

    Susan and Nudgie are both right about the "new" treatment regimes. There are even newer treatments out there Centixamab and Pantimab (I know I mis-spelled those, Nanuk, can ya help me out brother?) are showing amazing results. I have been reading about new chemo regimes lately.

    As for CEA, CEA is a measurement of Carcinoembryonic antigen in the blood. It's an enzyme produced by cancer cells. Just because the number goes down doesn't mean they're all dead - and it only takes a few cells to get a colony started. It's great her CEA fell, but it is still outside the "normal" range. In addition many of us - myself included - don't react to the CEA test. When I had active disease, my CEA was hovering around '1'.

    Anyway, ask the questions. Look back at old discussions here - we have over 400 pages of valuable info (with a few jokes, snivvels, and banters included for good measure), read what others have asked and see how that factors into your questions. There is also a wealth of experience/information right here ready and willing to answer any questions you may have.

    Cheers

    - SpongeBob

    thank you again for your replies. It is already helping me come up with new questions to ask. I need to understand this as much as possible. Mom will often look to me for answers, i used to ask in the onc appts. but after the reoccurance it seems to upset her way too much to hear some of the answers. Nice to know there are people out there that are willing to help...Thank you so much.
  • KathiM
    KathiM Member Posts: 8,028 Member
    #10
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    Hello. My CEA was .5 before any treatment. I was stage III rectal, but squamous cell instead of adeno. CEA has NEVER been a good indicator for me, and maybe mom's new areas are like that. CT Scans and PET scans are the best for me....

    Try to get mom into something familiar activity each day. And laugh. I hate to lose, so with both my rectal cancer, and the breast cancer followed 3 months later...I fought like HECK...that darn beast WOULD NOT WIN!!!!!
    According to the stats, I was supposed to pass in June of 05...still here, unless I haven't been told something....hummm....

    HUgs, Kathi

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