latest CEA results- not good

lisa42
lisa42 Member Posts: 3,625 Member
Hi,

Got my lab results back this morning from Friday's blood draw. It's been three weeks since my last CEA check. It went up 132 points in three weeks. It now sits at 727.6 That's a pretty scary number & I've felt myself getting worse and weaker the past couple of weeks. I guess this probably means the natural extract I've been taking since Dec. 2 isn't working (nor is anything I've been doing, I guess).

Also, two of the three measured liver enzymes are slightly elevated. The nurse today told me it was slight, so not a huge concern. My concern is that last time just one was slightly elevated. The time before that- none. I have been getting stabbing pains in the area of my lower liver lately too. The ultrasound I recently had done on my abdomen showed nothing out of the ordinary except "multiple liver metastasis". I have a big lump that sticks out from there- I think it must be my liver swollen with tumors sticking out there, since "no abdominal mass seen" was written on my ultrasound report & all the organs showed as normal.
«13

Comments

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    Lisa

    {{{HUGS}}}

  • pepebcn
    pepebcn Member Posts: 6,331 Member
    PhillieG said:

    Lisa

    {{{HUGS}}}

    Lisa
    HUGS as well, praying for you!
  • toyfox
    toyfox Member Posts: 158 Member
    Lisa
    More Hugs
    Linda
  • thingy45
    thingy45 Member Posts: 632 Member
    toyfox said:

    Lisa
    More Hugs
    Linda

    Many hugs and as always in
    Many hugs and as always in my prayers.

    You never walk alone,
    Marjan
  • tommycat
    tommycat Member Posts: 790 Member
    The huge disappointment and
    The huge disappointment and fears come through your written words...God Bless you Lisa. May something turn around for you--stat.
  • tanstaafl
    tanstaafl Member Posts: 1,303 Member
    aim steady...
    Maybe not doing nothing, just not stomping the cancer flat. A lot of what my wife takes is supportive, greatly ameliorating chemo or cancer symptoms to keep the body functioning as well as possible, where we can measure it in blood tests, visually like in 5FU-folate toxicity to eliminate early stomatitis over a year ago, or overcoming fatigue.

    Although the mild immunochemo we use appears not to kill all the masses above micromets (2-4 mm) outright, where some things dissolve but not all, we still use it to slow them down. Between your onc, perhaps another "more biochemical" naturopath, maybe John23's type formula, we hope that you can wring another CEA slowdown or reversal out. You seem to have always made some progress by going forward.
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Big Sigh.....
    I'm with the rest of the group....

    (((Lisa)))

    I'm just speechless...my heart is heavy.

    -c
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    Sundanceh said:

    Big Sigh.....
    I'm with the rest of the group....

    (((Lisa)))

    I'm just speechless...my heart is heavy.

    -c

    heres another
    one for ya i hope you can feel the love((((HUGS))))...Godbless...johnnybegood
  • tko683
    tko683 Member Posts: 264 Member
    so sorry to hear
    I am thinking of you and sending more prayers your way....Hugs, Teri
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    Dear Lisa
    You are in my thoughts and prayers.I admire your strength, courage, and dignity so much!
    Sending hugs your way and as our friend Roger used to say "sending up sparks for you."

    -Pat
  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    Oh, dear Lisa, I so wish
    Oh, dear Lisa, I so wish that I could give you a comforting hug in person... Please know that you are in my thoughts and prayers.

    All my best,
    Cynthia
  • Annabelle41415
    Annabelle41415 Member Posts: 6,729 Member
    Doctor
    What has your doctor said about the shooting pains and it sticking out? Has the possibility of a hernia been ruled out as they can be very painful too. I'm so sorry that your test is higher. You have done so much to find help from all angles. Your strength is admired greatly.

    Hugs! Kim
  • lauragb
    lauragb Member Posts: 370 Member
    Sorry for your disappointing
    Sorry for your disappointing news. I know you have been working so hard.
    Know that I am sending light and prayers your way.

    Laura
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    lauragb said:

    Sorry for your disappointing
    Sorry for your disappointing news. I know you have been working so hard.
    Know that I am sending light and prayers your way.

    Laura

    Oh, Lisa, was soo hoping
    Oh, Lisa, was soo hoping that this formula would work for you. Hugs....
  • cowman
    cowman Member Posts: 61
    And More
    Saying big prayers for you, Lisa. I know you believe in the One who will carry you through this. Hope you can feel everyone's care and concern and respect for you.
  • geotina
    geotina Member Posts: 2,111 Member
    Dear Lisa:
    My heart is so heavy thinking of all you are going thru right now. I'm so sorry your news is not better. I know you plate is so very full right now so please know that you are cherished, loved, admired and cared for by so many members of his board.

    Love to you my friend - Tina
  • lesvanb
    lesvanb Member Posts: 905
    My heart is with you, Lisa
    ((hugs))

    I hope you get some relief!

    Leslie
  • lisa42
    lisa42 Member Posts: 3,625 Member
    talked to my onc
    I called my oncologist's office to see if I could get in to see him asap, but was told by his nurse that he was going to be out of the office the rest of the week so she would have him call me sometime towards the end of the day. He called me 5:00 and we spoke for about twenty minutes. We discussed the possibility of again trying Folfox- pros and cons, etc. He said that he honestly does not think it's a good idea- that if I could even get through the first treatment with desensitization (I've been allergic to it and desensitization worked in the past when I was on it in 2007 until my 10th treatment where, even with the desensitization and 6 hour infusion, I had another reaction and was then told "no more"), he would not think it a good idea. He said that we likely would have to stop treatment due to side effects, my difficulty with breathing/oxygen levels lately, or I could end up in the hospital with an allergic reaction or in the hospital with another infection, pneumonia again, or something like that. Instead of giving me more time, it could actually give me less. He said we could do just Xeloda or just 5FU, but I told him that since I've had pretty bad side effects with those in the past (esp. Xeloda), I didn't want to deal with chemo side effects unless I was taking a chemo that at least had a chance of packing the cancer a whallup. I asked about regorafenib and any other drug that may on the FDA fasttrack. He said that they are not yet available unless through clinical trials & he doesn't know of any on this coast. Again, however, he thought they could do me more harm than good. He did also say, however, that he doesn't want to jump to any major conclusion based on this one CEA number. He knows CEA has always been accurate for me, but still did say that sometimes it can be affected by infection and other things.

    I have to decide if I'm going to continue on the natural extract I've been on since Dec.2nd or not. I run out of what I have on hand on Jan 28th, so I'd have to pay for and put my reorder in by this coming Monday in order to get it on time. I don't know if it really isn't working at all, or if it is just taking longer. $2500 is a lot of money to spend if it's not working at all. I've written an email to the doctor in the UK where I'm getting it from, haven't gotten his reply yet as it was 1:30 here when I wrote it and they are 8 hours in time ahead, so it was way after hours for him at that time.

    My naturopathic dr. is in New Zealand until early March and there are two other doctors there I could consult with, but I don't know that I will bother. I've been on so many different types of supplements from there over the last year. Other than help me have some energy (with could be worth a lot), I don't think any of it has really helped my cancer at all. Heck, I strayed from the vegan diet today- went to Subway and got myself a nice turkey sub. Might as well enjoy tasty food if changing my diet hasn't helped me. Not that I'm going to totally abandon it, but maybe indulge myself with things I enjoy to eat a bit more often.

    I may still do some research and look into some clinical trials. Even if I don't find anything that I could do, I'd feel more satisfied knowing I tried and- who knows- I just may find something else.

    Thanks for your support, everyone!
    Lisa
  • baldwin
    baldwin Member Posts: 25
    geotina said:

    Dear Lisa:
    My heart is so heavy thinking of all you are going thru right now. I'm so sorry your news is not better. I know you plate is so very full right now so please know that you are cherished, loved, admired and cared for by so many members of his board.

    Love to you my friend - Tina

    You don't know me
    Dear Lisa,

    I have followed you as well as many, many members on this board for a couple of years. I do not post very often, but I follow most every day. You are one of the members that my husband, who is a stage 4 colon cancer survivor with mets to his lungs, liver, brain, spine and bones, that I follow closely. You remind me of our fight, never give up! We have also engaged a naturopath, been to an alternative cancer clinic, modified the diet, taken non "FDA approved drugs", and are still fighting the fight of our lives. You have been and will continue to be an inspiration to me. I, too, fear the day when the oncologist says, there is nothing more that we can do. I do not know if this applies, but our oncologist at Mass General Hospital said to us several months ago that if my husband's treatment stopped working, that he may be eligible for a trial that was running for stage 4 colon cancer patients that have exhausted all of the "chemotherapy treatments" based on a particular gene, no, not the KRAS one for Erbutix. The non-approved FDA drug that my husband also takes is Anvirzel. MD Anderson did a Phase I trial on this and Sloan Kettering has information on their website regarding this, although, they say it is non conclusive. Of course it is, the pharmaceutical companies cannot make enough money off of it to fund the remaining clinical trials to get it approved. In any case, my prayers are with you and and I am your cheerleader in the background. You are going to find a way to overcome this obstacle. I feel it in my heart.
  • lisa42
    lisa42 Member Posts: 3,625 Member
    talked to my onc
    Oops- double post