Cancer Iliterate?

marym29 Member Posts: 71 Member
edited March 2014 in Colorectal Cancer #1
Hello Family,
It's Mary from WI; and I've taken a little break from the site here for a bit. I truely hope you all are safe and well. I say a prayer for you all everynight and always! ;)

In a nutshell, my first visit with my mom to the Chemo Clinic I balled all the way there, during, and back. Her husband and one of the nurses came by my side and I babbled on and on to her how I've been reading and talking to all kinds of people about all of this - on the internet for hours and hours day and night cry, cry, cry...she told me I should take a little break from it all; and so I did.

Now, I'm back with (probably some really stupid questions) so here goes nothing:
(I've also faxed all of these ?'s to my mom's oncon.)
- does a CEA reading have to do with blood counts?
- what does NED mean?
- according to the paperwork from my mom's oncon. these are the drugs she is getting:
vancocin, levaquin, flagyl, lovenox, heparin, and I know she's also getting the 5-FU Pump.
- which ones are the chemo drugs?
- how many treatments will my mom get before they do follow-up CT, PET, MRI scans on the tumors in her liver and lungs?
- after her treatments the next couple of days after she's SO fatigued; is this common?
- her oncon. says she's doing a "clinical trial" right now (a good candidate for it); how do/will we know if it's working or not?
- also, my mom is going to start seeing a psychiatrist -is on meds for anxiety; is this common as well?

Again everyone... after all is said and done; I will probably be known as "Crazy Mary from WI". And I guess I shouldn't feel "stupid" for asking any questions of any sort. Luckily, I adore my mom's entire team of doctors; which have been so wonderful and accomodating from day one!

OKAY, I am offically off of my soap box now! Good night family, sweet dreams, and you will hear my voice in prayer tonite and always.

Much Love,
Mary from WI


  • rthornton
    rthornton Member Posts: 346 Member
    Hi Mary. It's perfectly fine for you to ask questions. It only means that you care about your mother and all of this cancer treatment stuff is new to you. This is a good place to ask such questions. I'll attempt some answers and I'm sure that others will, too.

    CEA refers to a chemical called carcinoembroynic antigen (or something like that) which is a chemical secreted by cancerous tumors. Generally the more cancerous activity in a body, the higher the CEA count (it is called a tumor marker), but CEA levels can be mysterious and unpredictable, and by themselves are not reliable dianostic tools.

    NED = No Evidence of Disease, like when you have a CT/PET scan after surgery and/or chemo and there are no more tumors. It's like the gold medal of treatment.

    5FU is a chemotherapy drug, but I'm not sure about the others. When in treatment, I got 5FU, Avastin, Oxaliplatin, and Erbitux (and then other drugs to manage side effects, etc).

    It is up to the oncologist when to do followup scans, but my doctor did my fist scans three months into treatment, which was after six chemo cycles.

    After my 5FU infusions last year I was SOOOOO tired! Some days I did not want to get out of bed. But after I stopped 5FU my energy level really improved. The body definitely needs rest during chemotherapy.

    I was not in a clinical trial, so I cannot speak for them.

    I did not see a therapist, but my doctor did prescribe an antidepressant (which I inevitably did not use). I found a lot of support from this board, actually.

    I'm sure that someone will answer your questions that I could not answer. Let us know if you have other questions.

    Best wishes to you and your mother!

  • taraHK
    taraHK Member Posts: 1,952 Member
    Hi Mary,
    All your questions seem very sensible to me. I agree with everthing Rodney has said (as usual!). Just a couple of extra points:

    Fatigue: yes! that is normal

    Clinical Trial: I was not in a clinical trial myself but my understanding is that there are a number of advantages to being in a clinical trial, one of which is that you often get more vigilant (frequent) monitoring than you would even normally

    Anxiety, etc: It is certainly not uncommon to have anxiety during all of this. At various points, I saw a therapist, and also took some anti-anxiety medication. My dear husband (caregiver), who doesn't even like to take an aspirin, even took something for a little while so he could sleep. I'm not wishing to 'push' medication or therapy, but I also think one needs to be open to them.

    I am so glad you are feeling so positive about your mother's medical team. That is so important.

    Best wishes,

    - also, my mom is going to start seeing a psychiatrist -is on meds for anxiety; is this common as well?
  • pink05
    pink05 Member Posts: 550
    Hi Mary,

    I'm pretty new to this site. My dad has stage IV colon cancer and finished his 3rd treatment last week. As far as all the drugs you mentioned, the only two I am familiar with is the 5-fu (which is a chemo drug) and flagyl. I think flagyl is an antibiotic. My dad had to take it shortly after his surgery due to an intestinal infection. I'm not sure about the other drugs. My dad wears a pump containing 5-fu for a 48 hour period. He has done okay with it so far, but I think he does get a little tired with it. My dad will be getting his next CAT scan in about another month (about 3 months after beginning his chemo). I'm glad you have faith in your mom's team of docs. That is very important. I will keep you and your mother in my prayers.

    God Bless,

  • spok5
    spok5 Member Posts: 18
    Hi Mary- Lovenox and heparin are blood thinners. I had a clot after surgery and they gave me the 2 drugs as stomach shots. Not as yucky as it sounds- they only go into the top layer of skin and don't really hurt, but do bruise. Good Luck
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    spok5 said:

    Hi Mary- Lovenox and heparin are blood thinners. I had a clot after surgery and they gave me the 2 drugs as stomach shots. Not as yucky as it sounds- they only go into the top layer of skin and don't really hurt, but do bruise. Good Luck

    Hi Mary...try these links for drug explanations;

    for levaquin

    for flagyl

    Nothing stupid about asking questions Mary.If no-one asked questions we would have to resort to too much humour and with the way my humour comes across that could depress anyone!Our best to your mum and keep believing Mary....with a wonderfull caring daughter like you by her side I am sure she feels a wealth of support.
    Ross and Jen
  • KathiM
    KathiM Member Posts: 8,028 Member
    Mary! Welcome back, my dear.
    Read my gallery contribution about a nutshell, you guys have REAL wings!!!! This disease should be treated as treating the patient WITH the disease, not the disease IN the patient. LOTS of mind-benders are SOP (saddness, anxiety, fear,etc). I was VERY lucky that I didn't end up needing much pharmacological (drugs) help, my biggest emotion was ANGER at this beast! But I am a lemonade person (as you can tell if you read some of my posts) and THAT can be irritating as well!!!

    I was a caregiver to my mom, first, she had uterine and the breast cancer. All I can say is, love your mom (which you already DO, obviously) and be there for doctor's appts, etc...cancer seems to rob us of our ability to hear EVERYTHING that is being the word 'INVASIVE' with my breast cancer...missed it competely.
    This is a great place for venting, sharing, asking questions...look at all the answers you have already gotten here!

    Hugs to YOU and YOUR MOM!!!
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    Hi Mary -

    No question is stupid!

    Vancocin, levaquin and flagyl are all antibiotics - if your Mom is on all these regularly there must be some infection involved.

    As for PET / CT schedule I had it done before the start of chemo, after two cycles, after 6 cycles and then again 2 months later - due for another set next week.

    Good luck to you and your mother.