Advice

dorookie
dorookie Member Posts: 1,731 Member
edited March 2014 in Colorectal Cancer #1
Hi everyone, (history, stage 3 with spread to 6 out of 15 nodes, age 38, had surgery jun 07, IV chemo since July 07, now on radiation Oct 07 for 28 treatments plus taking Xeloda, then will have 5 more treatments of IV CHemo)

I know most would say that overkill is just what it is and if it saves your life then so be it. I have been aweful sick, blacked out while driving and totalled my SUV, thank God no one was hurt though. I am just wondering if 7 out of 12 IV CHemo, 28 treatments of radiation isnt enough. My last pet scan was clean from what the ONC told me. I just dont understand why he is hitting me so hard with the drugs. Even my radiation doc is amazed at the high dosage I am taking. I guess I am just feeling down and want this to be over. I am so tired of being tired, sick of being sick and I want so much to be able to complete a promise I make to my daughter when I say I am going to take her somewhere, but end up not going because I am to sick. I hate disappointing her. Guess I am just whinning, I want this over with so badly...as I am sure everyone else does too.

Comments

  • Limey
    Limey Member Posts: 446 Member
    #2
    I am sorry you are struggling, I am not sure what fegime of chemo your on but many have struggled with finishing a full six months. I ewas on Folfox and only finished 9 of the 12.

    First and foremost know that this too shall pass. It will get better, and you will feel better. Couple of suggestions. first, you are your strongest advocate for your care. If you question, get a 2nd opinion. I would not hesitate to do that one bit. also, try setting different promises with you daughter just for now. how about staying in bed and watching a movie just you two, or coloring - it is healing for both of you. you can make your plans more extensive in the very near future.

    keeping a positive spirit is huge in your recovery. stay strong
    Mark.
  • kristasplace
    kristasplace Member Posts: 957 Member
    #3
    I am so with you on this. Tired of being tired, sick of being sick...making promises to spend time with loved ones, but never knowing how you're going to feel from moment to moment. Talking to them on the phone when they're having a get together you can't attend, or an outing you would love to participate in, but the thought of doing hurts worse than the doing...the pain of being left out is nearly as bad as the pain of the sickness. Being able to relate to what you're going through gives me comfort because i know this is all temporary, and when it's over, they're going to find it impossible to hold me back. That's the one promise i know i can keep, and the one thought that pushes me on to survive this. In the meanwhile, i totally agree with Mark...find and do little things that give you joy. I've started drawing again. Something i haven't done in years. I'm also spending time planning a reward for my recovery. Possibly a trip to my favorite place in the world, Disneyland. I'm so much looking forward to feeling good again.

    Please keep us posted on how you're doing.

    Many hugs,
    Krista
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    #4
    Hi Rookie,
    I would not say that you should do as many drugs as humanly possible just in the event you might have a recurrence! What would happen if you survived cancer only to get killed crashing your car! You are NED right now correct? I would suggest that you speak up to your oncologist and tell him how you feel. There is something called quality of life! Also, like Mark said, get a second opinion, preferrably at a major cancer center such as (I don't know where you are located) MD Anderson or Mayo, Cancer Centers of America, or any of the others. After being treated here locally I went down to MD Anderson. After that my oncologist here deferred to the decisions that they made concerning my treatment. I don't know the normal routine for rectal cancer, my tumor was the in Sigmoid colon, so I don't know what would or wouldn't be considered overkill, but if you feel like it is, then say something! By all means, it is your body and your decision. After my last surgery (for 2 lung mets) I did not have any more chemo. I don't think that my doctor here would have suggested that in a million years, but thanks to my doc down there in Texas I chose not to have any more chemo and I am very glad about that decision. So, see what another doc says.
    Take care,
    Susan
  • rmap59
    rmap59 Member Posts: 266
    #5
    Hi,
    I would definitely have a serious talk with my onc and if I didnt like what he said I would go for a second opinion. I to had stage 3 rectal, no positive lymphs, no mets. I had surgery, 28 weeks of rads/xelodo and one month off. Then 12 weeks of xelodo and oxaliplatin(will turn out to be 4 IV treatment and 4 rounds of xeloda). My onc always encourages questions about my treatment, yours should too. Oh and you are not whining, I have been very sick too and done my share of whining but its okay.

    Stay in touch, Robin
  • livefreeordie
    livefreeordie Member Posts: 45
    #6
    You're lucky that you could get surgery, radiation, AND chemo.
    I cant operate on mine because its too big. So
    I am stuck with only chemo thats not shrinking it yet.
    I think the more options you have the better to
    get rid of those **** cells...

    Sucks being sick, but it will pass...

    Cancer sucks!!!
  • hopefulone
    hopefulone Member Posts: 1,043 Member
    #7
    Hi and your not whining. It's tough, especially the regimen that you are on. Talk to your onc again. Blacking out while your driving is serious and it may be time to get another opinion. A "side effect" such as this can be more detrimental than the disease itself. Another opinion would most certainly be in order. God Bless ,

    Diane
  • mykidsmommy
    mykidsmommy Member Posts: 76
    #8
    Hi - I think chemo messed with your brain more than your body - I had SUCH a hard time mentally with it - I always wanted to quit - after every treatment I would say "this is my last one" and I told my family I was going to quit before the 1 one - well, that was silly. I am done - and I am proud ofmyself that I can tell my daughter ,who is 8, that I did whatever I could do make sure I got the cancer - You would want your daughter to do 199 treatments if it could save her life right?
    Here's the deal: No one ever died from chemo - but cancer...yes.
    THIS WILL PASS and you will be so proud that you did it!!!!

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