Need a little advice/encouragement please

rrob
rrob Member Posts: 158
edited March 2014 in Colorectal Cancer #1
Recap: Dx 10/07 Stage IV. 3 surgeries & 6 mos. of FOLFOX w/ Avastin. 15 mos. of NED. My PET scan in July showed a 4mm node in my lung that did not light up and was too small to biopsy. Followed up with CT scan in Sept. 4mm node the same but several small spots in both lungs too little to even measure. So my oncologist said we could watch and wait or start chemo. I decided to do the chemo--better safe than sorry. I'm doing 6 rounds of 5FU, Leucovorin weekly with Avastin added every two weeks. This is supposed to be manageable w/minimal side effects but with the chance of getting rid of this. At the end of the 6 weeks, we'll rescan but even with good results he wants to do another 2 series of treatments for a total of 18. Here's my problem. I've done 3 treatments and this past week has been crappy. I did my treatment last Friday, was sick all weekend, went to work on Monday, feeling generally bad. Nausea, stomach cramps, fatigue. Then Tuesday night, I would wake up because the cramps were so severe. Wednesday okay, but still pretty yucky. Last night on the drive home, I started throwing up and then had a lovely night of extreme diarrhea which the Lomotil finally got under control this morning. Then I proceeded to throw up before I left for treatment.

I got to my oncologist's office and my blood counts were fine, but they gave me the option to wait a week for treatment. They said it would not compromise my treatment. So I skipped my treatment and headed home.

Has anyone else done this treatment and was it succcessful? Has anyone found a good way to manage these side effects and still work? Not working is not an option. On top of everything else, I'm extremely depressed. I cry at the drop of a hat. I've asked my oncologist for a prognosis if I decide to stop. He said since we're being proactive with treatment and we're not even sure this is a recurrance, he can't give me a prognosis till I've completed the first six treatments and been rescanned.

I feel like a total whiner and I don't understand why I'm having such a hard time fighting this time. Please give me advice, criticism, a kick in the pants, anything to help me deal. This is just not me and I'm struggling to keep going. I know I have a lot to be thankful for, but right now I'm trying to pull myself out of the hole I'm in emotionally. Feeling so yucky is making it worse. Sorry for the total whinefest.

Rebecca

Comments

  • Shayenne
    Shayenne Member Posts: 2,342
    I am...
    on Folfiri with Avastin, which has the Ironetecan, leukovorin, 5fu, but they took the leukovorin out months ago since it was causing me mouth sores, and they may leave me on just Avasting and 5fu starting in December, but the chemo did shrink my liver tumors, not enough though to be operable or anything, but at least they are stabilizing, I started in Feb, have done 12 treatments, and skipping chemo next week, so I don't feel like crap for my kids for Halloween.

    I feel very tired the day after I get unhooked for a few days, but then pretty much bounce back to my normal self. It does take alot of you (chemo) but I don't let it take me over, I really try and push myself to get out, and just do something, when I feel bad, I try and think of something else, like my kids.

    Are you on any kind of anti-nausea meds, or anti-depressants? you may want to try the anti-depressants, they kind of not make me as weepy as I was, and have helped me to stop dwelling toooo long on the bad, I do get in my moods, but I will snap out of it, usually when I'm alone, and it's ok to feel like that, you just don't want to "Stay there", think of something that makes you happy, and know that there are people in the world who are suffering much worse then us, starving children, tortured people, I thank God everyday for each day I have, and YOU ARE NOT WHINING!!!! it's ok to vent and get it out of your system!! you can't be happy ALL the time, so of course you're going to want to vent, and that's what we're here for!

    No one but God knows when we're going, I don't care what doctors prognosis's are, they just don't know, because people have been living with this for years, treatments have come so far, if something isn't working, they try something else.

    I know I am not helping much, but we're here for you anytime you want to vent. I'm sorry you feel so bad :( but hopefully your day gets better. I know, I been where you are and sometimes still feel like you as well, but I can't and won't stay there, make sure you don't let this disease get the best of you!

    Hugsss!
    ~Donna
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    Shayenne said:

    I am...
    on Folfiri with Avastin, which has the Ironetecan, leukovorin, 5fu, but they took the leukovorin out months ago since it was causing me mouth sores, and they may leave me on just Avasting and 5fu starting in December, but the chemo did shrink my liver tumors, not enough though to be operable or anything, but at least they are stabilizing, I started in Feb, have done 12 treatments, and skipping chemo next week, so I don't feel like crap for my kids for Halloween.

    I feel very tired the day after I get unhooked for a few days, but then pretty much bounce back to my normal self. It does take alot of you (chemo) but I don't let it take me over, I really try and push myself to get out, and just do something, when I feel bad, I try and think of something else, like my kids.

    Are you on any kind of anti-nausea meds, or anti-depressants? you may want to try the anti-depressants, they kind of not make me as weepy as I was, and have helped me to stop dwelling toooo long on the bad, I do get in my moods, but I will snap out of it, usually when I'm alone, and it's ok to feel like that, you just don't want to "Stay there", think of something that makes you happy, and know that there are people in the world who are suffering much worse then us, starving children, tortured people, I thank God everyday for each day I have, and YOU ARE NOT WHINING!!!! it's ok to vent and get it out of your system!! you can't be happy ALL the time, so of course you're going to want to vent, and that's what we're here for!

    No one but God knows when we're going, I don't care what doctors prognosis's are, they just don't know, because people have been living with this for years, treatments have come so far, if something isn't working, they try something else.

    I know I am not helping much, but we're here for you anytime you want to vent. I'm sorry you feel so bad :( but hopefully your day gets better. I know, I been where you are and sometimes still feel like you as well, but I can't and won't stay there, make sure you don't let this disease get the best of you!

    Hugsss!
    ~Donna

    Leucovorin:
    Leucovorin is a low dose of folic acid.


    Important things to remember about the side effects of Leucovorin:

    * The side effects with treatment of Leucovorin are likely attributable to other chemotherapy medications being given in combination with Leucovorin.
    * When given in combination with fluorouracil (5-FU) the side effects of fluorouracil may be more severe. (see fluorocuracil).


    The following are possible side effects of Leucovorin:

    * Allergic reaction: rash, itching, facial flushing. Rarely severe.
    * Nausea and vomiting (rare)

    How Leucovorin Works:

    Leucovorin is a compound similar to folic acid, which is a necessary vitamin. It has been around and in use for many decades. Leucovorin is a medication frequently used in combination with the chemotherapy drugs fluoruracil and methotrexate. Leucovorin is not a chemotherapy drug itself, however it is used in addition to these chemotherapy drugs to enhance anti cancer effects (with fluorouracil)).

    Fluorouracil when given alone stays in the body for only a short time. When given in combination with Leucovorin, Leucovorin can enhance the binding of fluorouracil to an enzyme inside of the cancer cells. As a result fluorouracil may stay in the cancer cell longer and exert its anti cancer effect on the cells. Leucovorin has almost no side effects of its own but when used in combination with fluorouracil it can increase the severity of side effects of that drug.


    More Info HERE
  • luv3jay
    luv3jay Member Posts: 533 Member
    you are not alone
    I HATE CHEMO! It is possibly the worse...no not possibly...it IS the worst thing that I have ever felt in my entire life! I had to skip this week too! I just couldn't do it. I was also told in the beginning that the spots shown in the lungs from the CT scan were too small and no uptake on the PET. So we waited...turned into full fledge tumors that had to be resected this past august. The one in my other lung were too numerous to deal with. So I'm back on chemo hoping to rid my lungs of those! Anyway, I hope this won't be your story. Good luck and get some rest.

    -Sheri
  • johnsfo
    johnsfo Member Posts: 47

    Leucovorin:
    Leucovorin is a low dose of folic acid.


    Important things to remember about the side effects of Leucovorin:

    * The side effects with treatment of Leucovorin are likely attributable to other chemotherapy medications being given in combination with Leucovorin.
    * When given in combination with fluorouracil (5-FU) the side effects of fluorouracil may be more severe. (see fluorocuracil).


    The following are possible side effects of Leucovorin:

    * Allergic reaction: rash, itching, facial flushing. Rarely severe.
    * Nausea and vomiting (rare)

    How Leucovorin Works:

    Leucovorin is a compound similar to folic acid, which is a necessary vitamin. It has been around and in use for many decades. Leucovorin is a medication frequently used in combination with the chemotherapy drugs fluoruracil and methotrexate. Leucovorin is not a chemotherapy drug itself, however it is used in addition to these chemotherapy drugs to enhance anti cancer effects (with fluorouracil)).

    Fluorouracil when given alone stays in the body for only a short time. When given in combination with Leucovorin, Leucovorin can enhance the binding of fluorouracil to an enzyme inside of the cancer cells. As a result fluorouracil may stay in the cancer cell longer and exert its anti cancer effect on the cells. Leucovorin has almost no side effects of its own but when used in combination with fluorouracil it can increase the severity of side effects of that drug.


    More Info HERE

    side effects and depression
    Dear Rebecca,

    Like you, I was first diagnosed in October 2007. My cancer was stage 3 then, and I've had recurrences at the sacrum and the anastomosis since. I'm hearing what a hard time you're having and trying to think of what I could offer that might help. This has turned into a long reply; I hope there is something here that is useful for you.

    What seems most immediately distessing is the cramping, vomiting, and diarrhea. Are you having the 5FU infused or do you take Xeloda? Xeloda can cause all of the digestive distress you describe, and several people I know who have stopped taking Xeloda have felt much better and have been able to continue with their other chemo meds. I don't know whether infused 5FU has similar side effects, but it's worth asking your oncologist.

    The best advice I recieved about "complaining." After I sent an email to a friend of mine, on a bad day and much like yours, I apologized for complaining. She wrote back: "Don't ever apologize to another person with cancer for experessing however you're feeling about your cancer!" We all know those feelings well, and acknowledging them is an act of strength, not weakness. Having advanced cancer and the treatments and side effects that go along with it is awful. The only way I know of to get through those feelings and to start feeling good again is to talk about them -- openly, honestly, and with vigor -- with people I love and trust. We're all here for you.

    Two of the most helpful things I have heard about having cancer came from my surgeon right after my surgery and diagnosis. I asked whether I would need to take a medical leave from work and she replied:

    1. "Having cancer is a full-time job."
    2. "Do whatever is most wholesome for you."

    Those are exact quotations, I think. I have tried to follow her advice ever since. At first, I wanted to keep my life as normal as possible, so it was important for me to continue working. That was good for me then. As my health declined, at first from side effects of chemo, then from radiation, and finally from the progression of the disease, I decided that I couldn't perform my job adequately and that I would be most able to live each day well if I went on leave. That is good for me now. It was a hard transition to make.

    You say that not working is not an option. You may have no other option for income right now or you may have other reasons for seeing no other options, but I am pretty sure that with stage 4 cancer you are eligible for Social Security disability payments. They can take up to 6 months to process, but I think they can be expedited in some circumstances. My knowledge on the topic isn't good -- can anyone else on the board offer specific info about SSDI? I know the drive to keep working -- I did it for too long -- and I know that I am in better health and in a good frame of mind since I have gone on leave. There are other resources to help cancer patients, and some legal protections. Again, I don't know your situation and don't want to pry, but please be sure to check out all the options for income and health coverage that are available. I have some information -- feel free to send a private email if you'd like.

    When I was first diagnosed, I tried to "fight" the disease. That's the prevalent metaphor, we see it everywhere, and I thought I wasn't doing all I could do if I didn't "fight." Trouble was I couldn't imagine what that looked like. (For some reason, my imagination went to Wile E. Coyotee and Roadrunner -- I could never figure out which was me and which the cancer, but at least I had that slapstick to keep me entertained.) Instead of fighting the disease, I learned to focus on what I enjoyed, and when I felt (feel) really crappy, I just sent my imagination to that -- climbing mountains, working in my garden, teaching my classes, and so forth. Very concrete images in which I pictured myself active, able, and enjoying myself. That works better for me than imagining that I'm fighting the disease because it keeps my attention focused on what I want, not on what I don't want.

    From early on, I have also developed a one sentence "philosophy" that guides my experience of cancer: I cannot change the diagnosis; I can control how I experience the disease. I have some specific techniques that work for me along those lines, so again, feel free to send a private email if you'd like.

    My best wishes to you.

    John