Question for stage 4 patients in remission

rthornton
rthornton Member Posts: 346 Member
edited March 2014 in Colorectal Cancer #1
OK, so I returned to Atlanta last night after taking a trip to celebrate one year of life after my stage four diagnosis last May. The trip was great, because for three weeks I did not really worry myself with all these financial and health problems ... didn't forget about them, of course, but also did not worry about them. Now I am back and my father has already asked when I see my oncologist again. I'm supposed to make an appointment with my doctor as soon as possible. After having been diagnosed stage four last May at age 35, I did three months of chemotherapy and a PET scan in Sept. was negative, and then another PET scan in November, and then another scan in March ... all of them were negative. I am due for another PET scan pretty soon. Even with negative PET scans my doctor kept me in treatment with an Avastin/Erbitux combo until the end of April (I took a "chemo break" to go on this trip). I HATED the Erbitux rash, and still have it after two months off of that nasty drug. I do NOT want to start using it again and am even getting rather depressed by the very idea, and I am curious if other stage four patients continued treatment even if they went into remission. My doctor is known for treating aggressively, and I wonder if he treats unnecessarily aggressively. For those stage four patients in remission, are you still receiving treatment or not? I am thinking that my Erbitux days are over, and maybe I can try another drug or no drugs at all. So I am curious what others have done in terms of treatment after/during remission.

Thanks!

Rodney

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #2
    My husband was dx in june 05 with stage 4. He completed most of the treatments in the six rounds. Last treatments were so hard on his body, doc reduced the last two rounds to half the original planned amount. Husband had PET at beginning of chemo, again in November (liver tumors shrinking) in March (NED) and has one scheduled for June 21. With PET showing NED doc said that hubby could get off chemo for a while. Hubby asked that port be removed but doc would not agree yet. Said to ask again in June. We wait to see what scans show this month. Hubby has been off chemo since Feb. and seems to be doing fine.
  • lfondots63
    lfondots63 Member Posts: 818 Member
    #3
    Hi Rodney,

    I can't help with the question but did you ask the doctor if you could stop chemo? My belief is it is up to you. If your CEA is good and all PET scans NED why keep abusing your body with chemo. If you stop chemo try doing a cancer diet like you said you were trying. You could also try other alternative natural treatments like juicing and supplements? Or the alkaline diet. All these are easier on your body and it sounds like it is still trying to get over your other treatments. Good Luck and tell us what you decide.

    Lisa
  • jerseysue
    jerseysue Member Posts: 624 Member
    #4
    Rodney I'm stage IV dx last April. I only had 6 months of chemo and that's it. I do not take any other chemo. My cancer met to my ovaries and uterus. I would ask your onc if you can stop or why he thinks you should continue.
  • cal79
    cal79 Member Posts: 57
    #5
    Hi Rodney,

    I am not stage IV so I can't comment on your chemo regime. However, I agree that you should talk to your doc about your concerns. My surgeon is extremely aggressive in my follow-up care, but only because I want him to be. Perhaps your doc just thinks that the aggressive treatment is what you want and that is why he/she is continuing. Or, if they have a good reason for keeping you on this treatment it may sway your opinion?

    Good luck.

    Cal :)
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #6
    Hi Rodney -

    You know my opinion and also my oncologist's opinion. She thinks the combination of Avastin and Erbitux alone is somewhat odd and not in general the way to go.

    When I first stopped chemo (last cycle started on 11/28/05), my onc had decided to put me on a break (after the standard 6 cycles) almost regardless of what my December scans showed. But, when my December and February scans came back NED, she was no longer calling it a break and rather saying we were in wait and see mode. Since she managed to get me referred anyway for studies at NIH and I again had negative scans (and every other conceivable test) there in both March and April, the plan now is to scan every 2 months for a while (I have my next scan on 6/30) and gradually push out the scan interval a little bit if I continue to do well.

    I think you should seriously talk with your doctor about why he feels the need to continue – especially with the Erbitux since you have had such an unpleasant reaction to it.

    Good luck. Glad you are back (even if you are not!)

    Take care,
    Betsy
  • scouty
    scouty Member Posts: 1,965 Member
    #7
    Rodney,

    You know my story, I stopped before I was in remission because my body told me to and my God supported the decision (the decision was still very difficult).

    Lisa P.
  • jana11
    jana11 Member Posts: 705
    #8
    Hi there! Welcome home, sorry it comes with all these hard decisions.

    Don't know what to tell you. I had my first lung met resected and then 4 months of chemo... then off until more mets appeared - and ALL my treatment has been very aggressive.

    Have a talk with your onc. Tell them you are not tolerating the drug and need to consider different options. IT IS YOUR BODY.

    Good luck. jana
  • pink05
    pink05 Member Posts: 550
    #9
    Hi Rodney,

    I think you should definitely talk to your onc about this. I have wondered the same thing about stage IVs. I would think that if you're in remission, you wouldn't need to be on chemo. It also sounds like you have been doing chemo for a long time now. I think the body needs a break from chemo to regain it's strength. I agree with some of the others. It sounds like you are taking the naturopathic route as well as your chemo. Maybe you can go off of chemo and put all of your time and energy into more alternative methods. Also, why do you have to be on erbitux if you are already taking avastin? I don't quite understand that combo. Maybe your onc thinks that you have been doing so well on this regimen and doesn't want to mess with it. It sounds possibly too aggressive, but that's just my opinion. It's between you and your doctor to decide what is best for you. Let us know what you decide.

    God bless,

    -Lee-
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    #10
    Hi Rodney,
    As you know, I was Stage IV too and after my last surgery I did not have chemo, as technically at that point I was NED. It has now been a year and 7 months since I had surgery and it has been almost 3 years since I did any chemo. I would not continue if I were you. You are NED and like others said your body needs a break from that s___. I would put my focus into supplements, nutrition, exercise, and mind/body medicine. Of course, continue getting checked, but I also have to ask, why PET scans and not just CT scans since you're NED as well.
    Good luck to you whatever you decide,
    Susan.
  • crazylady
    crazylady Member Posts: 543 Member
    #11
    Hi Rodney.
    I had mets to my lung show up last October making me stage 4. I finished six months of Folfox about 6 weeks ago. My scans showed no cancer after 4 months. I finished the last 2 months and still had clear scans. According to my doctor whether or not to come off chemo when you are clear is a philosophy. He believes that if you continue chemo and have a cancer break through you can never use that chemo again. If you come off chemo when you are clear that chemo can be used again. It also gives your body a break and the chance to get stronger so if the cancer does return you will be ready for the fight. It makes sense to me so I'm off chemo and hoping the side effects will clear up quickly.
    Jamie
  • KathiM
    KathiM Member Posts: 8,028 Member
    #12
    Hey, Rodney:
    I was only a stage III, finished 2 rounds of chemo...surgery...never any more chemo...
    BUT on the bc, I came back from my trip to Holland and said "THAT'S ENOUGH" to my onc...so I know your feelings...I was feeling MUCH better, and didn't want to go back to that hell.
    With the bc, I skipped the last of the first four at that point, tried the first of the last four, only with the assurance from my onc that we would stop that, too, if it got rough....
    I agree with others here...if you are NED, (although I would request a CT scan...shows physical, not just uptaking stuff) it would be hard to justify continuing on something you are having such a bad reaction too...
    Remember, the second opinion (I went to 5 second opinions...didn't WANT chemo AGAIN...hehehehe)
    Hugs, kathi
  • rthornton
    rthornton Member Posts: 346 Member
    #13
    KathiM said:

    Hey, Rodney:
    I was only a stage III, finished 2 rounds of chemo...surgery...never any more chemo...
    BUT on the bc, I came back from my trip to Holland and said "THAT'S ENOUGH" to my onc...so I know your feelings...I was feeling MUCH better, and didn't want to go back to that hell.
    With the bc, I skipped the last of the first four at that point, tried the first of the last four, only with the assurance from my onc that we would stop that, too, if it got rough....
    I agree with others here...if you are NED, (although I would request a CT scan...shows physical, not just uptaking stuff) it would be hard to justify continuing on something you are having such a bad reaction too...
    Remember, the second opinion (I went to 5 second opinions...didn't WANT chemo AGAIN...hehehehe)
    Hugs, kathi

    Thank you all for your replies. It's certainly interesting to read about what everyone else is doing. Of course treatements decisions are ultimately up to the patient, but it's a precarious position because we do not want to compromise our treatment by opting against the use of a medicine that may prevent a recurrence, and at the same time do not want to burden our bodies with drugs that may be harmful in other ways. Also, I often amaze myself by the authority I will concede to the medical professionals when it comes to treatment. Anyway, I will meet with my doctor soon - maybe next week - and discuss these concerns with him. I don't know his exact motivations for keeping me in treatment. I lost my private health insurance just after my initial surgery, and I get my chemotherapy from a community hospital, so he's not really making any $$ from my continued treatment. I think he just likes to treat cancer very aggressively ... but maybe too aggressively. Anyway, thanks for all the replies.

    Rodney
  • nanuk
    nanuk Member Posts: 1,358 Member
    #14
    I am stage IV crc-mets to lungs (many) and not in remission; I have been on a self imposed "vacation" from Erbitux/Avastin alone for 3 months. My CEA went down from 21 to 3.3, but recent restaging indicates that the tumors have doubled in size. I also had the rash, which took 3 months to dissapear..
    I just completed a 10 day lifestyle program, which included detoxing, fasting, and juicing. I'm not doing anything in the way of treatment other than continuing the vegan-juicing diet & supplements. Really not sure I want to go back on Avastin/Erbitux, and have tried about everything else..everything seemed to slow the tumors, but nothing got rid of them. Really dunno what else to do, so I'm putting off seeing my onc until I make some kind of a decision. Bud

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