Dr. says no colonoscopy needed for Stage IV's ????

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  • Bear23
    Bear23 Member Posts: 84
    #22
    LivinginNH said:

    Hi all,
    You're all right,

    Hi all,

    You're all right, we should just take things one at a time and not think about trials, etc., at this point. After the scans next week the doctor wants to put Rick on 5FU + Avastin. But the reason i mentioned the trials is that the onc. stated that if Avastin stopped working the only next step would be trials. So maybe we're getting ahead of ourselves, but we just want a "game plan" up front so that we can kind of prepare, just in case. Rick is always saying that we'll take things, "one day at a time". It's hard sometimes... Anyway, thank you all for your kind postings, it's so wonderful to have such caring folks out here. And Happy New Year everyone! Luv, Cynthia

    Chiming in
    Cynthia,
    Iam a Stage 4 as of last December. I have mets to the lungs. Previously did chemo/rad, surgery and the FOLFOX. I had a few other things go on between ending folfox and getting mets. One of them being a colonoscopy. It was a year after surgery. I was told 3 years for the next one. I said "Wait, I can't be on the three year plan" but that's what's up. Since mets in Dec 09, I went on 5fu and avastin and when that didn't work, I was kras tested and was able to go on Vectibix and Irinotecan. I had good results with that and am just on Vectibix now with a scan in another month. I have scans every 3-6months.

    It's hard not knowing the game plan but cancer is like that and you have to be flexible. See what the scans say next and then plan from there to the next step. You are treating this like a chronic disease. It's hard not being in control.

    I'm not sure why you would only have trials left. Has Rick been kras tested? If not he should be. I, too, went to Dana Farber. I did not like the doctor I met so I stayed in Portland with Mercy Hospital. Have you tried the Maine Med Group? Where were you going before the DF visit?

    Well, good luck to you both.
    Valerie
  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #23
    Bear23 said:

    Chiming in
    Cynthia,
    Iam a Stage 4 as of last December. I have mets to the lungs. Previously did chemo/rad, surgery and the FOLFOX. I had a few other things go on between ending folfox and getting mets. One of them being a colonoscopy. It was a year after surgery. I was told 3 years for the next one. I said "Wait, I can't be on the three year plan" but that's what's up. Since mets in Dec 09, I went on 5fu and avastin and when that didn't work, I was kras tested and was able to go on Vectibix and Irinotecan. I had good results with that and am just on Vectibix now with a scan in another month. I have scans every 3-6months.

    It's hard not knowing the game plan but cancer is like that and you have to be flexible. See what the scans say next and then plan from there to the next step. You are treating this like a chronic disease. It's hard not being in control.

    I'm not sure why you would only have trials left. Has Rick been kras tested? If not he should be. I, too, went to Dana Farber. I did not like the doctor I met so I stayed in Portland with Mercy Hospital. Have you tried the Maine Med Group? Where were you going before the DF visit?

    Well, good luck to you both.
    Valerie

    Hi Valerie,
    The doctor told

    Hi Valerie,

    The doctor told him last week that since he was a Kras mutant, the only drugs available now are 5FU and Avastin. (He'll start the 6 month treatment in a couple of weeks.) So, if those don't work, it appears we're then at the trial level. Our first onc. was at MGH, but we wanted another opinion since she didn't seem aggressive enough with treatment. So, after we opted for HIPEC, we found a new onc. at Dana Farber, but this one is quite young, so I don't feel that comfortable with her experience level, not to mention that her statements to us were a bit confusing. In any case, we're praying for clear scans on Wednesday... Best wishes, Cynthia
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #24
    LivinginNH said:

    Hi Valerie,
    The doctor told

    Hi Valerie,

    The doctor told him last week that since he was a Kras mutant, the only drugs available now are 5FU and Avastin. (He'll start the 6 month treatment in a couple of weeks.) So, if those don't work, it appears we're then at the trial level. Our first onc. was at MGH, but we wanted another opinion since she didn't seem aggressive enough with treatment. So, after we opted for HIPEC, we found a new onc. at Dana Farber, but this one is quite young, so I don't feel that comfortable with her experience level, not to mention that her statements to us were a bit confusing. In any case, we're praying for clear scans on Wednesday... Best wishes, Cynthia

    Cynthia Im afraid I have lost the thread about Rick,s
    situation right now according to last scans you have.Would you clarify it to me ? I would appreciate it.
    Big hugs to both.
  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #25
    pepebcn said:

    Cynthia Im afraid I have lost the thread about Rick,s
    situation right now according to last scans you have.Would you clarify it to me ? I would appreciate it.
    Big hugs to both.

    Hi Pepe, I don't know if

    Hi Pepe, I don't know if anyone has ever told you, but it's really nice how you try to keep track of everyone. I always look forward to your posts, they often make me smile when I'm feeling down. :-) In regard to your question, we'll know if the HIPEC surgery was successful after we have the PET/CT scans on Wednesday. However, because the cancer reached the peritoneal cavity (although there was no visible cancer after surgery), the new doctor says that he'll need to go on 6 months of 5FU with Avastin in any case. :-( And Hugs right back at you! Cynthia
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #26
    2nd opinion
    Cynthia,

    I'm sorry I'm late chiming in on this one, but I see you have received many thoughtful comments. I will say that I agree with those who say get a second opinion. It just sounds like this doctor is not hitting the right note for you and Rick. See what someone else says, and then the two of you can make a more informed opinion.

    *hugs*
    Gail
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #27
    2nd opinion
    Cynthia,

    I'm sorry I'm late chiming in on this one, but I see you have received many thoughtful comments. I will say that I agree with those who say get a second opinion. It just sounds like this doctor is not hitting the right note for you and Rick. See what someone else says, and then the two of you can make a more informed opinion.

    *hugs*
    Gail
  • tgarris3
    tgarris3 Member Posts: 23
    #28
    tootsie1 said:

    2nd opinion
    Cynthia,

    I'm sorry I'm late chiming in on this one, but I see you have received many thoughtful comments. I will say that I agree with those who say get a second opinion. It just sounds like this doctor is not hitting the right note for you and Rick. See what someone else says, and then the two of you can make a more informed opinion.

    *hugs*
    Gail

    Dads Surgeon
    My dads surgeon still does followups every 6 months and does a yrly colonoscopy.. He was dx in June 2009 with Stage IV w/mets to liver... He has been on chemo since July or Aug of last year continuous... He is doing great! Just wanted to say that I may not chime in much, but this place has been a life saver for me.. You all are great!!
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    #29
    LivinginNH said:

    Hi Pepe, I don't know if

    Hi Pepe, I don't know if anyone has ever told you, but it's really nice how you try to keep track of everyone. I always look forward to your posts, they often make me smile when I'm feeling down. :-) In regard to your question, we'll know if the HIPEC surgery was successful after we have the PET/CT scans on Wednesday. However, because the cancer reached the peritoneal cavity (although there was no visible cancer after surgery), the new doctor says that he'll need to go on 6 months of 5FU with Avastin in any case. :-( And Hugs right back at you! Cynthia

    5FU/Avastin
    Hi Cynthia,

    I think I missed the first posts about Rick's situation, so I'm a little intrigued here. When he was first diagnosed, I'm not sure what kind of treatment he had, or was the HIPEC surgery the first treatment? If it was and now the doctor is saying he needs to do the 6 months of 5FU/Avastin, that makes sense to me.... even if there was no visible signs of cancer after the surgery, it is pretty standard to do 6 months of chemo post-surgery, just to make sure that the patient is given every possible chance of catching any stray cancer cells that might be floating around one's system, especially after surgery. So, assumng the PET/CT scans come back clean, then you can sort of look at the 5FU/Avastin as an "insurance policy", so to speak.

    Where I am confused is where the doctor said if the 5FU/Avastin doesn't work, then all you are left with is trials. I'm assuming he means by "not working" is that if the PET/CT scan show cancer anywhere, be them new growths somewhere or growths in the peritoneal cavity and after 6 months of this chemo these growths are larger or there are new growths... then all that has really proved is the 5FU/Avastin chemo didn't work as well as you would like it to. If that's the case, then why can't he try some of the other chemos such as Ertibux (if he is KRAS tested and found that it might be beneficial) or Irinitocan, or a combination of any of these? Why does Rick's doctor think that if this one combo of 5FU/Avastin is the only chemo he can try? Or did I miss something in some of the posts that may have explained this?

    Cheryl
  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #30
    CherylHutch said:

    5FU/Avastin
    Hi Cynthia,

    I think I missed the first posts about Rick's situation, so I'm a little intrigued here. When he was first diagnosed, I'm not sure what kind of treatment he had, or was the HIPEC surgery the first treatment? If it was and now the doctor is saying he needs to do the 6 months of 5FU/Avastin, that makes sense to me.... even if there was no visible signs of cancer after the surgery, it is pretty standard to do 6 months of chemo post-surgery, just to make sure that the patient is given every possible chance of catching any stray cancer cells that might be floating around one's system, especially after surgery. So, assumng the PET/CT scans come back clean, then you can sort of look at the 5FU/Avastin as an "insurance policy", so to speak.

    Where I am confused is where the doctor said if the 5FU/Avastin doesn't work, then all you are left with is trials. I'm assuming he means by "not working" is that if the PET/CT scan show cancer anywhere, be them new growths somewhere or growths in the peritoneal cavity and after 6 months of this chemo these growths are larger or there are new growths... then all that has really proved is the 5FU/Avastin chemo didn't work as well as you would like it to. If that's the case, then why can't he try some of the other chemos such as Ertibux (if he is KRAS tested and found that it might be beneficial) or Irinitocan, or a combination of any of these? Why does Rick's doctor think that if this one combo of 5FU/Avastin is the only chemo he can try? Or did I miss something in some of the posts that may have explained this?

    Cheryl

    Hi Cheryl, Thank you for

    Hi Cheryl, Thank you for asking, and no, you didn't really miss anything - your second paragraph is right on. But for reference, I'll provide you with a quick summary:
    Rick was diagnosed in Dec. '09 and had colon surgery to remove the tumor; Folfox (4 cycles), liver surgery in March to remove 4 tumors; Folfox through August; six weeks later PET/CT found tumors in peritoneal cavity; Nov - HIPEC; recovery for two months, awaiting scans on Wednesday. Dr. said that since Folfox didn't stop the tumors from developing in the peritoneal cavity, she will put him on 5FU/Avastin for at least 6 months. And since Rick is a Kras mutant, Eribux won't work. Therefore, if the 5FU and Avastin don't work or stop working, she indicated that there's nothing left but trials. That's why we're now hesitant to leave Dana Farber, but we really don't like this particular onc. very much. You know, I really HATE cancer!! :-(

    Take care, Cynthia
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #31
    LivinginNH said:

    Hi Pepe, I don't know if

    Hi Pepe, I don't know if anyone has ever told you, but it's really nice how you try to keep track of everyone. I always look forward to your posts, they often make me smile when I'm feeling down. :-) In regard to your question, we'll know if the HIPEC surgery was successful after we have the PET/CT scans on Wednesday. However, because the cancer reached the peritoneal cavity (although there was no visible cancer after surgery), the new doctor says that he'll need to go on 6 months of 5FU with Avastin in any case. :-( And Hugs right back at you! Cynthia

    Cynthia ,thank you so much!
    Since I was a kid I have been too " nosy " hahahaha!
    Lots of luck on Wednesday, l will pray for it!
    Hugs!

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