Stopping 5-FU while it’s still working?

gfpiv
gfpiv Member Posts: 59 Member
edited March 2014 in Colorectal Cancer #1
First time poster, long time reader here. I was dx’d Stage IV with numerous unresectable liver metastases in Jan ’10, and am going on my 10th treatment of FOLFOX plus Avastin. I’ve had decent tumor and CEA response so far, but am still unlikely to ever be resectable (though I’m getting another opinion from MSKCC soon).

Anyway, I’m wondering if there are any other stage IV’s out there who did NOT have liver resections, but were still taken off of 5-FU after 12 treatments, even though the tumors had not progressed? If so, did you go directly to some other drug, or take a chemo break? After my 12th cycle, onc wants to put me on only Avastin until we get signs of disease progression (at which point I’m guessing we start Irinotecan/Cetuximab).

I understand that due to neuropathy / hand foot syndrome they typically take people off of Oxaliplatin after 12 cycles, but I had always thought that 5-FU could go on as long as you can take it? Naturally I’m concerned about only being on Avastin soon. My side effects have been typical but very manageable so far, and although my blood counts dip a bit at nadir, I’ve never missed a treatment or needed Neupogen.

What I’m wondering:
After tx #12, should I ask my onc to continue 5-FU plus Avastin until progression or side effects dictate otherwise? Should I ask to start Irino/Cetuxi immediately after tx #12 of FOLFOX? Or should I take onc’s advice and give my body a break to recoup from chemo, even though I feel great?

I understand that the “clinically right” answer probably has a lot to do with my specific CT, liver function, CEA and blood levels etc.…but I’m wondering if folks on here may also have thoughts/experiences to share?

P.S. Many thanks to all of the brave, intelligent and compassionate people that contribute to this forum. Your collective postings have been very informative, and knowing that many others are fighting the same battle has been invaluable in keeping my spirits up.

-Chip

Comments

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #2
    Hi Chip
    The cancer battles can go many different ways - one thing we must keep in mind is that the race is often times a marathon and not a sprint.

    You can always seek a 2nd opinion on your case and see if the protocol your current onc has you on would match that of the 2nd opinion that you were given. This can provide a comfort level and give you confidence that you are indeed on schedule for your particular fight.

    We all vary in how our bodies can assimilate the chemo and its side effects - some can take massive amounts and some folks need a break every now and then. Cancer did not get there overnight, so it won't be going anywhere overnight either - sometimes a break is good for the body to recuperate as well as the mind and your soul.

    Along with Avastin, Xeloda can also be used...it is 5fu in pill form, and is effective as well, but comes with additional hand/foot issues and stomach and intestinal issues as well.

    You can certainly address your concerns on what your treatments should be and why your onc has decided to take a break. Perhaps, he is evaluating to see what will change and which route he will take before deciding on the next course of the treatment.

    Cancer can become resistant to chemo and stop working and when it does, you have lost that drug from your arsenal. He may just be saving other types of chemo to use at a later date if he/she sees something changing in a big way.

    I would follow the onc's advice, but again you can always consult another oncologist for peace of mind, if you feel that you need another opinion.

    Look forward to hearing more from you.
    -Craig
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #3
    Chip,
    Welcome to our forum.

    Chip,

    Welcome to our forum.
  • geotina
    geotina Member Posts: 2,111 Member
    #4
    Chip
    My hubby was diagnosed 3/09, Stage IV, large and numerous mets to liver and lungs. He did 12 cycles of Folfox starting 5/09, then a break for just a couple of weeks around the holidays, and has been on 5FU weekly adding Avastin every other week since then. He is doing quite well, no progression, and after completing Folfox many, many of the mets disappeared and the rest were dramatically smaller. His infusions only last about 30/40 minutes so it is not terribly inconvenient, he only travels about a half hour from home for these infusions. I think it is about every 6 weeks that he skips a week. I might also add that George continued to work full time through this whole mess. He was very fortunate and handled the chemo like a champ.

    As long as he is doing well, it is my understanding we will continue with this program. His blood counts are very good as well as all liver function stuff. He will be getting another scan shortly, CT, (not sure but most likely July)and we will then see where we stand.

    Because of the heavy liver and lung involvement, no surgical procedure or radiation procedure is discussed at this time. He has not experienced any side effects from this program other than fatigue and neuropathy from the Folfox. We have not discussed the oral 5FU with the doctor, although I have brought it up to George, he would simply prefer the infusion than taking a bunch of pills every day.

    Take care - Tina
  • jillpls
    jillpls Member Posts: 238
    #5
    5-fu plus avastin
    HI, when I went of folfiri, my onc wanted me to stay on a maintenance of 5-fu and Avastin. he said that just Avastin isn't as effective as combined with a chemo drug. I stayed on that for about 10 months until I showed progression. Went back on folfox and Avastin for 8 cycles and am now taking a small break. Good luck and a second opinion is always good. Jill
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #6
    5FU or maybe Xeloda instead?
    Hi Chip,

    Have you considered or talked to your onc about taking Xeloda pills instead of 5FU (Xeloda is the pill version of 5FU and has been shown in studies to be just as effective and one particular study showed it a couple of percentage points more effective- but everyone responds differently) after your current treatment? If you're still at the unresectable stage, I'd probably be leery of going off chemo other than just Avastin too. It may be possible, though, that you need to give your body a chemo break, at least a short one, just to restore your energy, blood counts, etc. Maybe Avastin only (since it isn't considered an actual chemo), then maybe add the Xeloda in after a month or so.
    In my own case, any time I stop chemo, the cancer crap starts growing with a fervor again. I can't be on any kind of chemo break without worrying about the cancer growing. Hopefully that won't be your case, as I believe most people do better than that but, if you still have active cancer, I'd probably press to be on more than just the Avastin too.

    Best wishes to you-
    Lisa
  • snommintj
    snommintj Member Posts: 601
    #7
    lisa42 said:

    5FU or maybe Xeloda instead?
    Hi Chip,

    Have you considered or talked to your onc about taking Xeloda pills instead of 5FU (Xeloda is the pill version of 5FU and has been shown in studies to be just as effective and one particular study showed it a couple of percentage points more effective- but everyone responds differently) after your current treatment? If you're still at the unresectable stage, I'd probably be leery of going off chemo other than just Avastin too. It may be possible, though, that you need to give your body a chemo break, at least a short one, just to restore your energy, blood counts, etc. Maybe Avastin only (since it isn't considered an actual chemo), then maybe add the Xeloda in after a month or so.
    In my own case, any time I stop chemo, the cancer crap starts growing with a fervor again. I can't be on any kind of chemo break without worrying about the cancer growing. Hopefully that won't be your case, as I believe most people do better than that but, if you still have active cancer, I'd probably press to be on more than just the Avastin too.

    Best wishes to you-
    Lisa

    be your own advocate
    Learn as much as you can. Just because you have unresectable disease doesn't mean you have untreatable disease. You can attack this stuff in many different ways. If you haven't met with an interventional radiologist yet, go hire one. I had many tumors throughout the left lobe of my liver. My surgeon was just going to remove the entire left lobe until several more showed up in the right side. So when surgery wasn't an option I found other forms of treatment. I had bland embolization on the left side of my liver. The procedure lasted about two hours and required an overnight stay. I was back on the golf course in 2 weeks. It basically killed the left side of my liver for many months but I'm tumor free in the left side. My liver is now resectable but I'm not convinced a third resection is the answer. Once I get some of these lung mets cleared up I'm planning on having stereotactic radio surgery. There are two new kinds, Novalis and Rapidarc. Both are new and are showing fantastic results. I'm not saying these things can cure you, but if you can get all the detectable mets, you will buy yourself lots of time both on and off chemo. I'm currently covered with numerous tumors, but I'm also flirting with the possibility of being tumor free by august or september. Surgery isn't necessarily the answer. Go talk to some other folks and keep your chemo as a last option.
  • ktlcs
    ktlcs Member Posts: 358
    #8
    Question
    You mention you will be shortly getting a second opinion from MSK. When I contacted them for another opinion for Hank they told me that because he was already in treatment they would not see him. He would have to be off of any treatment with his current onc for their doctors to see him. If you don't mind my asking, you sound as if you are currently in treatment, how did you arrange to see someone there?
  • Erinb
    Erinb Member Posts: 293
    #9
    ktlcs said:

    Question
    You mention you will be shortly getting a second opinion from MSK. When I contacted them for another opinion for Hank they told me that because he was already in treatment they would not see him. He would have to be off of any treatment with his current onc for their doctors to see him. If you don't mind my asking, you sound as if you are currently in treatment, how did you arrange to see someone there?

    Same here. I think my
    Same here. I think my husband will be in treatment for a long time. Does that = no appointment? I went to OSU instead and I continue to do research to learn about treatment options.

    My husband did well on Avastin and Folfox. We saw a great response with it. As far as just Avastin? Our surgeon recommended it, but our oncologist said it hasn't been approved for treatment without a chemotherapy with it? That's why a second opinion is important.
  • gfpiv
    gfpiv Member Posts: 59 Member
    #10
    Erinb said:

    Same here. I think my
    Same here. I think my husband will be in treatment for a long time. Does that = no appointment? I went to OSU instead and I continue to do research to learn about treatment options.

    My husband did well on Avastin and Folfox. We saw a great response with it. As far as just Avastin? Our surgeon recommended it, but our oncologist said it hasn't been approved for treatment without a chemotherapy with it? That's why a second opinion is important.

    Good feedback
    Thank you everyone for some great thoughts. I do agree that as a relative newcomer to “the club”, it’s probably healthy for me to come to terms with the fact that often cancer is a marathon, not a sprint. I just hope the cancer got that memo too; guess we’ll find out over the next several months.

    I did learn that my onc was concerned that my CBC results have been trending toward borderline for treatment lately, so he wants to give me at least a short break. So I’ll still get an MSK opinion, but for the short term will likely keep my fingers crossed on Avastin and consider some complementary therapies (IP6/DCA/circumin/cimetidine etc?)…and hopefully not end up spending an exorbitant amount of time/money/hope on snake oil.

    Hearing about some of the stuff the brave people on this board have undergone in their treatments has truly been an inspiration to keep my chin up. And I’m lucky to still have a number of standard (and non-standard treatment) options in my back pocket when it’s “game on” again. BTW, thanks John for the heads-up on radiology. Like many of you, I’ve spent more than my fair share of time on the internet researching treatments, but hadn’t realized that radiotherapy can be a viable option for liver mets, so I’ll definitely look into that too.

    As for the consultation: The MSK admin didn’t specifically say they wouldn’t see me while I was on active treatment with another onc…however she did suggest we schedule my consultation for just after my last/12th FOLFOX treatment and subsequent CT scan, in about 5 weeks. Coincidence? Or maybe they were okay with it since I’m mainly requesting a ‘surgical opinion’ from MSK - as opposed to a ‘general oncologist opinion’? (Though I’ll admit I am also curious about HAI. I know MSK is a pioneer on that front, and at this point I’m up for just about anything that might buy me a shot at resectability.)

    Thanks again folks, and my continued best wishes to you all.
    -Chip
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #11
    Erinb said:

    Same here. I think my
    Same here. I think my husband will be in treatment for a long time. Does that = no appointment? I went to OSU instead and I continue to do research to learn about treatment options.

    My husband did well on Avastin and Folfox. We saw a great response with it. As far as just Avastin? Our surgeon recommended it, but our oncologist said it hasn't been approved for treatment without a chemotherapy with it? That's why a second opinion is important.

    Erinb- Avastin
    Erin,

    I recently asked my onc several questions about Avastin when we were first talking about adding it into my current chemo mix (gemzar & Xeloda). I had thought I remembered him saying a while back that insurance might give us a hard time about approving Avastin this far into my treatment. He replied that as long as it's prescribed along with either 5FU or Xeloda, it's not a problem & that it's not approved just to be taken by itself.
    So, if your onc requests it along w/ either 5FU or Xeloda for your husband, it shouldn't be a problem to get approval for your insurance. The reasoning behind this is that it supposedly works better when given together with one of these chemo agents, rather than just by itself.

    Lisa
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #12
    Erinb said:

    Same here. I think my
    Same here. I think my husband will be in treatment for a long time. Does that = no appointment? I went to OSU instead and I continue to do research to learn about treatment options.

    My husband did well on Avastin and Folfox. We saw a great response with it. As far as just Avastin? Our surgeon recommended it, but our oncologist said it hasn't been approved for treatment without a chemotherapy with it? That's why a second opinion is important.

    Erinb- Avastin
    oops- it posted twice.
  • oceanave2
    oceanave2 Member Posts: 1
    edited October 2016 #13
    lisa42 said:

    5FU or maybe Xeloda instead?
    Hi Chip,

    Have you considered or talked to your onc about taking Xeloda pills instead of 5FU (Xeloda is the pill version of 5FU and has been shown in studies to be just as effective and one particular study showed it a couple of percentage points more effective- but everyone responds differently) after your current treatment? If you're still at the unresectable stage, I'd probably be leery of going off chemo other than just Avastin too. It may be possible, though, that you need to give your body a chemo break, at least a short one, just to restore your energy, blood counts, etc. Maybe Avastin only (since it isn't considered an actual chemo), then maybe add the Xeloda in after a month or so.
    In my own case, any time I stop chemo, the cancer crap starts growing with a fervor again. I can't be on any kind of chemo break without worrying about the cancer growing. Hopefully that won't be your case, as I believe most people do better than that but, if you still have active cancer, I'd probably press to be on more than just the Avastin too.

    Best wishes to you-
    Lisa

    Hi Lisa

    Hi Lisa, are you still here on the forum?  I was wondering how you're doing with the tagamet and if it helped with your stage four colon cancer.  Please let me know.  Thanks.

    John

     

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    edited October 2016 #14
    oceanave2 said:

    Hi Lisa

    Hi Lisa, are you still here on the forum?  I was wondering how you're doing with the tagamet and if it helped with your stage four colon cancer.  Please let me know.  Thanks.

    John

     

    Gone but not forgotten

    Lisa has passed on from this world, along with several other members who posted to this old thread. 

    There are many new members, who are posting that have used Tagamet. Why don't you open a new thread and they will answer you there. 

    Welcome to the forum.

    SUE

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