3 months of Chemo vs. 6 Months

shu273
shu273 Member Posts: 44

My husband was diagnosed with Colon Cancer stage 3B. Specifically, T3 N1 M0. 1/17 nodes was positive. Our Oncologist has proposed 6 months of Oxaliplatin and Fluorouracil (5FU FOLFOX). After reading a publication from another Cancer institution that prescribes Capecitabine (CAPEOX) by pill in place of theFluorouracil (5FU FOLFOX) via IV. and still prescribes the Oxaliplatin but reduces the treatment to 3 months instead of 6 months. This is critical for reducing the Nuerapathy effects from the Oxaliplatin. This makes so much sense to us and we are meeting with our Oncolgist Tuesday in hopes that he will agree to treat according to this plan. If not we would have to fly cross country for treatment every two weeks and delay starting the Chemo to establish patient status at the new treatment center. Looking for anyone familiar with this treatment plan that can help provide input and education specific to my husbands diagnosis.

Thanks,

Andrea

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Comments

  • NewHere
    NewHere Member Posts: 1,390 Member
    Three Months

    When I was starting FOLFOX in 2015 there were studies at that time for the U.S. to go to 6 sessions instead of 12 because the efficacy is about the same.  Places outside the U.S.  (I think Japan was one) and others use 3 months.  I am not sure how studies have gone or change in protocals.  Also my oncologist at the time said they would do no more than 9 of the 12 with Oxi in it, and would hope to make a minimum of 8 though with the Oxi, because after 9 treatments the incremental benefit of preventing cancer recurrance was outweighed by the risk of neuropathy.    ( I was worse stage than your husband, with more lymph nodes).  

  • airborne72
    airborne72 Member Posts: 286 Member
    My Experience

    Andrea:

    My stage was 2 and the need for follow-up chemo was open for debate, at least in my opinion.  My oncologist initially recommended 12 sessions of 5FU, but when I challenged him about the negative effects of the Oxy he reneged and stated that recent studies indicated that the benefit of infusions beyond #6 were statistically insignificant.  We agreed to a regimen of only 6 infusions and I reserved the right to stop whenever I determined that the negative effects on my current health outweighed the contemplated benefits of additional infusions.

    After three infusions I was losing weight rapidly (down to 128 lbs) with no energy, stamina or emotional reserves.  The neuropathy was beginning to strengthen and linger after each infusion.  I said no more.

    That was in December 2017.  I am currently NED, without any neuropathy, but I am still trying to rejuvenate my energy level and increase my stamina.  Incidentally, I will be 68 this month.

    Decisions about chemo/radiation therapy are unique to the patient.  In my opinion, none of us should make recommendations, only provide personal experience.  This disease is insidious and can undermine a lifetime of effort, joy and hope.  From a distance, I offer my encouragement to both of you as you consider the options and select a course of action.

    Jim

     

  • ron50
    ron50 Member Posts: 1,723
    How things have changed

        I had stage 3c back in 1998. I had 48 weekly doses of 5Fu by infusion enhanced every second week with levamisole. Levamisole was banned in the early 2000's because of serious side effects plus they decided it was not particularly effective. I'm not sure that statement was not particularly accurate as I have been cancer free for 21 years. I do agree that lavamisole had nasty side effects. Ron.

  • Trubrit
    Trubrit Member Posts: 5,625 Member
    I was also on FOLFOX - 5FU

    Initially diagnosed Stage 3B, I had nine treatments of FOLFOX & 5 FU followed by radiation and more 5FU.  It was not a joy ride, but made it through.  A met was discovered growing in my liver nine months after treatment ended. 

    Now Stage IV with a liver ablation in April 2014, I celebrate FIVE years NED (no evidence of disease) on the 24th. 

    Decisions are hard.  I have permanent neuropathy from the FOLFOX, and other long-term side effects, but being alive and loving it, mean that I do not regret at all, what I suffered to get to this point. 

    While travelling 160 miles to and from treatment was doable, I stayed in the big city for radiation, and there would have been absolutely no way I could have travelled. 

    Treatments affect people in different ways, and you just don't know how it is going to affect you until you're in it up to your neck. 

    Welcome to the forum.  I wish your husband all the best as he moves forward in whatever treatment plan you both choose. 

    Tru

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,256 Member
    edited April 2019 #6
    Negotiate

    The patient controls the treatment, not the doctor.  After a bad initial experience with the oxilaplatin, I agreed to only 3 months of capecitabine (I was 3b as well).  The oncologist talked me into a fourth month and it almost killed me.  You should also talk to the doctor about a reduced initial dose, so that you can see how he reacts to the chemo--everyone reacts differently.

    Capecitabine, to the best of my reseach, is marginally more effective than 5FU.  It sure was a lot more convenient for me, plus, if I had a bad day, I could modify the dosage on the spot or even take a day off.  If that is what appeals to you, that is what you should get.  You should not have to switch doctors.  Just be assertive (and educated) when you meet with your doctor.  There are some old posts that discuss the profit motive of using Folfox, although some of these motivations may have declined as the reimbursement programs have changed.  

    The standard has shifted to a three month course of treatment, but some physicians still stick with the six month regime.  There are many studies available on pubmed that discuss this issue.

    You will hear over and over again on this board that you have to be your own advocate.  In my experience, it is completely true.

    There are also many steps you can take to optimize your chances of survival that the doctors seem to never discuss.  Simple things like getting plenty of exercise and sunshine, eating a pescovegetarian diet, or maximizing your vitamin D levels.  A skim through the posts on this board can alert you to many of these strategies.

    Best of luck with these issues, and let us know how things turn out.

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,256 Member

    My Experience

    Andrea:

    My stage was 2 and the need for follow-up chemo was open for debate, at least in my opinion.  My oncologist initially recommended 12 sessions of 5FU, but when I challenged him about the negative effects of the Oxy he reneged and stated that recent studies indicated that the benefit of infusions beyond #6 were statistically insignificant.  We agreed to a regimen of only 6 infusions and I reserved the right to stop whenever I determined that the negative effects on my current health outweighed the contemplated benefits of additional infusions.

    After three infusions I was losing weight rapidly (down to 128 lbs) with no energy, stamina or emotional reserves.  The neuropathy was beginning to strengthen and linger after each infusion.  I said no more.

    That was in December 2017.  I am currently NED, without any neuropathy, but I am still trying to rejuvenate my energy level and increase my stamina.  Incidentally, I will be 68 this month.

    Decisions about chemo/radiation therapy are unique to the patient.  In my opinion, none of us should make recommendations, only provide personal experience.  This disease is insidious and can undermine a lifetime of effort, joy and hope.  From a distance, I offer my encouragement to both of you as you consider the options and select a course of action.

    Jim

     

    Thanks, Jim, sage advice about trying to keep references to personal experience.  I strive to do so, although I am sure that at times I fail.  But it is a lesson well worth emphasizing.

  • danker
    danker Member Posts: 1,276

    My Experience

    Andrea:

    My stage was 2 and the need for follow-up chemo was open for debate, at least in my opinion.  My oncologist initially recommended 12 sessions of 5FU, but when I challenged him about the negative effects of the Oxy he reneged and stated that recent studies indicated that the benefit of infusions beyond #6 were statistically insignificant.  We agreed to a regimen of only 6 infusions and I reserved the right to stop whenever I determined that the negative effects on my current health outweighed the contemplated benefits of additional infusions.

    After three infusions I was losing weight rapidly (down to 128 lbs) with no energy, stamina or emotional reserves.  The neuropathy was beginning to strengthen and linger after each infusion.  I said no more.

    That was in December 2017.  I am currently NED, without any neuropathy, but I am still trying to rejuvenate my energy level and increase my stamina.  Incidentally, I will be 68 this month.

    Decisions about chemo/radiation therapy are unique to the patient.  In my opinion, none of us should make recommendations, only provide personal experience.  This disease is insidious and can undermine a lifetime of effort, joy and hope.  From a distance, I offer my encouragement to both of you as you consider the options and select a course of action.

    Jim

     

    Time difference

    I was Dxed in 2009.  Stage2 bordering on3. 5 weeks of fu5 with concurrent  radiation.  Then 5 week rest before recection.

    Was77 at that time.  Will be 87 in about 6 weeks. NED for 10 years now.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Treatment

    It's such a personal decision and one you have to weigh carefully.  Make sure that you are in control of the situation but also take your doctor's opinion, if you trust them, in your treatment.  My doctor made me continue my treatment of FOLFOX treatment after telling her my hands and feet were so numb all the time and she said "it's just a nuisance".  Well that nuisance turned into life long neuropathy after 10 years.  I'm all for FOLFOX treatment as that shrunk my initial tumor so much along with radiation and has kept me cancer free for 10 years.  You just have to weight the pros with the cons and hope you can come up with the right decision.

    Kim

  • JanJan63
    JanJan63 Member Posts: 2,478
    edited April 2019 #10
    Such a tough decision. As

    Such a tough decision. As mentioned, you have to do what you think is best for both of you, particularly for your husband. Six months of Folfox is a very long time. As mentioned, the protocal in Europe is now 6 treatments, down from 12. I assume 6 months would be a total of 12 treatments? Here's my opinion. It seems like everyone here gets Folfox at some point but I haven't heard a bunch of positive stories about it being a cure, just stories about how miserable it is. I'd like to hear someone say that it actually did them some good. I'm sure it does, I just haven't seen very many stories.

    Of course, if it's used as mop up chemo then who would know. If the cancer doesn't come back the assumption is that the Folfox worked. But maybe it wouldn't have anyway. Mine came back after a round of something like 8 out of 10 treatments with it. But it took over a year and I started it late due to issues with my surgery.

    I can't imagine using it in conjunction with another chemo unless it's something that can mitigate the side effects.

    Sorry, I'm not very helpful, these are just my thoughts.

    Jan

  • shu273
    shu273 Member Posts: 44
    JanJan63 said:

    Such a tough decision. As

    Such a tough decision. As mentioned, you have to do what you think is best for both of you, particularly for your husband. Six months of Folfox is a very long time. As mentioned, the protocal in Europe is now 6 treatments, down from 12. I assume 6 months would be a total of 12 treatments? Here's my opinion. It seems like everyone here gets Folfox at some point but I haven't heard a bunch of positive stories about it being a cure, just stories about how miserable it is. I'd like to hear someone say that it actually did them some good. I'm sure it does, I just haven't seen very many stories.

    Of course, if it's used as mop up chemo then who would know. If the cancer doesn't come back the assumption is that the Folfox worked. But maybe it wouldn't have anyway. Mine came back after a round of something like 8 out of 10 treatments with it. But it took over a year and I started it late due to issues with my surgery.

    I can't imagine using it in conjunction with another chemo unless it's something that can mitigate the side effects.

    Sorry, I'm not very helpful, these are just my thoughts.

    Jan

    3 Months of Chemo vs. 6 Months

    I very much appreciate the input. We are meeting the Oncologist tomorrow and challenging him to treat for three months vs. 6 months and to prescribe the pill form of capecitibine and oxaliplatin. There was a study called the IDEA study that showed it was as effective as 6 months and obviously less toxic simply due to reduction of treatment by 50%. They do it in Washington D.C.. So, if we have to fly for treatments we will. Just hoping our Oncoligist will be open to this treatment plan. We already drive three hours each way and that makes for a very long day. He is alo participating in a trial for Lidocaine injections. 50% of the people on the trial get placibo and the other get the Lidocaine. The hope is the Lidocaine will help with the Nueropathy that 70% of people experience from the Oxaliplatin. 

    Thanks again for the input. It is very valuble and much aprreciated!!

    Andrea

  • shu273
    shu273 Member Posts: 44
    NewHere said:

    Three Months

    When I was starting FOLFOX in 2015 there were studies at that time for the U.S. to go to 6 sessions instead of 12 because the efficacy is about the same.  Places outside the U.S.  (I think Japan was one) and others use 3 months.  I am not sure how studies have gone or change in protocals.  Also my oncologist at the time said they would do no more than 9 of the 12 with Oxi in it, and would hope to make a minimum of 8 though with the Oxi, because after 9 treatments the incremental benefit of preventing cancer recurrance was outweighed by the risk of neuropathy.    ( I was worse stage than your husband, with more lymph nodes).  

    3 Months of Chemo vs. 6 Months

    We are meeting the Oncologist tomorrow and challenging him to treat for three months vs. 6 months and to prescribe the pill form of capecitibine and oxaliplatin. There was a study called the IDEA study that showed it was as effective as 6 months and obviously less toxic simply due to reduction of treatment by 50%. They do it in Washington D.C.. So, if we have to fly for treatments we will. Just hoping our Oncoligist will be open to this treatment plan. We already drive three hours each way and that makes for a very long day. He is alo participating in a trial for Lidocaine injections. 50% of the people on the trial get placibo and the other get the Lidocaine. The hopeis the Lidocaine will help with the Nueropathy that 70% of people experience from the Oxaliplatin. 

    Thank you so very much for your input.

    Andrea

  • shu273
    shu273 Member Posts: 44

    Treatment

    It's such a personal decision and one you have to weigh carefully.  Make sure that you are in control of the situation but also take your doctor's opinion, if you trust them, in your treatment.  My doctor made me continue my treatment of FOLFOX treatment after telling her my hands and feet were so numb all the time and she said "it's just a nuisance".  Well that nuisance turned into life long neuropathy after 10 years.  I'm all for FOLFOX treatment as that shrunk my initial tumor so much along with radiation and has kept me cancer free for 10 years.  You just have to weight the pros with the cons and hope you can come up with the right decision.

    Kim

    3 Months of Chemo vs. 6 Months

    Thank you so very much for your reply. We will know after tommorow if our Oncoligist will treat according to the 3 month regimine or if we will have to delay to seek a seond opinion.

  • shu273
    shu273 Member Posts: 44
    Trubrit said:

    I was also on FOLFOX - 5FU

    Initially diagnosed Stage 3B, I had nine treatments of FOLFOX & 5 FU followed by radiation and more 5FU.  It was not a joy ride, but made it through.  A met was discovered growing in my liver nine months after treatment ended. 

    Now Stage IV with a liver ablation in April 2014, I celebrate FIVE years NED (no evidence of disease) on the 24th. 

    Decisions are hard.  I have permanent neuropathy from the FOLFOX, and other long-term side effects, but being alive and loving it, mean that I do not regret at all, what I suffered to get to this point. 

    While travelling 160 miles to and from treatment was doable, I stayed in the big city for radiation, and there would have been absolutely no way I could have travelled. 

    Treatments affect people in different ways, and you just don't know how it is going to affect you until you're in it up to your neck. 

    Welcome to the forum.  I wish your husband all the best as he moves forward in whatever treatment plan you both choose. 

    Tru

    suggestions for preparing for Chemo

    Thank you so much for the reply. Do you have any suggestions for preparing for and managing the Chemo. They said to drink lots of water to flush the body the day after the treatment but not much else.

    Thanks,Andrea

  • shu273
    shu273 Member Posts: 44

    Negotiate

    The patient controls the treatment, not the doctor.  After a bad initial experience with the oxilaplatin, I agreed to only 3 months of capecitabine (I was 3b as well).  The oncologist talked me into a fourth month and it almost killed me.  You should also talk to the doctor about a reduced initial dose, so that you can see how he reacts to the chemo--everyone reacts differently.

    Capecitabine, to the best of my reseach, is marginally more effective than 5FU.  It sure was a lot more convenient for me, plus, if I had a bad day, I could modify the dosage on the spot or even take a day off.  If that is what appeals to you, that is what you should get.  You should not have to switch doctors.  Just be assertive (and educated) when you meet with your doctor.  There are some old posts that discuss the profit motive of using Folfox, although some of these motivations may have declined as the reimbursement programs have changed.  

    The standard has shifted to a three month course of treatment, but some physicians still stick with the six month regime.  There are many studies available on pubmed that discuss this issue.

    You will hear over and over again on this board that you have to be your own advocate.  In my experience, it is completely true.

    There are also many steps you can take to optimize your chances of survival that the doctors seem to never discuss.  Simple things like getting plenty of exercise and sunshine, eating a pescovegetarian diet, or maximizing your vitamin D levels.  A skim through the posts on this board can alert you to many of these strategies.

    Best of luck with these issues, and let us know how things turn out.

    3 Months of Chemo vs. 6 Months

    We are meeting the Oncologist tomorrow and challenging him to treat for three months vs. 6 months and to prescribe the pill form of capecitibine and oxaliplatin. There was a study called the IDEA study that showed it was as effective as 6 months and obviously less toxic simply due to reduction of treatment by 50%. They do it in Washington D.C.. So, if we have to fly for treatments we will. Just hoping our Oncoligist will be open to this treatment plant. We already drive three hours each way and that makes for a very long day. He is alo participating in a trial for Lidocaine injections. 50% of the people on the trial get placibo and the other get the Lidocaine. The hopw is the Lidocaine will help with the Nueropathy that 70% of people experience from the Oxaliplatin. 

    Any advise on tips for dealing with the effects of chemo before and after each treatment is welcome. So far all we have been told is drink lots of water the day after and avoid cold objects and take hot baths and rest.

    Andrea

  • shu273
    shu273 Member Posts: 44
    ron50 said:

    How things have changed

        I had stage 3c back in 1998. I had 48 weekly doses of 5Fu by infusion enhanced every second week with levamisole. Levamisole was banned in the early 2000's because of serious side effects plus they decided it was not particularly effective. I'm not sure that statement was not particularly accurate as I have been cancer free for 21 years. I do agree that lavamisole had nasty side effects. Ron.

    suggestions for preparing for Chemo

    We are meeting the Oncologist tomorrow and challenging him to treat for three months vs. 6 months and to prescribe the pill form of capecitibine and oxaliplatin. There was a study called the IDEA study that showed it was as effective as 6 months and obviously less toxic simply due to reduction of treatment by 50%. They do it in Washington D.C.. So, if we have to fly for treatments we will. Just hoping our Oncoligist will be open to this treatment plan. We already drive three hours each way and that makes for a very long day. He is alo participating in a trial for Lidocaine injections. 50% of the people on the trial get placibo and the other get the Lidocaine. The hope is the Lidocaine will help with the Nueropathy that 70% of people experience from the Oxaliplatin. 

    Any advise on tips for dealing with the effects of chemo before and after each treatment is welcome. So far all we have been told is drink lots of water the day after and avoid cold objects and take hot baths and rest.

    Andrea

  • shu273
    shu273 Member Posts: 44
    danker said:

    Time difference

    I was Dxed in 2009.  Stage2 bordering on3. 5 weeks of fu5 with concurrent  radiation.  Then 5 week rest before recection.

    Was77 at that time.  Will be 87 in about 6 weeks. NED for 10 years now.

    3 Months of Chemo vs. 6 Months

    That is great to hear. any pointer on preparing for and getting through the chemo. So far the advise is drink lots of water the day after treatment, avoid cold objects, take hot baths, and lots of rest.

    Thanks,

    Andrea

  • JanJan63
    JanJan63 Member Posts: 2,478
    Sounds like a good plan.

    Sounds like a good plan. Always remember that you're in the driver's seat, not the doctors. They suggest what they'd like to do but they're focused on the outcome. You have to be focused on getting through it. Maybe doing 3 months and then a check to see how it worked would be a good plan.

    Take care!

    Jan

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,256 Member
    shu273 said:

    3 Months of Chemo vs. 6 Months

    We are meeting the Oncologist tomorrow and challenging him to treat for three months vs. 6 months and to prescribe the pill form of capecitibine and oxaliplatin. There was a study called the IDEA study that showed it was as effective as 6 months and obviously less toxic simply due to reduction of treatment by 50%. They do it in Washington D.C.. So, if we have to fly for treatments we will. Just hoping our Oncoligist will be open to this treatment plant. We already drive three hours each way and that makes for a very long day. He is alo participating in a trial for Lidocaine injections. 50% of the people on the trial get placibo and the other get the Lidocaine. The hopw is the Lidocaine will help with the Nueropathy that 70% of people experience from the Oxaliplatin. 

    Any advise on tips for dealing with the effects of chemo before and after each treatment is welcome. So far all we have been told is drink lots of water the day after and avoid cold objects and take hot baths and rest.

    Andrea

    Tips

    A few tips, get the infusion in the non-dominant arm (left, for most of us).  If he has hairy arms, consider shaving them in the infusion area (I hate the tape ripping off the hair as well).

    Start immediately with a heavy cream (I used generic Eucerin from Walmart) on the hands and feet every day.  Foot and hand symptoms are frequent, especially on capecitabine.

    Exercise.  It may seem counterintuitive, but exercise helped me with all of the symptoms of chemo.  It also helps spread the chemo further in the body and may well make it more effective.

    Have anti-nausea meds presribed and filled before the first session.  I remember walking into a grocery store after my first infusion and having to stare at the ceiling so I would not puke, I was so nauseated by the foods there.  Also, be ready for problems touching cold foods.  I pulled a frozen dinner out of the freezer for a simple meal and it was like touching a live electric wire.  Thankfully, I threw it into the basket, not accross the supermarket, as some have described happening to them.

    Eat well and keep your weight up.  For me, my favorite foods became unpalletable.  Maybe avoid eating them for a while so you do not ruin your taste for them after you get off chemo.  Try to eat well, but if you cannot, eat what will keep your calories and energy up.

    Searching your chemo regime on this blog will bring countless recommendations that the doctors never mention.

    Best of luck, and let us know how it goes.

  • airborne72
    airborne72 Member Posts: 286 Member
    More Advice

    When I went through the adjuvant chemo (FOLFOX6) I was the proud sponsor of an ileostomy.  The chemo turned the output of my ostomy on HIGH.  During the hours while I was at the clinic being infused I had to empty my bag about 4 times.  That rate continued during the next 48 hours while I carried the infusion pack.  Rest/sleep became troublesome.

    As Sandia Buddy stated, eat whatever you can stomach.  The goal is to consume calories.  Your intestines will be assualted by the chemo; consequently, you will lose weight.  Also, realize that some of the things that you crave and eat during the chemo will become offensive to you after the treatment.  I fell in love with chocolate milk shakes but now I can't stand them.

    Hydration is so important.  I was not able to exert much physical activity like Sandia Buddy did due to some other physical ailments that plague me, but I know that it would have be a beneficial means of flushing my system.  I guess the bottom line is to try to maintain your previous (healty) lifestyle during the chemo to energize your body's natural recuperative abilities.

    No way around it though, chemo sucks.  Good luck.

    Jim

  • Friendinpenn
    Friendinpenn Member Posts: 70
    edited April 2019 #21
    ron50 said:

    How things have changed

        I had stage 3c back in 1998. I had 48 weekly doses of 5Fu by infusion enhanced every second week with levamisole. Levamisole was banned in the early 2000's because of serious side effects plus they decided it was not particularly effective. I'm not sure that statement was not particularly accurate as I have been cancer free for 21 years. I do agree that lavamisole had nasty side effects. Ron.

    I remember you! BIG FISH!!!!!

    I don't know if we ever chatted, but I remember you on this site....mainly because of the big fish!!!  Anyways.....I had colon, liver and lung cancer.....stage IV.....and now at over 10 years remission.....I'm clear....What a miracle.....so blessed

    I go for my yearly cancer center checkup on Thursday.....That got me back on this site....I'm glad you're doing well.....I know I will be too....

    Just wanted to say hello from a long ago friend from the forum.....Keep doing what you're doing my friend......JIM