Folfax reduced treatments from 12 to 6

LindaK.
LindaK. Member Posts: 506 Member
in Colorectal Cancer #1

Hello everyone, newbie here.  I've been searching all over the web for information on people like my husband.  He was diagnosed December, 2012.  Right hemi-colectomy, 2 feet of colon removed, 13 lymph nodes.  Stage 2 with no lymph nodes involved, large tumor removed with resection, very successful.  Oncologists and all other doctors involved recommended the Folfox 12 treatment regimen every other week.  He started in late January and had 5 treatments with very little trouble.  Treatment #6 he started having stomach cramps in the office, nausea all evening, vomiting, compazine, etc.  Next day ended up back at oncology center for fluids due to dehydration and low bp.  More anti-nausea meds, much more vomiting.  Over to ED for CT scan, small bowel obstruction found near surgical site.  Nasty NG tube again and admission to hospital.  Obstruction cleared on its own with belly rest of 48 hours.  Back home after 4 days with short term diet restrictions and Metamucil added to daily meds.  Oncologist gave him another week off from chemo to review his case.  Went back last Tuesday and had 5FU chemo only (with lucavorin infused in the office - no oxaliplatin) to see how he would tolerate just the 5FU.  He's had cumulative constipation throughout chemo, gets better just in time for next treatment.  Our oncologist is cautious and we trust him.  We go back tomorrow for follow up to last week's 5FU.  A few choices he may have:  No more chemo, 6 more 5FU only, 1 more oxaliplatin and 5FU, 6 more complete Folfox.  The risks of another bowel obstruction have to be weighed against this treatment for Stage 2 - that's where I can't find any information.  He is 60.  My husband is hoping he'll say "You're fine, you don't need anymore chemo" but we all know none of is ever "fine" after receiving a cancer diagnosis.

They feel the latest obstruction was caused by cumulative constipation and possibly scar tissue compressing bowel.

I'm wondering if anyone on this board has had a similar experience or had to stop the Folfox and how they did after that.  I'm thinking the oncologist will give us the information he knows and let my husband decide what he wants to do.  Another oncologist in the group did tell us studies are being done to review 6 treatments. vs. 12, but nothing is recommended yet.

Thanks in advance for anything anyone can share on this. 

Comments

  • Barnaby
    Barnaby Member Posts: 33
    #2
    Constipation

    I have had four treatments and have constipation issues with all.  I don't have an obstruction as when it decides to come out it keeps coming for a few hours.  So I don't have any advice but feel for him.

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #3
    Was he getting a steroid

    Was he getting a steroid before, during and after chemo?  My husband had a problem with constipation until they cut his steroid dose in half. 

  • db8ne1
    db8ne1 Member Posts: 142 Member
    #4

    Sorry to hear about your husband.  Unfortunately, I don't have any recommendations as I'm a bit behind him in my treatment.  I was dx'd early December 2012 with what looks like Stage III (T3 with possible N1).  I had chemoradiation first - from January through mid February.  Chemoradiation turned the tumor into an ulcer.  Node disappeared. Surgery 4/11.  Currently recovering and waiting to see oncologist - who will likely recommend the same treatment that your husband is on.  As such, I'm curious as to what your husband's doctors recommendation is - for my informational purposes.  I've done lots of research and it appears that the Oxaliplatin is the culprit in weathering the Folfox treatment, but many of the studies I've found said that 6 infusions could be more than sufficient.  Many patients don't make it for the full 12 anyway - due to side effects - namely neuropathy and potential for permanent damage. 

    Please keep us updated.  We are pulling for him!

     

    J

  • lilacbrroller
    lilacbrroller Member Posts: 412 Member
    #5
    lactulose

    I had wicked constipation from the Folfox, probably from the anti-nausea steroid. My GP prescribed lactulose (a sugar) which did the trick. four tablespoons a day kept things moving along really well. If four wasn't enough, he said to take as much as I needed. I had some really bad days with constipiation but once I got on a routine with the lactulose, I was fine. MIralax, enemas, nothing worked for me except the sugar.  Even eating lots of fiber and drinking prune juice did nothing Cry I did get through all 12 treatments, though. I got the neuropathy on the last hit and three months out I am a bit better.

     

    good luck to your husband. 

     

    - Karin

  • abrub
    abrub Member Posts: 2,174 Member
    #6
    I had constipation with Folfox, too

    I knew that I would start Senna and Colace when I had chemo, and keep that up nightly to keep things moving.  Things never got badly backed up.  I only made it through 5 of Folfox; plus 2 rounds without Oxali.  I quit after 7 treatments because the side effects/neuropathy was too severe, and also my onc told me that with my cancer (appendix) they didn't know for certain tha Folfox was effective, only that it was a best guess.

    I've also heard that research has been done showing that 8 treatments are usually adequate, tho my onc still wanted me to aim for 12; there may be similar info on 6.

    Good luck!

  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    #7
    Stage II and chemo

    Welcome LindaK,

    I am 3 1/2 yrs. out from surgery, 3 yrs out from chemo. I too was stage II, T3 tumor /right side, 26 nodes taken. I survived 5 Folfox treatments, and then was placed on Xeloda ( oral 5 Fu ) for 4 rounds and then the oncologist called it quits because the side effects were just too harsh.I had severe neuropathy in feet and hands, had started having to use a walker, and I still have residual neuropathy 3 yrs.out.I guess one could say that I had 9 chemo treatments in all, 4 minus the Oxi.

    I have had clear scans each & every time so far. The only thing that might be of concern to me would be the limited number of lymph nodes taken from your husband. Stage II has a very grey area and some doctors do no chemo and some hit it with the big guns. They really don't know as much as about stage II as they do other stages as far as the treatment protocol.

    Your husband might do fine on just 5Fu infusion or on Xeloda. Oxaliplatin ( the OX in Folfox ) is brutal for most people.

    Best wishes to you and your husband.

    -Pat

  • LindaK.
    LindaK. Member Posts: 506 Member
    #8
    Jaylo969 said:

    Stage II and chemo

    Welcome LindaK,

    I am 3 1/2 yrs. out from surgery, 3 yrs out from chemo. I too was stage II, T3 tumor /right side, 26 nodes taken. I survived 5 Folfox treatments, and then was placed on Xeloda ( oral 5 Fu ) for 4 rounds and then the oncologist called it quits because the side effects were just too harsh.I had severe neuropathy in feet and hands, had started having to use a walker, and I still have residual neuropathy 3 yrs.out.I guess one could say that I had 9 chemo treatments in all, 4 minus the Oxi.

    I have had clear scans each & every time so far. The only thing that might be of concern to me would be the limited number of lymph nodes taken from your husband. Stage II has a very grey area and some doctors do no chemo and some hit it with the big guns. They really don't know as much as about stage II as they do other stages as far as the treatment protocol.

    Your husband might do fine on just 5Fu infusion or on Xeloda. Oxaliplatin ( the OX in Folfox ) is brutal for most people.

    Best wishes to you and your husband.

    -Pat

    Thanks to all and I meant "Folfox" not "Folfax" :-)

    Wow, I guess I have finally found the right place for information and support - thank you all for responding so quickly and sharing your own stories.  I have added several more questions to my list for the doctor for today's appointment.  Yes, he has been getting a steroid before the treatment, which has been cut down.  The Oxaliplatin has also been cut.  Dr. told us he gave him "the full whammy" to start with and also told us most people have adjustments throughout their treatments.  The steroid had also been causing his blood sugars to be extremely high and now he takes insulin also (he is diabetic, but took pills before chemo started).  I will ask about the sugar, if it is possible because of his diabetes.  I'm not sure why they only tested 13 lymph nodes, maybe the surgeons felt that's all they needed at the time.  He also had some neuropathy worse during the first 2 or 3 treatments, so that's another reason they reduced the oxaliplatin. Neuropathy is occasional, but better now.   He has also been taking 2 or 3 Colace/day almost every day since the chemo started in January.  I will take the information from all of you nice people to his doctor today and let you know what the recommendation is.

    Thank you!

  • LindaK.
    LindaK. Member Posts: 506 Member
    #9
    db8ne1 said:

    Sorry to hear about your husband.  Unfortunately, I don't have any recommendations as I'm a bit behind him in my treatment.  I was dx'd early December 2012 with what looks like Stage III (T3 with possible N1).  I had chemoradiation first - from January through mid February.  Chemoradiation turned the tumor into an ulcer.  Node disappeared. Surgery 4/11.  Currently recovering and waiting to see oncologist - who will likely recommend the same treatment that your husband is on.  As such, I'm curious as to what your husband's doctors recommendation is - for my informational purposes.  I've done lots of research and it appears that the Oxaliplatin is the culprit in weathering the Folfox treatment, but many of the studies I've found said that 6 infusions could be more than sufficient.  Many patients don't make it for the full 12 anyway - due to side effects - namely neuropathy and potential for permanent damage. 

    Please keep us updated.  We are pulling for him!

     

    J

    Studies?

    Hi, if any of the studies you've found about the 6 infusions are on line, could you please provide a link to one or more of them? I'd be really interested in that information.  Thank you so much!

  • coloCan
    coloCan Member Posts: 1,944 Member
    #10
    LindaK. said:

    Thanks to all and I meant "Folfox" not "Folfax" :-)

    Wow, I guess I have finally found the right place for information and support - thank you all for responding so quickly and sharing your own stories.  I have added several more questions to my list for the doctor for today's appointment.  Yes, he has been getting a steroid before the treatment, which has been cut down.  The Oxaliplatin has also been cut.  Dr. told us he gave him "the full whammy" to start with and also told us most people have adjustments throughout their treatments.  The steroid had also been causing his blood sugars to be extremely high and now he takes insulin also (he is diabetic, but took pills before chemo started).  I will ask about the sugar, if it is possible because of his diabetes.  I'm not sure why they only tested 13 lymph nodes, maybe the surgeons felt that's all they needed at the time.  He also had some neuropathy worse during the first 2 or 3 treatments, so that's another reason they reduced the oxaliplatin. Neuropathy is occasional, but better now.   He has also been taking 2 or 3 Colace/day almost every day since the chemo started in January.  I will take the information from all of you nice people to his doctor today and let you know what the recommendation is.

    Thank you!

    On Folfox duration,latest that i saw was this:

    www.onclive.com/peer-exchange/colorectal-cancer/Managing-Adjuvant-Treatment-in-Colorectal-Cancer-Part-II

  • LindaK.
    LindaK. Member Posts: 506 Member
    #11
    coloCan said:

    On Folfox duration,latest that i saw was this:

    www.onclive.com/peer-exchange/colorectal-cancer/Managing-Adjuvant-Treatment-in-Colorectal-Cancer-Part-II

    Thank you!

    I will show the doctor today.

  • LindaK.
    LindaK. Member Posts: 506 Member
    #12
    Appt. Update

    Just back from the doctor appt.  He scheduled my husband for 5FU (with Leucavorin) next Tuesday and wants to see how he does this week with the constipation.  He wants to add Senekot S to his daily regimen starting today.  No oxaliplatin next week, he may be done with that piece of chemo.  All other counts are fine.  They want him to try Senekot S, Miralax or Milk of Magnesia before any prescription.  They will continue to wait and see on the continuation of treatment.  I felt a little more informed and asked the PA some of the questions since we were waiting about 1 hour for the dr.  I'm glad they are cautious and since he's stage 2, no one is ever sure about the benefit of the Folfox.

    Thanks again to everyone, I will be checking this board daily.

  • db8ne1
    db8ne1 Member Posts: 142 Member
    #13
    Infusions

    Sorry.  I've done so much research but I don't bookmark all of it. I have seen MD reports where the opinion was that less than 12 treatments (if 12 can't be tolerated) are sufficient.  I've also seen blogs where recipients unable to continue FOLFOX stopped the Oxy prior to 12 weeks as suggested by their physicians.  If I come across any again, I'll post them for you.  BTW - I'm having 10 FOLFOX as I had 5FU in conjuntion with radiation prior to surgery, so my onc said 10 should be fine.

  • Coloncancerblows
    Coloncancerblows Member Posts: 296 Member
    #14
    Barnaby said:

    Constipation

    I have had four treatments and have constipation issues with all.  I don't have an obstruction as when it decides to come out it keeps coming for a few hours.  So I don't have any advice but feel for him.

    I have had 6 treatments and

    I have had 6 treatments and the constipation is terrible!  One thing I find very helpful is taking two Senacot's every night.

  • LindaK.
    LindaK. Member Posts: 506 Member
    #15
    LindaK. said:

    Appt. Update

    Just back from the doctor appt.  He scheduled my husband for 5FU (with Leucavorin) next Tuesday and wants to see how he does this week with the constipation.  He wants to add Senekot S to his daily regimen starting today.  No oxaliplatin next week, he may be done with that piece of chemo.  All other counts are fine.  They want him to try Senekot S, Miralax or Milk of Magnesia before any prescription.  They will continue to wait and see on the continuation of treatment.  I felt a little more informed and asked the PA some of the questions since we were waiting about 1 hour for the dr.  I'm glad they are cautious and since he's stage 2, no one is ever sure about the benefit of the Folfox.

    Thanks again to everyone, I will be checking this board daily.

    No more oxaliplatin

    The doctors have decided my husband is done with oxaliplatin.  Only 5FU for 5 more sessions.  He is now taking Senna laxatives, stool softeners and Metamucil to keep things moving.  When we left the oncology center yesterday, he said "I'm feeling funny in the stomach" which I immediately thought was another obstruction.  He has had no nausea from treatments or loss of appetite.  He ate fine yesterday and was passing gas, but no movements. 

    New side effects are extreme joint pain and fatigue.  The fatigue is understandable, but they're not sure about the joint pain.  They said they could give him some steroids (they took the steroids out of his cocktail when they stopped the oxaliplatin) and he said no.  The steroids make his sugar counts really high.  They just recommended ibuprofen or tylenol.

    He had several cocktails last weekend and I'm wondering if that causes the joint pain.  He's ready for this all to be over, but I want him to stick out the 12 treatments to know he did all he could to keep the cancer from spreading.  I wish the subtitute oncologist had never even mentioned to him the study about 6 vs. 12 treatments.  Of course, he wants them to say "Everything is fine, we don't need to see you again"   So, we're 7 down, 5 to go!

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