FOLFOX- how many treatments did you make it through? Lasting symptoms?

2

Comments

  • marqimark
    marqimark Member Posts: 242 Member
    Only eleven of twelve
    I was diagnosed stage 3C.
    Missed a lot of time due to white cell and then platlet counts.
    I didn't make it through all twelve scheduled treatments.
    I got every symtom in the pamplet, except ironicly, hair loss.
    The onc said I was exhibiting symtoms most patients experience after eight rounds after my second treatment.
    The worst for me was the nausea and food tasting foul/wierd.
    I lost 55 lbs starting at 210 to a low of 155 lbs.
    Still suffering from neurapathy almost two years after my last Folfox treatment
    I had a CT at the end of treatment, a second last November and my third will be this coming November.
    CEA tests every three months - 1.1

    Praying there will never be a recurrance.
  • thxmiker
    thxmiker Member Posts: 1,278 Member
    I made it through 10
    I made it through 10 treatments. FolFox put me in the hospital for 16 days. (2 stays x 8 Days) I lost some hearing, eye sight, feeling in my toes, feeling in the last two finger in both hands, and still and cancer reoccur.

    In the same issue, my odds of living past 60 months was 35%. Scary at best! I am an engineer and looked at a lot of possibilities for treatment. FolFox had the best results at the time. (Stage 3B Signet Ring Cell) I am now doing the juicing thing, easing into the Gerson
    Style diet. Consulting tomorrow for surgery, again.

    Bottom Line: Do the treatment that is best for you! If that is not successful, Plan B!

    Best Always, mike

    PS I would think long and hard about alternatives before I did FolFox again.
  • joemetz
    joemetz Member Posts: 493
    24
    i made it through 24 treatments of FolFox6 with Erbitux.
    there were two times that they had to stop the treatments...
    first time was due to the extensive skin rash and infections in my eyes and nose from the Erbitux.
    the second time was with mouth sores from the FolFox6 (not sure which is was from)

    the neuopathy problem is always there... and sounds like it doesn't go away anytime soon.

    i've been finished with FolFox since July 3, 2012.

    on Monday, sept 17th i begin "maintenance chemo treatments" to keep the small amounts of remaining cancer, where they are and to keep them from growing or spreading.

    well, at least Thats the plan.

    I begin Xeloda with Avastin next week.

    nervous!
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    joemetz said:

    24
    i made it through 24 treatments of FolFox6 with Erbitux.
    there were two times that they had to stop the treatments...
    first time was due to the extensive skin rash and infections in my eyes and nose from the Erbitux.
    the second time was with mouth sores from the FolFox6 (not sure which is was from)

    the neuopathy problem is always there... and sounds like it doesn't go away anytime soon.

    i've been finished with FolFox since July 3, 2012.

    on Monday, sept 17th i begin "maintenance chemo treatments" to keep the small amounts of remaining cancer, where they are and to keep them from growing or spreading.

    well, at least Thats the plan.

    I begin Xeloda with Avastin next week.

    nervous!

    Nervous?
    "Say it ain't so, Joe..."

    LOL!

    Hang in there, man!

    -Craig
  • mskautz
    mskautz Member Posts: 30
    Sundanceh said:

    Nervous?
    "Say it ain't so, Joe..."

    LOL!

    Hang in there, man!

    -Craig

    folfox effects
    I had colonrectal stage 3, surgery in March. Dr. has me on 5-fluorouracil think that is folfox and oxaliplatin. Finished 6 with 6 more to go. I had symptoms right from the start,everything everyone else has had. I take the anti-nausea medicine, so damn tired specially when I get the pump off. I also have the first week when I've tried to drink something cold the feeling of glass in my throat. Every time I go in to see the Dr. I try to get him to lower it a little at a time. I hate chemo, can't stand the thought of going back but it's all I have to trust that the Dr's know what they're doing. I had it in only 1 lymph node out of 58 so they say this is preventative chemo. I take it a day at a time and 1 treatment at a time, sometimes I think I can't go 1 more but then I force myself. I just started feeling better after the surgery and then started the chemo which took me right back to feeling like crap. I have to walk with a cane as feel weak all the time. The worst symptom I feel can't really be describe except that it is an all over feeling of being poisoned. Best wishes to you and while i'm at it me too.
  • joemetz
    joemetz Member Posts: 493
    mskautz said:

    folfox effects
    I had colonrectal stage 3, surgery in March. Dr. has me on 5-fluorouracil think that is folfox and oxaliplatin. Finished 6 with 6 more to go. I had symptoms right from the start,everything everyone else has had. I take the anti-nausea medicine, so damn tired specially when I get the pump off. I also have the first week when I've tried to drink something cold the feeling of glass in my throat. Every time I go in to see the Dr. I try to get him to lower it a little at a time. I hate chemo, can't stand the thought of going back but it's all I have to trust that the Dr's know what they're doing. I had it in only 1 lymph node out of 58 so they say this is preventative chemo. I take it a day at a time and 1 treatment at a time, sometimes I think I can't go 1 more but then I force myself. I just started feeling better after the surgery and then started the chemo which took me right back to feeling like crap. I have to walk with a cane as feel weak all the time. The worst symptom I feel can't really be describe except that it is an all over feeling of being poisoned. Best wishes to you and while i'm at it me too.

    yo mskautz!
    Hello MS Kautz

    you sound like you would be a perfect candidate for some 420!
    (some good old fashioned ganja, mary-jane, you know... Weed!

    find some and get that in you!
    you'll relax, you'll feel better and you'll make it through this crap!

    my best

    Joe
  • joemetz
    joemetz Member Posts: 493
    Sundanceh said:

    Nervous?
    "Say it ain't so, Joe..."

    LOL!

    Hang in there, man!

    -Craig

    just a bit nervous
    Hey Craig

    yep... a bit nervous about getting re-started with chemo.

    i feel so damn good that I wonder why i have to go onto maintenance.

    it feels real good to feel good.

    but, honestly... I have a 3 day weekend with my wife and family to really get my head on straight to be ready to attack this stuff.... again.

    cheers my friend.

    Joe
  • Fallenstar
    Fallenstar Member Posts: 1
    6 so far

    i just got rpund 6 of oxaliplatin on 5fu pump now. I got nauseated and got a migraine while at the hospital today. Onc says we might need to postpone next round due to platelets taking an 80 point dive Last round. Have had basically every imaginable side effect, even the really abnormal ones so an extra week or two off might be really nice. Seems doubtful at this point that I will finish all 12 rounds. Halfway scans scheduled for next week. Fingers crossed!  (33yo stage 3c lynch syndrome colon cancer)

  • lizard44
    lizard44 Member Posts: 409 Member

    6 so far

    i just got rpund 6 of oxaliplatin on 5fu pump now. I got nauseated and got a migraine while at the hospital today. Onc says we might need to postpone next round due to platelets taking an 80 point dive Last round. Have had basically every imaginable side effect, even the really abnormal ones so an extra week or two off might be really nice. Seems doubtful at this point that I will finish all 12 rounds. Halfway scans scheduled for next week. Fingers crossed!  (33yo stage 3c lynch syndrome colon cancer)

    Hi, Fallenstar

    Welcome  to the board.  We're happy  to have you here, but sorry you have to be here and  I'm sorry you are having some nasty  problems with  the oxaliplatin and 5-fu.  The thread you  have posted to is an old one, begun several years ago. Several of the contributors are no longer with us.  Maybe you could start a new thread and get more input. People here are very helpful and   generous in sharing information. . . and  virtual hugs, when needed Smile

     

    Grace

     

  • Trubrit
    Trubrit Member Posts: 5,796 Member

    6 so far

    i just got rpund 6 of oxaliplatin on 5fu pump now. I got nauseated and got a migraine while at the hospital today. Onc says we might need to postpone next round due to platelets taking an 80 point dive Last round. Have had basically every imaginable side effect, even the really abnormal ones so an extra week or two off might be really nice. Seems doubtful at this point that I will finish all 12 rounds. Halfway scans scheduled for next week. Fingers crossed!  (33yo stage 3c lynch syndrome colon cancer)

    Welcome to the forum

    Sorry you have this dreaded disease, and such a young age. 

    As Lizzard mentioned, this is a really old post, and several of our friends have now passed on (oh, just look at their sweet names. So sad!). We would love to have you post a new thread and introduce yourself, and let us welcome you. 

    Here is the link http://csn.cancer.org/forum/128  Just see on the right where it says under Colorectal Cancer - Post new Forum topic. 

    Again, welcome. 

    Sue - Trubrit

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    12

    I was able to do all 12 but I did have a tough time with the cold weather. I also had some mild to moderate neuropathy but it didn't effect walking or anything. I still have very mild numbness in my hands and feet but it hasn't stopped me from playing guitar.

  • Stage 4 colon mets to liver. 

    Stage 4 colon mets to liver.  Just had my 14th FolFox 5 treatment with take-home pump.  Colon mass is nearly gone and liver masses are about half gone.  Numb fingers down to the palms and numb toes, slightly off balance when walking ,  itchy head scalp and skin--- must shower every day,  taste for food is off a bit.   Doc pulled me off of Oxiplammallion (sp)  at treatment number 11 due to side effects  --  all other chemo drugs remain.  Next Ct Scan is early March.

     

    Just starting on Alkaline Water (1 qt per day)  and CBD Hemp Oil extract with Docs blessing and is compatitble with Folfox 5 drugs .  We shall see.  Lots of folks have good luck with these two remedies.

     

    Stay close to God thru it all.

  • NEDbound
    NEDbound Member Posts: 54
    9 of 12 so far

    Hello!

    I just finished my 9 th treatment of 12.  I have low white blood cell count and platelet count.  I may have to wait a week between treatments if they go any lower due to the treatment I just had.  Symptoms are neuropathy - I have numbness and tingling in my hands and feet, but no pain.  I use my hands at work so I am concerned but I'd rather change jobs than die....

    I have severe fatigue and some nausea.  I take Emend for the nausea. It is expensive but worth it.  I have numbness in my mouth and my lips as well.  That's one symptom I don't hear many others complain of.  Also have pretty bad hair loss, really bad taste in my mouth, it hurts to take first bite and to cry (like salt on an open wound), and I have altered bowel habits and bad gas (TMI sorry). 

    I have 3c (T4aN2b), basically one cell layer away from stage 4 so I want all 12 treatments.  I had reduced oxaliplatin dose for the last two treatments.  I didn't notice any relief of symptoms with the reduction.  I will take all 12 treatments.  If neuropathy suddenly worsens a lot, I'll take 5FU without the oxaliplatin. 

    Thankfully I have a very supportive husband.  I have twin 3 yo girls who need lots of attention.  I disconnect on Sat, so Sat and Sun are my bad days.  When I get too tired, I just disappear to my room.  My husband takes over wonderfully.  It's kinda sad though; my girls are becoming accustomed to hearing "Mommy doesn't feel good."  They know to look for my pump before getting on my lap.  Today I mentioned to my husband something about it being "monday after chemo."  One of my girls said, "what's chemo, mommy?"  Something a parent should never have to hear their child say.  Ugh.

    Summer

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    NEDbound said:

    9 of 12 so far

    Hello!

    I just finished my 9 th treatment of 12.  I have low white blood cell count and platelet count.  I may have to wait a week between treatments if they go any lower due to the treatment I just had.  Symptoms are neuropathy - I have numbness and tingling in my hands and feet, but no pain.  I use my hands at work so I am concerned but I'd rather change jobs than die....

    I have severe fatigue and some nausea.  I take Emend for the nausea. It is expensive but worth it.  I have numbness in my mouth and my lips as well.  That's one symptom I don't hear many others complain of.  Also have pretty bad hair loss, really bad taste in my mouth, it hurts to take first bite and to cry (like salt on an open wound), and I have altered bowel habits and bad gas (TMI sorry). 

    I have 3c (T4aN2b), basically one cell layer away from stage 4 so I want all 12 treatments.  I had reduced oxaliplatin dose for the last two treatments.  I didn't notice any relief of symptoms with the reduction.  I will take all 12 treatments.  If neuropathy suddenly worsens a lot, I'll take 5FU without the oxaliplatin. 

    Thankfully I have a very supportive husband.  I have twin 3 yo girls who need lots of attention.  I disconnect on Sat, so Sat and Sun are my bad days.  When I get too tired, I just disappear to my room.  My husband takes over wonderfully.  It's kinda sad though; my girls are becoming accustomed to hearing "Mommy doesn't feel good."  They know to look for my pump before getting on my lap.  Today I mentioned to my husband something about it being "monday after chemo."  One of my girls said, "what's chemo, mommy?"  Something a parent should never have to hear their child say.  Ugh.

    Summer

    TMI

    There's no such thing a TMI on this forum. You've gotta know, we talk about everything. Part of the reason some of us are as far along as we are (as in Stage IV) is because of our culutral reluctance to talk about our personal bowel habbits or hemmeroids or rectal pain, or......  well, you get the idea. 

    Knowledge is power, so we share it all. 

    Don't push your body too far, especially with the neuropathy. I'm glad your Onc is cutting it back. 

    Sue - Trubrit

  • traci43
    traci43 Member Posts: 773 Member
    It's different for everyone

    Stage IV.  First time post surgery, I did 12 rounds FOLFOX plus Avastin.  First recurrance, I did 8 round pre-surgery FOLFOX and 6 round post-surgery FOLFOX plus Avastin.  Stood at 6 because I got a high fever during infusion and my onc said no more.  Second recurrance, switched to XELIRI plus Avastin did 12 rounds and stopped because the diarreha was so bad.  Third recurrance, only 6 rounds XELIRI plus Avastin then surgery, no post surgery chemo.  Currently 18 months post surgery and still cancer free.  I think there's more but I've forgotten exactly what happened when.  :-)  Best as I can tell I've had 56 rounds overall.

    I never vomited with FOLFOX but always with XELIRI.  I felt like mucus was clogging my throat and would try to clear it and end up throwing up.  After that I was fine.  Zofran was my friend and kept me from puking.  I never felt good while on the 5-FU pump, but never really puked.

  • sigma9r
    sigma9r Member Posts: 9
    abrub said:

    I quit after 7 treatments
    But I had been told that they didn't know nor would they ever know if the Folfox would benefit me. If/when my cancer comes back, they will not be able to say it was delayed by the Folox; if it never comes back they won't be able to attribute that to the Folfox either. My onc was very clear about the uncertainty of efficacy of Folfox for my cancer (metastatic mucinous adenocarcinoma of the appendix; Stage IV, but no lymph nodes involved.)

    Side effects were extreme for me (neuropathy, hand-foot syndrome, first bite syndrome, and a blindingly painful anal fissure that I was told would not heal until after I was done with chemo.) I decided that the known problems were not worth the unknown benefit, and chose to discontinue.

    4 years later, I still have some residual neuropathy, tho it only has minimal impact on my life.

    However, Folfox is known to be effective against colon cancer. If my cancer had been different, I might have struggled through one or 2 more rounds.

    Ditto

    6 rounds this year, 5 last year.  Neuropathy in the fingertips, it feels like I have something on my fingers but I can't feel the strings on my guitar, can't deal cards, etc.  Folfox will only delay my colon cancer.  Last year I had mets in the liver.  Wonder what it'll be this year!

  • NEDbound
    NEDbound Member Posts: 54
    Folfox

    I have stage 3c dx at 39yo.  I am currently doing treatment 10 of modified Folfox 6 - got my fanny pack on as I type.... 

    The first 7 cycles, I did full dose of both oxaliplatin and 5fu.  Treatments 8-10 were with reduced dose oxaliplatin (65mg/m2 instead of 85mg/m2).  I reduced it due to increasing neuropathy.  Treatments 11 and 12 are going to be 5Fu only.  I have terrible fatigue, nausea, eye pain, first bite pain, cramps in my hands and feet - cold induced, neuropathy on my hands and feet (finger tips and toes really bad now), and diarrhea.  My WBC count and platelet count are low but not low enough to stop or delay chemo yet.  I have daily and constant nose bleeds, bad bruising and bleeding gums from the platelets being low.  Chemo is awful and I hate it.  I don't know how the stage 4 folks take so much chemo. I guess you just do it.  And I guess I will to if need be.

  • sashinka
    sashinka Member Posts: 13
    Colorectal cancer w/ liver metasteses

    Where do 

    i receive replies. ?

    After folfox i have clear liquid with some blood from the anus. Anyone else. ? Onc at Sloan Kett. is not sure why. 

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    edited August 2016 #40
    sashinka said:

    Colorectal cancer w/ liver metasteses

    Where do 

    i receive replies. ?

    After folfox i have clear liquid with some blood from the anus. Anyone else. ? Onc at Sloan Kett. is not sure why. 

    My suggestion

    is for you to open a new thread here http://csn.cancer.org/forum/128

    Just click on Add new Forum Topic (below Colorectal Cancer and above Topic and the top thread) and ask your question. 

    This is an old thread, with several who no longer post because they have passed on. 

    SUE

  • sashinka
    sashinka Member Posts: 13
    Trubrit said:

    My suggestion

    is for you to open a new thread here http://csn.cancer.org/forum/128

    Just click on Add new Forum Topic (below Colorectal Cancer and above Topic and the top thread) and ask your question. 

    This is an old thread, with several who no longer post because they have passed on. 

    SUE

    Colorectal cancer w/ liver metasteses

    Maddening.... i cant get on line...

    I seem to be online.   Thanks. 

    Any responses to my concerns? 

    I have no other reaction to Folfox other than some fatigue and the mucous from the anus.