Folfiri and crappy feeling stomach

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Bellen
Bellen Member Posts: 281 Member

Would anyone who had folfiri chemo please comment on how they felt afterwards.  The day of chemo, I feel very "off" - possibly the 4 steroid pills (told to control nausea and get no sleep that first night) and the anti-nausea pills - and then the avastin and the chemo cocktail.  My eyes are very affected (think it is the steroids).  Have the 5Fu on for 2 days, so really chemo is every 12 days.  I also think the irinotecan makes my stomach feel awful.  I only get about 3 days when I feel pretty good.  And then I'm back at it.  Also, have neupogen shots for 5 days after 5Fu off for low immune system - they cause weird, painful bone pain and slight headache.  Sometimes, I have a good day and then the next I am tired - go through a lot of stomach issues - C and D.  It has been over a week, and I am dealing with every time I eat, I am in the bathroom, think I have a fissure to heal and had open, bleeding skin, taking 2-3 baths a day - Man, sometimes this gets me down.  Try to get out when I feel good, but can't plan anything feeling so up and down.  Hate to b----- but just wondering, as some are saying that their side effects are quite minimal, and wondering if I am one who seems to have a slew of stuff.  Anything I can do to feel better while recouping?  Thanks all. I know many have had folfox and you suffer with other effects like cold and neuropathy.  Wishing everyone the best.  

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  • Joan M
    Joan M Member Posts: 409 Member
    edited August 2017 #2
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    Thanks for sharing your problems on folfiri

    How long have you been on that chemo combination and how long to they expect you to stay on it if if makes you so ill?

    My doctor wants me to go back on the folfox, but I hate the neuropathy and electric shock sensations from the oxi and don't want to lose my hair again.  I asked what else I could take and he said the folfiri.   Did you lose your hair from these meds?

    After reading about your problems, I am going to search for other options. 

    It's important for others to know the side effects of these treatments.  

    Hope things get better for you. 

    Joan

  • Woodytele
    Woodytele Member Posts: 163
    edited August 2017 #3
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    Crappy stomach

    the chemo does a number in your system.  I too was going to the bathroom A Lot! had what I thought was a fissure too, your butt can only handle so much, so I suggested some miralax to my Dr. to make the bathroom easier, and they agreed.  I took lots of baths, took the miralax, and it eventually got better.  They lowered the dose on my Irinatecan, and the 5-FU, both of these were causing major bathroom issues for me. 

  • Canadian Sandy
    Canadian Sandy Member Posts: 784 Member
    edited August 2017 #4
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    I reacted very badly to the

    I reacted very badly to the irinotecan. Spent 3 weeks in the cance clinic getting my electrolytes back. One treatment did this. I have now been ned for a year so it must have helped. In that time I learned that quality of life is far more important than quantity. Hope it helps you. My prayers also help.

  • Bellen
    Bellen Member Posts: 281 Member
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    Folfiri and stomach issues

    Hello all - Thank you for your well wishes and suggestions.  I have some pre-existing issues that compound my problems.  I have a small bowel stricture from pelvic radiation that I had yrs ago, follow a low residue diet to help reduce blockages (little fiber and have taken miralax for last 6 yrs because I mostly had chronic constipation).  So had issues prior to my diagnosis of CRC with several Liver mets last summer - inoperable.  My Onco says this all complicates my ongoing issues with the chemo and constipation/diarrhea issues.  I think that irinotecan causes a lot of the stomach issues.  I really like my Onco and my dietician, and they have tried to help me with a protocol with C and D, but unfortunately, my system doesn't have a pattern, so I end up using the meds according to how my body reacts at the time, trying things, looking up on the internet.  I was hoping that someone might have a "miracle cure - lol" for fissures because they had suffered from this.  I am working with a bit of immodium (worry about blockages) lots of baths, witch hazel, etc. but just wondering about something for internal issues - using anusol HC.  Will definitely talk to my Onco next week about all of this.

    I have had 22 chemo treatments - taken a one-chemo break, as well as extended my chemo about 3 times by extra week to give me 3 wks from last chemo. That extra week made a big difference, except for last one when I ended up with fissure, bleeding external skin, etc.  I had been away that wk and didn't have chance to do all the baths, etc that I think would have helped healing.  By the 3rd wk, I usually feel pretty good, and told my husband I feel "normal" (whatever that means - lol).  

    Joan, you asked about hair loss.  I did lose most of my hair - I had fairly long hair, it fell out starting around 4th chemo, looked terrible as it fell out.  And then it stopped at a very short, spikey, pixie (that doesn't look bad, but so different from my look - that I wear a long, similar hair-coloured wig that I bought prior to losing my hair when I go out).  It is a biolon wig - very nice, clear scalp, super natural.  So I am not bald, but don't believe it will grow longer, as I will be staying on chemo.  My Onco says I will stay on this chemo - usually the tumours will eventually mutate, and then will have to go on different protocol - I wonder if he thinks I can stay on folfiri longer than folfox, as so many of you have had neuropathy and cold issues.  I have CT scans after 6 treatments.  If tumours are stable or shrink in liver, believe he will want me to stay on folfiri - I will look into more 3 wk extensions to have some better days. I know that the white blood cell shots really bother me (neupogen - have 5 shots in a row), but early on had chemo cancelled due to low WBC's - so by the time I'm finished those it has been a full week - not much time to recoup and have very many good days in between.  Seems like a combination of everything "ravages" my system and causes me to have so much up and down.  Wishing everyone well.  Prayers to all.

  • Joan M
    Joan M Member Posts: 409 Member
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    I wonder if 8 rounds of folfox would be better for me?

    It's hard to know what to do at this point. If I lose my hair either way, maybe 8 rounds of oxaliplatin would be easier to tolerate.

    I don't think I could handle a lifetime of folfiri.  I thought the xeloda was working except for the one lung tumor.  Just found out this month that my oncologist is worried about other possible tumors.  It's so frustrating. 

    Hope things get better for you Bellen!

    Joan

     

  • lizard44
    lizard44 Member Posts: 409 Member
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    Bellen, Wow!

    You really have had a  hard time - I hope  everything settles into a new normal that lets you enjoy a lot of better days. I  was never on the FOLFIRI; had eight rounds of FOLFOX and  just had my 30th infusion of  Erbitux and Irinotecan this week. It ususally takes me a few days to recover and  get my energy back after a treatment, sometimes it takes almost a week before I'm feeling  close to normal,  and can get things done without stopping to rest every 20 minutes or so. I don't know whether that's just the cumulative effect of so much chemo or because I'm getting older or what. I began to lose hair  after the sixth Irinotecan treatment and finally decided to  have most of it shaved off except for enough to spike and dye blue on top just for the heck of it.  It has  grown back now but  is completley different-   some of it is  straight, some wavy, some curly and  some can best be described as  resembling a Brillo pad. I have a LOT of bad hair days lately, and on those days  I just   put on a fedora. I bought a lovely wig but   just don't like the feel of it on my head so don't wear it.  I've been really fortunate in avoiding the nausea and  stomach problems, although with the radiation colitis, and the chemo I play a constant game of trying to balance  my bowel activities,  swapping between  prunes and Imodium depending on whether  it's a C or A D day.

    I hope you and your doctors find a way to resolve your stomach  issues and that you have more ups than downs from now on.

    Grace/lizard44

  • Bellen
    Bellen Member Posts: 281 Member
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    Erbitux - cetuximab. Positive results

    Hello Grace and others - I see that erbitux is also cetuximab (wish they would stick to "one" name for these drugs - confusing to me and constantly looking up).  A support friend who calls me has been fighting the same cancer as me (CRC with liver mets) for about 5 yrs now - has had a few different chemo cocktails and has been able to have some surgeries, procedures - even though was initially told inoperable.  He is such an inspiration and very knowledgeable.  Says he has no liver tumours right now, but has a few lung tumours.  He has started on cetuximab-erbitux, as he sees in the research he has done, that there have been some positive results with cetuximab-erbitux.  He has had about 5 treatments now and I will let you know his results.  

    Grace, you have had a lot of treatments. Have you found positive results with it?  Are they every 2 wks?  And no 5Fu?  Also, did you find any issues with acne, rash - are you using anything to prevent this reaction? My friend said had a first time bad reaction that he got cleared up and now takes an antibiotic to prevent and help.  He talked very positively about the research he has done on cetuximab.  

    I do wonder what the difference is between vectibix (which I think Jan is having) and erbitux.  They both seem to have similar side effects re: acne, rash, etc.  But I wonder if they target differently.  I was told cetuximab inhibits cancer from dividing. 

    The reason I am so interested in any and all of these other treatments is, because when you are told that you have inoperable cancer that is not curable (my multiple liver tumours are very dispersed) I want to learn about future options - effectiveness, and medications or creams, etc to minimize side effects.  Joan, has your Oncologist mentioned erbitux or vectibix.   In terms of my folfiri chemo, I think that my pre-existing bowels issues, the steroids at first, stomach issues with irinotecan, and the bone and muscular pain from the white blood cell shots (those who have WBC shots may know of these side effects) all contribute to my feeling pretty crappy for most of the days prior to going back at it as this is so ongoing.  Have had discussions about more breaks here and there - and will also see the CT scans to help with options and plan some chemo breaks.  I can "live" with these side effects if they are helping.  Amazingly, I am always told I look good when I arrive at the cancer center to go at it again - lol.   I thank you all for sharing all of this important info and support.  It means a lot to me and helps to keep us "keeping on" - lol.  

  • lizard44
    lizard44 Member Posts: 409 Member
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    Erbitux Rash - Bellen

    Bellen-  I do get the treatments every two weeks. I did get the acne-like rash  when I first began on the Erbitux.  The onc prescribed  Clindamycin gel and the acne  stuff cleared up, although I did still get    a red rash for a while.  I still get   bright red skin on my face the day after treatment, probably  from the erbitux and the steroid combined, but it doesn't itch. My skin has been extremely dry since I started the irinotecan/Erbotux combo and  there are some strange things happening to my toenails, but for the most part I've tolerated it well.  You asked about 5-FU- I  did have the 5-FU  pump   while on the  8 FOLFOX treatments and also  had the pump 24/5  for most of the 28 radiation treatments.   The onc took me off the  5-FU for a few days when I  developed mouth sores, but once they cleared up I went back on with no problems.  The Erbitux has done a good job of keeping everything at bay so far and I haven't  developed any new lesions anywhere since having the liver mets ablated last August.

    You mentioned the bone pain with the neupogen shots.  Have you tried tkaing Tylenol or Claritin about an hour before you get the shots?  The Tylenol  did  do a good job of  preventing the bone pain.

    Grace/lizard44

  • Peep
    Peep Member Posts: 1
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    Weakness before chemo

    My husband -79yo- was just diagnosed with Stage1V signet ring cell cecum cancer with peritoneum involvement ( not sure how the signet ring thing fits in) plus Stage 111 lung cancer (squamous) unrelated to the colon cancer. He starts Folfox and avastin next week. He complains about weakness, fatigue, appetite and sleep problems now. His labs don't show any obvious cause. I dread the chemo effects since he already has them! How does the cancer itself cause so much weakness?

     

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
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    C

     

    I don't have any direct Folfiri experience.   I have known people who improved their Folfiri QoL enough to stay on it more years, healthier and happier with integrative medicine approaches.  A lot of cancer/chemo damage and nutritional depletion can be ameliorated with diet and supplments.  Oral glutamine for Folfiri's gastro problems has actually crossed over from CAM into recognized oncology.

    One member here, Luvinlife2, had a Canadian integrative clinic in BC that would add IV vitamin C and K3 to her Folfiri infusion stack.  She had decided to quit her misery with Folfiri until she found much relief with the added IV C and K3.  She then continued folfiri another 2-3 years.  I know if I suffered that much I'd be looking for more answers, calling around and fishing multiple talent pools.  Also cancer and chemo patients tend to depleted on a number of nutrients.

    I've known people who able to totally replace their steriod treatment for other problems with IV vitamin C with better results and of course, vitamin C ameliorates diabetes while steroids aggravate it. 

    Also I would get my CA19-9 compared against the Kras wild status for erbitux.  Serum CA19-9 reflects all the cancer sites, where a biopsy is a point determination and may miss other populations of Kras mutant cells.   

  • Bellen
    Bellen Member Posts: 281 Member
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    Kras wild - Kras Mutated

    Hello - I believe the tumour is often tested for Kras wild or Kras mutated, and that positive or negative response to chemo can be affected by whether the tumour is Kras wild or Kras mutated.  I wish I knew more about this and IV Vitamin C - also oral glutamine to help with the gastro problems I experience.  Will do some research.  I just find there is so much to learn - not feeling so well with the side effects, and the chemo that seems to be so frequent (really every 12 days), due to the white blood cell shots beinging me up to one full week, and then I only have the next week to continue to deal with the up and down of C and D, mouth sores, and other side effects.  I have a dietician, who has been a wonderful help to maintain my weight, but he is very "careful" about what he endorses, as he doesn't want his advice to conflict with my Onco or Cancer Center protocol.  Also looking into specific probiotic to help stomach issues.  So much to learn, and I am a bit of a "complicated" patient, due to my pre-existing small intestinal stricture (area of scarring) which precludes me from having certain foods (follow low residue diet), products, medications - anything that bulks.  I wonder if the folfiri with irinotecan can be tolerated longer than folfox with oxyplatin because the stomach issues are more tolerable than the nerve and cold issues caused by oxyplatin.  I have been on folfiri + avastin since last Sept 30th - think I am around 20 treatments.  I have metastisis with multiple liver tumours which are very dispersed, so am told inoperable.  Believe me though, when I get "good" days, I get out and enjoy.  Best to all.  

  • EissetB
    EissetB Member Posts: 133
    edited September 2017 #13
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    Hi, Bellen!!

    My onc and nurse RX me Ondansetron 8mg tablets. Maybe you have to ask your onc about this med for stomach upset and nauseated. This helps me out of my pain. Hope this helps. 

  • Bellen
    Bellen Member Posts: 281 Member
    edited September 2017 #14
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    Ondansetron

    I take ondansetron for 1st and 2nd day of chemo For nausea - also have "as needed nausea pills".  I am told it causes constipation, so I am very careful with it.  It is not that I always feel nauseous.  I call it "crappy" - I go from first being constipated, then everything running through me.  I believe this is what has caused a painful fissure that I am dealing with and trying to heal.  Apparently, very hard to heal with ongoing chemo.  I have to take great care with what I eat, laxatives, anti-diarrhea, etc because I get intestinal blockages (extremely painful spasms that will last for hrs if I get a blockage).  I have taken miralax daily for past 6 yrs, as I had chronic constipation until I started chemo.  This is why I say I have more abdominal/stomach issues than most, more side effects - the chemo just really amplifies the problems I had prior to starting chemo. 

  • Bellen
    Bellen Member Posts: 281 Member
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    Crappy feeling stomach

    Grace - It takes me a little longer than a week to recover - I think because of the added "5 days of neupogen shots" (start day after chemo bottle off) which I need to have to keep my white blood cells at a level where I don't have my chemo cancelled.  I don't get any sleep the night of chemo and my stomach takes quite a few days to feel okay.  Wish this fissure would heal.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    edited September 2017 #16
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    Steroids

    The steroids were given to me for two days in a row and it kept me up for 3-4 nights.  I'd be on the boards at 3 a.m. posting about how wide awake I'd be and believe it or not there were other people posting at the same time.  Mine was folfox but still had the steroid but in IV.  Going through the C & D is also common but make sure that you don't strain too much as it can cause issues as well.  Get something for the upset tummy - the doctor can give you a prescription.  Also the nupegon is not very pleasant.  My husband injected me with it 5 days in a row as well and hated that.  My whole body would ache.  You are not alone.  Hope that you get through treatment as best as possible but let your doctor know your fatigue and questions, concerns.  They can prescribe something for most of it.  Keep coming on the board and let us know how you are doing.

    Kim

  • RichieTheK
    RichieTheK Member Posts: 13 Member
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    My experience with FOLFIRI

    I've had over thirty rounds of FOLFIRI and have been fortunate when it comes to side effects. I read that about two-thirds of the people who get irinotecan get severe diarrhea. I don't get that. In fact, the 24 mg of ondansetron that I get before each infusion constipates me! The ondansetron (Zofran) is necessary to qwell nausea. I do get somewhat nauseous for about three days after the infusion, but it is readily controlled with ondansetron and prochlorperazine (Compazine). I did lose a lot of my hair though.

    I have a genetic mutation that allows me to tolerate a higher dose of irinotecan than is normally given, so I feel really fortunate in not having severe side effects.

    Rich

  • Bellen
    Bellen Member Posts: 281 Member
    edited October 2017 #18
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    Folfiri and crappy stomach

    Hello all - I talked to my Oncologist about how crappy my stomach feels throughout the 2 wks.  I will have my 28th treatment of avastin + folfiri next week.  Had chemo cancelled due to low white blood cells.  Had my 4th blood transfusion.  We talked about having more breaks, as I have been on this regimen for a year now, and I am having more difficulty recovering by 2 wks.  So, talking about same chemo (as my scans have been showing reduction in larger liver tumours and some small ones are not showing - although he says they are probably still there, but small enough not being picked up by scan).  I will continue on same chemo, but with more additional 1-wk breaks and possibly a month or two break, with scan done to check tumour status.  I am looking forward to extra wk, as that one extra week is when I feel the best.  My Onco can't think of anything else that would help my stomach, as it is not really nausea - but a very crappy feeling in my stomach - probably result of constant C, then D throughout most of the time.  Was hoping some med (other than nausea med) or food/drink might help.  I'm sure a nice glass of red wine would do the trick - lol.  

  • Trubrit
    Trubrit Member Posts: 5,800 Member
    edited October 2017 #19
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    Hello

    I am glad that your Onc is on board with more breaks. And I am happy to hear that you have some shrinkage in the tumours. Every little bit of good news is something to run with. 

    I hope the bloods improve.  I had one transfusion, that was enough. It did make me feel a little better, at least for a short while. 

    I wish you luck finding something that calms your stomach. Keep looking. Keep trying things. Do you use a hot water bottle? I've always been a big fan of hot water bottles. A cure all, so to speak. OK, not cure. I used mine throughout chemo for one side effect or another. It was probably more in my head that it worked, but it was a comfort. 

    Blessings!

    Tru

  • Bellen
    Bellen Member Posts: 281 Member
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    Hit water bottle

    Thanks for the reminder about the hot water bottle - yes, I think it may help.  And also with the mild spasms associated with the beginning of an intestinal blockage - calms the stomach.  Will use more often.