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Folfiri: Hospitalized and losing hair after 1 treatment

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

I had my first infusion of Folfiri on January 26, 2018.  I felt ill all weekend.  Monday I started vomiting and running to bathroom with diarhea.  Took Zofran and Imodium. Seemed to help.  I continued takig the Zofran every 8 hours and took one Imodium tablet per day until Thursday.  Then got constipated for 3 days.

Satruday, February 3rd  woke up with gallbladder pain and felt ill.   Took a nap and woke up with a fever at 4pm.  Went to ER and was admitted.  CT showed inflammation in basically my whole abdomin, including gallbladder and colon.  Misdiagnosed with COLITIS and treated with Flagyl and Zosyn by IV.  I refused the Flagyl after hearing my prelimnary test results were negative.  

Sunday started having severe diarhea and went 14 times between 5pm and 2am. Became really bloody by midnight.  The hospital doctor refused to call the oncology insisting my illness had nothing to do with cancer or chemo but was caused by bacteria.  I asked for a different doctor. 

Monday, came doctor came to see me and more results came back negative, and so I refused the Zosyn.  The doctor insisted I had c-diff made everyone gown up to come into my room, and didn't order the test for it untl 1:30pm on Monday. She also refused to call oncology after numerous requests. I asked again for a different doctor. I had called oncology myself and they said the doctor wanted to see me but couldn't without the order from attending physician.

Tuesday  I got a new doctor, negative results on the c-diff test and also got to see the oncologist at 6pm.  He asked what brought me in, I told him I had a gallbladder attack and was running a fever.  He thought as I had originally that the fever was from the Folfiri and the gallbladder pain because my cystic duct is blocked.  He used to be a surgeon and believes as I do that I need to have my gallbladder removed.  Had a failed surgery in November 2017 due to too much scar tissue around the gallbladder.  He is referring me to a surgical specialist at Mayo.  He also told me to avoid the hospital as much as posssible and call nurse line first.  He discharged me from hospital. It was really nice to get home.

Wednesday night I had a much higher fever that came on suddenly: fluctuated between 99.7 to 102+.  Took Tylenol and called nurse line.  She advised me to go to ER.  I asked her to call oncology.  Same doctor that had just seen me Tuesday  night was on call and told me to alternate Ibuprofen and tylenol to manage fever and call for appointment in the morning. 

Thursday I woke up with Fever: again differed between thermometers low was 100.4 hhigh was 102. Felt tired and weak, so took tylenol and went back to bed.

Took a bath, washed my hair and my hair was just coming out in handfuls.  This is a sudden change in hair loss.  It has been pretty normal until today.  

I'm waiting for a call back to see the doctor.  Was supposed to get Folfiri again tomorrow, but dont really want it.  I'd like something less toxic.  Not sure what else is out there but hope to find out today.   See the oncologist at 2:30.

Gonna rest and eat something and get there early. 

I am on a waitlist for Immunotherapy trial at MD Anderson. 

Praying for different chemo and to feel better

Joan  

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

That was a nightmare.

I read about this stuff in the chemoteach - all the conditions to call the doctor 7x24, or to go straight to the hospital.

It sounds like a fairly bad reaction to the chemo and I have seen these from time to time on the forums.

I hope that your doctors can figure out a better solution.

LindaK.
Posts: 496
Joined: Apr 2013

Oh, Joan, I am so sorry for all your suffering and the bad medical treatment you encountered.  I'm glad you stuck up for yourself, I'm always hoping those inept doctors can learn something from the patients.  I'm surprised your oncologist wouldn't come right away.  I would agree with you that all your issues (and they are severe) are from the chemo and your system being so ravaged by it.  We don't know how bad it can get until it gets bad.  You've had a heck of a first few weeks. I doubt they would do another treatment tomorrow.  My husband lost most of his hair on Folfiri but it is different for men.  I hope you get some good care and options today at your appointment, be sure to update us if you can. 

Linda

Trubrit's picture
Trubrit
Posts: 5221
Joined: Jan 2013

I am so sorry that you have suffered so, and especially knowing that you could have got the right help immedietely.  What are Doctor's thinking? Why does YOUR Oncologist have to have a order from attending physician? Can he/she not see you whenever? 

Rest. Listen to some soothing music. Diffuse oils. Do whatever it takes to calm the spirit. You don't need the added stress. 

I am sorry about your hair. It is devestating when it falls out. I know! 

Thinking of you.

Tru

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Oh geez, that's horrible! If you have an adverse reaction like that is there nothing they can do to make it not so bad? I had an extreme reaction to the chemo I now take exactly a year ago. I'd been having trouble with getting hives for no reason and tried the chemo while this was still going on. I totally overreacted to the chemo because of it and it was terrible. Then, five months later I tried the same chemo and did not get the same reaction and it worked very well.

I wonder if you already had something going on that made this happen. I hope your hair just thins out and doesn't fall out completely. And I hope they can find something to reduce the reaction. I think there are certain chemos that some people just can't take. It's like they're allergic to it or something.

Take care,

Jan

PamRav's picture
PamRav
Posts: 282
Joined: Jan 2017

To hear you’ve had such a miserable time of it.  Sounds like you did one great job of advocating for yourSelf.  You would have thought the first thing any of them would have done was to call your oncologist .

hope you’re able to find a chemo that works for you without causing so much distress.  Keep us posted and take good care of yourself. 

Pam

Ruthmomto4's picture
Ruthmomto4
Posts: 663
Joined: May 2013

my husband had the exact same reaction from the Irinotecan the iri part of the folfiri. He had horrible pain, crazy diarrhea, vomiting, the only thing he did not have was the fever.  He was told he had pancreatitis but no one would ever say it was the chemo med. he had it once and never had it again. He had Folfox + avastin and never had that issue sgain. He is currently in the process of treatment 10. He no longer has his gallbladder though. I hope you never have that happen again and feel better soon. 

Canadian Sandy's picture
Canadian Sandy
Posts: 653
Joined: Jul 2016

Sorry to hear of all the problems with irinotecan. I also had problems with it. Severe diarrhea low electrolytes nausea. I spent the month of August 2016 in cancer hospital. The scary part is they didn’t know what to do or why I reacted like that. I was not allergic. Lost all of my hair also but it’s now grown back and much thicker than before. At 76 years of age it even grew back in brown.....I have never turned gray.

i have been Ned since that treatment. Prayers being sent.

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

Mine was really grey and brittle when it came back in until after the chemo was discontinued end of August due to gallbladder problems.

 

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

Wow Joan...so sorry you've been through such hell after the folfiri.

Your experience sounds like typical hospital nonsense. Difficult doctors writing crazy orders and the nonstop misery. I worked in hospitals over 15 years and it all seems totally unacceptable that you would experience all that but I KNOW it happens. I wish that I had had more oncology experience to know what to sort of expect if I have to ever go in.

I hope that you do not take another dose, it sounds like it was very toxic to your system. Do you have another option? The diarrhea is what I feared about taking it but at this point I don't think my Doctor is planning any chemo for me. I am supposed to be consulting the radiologist again to discuss my MRI from last week and discuss the hopefully upcoming Y90 treatment to my liver.

Anyways, again I will be thinking of you and pray that things get better. No one should have to suffer that way.

Love

Karen

Bellen
Posts: 281
Joined: Aug 2016

Joan - I had about 25 treatments of folfiri and avastin.  I did have quite a few side effects, especially stomach issues, although I attributed a lot of it to a small bowel stricture that I have dealt with for several yrs. i guess others have had some serious reactions to the irinotecan, as you have.  So sorry you are going through this.  Is there a possibility that the dosage was way too high?  I know mine was reduced at first, and then again.  It seemed to be working according to the CT scans - even with the liver tumours, but then in November I was diagnosed with this skull tumour, so I will not be having anymore folfiri.  I'm almost at a point, with all the side effects of this skull tumour, and the biopsy of it (Bell's Palsy, ear pressure, headache, off balance, housebound) that I am thinking I have had enough. i know my Onco mentioned panitumumab (may be similar to what Jan is having) but with the further metastasis that I have had (lungs, a lymph node) at a loss about what I could have - sure not in shape to have any chemo right now - have not had chemo for over 3 mos.  Please take care - I think of you often and send prayers that you will have an option that will not have such a reaction.  

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

I didn't have chemo yesterday and won't get any chemo until my gallbadder issues have been resolved.   

I will refuse the Folfiri and ask for what Jan is on.  I'm on a waitlist for immunotherapy so don't want to travel to Texas when I'm sick from Folfiri.  Drat MD Anderson told me it would be available in "a couple of months."  So that means I should hear from them anytime now.  They could reduce my dosage, but not sure if I even want to try it again.  I've continued losing tons of hair since Thursday so am very upset that it fell out with just one dose.  My diarhea and nausea has stopped.  Had fevers still last night.  Woke up drenched in sweat.  Had hair fall out anytime I touch my hair.

My primary oncologist was on vacation and didnt come see me, but I am happy because I got to see one who used to be a surgeon and he referred me to a liver and gallbladder specialist at Mayo.  I was very lucky to get an appointment this Tuesday. If he would have been my doctor last fall, I'm sure he would have sent to Mayo when the surgeon here kept postponing surgery. My oncologist said "I can't tell a surgeon what to do." And so he did nothing to help me get it resolved sooner and never referred me to a specialist for it.  I asked repeatedly for help getting tht tube out and surgery scheduled.  I had a tube in from September 1st to November 16th.  It was only supposed to be in for 6 weeks.  I was extremely upset about that. Hope to get this resolved very soon!

I'll update you all after my visit to Mayo this week.

 

God Bless you all!

Joan

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Joan, is it coming out in clumps or just thinning everywhere? I lost a bunch of my hair after being in the hospital for four months after the blood clot. About two months later it started falling out. They figured it was from all the drugs I was on in the hospital, it wasn't from chemo. Anyway, mine thinned out everywhere from the crown back. It was creepy how much came out and it was quite thin in those areas. But, it didn't fall out much at the front. I went and got my hair cut so it wouldn't look so bad but then it stopped and I wished I hadn't, I wished I'd just worked with it.

I just don't want you to do something rash and regret it like I did. And maybe it'll just thin out. I was happy when mine first started because my hair is really thick. Then it went a bit too far and looked odd. But I could have done a style that would have disguised it if I'd known it was going to stop. I find that the different chemos lose their effect after a couple of weeks so I'm hoping your hair loss will stop before too long.

Jan

Trubrit's picture
Trubrit
Posts: 5221
Joined: Jan 2013

Without being too personal, and asking questions of you, I will just share that, while on FOLFOX my periods stopped and I went into menopause, complete with hot flashes. 

Not sure where you are concerning that, but it could be the reasons for the hot sweats. But then, the fever could also. 

Tru

aoccc2015
Posts: 37
Joined: Sep 2017

I am glad you posted this, i keep telling my doc to push the dosage of iri since it dont really notice it much. Im not doing that anymore after reading what you are going through, i really hope you feel better and the effects turn around.

Annabelle41415's picture
Annabelle41415
Posts: 6549
Joined: Feb 2009

So sorry to hear all that you've gone through.  It's a good thing that you are aware of your results and refusing to just do whatever to you.  I'm glad that you asked for a different doctor.  I'd make sure that you have them make a note on your chart that you don't want that particular one.  I've done that before and they should respect that.  Hope that your visit to Mayo gives you some good results and you can get better.  Sorry for the hair loss as well - it's got to be hard with it falling out that fast.  Wishing you the best with your appointment.

Kim

peterz54's picture
peterz54
Posts: 345
Joined: Feb 2012

Joan,

I made a recent post, Fasting and Standard of Care, which probably applies to your situation.

Prof. Longo, who runs a lab at USC, and has been working on cancer issues and working with oncologist for years, has demostrated that limited fasting helps reduce treatment side effeects and likely makes chemo or radiation more effective.   If you're up to it, please see that post and watch the short video lecture (2017 at a leading cancer center in Paris).

I hope you are feeling better soon.

Peter

 

 

 

 

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

Thank you for sharing the research information.

I like to read about anything that can help.  

Joan

Bellen
Posts: 281
Joined: Aug 2016

Hi Joan - My hair was just below my shoulders - it took about 6 treatments when my hair loss was bad enough to wear a wig.  I never totally lost my hair, but I look a little like David Bowie. I had bought a few wigs before started, kind of expected it - although I was very upset.  Also the short hair I have is white, so has aged me (it's the "look good, feel good" thing).  Hair is more important than they consider.  The wigs I bought are called Biolon - very natural looking, clear scalp - just below shoulders (so a longer wig).  But would still like my hair back.  

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

I woke up with a huge knotted mass of hair starting from above my neck and going down.  I thought I could comb most of it out after using a conditioner. No such luck. Couldn't even get a hair  pick through it.  I put the knotted mess up in a bun and put a scarf on top.  My son performed in a musical version of the Titanic, so didnt want to mess with my hair anymore before the play.

Left it up until everyone went to bed then tried cutting a couple inches off the bottom thinking I'd be able to use the pick to loosen the knots.  I worked a little better that way.  Just took really small sections and combed down but most of the hair came out with it.  The left side was worse because I was getting tired and thinking its all going to fall out tomorrow.  If hair loss stops, then I will have enough left to let it grow a bit more and get a good style as you suggested Jan.

This is more hair than I lost in 3 months on Folfox.  So yes I am very upset that just 1 treatment did this to me.  The illness, fevers. and the hairloss.   

I will refuse the Folfiri and ask for a different chemo. I repeatedly asked before and the oncologist here said most patients only get a little thinning from Folfiri.  Guess I'm i that other group that loses more hair.   If they do surgery at Mayo I won't be on any for a 6 weeks anyway.  The clinical trial for immunotherapy should be coming up pretty soon, so maybe I will be lucky and get cured of this darn disease and not need chemo anymore.  

Thank you all for your support and advice.  I am heading to bed so I can go to Mayo tomorrow. I don't want to have any problems driving early on Tuesday.  Much rather be there and get a good nights sleep before my appointments. 

God bless you all!  I will keep you in my prayers too!

Joan

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Joan, you are amazing to keep going, keep fighting, and to NOT lose hope. It's so easy to 'stay down' when we get knocked down over and over by this disease. 

Praying you have a good visit tomorrow and can develop a game plan. And best wishes with the immunotherapy. 

plsletitrain
Posts: 253
Joined: Jul 2017

Wishing you well and hopefully your issues get resolved soon. I was just reading your post and it must have been tough, you are such a strong woman.  

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

I've been really tired for the last month.  Haven't been doing much of anything.  The folfiri must still be in my system.  It's hard to get any housework done.  I got really tired shopping with my sister on Saturday, and we were only at the store for about an hour.   I haven't shaved my head because my doctor said he's not putting me back on Folfiri, so I fugured it should start growing back in anytime.  I won't be getting chemo until the problem with my gallbladder is finally resolved.   

I'm heading back to Mayo on March 7th for a procedure on my bile ducts to help open the cystic duct so my gall bladder will operate normally.  It's called ERCP and is guided by EUS Endoscopic Ultra Sound 

He will do it endoscopically, going through my esophagus to stomach and duodenum then up throught the common bile duct to the cystic duct.  If that doesn't work, he surgeon will place an internal tube from my gallbladder to my duodenum.  That one will require surgery and more recovery time.   Either way, I won't have to worry about my gall bladder rupturing anymore

God Bless you all!

I'll let you know how the procedure goes. 

Ruthmomto4's picture
Ruthmomto4
Posts: 663
Joined: May 2013

my husband  had 4 ERCP’s last year, they were non invasive for the most part and other than the last one he was in and out very quickly. The last one the dr got biopsies of his tumors and placed a stent so it took a long time. I hope you are finally able to feel better when this is done you have been through so much! 

Joan M's picture
Joan M
Posts: 411
Joined: Oct 2016

I was nervous, and feel much better hearing that your husband did well even with 4 ERCP's.  I hope one will be all I need.  The doctor is supposed to place a stent in the cystic duct.  I sure hope he doesnt see any cancer.  So far it's been limited to a colon tumor which disappeared after chemo, liver tumors that were killed off by Y90 and ablations, and some lung tumors only 1 was large enough to ablate, and the others are still pretty small. 

I'll defnitely let you know how this goes for me. 

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