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From Folfox to Folfiri - Need Advice Please

5678dance's picture
5678dance
Posts: 39
Joined: Mar 2010

I need some advice please. I was just switched from Folfox to Folfiri. Has anyone else been switched this way? I have had 8 treatments of Folfox, and just when I was feeling good about how I was handling all of the side effects, BOOM, they are switching me. (thanks again Craig for the tip about magnesium sulphate, but guess I don't need it now)

The numbness in my hands and feet are increasing in area, and lasting longer. My onc fears permanent damage if we continue, hence the switch. I have 4 treatments left.

I've been warned about the diarreah, and was told to handle it with Immodium every 2 hours, and to continue it for 12 hours after it stops.

What else should I look out for, and anything to head off the diarreah?

thready's picture
thready
Posts: 475
Joined: Sep 2009

5678dance,
I was taken off of the oxi, but continued with 5fu and leucovorian after 9 treatments of full force folfox. I was getting all sorts of side affects then had an allergic reaction at the beginning of treatment 10. My onc wanted to change me to folfiri half way through but I did not because I wanted the folfiri to be in my corner if I had a recurrence.

I did read about folfiri and the two important issues are diarrhea and possible blood clots. After a talk with my chemo nurse and the onc it seems the blood clots are not such an issue, but you might want to talk with your doctor to see if you need any sort of blood thinner just in case. (My onc said it would not be necessary because of the low risk but she would have started blood thinners if other issues would have increased the risk.) One suggestion is ask your dr about the BRAT diet (bannans, rice, applesauce and toast, it works sometimes for diarrhea. You also need to keep drinking the fluids. If you get dehydrated all things get worse.

Since I have come off of the oxi my neuropathy has gotten worse. My onc said it is like when your feet start waking up after they have been asleep. Many here will also tell you that the neuropathy gets worse before it gets better. It also takes time to really see what is permanent and what is not, patience is needed for this one. I have been off of oxi for 4 weeks now and I have crazy pain in my hands, arms, legs, feet and face. My hair is still letting go and I have some vision and hearing issues that are worsening, but hopefully with some more time things will start to reverse. Not everyone gets all of these side effects, one person I know only had mild feet neuropathy that was gone within 3 months after treatment.

I hope this helps a bit and I hope it makes sense. (I had chemo today and worked on income tax tonight so the mind is shot.)

Best wishes,
Jan

PS, Immodium can be your best friend, also the antinausea meds make me so constipated I almost welcome going the other way and that happens the two days before treatment. It is quite a roller-coaster ride.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

The opposite....I was on Folfiri for about 15 months, and now doing Folfox. My Onc only wants me to do 4 treatments before stopping me to try Radio Spheres. He wants me off the chemo for awhile, and said this may not cure what I have, or make me operable, but it will prolong my life and give me better quantity of life. My old onc never even gave me this option.

With Folfiri, I used Immodium AD for the diarrhea, maybe twice a day, one in the morning, one in the evening, watch what you eat, eat alot of oatmeal, Bananas, pasta was good for it, I actually never had a blood clot, and I did many Folfiri treatments.

My pain and pallative crew just gave me a prescription called "Neurontin" which he said would cut down on the neuropathy, and help me rest better, and it actually does let me sleep real well. I just did my 2nd treatment of Folfox, and I feel pretty good, no neuropathy yet, I ate pretty well, and hopefully it won't get worse for my 3rd or 4th treatment.

Hugsss!
~Donna

5678dance's picture
5678dance
Posts: 39
Joined: Mar 2010

I was wondering if oatmeal would help the diarreah. I do eat high fiber cereal, but thought the milk might make things worse. Oatmeal will be a good option for me. I may just have to bake a batch of oatmeal cookies to carry around to snack on too! :-)

I have not heard of Neurontin, but will ask about it. I probably would have needed to be taking it while I was getting the oxi, and it may not work after the fact, but I will ask.

I was able to eat pretty well on the folfox too. I hope that continues for you! My blood work has been good so far, especially nutrition wise, and I attribute a lot of that to being able to tolerate and eat food during the treatments.

I only got nausea once on folfox. I don't think the drugs did that one. I had a fever the next day, so was probably already getting sick. Someone visited me on a Sunday, and ended up coming don with the flu that same night. I had chemo that Monday, and that's when I had the nausea, but Ativan relieved that quickly. I woke up Tuesday with a fever of 102.8, and I was put in the hospital. They had an infectious disease Dr. on my case, (talk about scary) but it as determined I most likely just picked up a bug from my friend.

I hope you keep doing well on your treatments!

Kathi

5678dance's picture
5678dance
Posts: 39
Joined: Mar 2010

I had not heard about the possibility of blood clots. I did develop one behind my right knee during folfox, and am already on Coumadin. My onc nurse says she sees that a lot in women who fly a lot, and I do. I also have an IVC filter. While I shouldn't clot on Coumadin, I'm glad that little bugger is in place.

I will ask about the BRAT diet. I was hoping to get some info like this about foods to eat. I hope it helps.

Glad to know the neuropathy may take a while to relieve itself. I won't be so anxious about it then. I will hope that it doesn't get any worse.

I do have one question about your statement "My onc wanted to change me to folfiri half way through but I did not because I wanted the folfiri to be in my corner if I had a recurrence. " What do you mean by that? Is it not as effective later, if you have already had it?

Thanks,
Kathi

linandtom
Posts: 67
Joined: Dec 2009

We were told about the diarrhea with Folfiri but we were fortunate that it never happened with my husband. He tolerated this treatment very well. It was given every 2 weeks. For about 2-3 days he would be very tired but then he was up and going for the next week or so until it was time for next treatment. He as also switched from Folfox to Folfiri after only 3 treatments as the first scan showed Folfox was not working. Hope Folfiri will be good for you. Only thing he didn't like....was wearing the pump home for 48 hours and it was just a 48 hour reminder that you have cancer and such a pain to sleep, shower with. Hope you have few if any side effects from this regimen. Take care.

5678dance's picture
5678dance
Posts: 39
Joined: Mar 2010

I am used to the pump. I as given 5FU on the folfox as well. I'm with your husband! I hate carrying it too! While at home, I would not wear the fanny pack, and would just lay it beside me. I would forget it was there, go to get up, and felt yanked by my "leash!' LOL I learned to loop the tube near the port, and tape it down. That way, when I would forget, (and still do after 8 treatments)it would pull on the loop first to remind me, rather than pull on the needle.

I find that fatigue has been getting worse, as the number of treatments progresses. I have learned to expect and plan for it, and just get a couple extra days of rest. The Neulasta shots are what really pulls me down for a couple of days. I fought it at first, and tried to be "normal" (whatever that is, lol) but I've given in and just take my pain meds and rest for those two days after the shots.

Some of you may have guessed by my user name 5678dance, that there is some dancing in my life. I teach couples dancing for a living, (ballroom, C&W, latin & swing) but have not been able to do much of that since my surgery in November, and now my chemo. I miss it so much, and cannot wait to get back to it when this is all over!

Kathi

linandtom
Posts: 67
Joined: Dec 2009

So funny I met my husband at a swing dance lesson! We use to have so much fun dancing, can't wait until we can get back to it! We married in March 2008 and found his cancer in May 2008. Been fighting this cancer during our first two years of marriage! I'm just happy God placed me in his life to be here to support him and help get him through this. We'll get our dancing shoes out again one day soon. Thanks for the advice about the pump....good thing to do to keep from jerking it out of his chest when he gets up or rolls over at night. Take care....hope Folfiri is good to you!

5678dance's picture
5678dance
Posts: 39
Joined: Mar 2010

What a way to start a marriage! I'm so glad he has you by his side for this. I had just been in a relationship for a year when I found out I had cancer. We had an instant connection, and were living together within 6 months. His mom died of cancer in May of last year, and he lost his dad to cancer 15 years ago. That was so hard, when I had to tell him I had cancer! I looked him in the eye and said "If you want to leave right now, I would not blame you one bit." He looked back at me and said "The only way I will ever leave you, is if you tell me to go. Are you telling me to go?" Of course I said no, and he has been a rock for me! I thank him for that, so I am thanking you for sticking by your husband! I don't thing the caregivers out there are given enough credit for what they have to do, and the stress they are under. You are all ANGELS!!

I didn't meet my honey dancing. He doesn't dance a lick, except for some two step basics and some slow dancing. (we live in Texas) Everyone is surprised that I ended up with someone who doesn't dance, but I have been doing this for 22 years, and have had my fill of going out to nightclubs. I found a big ole teddy bear, who just loves to snuggle up on the couch, which is especially great right now during treatments. I wouldn't treade him for anything in the world!

Kathi

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

How fun to know all those dances. I watch "Dancing With The Stars" and love it! I wish I knew how to dance like that, LOL...

Yeah, oatmeal wasn't to bad for me, but I used water, salt, pepper and butter in my Quaker Oatmeal, or even those Maple and Brown Sugar flavored ones, bananas n Creme, Strawberries N Creme, and add real berries to it.

Rice also was really good. I like the Brown Rice better then the White Rice, and will stick mushrooms and peas and butter with a little olive oyl in it, I eat that with spinach salad for lunch...I HAVE to have spinach at least once day, I love that stuff with feta cheese, olive oyl, alittle salt and pepper...yummy!

The Neurontin makes ya feel a little dizzy, alittle sleepy, but relaxed, and I didn't have to go "Ouch" yet on anything I've touched, I been even opening the refrigerator door, without it bothering me..the air conditioner was on last night, I am on the pump now, and it hasn't bothered me either. Maybe it takes more then 2 treatments for the FolFox to kick in?? or did you feel it on the first treatment of Oxy?

Folfiri I had some great anti-nausea meds, that I use for the Folfox as well. The Emend, Dexamethasone, Zofran, Compazine, and Ativans. I also felt the longer I was on Folfiri, the longer the fatigue lasted, it was a killer, I'd be laid up for over a week after I got disconnected, and by the time I felt somewhat normal, Boom! I had to go back for another treatment! it was awful!

I'm sure you'll be able to get back into dancing in no time though! just rest that body out ;)

Hugsss!
~Donna

5678dance's picture
5678dance
Posts: 39
Joined: Mar 2010

Anyone can dance. I hope you go out and take a couple classes if you can stand it. It is so much fun, and I attribute the fact that I dance to me getting over the resectioning easier. My body was strong, especially my legs, from all of the activity. The PT's were amazed at what I could do right away. They were always by my side, waiting to catch me, but my strong legs, and strong sense of balance had them stumped, until I told them! lol

I love brown rice too! I will try your recipe. Sounds good! I like spinach too. My onc nurse told me to back off of it, once I was on Coumadin & I was upset about that. My GP, who is also a cardiologist said not to back off. He said eat what you always eat, especially because it is healthy, and make them adjust the Coumadin to you, instead of you changing for it. Good advice! We go through too many changes as it is.

Wow, fatigue for a week. I'm not gonna like that! I am so used to being active, and that's been one of the hardest things for me through all of this. I build my stamina back up, then end up in the hospital for something, and start all over. I have chemo, and the fatigue lasts longer each time. I only have 4 treatments left, and I will get through those too! Thanks for helping me understand what to expect.

Kathi

abrub's picture
abrub
Posts: 2132
Joined: Mar 2010

Mine kicked in immediately. I had an instant reaction to the Oxali of severe trigeminal neuralgia on starting to eat. That started Day 1 when I had lunch after the clinic portion of the infusion (and while on the pump). Maybe I should have had the neurontin. For some reason, it was never suggested to me, tho it was suggested to others having the same treatments.

I think that the drs were afraid - I'd had extreme reactions to everything put into my body; I guess they didn't want to try something else for fear of how I'd react.

AnneCan
Posts: 3692
Joined: Oct 2009

Hi Kathi,

I was on folfox with radiation for 5 weeks last summer. I was switched to folfiri + avastin in September when they determined the folfox was not working for me. I have now had 12 rounds of folfiri + avastin + so far it has worked for me - my 2 colorectal tumours were not detectable on my scan (after 4 treatments)+ the 4 liver mets have been shrinking, measured after 4 treatments + 9 treatments. I will have another scan in May. There have been times when I have been delayed a week due to low neutrophils. My biggest side effects have been fatigue (usually the day of my chemo + 2+ 3 three days later -I have the pump removed 2 days after chemo day), hair loss (but it is now growing back) + some diarrhea. I found it manageble + you can drink cold drinks! Keeping hydrated is really key. You can dance your way through this.

AnneCan
Posts: 3692
Joined: Oct 2009

hello again, this was a repeat; how do you delete?

patsy1954's picture
patsy1954
Posts: 85
Joined: Sep 2009

I was on Folfox from May to Oct, had the 12 doses. Switched me to Xeloda in Nov. It didn't work, the lymph node tumors had "substantial tumor growth" so I have started on Foliri, have had 4 rounds so far. Guess what, no diarrhea, the opposite for me, I got constipated! I am doing fine on the Folfiri, nauseous for a couple of days and then all gets better. I too enjoy dancing. My husband and I Round Dance. It is best desribed as choreographed ballroom dancing. In fact we are going to an event on Sunday, 5 hrs of dancing!! Will take breaks, but still will dance. We tend to dance every other week. Classes on Wednesday of chemo week is too hard. I too was put on neurontin and it helped a bit. Stopped taking it about 3 months ago and still have neuropathy, but it's tolerable. So glad that you have a wonderful person who cares for you and loves you enough to stick with you thru the good and the bad!

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

To Dance, and instill it in some pilates, for exercising, pilates makes you feel so good! I'm not a very good dancer, I'm one of those that will blast the stereo, and start dancing up a storm...(when no ones home, and I'm alone) LOL

Have you tried Immodium-AD as well for diarrhea? I try one, in the morning, and if it's still there, will try again, but it usually does the job for me as well :)

Hugsss!
~Donna

bigCrandy
Posts: 75
Joined: Sep 2008

Hey Dance, I've had 6-months folfox and the neuropathy is quite noticable even 2 and half years later. I was on folfiri plus avastin for 6-months, then 5fu,leucavorin, plus avastin for 3 more months. My first treatment on folfiri caused severe diarrhea within 30 minutes after receiving the irinotecan. They gave me an atropine injection which stopped it in its tracks. After that they gave me the atropine prior to the irinotecan for the next 11 treatments. It was miraculous. There is also a late diarrhea which may or may not happen within a few days that can be controlled with imodium AD. Hope this helps some. I personally preferred the folfiri over the folfox. I am now on xeloda and avastin for the next 6-months, so for so good. Keep the Faith, Randy

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