Folfox - Finished 8 of 12 - Its getting tougher !

meg724

My father finished his 8th Folfox treatment of 12 about 2 weeks. With the 8th treatment things have really gotten tough. It seems as though he has barely recovered and is due for #9 (assuming his counts are ok). He did really well with 1 thru 7, just some fatigue and loss of appetite for approx. 5 days after. With treatment #8 there has been almost no recovery - major fatigue, can barely eat, diarrhea, dry mouth, etc. Can't imagine how he'll get thru the next 4 treatments? I'm wondering - is this typical? Is there anything we can do other than to push fluids to move the chemo thru faster? Any input will be greatly appreciated.

taraHK

I'm sorry to hear your father is having such a tough time at the moment. I was on FOLFOX myself -- finished in December. I hate to say it, but things started getting much tougher for me after about #8. And, in the end, I only completed 11 out of 12. I would talk with his doctor and/or nurses and other staff and see if you can get specific treatment or advice for each of the troubling symptoms he is having (dry mouth, diarrhea) -- are there other things they can try? Not being able to eat is a concern -- is there anything he can tolerate? Is it related to nausea? If so, can he try a different anti-nausea medication? Finally, even if his counts are OK, might he want to consider delaying the next treatment (and possibly subsequent treatments) by a week or so, just to give him a little longer to recover. I had a number of delays due to low white blood cell counts and my oncologist told me that research had shown that delays up to 2 (or was it 3?) weeks in any cycle don't affect the effectiveness of the treatment.....I wish him all the best. Take care of yourself.
Tara

CAMaura

Hi Meg - So sorry to hear that your dad is having a harder time on FolFox. I made it through seven without too much discomfort (although it took the first three to settle into the correct anti-nausea drugs). I could only make it through nine of 12. My body really started reacting poorly - even through the pretreatment drugs. I do not know if you have looked at all of your father's bloodwork or if you have discussed lowering the dosages to allow him to continue. I would speak with his doc frankly about the level of fatigue, etc., and come to a collaborative end....Make sure that your doc takes you and your dad's care very seriously. I know that chemo is meant to help all of us - but there are limits to what a body can withstand and I am sure you are trying to weigh things in you rmind; I am also sure your father is very appreciative of your care and concern. All the best and I hope you receive some good info from the doc and that you are able to watch your dad very closely. Take care - Maura

sam991

Make sure the onc is aware of the detail of the side effects. Don't let your dad just tough it out without a consideration of any options. All the best.

Colin

dash4

Hi,
Sorry to hear about your dad. I am a caregiver for my husband and a dental hygienist, so I am sensitive to the oral side effects. Is your dad doing anything for his dry mouth? Biotene products are great. There is a mouthwash--NO alcohol in it like many others which make the dry mouth worse. There is a toothpaste--it does not "Bubble" like other toothpastes, but that bubbly effect also dries out your mouth. Plus if he wants gum--get Biotene or any brand with xylitol-it replaces the anti-bacterial effect you lose without your saliva. And Biotene has Oral Balance--it is a saliva substitute--it can be used as much as needed-take a little and swish around and swallow--aids in eating and great before bed. Plus he could also use a Colgate fluoride prescription called Prevident 5000 Booster. It also helps strengthen the teeth to prevent decay problems from the dry mouth. Well, I told you I take it seriously. My husband had 7 months of 5FU and is now with erbitux and irinotecan. These products have worked great for him and alleveiated problems we hear about others having. Any other questions-let me know. Good luck to your dad.
Dash

kangatoo

dash4 said:

Hi,
Sorry to hear about your dad. I am a caregiver for my husband and a dental hygienist, so I am sensitive to the oral side effects. Is your dad doing anything for his dry mouth? Biotene products are great. There is a mouthwash--NO alcohol in it like many others which make the dry mouth worse. There is a toothpaste--it does not "Bubble" like other toothpastes, but that bubbly effect also dries out your mouth. Plus if he wants gum--get Biotene or any brand with xylitol-it replaces the anti-bacterial effect you lose without your saliva. And Biotene has Oral Balance--it is a saliva substitute--it can be used as much as needed-take a little and swish around and swallow--aids in eating and great before bed. Plus he could also use a Colgate fluoride prescription called Prevident 5000 Booster. It also helps strengthen the teeth to prevent decay problems from the dry mouth. Well, I told you I take it seriously. My husband had 7 months of 5FU and is now with erbitux and irinotecan. These products have worked great for him and alleveiated problems we hear about others having. Any other questions-let me know. Good luck to your dad.
Dash

Hi Meg...a small suggestion for nausea and the dry mouth. I used to drink ginger ale. The trick is to open the bottle and let it go "flat" ie; release all the fizz. It was very beneficial in helping to stave off the nausea feeling and also very refreshing.
Ross and Jen

meg724

kangatoo said:

Hi Meg...a small suggestion for nausea and the dry mouth. I used to drink ginger ale. The trick is to open the bottle and let it go "flat" ie; release all the fizz. It was very beneficial in helping to stave off the nausea feeling and also very refreshing.
Ross and Jen

Thank you all so much - this message board has been an incredible resource. We have already tried your suggestions - these are the things that Dr's. either don't know about, or don't have time to share. I don't feel quite so alone in this battle. Thank you all for sharing!