Caregiver’s Bill of Rights
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Hi Cristerry. My husband is on Folfirinox – 5FR, oxaliplatin, irinotecan and leucovorin and it sounds as though your husband may be on the same regimen. The leucovorin enhances the effectiveness of the other drugs and has few side effects on its on own. My husband does get a shot of neupogen to help his blood count. Folfirinox is very tough chemo regimen and is generally used only used for people who are in relatively good health otherwise. The side effects Pam mentioned are quite common but my husband has been lucky as, after 8 rounds, his neuropathy is quite mild. He has to be careful outside on windy days and trys to drink beverages at room temperature but so far it hasn’t been too bad. He has never had any nausea although this can be a problem for some people. His biggest problem has been diarrhea which became severe during the last month. However, the doctor reduced his dosage of irinotecan last time and he is now feeling better and we are able to go out to dinner again. He has some problems with fatigue but he has managed to continue working throughout his treatment. There have been some other occasional problems (rash, mouth sores, cracking heels, sore thumbs) now and then, but it really hasn’t been as bad as we expected. My husband has an incredibly positive attitude and that helps him deal with the side effects. Hope all goes well.
Hi,
In general, most people can tolerate the folfox quite well without problems; the pre-medications such as dexamethasone,zofran or other anti-emetic will help the nausea and vomiting. Of course, he will feel tired and have” hand and foot syndrome ” and difficulty to handle cool objects such as a glass of cold water. For specific adverse drug reaction please check the link below .http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=57198#p57198
God bless.
Thank you so much, Pam. Today was his second treatment with this ‘cocktail’. So far none of the symptoms have shown up. I will be on the lookout, though. I hope Lauren is doing ok. Have been following your posts. Thanks so much for responding.
Take good care.Hi Cristerry,
My daughter, Lauren has been on oxaliplatin and 5FU( that is the one you wear at home) at one time or another. Oxaliplatin is the rougher of the two. Lots of neuropathy in hands, feet, and throat. You cannot drink cold drinks with this chemo or it feels like shards of glass or your throat is closing. Wear gloves when handling cold food or frozen food. My daughter had an allergic reaction to oxaliplatin on the 6th treatment of that particular chemo and cannot take it anymore. She turned beet red, thought her throat and ears were closing, and broke out in hives all over. This is not uncommon for this chemo so be aware of the signs generally around the 6th or 7th treatment. 5Fu is relatively easy for Lauren to handle. Wearing the pack is a pain, but the chemo was ok. I also was trained by the nurses to disconnect Lauren myself at home, which was a lot more convenient. She hasn’t had the other two chemos so I can’t comment on those. I am wishing you and your husband all the best.
Hugs,
-PamThe other drug is oxaliplatin. Thy are also giving him leucovorin which, i thiNK is in the shot he gts on monday to keep his white cell count up? Do you know anything about the side effect?
Thanks so much.Hi,
the one you take home should be the 5FU pump infusion for 46hours.
but what is the name of the drug that your husband had while in the cancer center .Was it oxaliplatin or irinotecan?
God bless.THANK YOU! Just today I was saying to myself, “I wish someone would take care of me.” (then felt guilty) My husband has started a new chemo regimen that includes 5fu. Along with a 5-6 hour infusion at the cancer center he has a bag that he takes home that infuses for 46 hours. Can any of you share your experience with this type of regimen?
Angie posted a beautiful poem for caregivers, a job so infinitely difficult for many.
The below Bill of Rights has been around for many years and addressed caregiving from a different angle.
“I have the right to take care of myself. This is not an act of selfishness. It will give me the ability to take better care of my loved one.
I have the right to seek help from others even though my loved one may object. I know the limits of my own endurance and strength.
I have the right to maintain parts of my own life that do not include the person I care for, just as I would if he/she were healthy. I know that I do everything that I reasonably can do for this person. I have the right to do some things just for myself.
I have the right to get angry, be depressed, and express difficult feelings once in a while.
I have the right to reject any attempt by my loved one to make me do things out of guilt or anger. (It doesn’t matter if she knows that she is doing it or not.)
I have the right to get consideration, affection, forgiveness, and acceptance for what I do for my loved one, as I offer these in return.
I have the right to take pride in what I’m doing. And I have the right to applaud the courage it has taken to meet the needs of my loved one.
I have the right to protect my individuality. I also have the right to a life that will sustain me in times when my loved one no longer needs my full-time help.”
(Author Unknown)
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