lindar
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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 Susan. I’m very sorry you and your husband are having to deal with this. My husband had lung cancer a number of years ago and his cholangiocarcinoma was found during his annual CT scan in October 2011. He had surgery but the cancer returned in September and he is now on FOLFIRINOX. My husband also has intrahepatic CC and has never had any symptoms. It is my understanding that the jaundice and other problems so many patients describe are less common in intrahepatic CC. Although my husband has some side effects from the chemo, he still doesn’t have any pain or other problems relating to the cancer itself. He is self-employed and was originally hesitant to tell his clients about his illness. Once he did, however, their support has been over-whelming and he is still working full-time. Your husband will work out what is best for him. It sounds like you are doing all the right things by getting additional opinions, investigating clinical trials and doing research. I have found a lot of support on this board and I know you will too. Take care.
Hi Rebecca. We live in the Chicago area also. Despite all of our excellent medical facilities here, there is not a lot of expertise in cholangiocarcinoma. We consulted with Dr. Daniel Catenacci at the University of Chicago who is knowledgeable about cholangiocarcinoma and is conducting some clinical trials. I think U of C is the best choice in Chicago but we are also exploring options outside of this area so we will be prepared if this chemo regimen stops working. My husband is taking a very aggressive approach to fighting his cancer but this is not the right course for everyone. I wish you and your mother the very best.
Hello and welcome. My husband’s oncologist told us that some cholangiocarcinoma tumors do not express tumor markers. This is a problem only in that it makes it harder to determine whether chemo is working. Although my husband has numerous tumors in his liver, his liver function tests usually are in the normal range. Blood counts were all normal too but they have been affected by the chemo. You can learn a great deal here but remember that each person is different and there is a wide range of responses to each type of chemo. Doctors vary too so definitely look into second opinions.
Thank you for the excellent suggestions. FOLFIRINOX is not much fun. Some of the side effects can be severe and it seems that a new one appears each cycle. Somehow, my husband has managed to keep working and, even more important, has maintained his sense of humor despite having to deal all of othe side effects of his treatment. He really is pretty amazing.
Thank you for posting this study, Gavin. I try to keep up with them but I missed this one and it is quite relevant to my husband’s situation. Linda
I’m very happy that you will be attending the seminar, Marion. The more we know about any advances in treatment, the better. By the way, I am planning to make a donation to the Foundation today to help support its work. I will always be grateful for all the information and support we have received.
Hi Jennifer. Each person reacts differently. My husband has been on this drug (as well as three others) for over two months and so far it has not been as bad as we feared. We live near Chicago and he still takes the dog for walks everyday and usually gets by with his normal winter clothes. When it is especially cold and windy, he wears a ski mask also. I know that some people have more cold sensitivity than he has experienced so far and keep a pair of gloves by the refrigerator for use when they want to reach inside but so far that hasn’t been a problem for him. He also has no problem with cold drinks but some people do experience tightness in the throat and switch to lukewarm beverages. Just tell your mother to be aware of any side effects so she can make any changes necessary to alleviate them before they become more serious.
It really bothers me when doctors make decisions based solely on age. My mother was more active and interested in life at 90 than some people are at 50. My husband is on very high doses of prescription Lomotil and OTC Immodium – 2 of each every 4 hours whenever he is bothered by diarrhea. He also has a prescription for tincture of Opium in the event the other meds don’t help but he has had to take that only twice. He also takes Gas-X as needed. None of this has caused him any problems but he is quite a bit younger than your mother. It really depends on what other medical issues she has and, more importantly, specifically what is causing the gas. As Marion suggested, it could be constipation or, since you mentioned belching, perhaps it is related to heartburn. It just bothers me when doctors don’t take side effects seriously enough. My husband is on Folfirinox, which is one of the toughest chemo regimens there is, but he has managed to continue working and lead a reasonably normal life. Part of that is luck but I think part of it is due to the doctor’s aggressive management of side effects.
Hi Susan. I would recommend pursuing this further with the doctor. Make sure that he or she understands that your mother is in such distress that she is considering stopping treatment. My husband is on a different chemo regimen and had a lot of problems with gas and diarrhea. His oncologist treated these side effects very aggressively with both OTC and prescription drugs and, as a result, these problems are kept under control most of the time. You might also wish to explore changes in diet that might help reduce the gas. Perhaps there is a nutritionist available at the hospital where your mother is getting treatment but, if not, there is a huge amount of information available on-line. I hope she feels better very soon.
Kris, your posts are always so uplifting. Each person’s situation is different but my husband has also chosen to fight this disease as hard as he can in the hope that a new treatment will emerge that will make a huge difference. This means dealing with side effects, staying informed about new drugs and treatments, and seeking second, third and fourth opinions as necessary. Ibutiong, it sounds as though your mother wants to give this chemo regimen a try. I wish her the very best.
Hi Holly. I remember you were having a scan around the same time as my husband and I’m glad you are both starting the year with positive news. Congratulations on your results so far and best of luck with the MRI results. Linda
My husband just finished his fifth treatment today. He’s on FOLFIRINOX which is a very tough regimen but it hasn’t been too bad for him so far. Each individual reacts differently. The day he started treatment, an oncology nurse spent about an hour with us explaining exactly what would happen and telling us about possible side effects and how to deal with them. They give him some medicine to reduce nausea before the treatment starts and so far he hasn’t had any problems. He brings his laptop with him and usually manages to get some work done while he is being treated. Some of the other patients chat or play games and others prefer to sleep. The hospital tries to provide a relaxing and pleasant enviornment for its chemo patients and I think that approach is common these days. I hope all goes well for your sister.
I am very happy that you are doing this, Bruce. The more information we have about CC, the better. I think the genetic information is valuable but, unfortunately, most oncologists aren’t very knowledgeable about it yet and the analysis often isn’t covered by insurance. (We’re still waiting to see if Blue Cross will pick up the cost.) One valuable piece of information we recieved is that my husband has an NRAS mutation that is sometimes found in intrehepatic CC but rarely in other types of CC. (Pancreatic cancer often shows a related KRAS mutation). A positive RAS status seems to indicate that certain types of drugs will not be effective in these paitents. I’m currently trying to research all three mutations to identify clinical trials that might be helpful if the FOLFIRINOX fails.
