Chemo advice

abita said:

I am not on folfiri, but I am

I am not on folfiri, but I am on irinotecan. I decline the meds that the use to prevent the diahrhea side effect as I don't get that one. I have been on the drug for 2 years, and only recently found out that it also stops the horrific mucus and congestion I get after the infusion. I had no idea the meds work on that too! And because I usually leave right after, no one noticed. But a couple infusions ago, a nurse saw me coughing to the point I was getting the gag reflex, and she explained to me. I have now taken the meds for two infusions, and it has changed everything!

So, just in case, he declines that medicine due to no diahrhea, realize if he gets congested after irinotecan, it helps with that too. Now some give the meds regardless, but where I am at now, they don't give it unless it is needed, which is good. We get enough meds, no need to take something that doesn't help. It actually fell on me, because they always ask, and as someone who has had allergies for decades, I didn't even think to explain how bad the congestion was after infusion. To clarify, I blame myself, they don't. They are just super happy they helped me get one less side effect once they knew. The infusion nurses where I go are amazing and so sincere in their compassion for their patients.

Do you have copd or anything like that is that why the mucus as a side effect ? My dad has copd so he always has congestion and mucus never heard of this side effect thanks for this info . 

Anyone have steroids given to them during chemotherapy ? they are planning to with my dad and said it would make him feel much better . But I am also wondering if there is any affect done to the cancer by this ? Or is it just to manage symptoms ? 

I had never heard of it so thanks guys also anyone know of any programs to help get home nurses into the house a few times a week ? My dad is on medicare and we don't got alot of money so it would need to be cheap everything i can find is like $60 a hour . My step mom and dad are having marriage troubles and she is refusing to help with his bag and to clean his kidney drain like the doctors told us to . I help alot but its all just alot for just me to deal with so I'm freaking out since I struggle with ocd and aniexty issues myself really need some extra support with chemo coming . 

         Chemo one went good actual infusion time was much shorter then we expected it to be only a few hours . Avastin was held back this time with my dad's colostomy and urostomy oncologist doesn't want to over do it until he knows how dad will handle it . Some nausea came up pretty quickly once the pump was on . Nausea meds didn't help but ginger snaps did so even though I don't like the extra sugar I was glad for that . Blood work wasn't perfect but good enough few things I want to talk to oncologist about like high sugar and MCV of only 77 . Now dad is having hot flashes not sure if that is a side effect or not going to keep a eye on it though . Does have diarrhea but hopefully that gets better once he finishes the antibiotics today . Seems to be in pretty good mood all things considered hoping his appetite picks up very hard to get him to eat right now trying to convince him to drink ensure . 

PS any new to chemo shave your chest hair thankfully our home nurse was here when the sticky thing over the port holding the needle in came off. Also thanks for the idea of updates dan hope you don't mind i copy it maybe one day my dad's experience can help someone else . 

Update - dad is consipated started him on senna but still seems to be feeling okay went for a walk which was good even though his neuropathy is acting up . The one strange thing is his stoma has like white stuff leaking out of it sorry if that's gross not sure if its the chemo or what anyone heard of this ? Have a phone appointment with nurse tomorrow will bring it up to her see what they think of it .