Chemo advice

worriedson714

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.

copd

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 . 

Real Tar Heel

worriedson714 said:

large dose vitamin d

    Is that in pill form ? my dad has a urostomy so he is already prone to dehydration so been looking for something to help . 

Yes, pill form, but if you

Yes, pill form, but if you all go that route, only do D3. BTW, don't mean to imply that D3 will help with hydration, that's separate...but taking the pills I do get an extra glass of water in lol

SnapDragon2

For D3 make sure it has K2

For D3 make sure it has K2 with it.  K2 is the carrier.

DanNH

I ordered a cold pack hat on

I ordered a cold pack hat on line for Pam. We chill it in the fridge (not freezer). The coolness gives her relief from the painful scalp that feels like the hair is being pulled the wrong way or matted. Got it on Amazon. 

worriedson714

steroids

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 ? 

Trubrit

Steroids

They come part and parcel with chemo.   I think pretty much everyone gets them, at least with infusions. They help counteract nausea and vomitting. 

The side effect they had on me, was to make my mind race. It made for way too many sleepless nights, as things went around and around in my head. 

Tru

DanNH

Ditto Tru. Pam gets them. I

Ditto Tru. Pam gets them. I heard an oncology nurse explain to another patient that it calms the immune system and allows the chemo to be more effective or something like that, if I remember correctly. It was some time ago. 

Real Tar Heel

DanNH said:

Ditto Tru. Pam gets them. I

Ditto Tru. Pam gets them. I heard an oncology nurse explain to another patient that it calms the immune system and allows the chemo to be more effective or something like that, if I remember correctly. It was some time ago. 

I'm told the roids are to

I'm told the roids are to help with the energy levels. I'm skeptical of their effectiveness in that department,

worriedson714

Thanks guys

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 . 

abita

worriedson714 said:

steroids

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 thought everyone gets

I thought everyone gets steroids with chemo. I have always gotten it. I am told it helps with not having allergic reactions and nauseau.

When I was on a drug I was allergic to, I would take steroid pills the day before infusion too.

abita

worriedson714 said:

Thanks guys

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 . 

I googled does medicare cover

I googled does medicare cover visiting nurse service and got info that in some cases yes. I didn't delve into which cases, but there is infor on teh medicare site. Sorry can't help beyond that. My insurance covered a visiting nurse checking on my bandage after surgery, but that doesn't help. It also covered home health aide, but just for when I was first out of surgery. Again not helpful, as insurance is different I imagine from medicare.

myAZmountain

worriedson714 said:

steroids

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 ? 

Decadron 10mg.

Was given with every chemo infusion session that I had. They also gave Antiemetics, Magnesium, Benadryl, and a bunch of other stuff. With the way my joints hurt now I would have asked them to skip the steroid. 

Real Tar Heel

worriedson714 said:

Thanks guys

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 . 

my father is in his 90s on

my father is in his 90s on medicare and has a supplemental policy. He has a home health nurse and a PT they make home visits. My mom is still here and can do some things but not so much. The home nurse sees him once or twice a week IIRC. So maybe you can't rely on them to do daily maintenence.

worriedson714

medicare

I will check with medicare I don't really think he needs one for daily maintenence I can handle that it's like twice a week when his bags need to be changed and his drain gaze be changed that I need help with . Then hopefully the nurse could help me learn to do it confidently then we wouldn't need her . Seems like medicare is the best bet I will call them in the morning . 

worriedson714

Chemo 1

         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 . 

abita

worriedson714 said:

Chemo 1

         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 . 

Make sure to remind them at

Make sure to remind them at second infusion when see doc that the nausea med didn't work so they should try a different one.

If you have portal messaging, I would send the message now too so they have it ready. I wouldn't call because I hate calling people, but tht is an option too

DanNH

worriedson714 said:

Chemo 1

         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 . 

I do updates for the same

I do updates for the same reason, and post about things we learn along the way. I have gained some pretty important information from others who thought to post their experiences. It has saved my wife from unnecessary suffering in a few instances. Maybe our posts will help someone else. I will certainly read your updates!

worriedson714

yep

Will do abita was hoping there was some other nausea meds to try plan to take to nurse in the morning when he gets his pump off 

 

Same with me dan reading people's experiences is really where I have learned the most nothing like the wisdom from those who live it .

worriedson714

strange one

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 . 

SnapDragon2

Is it from ostomy or the

Is it from ostomy or the urostomy?

Is it forming around the stoma or from the inside?

Is t like mucus, does it have any blood or puss?