Questions.....

IzzieCat · September 2007

I am starting chemo on Monday morning (Folfiri plus Avastin) I am nervous, but think I am ready for it. My onc. gave me prescriptions for anti nausea meds, and I have those, but nothing for diarrhea, if that should happen. I know that this cocktail can cause that. I am going to buy a few boxes of Immodium to have just in case. Is there anything better that I could get, over the counter? My onc. didn't give me a prescription for anything for diarrhea. Just trying to be prepared for anything! This is going to be an adventure, as I don't know how I'll react to this combo of drugs until I get it....

Worried, but hanging in there....
Mary

Sunriver · September 2007

Hi Mary,

You are wise to try and be prepared. You will want to be aggressive with your anti nausea and diarrhea meds. You will want to take the max dosage of anti nausea meds even befor you have any nausea - you need to stay ahead of it. If you have nausea even with the meds you need to let your docs know as they may want to try different meds.

You also want to be aggressive with diarrhea meds if you start to get diarrhea. Not everyone does so you will want to wait and see and take the max dose if diarrhea appears. You will also want to keep your docs aware of any diarrhea as it can get out of control and there is more they can do if they are aware of you situation.

Sounds like you are headed in the right direction. Stay positive and you'll get through it just fine...Mark

spongebob · September 2007

Mary -

I agree totally with Mark - get ahead and stay ahead of both nausea and dirrhea. Two suggestions - drink LOTS of water and consider a high fiber diet- you might even ask your onc about Metameucil or some sort of natural fiber supplement. I know that usually tends to make people go more often, but in our case it tends to S-L-O-W things down a bit.

Hang in there!

- SB

cahalstead · September 2007

Please don't be too fearful about your first chemo treatment.

I am on the Folfox regimen. I didn't notice any major side effects after the first and second treatments. I did have numbness and tingling in my hands and food was a real issue with me. I had my first 3 treatments in the hospital so eating was tough. There was a certain smell that I associated with the food so I had to have food brought in to me from the outside. I actually felt okay for the first three or four treatments. Diarrhea and nausea have never been a big problem for me. I take my nausea meds regularly and have steriods at chemo time to help with nausea. My biggest problem now is the weight gain from the steriods, I have 1 treatment to go and am looking forward to getting a handle on my weight gain and my neuropathy residuals. Immodium will do the trick for you, I've had to use it and it works well, I do take more than 2, more like 4.

You will be surprised, I think, at how well you will do. It's not nearly as frightening as it sounds.

The chemo journey is a long one, I didn't think I'd ever finish but here I am getting ready for my last one this coming week.

Take care and keep us posted on your progress.

Char

IzzieCat · September 2007

cahalstead said:
Please don't be too fearful about your first chemo treatment.

I am on the Folfox regimen. I didn't notice any major side effects after the first and second treatments. I did have numbness and tingling in my hands and food was a real issue with me. I had my first 3 treatments in the hospital so eating was tough. There was a certain smell that I associated with the food so I had to have food brought in to me from the outside. I actually felt okay for the first three or four treatments. Diarrhea and nausea have never been a big problem for me. I take my nausea meds regularly and have steriods at chemo time to help with nausea. My biggest problem now is the weight gain from the steriods, I have 1 treatment to go and am looking forward to getting a handle on my weight gain and my neuropathy residuals. Immodium will do the trick for you, I've had to use it and it works well, I do take more than 2, more like 4.

You will be surprised, I think, at how well you will do. It's not nearly as frightening as it sounds.

The chemo journey is a long one, I didn't think I'd ever finish but here I am getting ready for my last one this coming week.

Take care and keep us posted on your progress.

Char

Thanks for the encouragement Char. I am not getting FolFox, I am getting Folfiri. I can't have steroids because of diabetes. I think the side effects of FolFiri are a little different.
SpongeBob and Mark, thanks for the advice. This is my second time on chemo. Last year I had 5FU, and it made me horribly constipated! I think Camptosar is different....they keep warning me about diarrhea. Who knows, maybe I'll be constipated again....Anyway, I am prepared, in any case! Just wish I could fast forward the next couple of months....I think the fear of the unknown is the worst!

Mary :-)

AuthorUnknown · September 2007

You get loperamide actualy it's just Immodium take 2 every time you explode on the bog wiv water........... don't worry.

Regards

Adam

KFalvey · September 2007

Hi Mary,

I know how you feel, I went through the same feelings last year before starting Folfiri with Avastin. I didn't ever get diarrhea from it, just like you, I got constipated from it too. When they start giving the Irinotecan you may get a gurgling in the stomach and alot of gas causing belching. Also I stopped all premeds(steroids and anti-nausea meds) because they caused more problems than helped. The chemo does build up in your system and cause more fatigue after a few doses. I only had to use compazine(anti-nausea drug) if my stomach got queazy. I bought a huge box of Immodium but never needed it. I did have some hair loss, but not as much as my doctor expected (he said I'd loose it all in about 3 weeks). I bought a wig before hand to be ready, but never put it on.
I hope you have an easy session with no problems. Good Luck and you'll be in my prayers. Kandy

IzzieCat · September 2007

KFalvey said:
Hi Mary,

I know how you feel, I went through the same feelings last year before starting Folfiri with Avastin. I didn't ever get diarrhea from it, just like you, I got constipated from it too. When they start giving the Irinotecan you may get a gurgling in the stomach and alot of gas causing belching. Also I stopped all premeds(steroids and anti-nausea meds) because they caused more problems than helped. The chemo does build up in your system and cause more fatigue after a few doses. I only had to use compazine(anti-nausea drug) if my stomach got queazy. I bought a huge box of Immodium but never needed it. I did have some hair loss, but not as much as my doctor expected (he said I'd loose it all in about 3 weeks). I bought a wig before hand to be ready, but never put it on.
I hope you have an easy session with no problems. Good Luck and you'll be in my prayers. Kandy

Thanks Kandy. You made me feel better! For some reason, I am really scared of Folfiri. How long were you on it? Were you on the every other week schedule? Did you have good days between treatments? And how was it without pre treatments? I can't imagine! I am being so wimpy about this, I know. I just don't want to go through chemo again! But, I really don't have much of a choice...About the hair...Some have told me they lost it all, and some have said it just thinned. I have very thick hair, so I don't know what to expect. But, I have gone to look at wigs, and have picked one out that I like. I'll wait a few weeks and decide then. Thanks again...

Mary

goldfinch · September 2007

Mary,
I have been on irinotican a few times. I have found it the most difficult to tolerate, but i'm sure that's just me. I am currently on it again, this time with vectibix.
The first 2 days I tend to get constipated. I thought that was due to the premed atropine. Had them stop that. Didn't make a difference.
Then the diarrhea starts on the 3rd day. Last year, when I was on it I used way more imodium than recommended, lomotil and sandostatin (an injection into the tummy that I gave myself). Noting seemed to work. I stopped the irinotecan then.
I resumed it this August. I'm concentrating on food now. I read that a macaroon (Archway brand) in the AM and PM helps (i wish I liked macaroons!). I do use a metamucil wafer in the AM. Doesn't sound right, but it seems to work. I avoid fresh fruits, vegies, high fiber grains (except my metamucil) when the diarrhea starts. They make my tummy hurt!!
I've only needed one tablet of imodium since starting in August (3 doses).
I will say I'm very tired, but that may still be partly due to brain radiation which ended at the end of July.
I lost my hair everytime I was on this drug, but I've heard many people just get thinning.
I don't have hair now, but again, that's from the radiation.
Good Luck!
Mary

jams67 · September 2007

Mary,
Don't forget to watch for mouth sores and treat them quickly. Biotene toothpaste works great! Also use a good lotion on your hands and feet. Several have been mentioned on this site. My onc suggested Eucerine (sp).
Jo Ann

claud1951 · September 2007

Hi Mary,

I have been on Camptosar/irinotecan for a couple of months now.
I know what you mean when they say it will cause diarrhea but, like the others, I get constipated for about 5 days. Acutally I get constipated the first time I go then can get diarrhea the next.

It's kind of crazy cause you don't know what you'll get but like you said, you are prepared for anything!! That's a good thing.

My Nurse told me that if you have 7 instances of diarrhea go to the hosptial.

When I get my treatment, one of the cocktails is nausea medicine. ( I very seldom have to take a pill at home). On occasion I have but not much.

Also, at the time I'm on the IV, that is when I have side effects from the Irinotecan and they give me a shot of Atropine. That stuff is great cause it stops the side effects in 30 seconds.

Again, I can only tell you what my side effects are but if you have these..tell the nurse right away and don't wait!! That is important.

running nose, watering eyes, upset stomache, sweating like crazy (I thought I was having a bad hot flash!!) feeling like you have diarrhea.

They did tell me that my hair would thin. It has thinned alot. I also had thick hair, and I have 3 more treatments left (6 more weeks). I'm thinking I might look at wigs. My scalp is now visible and I've never seen it before!! Oh well. that's okay and I can deal with that.

I'm also on the 5FU pump for 46 hours.

I'm sorry this didn't get to you before you had to go for the first time.

Best of luck to you and keep up the good attitude!

claudia

IzzieCat · September 2007

claud1951 said:
Hi Mary,

I have been on Camptosar/irinotecan for a couple of months now.
I know what you mean when they say it will cause diarrhea but, like the others, I get constipated for about 5 days. Acutally I get constipated the first time I go then can get diarrhea the next.

It's kind of crazy cause you don't know what you'll get but like you said, you are prepared for anything!! That's a good thing.

My Nurse told me that if you have 7 instances of diarrhea go to the hosptial.

When I get my treatment, one of the cocktails is nausea medicine. ( I very seldom have to take a pill at home). On occasion I have but not much.

Also, at the time I'm on the IV, that is when I have side effects from the Irinotecan and they give me a shot of Atropine. That stuff is great cause it stops the side effects in 30 seconds.

Again, I can only tell you what my side effects are but if you have these..tell the nurse right away and don't wait!! That is important.

running nose, watering eyes, upset stomache, sweating like crazy (I thought I was having a bad hot flash!!) feeling like you have diarrhea.

They did tell me that my hair would thin. It has thinned alot. I also had thick hair, and I have 3 more treatments left (6 more weeks). I'm thinking I might look at wigs. My scalp is now visible and I've never seen it before!! Oh well. that's okay and I can deal with that.

I'm also on the 5FU pump for 46 hours.

I'm sorry this didn't get to you before you had to go for the first time.

Best of luck to you and keep up the good attitude!

claudia

Hi Claudia;
Thanks for the info. I just got home from my first infusion. I arrived at the clinic at 8 am, and didn't leave until 5 pm. What a long day! And they put me in a private room....My husband was there, but he was dozing much of the time, so I was sort of going stir crazy....Not too many problems today. I had 2 shots of atropine. What I did notice, and did not like, was the over amount of saliva that happened! Now I'm sitting here with this pump on, and I hate it already! Can't wait until wednesday when the take it away! I am hyper aware of the sound it makes....The nurse told me today that I WOULD lose my hair...she made it sound like BALD....Guess I'd better go buy that wig! Oh well, we'll see what the next few days bring....

Best,
Mary

hopefulone · September 2007

Mary, I so hope it went ok for you today . No experience with the folfiri, but just want you to know your in my thoughts and prayers. God Bless.
Diane

KFalvey · September 2007

IzzieCat said:
Hi Claudia;
Thanks for the info. I just got home from my first infusion. I arrived at the clinic at 8 am, and didn't leave until 5 pm. What a long day! And they put me in a private room....My husband was there, but he was dozing much of the time, so I was sort of going stir crazy....Not too many problems today. I had 2 shots of atropine. What I did notice, and did not like, was the over amount of saliva that happened! Now I'm sitting here with this pump on, and I hate it already! Can't wait until wednesday when the take it away! I am hyper aware of the sound it makes....The nurse told me today that I WOULD lose my hair...she made it sound like BALD....Guess I'd better go buy that wig! Oh well, we'll see what the next few days bring....

Best,
Mary

Hey Mary,

I'm glad you made it through the first session, and sorry I didn't get back to you before you went. The first time they infuse slowly to make sure you don't have any bad reactions to the drugs. Next time it will get shorter and the third time will be even faster.(At least that's how mine went.) I had 12 treatments, one everyother week. I hated the pump the most, but got through it until the 10th treatment I decided to stop 5FU. It builds up and causes me respiratory problems. It did on FOLFOX also. I did continue the irinotecan and Avastin for the last 3 treatments. Between treatments I had mostly good days, some lazy from the fatigue, but I didn't feel bad.The premeds caused me headaches that caused nausea, so I tried it without and had no problems. The saliva is what causes the gurgling stomach. I also got an itch deep inside my ear canal during infusion. About the hair, mine was thick too, not anymore, but no one noticed. The first thing they would say is "at least you didn't loose your hair". Around treatment 3 I thought it was all going to fall out, but losing it did slow down after awhile. I used NIOXIN Scalp Therapy (you can get it at Walmart salons or J.C.Penneys hair salons). I also developed canker sores in my mouth and on my tongue almost every time. That was no fun. Wishing you an easy time with this treatment, and I know how you were dreading it. Hang in there!! Kandy

Questions.....

Comments

Discussion Boards