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A Question About the Chemo

susan1069
Posts: 30
Joined: Mar 2010

My first week of treatment, I was given Mitomycin and a 96-hour infusion of 5-FU. The treatment started on Monday and by Wednesday, I was starting to feel really bad. By Friday night, after the 5-FU pump came off, I could barely get out of bed. I was so weak, I could barely get to the bathroom without feeling like I was going to pass out. It was like having the worst flu of my life, but without the fever or aches or nausea. Just extreme weakness and feeling cold and clammy.

When I told my oncologist's office about what happened that following Monday, they looked at me like I was nuts and said that in 15 years they've never seen anyone react like that. They pretty much told me it must be all in my head. My bloodwork at the point was all still normal. My husband and sister saw me that weekend and they were witnesses to how sick I was.

My question is: Did anyone else have this reaction to the chemo? Am I really the only one?

z's picture
z
Posts: 1271
Joined: May 2009

Susan,

I didn't have bad side effects. I certainly didn't feel good. They gave me nausea meds, which I think I only took 1. I hated having the pouch on me, and as soon as it came off I felt so much better. I know I was extremely tired and rested alot. Everyone is different and the chemo people should respect your feelings and offer suggestions to your feeling so bad. My worst side effect was the mouth sores. I did get meds for that, but don't wait to ask for meds for that, because you could avoid them getting bad if you treat them right away. Now there again not everyone gets mouth sores. I understand what your going through and untill someone goes through chemo they will not understand. I wish you well.

Lori

mp327's picture
mp327
Posts: 3107
Joined: Jan 2010

This was something I experienced. My chemo started on a Monday and by Wednesday, it was all I could do to climb the stairs. I was exhausted and every little thing I did wore me out so much, I would have to sit or lie down for awhile. It seemed to be only on the 2 weeks I got my chemo. I had a little nausea too, but that was knocked out by the anti-nausea meds and I never vomited. I really can't believe they would tell you that no one else ever reacted that way, as extreme fatigue is a common side effect expressed by many who get Mito and 5-FU. Radiation can also cause this. I don't think this is "all in your head." I hope that now you are off of chemo for 3 weeks, you won't feel so weak and tired.

susan1069
Posts: 30
Joined: Mar 2010

I definately feel a lot better. Most of the time, I feel almost normal, just extremely tired. Well, except for the radiation side effects (the burning, itching, diahrrea, etc.) I know I have another week of "hell" ahead of me, but I feel I'm better prepared this time. And I know how quickly I will bounce back, so that helps.

SueRelays
Posts: 489
Joined: Dec 2009

You are definitely NOT the only one. although my first round ( same cocktail as you)....went smooth, I thought "this isn't bad at all"...the second round kicked my behind. I also ended up with an infection and spent a couple of days in the hospital. When I got home...it took a good week, to even feel like getting up.
And I HATED the bag as well :(....I know we should embrace all these things that are healing us...but I absolutely HATED that thing! Celebrated every time I got rid of it!!!!!

susan1069
Posts: 30
Joined: Mar 2010

Yeah, HATED the bag. There was an odor from that 5-FU that I couldn't stand. I couldn't get that thing off fast enough!! Not looking forward to the next round, but, well, what can you do? It's encouraging to hear you're cancer-free. You seem like a really positive person, and I hope I can come out on the other side of this stronger than ever.

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

I worked through the first week of chemo but I was not working full time. I used the anti-nausea drugs twice. I got mouth sores - really bad ones. That was when I got "miracle mouth wash"... helped after a bit.

The second "week" of chemo I had a bad bout of nausea and even with anti-nausea drugs regulary, I vomited awfully- and felt really badly for my daughter who took awesome care of me. Had the mouth sores again. I also had a slight fever so was prescribed an anti-biotic. Then I developed a rash and they decided I was either allergic to one of the cancer drugs (mitomycin and 5-FU) or the anti-biotic. I hope I never need any again!

By the time the second week came around my caregiving family was keeping me in bed almost all the time so I don't really know how fatigued I was- all I had to do was sleep, read, eat and talk! I was going daily for radiation treatment and my soul-mate took me to breakfast... they were always early morning. Thus, I don't think I can assess the level of fatigue.

susan1069
Posts: 30
Joined: Mar 2010

Thanks for the info. It's comforting to hear others' experiences. My 2nd chemo week starts Mar. 22, and I am already preparing to have my sister here from Wednesday to Sunday. One thing I did NOT have last time was nauseau. I was so weak I could barely lift my head from the pillow, but I was eating an Italian Sub (we call them hoagies here), which seems funny now to think about! Next time will be different, because now the radiation is giving me horrible diarrhea and gas cramping, so I'm extremely careful about what I eat. It's nice to hear your family was so helpful. Lying in bed is great, but having to drag yourself to radiation when you feel like that is hard. The nurse practitioner at the medical oncologist's office said that most people go to work with that chemo. I was like, "You've got to be kidding me!" I only had minimal mouth sores that went away quickly, but who knows next time? It sounds like people have different experiences from one time to the next. I'm trying not to think too much about what the next few weeks will be like, cause I'm scared and trying to take each day as it comes.

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

I know I totally appreciated having help during that second round. My husband would have fallen apart and I think I would really have had trouble coping without my daughter. I am glad you are having your sister there. Even if you don't have more trouble than the first time, I found myself really needing someone there for me emotionally - wondering if I would continue to feel worse and if this was really working, etc. It is draining and often scary even though our kind of cancer has really good recovery rates. But let me say this, I am two years beyond treatment now and I think I feel more problems from aging than from my cancer experience.... for the most part, anyway! And I continue to be cancer free.
Good luck and always know we are thinking of all you fellow travellers on this road.

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