Question for those who have had a pretty easy time of chemo

polarprincess

I came across an article yesterday where a cancer patient was so ill from chemo and was depressed and having crying jags as well until she asked her doctor to switch her anti nausea meds from ativan to emend, and it made a world of difference to her, and she was able to cope. I have made no secret of the nightmare i have had with chemo and the meds they are giving me with the infusion are Aloxi and Decadron. When i look at the main side effects of these drugs the decadron does list irritability, nervousness, mood swings. They sent me home with compazine but the list of side effects of that one look so nasty and increase fatique and i do not want that, so have avoided taking it altogether.

I realize people switch meds all the time to control their nausea, but I am not really talking about the nausea here, nor was the above cancer patient, just how changing drugs may have an effect on how other things affect you like fatique, depression, muscle pains, etc... and so now i am thinking, maybe it is not all the actual chemo, but is some of the support drugs causing my issues.

The aloxi and decadron as a pre- infusion have prevented me from having nausea, so in a way i am afraid to switch, but if it could possibly make a difference in how i feel, i would be all for it. I have heard many of you speaking of Emend as a miracle drug, but is this something they do in the pre- infusion, or just something you take after?

So anyway, i guess the point of my post is for the people who have a relatively easy time with their chemo, I am interested to see if there is a pattern - certain drugs you were prescribed as support meds that may be making the difference.

msccolon

drugs and side effects
Polarprincess, i think your reaction to chemo has more to do with your body chemistry than the actual drug you take. We are all so different that some drugs just work better than others; our job is to work with all the resources to find what works best for us. For me, the Aloxi at infusion just didn't work well enough to control my nausea. When we added the Emend-Decadron combo, that was the ticket for me. You can actually get it either IV or in the 3 pill packet format. I did the pills, which involves taking a larger dose pill of Emend prior to infusion, then one lower dose pill each of the following 2 days. The decadron came in starting day 2 for 3 days. I discovered that if i didn't take my full dose of decadron i was in for the crying jags, and actually just found that out by mistakenly skipping a dose. I also discovered the addition of Sandostatin as an injection given once monthly made a WORLD of difference in my energy levels and ability to function on days 2-5 as well as decreased the extent of the diarrhea I had. I called it magic juice and was very grateful for it! It was actually added after a particularly bad episode of diarrhea after treatment #4 of FOLFIRI. I don't actually take Ativan for nausea, outside of anticipatory, taking it prior to treatment. I usually take Ativan when the insomnia sets in and when anxiety starts getting the better of me. I had prescriptions for Compazine, Zofran and Phenergan prior to the Emend-decadron and never really needed any of the others after that.
That's my story, I am sure you will hear a multitude of different ones from the others! Good luck with your treatments, you will do well as long as you continue to seek information to help make this journey easier!
Mary

Madre

I started out with pre-meds
I started out with pre-meds of Oxali, adavan, compazine and something else, then chemo then when I got home I had the compazine and adavan (I took adavan at night to help sleep). I felt yucky so I asked for better nausea meds. I still get all the above plus emend infusion then emend pills for 2 days after chemo and decadron for 4 days after (less dose spread out over more days.)and vitamin B6 (for nerve issues from oxplatin). It gives me more energy, better appetite. I do notice though that when I stop the decodron I get soft tissue muscular discomfort. Not really pain, but my neck and shoulders feel like I've been riding water rides or roller costers all day. I noticed the nausea I felt wasn't like typical nausea, it was more just upset stomach and abdomin. I take some meds and it's better. I used to get really depressed the 2 days after chemo, but I think it was because I just didn't feel right and I couldn't control it. By day 4 there was a light at the end of the tunnel. Now with emnd I feel better so I don't get so bumbed out. Good luck trying to find what works for you.

polarprincess

thanks
your comments have given me much to think about. I have heard of that sandostatin drug- i need to check into that. I am also glad to hear someone else describe that the "nausea" was more upset stomach and yucky feeling because that is how i feel so i haven't taken any of the compazine i was given because i didn't figure that qualified as nausea, but maybe i need to try that, because the worst part of my symptoms is that yucky upset stomach feeling. I have just been so afraid of taking a drug that might make me feel sicker than I already am.
p.s. i noticed that emend has a side effect of hair loss. Has anyone noticing this? of course we know the chemo can cause that too, but did anyone notice an increase with the emend?

lfondots63

drugs and side effects
Hi,

I only took the premeds for nausea when I was on folfox. Most of my upset stomach was just that 'yucky' feeling. I had mood swings too and found that naps and sunshine helped. I think what helped me the most was 'doing' things. Just sitting out on in the sun on a nice day would chase away the blues. Going out with my kids and doing 'normal' things helped too. I also tried small meals to help with the nausea. I got these ricola lemonmint breath mints (chewy) that I would suck on when I was nauseous. Also fruit juice seemed to pick me up. I love the V8fusion drinks even now. HUGS and I'm sure you will find what is right for you. (HUGS help too!!!)

Lisa F

msccolon

polarprincess said:

thanks
your comments have given me much to think about. I have heard of that sandostatin drug- i need to check into that. I am also glad to hear someone else describe that the "nausea" was more upset stomach and yucky feeling because that is how i feel so i haven't taken any of the compazine i was given because i didn't figure that qualified as nausea, but maybe i need to try that, because the worst part of my symptoms is that yucky upset stomach feeling. I have just been so afraid of taking a drug that might make me feel sicker than I already am.
p.s. i noticed that emend has a side effect of hair loss. Has anyone noticing this? of course we know the chemo can cause that too, but did anyone notice an increase with the emend?

Emend and hair loss
Yes, I did notice an increase in hair loss, but for me it was WELL worth it to not have the nausea and vomiting!
Mary