CSN Login
Members Online: 9

You are here

struggling

zenmonk
Posts: 198
Joined: Nov 2009

This time off chemo sure isnt what I expected. I just got discharged from the hospital yesterday. Food is no longer appealing, nothing wants to stay down. I got so weak from lack of food/ dehydration that I could barley walk. Not sure whats going on with me. I dont know how I can not eat and not be hungry. Struggling to get through everyday without being in the hospital with pain/nausea drugs..... this is terrible.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Awwww, Zen, I'm sorry you're having a hard time. Have they given you Emend to curve the nausea? I know my first time was horrible as well, I thought I was dying, I couldn't eat, move, drink either. It was because of all the nausea and fatigue. The day after disconnect I was just laying there in bed for 3 days till I finally started feeling like myself, and felt fine...but to have the right anti-nausea meds makes ALL the difference in the world. They only had me on Zofran and Compazine, which did crapola! I told the nurses when they called me, what was happening, and they said I would not feel like that again.. they got me better anti-nausea meds, which was Emend, which is a 3 day pills, 3 Dexamethasones, and 2 Zofrans that they give me before chemo now, and I go home too it...I stay on top of it, even though I don't feel sick, I take them anyway, with a couple hits of mj, it will make you feel better. Try eating some saltines and soup, force water down, you must stay dehydrated, so you don't end up in the hospital connected to fluids...

I hope they have something better for you next time, the fatigue I know is horrible, but it does get a little better a few days after the disconnect, you will bounce back, just make sure you tell them nurses how you felt, so they can do you better the next time, I really hope you feel better soon!

Hugsss!
~Donna

coloCan
Posts: 1956
Joined: Oct 2009

like Boost Plus, Ensure Plus,etc? Might want to try these, if you can get it down. I use "Plus" as it has more calories than regular for same amount of liquid. For a time, these were my primary food/calories/nutrition sources til I could begin to eat food again. Hope you feel better soon.....Steve

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

I tried pudding, applesauce, clear soup, toast. I felt much better if I ate just a little.

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

I find that I don't eat much the first few days after chemo. I have found that marijuana does wonders for helping with nausea and appetite. I don't know if it's legal where you are but it's worth trying (IMO). I usually would drink Gatorade to help with dehydration and nibble on crackers or whatever I could.
Hang in there, it will pass
-phil

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I feel awful for you. I completely understand this, as I am going through it too.

Make sure to speak up about all of this, and make your medical team keep tweaking things till you find what works. If you haven't tried Emend for nausea yet, insist on it. MIRACLE drug for me the first few days.

We added a day 4 & 5 pill for me as well this cycle, because I am very sick for 5 straight days (or longer). It didn't seem to help as much on day 5. But that might just be that I was getting so sick with the thrush. I just don't know. Here I am a full week out and having a lot of trouble today. But I have had some Gatorade, some Greek yogurt, and of all weird things - grapefruit sections. Every now and then something sounds ok so I try it, even if it doesn't make sense.

Keep trying things (that don't have much smell) till you find what you can eat. You have to FORCE yourself to eat and drink.

Here is what has worked best for me:
Cream of Wheat (also counts as liquid for hydration)
Oatmeal
Gatorade
Herbal or green tea (none of the ones that have herbs that are controversial)
Crackers
Potatoes
Organic Greek yogurt (on day 1 and 2, then I can't do it for a few days)
Isagenix shake with banana (can't do this on all days - but I do it when I can for more protein)

There are other things I can eat one day of one cycle, and then just can't do it again. I never know till I try. Pears seem to be on my good list most of the time. Once I get a little better sometimes I can eat peanut butter on graham crackers or a sandwich for more protein. Yesterday I ate an egg and cheese on muffin. I wasn't sure till I tried if I could get it down, but it worked! You just have to keep trying. Try a bite - if it doesn't cause gagging - get it down, even though it isn't enjoyable and you aren't hungry. If it just doesn't settle with you, stop and try something else. Keep trying until you find something to put nutrition in you.

I am normally a foodie. I eat pretty healthy and really enjoy food. Right now I do not enjoy it. Not even my favorite foods - I can't tolerate them. But I actually enjoyed the yogurt, granola, fresh strawberry parfaits that my husband got me from the hospital cafeteria last weekend. It was so exciting to enjoy eating something instead of just forcing it in! And yesteray my egg and cheese muffin was pretty good too. But today I'm back to forcing it in.

Push yourself to find what you can keep down. Stay away from strong smells. If possible have someone else make your food, and don't eat it in the kitchen. On my worst days if I go near the kitchen I cannot eat. Just seeing or smelling some things there set me off. It can make a big difference if someone will cook you a bowl of Cream of Wheat and you don't have to go near the kitchen. Or mashed potatoes. Or whatever works for you.

Check your tongue - if it is coated with white and you have an awful taste in your mouth, thrush could be adding to your problem and you need an anti-fungal. I get full upper and lower GI thrush each time. My mouth thrush isn't fun, but it isn't the worst of it - the GI tract is. I think it is one of my biggest problems with nausea. (If your body odor is "off" and you can't stand to smell yourself, and/or you get projectile green foamy off-smelling diarrhea, that can be another sign of thrush - in your GI tract and the rest of your body - not just your mouth.) Magic Mouthwash can be a help if you have mouth thrush - but if you are getting the full body, you need an antifungal like fluconazole.

I didn't think I could continue after my first tx. The second was slightly better. The third was even better - enough that I felt confident that I could get through 12. That is the only time I've felt that way - the rest of the time everything has been too awful for me. I've had a lot of trouble again with 4. But I am determined to keep tweaking to get through it. Speak up for yourself with your medical team.

Keep fighting. I'm rooting for you.

grammadebbie's picture
grammadebbie
Posts: 429
Joined: Jun 2009

So Sorry, I was on pretty much the same meds as Donna. The Emend really helped but pot was the most effective and fast working. I had nausea the whole time but when a bad wave would come over me I would take a couple puffs and it would instantly subside. Hopefully you won't have any trouble getting it. I actually got a prescription from my doctor and was able to get it legally, California. One of the reasons it is so effective is because you don't have to wait to digest it. The smoke gets in your system immediatly so even the pill form isn't as effective. Hope this helps some.

Blessings to all,

Debbie, (gramma)

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

I'm with Phill on this one. I cant eat or drink for the first 3 days after chemo if it wasn't for Marijuana. Here in California you can get a card and get it legally. It has sure helped me and I'm sure a lot of others here on the board too. Give it a try.

Life is funny sometimes
Brooks

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

MJ is the schnizz. I can't get it legally here in my state, but I can get it through other people. It helped me sleep as well, try it, not to get stoned with, just a couple hits is needed. But, if you want to get stoned with it, go ahead, have fun, just make sure you're home and safe :)

Hugsss!
~Donna

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

You wit and down to earth jargan simply makes my day...You are a very funny lady......I giggle everytime I read most anything you write. I think it is the subtle nonchalant grace you try to show then the gal comes out....I dunno how to explain it, but it sure makes me smile......Buzz.......Ok...carry on

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

If I can put a smile on everyones beautiful faces, then it makes my day. Are you saying I'm not graceful at times? me? heehee LOL...

I LOVE YOUR SANTA BUZZ PIC!

Hugsss!
~Donna :)

khl8
Posts: 810
Joined: Nov 2009

I have to agree with the MJ..... It helps the pain from the Neuropathy as well, jsut a few hits and the feet and hands feel much better, or is it that I just don't care anymore.
Also not legal here, but I found someone to assist me!
Kathy

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I think it's because it knocks the "I don't give a crap" mode in us LOL...always useful to have "connections!"

Hugsss!
~Donna

zenmonk
Posts: 198
Joined: Nov 2009

Thanks everybody for some great advice. I'm covered on the MJ dept. it does work sometimes. othertimes its just to severe and it only helps a little. I wished I lived in Cali though. Little hard to find around here sometimes. Thanks again for some wonderful advice and understanding.

grammadebbie's picture
grammadebbie
Posts: 429
Joined: Jun 2009

Iam in California and was able to get MJ legally. One of the nice things about that is the supplier has many many different types. I ended up with 3 different kinds and they all worked in different ways. I was able to choose which worked the best. Maybe next time you can get something different. It was a life saver for me.

God Bless You,

Debbie (gramma)

khl8
Posts: 810
Joined: Nov 2009

I just don't understand why all states dont have it legalized for medical use, they know it works! I just make sure I don't have more that what is considered just a "ticket" in Ohio. I am the same person who obeys the speed limits, won't drive even after one drink, and pays my taxes, a law abiding citizen, but I have to sneak around cause there is not a medication to help my neuropathy! how pathetic!
Kathy

Subscribe to Comments for "struggling"