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Halfway through and feeling blue

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

Hi all, I know this is going to be a major whining post, but I need to get some of this stuff off my chest, and you guys are the only folks I know who are going through this...so forgive me...
Just finished round 2 of 5FU/Leuco, and despite the first 11 treatments going well, I feel like #12 treatment sent me into a whole terrible new world.
Except for increasing fatigue in the past, I felt truely lucky to have only minimal, annoying symptoms, part when I read what others have endured. Since my last treatment, however, (over a week now) I have just about completely lost my appetite and sense of taste. Only salty and sweet seem to get through. Most stuff tastes like applesauce/sawdust with no flavor. On top of that, my stomach reacts by going into hyperdrive with any meat, butter, milk products and fresh fruit and veggies. Immodium seems to control the diarrhea for now. Sure is limiting what I attempt to eat, and since it's all tasteless now, it's hard to force it down. I've lost weight this past week, which is also new. The fatigue and lack of initiative are also much greater; I find it hard to concentrate on reading, which has always been my great escape. Despite all this, my hematocrit actually was up 3 days ago (unfortunatly, so is my blood pressure.)
Soooo...I'm taking the next week off; postponed anniversary dinner with hubby (23 yrs) and eat rice with boiled carrots and ginger.
Any recommendations about supplements, part since I can't do much dairy? Have others had these symptoms come and go during chemo, or is this it for the next 12 weeks?
BUT, just to add SOMETHING positive, the swelling and redness in my fingertips is starting to subside; I'm no longer dropping every small thing I pick up.
I start round 3 on Friday, and for the first time, it's feeling like a long haul.
Thanks for the opportunity to vent. Judy, who is hoping to find another reservoir of inner strength

rdy2shop
Posts: 37
Joined: Apr 2004

Hi there, My husband is going through treatment, about halfway now. He has stage III rectal cancer. Its been very hard. He couldn't take 5fu because it gave him chest spasms, and he almost had a heart attach. He's on camptosar and oxaliplatin. He has 3 more months to go and they seem like forever. Hope you're feeling better..

aspaysia's picture
aspaysia
Posts: 257
Joined: Nov 2003

Judy, I feel for you, recognizing all the same nasty symptoms that visited me during chemo. It's a big draaaag! You are hungover without a party to remember. In my case the toxicity seemed to build up as the treatments wore on. The cumulative effects took longer to wear off. And soon ran all together so that I felt pretty bad most of the time. You begin to wonder if it is going to be like that for the rest of your life and what kind of existence is that? Have faith and believe that you will be free of the fatigue and funny tastes. Meantime just treat your body like it has the flue and don't eat anything you cann't see through. No dairy.
I used to doze on the couch in front of the TV with my crackers and ginger ale and got a nice cathode-ray tan. The brain cells used for reading were dormant and I could bearly hold up my end of a conversation with the dogs.
One year since my last session the hand/foot thing is gone except for my ususal lack of grace. I read all the time and not just trash--well, some trash but hey...I'm no genius. And my appetite is a little too good for my onc. He asked if I get ANY EXERCISE AT ALL???? Does staying up all night counts as a workout. I requested a tummy tuck from the surgeon who was also in the room. He doesn't look like he misses very many meals and told me not to be ridiculous.
Take it one day at a time, my friend. Don't get ahead of yourself. When this is over you will be so glad that you made it. I am proud of you and anyone else still in treatment.
Aspaysia, proud of her fat self for finally finishing something she started.

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Hey Judy,

What you are feeling I think is pretty normal. About half way through my treatment I got SICK and then got sicker as the chemo kept accumulating. BUT, it does get better. I finished my last chemo last July 2003 and right now I feel pretty good. I still have those memories of vomiting, diahrrea, intestional pains, gas, bloating, general nausea all the time, fatigue, fatigue, and more fatigue, headaches, I guess you name it and I think I felt it, but you must hang in there. It will be over soon.

As for being down and depressed, I guess that goes along with it all too. My gosh, look what you are going through, the sickness, fear, anxieties. Who wouldn't be depressed. Have faith in GOD, he will help you get through this. If that is not for you, have some close friends come by, play simple cards games, watch movies, but keep your mind busy. If that doesn't help, ask your doctor for some assistance. There are some mild anti-anxiety drugs with few side effects now on the market. If you appetite needs a boost the doctor can give you something for that too - believe me I know. I couldn't eat anything and kept losing weight - well when I finished with my chemo I was 15 pounds heavier than I was when I began! Ha!! Now I'm struggling to diet. Give me a diet any day as opposed to chemo!!

Hang in there Judy. You will be feeling better soon. Keep in touch.

alihamilton's picture
alihamilton
Posts: 344
Joined: Jan 2004

Hang in there Judy. My husband felt the effects of the leuko/5FU more during the first few months but, as time went on, he felt them less. He also loses his sense of taste but eats nevertheless. Imodium is wonderful stuff for the diarrhoea! He could not take supplements as they gave him terrible diarrhoea and he also has to stay away from vitamin K as he had DVT.But why not try a little at a time...you may be able to tolerate some and it will help you maintain your weight. If not, just try and find things that you are able to eat, if not enjoy.

It will be over soon...it is amazing how quickly the months of treatment pass. Good luck to you!

livin
Posts: 319
Joined: Jan 2003

Hang in there things will get better. I had Leuco and 5 FU for my Colon Cancer but I did not get sick gained 30 pounds ate everything just didn't like the taste of my favorite soft drink Pepsi. I drank Gatoraide by the gallons and Water which I never cared for. I was given meds for nausea and diarrhea which helped. How about some on the non diary supplements we give the patients. Since I had Chemo I can't remember to much of nothing anymore. Its either Chemo Brain or Iam getting older.I tell you. Iam only 49 but some days I remember or it dawns on me later that I was told to do something or had something to do. The only thing I had happen while on these meds was lose my hair. Thanks for your reply to my thread. Livin

KrisS
Posts: 232
Joined: Apr 2003

Judy- My taste is pretty bad and has been through most of my chemo. When it first happened I felt miserable. I cruised the grocery stores experimenting by buying little bits of things that I thought might taste better. There are some things that you may find by trial and error that taste closer to normal. After a while I got more used to it and found that it still felt good to have a full stomach. If you also are feeling pretty nauseous at the same time that gets very tough. If that is the case, I would lobby your oncologist for other antinausea drugs to try.

Hang in there,

Kris

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

Judy: I don't understand-you say you ffinished round 2, but that you have had 11 treatments? Does this mean that you didn't get it right the first time and you now have to do it again?
Boy, can I relate..they give me stuff to keep me from being sick, and the side effects of the anti-nausea drugs is nausea..I dunno..
One thing I've discovered is root beer-especially
henry Weinharts; it seems to go down and settle my stomach when nothing else does.And,you might try a
liquid B-12 dietary supplement called Vitamin B12
Complete by Nature's Sunshine..I get it in a local Herb shop, and it seems to give me a boost when I
get tired, which is often. It is a liquid, and you put a few drops under your tongue.
Today the lab tech couldn't get the blood to flow-she said it had something to do with the dead cells sluffing off from the chemo.
I have given up on trying to adjust meds/doses..the last time I asked the nurse about side effects and meds, she asked me if I knew of anything, and said that often the patients who are on line get the infor on new drugs before they do..wha? Bud
and the beat goes on-each time side effect get a little worse-(whine, vent, poor me, etc.)

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

Thanks to all who have posted. I got a call from my onc's office with reports that my potassium is very low, despite my banana a day. Took some potassium supplement immed. The onc feels that muscle fatigue may be related to low potassium, but is unclear abou the other effects. I see my PCP on Wed to prob change blood pressure meds. Sure am keeping the local medicos busy around here.
Surprisingly, I am liking ginger with many of my meals. My craving for root veggies, part squash and carrots, may be driven by low potassium, too. What a journey; and I was always someone who took my good health for granted. Live and learn. Thanks again, Judy

nbalantac
Posts: 29
Joined: Nov 2002

Judiths,
Reading your message reminds me almost exactly what I went through during my treatment. (see website for details). Like you, I completely lost my apetite but one thing that I do good is eat!. So much so that I actually gained weight (about 6lbs) during my treatment and I still carrying some of it today. I kept eating and eating because I know I need to sustain my healthy cells ( I call them my arm forces or soldier cells!). In our battle, the healthy cells need to be fed constantly to maintain indurance necessary to keep fighting against those nasty/bad cells even though food was tasteless and a trip to the comfort room followed shortly there after. Having some toasted bread or saltine type of crackers seem to settle my tummy before or after meal. Rice and baked potatoes with S/P to taste, use chicken broth instead of sour cream and butter (eating them slowly) are the two food that was really easy on my stomach and I drink soy milk (warm/hot even better!)instead of dairy milk. I knew in my mind that first, I need to stay healthy and the trip to the bathroom is secondary. Judith, this too will past away!. At the present, it's good to smell the food and taste it again!.
Fatigue?, oh yes it was a struggle for me as well. I am fairly active person and the least thing that I want to do is sit around in front of the tube. How do you fight fire?, with fire. For me even though I was feeling very tired, I walked around the house slowly whenever possible without overdoing it. This kept my blood circulating (adrenaline level is elevated) and it seem to rejuvinate my energy level. This too shall come to past. At the present, I am back playing my favorite sport, Tennis!. My team is a contender for possible League Championship birth next month.
Oh yeah, I believe in taking food supplements and I have been taking Multivitamins supplements since I was about 30 years old. Be careful, not all supplements are equal specially those that's been sitting in the retail store shelves. Vitamins have very short shelf-life as soon as they are extracted from its sources. This is an investment for my health and I get what I pay for (quality over quatity). E-mail me if you are interested in the type that I am currently taking.
All and all, during my treatment, it was missirable but tollerable. I kept telling myself (self-talk) that these too shall past away and there is no way I am going to loose this battle becuase my "old man" up there will take care of the rest.
Go ahead take the next week off and the next....and I am sure Mr. hubby would want to see enjoy and taste your food for your delayed gratification anniversary dinner later.
Keep fighting and you can let it out anytime!!

Strength and Honor,
Noel

4mykids
Posts: 33
Joined: Mar 2004

You may also want to try some calorie supplements like Ensure. My appetite eventually came back even while I am still on chemo, but when I was having trouble I drank Ensure. It really doesn't taste bad (I like the chocolate), and it comes in a small can. I was surprised at how full it made me feel after drinking it. It is packed with calories, and I found it to be a great supplement until I got back on track with regular eating habits. Good luck!!

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