par for the course with chemo?
I guess now that I've got the title down I know the answer is going to be "yes" but I'm going to write my questions anyway.
I had my 4th and last A/C 11 days ago... so I'm on the rebound but still dealing with fatigue, mostly. I know that's normal. But I'm suprised about my appetite/stomach issues... mainly, that I usually have no appetite (although it occassionally kicks in), almost nothing looks, smells, or tastes good, and on the rare occassion I fix something I think I'm going to enjoy, most of the time it tastes not so great to me.
The only things that I enjoy now are whole-grain toast (with cinnamon -- that tastes soothing to me), eggs, beef, and most fruits. And oatmeal, but I rarely have the time/energy to fix that (I hate instant cardboard and make the from-scratch stuff). Even soda crackers taste awful to me now.
Hardly a balanced diet.
So is the loss of appetite/nothing tastes right normal with A/C? I really had relatively little of that until this last treatment but now it seems stuck like glue to me. I start Taxol and Herceptin in 10 days. Will my taste and appetite continue to be low for the duration of Taxol?
I'm feeling tired (up and down with energy, too -- one day I feel relatively ok and the next all I want to do is sleep all day... I've already accepted that this is the way it's going to be for a long time, but it makes me want to cry). Feeling tired makes me cranky and whiny and irritable and teary.
So tell me it's all normal, chin up, all that good stuff, and I'll move into a more accepting place and quit whining.
I'm just weapy and tired and not dealing with it well. Thanks for listening and for making it this far 
Hugs to all of you.
Carol
(edited to shorten)
Comments
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Carol, the appetite thing is normal and temporary. I had taste changes, and after each treatment found new things I couldn't eat. However, I also found that some stuff I couldn't eat after one treatment I could eat after another.
I'm now 8 1/2 weeks after my last chemo, and most of my taste has returned to normal. There are still a few things I can't eat, though, and I still don't have much appetite.
Leah
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Carol,
What you are describing is pretty much normal I think for A/C. I just finished the taxol and am getting herceptin every 3 weeks for the next year. I am hungry all the time and nothing tastes good to me except mustard and mint ice cream. I didnt fare very well on the taxol. A/C made me feel like I got hit by a truck after the steroids wore off in 2 days. But I got a very bad UTI when I started T & H. and I am still getting the tell-tale side effects from A/C. Now that I am finished with the taxol my finger/toe nails are falling off although my hair is growing in. But it is snow white. I just told my grand kids that their blonde grandma was a thing of the past. But I feel 100% better just 6 weeks off of taxol. Nothing tastes good but I am back to work full time and starting to rebound. Just hang in there. I had to compartmentalize my treatments: surgery, A/C, T&H, now starting radiation, just so I could mentally get through all of this. As I finish each one I am so proud of myself because I really didnt think I could do it. I cried every time I had to go for A/C knowing I would be sick for a week. Hope this helps.
Good luck to you Carol!
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Thanks, both of you. I'm so glad you shared. I didn't fare as badly as you did, MsDeb, with the A/C, but it hasn't been a picnic, either. They keep telling me ("they" being just about everyone from the oncologist to other bc warriors) that taxol will be a walk in the park after the A/C. We'll see
I think the fatigue is getting to me extra hard today and affecting me all over. I just took a shower and cried the whole time I was in there.
I'm walking around bald and ok with it -- but today, I'm sick and tired of it and want my hair back! I have a port -- and I just want to rip it out! I just want this cancer to GO AWAY! I want to be able to look for a job! I want to be able to go for walks every night again! I want to have energy, feel like laughing, go out with my friends... instead of being so tired that all I can do is rest. I know, I know, it's what I have to go through. I'm just having a bit of a meltdown. Now that I'm 2 1/2 whole months past diagnosis (is that ALL???) and over the shock, I think maybe it's hitting me that this is a long haul, that I'm not so brave and tough, and that I just want this to be over. More emotional stuff, exacerbated by fatigue.
I know this is old stuff to a lot of y'all. Thanks for letting me rant and whine.
I think I need to cry some more... it's always a good release. Carol
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I agree with the others --- it is totally normal. I felt like some pregnant woman with cravings for things I had never craved before (like hot dogs, of all things!!!!), and couldn't take the smell of things I used to love! Funny, but I also loved toast with cinnamon, oatmeal, cream of wheat, etc.
I kept wondering what it was that triggered likes and dislikes, etc. I finally figured out that I could not stand things that had mixed flavors or mixed seasonings. For instance, spagetti sauce. Too many different tastes in there. The same with stews, soups, etc. Plain rice with a little butter was fine. Same with a potato. Just don't put butter, sour cream, etc., etc. on it. Too many tastes at one time.
I became the queen of cream of wheat cereal. For a while, my stomach was so bad that that was all I could stomach. One of the chemo nurses mentioned Carnation Instant Breakfast drink, and that became my lifeline. I could stomach that!
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Nelia, thank you for mentioning cream of wheat -- I bought a box on my way to work and made a bowl and it tastes heavenly!! Now I have a fall-back food in addition to toast! Thank you, thank you, thank you!
Maybe I wouldn't mind the lack of appetite if I were actually losing a few pounds
(I know, that wouldn't be healthy right now!) but, although I've gone down maybe 8-10# in the last 2 months, that's all I've lost. As little as I eat I feel like I should look like a bird (or a heroin addict, to go with my black-sunken-circles-under-the-eyes! -
NatureGrrl: I too am in Indiana...where do you go for your treatments? I'm with you...just want this CANCER to be OVER!!!!! (((HUGS))))
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White929, I'm in w. central Indiana (if I say "Go Boilers!" does that give you a clue?
) and go to Horizon Oncology -- Dr. Harb -- in Lafayette. Everyone says this year of everything will go by quickly and it'll all be behind me, but right now it feels like it's taking forever.
Hope your own treatment is going well. hang in there! We can do this!
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Hi NatureGrrl, I'm also halfway through treatment and hating it. Somehow we have to get through it...
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Hey NatureGrrl, have you tried microwaving instant oatmeal. It's pretty easy to do. I haven't started my Chemo yet (July 6th is THE day) but have been having trouble with appitite already. Doc said it was nerves. He gave me some good meds. and it helps. Do ya all like Grits??? I like them with a little butter, oh heck, alot of butter, and Mrs. Dash.
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My sense of taste was OK with A/C. But taxotere was another story. I called it the Proctor and Gamble diet because everything tasted like soap. I choked down one chocolate milkshake a day, and that was all I could manage. It is temporary, and sadly all the weight I lost came right back when I was done with chemo. ;-)
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Oh, Mary.... soap.... bleeeech!!! That would be hard to handle. No taste is bad enough! but I can't imagine things tasting like soap. Awful.
PauldingMom, I LOVE grits. With butter. Or with fried eggs and sausage, all chopped up and mixed with the grits (I know, gross, right? and not healthy! but my granddad ate them that way and I love it! yum!). My mom is from S.C. so I've been exposed to (and delight in!) a lot of that good Southern food. And cream of wheat is a lifesaver! I just don't like instant oatmeal -- I can eat it but it really does taste like cardboard to me. I like old-fashioned oatmeal, slow coated until the oats break down a little and it's nice and creamy. Yum! (Gosh, I can sure talk about food, even if I can't eat it!)
And, I know all about nerves, they get me every time, and with a new chemo coming up I'm sure I'll be taking atavan the night before. What treatment are you getting? It'll be OK; hang in there... It won't be fun, but don't let people scare you any more than you can help. I don't know how many people told me I was going to be "SO sick!" with the A/C (how are comments like that suppose to help?), to the point I was terrified with every treatment that their predictions were going to come true. Although it wasn't fun, it wasn't anywhere near as horrible as people said it would be. So hang in there.
Beth, we WILL get through it! All of us will.
hugs to all....
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Hi NatureGrrl and all. I start Chemo., Taxotere and Cytoxin on July 6th.
Today my General Surgeon said that he expected me to handle the Chemo. just fine. It's odd how one doc. tell me I 'll need to run around with a mask on and rubber gloves and another doc. just says practice good hygene and I'll be fine. Guess I'll have to find a good in between.
What are you favorite things to do when getting your chemo. I've been told it takes about 4 hours of sitting still. UGH!!! -
PauldingMom,
I've been neutropenic (sp?) with every A/C and bascially they said don't panic, just avoid crowds, use common sense, and wash your hands a lot. So that's what I did and I've escaped with no infections. If you were going to be on a plane or something you'd definitely want a mask but most of the time I think you're ok. But that's just my experience.
My favorite things to do during chemo:
read
sleep
meditate/pray/whatever you do along those lines
listen to my iPod
crosswords
sleep some more
I thought I might knit but I usually don't want to do anything that takes that much energy and attention. Also, there are TV's with all the infusion chairs but I've never used them -- but it's nice to know they're there.
Even if you aren't cold natured, you might want a sweater (even if they have blankets) -- getting that not-body-temp fluid dripped into you can make you chilly.
And although my oncologist provides snacks and drinks, I always take my own snacks in case what they have doesn't appeal to me.
You can unplug the machine and let it run on the battery and walk around a little bit if you get stiff. Sitting 4 hours can really put kinks in your body!
Looking forward to hearing what others like to do during chemo!
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Hi NatureGrrl
My sis had all the same stuff with her A/C she did dose dense 4 treatments q2weeks. She had horrible tastes, no appetite or even worse steroid hunger and nausea if you did eat. She needed hydration 2 of 4 treatments with immediate nausea, delayed nausea despite premeds galore - decadron, ativan, emend, compazine zofran and couldnt go potty without dynomite! Her tongue burned too and she started mouth sores but they never quite made it thank God. She also got Neulasta shots which made her feel like she got hit by a truck usually 2 days out. She was the poster child for A/C side effects
Good news is she is 100% better nausea wise with the Taxol and her taste is coming back - she tastes more and more stuff and the tongue hurts less and less (she uses Miracle mouthwash when its bad). The premeds make her pretty sleepy chemo Mondays but she generally can move around more the rest of the week -but not working - has some bone pain (she just finished 5/12_weekly). Surgery in September - hoping it has shrunk enough for lumpectomy. It has shrunk every treatment so far which is encouraging.Radiation to follow then I guess Tamoxifen.
During A/C she lived on eggo waffles - whatever works for you - go for it. It will get better!!!
God Bless. -
NatureGrrl-I 100% could have written your post. I think I have had 1 good day where I haven't had to lay down at least part of the day since my last chemo 1 week, 6 days ago. I go for my last AC tomorrow (I think the last part is the only thing getting me there). I still will be feeling down and nervous tonight knowing how I will feel for the next 2 weeks afterwards, then in 2 weeks start Taxol and see how that goes. At this point I can't wait for radiation!
After each AC I have had different cravings and have been able to eat/drink different things. After one infusion I would find something I could drink and then stock up on it and now I tell my husband he can drink it as it isn't working for me anymore and tastes like crap!
The nurses have told me I should do better with the Taxol/herceptin because my biggest symptom is nausea. Mine starts even before the 3 days of the Emend is up. Zofran and compazine don't touch it. The only thing that helps is taking 2 lorazepam every 4 hours and then that makes me sleep all the time, but still most of the time better than the nausea.
Hang in there and we will get through!
Dawn
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Carol - Hi, it's Linda and I am 5 days out of my 4th A/C and I feel disgusting. Since I too was neutropenic (first A/C, hospitalized), she cut my dosages to 85% for 2 and 3 and decided since I was doing so well, to up it for the last one. I have been sick as a dog since. Not as bad as days 3 and 4 but enough to make me want to find a hole and crawl in it. Hungry, then when I eat, I wish I didn't, no nausea, but constant queasy feeling, tired, and my God, the Neulasta shot this time has hurt me so bad in my hip area that I thought I was going to die. Sat at work all day Monday and literally cried. Got some hydrocodone that night from onc and it did jack sh$t. Today my right hip has stopped hurting but my left is still so sore I feel as though someone shot me in it and the bullets still in there! They tell me, oh, normal, just the red blood cells being made and trying to push out of the bone into bloodstream. I don't care what it is, it is absolutely killing me. After my 3rd a lot of my symptoms came and went but didn't feel well until the day before #4, so I am expecting all this crap to last until Taxol on July 9, which I am terrified I am going to die through. I hate this and if I didn't have this damn triple neg, I swear I would quit right now, but since it's all I have, I have to push myself to get it done. I am right there with you, feeling everything you are feeling and hate it too. I'd send you some cyber strength, but I doubt that I have any myself. Hang in there, babe.
Linda
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Naturegrrl: I'm at the tip of lake michigan by Gary Indiana. I start chemo Thursday...will check in after that. We will make it through this journey...even though it sucks getting there!
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While I'm not glad others are suffering, there is some measure of comfort in knowing I'm not alone....
concernedsis, your sister and I are on almost the same journey, right down to surgery in the fall, hoping the tumor shrinks enough for a lumpectomy, radiation... I"ll have herceptin, though. I'm really sorry she had such a hard time with the A/C (it sounds like she got what everyone told me I would get!) but glad the taxol is better. Give her a big hug and tell her she's not alone. I'm right there in her footsteps...
Dawn, I'll be thinking of you today. Wed. has been my treatment day, too, and I start Taxol next week, so we're also sharing the treatment timing pretty closely. I know what you mean about taste changing -- it's been different every treatment for me, too. Hang in there. For me the last A/C wasn't any worse than the third and for some it's better -- I'll hold those thoughts for you! You're almost past a huge milestone -- just get through today and you can make it through the rest! (Just keep the lorazepam handy)
And hey, Linda! If you dig that hole save room for me, I'll join you. Maybe we should just make it a group hole -- I think there are plenty of us who want to crawl in there right now! I'm really sorry you're having such a rough time, it breaks my heart... for some reason I can take my own pain and misery better in many ways than I can take that of others. I start Taxol July 8 so you and I will practically be holding hands in the infusion chairs. I'm terrified of it, but my mom breezed through it with her ovarian cancer and everyone tells me it's not bad, I don't know why I'm afraid of it except that it's another unknown. I've sat and cried plenty, too... it just plain sucks (pardon my French) when you hurt and are so tired you don't want to move and nothing feels normal any more. It's hard to remember that this will pass and we'll all be past it and doing better (doing GREAT!) and a year from now looking back on it all... but we'll get there. I have more energy than you do right now so I'm sending you lots and lots of cyber strength!! When I feel my worst the thing that helps me the most is remembering all the women that have gone through this before -- and I know if they can, I can. WE can!
And we will! Hang in there, everyone, and lots and lots of hugs.....
Carol
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PS White929, you can do this, too -- I'll be thinking of you tomorrow.
Do you get to the lake much? I lived by Lake Erie for awhile and loved to go there, walk the beaches, and draw strength from the lake... I miss not having that to turn to right now.
Do keep in touch, and hang in there!
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Thanks, Carol - i got your strength - I will use it well!
Linda
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Naturegrrl
I agree noone wants to hear anyone else is suffering either but it can be a consolation to know others have made it to the other side of this hell. Plus this forum has given us useful tips like the claritan for the bone pain of neulasta that the docs didnt offer but they helped alot! Take yourself where you are. Let people help - my mom bless her heart if great for support, optimism and a home cooked meal, I tend to be more concrete - following the bills online - yelling at insurance what do you mean you dont cover the $5700 neulasta shots, taking notes at the doctor, laundry, the weekly filling of the pill box etc - trying to plan short vacation between chemo and surgery to renew the mind and soul. I know when my sister is her usual PIA then she is having a good day and I can step back a bit and when she's not step backup to the plate. With God's help we'll get through this and so will you!
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Naturegrrl
I have lived three miles from Lake Michigan and the Indiana Dunes State Park all of my life and have found that I have not enjoyed it as much since I've gotten older. Until I was diagnosed. My son and my 3 year old grandson live with me and basically I'm raising my grandson. I took him to the beach last week and he enjoyed it so much I decided to buy a season pass. I am going to invest in an umbrella and take him alot this summer because it is so relaxing and beautiful at the lake. I have always taken it for granit before as I know that people come from hundreds of miles to visit this place. Thanks for the vote of confidence. I just went to the "It's A Wrap" site and called. They have tons of scarves to choose from and they run like $72! I was shocked at the variety. The lady told me to check them all out and call her back....you have to go to this site! I went to a "Look Good Feel Better" class and it was great! Lots of very nice expensive make up that I would not ever buy myself. I was thinking today about the not shaving with a razor thing. I know the hair loss will come about day 14....but do I do under my arms from days 2-13? I've never used an electric razor under my arms and it sounds weird! Don't think I can go 14 days without shaving my pits!
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What you're feeling is par for the course as others have said.
I'm finished with AC and have had my 3rd taxol (4th in 6 days but who's counting
). The AC was rough stuff to get through. I lost my taste and appetite - especially by the 4th treatment, almost nothing tasted good any more. Anything spicy or acidic gave me heart burn. I had mouth ulcers so I could only eat soft things. I always had either diarrhea or constipation - nothing in between. Despite all that, the fatigue was the worst for me. I remember the feeling of just wanting to cry because I was just so tired.
For me, the taxol has been so much easier than the AC. It's not a cake walk, but is much easier. I still get tired but not like the fatigue that I had with the AC. They told me my taste would likely still be bad, but for me it has come back almost completely to normal on the taxol. I still struggle with constipation and have to be really careful to get lots of fiber and drink lots of water. Otherwise it's been not that bad.
Hang in there. I hope the taxol is easier for you, too.
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Just a short reply today but I wanted to say hi... so good to hear from everyone. I'm still battling fatigue although it is slowly getting better. But tomorrow I start Taxol and Herceptin and am anxious about it, not to mention concerned about the fatigue *that* will bring. Well, onward!
c-sis, you're so great... I wish I had the kind of family support you and your mom are able to provide for your sister! I'm basically alone... taking care of my mom and her health issues, So I can appreciate how much help you are. You're right, we'll get through this!
White, my hair loss came exactly 14 days after my first treatment...it wasn't bad at first and I had already had it cut short but I went ahead and got it buzzed off so that I wouldn't have to deal with the handfuls of hair (and tears!). I shaved my armpits (and legs) with a regular razor until the hair stopped growing, which was around the time of the second treatment. Did your dr. tell you to avoid a regular razor? I know there's some slight risk of infection but my dr. only advised against shaving my head with a regular razor (to get rid of the stubble). Being your basic chicken, I left the stubble
I still have some scattered stubble but I hear the Taxol will take care of that! I'm trying to embrace the bald and don't wear hats or scarves much any more (too hot!) but I know I'll be really happy to have hair back. Enjoy the lake! I hope to get to Cleveland and a dear friend & Lake Erie this summer... I can dream, anyway!Laurie, your words are encouraging... thank you! I haven't had trouble with constipation or diarrhea and hope that continues... but I try to drink 96 ounces of water a day (am I sick of water? yes I am!)
I can handle some fatigue but, like you, sometimes it got so old and seemed so overwhelming that I did cry. I just want to be able to function semi-normally. I appreciate your experience and your sharing that... I'm in your footsteps.What I really really want is a genuine vacation... but any chance of that is months away and dependent on my brother to come stay with mom, so it's unlikely. So I close my eyes and dream about the mountains and the ocean... and maybe I'll sneak up to the Dunes one of these days!
Hugs to all of you. You help so much! Hang in there... we're doing this, one step at a time....
Carol
PS Did I say short?
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Hi NatureGrrl - Thinking of you as I read this thread and hoping that treatments are going fine. I wanted to let you know that I suffered terribly from fatigue, loss of appetite and hair loss when I went through cancer treatments. I started a blog that I hope can be a resource for you and other cancer fighters, and I just did a recent post on loss of appetite while going through chemotherapy (http://blog.cincovidas.com/i-have-no-appetite-on-chemo-tips-to-help-keep-the-calories-up), and one on hair care/loss (http://blog.cincovidas.com/not-my-hair-i-love-my-long-shiny-lockshow-do-i-care-for-them-during-treatment). Love, strength and survival, Britta
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Naturegrrl: yes,my onc told me not to use a regular razor only electric after starting my first tx...so i guess better safe than sorry....only four days left anyway
My hubby and I are planning to get away for 4-5 days to Chain o Lakes in Indiana...our 25th wedding ann is 9/29, so I asked my onc how many weeks between last tx and radiation...she said 3 so we are going to try to go around 9/10. We haven't had a vacation for 5 years...so I CAN"T WAIT!!!!! Talk about needing to get away! It will require me planning who will take care of my grandson (other grandma) and my dogs (mother-in-law can stay at our house).
Hope all are doing well!
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Naturegrrl
I hear you but I hope you have faith in your life then you are never really alone
Sorry your mom is ill also - sometimes focusing on someone else can lighten your burden - or make it suck worse I guess it depends LOL. Check with mom's insurance depending on her issues, maybe she could qualify for an aide or a day program or at least respite so you can focus on you? If you have friends that you feel comfortable asking for help please do - lots of time people want to but dont know how to help, be specific - please pick up my laundry, help me cook, hang out etc. Remember the American Cancer Society has programs that provide free wigs, transportation and support groups. Go to their Look Good Feel Better class - free nice makeup and some hands on how to hair, wig, turban tips - good fun! Good luck!!!!! -
Naturegrrl: Are you okay? Haven't seen a post from you for a while....Hope all is well with you! (((((HUGS))))))
Any triple negs on this forum?
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Hi, White! I'm doing OK -- just not having quite as easy a time this few weeks as I thought I might -- lots of extra stress with taking care of mom (had a horrible spell with arthritis and could barely walk for about a week but she's better now) and myself (SE's from the taxol I didn't expect, including lots of pain, steroid fluid retention, a CTscan to make sure I didn't have blood clots in my chest, you know, the usual fun chemo stuff!)
The good news is I'm hanging in there. I've posted some under other threads but have been trying to avoid starting new ones since I feel like I've been doing that a lot lately! How about you? How are you doing? Your trip sounds lovely -- bet you can't wait -- enjoy the anticipation! Still getting to the lake? How's treatment?Concerned, thanks for your words as well... it's a complicated thing with my mom and a REALLY long story, but she doesn't allow others into her house readily, it's been a real struggle. At some point she may not have a choice (it'll be, let me have help in the house or she'll have to go to a home) but for now it's ok, just not ideal. She's been up and down but at the moment is reasonably able to get around and do many things for herself; at this moment her issues are more memory and mental than physical, although at 89, and with cancer, as you can figure, she does have some physical stuff, too! How's your sister doing? How are YOU doing?
And Britta, sorry not to reply sooner, thank you for the links. Always helps to hear what others have been through and done! I hope you're doing well also -- you got hit young!
Hugs, all!
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Naturegrrl: Sorry to hear you are having such a time with your mom. I know what you are going through as I took care of my mom until she passed. I also took care of a 425 pound man who was like a second dad to me everyday for the last 7 years of his life. It can be draining when you are well....can't imagine trying to take care of mom and myself. LONG stories...I know all about those...people tell me I should write a book! LOL When the song "When you're going through hell...keep on going" comes on....I crank it up and sing and it boosts my esteem.
Hope you are doing well...keep in touch.
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