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Worst day(s) during cycle

Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

Hey everybody, just curious what everyone's worst days were as far as fatigue and malaise during their cycles? Today has been a doozy, I don't remember ever being so devoid of energy ever before. I sure hope it improves.

diazr1's picture
diazr1
Posts: 101
Joined: Mar 2012

For me

Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

That makes sense, this is day 4 for me and between my mouth and throat and feeling Unlike I've ever felt before( in a bad way) this is just peachy. I can't believe this is just my first treatment wow!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1211
Joined: May 2012

Aaron,

I honestly cannot recall days being "better" or "worse" at this remote point, but treatment has faded (with the help of chemo fog) into a "Jack Daniel's Haze." I do not recall the days just after infusion being harsher, I will say. Be aware that some happy, lucky folks will write that "abvd was not so bad," and the like. Usually, they did 4 or 6, or even fewer cycles. Twelve cycles is the most clinically recommended (I have never heard of more, and most do fewer), so be aware that you have to compare apples with apples.

Also, you will never get Prednisone on r-abvd. There is no "up" time on abvd. By around my 4th cycle, I was sleeping around 17 or more hours per day. But, sleep was the most pleasant part of my days back then.

I am not trying to be a downer, like some Neil Young ballad. I am just straight-up honest, while always noting that some people have a much easier time than others. My fundamental attitude is always hope, and I would do 50 cycles of abvd beginning tomorrow, if my doc said it was necessary. Like a sub on the surface toward the dive point, you just gotta hold on until the calm water down below replaces the rough seas of the surface, since a sub is not designed for travel on the surface. We are not designed to have a quart or more of abvd circulating through our veins.

Did you watch the series "24" with Keefer Southerland ? (My favorite tv series of all time.) He was a counter-terrorism agent, who had been through torture in Somolia and elsewhere. He would get captured occasionally and undergo torture, either with a blowtorch, or raw electriccal wires -- you know the stuff. But, no matter the severity, he would spit in the torturer's face, and tell them to go to hell. That was my attitude on abvd. If I could not breath from coughing, or feel my feet when I tried to walk, I would say to myself: "Go to hell, abvd. I will walk another day. You will not keep me down. Bring on what you got !"

We have to be tough. We have to be super-heros ! But mostly, I hope you feel much better tomorrow.

max

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Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

I'm truly looking foreword to that vantage point someday max but..... Here and now it's all too real. I do like the way you equated it to standing tall through torture cause that's precisely what it is. Take care max and keep the good banter coming, I love every Minuite of it. Aaron

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

Hi Aaron,
I felt totally depleted from the day I stopped the prednisone which was day 5 after chemo. Then the following 5 to 7 days I was very tired with achey joints. Usually by day 18(after chemo) my energy would get a bit better, but then it would be time to go in and do it all over again. With each round finished the good days usually came a couple of days before the next round. It had a cumulative affect on me...by round 6 I wasn't having any good days as far as energy goes. It does get better after chemo is finished, but it sure takes time. I'm still not where I want to be. Sue
(FNHL-2-3a-6/10)

Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

Yikes ! I'm in for a long six months. Btw thanks for the posting about Lisha, that was really cool.

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

as weird as this is going to sound, it will be over before you know it, everyone is so different as far as energy levels, the chemo knocked my blood counts down to zero, but even then, my body rallied back, keep being positive... Vinny

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

Hey Aaron,

I agree with everyone else and it is different for each person.
For me, once the prednisone wore off, I pretty much crashed.
My treatments were done over the course of 5 days, 4 nights in the
hospital. When I was released, I bounced for 2-3 days until the prednisone
wore off when I crashed and was pretty tired for about the next 5-7 days.
After that some energy returned (not full). I had about a week of being
a little on the upswing and then it was time for the next treatment.

Not to rain on your parade but the fatigue generally gets worse as
you progress through treatments. It may be different for you but my oncologist
told me this is generally the case. During the course of your treatments, it's
important to listen to your body and rest as much as you can. Your immune system
is weakened during treatment so you are more vulnerable. It's important to eat well,
get plenty of rest and avoid stress as much as possible. I think exercise of some
sort is good but you need to adjust for your condition and just don't overdo it.

I think you are doing well on your "chemo cruise" - so try to think of it as a
"cruise" (unwanted of course ;)). I primarily focused on getting through each cycle
and celebrated milestones like when I was 1/2 way through, etc. I tried to "work with"
expected side effects like losing my hair, etc. so I wouldn't have such a strong negative psychological reaction to them. I know I say it alot, but attitude and humor are
free weapons in this war. Laugh in the face of your enemy. Lord knows I don't have
any problems being a silly 55 year old kid ;).

You're going to have your good and bad days as we all did and do. You know we're
here for you to share both :). This will be over before you know it - just take it
one day at a time. I know I was so anxious to get it all over with.

Hugs,

Jim

Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

I appreciate all the encouraging comments, it's just been a rough few days. My mouth and throat are really hurting wich makes it tough to eat and drink enough and that magic mouthwash doesn't really do much. Hopefully the doc can give me something else to help with it. Thanks again everyone, I wasn't ready to feel the way I've been feeling and just needed to vent a bit. Aaron

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Aaron,
I hope you are different than me. While in treatment the P kept me up real late at night. What I remember most is that as the treatments went along the tiredness got worse. By round 4 I was totally out of energy. I felt like a bus had hit me and at times felt it ran over me and came back to double whammy me. By round 6 I felt like I was on my knees crossing the finish line.There was just no energy left to get back. It had built up so much with each treatment I was totally exhausted. There are a few others on here that felt the same way,but remember we are all different in the way we react to this.There was one person on here that said they had no real energy loss or tiredness at all. Believe me,he was full of it. He no longer post. John

ta8631
Posts: 40
Joined: Jun 2012

my worst is usually 4-6 days after treatment, coming off the prednisone is horride but doesn't usually last long. I am heading in for my 3rd cycle next week and am so blessed it hasn't knocked me down more. So far i have only had to take 3 days off of work every 21 days and mostly becuase of fatigue. I do feel like my energy level is dwindling fast but a 5 and 2 year give me no choice to be keep pushing foward :) good luck to you and just remember "you can do this" :)

anliperez915's picture
anliperez915
Posts: 756
Joined: Sep 2011

Hey John,
That damn bus is just hitting people left and right lol! I sort of got run over today, it only hit my legs though! Not sure how the next three weeks will go, I'm pretty sure that damn bus is gonna come back and do a double take on me too! Take care John for keeping it real and always making me laugh! (((Hugs)))

Sincerely,
Liz

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Liz,
It is the only way I know to explain the reaction. It honestly felt like a bus ran over me and dragged me down the road. It got so bad around the 5th treatment that I could have sworn it came back looking for me to drag me some more. It was terrible. I was having bad chemo brain with it as well. I was watching Jeopardy and usually get some of them right,but for some reason I could not even remember what they were asking during the 4th thru 6th treatments. Still think there is remnants lurking in there. John
OK Jim thats your Que to make a comment LOL

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

Aaron,

Here's a link that might help with the mouth issues I hope.
There are things you can do and mix up at home. Hope it
gets better.

http://www.ehow.com/how_2312969_manage-mouth-sores-from-chemotherapy.html

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1211
Joined: May 2012

Consider us the ceiling fan in the bathroom, or what ever you need, brother.

max

ThisisLife's picture
ThisisLife
Posts: 99
Joined: Jul 2012

Hi Aaron,

Thanks for inviting me over!
Are you feeling any better today?

Sharlene

Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

Glad you made it. I'm feelin a good bit better today thanks for asking. I'm at the park with my daughter having a picnic as we speak. I hope your day went well, how did the the first infusion go? I hope your doing well and I'm glad your joining us over here, your gonna love these folks!

ThisisLife's picture
ThisisLife
Posts: 99
Joined: Jul 2012

That's great Aaron. I'm glad that you are feeling better and it sure is a gorgeous day for the park!!

My youngest daughter (32) had the day off and want to come with, so my hubby went to work and I had a nice visit with my daughter. She has Crohn's disease (in remission at the moment) so though she doesn't know a lot about chemo protocols, etc. she sure does know her way around PICC lines, Central Lines, IV's etc.

My day went very well. Thanks for asking. I was a little bit nervous, but had a great chemo nurse and she made it a piece of cake. I don't know if it will continue this way, but I had no taste from any of the drugs. My PICC line worked like a charm. Didn't feel anything. I went in at 9:30 and was out just after 11:30. ABVD and prednisone (I only get the pred on the day of my chemo). I have something different for at home. . .prochlorperazine or I think it's also called Stemetil. She said the chemo nausea drugs will where off in 7 to 8 hours, so I'll be popping one of those little babies pretty soon. Not gonna wait until it's too late!

Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

Good, I hear if you wait too long it's mighty tough to recover. Just eat BLAND Sharlene, trust me you'll thank me for that later and keep rinsing with salt water and baking soda water ( around a .25 tsp each per 1/2 cup water) and sennakot. Hang in there my friend. You should consider starting a thread, the folks on here are so experianced, they are a godsend to chemo rookies like us.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

You may be a rookie,but remember you are playing in the Major Leagues now. John

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

You may be a rookie,but remember you are playing in the Major Leagues now. John

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

You may be a rookie,but remember you are playing in the Major Leagues now. John

Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

You ain't kidding John

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

Yeah, John. I think we should all get gold rings just for getting
through this! Of course I'd probably have to hock mine to help
with bills ;).

Aaron, hope you're doing better

Jim

Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

From feeling better than I have in a week to at the ER at 11 at night with a mystery fever that keeps coming and going. The coaster rolls on... I'll let y'all know what's up when I find out.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1211
Joined: May 2012

Aaron,

Two days after my uneventful first infusion I was admitted to the Oncology Ward at the local hospital -- my wbc had plunged. It will be one of the first things that they check you for, of course. (Neulasta later got everything levelled out, and this did not ever re-occur for me).

It was sort of funny in a way: The docs would say, "Chemo will cause your wbc to drop, and that may explain your fever. And, we have checked you for a dozen infection strains, and all are negative, but we are going to keep you here, just in case."

The whole while, they were pouring antibiotics into me, "just in case." I received so many antibiotics that I got an allergic reation, "Red Man Syndrom," with hives. It was horrible, and took five days on steroids to clear up.

The whole thing was wbc-driven, never with a sign of infection. After three days of "just in case," they released me.

Do keep us posted,

max

.

Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

They said my counts looked fine and no sign of infections so they sent me home. I'm getting ahold of my Onc tomorrow for good measure.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1211
Joined: May 2012

Excellent ! You dodged the three-day waste of money that I went through.

max

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1211
Joined: May 2012

Is it me, Aaron, or are you not off to a velvety-smooth start with this thing ?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1211
Joined: May 2012

Aaron,

What's new? No word from you in some time.

max

.

Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

Ive been feeling pretty good for the last few days so the family's been keeping me busy. Besides, you know me I need something to bit$& about. Did you convince your friend to go to the v.a. to get looked at yet? It sure sounds like he needs some seeing to. Sure hope he doesn't have lymphoma, this crap sucks. Hope your doing well my friend and not working too hard in that carolina heat and I'll be back to pissin and moanin about something in no time ;). Aaron

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

I'm glad you're feeling better.
Who pisses and moans here? LOL ;).

You have a good attitude - you know how beneficial that is!
I think things will be better for you as you learn to "tweak"
during this process. The mouth issues better? Don't overdo
your activities - remember you need to rest even if you don't
feel like it sometimes.

Jim

Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

That is a lesson well learned for me this weekend Jim. I'd be going along like normal and before long I could feel my legs start to weaken and I would feel a unfamiliar type of tiredness come on. As far as the mouth thing I sure hope I figure out a few "tweaks" cause so far that has been the worst part.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1211
Joined: May 2012

Aaron,

Thanks for the update. I never had energetic days, so it must speak to your strength.
I am going to call my supervisor at work tomorrow (Wednesday), and see what has transpired regarding his night sweats.

Man, I never viewed you as a "whiner."

I did 25 days in ICU in 1986, after going out of the window of a car, which then rolled over me, and then it took about a year more for me to re-learn how to walk. I went from around 150 to around 100. I would tell folks face-to-face about my experiences, and when when they started crying, I always realized that I had gone on too long. I feared that I was "complaining," and many times I would ask if I seemed to be whining. Every time, they yelled "No ! No man ! I just can't fathom all of this," etc.

Ergo, speak your mind. It aint whining.

max

.

AngeH's picture
AngeH
Posts: 15
Joined: Jul 2012

Ugh... I know that I'd always felt like I was a whiner before only because every time I turned around I was sick with something, or something wasn't right. It seemed that as soon as I got over one thing, something else would happen. While getting the lymphoma diagnosis and my other issue finally no longer misdiagnosed wasn't "great" at least then I finally felt justified for whining. LOL!! I still feel like I'm whining if I complain about not feeling so great, or just not feeling right from time to time. It's not really been all that long since my last round anyway, so maybe I'm allowed a lil bit.

But, then I get the "you've been doing this or that" and having all this energy back so fast, that I just sometimes feel like others won't "allow" me to have a down day or not feel well for a bit. I'm the type that keeps running until I'm totally wiped. I'm about there now. LOL! I jumped back into full time work, and this past weekend was SO busy! I am feeling it now. Ugh! So, tonight I took a night off my usual park walk, and not so motivated to get the clothes and aquarium done, and it's 9pm already! Where did the day go??

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1211
Joined: May 2012

Along with Aaron, I dub you an official non-whiner!

Crushed in a car crash, lymphoma, and now possibly looking at both Parkinson's and an organ failure (not certain, and not cancer related).

My fundamental attitude is thanksgiving to the On High.

max

Aaron's picture
Aaron
Posts: 241
Joined: Jun 2012

You better not be having no organ failure sir, your way to salty of an old sailor to let that happen my friend. As far as the whining thing I was just throwing out some of my well known and often annoying self deprecating humor, its been known to fall flat from time to time. That said I think WE ALL have every right to piss and moan about how tough life can be.... The fact we don't speaks volumes to me about th character of the fine individuals that frequent this forum. Stay strong max and tell your organs failure is not an option! Aaron

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1211
Joined: May 2012

I went for labs for my family doc, called three days later for results, and he is "gone for two weeks vacation." I guess I will hear something by around next Tuesday or thereabout. The nurse who took my call did tell me that I was negative for Hep C, which was one of the concerns. So far, so good. It may be good news on Tues (that rhymes !).

I do not want to wander off of the lymphoma track, but will keep you personally informed.

Your jokes are the best, always.

max

Folks24
Posts: 104
Joined: Feb 2007

My symptoms also hit me after the 5 days of prednisone. I'd say maybe 2 days afterwards. The duration they last I found varies.

The 3rd chemo hit me much harder than the first two (I'd say 1-1/2 wks of feeling crummy.) : fatigue, tummy issues, muscle aches, wobbly legs and lost weight. I'd get up, go to a room, sit down, do what I needed, sit down, and then return. I had a volunteer drive me to the onocologist as I didn't want to trust my driving. I got through it though and gained back the weight. I have my 4th chemo this week so hope symptoms are not as bad. I had one dr say cumulative and another say the 1st chemo symptoms were the worse so I guess maybe it is different for everyone? I am just happy dr said chemo is working!!!!!

Dr had a therapist come out to "access" me and by then I wasn't as bad but my balance was off so I got exercises to help. I also finally did get a home helper in for 3 hrs and she caught up on all my physical house stuff that in my shape then would have taken me days to do. Cleaned bathroom, cleaned kitchen dishes & countertops, recycles out, sponged all floors and vacuumed carpet.

So don't be hesitant to call and get help if needed. Also stock up on foods that are quick to fix like soups, beef stew, 12" plain sub you can eat a bit at a time, Gatorade, etc.

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