Worst day(s) during cycle

Aaron

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

Day 3-5
For me

Aaron

diazr1 said:

Day 3-5
For me

That makes sense, this is
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!

allmost60

Days 5-10
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

allmost60 said:

Days 5-10
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)

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

vinny59

Aaron said:

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

it will be over before you know it!
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

Chemo Cruise
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

Max Former Hodgkins Stage 3

Aaron said:

That makes sense, this is
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!

Worse day ? As opposed to what ?

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

.

Aaron

jimwins said:

Chemo Cruise
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

Thanks y'all
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

Aaron said:

Thanks y'all
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

worse days
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

COBRA666 said:

worse days
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

4-6 days
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"

jimwins

Aaron said:

Thanks y'all
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

Mouth issues
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

anliperez915

COBRA666 said:

worse days
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

Damn Bus!!!
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

Aaron

Max Former Hodgkins Stage 3 said:

Worse day ? As opposed to what ?

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

.

I'm truly looking foreword
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

ThisisLife

Feeling Any Better?
Hi Aaron,

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

Sharlene

COBRA666

anliperez915 said:

Damn Bus!!!
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

The Bus !!!!
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

Max Former Hodgkins Stage 3

Aaron said:

Thanks y'all
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

Vent

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

max

Aaron

ThisisLife said:

Feeling Any Better?
Hi Aaron,

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

Sharlene

Hey sharlene
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

Aaron said:

Hey sharlene
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!

That is awesome!
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

ThisisLife said:

That is awesome!
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!

Good, I hear if you wait too
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

Aaron said:

Good, I hear if you wait too
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.

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