okay is this a "normal" side effect or is this reason for concern...
and also...she is having a port installed 6 days after her chemo..good idea? im afraid 6 days isnt enough for her to recover somewhat for the outpatient surgery...cuz they managed to misinform us about the port situation, hence its 1 treatment late. So is this a surgery that will hamper her even more??
thanks again!!! and wish the best for everyone...im really comfortable asking you guys now more than ever..
Comments
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sleepiness is normal
Hi,
Yes, sleepiness is a normal and expected side effect of your mom's chemo. When I had Folfox and Avastin (is that what she's on?), I felt like I was in a sleepy fog most of those six months. More recently, when I was on Folfiri and Avastin, I also would get quite sleepy, but not anywhere near how sleepy I got when I was on the Folfox. I believe the oxaliplatin was the culprit. When I took radiation, I was even more sleepy.
I still get sleepy and need to take naps a few times a week. This being tired is really quite extreme, also.
Take care and I'm praying for your mom-
Lisa0 -
Yay for the soup
I am only guessing, but I believe the tiredness she's experiencing is normal. I'm sure some of the other survivors who've had chemo will pipe in soon.
I'm glad to hear your mom is able to eat some of the soup and crackers you got. You're doing such a lovely job of taking care of her.
*hugs*
Gail0 -
Normal
I remember being thinking I would never get out of bed again when I was on chemo. It became a routine for me... Chemo Wed, Thurs, and unhook 5fu pump Friday. I would have insomnia on Wed, sleep thurs, friday, and most of Saturday; back to functioning pretty well on Saturday night or Sunday morning. God Bless my mother-in-law, I think I would have starved if it weren't for her constant "nagging" to get me awake enough to eat something during those days. Appetite will be low as well. Nothing tastes right and will probably make her sick as well. Find the things that she will be able to eat and enjoy. Try to get her to drink as much water as she can, though it's hard.
I'm not sure about the port install... my cancer was nearly 5 years ago, but I remember them saying that I could have chemo the same day that the port was installed. It's a fairly small incision, so I would think it will probably be ok. It's good to ask, though. The port is definitely the way to go, though.0 -
Some of my best naps....
Were during and after chemo. The anti-nausea drugs are real yawners!
But yes, I, too did a BUNCH of sleeping...I liked to think of it as a way that my mind gave my body full control...so it could do the best fighting...
As far as the port...well, mine was installed 2 hours BEFORE my first chemo...and they used it to administer. I never had a trouble with mine, thru both cancers, until the very end, when it was just left in for insurance (in case I got a lucky THIRD cancer...lol). The day I had it removed, it was such a relief...I said I couldn't get cancer anymore...but it served me well.
I suggest talking with the surgeon about your concerns. It is a very short procedure. Not even 'real' anesthesia...just conscious sedation like a colonoscopy (at least all of MY colonoscopies...lol...I have seen quite enough of my innards, thank you so much!!!).
Hugs, Kathi0 -
Agree with allKathiM said:Some of my best naps....
Were during and after chemo. The anti-nausea drugs are real yawners!
But yes, I, too did a BUNCH of sleeping...I liked to think of it as a way that my mind gave my body full control...so it could do the best fighting...
As far as the port...well, mine was installed 2 hours BEFORE my first chemo...and they used it to administer. I never had a trouble with mine, thru both cancers, until the very end, when it was just left in for insurance (in case I got a lucky THIRD cancer...lol). The day I had it removed, it was such a relief...I said I couldn't get cancer anymore...but it served me well.
I suggest talking with the surgeon about your concerns. It is a very short procedure. Not even 'real' anesthesia...just conscious sedation like a colonoscopy (at least all of MY colonoscopies...lol...I have seen quite enough of my innards, thank you so much!!!).
Hugs, Kathi
After my 2nd treatment, I felt like I slept hard for 4 days. It was a deep sleep much of the time, too. I've not done that with any other treatments because I try to keep active from the start.
Agree about the port. There's only a small slice on the collar bone area and my cut was glued shut. The port is on top of any muscle and Mom might be sore for a few weeks. I was. If I tried to sleep on the opposite side and my arm 'crunched' onto that area... but it quickly passed and I forget I have it now.
The port makes things so much easier! Even when Mom is getting chemo, she won't be able to SEE the port easily so it's sort of 'outta sight, outta mind'.
Have a HAPPY, laughter filled day with Mom, Marc! Put in a funny movie, make a fun snack and LIVE!
Diane0 -
Normal side effect
I'm not sure what your Mom is taking, I was on Folfox/Oxi and after my first chemo I think I slept for almost two days. There were times my husband would stand over me and watch me sleep just to make sure if I was breathing. I never sleep like that, at least not since I was a teenager! LOL After that I didn't sleep much, I just had the fatigue in my body. As far as appetite, I had none what so ever! I would have been able to go days without eating but I knew that I had to put something in me. That's when I turned to comfort foods,ie, mashed potatoes, pasta, cooked cereal.I seemed to have no appetite, but I craved sugar, which normally I don't use. I lost 20lbs which I love because before that no matter what I couldn't seem to lose any weight. Less than 1 month after chemo that appetite came back with a vengence and I have put back all of the 20 lbs in 9 months! But everyone tells me I look healthy so I guess thats good. Having the port put in isn't major, you are just given something to relax you. I was awake thru it all, both having it put in and taking it out. I was sore after being put in but a few Tylenol helps that. I had my first chemo 2days later and it was pretty sore, but nothing that was horrible. Most likely by the time your Mom is ready for the next chemo she'll be feeling ok, anf if not I think there is something they can spray on it that makes it easier or they can ice it. Good luck to your Mom she must be happy to have such a concerned and caring son.0 -
fatigue
It's normal to be very tired while on chemo. Fatigue is a different kind of tiredness. If you have ever sat in the hospital all day with a loved one and left so tired you couldn't function, it's like that. I had a mediport and I was glad I did. It's a procedure that shouldn't be difficult, although it will be uncomfortable for the first few days. Pain relief will take care of her discomfort. She won't have any bood drawn or IV's anymore in her veins. It will all be done thru the port. They also can do chemo 24/7 thru the mediport also. Take care.0 -
yup..tiny one said:fatigue
It's normal to be very tired while on chemo. Fatigue is a different kind of tiredness. If you have ever sat in the hospital all day with a loved one and left so tired you couldn't function, it's like that. I had a mediport and I was glad I did. It's a procedure that shouldn't be difficult, although it will be uncomfortable for the first few days. Pain relief will take care of her discomfort. She won't have any bood drawn or IV's anymore in her veins. It will all be done thru the port. They also can do chemo 24/7 thru the mediport also. Take care.
she is sleeping alot and she can't help it...but its nice i can hear some stories that this is somewaht normal...i like how she still conscious that she needs to keep eating so she stands up once in a while or I call her, and she tries to really get food in her..then off to bed/watching tv...its odd cuz im used to seeing her active and lively....i hope that comes back..miraculously the leg pain has gone a way for a bit, not sure why, but i hope its a sign of good news later down the road after all the treaments...wish you all the luck, and some of u really gave me good tips on what to get her, i literally think blank and i think of this forum and go, hey she said to get like soup..or pasta...so thanks a bunch!!!0 -
Glad to helpmarc24 said:yup..
she is sleeping alot and she can't help it...but its nice i can hear some stories that this is somewaht normal...i like how she still conscious that she needs to keep eating so she stands up once in a while or I call her, and she tries to really get food in her..then off to bed/watching tv...its odd cuz im used to seeing her active and lively....i hope that comes back..miraculously the leg pain has gone a way for a bit, not sure why, but i hope its a sign of good news later down the road after all the treaments...wish you all the luck, and some of u really gave me good tips on what to get her, i literally think blank and i think of this forum and go, hey she said to get like soup..or pasta...so thanks a bunch!!!
We're glad to help Marc, and we'll be so glad to keep hearing updates about your mom. Hope to hear some great news soon!
*hugs*
Gail0 -
The good and badtootsie1 said:Glad to help
We're glad to help Marc, and we'll be so glad to keep hearing updates about your mom. Hope to hear some great news soon!
*hugs*
Gail
The bad news is that so many of us are here because cancer has touched our lives, being a survivor, a caregiver, or sometimes both.
The good news is that we have all found this site and have found ways to pass along our knowledge about what has worked and not worked for all of us. It was truely a blessing to me when I found this place.
You have to remember that while she is taking chemo and it is killing the cancer (bad cells) or what remains of the cancer, it is also killing good cells. Her body is going to need massive amounts of time to heal itself from the surgery and the chemo.
It is now her time to rest and heal from the cancer, the surgery, and now the chemo.
I wouldn't worry too much about the amount of time sleeping. Focus on the good days (yes, there will still be plenty of good days). Also, don't be alarmed when after her final treatment she doesn't bounce back 100% (I know this is looking way to the future, but it took me by complete surprise and nearly sent me into a depression). It takes the body a while to rid itself of the chemo and completely heal.
Let us know how mom does.
Thinking of you and your mom,
Tricia0 -
some good news, at least for the weekend ...
Thanks again for all your info..really helps..basically 3 days in after her first chemo, my mom was still dog tired and sleepy..then the 4th day came in around afternoon, i noticed she wasnt sleeping as much..then later that night, she was feeling much better. This morning, 5th day after chemo, she is pretty much about 95% back, obviously i asked her to keep things on an even pace to let her body recover, but next thing you know, she did a full load of laundry and was laughing alot with the friends that visited her. SO i asked her if she feels better, she said, she felt like nothing happened and she was completely shocked with how much more energized she is now based on say 2-3 days ago...hope it continues till her next treamtnet on may 4th, but for now, its some good news that although its her 1st chemo, her body seems to be strong enough to take the early onslaught..so im crossing fingers till may 4th that she fully recovers to take the 2nd chemo..it gets harder huh??
but thanks again!0 -
Actually, the first one is the hardest usually....marc24 said:some good news, at least for the weekend ...
Thanks again for all your info..really helps..basically 3 days in after her first chemo, my mom was still dog tired and sleepy..then the 4th day came in around afternoon, i noticed she wasnt sleeping as much..then later that night, she was feeling much better. This morning, 5th day after chemo, she is pretty much about 95% back, obviously i asked her to keep things on an even pace to let her body recover, but next thing you know, she did a full load of laundry and was laughing alot with the friends that visited her. SO i asked her if she feels better, she said, she felt like nothing happened and she was completely shocked with how much more energized she is now based on say 2-3 days ago...hope it continues till her next treamtnet on may 4th, but for now, its some good news that although its her 1st chemo, her body seems to be strong enough to take the early onslaught..so im crossing fingers till may 4th that she fully recovers to take the 2nd chemo..it gets harder huh??
but thanks again!
Because you don't know what to expect, and when you will feel better...and IF you will feel better...
A routine set in for me, and I always knew that I was going to feel lousy till day 6....and then, my life was handed back to me...
Tell mom to take care with germs....day 10 is usually the 'low' for white cells...but I felt fine during this time...just shied away from crowds, etc...
Hugs, Kathi0 -
Yep!KathiM said:Actually, the first one is the hardest usually....
Because you don't know what to expect, and when you will feel better...and IF you will feel better...
A routine set in for me, and I always knew that I was going to feel lousy till day 6....and then, my life was handed back to me...
Tell mom to take care with germs....day 10 is usually the 'low' for white cells...but I felt fine during this time...just shied away from crowds, etc...
Hugs, Kathi
It always took me 4 days to start feeling more energized after chemo, I am always tired right after they take the fanny pack off, but once the 4th day comes, I feel much better too
0 -
...now i wonder...Shayenne said:Yep!
It always took me 4 days to start feeling more energized after chemo, I am always tired right after they take the fanny pack off, but once the 4th day comes, I feel much better too
i c...yeah i think my mom got hit with about 4 days of just plain sleepy/tired side effects. See we have 2 so-called experts that we heard from. One is the guy who saw the tumour during the colonoscopy, the other is our oncologist. The 1st guy is horrid at breaking and making news, he is oretty much mr. negative, although direct, still i dont like him. I ask him plainly how long till my mom will start getting weaker and weaker and he said about 2-3 months...its been 1 month after his prediction, mom has been in 1 chemo, so im hoping she doesnt fulfill that guy's prediction. He also told my dad directly she has 1 yr...the onco said she has 6 to 20 mos...but as the treatments go and as the days go by, i really believe now that it is really up to the person's body and reactions..and i hope to have the mom that has the courage and determination that all you guys have here....1 month ever since i joined this forum when i learned that my mom has stage iv...1 month has been up and down, but after 1st chemo..she is ok, i pray the 2nd 3rd and 4th will help her even more.........this whole month has been a big lesson for all of us to never give up on anything since u never know what can happen with today's medicine...i just hope she continues to progress well
Thanks you all for ur input, it definitely gave her as well as our family some type of calmness when i know i can ask people with similar situations...next update will be in a few days i guess..so far, her attitude is great, lots of laughs wit her visiting friends, im gonna start working again on monday, and i advice her to stay away from anything that the chemo bible book has said to stay away from like germs, or eating 5-6 small meals instead of big portion ones...
Also, just to pass along...i like watching discovery health channel and out of the blue, this show called 911: the bronx before the show ended had a patient with advanced stage colorectal cancer spread through the lungs and liver....basically the same exact thing my mom has except for the lungs part..she was treated in the ER for sharp pains in abdomen, i couldnt help to watch or not watch, but it shows this 25 yr old girl, 25!!!, and her story..she got better after morphine, and i cannot forget what she said at the end before she was admitted out of the ER, she said sometimes its better to life of certainty since if you know your path at the end, you tend to become a better person, better at everything, since you know life is not forever since everyone goes there at some point...and if it doesnt happen, they you have lived an even better life....for a girl around my age, that is wisdom far beyond what I have...and i will move on forward with my life with that same demeanor, be the best person I can be.0 -
i really like to check on here alot at nights..marc24 said:...now i wonder...
i c...yeah i think my mom got hit with about 4 days of just plain sleepy/tired side effects. See we have 2 so-called experts that we heard from. One is the guy who saw the tumour during the colonoscopy, the other is our oncologist. The 1st guy is horrid at breaking and making news, he is oretty much mr. negative, although direct, still i dont like him. I ask him plainly how long till my mom will start getting weaker and weaker and he said about 2-3 months...its been 1 month after his prediction, mom has been in 1 chemo, so im hoping she doesnt fulfill that guy's prediction. He also told my dad directly she has 1 yr...the onco said she has 6 to 20 mos...but as the treatments go and as the days go by, i really believe now that it is really up to the person's body and reactions..and i hope to have the mom that has the courage and determination that all you guys have here....1 month ever since i joined this forum when i learned that my mom has stage iv...1 month has been up and down, but after 1st chemo..she is ok, i pray the 2nd 3rd and 4th will help her even more.........this whole month has been a big lesson for all of us to never give up on anything since u never know what can happen with today's medicine...i just hope she continues to progress well
Thanks you all for ur input, it definitely gave her as well as our family some type of calmness when i know i can ask people with similar situations...next update will be in a few days i guess..so far, her attitude is great, lots of laughs wit her visiting friends, im gonna start working again on monday, and i advice her to stay away from anything that the chemo bible book has said to stay away from like germs, or eating 5-6 small meals instead of big portion ones...
Also, just to pass along...i like watching discovery health channel and out of the blue, this show called 911: the bronx before the show ended had a patient with advanced stage colorectal cancer spread through the lungs and liver....basically the same exact thing my mom has except for the lungs part..she was treated in the ER for sharp pains in abdomen, i couldnt help to watch or not watch, but it shows this 25 yr old girl, 25!!!, and her story..she got better after morphine, and i cannot forget what she said at the end before she was admitted out of the ER, she said sometimes its better to life of certainty since if you know your path at the end, you tend to become a better person, better at everything, since you know life is not forever since everyone goes there at some point...and if it doesnt happen, they you have lived an even better life....for a girl around my age, that is wisdom far beyond what I have...and i will move on forward with my life with that same demeanor, be the best person I can be.
hence my supercrazy long replies if yall dont mind :-)0 -
I was given 6 months to live....marc24 said:i really like to check on here alot at nights..
hence my supercrazy long replies if yall dont mind :-)
over 4 1/2 YEARS ago....
In that time, I was dx'ed with a second, unrelated cancer (breast) and was treated and survived that one, too....now, NED (No Evidence of Disease) on both for over 3 years!!!
"Statistics are for betting the horses, and pull dates are for dairy products!"
Hugs, Kathi0 -
oh yes
Sleepiness after unhook, very normal. As for my situation on Folfox, some things tasted nasty, but mostly I just had no appetite. If someone put food in front of me I ate because I knew I should.
Someone on this board back before I started chemo (been done since Thanksgiving) likened fatigue to feeling "like being velcroed to your bed". That has stuck in my mind and seemed so odd. Then I felt it. It's a great explanation and one you can't understand until you feel it.
I am suprised that they didn't install her port pre-chemo, but I can't imagine her counts being too bad so soon after her first treatment. And she will definitely benefit from a port.
Blessing to you and you mother,
Pam0
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