Hunkered Down

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airborne72
airborne72 Member Posts: 300 Member

I have been amiss in posting.  I indicated that I would let others know how my chemo was progressing, but to be honest it is kicking my butt - at least for the 3-4 days after my infusion stops, which is were I am this morning.

This is my second cycle.  I have been maintaining a daily log of temp, weight and general feelings.  It is amazing that what I experienced the second cycle is verbatim what I experienced the first cycle.

As soon as the needle is disconnected I begin to ebb back into a feeling of general malaise, which turns into a flu-like feeling.  My appetite disappears and my energy drops to zero.  Yesterday was the second day after disconnect and it has proven to be my worst.  I literally spent 22 hours in bed, either asleep or drowsy.  I have resisted nausea with prescription meds (Prochlorperazine).  Those tablets work for me.

Weight loss is an issue though.  I have dropped 4 pounds since infusion.  Last time I gained 3 back so it appears that it is primarily fluid, but if I continue to lose 1 pound net each cycle then my BMI could become problematic.  This morning I weigh 131.  According to my notes from the first (previous) cycle my lowest weight day will be day after tomorrow.

To quote Lucy from Peanuts, I feel like BLAH!

Jim

 

Comments

  • ron50
    ron50 Member Posts: 1,723 Member
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    I had the dubious distinction

    Of getting thru 48 weekly sessions of chemo without my blood counts alterring in any way from normal and I put on weight. My secret was to eat bland food that would not cause nausea but would nourish. I went thru the whole of chemo on a diet of rolled oats made on milk with a large dollop of honey. The other thing i lived on was fresh  fruit. The only meat I ate was fish, mainly steamed with a white sauce. I hope you are feeling a bit better soon, Ron.

  • Lily Flower
    Lily Flower Member Posts: 260 Member
    edited December 2017 #3
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    I felt so deflated during my

    I felt so deflated during my first 2 treatments. I was bedridden and lost weight as well. Like what Ron said, try to eat bland food for less nausea. I noticed I developed sensitivity to smell. Certain strong smelled food would make me nausecous. 

    Feel better Jim and know that this too shall pass. 

  • Trubrit
    Trubrit Member Posts: 5,800 Member
    edited December 2017 #4
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    Its a wicked ride

    And I mean that in the old fashioned way, not the young ones talk. 

    Wicked as in bad. 

    I never did stay in bed, but I spent an awful long time asleep on the couch. I would be talking to my hubby or children, and just drop off in the middle of a sentence. I did video blogs, just for myself, during Chemo. There were times I hit the stop button because I had no control over my arms. They felt like lead, and it was hard to pick them up.  So yeah, this is all 'normal'. All horrible. All temporary. Though, no matter how temporary it is, it is still happening NOW. 

    I have heard that Ensure is a good drink to maintain weight or to help you not lose too much. I didn't use it, but others on the forum have. I have also heard that making your own ice cream shakes, can help; unless of course you have sensitivity to cold, and then its just torture. 

    You are well aware that it is not good to lose too much weight.  Once you start feeling a little better, start eating whatever you can, to put on some weight. Don't be worrying too much about calories, though too much sugar is not the way to go. 

    Other than that, there is not much more in the way of advice, because it is truly horrible and there is not way to sugar coat it. 

    Don't be worrying about reporting immedietely on the forum. We're going to be here whenever you have the energy to post. We're here in thought and spirit, knowing that you are out there, ploughing through the side effects, and sending you good vibes, prayers and yes, swinging some nekid chickens (inside joke from members and past members). 

    Its a tough road, and you're allowed to feel bad about it.  BE GOOD TO YOURSELF!

    Tru

     

     

  • Mikenh
    Mikenh Member Posts: 777
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    Sorry to hear the

    Sorry to hear the difficulties but glad you're posting. I had that kind of feeling this morning for stoma problems which I need to figure out how to fix. I should have been more proactive with my local oncologist but dealing with the surgical recovery was quite the challenge for me. I will likely start chem on the 7th week at the earliest because my oncologist is on vacation this week. If I have similar levels of debilitation, then it's going to affect my work and I'll have to figure out how to deal with that.

    I do hope that you can get back on the eating path (maybe ice cream or similar high-calorie foods).

  • coloCan
    coloCan Member Posts: 1,944 Member
    edited December 2017 #6
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    Try drinking a couple of containers of Boost,Ensure or drug

    store brand (like CVS,RiteAid)nutritiondrinks. I drank up to 5-6 a day to increase calories when food was an issue.....

  • abita
    abita Member Posts: 1,152 Member
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    had my second infusion today too

    I had my 2nd in hopital today also. I have the take home 46 hour device, so I am still connected. i have a bit of the cod sensitivity, and am very tired. Not sure if chemo or that I barely slept last night in anticipation. My appetite sort of disappears. My stomach doesn't let me know I am hungry. But I make food so I follow the nutrition guidelines to help heal. As soo as I take the first bite, I realize I am starving, so I can eat.

  • airborne72
    airborne72 Member Posts: 300 Member
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    Similar Pattern

    My regimen is similar.  Four hours of infusion at the clinic with the hard drugs and then 44 hour of 5Fu in the take home pump.  My schedule has turned out to be infusion on Wednesday and Thursday and disconnect on Friday.  I feel my worst on the Sunday and Monday after the disconnect.

    My appetitite will not respond to anything so far.  I have grown sick of eating milkshakes almost every night.  I have developed a $3/day milkshake habit.  I guess I am letting my fear of a blockage keep me from eating a balanced diet.  Plus, I am so tired of getting up several times through the night to empty my bag.

    I guess I had diahreaa yesterday and this morning because my bag would fill up within minutes after I swallowed any liquids (tomato juice and coffee).  I am fortunate in that I don't have to go to work.  Don't believe I could under these conditions.  And, I do detest the cold weather.  I would consider driving to Key West if I could handle the trip.

    Jim

  • Mikenh
    Mikenh Member Posts: 777
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    Similar Pattern

    My regimen is similar.  Four hours of infusion at the clinic with the hard drugs and then 44 hour of 5Fu in the take home pump.  My schedule has turned out to be infusion on Wednesday and Thursday and disconnect on Friday.  I feel my worst on the Sunday and Monday after the disconnect.

    My appetitite will not respond to anything so far.  I have grown sick of eating milkshakes almost every night.  I have developed a $3/day milkshake habit.  I guess I am letting my fear of a blockage keep me from eating a balanced diet.  Plus, I am so tired of getting up several times through the night to empty my bag.

    I guess I had diahreaa yesterday and this morning because my bag would fill up within minutes after I swallowed any liquids (tomato juice and coffee).  I am fortunate in that I don't have to go to work.  Don't believe I could under these conditions.  And, I do detest the cold weather.  I would consider driving to Key West if I could handle the trip.

    Jim

    You're on Oxaliplatin, right?

    You're on Oxaliplatin, right? That's four hours of infusion? I would have a hard time doing that and working full-time, especially if the drugs are debilitating. I worked from home most of the time while on Neo-Adjuvant and plan to do the same thing with Adjuvant.

    My wife made me chicken rice porridge. This is rice cooked to a very soft level (not oatmeal-soft but the rice puffs up quite a bit and it's really easy to swallow. The chicken is ground so it's easy to chew finely. That's probably 500 calories. I haven't had a blockage but I was in the shower once changing the bag when something shot out about three feet out of the stoma. It looked like a piece of onion or celery.

    On getting up at night: I just set alarms on my watch, get up and empty it and then get back to sleep. I can be pretty efficient at it when I want to be. The fear of leaking in bed has me doing this and it's just part of my schedule now. What I worry about is that the Xeloda will make me sleep more soundly and that I may miss my alarm. If that happens, then I'll have to go to a louder alarm (from watch to phone). It's just that the phone may wake others up. If the phone doesn't work, then I'll need someone to physically wake me up or I'll need one of those two-liter bags.

    We have the polar vortex coming in next week. Lows are in the teens. No snow for the next two weeks and I'm thankful for that but I'll find out about this freeze stuff that everyone is talking about. BTW, anyone heard from Beth recently?

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
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    Mikenh said:

    You're on Oxaliplatin, right?

    You're on Oxaliplatin, right? That's four hours of infusion? I would have a hard time doing that and working full-time, especially if the drugs are debilitating. I worked from home most of the time while on Neo-Adjuvant and plan to do the same thing with Adjuvant.

    My wife made me chicken rice porridge. This is rice cooked to a very soft level (not oatmeal-soft but the rice puffs up quite a bit and it's really easy to swallow. The chicken is ground so it's easy to chew finely. That's probably 500 calories. I haven't had a blockage but I was in the shower once changing the bag when something shot out about three feet out of the stoma. It looked like a piece of onion or celery.

    On getting up at night: I just set alarms on my watch, get up and empty it and then get back to sleep. I can be pretty efficient at it when I want to be. The fear of leaking in bed has me doing this and it's just part of my schedule now. What I worry about is that the Xeloda will make me sleep more soundly and that I may miss my alarm. If that happens, then I'll have to go to a louder alarm (from watch to phone). It's just that the phone may wake others up. If the phone doesn't work, then I'll need someone to physically wake me up or I'll need one of those two-liter bags.

    We have the polar vortex coming in next week. Lows are in the teens. No snow for the next two weeks and I'm thankful for that but I'll find out about this freeze stuff that everyone is talking about. BTW, anyone heard from Beth recently?

    I was just wondering about Beth

    we need to check up on her! my husband and son are the soundest sleepers on the planet they both have alarms for hearing impaired people and it comes with a disc you put under your pilllow that vibrates. That be an option if you are worried about waking up.

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
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    Similar Pattern

    My regimen is similar.  Four hours of infusion at the clinic with the hard drugs and then 44 hour of 5Fu in the take home pump.  My schedule has turned out to be infusion on Wednesday and Thursday and disconnect on Friday.  I feel my worst on the Sunday and Monday after the disconnect.

    My appetitite will not respond to anything so far.  I have grown sick of eating milkshakes almost every night.  I have developed a $3/day milkshake habit.  I guess I am letting my fear of a blockage keep me from eating a balanced diet.  Plus, I am so tired of getting up several times through the night to empty my bag.

    I guess I had diahreaa yesterday and this morning because my bag would fill up within minutes after I swallowed any liquids (tomato juice and coffee).  I am fortunate in that I don't have to go to work.  Don't believe I could under these conditions.  And, I do detest the cold weather.  I would consider driving to Key West if I could handle the trip.

    Jim

    I am sorry it's knocking you out so

    I hope you don't have too many treatments ahead of you, not sure how many you have to have. The compazine you are taking might be adding to the fatigue but it's better you rest than be sick. Eat what you can and rest as much as you need no one would expect you to not do those things. i am sorry you feel so wiped out :(

  • ReeRee2
    ReeRee2 Member Posts: 39
    edited December 2017 #12
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    Mikenh said:

    Sorry to hear the

    Sorry to hear the difficulties but glad you're posting. I had that kind of feeling this morning for stoma problems which I need to figure out how to fix. I should have been more proactive with my local oncologist but dealing with the surgical recovery was quite the challenge for me. I will likely start chem on the 7th week at the earliest because my oncologist is on vacation this week. If I have similar levels of debilitation, then it's going to affect my work and I'll have to figure out how to deal with that.

    I do hope that you can get back on the eating path (maybe ice cream or similar high-calorie foods).

    Ice Cream if only

    if you have colon cancer and do the normal treatment ice cream will not be in the plan. Cold things you touch hurt and you do not dare drink cold things only warm or room temp. Protein drinks are great to keep around! 

  • ReeRee2
    ReeRee2 Member Posts: 39
    edited December 2017 #13
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    Similar Pattern

    My regimen is similar.  Four hours of infusion at the clinic with the hard drugs and then 44 hour of 5Fu in the take home pump.  My schedule has turned out to be infusion on Wednesday and Thursday and disconnect on Friday.  I feel my worst on the Sunday and Monday after the disconnect.

    My appetitite will not respond to anything so far.  I have grown sick of eating milkshakes almost every night.  I have developed a $3/day milkshake habit.  I guess I am letting my fear of a blockage keep me from eating a balanced diet.  Plus, I am so tired of getting up several times through the night to empty my bag.

    I guess I had diahreaa yesterday and this morning because my bag would fill up within minutes after I swallowed any liquids (tomato juice and coffee).  I am fortunate in that I don't have to go to work.  Don't believe I could under these conditions.  And, I do detest the cold weather.  I would consider driving to Key West if I could handle the trip.

    Jim

    Milkshakes

    man I cannot drink anything cold and what I would give for a milkshake!

  • abita
    abita Member Posts: 1,152 Member
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    ReeRee2 said:

    Milkshakes

    man I cannot drink anything cold and what I would give for a milkshake!

    the cold

    I only had 3 incidents of cold sensitivity my first round. Today was my second, and it all is getting me. The buttons on my coat, the seat belt, the metal toilet handle, my metal bed rfame, walked into the kitchen, and the stone tiles made me jump out. I can't qucikly swallow room temp water. I have to hold it in my mouth a second, then swallow or it gets my throat. I guess in the big picture, this isn't that bad as it is manageble, and there are worse side effects. But it is a bit painful. and I am so thirsty, I wish I could just chug a few glasses of water.

     

  • airborne72
    airborne72 Member Posts: 300 Member
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    Mikenh said:

    You're on Oxaliplatin, right?

    You're on Oxaliplatin, right? That's four hours of infusion? I would have a hard time doing that and working full-time, especially if the drugs are debilitating. I worked from home most of the time while on Neo-Adjuvant and plan to do the same thing with Adjuvant.

    My wife made me chicken rice porridge. This is rice cooked to a very soft level (not oatmeal-soft but the rice puffs up quite a bit and it's really easy to swallow. The chicken is ground so it's easy to chew finely. That's probably 500 calories. I haven't had a blockage but I was in the shower once changing the bag when something shot out about three feet out of the stoma. It looked like a piece of onion or celery.

    On getting up at night: I just set alarms on my watch, get up and empty it and then get back to sleep. I can be pretty efficient at it when I want to be. The fear of leaking in bed has me doing this and it's just part of my schedule now. What I worry about is that the Xeloda will make me sleep more soundly and that I may miss my alarm. If that happens, then I'll have to go to a louder alarm (from watch to phone). It's just that the phone may wake others up. If the phone doesn't work, then I'll need someone to physically wake me up or I'll need one of those two-liter bags.

    We have the polar vortex coming in next week. Lows are in the teens. No snow for the next two weeks and I'm thankful for that but I'll find out about this freeze stuff that everyone is talking about. BTW, anyone heard from Beth recently?

    Oxy...

    Mike:

    Yes, I am taking the Oxaliplatin.  The total clinic infusion time averages between three and four hours.  That includes the steroids and anti-nausea chemicals plus the Oxal., etc.  The take home pump is infusing me with liquid 5Fu.

    The clinical infustion with eat up one half of a day.  The mobile pump is merely a nuisance (don't forget that you are hooked to it or it will be a bad day at black rock) so it should not prevent one from going to work/out.

    I have found that the days that just knock me down are days 5-7 after my initial infusion.  I can barely get dressed, much less be able to travail (work) either physically or mentally.  Not sure if STD can be fragmented like that but I am not debilitated the entire two weeks, just days 5-7 after infusion.

    Jim

  • airborne72
    airborne72 Member Posts: 300 Member
    edited December 2017 #16
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    I am sorry it's knocking you out so

    I hope you don't have too many treatments ahead of you, not sure how many you have to have. The compazine you are taking might be adding to the fatigue but it's better you rest than be sick. Eat what you can and rest as much as you need no one would expect you to not do those things. i am sorry you feel so wiped out :(

    Treatment Plan

    Ruth:

    I was specific with my oncologist about the number of treatments.  Instead of the traditional 12 cycles I am only going to do 6.  I am in the middle of #2 right now.  My reasoning was based upon the fact that the neoadjuvant chemo/radiation totally eradicated my tumor, as evidenced by images and surgery.  So I questioned the need to do any adjuvant chemo. 

    My oncologist recommended it and offered the "it only takes one cell" argument to be safe.  I will never be here again so I decided to split the difference and go with 6 cycles.  This is all so speculative.  I just did not want to not try and then get another positive diagnosis in the future which would make me feel as if I missed the opportunity to "mop up" the cancer while it was responding to the other chemo/radiation/surgery.

    Jim

  • airborne72
    airborne72 Member Posts: 300 Member
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    abita said:

    the cold

    I only had 3 incidents of cold sensitivity my first round. Today was my second, and it all is getting me. The buttons on my coat, the seat belt, the metal toilet handle, my metal bed rfame, walked into the kitchen, and the stone tiles made me jump out. I can't qucikly swallow room temp water. I have to hold it in my mouth a second, then swallow or it gets my throat. I guess in the big picture, this isn't that bad as it is manageble, and there are worse side effects. But it is a bit painful. and I am so thirsty, I wish I could just chug a few glasses of water.

     

    Cold Sensitivity

    Abita:

    My cold sensitivity increased during this second cycle.  Still not debilitating, but another issue to deal with.  This time it is triggered by room temperature food also - activated by the taste buds.  I have found that if I take small bites at first and slowly chew them then my mouth/nerves adjust.  It's also a good safeguard to force me to chew my food well to prevent any ileostomy issues.

    Jim

  • Nazareth
    Nazareth Member Posts: 88 Member
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    ReeRee2 said:

    Milkshakes

    man I cannot drink anything cold and what I would give for a milkshake!

    lol i crave itlalian ice- but

    lol i crave itlalian ice- but don't dare try-

  • Nazareth
    Nazareth Member Posts: 88 Member
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    yup- it's like going a couple

    yup- it's like going a couple rounds with a boxer- I noticed you have an iliostomy- be sure to get enough to drink- dehydration can casue more issues- (peopel with ilios flirt with dehydration all the time unfortunately- and addign chemo that can cause diarhea makes it worse) I ended up gettign a little kidney functio ndamage from dehydration- and now I am on second round of chemo- just started- I had that chewing issue too- wasn't terrible, just annoying- so far htough i can drink cold stuff- but hands hurt when handling cold drinks- also be sure to drink things like carnation drinks to get enough protiens and vitamins etc- ensure, nutrition drinks etc-

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
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    Treatment Plan

    Ruth:

    I was specific with my oncologist about the number of treatments.  Instead of the traditional 12 cycles I am only going to do 6.  I am in the middle of #2 right now.  My reasoning was based upon the fact that the neoadjuvant chemo/radiation totally eradicated my tumor, as evidenced by images and surgery.  So I questioned the need to do any adjuvant chemo. 

    My oncologist recommended it and offered the "it only takes one cell" argument to be safe.  I will never be here again so I decided to split the difference and go with 6 cycles.  This is all so speculative.  I just did not want to not try and then get another positive diagnosis in the future which would make me feel as if I missed the opportunity to "mop up" the cancer while it was responding to the other chemo/radiation/surgery.

    Jim

    Jim

    i understand exactly what you are saying! My husband had his original colon surgery and refused the adjuvant chemo. He had an recurrence 4 years later, and I keep thinking maybe he would not have. Then they did a resection of his liver and never offered him chemo. Needless to say we have a new dr and things are going to be a bit different for him this time. So this time he will do 6 treatments have a scan (Monday actually) and if all has shrunk surgery then 6 more. good luck!!! 

  • abita
    abita Member Posts: 1,152 Member
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    Oxy...

    Mike:

    Yes, I am taking the Oxaliplatin.  The total clinic infusion time averages between three and four hours.  That includes the steroids and anti-nausea chemicals plus the Oxal., etc.  The take home pump is infusing me with liquid 5Fu.

    The clinical infustion with eat up one half of a day.  The mobile pump is merely a nuisance (don't forget that you are hooked to it or it will be a bad day at black rock) so it should not prevent one from going to work/out.

    I have found that the days that just knock me down are days 5-7 after my initial infusion.  I can barely get dressed, much less be able to travail (work) either physically or mentally.  Not sure if STD can be fragmented like that but I am not debilitated the entire two weeks, just days 5-7 after infusion.

    Jim

    I have that, but more like

    I have that, but more like day 4 through a few days. I think the steroid they give us to prevent allergic reactions also gives us energy for a few days. on the 4th day, I feel awake the first few hours, then I am so tired the rest of the day. I have tried to get important stuff done in those hours. I am still in the recovery from my bowel surgery, so that fatigues me a bit too. I understand how frustrating it is to not be able to do little things because so tired.