New Guy Starting Chemoradiation treatment tomorrow... Yikes!
Comments
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You are right kcass...Kent Cass said:Wake-up Call
Uh, welcome to H&N tx, Jake. I started at 142 lbs and got down to 117 during tx. How much weight you lose is towards the bottom of the totem pole when it comes to priorities, now. Only thing that really matters is getting rid of the C, so don't even think about quitting the chemo- especially this early. No-brainer.
I have mentioned numerous times that my regiment of C&R was different than everyone else's on this forum. I was not given the choice in regards to a PEG because of that regiment, and got one put in around 1+ week before tx started. Before the 2nd week of tx my sole intake of nutrition was via the PEG, along with use of Morphine and ice. They told me I was to put 3 cans of Jevity/day into the PEG to get the nutrients I needed, but there were many days I couldn't even get 2 to go down. AND, I only suffered from nausea early a couple times, due to sleeping for too long in bed/hoizontal. The nausea I had was the product of toxic congestion getting into my stomach, which does not mesh with the recliner concept, I know, except that when horizontal the build-up of nasal congestion perhaps became greater. And spitting out the bad congestion is critical- don't swallow any of it. I used to carry a little bucket with me to spit in all the time.
Compazine was there for those few times, early, but I made the sleep adjustments and the vomits went away. Might be possible you're trying to eat too much. I say this, because that food that comes back up with the nausea did you no good going into your mouth and stomach. Just think about that some. I remember others who made that mistake of not realizing that. Drink plenty of water, and eat as much as your body can handle without the vomits, but understand that we all lose weight going thru tx, and putting food into you that's just gonna be rejected in the form of vomit does you no good.
And remember, Jake, that I'm 6-1/2+ years out to the good, now; and, others like Phrannie, who had a regiment more like your's, are also numerous years out to the good. Also, we've seen a few cases of recent where it allegedly came back within a year- when the likelihood is that it was never totally eradicated with the initial tx regiment if it's there so soon after tx. You're in the ring with big ol' C, Jake, and it's not thinking about winnning by decision, or even a KO- it's only thinking about killing you, so roll with tx's punches and make the necessary adjustments to get thru the tx regiment your Drs want you to go thru.
kcass
Kcass, you are absolutely right this week was a wake up call for H&N tx and thanks for the tough love bro I needed it... Your opening comment did make me laugh though and I needed that too. I guess I was hoping I could eat a bunch and stay close to my old 'normal' through the first couple weeks but that wasn't the case for me. Ohh well live and learn and now I know.
so I know none of us are doctors here (but we do have a few nurses) but if the doc offers for me to switch to carboplatin tomorrow do y'all have any thoughts on that? Aren't they almost equal in effectiveness but possibly carbo I is better for side effects?
Just curious I am prepared to stick with cisplatin but I am curious about carboplatin.
ttyl
jake...
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Just an FYI........jakesaround said:You are right kcass...
Kcass, you are absolutely right this week was a wake up call for H&N tx and thanks for the tough love bro I needed it... Your opening comment did make me laugh though and I needed that too. I guess I was hoping I could eat a bunch and stay close to my old 'normal' through the first couple weeks but that wasn't the case for me. Ohh well live and learn and now I know.
so I know none of us are doctors here (but we do have a few nurses) but if the doc offers for me to switch to carboplatin tomorrow do y'all have any thoughts on that? Aren't they almost equal in effectiveness but possibly carbo I is better for side effects?
Just curious I am prepared to stick with cisplatin but I am curious about carboplatin.
ttyl
jake...
Just a note or reminder for future; If you are ever put on antibiotics to ether eat yogert or take probiotics. Antibiotics kill all bacteria, good and the bad. So you need to replace the good ones, and yogert or probiotics [3-4 billion ones] are always good to take and help your system get back to normal. Remember, one day at a time, and only today matters because yesterday is gone, and tomorrow is not here yet. There will lots of time to think about tomorrow, but for now just stay in the moment and you will get through this with all the tomorrows you want.
Bill
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Follow-upjakesaround said:You are right kcass...
Kcass, you are absolutely right this week was a wake up call for H&N tx and thanks for the tough love bro I needed it... Your opening comment did make me laugh though and I needed that too. I guess I was hoping I could eat a bunch and stay close to my old 'normal' through the first couple weeks but that wasn't the case for me. Ohh well live and learn and now I know.
so I know none of us are doctors here (but we do have a few nurses) but if the doc offers for me to switch to carboplatin tomorrow do y'all have any thoughts on that? Aren't they almost equal in effectiveness but possibly carbo I is better for side effects?
Just curious I am prepared to stick with cisplatin but I am curious about carboplatin.
ttyl
jake...
First, I have no knowledge of carboplatin, but assume it is also platinum-based chemo. Others have used it, but not me. Concurrent Cisplatin and 5-FU for 96-hours, twice, along with the 31 full rads in 20 places/session, was my regiment.
Second, I re-read my post, and need to clarify a couple things due to editing I did when writing it, and it didn't exactly convey some of what I needed to say. 1) my sleep thru tx was 3 hours in bed/horizontal, then I'd get up and go downstairs and stretch out on the recliner for whatever other sleep I could get/night; and would sleep in the afternoons on that recliner after the morning sessions. Being more vertical in the recliner might seem like I'd be more prone to get that toxic congestion in my stomach, but I think it was just a matter of less nasal congestion forming by not being horizontal. Several years ago I and a few others noted they also thought the real culprit for the nausea was that toxic congestion getting into the stomach. I only had the vomits twice, early, and it was in my bedroom when getting out of bed. I even had my alarm clock set so that I could not sleep in bed more than 3-1/2 hours.
AND, 2)my wording might have been misleading about when I started on the PEG, Morph and ice- it was the 2nd week in tx, not before tx. On my very first visit with the Chemo Dr I was told I had to get the PEG, Power Port, and that they'd have me on Morph, because they knew what their regiment would do to me. I also balked at the PEG notion, but only a passing thought. They did not, however, know how fast it all would get to me. They didn't even have Magic Mouthwash prescribed for me at the end of the first week, and over the course of that first weekend it all went south on me fast. Monday of week #2 I caused a scene with the rad Folks by taking one of the Technicians into a room, slamming the side of my right hand down on a counter top, pointing at her face and demanding to talk to the rad Dr immediately. Needless to say, she made that happen. Hello Magic Mouthwash. Tuesday was my first in-tx visit with the Chemo Dr, and all I had to do was open my mouth and let her see from over a foot away. All she said was "Scalding," at the sight of flesh-colored stripes running lengthwise down my tongue, and a couple hours later I said hello to Morphine.
It just is what it is, Jake. Come what may. Only thing that matters is you and your Dr team killing ol' C, instead of just a KO. Trial and error, and making adjustments to this and that are all part of the tx experience, and you'll do just fine.
Believe
kcass
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Cisplatin and Carboplatinjakesaround said:You are right kcass...
Kcass, you are absolutely right this week was a wake up call for H&N tx and thanks for the tough love bro I needed it... Your opening comment did make me laugh though and I needed that too. I guess I was hoping I could eat a bunch and stay close to my old 'normal' through the first couple weeks but that wasn't the case for me. Ohh well live and learn and now I know.
so I know none of us are doctors here (but we do have a few nurses) but if the doc offers for me to switch to carboplatin tomorrow do y'all have any thoughts on that? Aren't they almost equal in effectiveness but possibly carbo I is better for side effects?
Just curious I am prepared to stick with cisplatin but I am curious about carboplatin.
ttyl
jake...
Jake my husband is a cancer surgeon, not a chemo doc. His understanding is that Cisplatin is the gold standard for H & N. and Carboplatin is slightly less effective than Cisplatin, but has less side effects. If you can stick with the Cisplatin I would.
Barbara
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Week 2 in the books...
Just wanted to send a quick note on my progress and to say hello. Week 2 was different than week 1, not sure it was better or worse just different. The good part was that I didn't get sick from the chemo this week. I went ahead and took my anti nausea meds the day after my chemo, before I felt sick, and it worked pretty well. The bad part is that my taste buds are officially toast and I have been struggling to find things to eat. I have made a few strides in finding food the last couple days but it's really slim pickings. I can eat oatmeal, bananas, corn, green beans, and apples. Anything that comes out of a can tastes like the can it was packaged in.
Of course all this and I believe the anti nausea meds are really killing my appetite. I am mainly living on Ensure Plus and i may start looking for other protein drinks with even more calories.ttyl,
jake...
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Good to hearjakesaround said:Week 2 in the books...
Just wanted to send a quick note on my progress and to say hello. Week 2 was different than week 1, not sure it was better or worse just different. The good part was that I didn't get sick from the chemo this week. I went ahead and took my anti nausea meds the day after my chemo, before I felt sick, and it worked pretty well. The bad part is that my taste buds are officially toast and I have been struggling to find things to eat. I have made a few strides in finding food the last couple days but it's really slim pickings. I can eat oatmeal, bananas, corn, green beans, and apples. Anything that comes out of a can tastes like the can it was packaged in.
Of course all this and I believe the anti nausea meds are really killing my appetite. I am mainly living on Ensure Plus and i may start looking for other protein drinks with even more calories.ttyl,
jake...
Taste buds will be gone for probably the next 5+ months, but they will come back, and gradually get back to close to how they were before. Hondo/Tim and some of the others might be a real help on the food thing, Jake, so you could send him a private message asking for advice. He's been thru a lot more than I have, and has been into the foods thing a lot more than I.
My understanding about the difference between Jevity, which I survived on thru all tx with my feeding tube, and Ensure, etc., is that Jevity has more fiber. Just what I heard, but might be more to it than that. Never tried to drink it, so no clue on what it tastes like. Ever since tx my breakfast is 3 bottles of Ensure, FYI.
Better days are ahead, Jake. You'll get there, with the memories you're making now.
kcass
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Hi Jake
Just wanted to say I am totally reading your comments and everyone elses. I am one of those who wants to be prepared although I know thats not possible. I am learning things though. Glad to hear your first 2 weeks were liveable!! I should learn my treatment plan tues. Best wishes, Karen
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You're not alone! Week 2 as well
Jake - hang in there buddy! You're not alone in this, I'm the same (week 2) and I find comfort knowing there's a companion! My taste buds, similarly, are also quite toasted. I happen to cook often for the family, and can no longer taste what I'm putting in. But I've tested using smells. Maybe that helps a bit, using smells to guide food flavours, not sure when smell will be gone too. Also, for me it worked better with more subtle/ligther flavours. Somehow, it tricks my mind into believing the flavour is just 'lacking' but, at least there's no strong flavour notes that stand out. I find "bold" flavours very difficult, the food just tastes too different from what it looks like.
Mouth sores are also beginning to creep up but went and bought a box of ice-cream.
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canned foodjakesaround said:Week 2 in the books...
Just wanted to send a quick note on my progress and to say hello. Week 2 was different than week 1, not sure it was better or worse just different. The good part was that I didn't get sick from the chemo this week. I went ahead and took my anti nausea meds the day after my chemo, before I felt sick, and it worked pretty well. The bad part is that my taste buds are officially toast and I have been struggling to find things to eat. I have made a few strides in finding food the last couple days but it's really slim pickings. I can eat oatmeal, bananas, corn, green beans, and apples. Anything that comes out of a can tastes like the can it was packaged in.
Of course all this and I believe the anti nausea meds are really killing my appetite. I am mainly living on Ensure Plus and i may start looking for other protein drinks with even more calories.ttyl,
jake...
In addition to staying away from canned food - start using plastic forks and spoons. That will help with the metal taste.
I had lots and lots of "canned" peaches - that were in glass jars. they were hard to find in 2007, but know Ii see them everywhere.
Also, chocolate milk tasted fairly well for a while. Be sure to use whole milk for the calories.
Lorna
2007 & 2014
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Starting the second half...
Today offically marks my halfway point in treatment. I will be recieving my 16th out of 32 rad treatments today and I will be having my 4th out of 6 chemo treatments tomorrow. I have been feeling pretty tired the last week or so and I believe it has as much to do with the treatments as it does my low/poor nutrition. I am still basically living off Ensure Plus a little bit of oatmeal and canned peaches here and there. My doc told me to try and drink about 5 Ensure Plus drinks per day but I am only averaging 4 on good days and 3 on all other days. My fluid intake is pretty low as well but I did get two days of IV fluids last week after my chemo to help protect my kidneys. I am going to try and do better with my intake this week but it has been a challenge to say the least. The bad right now is that my appetitie is very low so its hard to eat and drink and i only have mucus in my mouth and throat which i constatntly spit out but it does cause me to gag quite often and small vomits rarely. My facial hair is now falling out in chunks but that is not a big concern. The good news is that I dont have any significant mouth or throat sores at this time so swallowing is not painful.
I am ready for the next three weeks to be done so I can get on the road to recovery.
Keep the thoughts and prayers coming.
Jake...
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Wow, see how the weeks go by.jakesaround said:Starting the second half...
Today offically marks my halfway point in treatment. I will be recieving my 16th out of 32 rad treatments today and I will be having my 4th out of 6 chemo treatments tomorrow. I have been feeling pretty tired the last week or so and I believe it has as much to do with the treatments as it does my low/poor nutrition. I am still basically living off Ensure Plus a little bit of oatmeal and canned peaches here and there. My doc told me to try and drink about 5 Ensure Plus drinks per day but I am only averaging 4 on good days and 3 on all other days. My fluid intake is pretty low as well but I did get two days of IV fluids last week after my chemo to help protect my kidneys. I am going to try and do better with my intake this week but it has been a challenge to say the least. The bad right now is that my appetitie is very low so its hard to eat and drink and i only have mucus in my mouth and throat which i constatntly spit out but it does cause me to gag quite often and small vomits rarely. My facial hair is now falling out in chunks but that is not a big concern. The good news is that I dont have any significant mouth or throat sores at this time so swallowing is not painful.
I am ready for the next three weeks to be done so I can get on the road to recovery.
Keep the thoughts and prayers coming.
Jake...
The days may seem long but in a way the weeks go fast. You have done so well and hope the next half will be even better. Remember Jake on bad days you just take them one by one. Celabrate every little thing you can.
Bill
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Jake....jakesaround said:Starting the second half...
Today offically marks my halfway point in treatment. I will be recieving my 16th out of 32 rad treatments today and I will be having my 4th out of 6 chemo treatments tomorrow. I have been feeling pretty tired the last week or so and I believe it has as much to do with the treatments as it does my low/poor nutrition. I am still basically living off Ensure Plus a little bit of oatmeal and canned peaches here and there. My doc told me to try and drink about 5 Ensure Plus drinks per day but I am only averaging 4 on good days and 3 on all other days. My fluid intake is pretty low as well but I did get two days of IV fluids last week after my chemo to help protect my kidneys. I am going to try and do better with my intake this week but it has been a challenge to say the least. The bad right now is that my appetitie is very low so its hard to eat and drink and i only have mucus in my mouth and throat which i constatntly spit out but it does cause me to gag quite often and small vomits rarely. My facial hair is now falling out in chunks but that is not a big concern. The good news is that I dont have any significant mouth or throat sores at this time so swallowing is not painful.
I am ready for the next three weeks to be done so I can get on the road to recovery.
Keep the thoughts and prayers coming.
Jake...
I had a lot of trouble trying to get the calories in, too....I switched to Boost VHC (very high calorie).....it has more calories than than the Boost plus....like 530 calories in a carton instead of 300 and something. Makes it easier to boost the calorie intake, if you don't have to up the number of cartons to do it.
I used to order it off Amazon.com
p
PS....YOU'RE at the the first milestone....the 1/2 way mark....WHOOOOO HOOO!!!
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Hump dayjakesaround said:Starting the second half...
Today offically marks my halfway point in treatment. I will be recieving my 16th out of 32 rad treatments today and I will be having my 4th out of 6 chemo treatments tomorrow. I have been feeling pretty tired the last week or so and I believe it has as much to do with the treatments as it does my low/poor nutrition. I am still basically living off Ensure Plus a little bit of oatmeal and canned peaches here and there. My doc told me to try and drink about 5 Ensure Plus drinks per day but I am only averaging 4 on good days and 3 on all other days. My fluid intake is pretty low as well but I did get two days of IV fluids last week after my chemo to help protect my kidneys. I am going to try and do better with my intake this week but it has been a challenge to say the least. The bad right now is that my appetitie is very low so its hard to eat and drink and i only have mucus in my mouth and throat which i constatntly spit out but it does cause me to gag quite often and small vomits rarely. My facial hair is now falling out in chunks but that is not a big concern. The good news is that I dont have any significant mouth or throat sores at this time so swallowing is not painful.
I am ready for the next three weeks to be done so I can get on the road to recovery.
Keep the thoughts and prayers coming.
Jake...
Hooray! You are half way! And after the next day, you'll be MORE than 1/2 way done. I'm glad the mouth sores aren't too bad. Are you trying Mucinex for the thick mucus? It helps a little bit...you can get it in liquid form. Phrannie's suggestion is a good one...try and pack those calories in.
My husband lost his facial hair and I for one loved it! never liked that scratchy ol beard anyway!
barbara
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Yay to all the progress youjakesaround said:Starting the second half...
Today offically marks my halfway point in treatment. I will be recieving my 16th out of 32 rad treatments today and I will be having my 4th out of 6 chemo treatments tomorrow. I have been feeling pretty tired the last week or so and I believe it has as much to do with the treatments as it does my low/poor nutrition. I am still basically living off Ensure Plus a little bit of oatmeal and canned peaches here and there. My doc told me to try and drink about 5 Ensure Plus drinks per day but I am only averaging 4 on good days and 3 on all other days. My fluid intake is pretty low as well but I did get two days of IV fluids last week after my chemo to help protect my kidneys. I am going to try and do better with my intake this week but it has been a challenge to say the least. The bad right now is that my appetitie is very low so its hard to eat and drink and i only have mucus in my mouth and throat which i constatntly spit out but it does cause me to gag quite often and small vomits rarely. My facial hair is now falling out in chunks but that is not a big concern. The good news is that I dont have any significant mouth or throat sores at this time so swallowing is not painful.
I am ready for the next three weeks to be done so I can get on the road to recovery.
Keep the thoughts and prayers coming.
Jake...
Yay to all the progress you have made and how well you are doing overall. Have you tried making you own smoothies? There are some recipes for very, very high calorie options out there. My husband had the boost VHC but could not keep it down towrads the end. The smoothies are worth a try if this happens.
Hope things keep going well for you!
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