Second Chemo Session Started - Hmmm, Houston is This Maybe The Start of The Fun?
Had the second hook-up and now on the pump. First few hours after disconnect of infusion was okay. Came home and had something to drink that was in cooler but left out for an hour or so. When drinking felt like I had something stuck in my throat as if a bit of food, but had not eaten in hours. Took an aspirin about an hour before and sitting here trying to rationlize it as something else.
Then some tingling/numbness in toes. First time went away in about an hour. Almost felt like if you sit wrong and it falls asleep (toes on one foot only), back to same foot this morning with minor tingling/numbness and a couple of fingers. Still thinking it is positional, though the toes if they fall asleep (before all this) usually wake up in minutes. Some fingers now. Keep on trying to think I am pinching nerves by sitting or lying in certain ways. Have done that sometimes in past like when twisting back/pulling shoulders (pinched nerves type thing feeling). So I guess I am still in semi-denial phase.
Well made it through one and a few hours (this one added the Oxi). And if it just stays like this level, I am fine with it. But guess it builds up. Yippee. I will tell you this cancer stuff really can be annoying. 
On the good news front I keep the doctors and nurses laughing 
Comments
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check this out
See Winter Marie's post about how to help relieve this issue.
http://csn.cancer.org/node/293092
She is long time warrior.
Marie who loves kitties
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Fun stuff!
I'm glad you're enjoying yourself.
Don't worry, soon enought the tingling in your toes will go away and they'll just be numb and weak all the time. If you live in a warm climate like I do, you just learn to kick your flops against the wall to get the strap between your lifeless toes. Seriously though, hang in there and keep your doctor up to date on your side effects. It helps them decide when to pull back the Oxi.0 -
Lump it
I had the lump thing in the back of my throat and also at the breast bone. It was so hard to swallow, but my Oncologist told me there was nothing there, just the sensation.
Dont' you just love it! All these wonderful side effects and not knowing which ones are going to get you and which ones you're going to escape from .
I was lucky (at first) with the neuropathy. No numbness or tingling until after chemo (FOLFOX) and then WHAM. I was on the 5FU when it hit, and I think it only happened because I had to have my meds upped after my pump broke. I still have it in my feet 18 months later, though it is starting, just this past month, to get better. YAY!
Its hard, espeically when you're going through it, but its really great to be looking back on it. I pray that you will be looking back on it, and never having to deal with treatments again.
Sue - Trubrit
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Yeah Think It Is The Oxijalusa said:The feeling of something in
The feeling of something in your throat is the oxi. I think it must be the cold hitting the epglottis.
It is hard to say with the tingling. I have some neoropathy from chemo. I guess it progresses with each treatment.
Went outside, no gloves, mid 30s (and I am good with the cold generally and like it), within 30-45 seconds. Whoops.
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Going To Try itLovekitties said:check this out
See Winter Marie's post about how to help relieve this issue.
http://csn.cancer.org/node/293092
She is long time warrior.
Marie who loves kitties
Next session I think. So far not too bad, but only the second session and first with Oxi so thinking it may be the tip of the iceberg (or prepping for it emotionally anyway just in case)
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I usually wear flip flopsSteve444 said:Fun stuff!
I'm glad you're enjoying yourself.
Don't worry, soon enought the tingling in your toes will go away and they'll just be numb and weak all the time. If you live in a warm climate like I do, you just learn to kick your flops against the wall to get the strap between your lifeless toes. Seriously though, hang in there and keep your doctor up to date on your side effects. It helps them decide when to pull back the Oxi.Almost all the time, even in winter unless there is enough snow so really not easy not to wind up in snow, so that sounds great!!! (kind of
)Keeping tabs now, have a feeling it is reaction. Left foot has been constant now today. Totally livaeble, no worries and hoping it goes no further. But I know better. Dang.
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Too Soon Dang ItTrubrit said:Lump it
I had the lump thing in the back of my throat and also at the breast bone. It was so hard to swallow, but my Oncologist told me there was nothing there, just the sensation.
Dont' you just love it! All these wonderful side effects and not knowing which ones are going to get you and which ones you're going to escape from .
I was lucky (at first) with the neuropathy. No numbness or tingling until after chemo (FOLFOX) and then WHAM. I was on the 5FU when it hit, and I think it only happened because I had to have my meds upped after my pump broke. I still have it in my feet 18 months later, though it is starting, just this past month, to get better. YAY!
Its hard, espeically when you're going through it, but its really great to be looking back on it. I pray that you will be looking back on it, and never having to deal with treatments again.
Sue - Trubrit
I was expecting to coast a few sessions at least
It is like playing the lottery. Is it cancer? What stage am I? Will I get the side effects? The time between things seems to go forever with the wait. Sort of just want it done. There is the block of time for the next six months with "Hmmmm there could be scheduling issues." LOLGlad to hear your neuropathy is starting to resolve. The list that you had of reactions sounds like anything that is possible was going to.
My Dad had some various things going on and he was the poster child for adverse reactions. I am the opposite normally. Was hoping, and still do, that this overall will head that way. I will not go outside without gloves though. Was told the sensitivity is usually day of infusion and 5 days. Nurse made it more like no ifs, ands or buts, whereas I was under the impression there was a c--p shoot in this part of the games. Kind of bummed there a bit since I Rolled Snake eyes before I even started the second infusion based on that
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Effects areNewHere said:Too Soon Dang It
I was expecting to coast a few sessions at least
It is like playing the lottery. Is it cancer? What stage am I? Will I get the side effects? The time between things seems to go forever with the wait. Sort of just want it done. There is the block of time for the next six months with "Hmmmm there could be scheduling issues." LOLGlad to hear your neuropathy is starting to resolve. The list that you had of reactions sounds like anything that is possible was going to.
My Dad had some various things going on and he was the poster child for adverse reactions. I am the opposite normally. Was hoping, and still do, that this overall will head that way. I will not go outside without gloves though. Was told the sensitivity is usually day of infusion and 5 days. Nurse made it more like no ifs, ands or buts, whereas I was under the impression there was a c--p shoot in this part of the games. Kind of bummed there a bit since I Rolled Snake eyes before I even started the second infusion based on that
cumulative, it's the oxi that has the worst side effects and I understand you only have to do 9, that's great. You're timing with the weather is good too in that we're heading into spring and summer. Just take it one infusion at a time. I remember thinking it wasn't as bad as I thought it was going to be, I feel like you might sail through. This is doable, the big thing is whether it'll work or not, best of luck with that. Stay strong!
Easyflip/Richard
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Hanging In There For SureEasyflip said:Effects are
cumulative, it's the oxi that has the worst side effects and I understand you only have to do 9, that's great. You're timing with the weather is good too in that we're heading into spring and summer. Just take it one infusion at a time. I remember thinking it wasn't as bad as I thought it was going to be, I feel like you might sail through. This is doable, the big thing is whether it'll work or not, best of luck with that. Stay strong!
Easyflip/Richard
Doable no doubt. Going with one day at a time. Found some good mediation music that I popped on during the session. Need to try to make time for those things on other days and exercising (on pump detached days
) Actually took a couple of short walks. Except for the thing dangling from my side and feeling the port, I do not feel sick even with the little things. Still playing it careful on lifting things though. Surgery said 8-10 weeks and then port the same. Just have visions of this thing popping out of my chest - the movie Alien has taken on a whole new meaning 
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Careful
Please be extremely careful of anything even moderately cold. Cool beverages or even air from outside made that feeling of something in my throat turn to shards of glass and then couldn't breathe or swallow. It's really scary, so please consider avoiding cool things altogether while on Oxali.
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Bummer
Sorry - but it accumulates in your system and it will get worse. Be careful what you eat and drink. Sorry you are experiencing it so soon. I'm not sure if they put you on steroids with that but if they do you will experience days of not sleeping and then a crash after about three days. It's a total wipe out so be aware if you are on steroids that could happen. Hated that being awake for so long and not being able to sleep. If the numbness gets too bad tell doctor before next infusion because it can permanently stay with you like it has me. Keep up the great attitude with the nurses/doctors.
Kim
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Doing soTheLadySkye said:Careful
Please be extremely careful of anything even moderately cold. Cool beverages or even air from outside made that feeling of something in my throat turn to shards of glass and then couldn't breathe or swallow. It's really scary, so please consider avoiding cool things altogether while on Oxali.
I have left a bottle of water out on the counter, together with all other things I may want to drink. And even if it seems to be room temperture, I got caught with some that probably was still too cold. Outside when cool, I feel it, and it is just barely into session 2. (Just got disconnected a few hours ago from the pump.)
Going to take to weaing gloves if out in the evening. Just stepped outside to look at the moon and felt it after a couple of moments.
Was told after 5 days off, it is not as bad. But I am guessins that as it builds up, I should not be counting on it.
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Maybe maybe notNewHere said:Doing so
I have left a bottle of water out on the counter, together with all other things I may want to drink. And even if it seems to be room temperture, I got caught with some that probably was still too cold. Outside when cool, I feel it, and it is just barely into session 2. (Just got disconnected a few hours ago from the pump.)
Going to take to weaing gloves if out in the evening. Just stepped outside to look at the moon and felt it after a couple of moments.
Was told after 5 days off, it is not as bad. But I am guessins that as it builds up, I should not be counting on it.
The sensitivity to cold didn't last throughout my treatments. I think around treatment four, I could drink what I wanted and had no problem with the fridge. Of course, it was replaced by tons of other nasty stuff.
Sue - Trubrit
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SleptAnnabelle41415 said:Bummer
Sorry - but it accumulates in your system and it will get worse. Be careful what you eat and drink. Sorry you are experiencing it so soon. I'm not sure if they put you on steroids with that but if they do you will experience days of not sleeping and then a crash after about three days. It's a total wipe out so be aware if you are on steroids that could happen. Hated that being awake for so long and not being able to sleep. If the numbness gets too bad tell doctor before next infusion because it can permanently stay with you like it has me. Keep up the great attitude with the nurses/doctors.
Kim
A lot (for me) yesterday into today. Would wake up for a bit here and there, but then slept. Not exhausted, could do some things if I felt like it, but preferred sleeping. ALso got a bit cranky or cloudy, not sure if over slept. Took a nap for an hour and a half after I got home from pump being removed. Feeling okay, but for sure seems like a drain. Even typing now I feel a bit tired. Nothing horrific, but just want to lie down and watch TV.
I need to check what goes into the initial infusion in terms of steroids and anti-nausea.
Also started developing a rash on chest and face, photosensitivity kicking in.
This is all throwing a wrinkle into my plan of getting about half way through and an easier countdown
I am guessing it kicking in so soon is not good, even though I read it varies from treatment to treatment and person to person, well just bracing myself.But by the same token being here has helped me each step of the way in terms of being prepared for what could come, so I am not devestated, disheartened or the rest. Just heading into probably being on the shelf a bit the next 5 months (modern math, since I am unplugged from second session and each session is two weeks, I figure I am a month down
). Okay 5-1/2 months. Got NetFlix and other things.
The strange thing is feeling like I am not trying enough and taking advantage of this just to chill out. Other than feeling the port and seeing a bunch of scars I feel fine and that I am being a bit of a slacker
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I Will Take Sensitivity To Cold For $300 AlexTrubrit said:Maybe maybe not
The sensitivity to cold didn't last throughout my treatments. I think around treatment four, I could drink what I wanted and had no problem with the fridge. Of course, it was replaced by tons of other nasty stuff.
Sue - Trubrit
I am happy to stick with this sensitivity to cold based on the other things out there and what you had mentioned in that one post.
I am so happy you are past all that.
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That's amazingTrubrit said:Maybe maybe not
The sensitivity to cold didn't last throughout my treatments. I think around treatment four, I could drink what I wanted and had no problem with the fridge. Of course, it was replaced by tons of other nasty stuff.
Sue - Trubrit
Amazing and happy for you. For me, the jaw pain when taking a bite of food lasted only about 10 seconds; however, the shards of glass when swallowing was there for 2-4 days after every treatment. Once they pulled Oxaliplatin it subsided, but not before. It goes to show that we're all different. While I despised the shards of glass ( which I tried to sing in place of a Blondie song ), chemo brain was what I hated the most. After about 5 treatments I started stuttering, couldn't think straight and my mouth started hanging open as I wobbled around. I was very happy that all but the wobbling an neuropathy went away.
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Don't be hard on your selfNewHere said:Slept
A lot (for me) yesterday into today. Would wake up for a bit here and there, but then slept. Not exhausted, could do some things if I felt like it, but preferred sleeping. ALso got a bit cranky or cloudy, not sure if over slept. Took a nap for an hour and a half after I got home from pump being removed. Feeling okay, but for sure seems like a drain. Even typing now I feel a bit tired. Nothing horrific, but just want to lie down and watch TV.
I need to check what goes into the initial infusion in terms of steroids and anti-nausea.
Also started developing a rash on chest and face, photosensitivity kicking in.
This is all throwing a wrinkle into my plan of getting about half way through and an easier countdown
I am guessing it kicking in so soon is not good, even though I read it varies from treatment to treatment and person to person, well just bracing myself.But by the same token being here has helped me each step of the way in terms of being prepared for what could come, so I am not devestated, disheartened or the rest. Just heading into probably being on the shelf a bit the next 5 months (modern math, since I am unplugged from second session and each session is two weeks, I figure I am a month down
). Okay 5-1/2 months. Got NetFlix and other things.
The strange thing is feeling like I am not trying enough and taking advantage of this just to chill out. Other than feeling the port and seeing a bunch of scars I feel fine and that I am being a bit of a slacker
The fatigue and tiredness is expected. I see several people talk about how they worked through it and did fine, but I was in bed much of the time most days. I was always so tired with not much motivation to do things. Don't feel you're making an excuse to be lazy, it's just part of the deal. The drugs do it to you. Dealing with the pump and lack of sleep catches up. Rest, take the time you need, start doing what you can in spurts. I would (and still do) have to pace myself. I can do something for an hour and rest for a couple or I can push myself all day and be wasted for 2 days. I tend to be stubborn and hit the latter more often then not.
i also had the red rash/flushness on my chest and face. It would typically go away in a day or so as did the fever I would develop. They also didn't tell me to stay out of the sun up front. I got red from the sun at times, but also got incredibly tan as I swam and lounged around.
I hope things start to get easier, but more importantly I hope the benefit of the treatment is evident and outweighs the bad.
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Just Got Pump Disconnected - 3 down 9 to goSteve444 said:Don't be hard on your self
The fatigue and tiredness is expected. I see several people talk about how they worked through it and did fine, but I was in bed much of the time most days. I was always so tired with not much motivation to do things. Don't feel you're making an excuse to be lazy, it's just part of the deal. The drugs do it to you. Dealing with the pump and lack of sleep catches up. Rest, take the time you need, start doing what you can in spurts. I would (and still do) have to pace myself. I can do something for an hour and rest for a couple or I can push myself all day and be wasted for 2 days. I tend to be stubborn and hit the latter more often then not.
i also had the red rash/flushness on my chest and face. It would typically go away in a day or so as did the fever I would develop. They also didn't tell me to stay out of the sun up front. I got red from the sun at times, but also got incredibly tan as I swam and lounged around.
I hope things start to get easier, but more importantly I hope the benefit of the treatment is evident and outweighs the bad.
This session seems about the same or a little easier. Slight tingling. Sip drinks slowly and I am okay.
3 down, 9 to go.
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Getting caught up hereNewHere said:Just Got Pump Disconnected - 3 down 9 to go
This session seems about the same or a little easier. Slight tingling. Sip drinks slowly and I am okay.
3 down, 9 to go.
I've been absent for a few weeks - a longish story - so I'm glad I was able to get caught up on your progress here. All of the things you're experiencing are common with oxaliplatin patients. For me, the jaw pain when eating disappeared within a day or so of pump disconnect and then it went away completely around the mid-point of my treatments. Same with the shards of glass feeling in the throat, so I wonder if they're somewhat related.
I noticed the first bit of cold sensitivity my very first day on the pump with 5FU, and it was startling. Last March in Chicago, so it was probably in the upper 40s in the evening. I stood outside talking with a friend for a few minutes after a meeting, and when I got into my car I could feel tingling in my fingers. I'd bring this up with your oncologist and ask him/her about strategies for minimizing the onset of neuropathy. There are some techniques available that have shown some promise, such as wearing ice-cold mittens and foot wraps to force the blood away from your extremities during treatment. I know there's a strong Integrated Care unit at Memorial Sloan Kettering so they may well have some answers for you in this vein. Don't let this slide: attack it now to minimize the long-term damage.
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