June 2011 A/C & T Groupies Unite!

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  • ThingsChange
    ThingsChange Member Posts: 22
    edited June 2011

    Hi Bobbie Jo,  I too only get steroids on infusion day.  I was taking xanax before treatment and have continued at bedtime...I also have added a compazine as well so I think it knocks me out.  Are you feeling extra anxious (dumb question)? Maybe an anti-anxiety like ativan or xanax will help?

    Ask your dr and let us know what works...I'm sure many of us will lose more than one night's sleep thru this!!  Here's to a good day and sweet dreams for you tonight...Cheryl

    PS, if we don't complain here, then where?? Besides, if we don't complain we won't know how to help each other...complain away!

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  • 716bobbiejo
    716bobbiejo Member Posts: 140
    edited June 2011

    Thanks for all the feedback & for not minding my whining!  :)

    I'm getting a steroid during infusion, then I take 4 mg of Dexamethasone twice a day on days 2, 3, & 4 following chemo.  I'm on day 5 today, so not having to take any today may help me to sleep tonight.  I've not been given anything for sleep other than Benadryl.  I'm not really feeling anxiety of any sort, just can't shut down to get a good rest.  I'll call the onco. today & see what they recommend. 

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  • dsnydawn
    dsnydawn Member Posts: 175
    edited June 2011

    Hey Bobbie Jo, sorry about the sleepless nights, hope tonight is better!  Just wanted to ask you a question - I know that you are doing the taxol 1st than a/c..I noticed you are getting neulast shot the day after.  My schedule (doing a/c first) getting shot after a/c not taxol..do we get shot after 1st 4 treatments regardless of which one..or should I expect shots after all of my treatments??

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  • cider8
    cider8 Member Posts: 832
    edited June 2011

    I was given Ativan to take on infusion nights and as needed.  I've got a previous Rx for Xanax which I don't use often.  But I did last night!  I got my port today.  I don't think my nurse was very good at sticking.  She tried 2 places and both HURT.  And still hurt.  The first one was the same place as my first infusion, so maybe that caused some trouble.  I was given twilight anesthesia, but I don't remember anything.  I did wake up when they asked me if I could move myself from the table to the bed.  I just started laughing!  Because I didn't think I could do that.  The nurses said well laughing means no, so they moved me.  My port hurts mostly on my neck.  I hope that goes away pretty quickly.  I took a left over percocet.  Probably a bit too strong, but I needed some pain relief and brain relief.  My mind has just been way too 'on' and I need to relax.

    I shaved some of my hair over the weekend.  Sort of a mohawk.  Since the sides are more buzzed than close shave, my dark hair makes the change not very noticeable!  Ah well.  I had fun.

    I'm going to try the claritin this next infusion and hopefully I will do better than the first one.   

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  • FGCUfan
    FGCUfan Member Posts: 41
    edited June 2011

    I haven't slept more than 2 hours at a time since I developed fibromyralgia back in 1995 so I'm not sure I'll notice if my sleep pattern is distrubed!  Seriously some nights I don't sleep more than 2 hours total, less than 5 hours in 24 hours.  I've tried Benedryl, Ambien, Ativan, Xanax, & heavy duty sleep meds but nothing seems to work.  Guess that is something I need to discuss with onc this week,.  No anxiety - just no sleep!  Perhaps there is some anxiety about the chemo room.  It is a large open room with about 30 to 45 recliners, lots of folks, bright light, lots of noise & activity.  Part of my fibro is that noise, large groups of people with lots of activity, & bright lights cause my body to react to these stimuli as pain instead of what they really are.  I asked the chemo nurse if it's always that noisy & she said that the day I visited was realtively calm.  I hate to come across as a "demanding" patient, but I'm concerned that all these stimuli will cause me unnecessary pain that I'm not ready to handle.  The stress of cancer dx. & upcoming treatment  has already caused my fibro to have a flare when I've been in remission for several years  and the pain has zoomed from my normal level 1-2 to rise to 6-7 & I've had to increase my pain meds & decrease my activity level.  I visited another Cancer Center site where my onc  practices during my PET scan & talked with the head nurse.  It was much smaller, quieter, & they have a private room where I could be more comfortable.  The head nurse said was welcome to transfer there if it's ok with the onc so I'm going to ask at the 1st chemo appointment but it will mean that I have to change days of treatment.  Will it be a problem if I have to have my 2nd treatment 13 days apart instead of 14 days?  I'm sure I sound like a bitchy old broad but I'm not usually.  I just don't want this chemo to make my fibro worse than it already is.  Previously the pain became so severe that I had to use a cane &/or a walker and I do NOT want to go back there.  The pain is enough already!! 

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  • Beaglesgirl
    Beaglesgirl Member Posts: 287
    edited June 2011

    Hi everyone, I'm laura. I started a/c t in April. I am doing dose dense AC and it has been an arse kicker for me... I too have fibromyalgia and have found the nuelasta shot to get me down for a full 4 or 5 days. I start my taxol mid July and am really hoping that it's easier than this AC!

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  • marial
    marial Member Posts: 255
    edited June 2011

    I slept well during my 4DD AC but haven't slept well since I started taxol..not sure it is due to taxol or the chemopause..I'm 43

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  • dsnydawn
    dsnydawn Member Posts: 175
    edited June 2011

    Well back from my 1st infusion!!! 1 down & 7 to go..... my port was wonderful (put numbing cream on 1hour b4) was able to draw blood,which is a bonus...  I did notice I was a little light headed during treatment and feel a little groggy (almost like when you have sinus problemes) stop for lunch on our way home and also picked up claratin and maalox..I have noticed since I was in the chair my stomach was "talking" to me and after lunch and in the store I had really bad gas...uh uh gotta run to bathroom....yikes  talk to you later 

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  • dsnydawn
    dsnydawn Member Posts: 175
    edited June 2011

    sorry..wasn't gas haha but my stomach is still talking...starting to get a little headache(slight) think I might just take tylenol to stay ahead of it??  I got 12 mg of steriods ,hopefully I'm able to sleep tonight.  If not the nurse told me to take the ativan and that should help me. Well it has been pouring here all day and it seems like a perfect time to just hang out on the couch with the remote!!! Hope everyone is doing good today...

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  • 716bobbiejo
    716bobbiejo Member Posts: 140
    edited June 2011

    Dawn, Love your humor!  My stomach has been "talking" the past 2 days now.  The first round of chemo I had constipation.  Now the pendulum has swung the other way!  I just took 2 Immodium, so I'm hoping that will kick in soon.

    As for the sleeping, I did get a script for Ambien.  Took one last night, but it did very little.  I'll admit there were other factors in my sleep last night.  It was super muggy here, so we let our son sleep with us in the air conditioning.  He moves around a lot, & although he's super cozy, I never rest well when he's in bed with us.  Additionally we had a huge thunder boomer in the night. Again, it was cozy, but kept me awake.  I also may have experienced my first hot flashes last night.  I can't be certain because, like I said, it was super muggy.  But, I was so stinkin' hot that I was sweating bullets! Praying for a better night tonight.

    Today, day #6, I'm feeling a bit of joint pain in my legs.  I'm also getting little spurts of lightheadedness, but they go away as quickly as they come.  All in all, not a great day, but thankful that things aren't worse!  

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited June 2011

    This is day 8  for me.  My mouth is sore, and I've been rinsing with a baking soda/salt solution every few hours.  Otherwise, I'm not feeling too bad.  My daughter and grandkids came for a visit, and I picked up my mom and brought her to the house for a visit (it's a 90 mile double round trip).  Now I'm ready for a nap!

    Michelle

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  • cider8
    cider8 Member Posts: 832
    edited June 2011

    I had round 2 AC today.  My onc was pissed someone dropped the ball getting my heart ultrasound done.  After the infusion I went to the hospital heart center for the ultrasound.  Long day.  I feel OK.  Port did OK.  I didn't use numbing cream.  My nurse just had me count to 3 and exhale while she did her stuff.  I didn't feel it.  My red blood cell count was down enough for me to feel the fatigue.  I have proof it is real!  Neulasta did it's job well.  My sister shaved the rest of my hair today.  So weird.  It started falling out yesterday, day 14.  I'm making lemon chicken rice spinach soup.  I was craving it last time so this time I'm making sure I have it for the weekend.

    Keep on rockin, ladies!! 

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited June 2011

    Paula - glad to hear you didn't have a problem with the "stick" in the port.  I didn't get a script for the numbing cream, thinking I'll ask for it if this one hurts.  I'm guessing it's not that much of a big deal. 

    Michelle

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  • panamajayne
    panamajayne Member Posts: 136
    edited June 2011

    FGCU fan,  sorry to hear you cannot sleep.  Have you tried taking Melatonin? Good luck

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited June 2011

    Melatonin just does nothing for me.  Restoril (Temazepam) has been most effective for me. 

    Michelle

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  • Beaglesgirl
    Beaglesgirl Member Posts: 287
    edited June 2011

    I continue to struggle with the SE but today I really hit a brick wall with chemo brain. It's bad, I have blank spots in my short term memory within moments of being told something.



    Any suggestion? I have my 4th and last DD AC on Tuesday, hoping it improves with taxol?



    ~L

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  • FGCUfan
    FGCUfan Member Posts: 41
    edited June 2011

    I've taken Melatonin, Ambien, Restoril, Ativan  & now I'm ready for a big hammer!!  Tomorrow is my 1st chemo.  Surgeon checked the port today & said it looks good, also got my new bras, camis, & perky fake boob this afternoon.  So  if nothing else, I'll look good tomorrow. 

    Here's hoping we all sleep well tonight. 

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  • mama1050
    mama1050 Member Posts: 10
    edited June 2011

    I have been on Taxol since February 5th.  First 12 weekley treatments and now on my second 12 weekey treatments.  Finished treatment 19 today.  I use the numbing cream and it helps.  Only cost $10.. for a tube

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  • brca1babe
    brca1babe Member Posts: 75
    edited June 2011

    anyone able or planning to work during AC?  I was hoping to go in part time.  Am I totally unreaslistic?

    I start DD AC next week.  It hasn't sunk in yet.

    I am doing cold caps too, let's see if I can keep some hair.

    skr/brca1babe

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  • ThingsChange
    ThingsChange Member Posts: 22
    edited June 2011

    Hi brca1babe, I got my first treatment last Friday...I went to work this week - part time also, 3 full days.  It was doable.  Was tired by end of day.  Some people work straight thru, depending on how your side effects are.  Mine were really under control this time...I'm nervous about my next treatment though, this is my week off. I have my treatments on Fridays.  I couldn't have worked that weekend but I was an emotional wreck so that didn't help!!  Good luck to you, hopefully your SE will be minimal. 

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  • elinruby
    elinruby Member Posts: 17
    edited June 2011

    I did four AC treatments, one every two weeks and go in tomorrow for my eighth of twelve weekly Taxol infusions. What I can tell you guys was that I was just really, really tired, like I had to jumpstart myself to take the trash out, and I slept at least 18 hours at some point soon afterwards. I was worried about the potential for heart side effects, but my son and brother in law were pretty good about helping out with anything that required muscle. If you have people willing to help you, I would say that AC therapy is the time to call upon them. Your mileage may of course vary.

    Here's what I would like to know: is weekly treatment the "dose-dense" regimen? Or does it depend on the dose? (duh?) Google is telling me Taxol is usually administered every three weeks. Is that just old information?

    Oh and one more thing I wonder: I am overdue for a colonoscopy and since I am not having symptoms (of polyps) I am way way down the waiting list? Would this regimen work on precancerous polyps in the colon (let's say) if I were starting to develop some?

    thanks 

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  • elinruby
    elinruby Member Posts: 17
    edited June 2011

    brca1babe, depending on what you do and hw much control you have over the situation at work you *might* be able to get 3 or 4 days in a week? I was able to do some writing. Slowly. Chemo brain was a problem, yes. Still is a little, but at least it's not usually as though my brain just locked up anymore. I forget words and names I know very well, which can be embarrassing in conversation, but at least the thought processes are happening..

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  • Merilee
    Merilee Member Posts: 3,047
    edited June 2011

    http://www.breastcancer.org/search.jsp?terms=chemo+brain

    Chemo brain is very real. Look here to learn more about it and plan for it especially if you are working. You can share this info with your boss to ask for accommodations.

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  • ThingsChange
    ThingsChange Member Posts: 22
    edited June 2011

    elinruby/others, side effects are cumulative, would you agree?  I really felt pretty good after my 1st treatment but am nervous going into #2.  I am especially concerned about nausea, I did keep that under control this week and tolerated treatment pretty well.  Does the nausea get worse with each treatment??  Thanks!! 

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited June 2011

    Geez, what's with this delayed nausea?  I was pretty good during the normal rough days, and had just a little bit of nausea.  Last night (day 8) and this morning, I am sick as a dog.  And I have a headache to boot...I never get headaches! 

    I guess I'll be taking it easy today.  Took a compazine this morning already, so I'll be snoozing in a while!

     Michelle

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  • elinruby
    elinruby Member Posts: 17
    edited June 2011

    ThingsChange, which drug? I think I would say so for AC. I felt pretty good, maybe in comparison, after they swiched me to Taxol. For the first say five weeks after that I felt pretty good considering. The last few days though..felt ok, felt bad, felt ok. Then felt blah. It's been ridiculously hot as well though, so I'm just keeping on as best I can, getting myself to chemo. We'll see. 

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  • ThingsChange
    ThingsChange Member Posts: 22
    edited June 2011

    I am just on AC right now...only 1 treatment so far!!  I am doing a total of 4 AC, every other week, then 8 taxol every week.

    Michelle, tell me it isn't so...you've been my inspiration...hope you feel better soon.

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  • Merilee
    Merilee Member Posts: 3,047
    edited June 2011

    I have not found a pattern or a rhyme or reason for alot of the side effects that come and go. I just take a remedy as soon as I have a hint of something coming on and that has seemed to do the job for the most part. fatigue is for sure cumulative as is chemo brain. My onc recommended Bcomplex for fatigue and but no answers for chemo brain.

    I am only on TC infact I finished yesterday.

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited June 2011

    ThingsChange - it is possible that I have the stomach virus that all three grandkids had over the past two weeks.  We know the kiddies are petrie dishes...lol.   I'm going with that for the moment!   Just managed to choke down a piece of toast, and I'm sipping iced tea.  Had to dump the coffee.  Things seem to be settling down, so hopefully the worst is over.

    Michelle

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  • brca1babe
    brca1babe Member Posts: 75
    edited June 2011

    I hope to go in to work halfdays here and there on DD AC.  Hearing that some could do it gives me hope.  Maybe I am fooling myself.

    Is there any pattern to fatigue or SE?

    What I mean is, do you feel worst the days immediately following infusion or is it a week later, etc?

    I would like to plan for extra help with my son, house etc and don't have a lot of family or friends nearby, so can't just call anyone last minute.  If I could plan for which days I might need the most help, that would be a relief.

     sigh.

    skr/brca1babe

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