April/May 2012 Chemo hang out

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  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited April 2012

    7donatela81, it was indeed a bit harder than I thought.  I tried to do it too slow (scared).  Uh, that hurts more!  Figured that out after 2 failed attempts.   I had to get over it, put it in a bit faster...easy after I got past that mental block...but I completely understand the squeamishness!  My DH couldn't even watch me do it to myself...guess I was on my own, LOL!!! 

    I did the Claritin with mine and had minimal to no SE with the Neupogen.

    I'm hoping to switch to Herceptin only routine every week instead of the larger dose every 3 weeks with the chemo.  I think it will be kinder, gentler to my body that way.  Seeing if I can work out the schedule with the onc office.  Glad to hear you did well with  the Herceptin only!  

    My onc is waiting for my hair to fall out.  I'm doing the cold caps.  Fingers crossed...too early to tell (I'm on day 14 post my 1st TCH.)   The hats with bangs sound really cute!  I love bandanas.  If I lose my hair I'll likely do that a lot.  100 degrees already out there?  Wow!  I thought Calif had milder temps in the spring.   

  • kjiberty
    kjiberty Member Posts: 1,385
    edited April 2012

    I love this forum. I have learned so much.  I am tired, still don't have much of an appetite since my first T/C treatment on 4/19.  My stomach is constantly rumbling.  Maybe Pepcid?  Any thoughts?  Went wig shopping with my hairdress yesterday.  Many tears were shed, but it wasn't too bad looking.  She will cut it short on 5/4 (15 days from first treatment), so I can be "wig-prepared".  I am not getting any sleep, even with the ambien (10mg).  I sleep for maybe 3 hours, and then am up for another 2.  Any suggestions?  

  • lisak7290
    lisak7290 Member Posts: 146
    edited April 2012

    Last Chemo Today!!!!!!!

    Yes I am so happy it's over. I have a lots of questions to ask him about while taking tamoxifen.

    Decided to go commando aka bald to this last one. I really hate wearing the wig. It gets to itchy banadna's are ok and it's what I wear mostly.

    Have a good day ladies.

  • kjiberty
    kjiberty Member Posts: 1,385
    edited April 2012

    Congrats, Lisa!  

  • IndigoMont11
    IndigoMont11 Member Posts: 1,095
    edited April 2012

    kjiberty - hmmm.  I'm taking Ambien too; mostly because since my surgery last month, I can't stay comfortable enough to sleep very long.  With the Ambien I can usually get up to 5 hours of sleep in.  I'm taking a different chemo cocktail so I don't know a whole lot about T/C and its SEs; maybe ask the doc for a different sleep aid?  Sleep is definitely important, no question about it!

    lisak7290 - whoohoo!  Soooo happy for you!  I am trying not to think in terms of  "1 down, 7 to go..." but I know I'll get there, too.  

    Today is day 5 of tx 1 for me.  Time seems to be crawling.  The dry eyes have been so bad after sleeping that even the Refresh gel drops didn't do a whole lot.  Dry mouth was pretty bad at first too, on getting up, but Biotene mouthwash and chugging water seems to help a lot.  Feeling a bit wispy today; guess I'm heading downward toward nadir.   I'm going to put on sunblock and get out soon - it is another totally gorgeous day here (with apologies to our friends buried in snow up in the Northeast!!).

    Melrose, thinking about you today!!!

  • Stacie
    Stacie Member Posts: 607
    edited April 2012

    There are so many of us here now I can barely keep up on who said what. I am on neulasta so for those of you who have daily shots and can't give them to yourself or your hubby can't, perhaps you hve a neighbor or friend.  I have a nurse right down the street.  Years ago I took three shots daily for infertility.  My husband could give them to me, but they were sometimes due when he was at work.  I totally found a host of volunteers. 

     Chemo #2 yesterday.  I don't count chemo as "another down" until I am past the worst SE", and then it's down.  Told my hubby too.  I HATE the WIGS and Scarves.  I have the most sensitive head.  You should have heard me squeal when my mom would brush the rats out of my hair as a child.  I am ROCKING the bald look and LOVE it.  I will wear the wig for work but only have to do that about 1x per treatment because I work at home save a few business trips.

    I am thinking of ALL of you today.

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited April 2012

    kjiberty - I'm not doing your regimen (I'm TCH), but at 5 days post chemo I was still feeling really yucko. Pepcid may help, but talk to your doc, too.  Adding Pepcid to my Prilosec didn't cut it for me.  He told me to stop trying to wean from my Zofran too early (I ended up taking it a 8 - 9 days post chemo on schedule).  He also put me on Protonix (a proton pump inhibitor that was stronger than my regular one - I normally have reflux issues).  AND, he put me on the magic mouthwash to fix my thrush but it also has maalox, lidocaine, and benadryl to soothe the mouth and irrritated esophagus and tummy.  All these changes made a remarkable difference in my comfort level.  

    Sleep was an issue for me as well, but I was trying to avoid using sleeping pills (Restoril).  Once I started giving in and taking them, I slept much better.  Even if I woke up to use the bathroom (yippee, too much of that), I found I could fall back asleep better.  The rest made such a difference.  perhaps your onc can prescribe something additional.  It is worth taking something that works.  The sleep helps your body heal and bounce back quicker.  I just set an alarm to get up at 6 hours and take my Zofran, so that I wouldn't have breakthough symptoms.  Then I'd go back to sleep.

    Huge congrats Lisa!  I so cannot wait to be PFC!!! 

    Indigo - gargling with 1 tsp baking soda in 1/2 cup of warm water 3 to 4 times a day helped me some.  Once I got thrush, though, I had to move to a prescription mouthwash, which was awesome. 

  • IndigoMont11
    IndigoMont11 Member Posts: 1,095
    edited April 2012
    Yep, been doing the baking soda thing and *hoping* no thrush or mouth sores.  So far, so good - only thing I've noticed is a little bit of a sore throat, and I'm trying to keep on top of it.  Smile
  • kjiberty
    kjiberty Member Posts: 1,385
    edited April 2012

    I go back to the doc on Wednesday for bloodwork and a visit with her.  Does anyone take lorazapam for sleep?  I do have an rx for it, and was just wondering if it would help. I only took it once, 1/2 hr before my first treatment.  

  • petagae
    petagae Member Posts: 58
    edited April 2012

    kjberty. I took lorazapam for sleep two years ago and it worked like a charm. This is after trying 3 other sleep meds. It helps you get to sleep and stay alseep. I did ask my MO for a script today while doing my chemo teaching.

     I know a lot fo ladies here have already started chemo but I wnated to knwo what your biggest suggestions are since i'll be starting next week (TC)? I see some mention on lemonheads but i wasnt sure what it was for.

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited April 2012

    I forget who asked about dry eyes before...but I'm joining you in that complaint.  I looked it up in my notes and the brand of eye drops recommended by another bc girl is the lubricant eye gel or drops by GenTeal.  I got the gel for severe dry eye relief.  So far, ahhhhhh.  Much better.   Not cheap, but worth it if you are streaming tears all day! 

  • kjiberty
    kjiberty Member Posts: 1,385
    edited April 2012

    Thanks for the lorazapam suggestion, petagae.  I am going to try it tonight.  I just can't take another day/night with no sleep.  

    First, I would probably go wig shopping before chemo starts (I waited 5 days it was traumatic enough)  I still haven't purchased on, but it will be done by the end of tomorrow.  Drink PLENTY of fluids before, during, and after treatment.  

    My chief complaint has been my stomach and lack of appetite.  My stomach keeps churning.  Is there anything to take for this that actually helps?  Thoughts, please? 

  • petagae
    petagae Member Posts: 58
    edited April 2012

    My doctor actually prescribed Bentyl for cramping. I have a loveley list of 5 drugs i am supposed to get before I get started.

  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited April 2012

    Petage - I'm not doing your regimen but in general my biggest suggestions are:

    • make a packing list and pack your "chemo bag" the day before and a cooler with food, ice, etc. the morning of 
    • from your packing list make a "to buy" list and go shopping for those items the weekend before
    • take/wear warm clothes and an electric blanket if you are icing (if the icing the mouth make sure you get behind the lip and roof of the mouth...mouth sores there = OUCH).  I plan to take crushed ice this time, not chunks.  
    • take a computer and movies if you like them
    • buy a bunch of frozen meals to have in the freezer so you have easy prep for meals when you aren't feeling well; also consider Ensure Protein plus for times when you can't get much food in but need nourishment
    • take your antinausea meds on schedule and don't wean too early
    • consider probiotics to keep digestive system moving.  If you get constipated, do not overmedicate...use something gentle like Miralax if ok w/onc...you may swing the other direction and don't want to make the big D worse!
    • if you notice your tongue getting white it's thrush - get a script for Nystatin mouthwash ASAP 
  • dancetrancer
    dancetrancer Member Posts: 4,039
    edited April 2012

    kjiberty, did you see my previous post to you about stomach stuff? 

  • kjiberty
    kjiberty Member Posts: 1,385
    edited April 2012
    Thankm Dance....  I missed it.  I appreciate your advice!  Embarassed
  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited April 2012

    My first infusion went fine today--- it jsut lasted longer than I thought it would but not unsual for the first time.  I had usual blood draw and weigh in before they would even order the chemo cocktail from the hospital pharmacy (std. procedure).  Since is the first time my port was being used, it had to flushed a few times .  A funky taste when the port was flushed but tolerable.  During the Taxotere portion, I iced the  toes and finger nails which I had to keep on for at least 1 1/2 hr (15 minutes before, 1 hour during and 15 minutes after).  Then they switched over to the Cytoxan for 30 minutes.  After that, I had a 90 minute Herceptin infusion.  The nurses and staff took wonderful care of me and explained everything about the drugs, infusion procedures.  I did get extra drugs to help durring the infusion- Zofran, Activan, tylenol and Benedryl.  I dozed off in the car on the way home and came home and slept.  So now I just need to keep resting and wait to see what SE's I get.  So far so good, knock on wood. 

    I also had a private mini session with the Look Good, Feel Good ACS program.  I got the make up kit plus a wig.  I certainlly wasn't expecting the wig but it's cute and who knows if and when I will wear it. 

    Petagae- Lemonheads were suggested by Stacie for that funky tastes that may show up during the infusion process- they are an alternative for lemon drops and other hard candies. 

  • IndigoMont11
    IndigoMont11 Member Posts: 1,095
    edited April 2012

    Glad to hear it went okay today, Melrose! One in the books and we'll keep plugging forward. Hugs!,

  • IndigoMont11
    IndigoMont11 Member Posts: 1,095
    edited April 2012

    So I'm kind of crashing today after the steroid high, but I still managed to clean out my fridge, put out trash, and make omelets and potatoes before napping after lunchtime. I'm scheduled for port placement on the day before my next treatment.



    I sure hope the volume goes down on the tinnitus - trying to ignore it.....

  • LisaG65
    LisaG65 Member Posts: 65
    edited April 2012

    @stacie i love your additude! i was just pounding my timeline on FB with music from youtube, skullcandy headphone on as not to disturb the house. i took a new profile pic today before i went in for TCH # 2. later i  took my son (he's 12) and i out to dinner at our fav mexican joint. i had a golden margarita with salt. first drink i have had since 3/27. i have drank sooo much h20 today!

    funny story, i like to go to chemo comfy so i bought a several pairs of yoga pants, gray black... at the center between the infusion and the water i was drinking by the  3rd time i peed i noticed that i had them on backwards!! i looked down there was the tag in the front, such a goof ball , i laughed to myself and wondered how the front held so much of my junk in the trunk, i didnt even switched i just carried on!! soo funny. i took a chef salad with me to much on and was glad, time flew by this time.

     my wbc on 4/17 after neupogen was 12.7 today before infusion it was 4.9

    my ang on 4/17 "    " was 9.3 today was  2.9

    my last neupogen shot was on 4/13.  this shows chemo was still working even after my counts were back up. :) i asked my onc. what the plan was. i wondered when i would have surgery...

    i only spoke to my bs once before chemo. onc told me his plan is for all 6 of the TCH then when i recover fom nadir after 6th, i will have surgery. then about 2 weeks after will start my herceptin. so last chemo is end of july. i guess surgery will be in august. i am having the steroid rush, facial skin feels flushed not a hot flash, tender skin like sunburn. i took a xanax at 9pm hasnt put a dent in my zoom :)

    i had a nice spot and nice nurse today. i was in the corner with the wall on one side and a table and a window had my compter and water on it on the other. no one ever sat next to me, a few women and people that passed spoke, smiled and nodded, one woman stopped to tell me how beautiful i was (blush) i watched paranormal activity 3 it wasnt really all that scary. i had a pink flannel sheet over the recliner and a quilt from home, 2 of my smooshie pillows i was set.

    im ready to see what the next few days will bring :)

    does anyone know how to add pics, i see a place to add them but it doesnt let u upload from your computer. thanks in advance good luck to all!!

    remember this...how do you eat an elephant? one bite at a time. dont give up!!

    i love my bald head, i love walking around in public with a bald head, thats just me.

    peace to all over the next couple day. 

  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited April 2012

    I did not sleep very well last night but I don't know if it was nerves or the Decadron.  Now I'm really sleepy now from the Activan and Benedryl and not so sleepy because the second daily dose of Decadron.  Glad for that port!!!! Make sure you get some EMLA cream to numb the area once the port is put in.  You may have to ask if you can have it since you are just getting your port in.  if not, they can always spray something on it to numb the area.

  • IndigoMont11
    IndigoMont11 Member Posts: 1,095
    edited April 2012

    Thanks for the tip - I will ask about the cream.

  • sandik
    sandik Member Posts: 482
    edited April 2012

    I got the call today. Report at 9am for my treatment. So I'm not really sure. Nobody gave me a tour or told me exactly what was going on. I said I'm starting tomorrow? She said yes. I said how long will I be there? She said 2 hrs. That doesn't sound right. Does it? Chugged water all day just in case. I am ready to float away. I jumped up to pee and the dogs all came running, tripping me up. I almost wet my pants trying to get to the bathroom! Haha

  • Zarasbaba
    Zarasbaba Member Posts: 103
    edited April 2012

    Hello ladies, I'll be joining this club in about a month, so I'll be staking this thread!!!

  • SadeSurvivor25
    SadeSurvivor25 Member Posts: 119
    edited April 2012

    @ Sandik, that may be correct. I'm having AC x4 every 3weeks and my first treatment was 2 hours. About 30min of it was a video about chemo. I go Thursday for round 2 which probably shouldn't be that long. Good luck!!

  • cconner
    cconner Member Posts: 6
    edited April 2012

    Hi there! I am also triple negative. I had BMX in Jan and a port placed in early February. I started my chemo Feb 24th. My chemo is TAC every 21 days. I had the option between that or the AC then T. I am now halfway through my chemo regimen and will have my 4th of 6 total treatments this Friday. The port is amazing. If you haven't gotten your port yet and are planning for one, ask for a power port; that way it can be used for CT scans too. I am also so glad that I chose to have 6 total treatments. After the first treatment my onc didn't schedule me for a follow-up until 5 days later. I felt fine for the first day and a half or so, then I couldn't eat and was had awful nausea (lost 8lbs). At the follow up, I got IV fluids and nausea meds. Since then, I've been going in for rehydration a few days after my treatment and I've been doing great. The last 2 treatments have been much better. They also added emend. Don't hesitate to call your onc or onc nurse after your chemo if you're feeling like crap. They've been very insistant that I come in if I need extra fluids. It's amazing how much it helps. Good luck to you all!

  • NWArtLady
    NWArtLady Member Posts: 360
    edited April 2012

    Hi ladies!  Just stopping by to say hi and that you can do this!!  I finished AC+T December 2011 and am now doing Herceptin and will be starting Tamoxifen soon.

    The best advice I received was to exercise every day, even if it is only a walk to the end of the block. I did and it SO helped get me through chemo and radiation.

    I noticed some of you talking about thrush in the throat: I rinsed after every meal with a little bit of baking soda in water (swish and spit) and the white spots went away and stayed away.

    Good luck!!  Remember to moisturize often!!

  • Lynnbea
    Lynnbea Member Posts: 20
    edited April 2012

    Good morning ladies (and men, if there are any here),

    I completed TC #2 on Monday without a hitch. Received the Neulasta shot yesterday to boost white cell count. Remembered to take the Claritin on Monday and so far, so good...no aches. Thanks so much for that wonderful tip (and for the reminder to take it the day before).

    Decided yesterday to take the plunge and buzz my head. Pickd up a couple of scarves and a hat but after getting all the hair cut off, I actually like it bald. Now if I could get the Michigan weather to cooperate with my bald head. It was 80 degrees in March and it's now 50 degrees in April. Could Mother Nature be going through menopause?

    Melrosemelrose: you might want to take that second decadron earlier in the day, like 4 or 5 pm so it doesn't interfere with your sleep as much. 

    Lisak7290: congrats on your last chemo

    The sun is out here...so have a bright, cheerful, sunny day!! 

  • Stacie
    Stacie Member Posts: 607
    edited April 2012

    Yay Lisa and Lynn my fellow bald head bearers. I got my neulausta yesterday and went to the mall before my steroids wore off. My ALND makes my arm feel funny rubbing against itself. I found two gorgeous summer dresses with short sleeves. And they looked good with my head! I thought dangly or hoop earrings would look best but learned studs with an ample earring look better because you can see them face on. It adds femininity. Stole it from the rappers. Bought a starter wardrobe of those. And two new pair of shoes. When I came out my hubby had called then texted checking on me worried and thinking i was napping. "Sorry I missed your call honey I was in the dressing room ar Dillards". LOL

    Day 2 post chemo so expecting SEs soon but savoring until then.

  • IndigoMont11
    IndigoMont11 Member Posts: 1,095
    edited April 2012

    Hey all! 

    Do you know if you can get those GenTeal tears at the drugstore or do you have to order them?  I never knew that dry eye could actually hurt!  At least, though,last night and today I can work up some tears if I blink a few times, and this morning I didn't wake up with the dry mouth like I have the last few days.  Still spotting (period) though, dang it!   That whole business is in large part why I was never a huge fan of birth control pills back in the day.  I did love the comment about Mother Nature going through menopause, lol.

    On the other hand, the last few days I have done so much better after the BMX.  I can just about raise my left arm all the way up and I can put away my mixing bowls and stuff on my own without waiting half a day for someone else to get around to it.  Wink Stacie, my arm still has a weird numb area down the back of it too, which I guess will probably be more or less permanent, but compared to a month ago. I've even been able to sleep (mostly comfortably) on my left side.

    On the A/C they are having me take both decadrons in the morning (together).  The only one I had to take both a,m. and p.m. was the zofran.  However, I did notice that when I switch to the taxotere, I'll be taking the decadron a.m. and p.m.  

    I had a dream the other night (rare in itself since I haven't been sleeping that great) that I had breasts again.  It wasn't as if the BC, etc., had never happened - it was as if I'd slept through everything since and had the "rebuilt" ones.  Granted that I don't really know exactly what implants feel like, but in the dream, they didn't feel like my original ones, were more soft and squishy - and I remember thinking, hmmm... thought I was going to ask for smaller ones....

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