April 2010 starting chemo

Options
1…89111314…41

Comments

  • caltex_catlady
    caltex_catlady Member Posts: 136
    edited May 2010

    Hey arubajan05: Yes, I've got mouth dryness, although it hasn't been too bad. I've been using Biotene and drinking a lot, like you. Sometimes I get short relief from eating popsicles or yogurt--something cooling that lingers on the tongue. Dry foods (crackers, etc., that I like to have in case of nausea) are tough. It was like this in round 1 as well but seemed to get better at this point (about halfway through the cycle).

    My DH buzzed my hair yesterday (which was more traumatic than I thought it would be beforehand but not bad once we actually started), and the remainder is really coming out now. I also have scalp tenderness, which makes it hard to rest my poor little head on a pillow. I'm actually hoping the rest of the hair goes soon so I don't get the pricklies when I lie down. Right now it looks like a *really* bad haircut with some bald spots. Not feeling my cutest, that's for sure. I have a light turban to wear around the house, but even that seems to stress my follicles, so I'm going around as is.

    Karen

    · Share on FacebookShare on Twitter
  • DancerMel28
    DancerMel28 Member Posts: 122
    edited May 2010

    HI everyone,

    well i must say i was pleasantly surprised - I had a fairly good weekend, a little tired at times but ate normally and didnt' really begin feeling any SEs until last night.  So far just feeling a bit sore around the neck and throat - def got the dry mouth so trying to keep the fluids going.  I am surprised that my hair feels prickly around the nape of my neck already - thank heavens I took the advice of others and got a satin pillowcase, was comfortable to sleep on that's for sure. We'll see what the next few days bring. 

    Mel

    · Share on FacebookShare on Twitter
  • shygal
    shygal Member Posts: 89
    edited May 2010

    Arubajan05 - I definitely had a very dry mouth and I think that's what caused the Thrush that I got on about day 8.  I had to get a presciption for it, so if your tongue gets white and you lose the feeling in the roof of your mouth, you might want to call the onco office to see what they can do.  I think that thrush is sometimes caused from dry mouth so it's pretty common. Doesn't hurt but annnoying.

    Just getting reading to go to TX#2 and really do not like the Dexamethasone premeds.  They make me feel very wonky.  I'm feeeling a bit bummed out knowing I'm going over this whole process again, but what can you do.  Today will put me at the 1/2 way mark, so I can't complain.  I hope my WBC is okay or I guess there'll be a delay.

    Some of my hair is hanging in (all 1/8th inch of it!) but very naked on the sides of my head where you can see the veins in my scalp - lovely.  Very sore at times but that's been going on for at least 5 or 6 days so not sure when all the hair is going to be gone.  At least point, I'd wish it would go since I'm getting little hairs all over everything - clothes, dishes, sinks, face, shower etc.

    Good luck to everyone today.   

    · Share on FacebookShare on Twitter
  • Pickles
    Pickles Member Posts: 80
    edited May 2010

    Hi all!!

    Good luck today Shygal I'm two days behind you.  Second Tx wednesday.  I'm getting a little anxious too!  Have they given you anything for the jitters while taking Dexamethazone.  I have Ativan and it helps with the jitters and is good for mild nausea.  It's often given to people with anxiety and really has a calming effect that also helps you sleep.  I told my onc about my pre-jitters at my first tx and he wrote the script and put it into my IV pre med mix.

    Caltex-

    I had my sis-in-law buzz the rest of mine off on Friday.  I'm in that strange state...things "down south" are shedding like crazy but my head hasn't started.  I had it buzzed because I really do not want to deal with it when I'm feeling like a chemo zombie later this week.  I had a lot of sensitivity with my buzzed hair too.  I got two "Buffs" before I started treatment and they are awesome.  Search "Buffs head covers" on the web.  They are super soft tubes of material with NO SEAMS!!  they come with simple directions on how to tie them to create a bunch of different looks.  The ones I got are made of wicking fabric...to get rid of the sweat on your bald head, and I also ordered mine with a UV protectant in the fabric.  It was $24.00 per piece, had tons of different designs too!  I slept in mine the first night and A) it stayed on B) it really helped keep the Ouch under control!  I found out about them from my friend who has been battling Hodkin's for three years.  Oh...almost forgot...they are machine washable too!  I thought it was a bit pricey for a tube of material but I wouldn't be without one now.

    Aruba-

    Hope your Dry mouth is getting better.  I haven't had to use it yet but Biotein also makes a mouth moisturizer.  It's different than the mouthwash and should be available at a pharmacy OTC.  You might want to call your Onc too, just to make sure they know and they may have a suggestion or a Rx to help.  Don't be shy in calling your onc!!  They are there for you and need to know about your SEs They should be more than ready to help you feel better, it's their job!

    Can you tell I adore my Onc Doc and the entire staff!  Thank God for them...how they deal with this kind of pressure every day, I have no idea but we are soooo lucky they do!

    Wishing you all a comfortable SE free week!

    · Share on FacebookShare on Twitter
  • kad22
    kad22 Member Posts: 191
    edited May 2010

    Hi All well got through the weekend with hardly any SE's but now I have the worst Hemmoroid ever! Called the onc. nurse but she didn't think there was anything to do besides the sitz bath, PH. Any other ideas? Oh boy does it hurt!

    Thanks,
    Kelli

    · Share on FacebookShare on Twitter
  • caltex_catlady
    caltex_catlady Member Posts: 136
    edited May 2010

    Hi Pickles: Good suggestion about the buffs. I had actually picked up a few based on someone's recommendation but haven't tried them yet. I was afraid they'd be too snug while my scalp is still so sensitive. I figure the "Saharine" style is what I'll go with. Totally easy to put on.

    Karen

    · Share on FacebookShare on Twitter
  • Pickles
    Pickles Member Posts: 80
    edited May 2010

    Caltex

    I'm liking the "pirate"  except now my hubby is looking for a stuffed parrot...he dared me to wear it into the Tx room, with the parrot on my shoulder...My Onc would love it, he's got a crazy sense of humor.  I might need to find an eye patch with the skull and cross bones too...

      After I put my Buff on my head I lifted the scarf up just a little and smoothed my hair underneath it back in the direction it wants to lay.  Does that make sense?  I hope that helps you sleep!

    Kad22

    Have you tried Tucks pads?  My Mom swore by them when she had hemeroids.  They're OTC so easy to get.  I'd do the bath first though.  Sorry you have to go through this!  Big hugs on the way to you!

    · Share on FacebookShare on Twitter
  • arubajan05
    arubajan05 Member Posts: 140
    edited May 2010

    Hi!

    Pickles ~ I too heard about the Original Buff from my friend who had chemo a few years ago.  I ordered the "Henna" just last night.  Glad to hear it is working for you!

    Kad22 ~ Last week I was in SO MUCH PAIN in the posterior.. Mine was not a hemorrhoid but an irritation from the burning diarrhea I had immediately after the first chemo infusion.  I too bought Tucks (I remembered my mom used those too) but they burned like CRAZY!  So I ended up using Desitin and powder, just like a baby! And it actually worked great and I felt MUCH better in two days. Oh, and before I made it to CVS to get the treatments (I hadn't checked out the shopping list on the "Chemo, Before, During and After" Thread - which by the way is RIGHT on!) I used a hand towel wrapped around one of those cooler gel ice bags and literally kept it "between my 'cheeks'"  LOL!  It wasn't too cold that way, but provided incredible relief!  Good luck!

    Hugs to all you beautiful women!

    · Share on FacebookShare on Twitter
  • arubajan05
    arubajan05 Member Posts: 140
    edited May 2010
    Oh, also, THANK you for all your tips on my Sahara mouth! Laughing
    · Share on FacebookShare on Twitter
  • caltex_catlady
    caltex_catlady Member Posts: 136
    edited May 2010

    Pickles, let us know if you decide to show up for treatment as a pirate. Love it!

     Karen

    · Share on FacebookShare on Twitter
  • JenC
    JenC Member Posts: 382
    edited May 2010

    Arubajan05



    Hope you are doing better. I to had a really dry throat which was hurting when I swallowed. They prescribed me the "magic mouthwash" for thrush. I have been taking it for 2 days and it seems to be helping. I am 6 days out from my first AC and still feel tired and drawn down at times but other times I feel pretty good. Fresh air and exercise seem to help to. Best of luck



    JenC

    · Share on FacebookShare on Twitter
  • JenC
    JenC Member Posts: 382
    edited May 2010

    Does anyone else feel like they are on an emotional rollercoaster. I had my first AC on Wednesday the 28th of April and since Sunday I have been so emotional, crying at the drop of a hat for absolutely no reason and I have no idea why. Not sure if this is normal or if I should maybe talk with my Onc about some anti depressants or something. I feel great for a while then boom, here comes the emotional wave..

    · Share on FacebookShare on Twitter
  • shygal
    shygal Member Posts: 89
    edited May 2010

    Hi evenyone, had an unexpected TX#2 yesterday that I thought I would share.  As most of you are doing, I have to write down any SE's and things that have happened since my last TX.  I thought that overall my SE's were pretty manageable and only had a couple of bad days.   On day four I had fainted like some others have also said happened to them.  Well the onco nurse wanted to know why I didn't phone after that happened.  I thought it wasn't a big deal and since I have low blood pressure and also fainted after my lumpectomy.  She suggested that I should have come to be hydrated and if it happened at night, I should have gone to the E/R.  I was very surprised.  She also said, that I should be phoning the clinic for any side effect that is new so that they can address it right away.

    Finally, the most unusual thing that happened was because of my fainiting and low level nausea for the whole first week, they reduced my chemo infusion by 10%.  The onco nurse said that this is very common and it's the least amount they can reduce the chemo.  That means that I'm going to have 30% less chemo overall by the end.  Not sure if I should be worried or not.  I didn't get a chance to talk to the Oncologist yesterday but will so I can understand how this affects the overall treatment plan.  Anyway, this is a good piece of info to know if case anyone is suffering a lot and perhaps then you too could have a reduction.

    The reduction made a difference in the way I felt yesterday and so far today....not nearly as foggy and don't have the hung over feeling...we'll see what the next few days brings.

    JenC sorry about your mood swings.  Although not happening to me, I have read that this is a common occurence.  I would definitely ask my Onc about it and see if they can give you something to 'even' you out.

    Good luck tomorrow Pickles and thanks for heads up on the Buffs.  I think I'll order some of those too.  I ordered a 2nd wig from the TLC on the ACS webpage but since it was so cheap ($45) I think it's going to be like Barbie-hair.  Has anyone been pleasantly surprised by the TLC wigs?  I bought the "Arden" which is basically a page boy/bob cut.

    · Share on FacebookShare on Twitter
  • caltex_catlady
    caltex_catlady Member Posts: 136
    edited May 2010

    JenC, I think it's pretty normal to have emotional ups and downs. Not only are we dealing with serious stuff, but the chemo is causing all kinds of changes. After my first AC treatment, I had crazy face breakouts like I haven't seen in years, and since I'm perimenopausal, the onco said the chemo would put me over the edge for the change. That's bound to cause some mood swings.I don't know if it's the same if you're younger.

    When I got my hair buzzed the other day, I was really crying, but I don't think it was all about the hair. Sometimes things just build up till they come out.

    It wouldn't hurt to ask your onco about something to help you get through this. Antidepressants can take a while to work, though, so maybe there's something else. In the meantime, come on by here and grab a buddy to cry with.

    Karen

    · Share on FacebookShare on Twitter
  • KimW
    KimW Member Posts: 18
    edited May 2010

    Hi all;

    Well, here we are with another new week. I am one week past my first TC. Friday was my worst day but tolerable. I took 2 naps that day and just layed around. My worst side effect that started on day 2 and hasn't stopped is extreme lower abdoman pain every time I eat ANYTHING. I called to onco nurse and she said that it can happen.

    I can't take anything for the pain because my liver enzymes are sky high. I am going in to have them re-checked today. If they are still high I will be sent for a abdo CT. My oncologist is sending me for a whole body bone scan because my oncotype DX score was 42, so he thinks we should have a baseline for future scans. I'm glad he's doing the test, but it just makes me a little more hypochondriac feeling. I told him that without a good blood test for us to watch for distant mets that we were all going to become hypocondriacs for the rest of our lives. But I don't see anyway around it. Oh Well...

    arubajan05: My So-Cal sister, I am so sorry that you are having such a rough time with your first round. I too got the rash, they said it was the T part of our treatment. I took benadryl to clear it up. I'm hoping you feel better for the rest of your time before round 2. Are you 3 weeks apart like me?

    Hang in there everyone.

    · Share on FacebookShare on Twitter
  • JenC
    JenC Member Posts: 382
    edited May 2010
    Thank you everyone for the suggestions.  I will definately be calling my Onc on the emotional thing this week.  Shygal  thanks for the information about the possibility of a lowered dose if needed.  I felt "foggy" for the first few days and blew it off as the neausea meds but who knows.  Something to talk to the Onc about for sure.  Glad you are doing better this go round.  I have my second AC on the 12th and hoping that it goes a little better and not such a woozy yucky feeling for days. 
    · Share on FacebookShare on Twitter
  • LauraM
    LauraM Member Posts: 251
    edited May 2010

    Hi All -

    I got my port put in yesterday, didn't realize it would make my arm and shoulder so sore, ugh.  I am getting nervous about starting Chemo on Thursday but your posts really help so thank you.

    Pickles -  Thanks for the Buff Wrap info, I went right on line and bought one for myself.

    I hope everyone is feeling better today!

    · Share on FacebookShare on Twitter
  • sumby
    sumby Member Posts: 37
    edited May 2010

    Hi Ladies, it's so nice to catch up on what's been happening to every one. Glad to know most SEs are manageable....hugs to those who are finding it a bit more difficult.

    Today is day 6 of my first cycle(EC) and have had some ups and downs....days 1 and 2 were pretty much a blur as i spent the days in bed. But apart from that, the SEs haven't been so bad except for this nagging chest pain i've had for about three days now. Sometimes breathing becomes so hard and i feel like there's a huge stone blocking my air way. Don't know if anyone else has experienced anything close to that. It gets really painful sometimes and makes sleeping difficult but i'm seeing my onc 2mrw so will discuss it with him. Also i noticed that my tongue is dark around the ages and I haven't been able to eat much since my cycle started....everything tastes flat...

    Take care ladies and all the best ((((((((((hugs)))))))))))))

    · Share on FacebookShare on Twitter
  • shygal
    shygal Member Posts: 89
    edited May 2010
    LauraM you'll be thankful for that port later.  Yesterday they again (for the 2nd time in 2 treatments) could not get a good vein and had the catheter in beside the vein - ouch.  Had to start again and still had a very hard time so that I was aware of the catheter the entire time. It was worst thing about my infusion yesterday.  Good luck on Thursday.  Will be a long first day, but not as bad as you're expecting.
    · Share on FacebookShare on Twitter
  • ellen_1959
    ellen_1959 Member Posts: 5
    edited May 2010

    4/30 Taxotere Cyto x 4 (3 weeks apart) Neuplasta /Steroids/  Hormone Therapy to follow

    · Share on FacebookShare on Twitter
  • ellen_1959
    ellen_1959 Member Posts: 5
    edited May 2010

    Finally posted. Last Friday was first round. So glad a friend of mine told me to get some ativan which they gave me through the IV. Opted to not get the port. The nurse was good and warmed up my hand for a long time before IV so it went very smooth. Weekend was pretty good but Monday and today (Tuesday) I am wiped out and Neulasta SE's bone pain is brutal!!! 

    I had such a bad reaction to pain meds that I don't want to go down that road again but the Advil/Tylenol isn't working too good.  Also I am very spacey and emotional the past few days.  I didn't think chemo brain hit so soon.

    · Share on FacebookShare on Twitter
  • susiesue
    susiesue Member Posts: 68
    edited May 2010

    I am now on day 6 of 2nd AC cycle.  So far the SE's have actually been easier, some have been a little different (sneezing on first day).....I feel better knowing that each time may be different and not necessaryily keep getting worse.  I love how caring the nurses are about SE, they always ask, sometimes I'm don't think to say something because I'm thing....this is chemo shouldn't I feel a little off.

    Tomorrow I get the results of my BRCA screening so I am nervous......not so much for myself, but in case my daughter could be affected.......

    · Share on FacebookShare on Twitter
  • marcy4
    marcy4 Member Posts: 162
    edited May 2010

    Caltex,  I love your idea about the pirate and the parrot. It is great to be able to  laugh about things.

    I had one white spot in the back of my throat and a bit of a sore throat. The magic mouthwash took care of that after a couple of days.

    I am 2 weeks out and my head has a few very tender spots. Cut my hair shorter but it is falling out more each day.  I figure in another week it will be pretty sparse. Everyone is complementing me on my new haircut.  I told them to enjoy it for the next week because after that it would be gone.

    Laura M  --- My port bothered me for the first week but since then I do not even know it is there. The bump is visible, but there is no pain whatsoever. Get past the next few days and it will be fine.

    Jen C --  I have taken antidepressants for the past couple of years.  I take one at night and I sleep like a baby.  It really helps to reduce my anxiety.  With a good night's sleep the next day always looks brighter.

     Good luck to everyone and hopefully your SEs are not too bad.  I am enjoying week 3 and feeling normal.  I know that after treatment 2 next Monday I will have a stay at home week, but it will be one step closer to the end.

    · Share on FacebookShare on Twitter
  • caltex_catlady
    caltex_catlady Member Posts: 136
    edited May 2010

    I got some "magic mouthwash" today. I called in yesterday about a white spot on one tonsil and a slight sore throat. We'll see if it takes care of that and, I hope, the dry mouth and tender tongue.

    I had to go pick up the mouthwash, so I went out wearing one of my head coverings. (The "Raspberry Maze" Gabriela style from Chao Pelo: http://www.chaopelo.com/) The lady at the counter complimented it, so maybe I'll get more comfortable being out in pubilc like this. I wish the rest of the hair would just go already! I think being completely bald will look better than this mangy look I have now, and the scalp is bound to feel better. At home I just go commando because it feels better not to have the pressure.

    Hugs to everybody!

    Karen

    · Share on FacebookShare on Twitter
  • DancerMel28
    DancerMel28 Member Posts: 122
    edited May 2010

    hi again everyone,

    marcy - i know what you mean about the haircut, i cut mine last week and everyone keeps saying how nice it is. I keep saying won't be there for long now.  I'm on day 6 from my first TC and already strands are falling out so i figure it won't be long now :-)

    I've decided that I can't sit around any longer - I don't actually feel like doing anything but I feel worse sitting around so am trying to be a bit more active and surprisingly it is helping to make me feel better. I woke up with a massive headache this morning but it's virtually gone now after doing some washing and other bits and pieces around the house.  The DH won't recognise the place when he gets home. 

    The other thing that I've discovered works - putting on your favourite music.  It really does help lift the spirits Smile

    Only other thing - i've seen mention of some people experiencing a rash of pimples as a result of chemo. Has anyone discovered anything that helps?  I've currently got a bad rash over my face, neck and upper back. Not sure if there's anything that can be done but it's getting annoying.  None of the literature I recieved about side effects says anything to help - only mention is that you may get a rash and that it will clear up after treatment. So weird!

    Hope everyone else's going ok, til next time,

    Mel

    · Share on FacebookShare on Twitter
  • Pickles
    Pickles Member Posts: 80
    edited May 2010

    Shygal!

    Thanks for the good wishes for Tx2 tomorrow!!  My sis-in -law gave me a disco ball for my IV pole tomorrow...but it's Huge!!!  I have to settle for putting it in my bedroom to cheer me up on the Zombie days! 

    AND TO ALL OF YOU!!!

      Call your Onc any time you have side effects that make you feel bad.  Just because you"ve heard someone has had it and it's somewhat normal doesn't mean you have to suffer!!!!!!  The onc nurses are there for us and want us to feel as good as possible through this process!! Sumby  I'm worried about you!!  Let us know how you are doing!  My Tongue swelled but not my throat.  My onc has someone on call 24 hours, you may want to call and see if there is something you can take OTC to bring down the swelling.

    Dancer

    I got hit by the rash from tip of my head to my stomach...yuck!  They had me take 1-2 benedryl.  Just the OTC ones, nothing special.  It seemed to help but they didn't really go away completely for another week, they didn't hurt or itch after I started the benedryl.

    JenC

    from day 3-13 I would cry for absolutely no reason what so ever...I'm basically a happy person who will make fun if I can't find it so crying at the drop of a hat for me was definitely a SE for me.  And don't get me wrong...I love a good cry and have had quite a few real painful, can't really breath ones during this journey at some real ackward times, but this was different, just tears starting to stream down my face when I wasn't thinking of anything sad or feeling down, just feeling really tired and boom!  Tears!  Hubby wouldask if I was okay, I'd tell him I couldn't figure out why I was crying and he'd hug me or rub my back and not say another word.  I Love that man!

    Good luck with the SE's everyone!!

    I'm off for Tx#2 in the AM so it's time for an Ativan...so I can sleep with all the steroids in me!

    · Share on FacebookShare on Twitter
  • marcy4
    marcy4 Member Posts: 162
    edited May 2010

    Good luck, Pickles.  I hope you get a good nights sleep.

    · Share on FacebookShare on Twitter
  • arubajan05
    arubajan05 Member Posts: 140
    edited May 2010

    Hey DancerMel, I had the rash too but I didn't feel benedryl helped much so quit taking it. I am on Day 11 after Round 1 TC and it's subsiding considerably YAY!  I also agree music has helped me so much!  I made 2 different playlists on my ipod.  One called "Happy Hour" (which is what I am calling the time frame where I receive my chemo "cocktail") is a mix of upbeat soft rock/pop music that just generally makes me feel good. And then I have another playlist called "Chillax" that is relaxing "sleepy" tunes. Sometimes I put my headphones on that during the day to help me rest so my mind doesn't run in circles.

    Pickles - we'll be thinking of you tomorrow! 

    Hugs to all!

    · Share on FacebookShare on Twitter
  • JenC
    JenC Member Posts: 382
    edited May 2010

    Good luck today Pickles.  I hope all goes smoothly.  Thanks for letting me know I am not the only one on this emotional thing.  It seems to be getting a little better (only broke down a few times yesterday) but we shall see. 

    · Share on FacebookShare on Twitter
  • saralmom
    saralmom Member Posts: 329
    edited May 2010

    Hi everyone.

    Finally catching up - weird and annoying side effect fo all of this - nausea by association.  Anyone else?  I get nauseous even thinking about the infusion room, thinking about lemon drops which I ate during the first infusion, and get this, I get a little queasy when I log in here and read about infusions, etc.  I hate it b/c I also find so much comfort in everyone's journeys and support.  Ugh.  Weird.

    I had my PA appt. yesterday and it's true what everyone is saying - they really want us to tell them ALL of our SE - just to know and monitor but also to alleviate them whenever they can.  I tend more toward the theory someone else shared - this is chemo and I thought I was supposed to feel kind of crappy so I just deal with it.  But the PA heard about my muscle pain last week and was basically trying to convince me to get vicodin or something more powerful than tylenol to deal with it.  Also, regarding crying - the first time I met with her between treatments I burst into tears when she came in the room and said I didn't know why I was crying so much, and she said of course you are, we are totally MESSING with your hormones right now...  okay, that makes sense I guess.  Good news is that my numbers yesterday were mostly better than last time, except my hemoglobin continues to dive, and I am hoping it rebounds next week, or I'll be in for it.

    Wore my wig in public this week.  I hate it - it's uncomfortable and hot, but I have to use it for work and at my kids ball games, etc.  Did get one of those comments - "Hey, your hair looks great" from one client.  Funny.  My buzz cut hair continues to come out in my hands and the sides of my head are pretty bare now.  I'm kind of looking forward to it coming out b/c it really does feel sore and it makes the wig hurt I think, and it's hard to lay down to sleep...  

    arubajan - love the names of your playlists!

    pickles - good luck today!

    susiesue - good luck with your BRCA results - I too was so worried about my daughter...

    shygal - hope you;re doing well after yesterday's tx...

    Everyone else - have a good day and hope you are all feeling okay... 

    · Share on FacebookShare on Twitter

Categories