October 2011 Chemo group

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  • cfdr
    cfdr Member Posts: 549
    edited October 2011
    I did switch to tea for a couple of days after treatment...wasn't the taste so much as I had a feeling it might upset my stomach. Also have had some weird aversions, e.g. my husband made an omelette with mushrooms and I picked all the mushrooms out...they just tasted gross to me for some reason. I've never been pregnant, but he said I remind him of his first wife when she was pregnant...weird cravings (butterscotch pudding???) and aversions.

    I mostly just ate bland food the first week...english muffins were my salvation.

    I'm bummed to hear some of you say that the side fx are not the same from one cycle to the next. I have my second tx on Friday, and I was hoping that this round would be a bit more predictable, both in terms of side fx and timing of such. Have any of you that are on your second cycle found it to be similar/different from the first?
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  • perts1
    perts1 Member Posts: 62
    edited October 2011

    Best of luck, Dechi!  Too bad we didn't get with the 6 months ago girls before this so we could send the wigs back & forth.  Doesn't sound like many people like them much!  One of the girls in my chemo group at the clini wears the halo wigs and she loves them.  They look great! 

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  • Carla9112
    Carla9112 Member Posts: 162
    edited October 2011

    Hi everyone - I would have to agree with Juls - this treatment has been different.  I, too, was operating under the impression that the SE's from this treatment would be the same as last time.  It's different though - I just feel different.  My head doesn't feel quite as clear-headed and I'm really tired.  Almost got sick this morning but it was because I didn't take my Ativan.  As long as I take it though I have a little bit of an appetite.  That's a big difference from first time when I was so sick.

    Good news is that the Claritin is doing the trick - no bone pain this time either - yet.  I guess we just have to expect that the first week after treatment is just going to be a hard week and keep moving forward to that last treatment date. 

    Hang in there girls.  We'll get through this.  Talk to you later!

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  • Lady-di
    Lady-di Member Posts: 150
    edited October 2011

    Thanks for the updates as to what your going through after your next treatments.

    Next week is my second tx and you guys are answering some of the questions I have thought of.

    I also like the updates of what you have found to eat.



    Today is day 7 for me and I'm so tired, it's surprising me. I went out for a bit and really thought I'd have more energy then I do. Seemed as though I had more yesturday but I didn't do as much yesturday. Think I need more proteins maybe. Who knows?



    Tappy- good luck tomorrow at work and I think everyone is going to be so happy your back. Keep us posted. :)

    Diana

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  • auntienance
    auntienance Member Posts: 4,216
    edited October 2011

    Day 2 after second TX and I gotta say, so far this one has been a little easier. Hope I'm not jinxing myself here because tomorrow could be entirely different. Still some fatigue and metal mouth, but so far no gi issues and not quite as spacey or shaky as last time. One day at a time ladies! dechi - if I were to repeat my experience with a halo, I would get a long one and cut it to whatever length I wantEd. I wanted a short straight one, but it never looked straight or decent. Others have had better luck I think.

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  • WIMusicMaker
    WIMusicMaker Member Posts: 78
    edited October 2011

    *****Warning***rant here.

    I went in for my 2nd treatment today. I was there SIX hours!! An incompetent person stabbed at me several times to put in an IV, which needed to be moved once I got to chemo because it was too low on my arm. At my appointment with my doc he told me he really thinks my fever that put me in the hospital was just a fluke so they were not going to do anything different.The final straw was I had another reaction to taxotere so my treatment was stopped and I have to change chemo to A/C. I have a heart scan scheduled for Friday and next chemo on Tuesday. I will probably have a port installed Tuesday because the A is harder on the veins. This is so FRUSTATING! 

    Thank you for reading about my frustations. I will get my head around this and feel better and as several of you have said pull my big girl panties up. I am just not ready to do this tonight.

    I hope none of you have to go through this. 

    I will get my head around this but it was a blow for me. I knew what to expect from the T/C now I am concerned how I will react to the A/C. 

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  • stjude10
    stjude10 Member Posts: 390
    edited October 2011

    welcome dechi, so sorry you have to go thru this again. sending gentle hugs your way.

    went for my 1st tx follow up today. numbers pretty low. expected that. glucose too high, and mo says diabetes is probably the cause for my blurry vision moreso than anything else. any other gals here dealing w/diabetes as well. i need to have fasting tests done before next tx on tues.

    ate a whole meal for lunch today... more calories than i should've, but too bad!

    I have a halo, but I haven't worn it yet, and it needs to be trimmed. Will let you know how I like it.

    WI, rant away for tomorrow may be my turn!

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  • sue_from_wi
    sue_from_wi Member Posts: 40
    edited October 2011

    WIMusicMaker - feeling for you and your frustration. I am so sorry you're having to go through this.

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  • WIMusicMaker
    WIMusicMaker Member Posts: 78
    edited October 2011

    Sorry about the wrong spellings on FRUSTRATION! I guess I was too frustrated to spell it correctly!

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  • auntienance
    auntienance Member Posts: 4,216
    edited October 2011

    Lori, I have diabetes and have had issues with blood sugar numbers because of the steroids. diabetes will definitely cause blurry vision especially if your glucose numbers are high. Some of us have had success with having the steroid dose scaled back. Since I was already using insulin, my doc added short acting for me to use before meals to control and it has worked great. If you are are newly diagnosed you probably won't go that route. Stress doesn't help by the way, so it's a double whammy. Good luck, as if this crap isn't enough to deal with by itself!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2011

    Wi, so sorry to hear about your experience. I had a few bumps in the road at the beginning and it just seems to make something that is all ready so hard on so many levels that much harder.  You rant all you want to!  I will tell you that I do like having a port-- ask them for some numbing cream to use before your first chemo appt.   I didn't know about that magical stuff until the nurse asked me when I was there if I had used it!  Makes a world of difference (and really, who needs to hurt more then they need to)

    Sending good thoughts your way

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  • auntienance
    auntienance Member Posts: 4,216
    edited October 2011

     I'll show  you mine if you show me yours . . . 

    me

    Channeling Mr. Clean 

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  • barbyjean
    barbyjean Member Posts: 108
    edited October 2011

    WI, sorry about the problems with your chemo.  I want to tell you I have a port and loved it thru my first tx. Didn't feel a thing, even with no numbing cream. Second one Wednesday, I hope it still works great. 

    Have a good week ladies, hang in!!!      Barb 

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  • NancyJill
    NancyJill Member Posts: 218
    edited October 2011

    Chemo round #2 today. My allergic reaction to Taxotere made my oncologist take me off of TC altogether. I can't have AC because I'm on Herceptin. New drug is Navelbine. I feel much better than with round #1 on TC because I didn't have to have Benedryl. Wired on steroids. Just took something to make me drowsy. I will let you know how this drug affects me. Anyone else hear of it?

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  • cfdr
    cfdr Member Posts: 549
    edited October 2011

    WiMusicMaker, NancyJill, so sorry to hear about your problems with the drugs. Getting used to one treatment regime is difficult enough without having to switch to another. I hope you both have better reactions this time around.

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  • auntienance
    auntienance Member Posts: 4,216
    edited October 2011

    Nancyjill, how frustrating but hope this new regimen works better for you. I had TX #2 Monday and freaked out slightly when the nurse said, now you can still have an allergic reaction to this even though you had it before (taxotere). yike! Let's get this over with!



    Good luck today Barb!

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  • NancyJill
    NancyJill Member Posts: 218
    edited October 2011

    WIMusicMaker--I'm glad I have the port! I'm with you on the change in medication. I'm glad there will be no more Taxotere. I will admit that I was surprised how long the day was when I had the port placed-- was full anesthesia, then soreness. I hope yours goes smoothly. Having the port means no more incompetent arm sticks! I hope A is no big dea. So far, Navelbine is okay. My third week after Taxotere/Cytoxin/Herceptin was a good one, though, so take heart, anyone who is just on the first week!

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  • NancyJill
    NancyJill Member Posts: 218
    edited October 2011
    Dechi--good luck. Auntienance--you'll be fine! cfdr--thanks! so far so good. dia123 and carla9112--listen to your body and rest when you need to. Chemo head does feel weird, but the cancer cells are dying all around, right?
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  • auntienance
    auntienance Member Posts: 4,216
    edited October 2011

    Shout out to sue from WI - yogi ginger tea with lemon is great for the queasies! Thanks for the info!

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  • wildrumara
    wildrumara Member Posts: 450
    edited October 2011

    Sorry for some of the bumps in the road ladies on 2nd treatment!!!   @.WiMusicmaker....they will get it figured out....I'm sure they will.  That can't be fun though....sorry!!  

    Had second treatment of  (TC x 6) on Friday....Saturday and Sunday fine, Monday AWFUL!   Yesterday better, but very fatigued today, but I'm fighting through it till I can have lunch here in a few minutes with my husband.  Going to get some chicken tortilla soup at a local establishment......maybe that will taste good???   Again, nothing much tastes good, except bad, bad foods... (LOL)......Target popcorn, sour jelly beans, friggin Halloween candy laying around...... I hate the fact that I'm eating like shit right after chemo, but I have to get something in me.....I'm not overdoing it though.....no worries....getting a few bites of protein in me!.   The water from my fridge tastes like there is rust in it!!!   I think I mentioned this before to you all, but I am now on day 11 of my period!!!   This has to stop.  I thought I would go into "chemopause".  My oncologist is blowing me off (a bit).   Her words were "you have ovaries of steel".  Well, I don't want ovaries of steel......I want my ovaries to shut down!!!!   I think I will give it a few days and then call MO back or maybe GYN and she what she has to say...... It's not a heavy flow, but its there....every day, all day!   Hope the day gets better for you all!!  It's a dreary day here in PA.....looks like the temps are about to drop!!  

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  • julsjewels11
    julsjewels11 Member Posts: 66
    edited October 2011

    Auntienance- you look great! If it's whine day I have some comments too. Food and water does taste odd- all of it pretty much except cheese and plain crackers. My ribs hurt from coughing from this cold I can't shake and I feel "down". I am guilty and sad that I am not feeling able to help out with our daughters and their children like I used to...not anything on their part - just me. Weather is cool and wet so we are housebound a lot and that doesn't help. Okay that's over...I feel better. Hope everyone with issues has them under control or at least manageable. Anyone have any suggestions for cracks at the side of your mouth? Keep strong and if Hallowe'en candy taste good- I say eat it!   Juls

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  • Normandy18
    Normandy18 Member Posts: 30
    edited October 2011

    I really appreciate everyone's updates on their second TX. I have my second treatment on Halloween (trick or treat!).

     Auntienance--I love the picture. I have cut my hair short and updated my picture, but I still have my hair--though my scalp is getting pretty tender.

    I picked my wig up today--actually found one that I liked.

    My last 3 cycles will be Taxotere, so appreciate hearing about this drug as well.

    Take care!

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  • cfdr
    cfdr Member Posts: 549
    edited October 2011

    I also got the cracks at the sides of the mouth. I did the saline rinse 4x/day, and made sure I pulled my lips inside (like making a face like I'm toothless) so the the lips and the edges of the lips got it, too. I also got some blistex "restore" lip balm in a tub, which I put on with a q-tip (one of the tips in the LGFG workshop was to make sure you use disposable applicators for any lip balm or lipstick). Those both seemed to help. This time around, I'm going to start with the saline the afternoon before the treatment, and hopefully tone down the mouth yucks from the beginning....last time I didn't start doing it until the day after treatment, and symptoms were already appearing by then.

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  • Lady-di
    Lady-di Member Posts: 150
    edited October 2011

    Juls- I would suggest that you rinse with a baking soda, salt and water mixture. You can also purchase a non alcohol mouthwash such as biotene. This hasn't happened to me but I'm sure someone else will give you good advice. Sorry that you are still dealing with that cold. That can't be easy!



    Wildrumara- Period....... SUCKS, I finished my period about 10 days ago and had my first tx 2 days later. Which was last wed. I think it is starting again today. Is this possible? Thought it was suppose to stop. Ugggg..



    WI and nancyjill- hope your new treatments plans work out for the better with little SE's.

    Diana

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  • dechi
    dechi Member Posts: 173
    edited October 2011

    Just got back from my first txt with AC.  My port worked great, which I'm happy about!  No SE so far so I went back to work for a couple of hours!  Thanks for all the support ladies!

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  • Lucie_inthesky
    Lucie_inthesky Member Posts: 9
    edited October 2011

    Hi all !



    I am new here. I had my first chemo last Friday (taxodère and cyclosphosphamide) and some pre-med steroïd and benadryl. I have been shooting myself with Neupogen everyday since and tonight is my last shoot :))) yeah !



    So far ...

    - Did quite a 'badtrip' of benadryl on steroïde ...Arms moving all around, waiting to leave my body and come back later...etc... Could hear the nurses saying we don't start her yet (on the chemo) ..no lets wait...anyway if you have this just remember it will last 10 minutes...long 10 minutes but still only 10 minutes





    - 1st day after chemo ... Steroïd Food Craving...I could have ate all day...so I ate good stuff ... Lots of energy too did 1 hour of yoga and 1 hour walk



    - 2nd day ... No steroïd left in my body for sure.... Slept all day



    - 3rd day ... One hour after the neupogen....could not breathe...phoned the on-call oncologist...it is a panick attack...never had a panick attack, my digestive system is working perfectly fine but I have panick attacks...I need to breathe...



    - 4th day ... I have teenager period !!! I taught the deal was to have a period free perk ????



    - 5th day ...living at my dad for the first week after chemo ...got into an argument with my stepmom on when and how I should get my hair cut...her position : stop scratching your head ...we should cut them asap...my hairstylist is soooo nice...my position : no way I will go to an hairstylist to pay 70$ to have my hair clipped ...not sure I like the idea of having a room full of beautifull people who just got their hair done...I also start crying cause I hate been sick, the lost of autonomy, the pain, the lost of energy AND I am homesick...



    Question to all : Is any of you living alone and going thru the chemo week at home ? Is it feasible to stay home by myself during the first week if I prepare a lot of frozen food or am I dreaming ?



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  • mnjclark
    mnjclark Member Posts: 17
    edited October 2011

    Hi everyone.  Just found this board so thought I'd post and say Hi.

     I started Taxotere/Cytoxan on Sept 29th and just had my 2nd round on Oct 20th.  Third of 6 will be Nov 10th.  So far I'm doing very well.  My side effects have been:  sleep issues day before treatment from the steriod and then about 20 minutes of slow visual tracking during the steroid bag - it goes away right after it's done.  Then tiredness from the antinausea med for 3 days, followed by sore mouth (raw feeling).  I do the salt water washes frequently and use biotene.  It helps a lot.  For this round I'm still at this spot.  Previous round it was followed by 3-4 days of severe nose pain (felt like the inside of my nose was covered in zits).  Then 48 hours of bone pain.  Claritin helped only for a few hours at a time.  Advil relieved the pain for 12 hours at a times.  I was most grateful.  Then after that my scalp started hurting and my hair pulled out in clumps.  I'd had it cut short, about 2" long, in preperation.  So, when it started falling out I just washed out as much as I could.  After 3-4 days all I was left with was my blonde highlights.  Totally interesting that all the darker hair fell out.  I'm wondering if the rest will go this round...??  My head still hurts and itches and has bumps all over.  Onc says its just sensitive and it'll be "my thing to have".  Yay!!

     I have a port and I love it - no more arm pokes.  The port insertion day was a nightmare!!  Five needle pokes trying to get blood and or an IV started and 7 hours at the hospital for a 45 minute surgery, followed by nausea and days of pain.  Uggh.  All is well now, except it's a bit difficult to sleep on.

    Things I've found odd - the taste of the salene...  that's the only thing I can taste/smell during treatment.  It's a flowery funny taste.

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  • julsjewels11
    julsjewels11 Member Posts: 66
    edited October 2011

    cfdr,dia123 thanks for the mouth suggestions. I shall try that. I do have Biotene, both mouthwash and toothpaste but will add the salt water and baking soda- so how much of each? Does it matter?

    Qtip applicators -yup- got that one covered. My sore mouth happens about a week after tx and then it seems to recover but feels like new tissue.

    Julie and Lucy Welcome- this is a great group with lots of help and support.

    Take care everyone and have a good nights sleep and better day tomorrow.....Juls

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  • cfdr
    cfdr Member Posts: 549
    edited October 2011
    The saline solutions is 1/8 tsp salt to 1/2 cup of water, and just a pinch of baking soda.

    I was told that the mouth sores would start about day 7, but they started much sooner than that. Started feeling yucky mouth the next day, and by Monday night I already had the beginnings of sores. One rinse with Magic Mouthwash did the trick and it backed down to just being yucky again.
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  • mnjclark
    mnjclark Member Posts: 17
    edited October 2011

    Lucy, - you asked if it's feasable to stay home alone and/or live by yourself for the first week of chemo...  Well, you've almost got that first week under your belt now and you're the best person to know the answer.  My Onc told me that the first round it is a good indicator of how the following rounds will go - so far it's holding true.  I personally could live alone, I wouldn't have any issues other than being bored to tears and letting all the emotional crap creep in.  Physically, it wouldn't be a problem for me.  But, like I said - you're the best one to judge whether you can do it or not.

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