January 2013 chemo group

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  • SeattleMama
    SeattleMama Member Posts: 147
    edited January 2013

    to anyone that wants to know, I was just feeling really queasy and I am trying put off taking the anti-nausea meds.  I just ate a bunch of organic parsley.  Tummy is all better!
    I did this last time with the Taxotere (though I only had one cycle of that, and didn't get nauseated on the other chemos).

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  • gd2shuz
    gd2shuz Member Posts: 45
    edited January 2013

    SeattleMama, I was asking everybody in general, and I see that the answers do vary. I will just have to wait and see.

    Kiwikid, doesn't it just amaze you at what a GIFT it is to these lyricists/poets that they can put words together like that?? 

    Everyone else, because I can't remember who said what...I am 66 years old and wonder if I am the oldest here. Like several of you have observed, it's bad to go through this with young children. I had a scare when my now 30 year old was only 2, and my exhusband was definitely not someone I could even think of leaving her with. No more on that subject.   Thank God she is an adult now.  

    I wish I liked yogurt.  I bought some today and will try to get myself to change my diet to make it more chemo-friendly.  I also bought blueberries, just because.

    I don't like gatorade, but will have to learn to like it. Would you girls with experience say that the citrus flavor is better than the fruit punchy sweet types for tolerating in chemo? Probably no real answer to that one. 

    I want to say thank you all to everyone here.  This forum has been a mind-saver, and who knows, may have been a life saver in many cases that we will never know of.  I really appreciate this board and everyone who posts, lurks, or is otherwise involved.  God bless you all.

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  • SeattleMama
    SeattleMama Member Posts: 147
    edited January 2013

    gd2 - Im 42 mom of one sweet 6 yr old daughter.

    If you don't like yogurt, you can get the acillydiphus supplements.

    and I don't like gatorade or pedialyte, so I got NUUN dissolving tablets instead.  Then, after you are hydrated, you can drink what water you want, decaf tea or coffee, juice, etc

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  • Colleenkelly
    Colleenkelly Member Posts: 99
    edited January 2013

    Paula- Not to mention the fact that alot of cancers are not caught by a mammogram. I have invasive lobular, am almost 44. They figure my cancer has been there well over five years. I have been getting mammograms since I was 39 and have had a few ultrasounds and it never got caught until it caused architectual distortion in my breast. I think maybe they need to start doing Mri's routinely. Good luck getting the insurance companies to pay for it though.

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  • Liz_58
    Liz_58 Member Posts: 8
    edited January 2013

    5 days post Tx1 and feeling alright. Really kept the liquids up as suggested by you ladies. Thanks for that! I also had the sinus thing with the Cytoxan but they said they would slow it down from 20 to 30 minutes next Tx to resolve the sinus irritation. It only lasted a few minutes so it wasn't really that bad. Lots of small meals seems to keep the nausea away. Sleeping better now that the steroids are done. Today just feeling like I want to lay around and rest a bit. Tomorrow, I'll be taking my Neupogen shot on my own and so far no SEs from it but may be too early to say for sure. It's so good to know from reading here that everything that's happening to me is pretty normal even though there are variations with all of us. Can anyone say if the SEs from Tx2 and on get worse or do they stay much the same as Tx1?



    Hope all are having a good weekend!

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  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    skigirl, this is for you. :)

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  • Sandra60
    Sandra60 Member Posts: 201
    edited January 2013

    Colleen - I am right there with u on the need for MRI's - especially for dense breast tissue . I have level D-3 ( scale is 1-4 ) so fairly dense and I had to beg for an MRI of my left breast to make sure it was clear . I have a extended familyn connection to a female dr at rhe mayo clinic and her email about rhe need for an mri for memis what changed my primary care dr's and my surgeons mind . Before I had that info I was just guessing that a double masectomy was the way to go but when I finally for MRI results that there was nothing other then my one tumor I decided on them lumpectomy . Young women especially have more dense breasts ( opposite it fatty ) and I think age 30 would be a good place to start with a baseline MRI . There are other molecular breast imaging techniques that are being developed and will also catch more . I think the whole medical community needs to push for younger sceenings earlier detection and better imaging like MRI's ! The main excuse they make is MRI will pick p too many false positives - but wouldn't u rather have that result than not know at all ?

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  • SeattleMama
    SeattleMama Member Posts: 147
    edited January 2013

    ROFLMAO BRYONA :D  so true, so FREAKIN' true

    Liz, I found that I did accumulate, but really didn't see that till tx #4 - and that was Cytoxan, Herceptin, Carboplatin

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited January 2013

    Hi Colleen,

    I sent you a PM about where to shop locally for your wig!

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  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    Ah, Nancy, that was just the thing! I just read your post from last night/this morning, and it was like a big, warm hug right out of the computer. What more could a girl ask for?

    kiwikid, I'm an English teacher, too! What are the odds? And how am I ever going to teach Heart of Darkness with chemo brain? As for your MX question, I think whatever will let you sleep best at night is what's right for you. Every road on this journey can seem scary to me; all we can do is find the road where the fear seems to have the biggest reward at the end of it.

    louise, I know that the anti-nausea meds can just be as needed, so you might try not taking them and see how you feel. I've hardly needed them--the stuff in the IV mostly did the trick.

    honeybair, ciao bella! Welcome to our family. When do you begin chemo, or have you already begun? (Don't mind me. I'm the self-designated record-keeper. It's a personal problem.)

    Ci vediamo, belle!

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  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    Hi all,

    Wanted to add my 2 cents. I have been using the baking soda/salt and H20 at least 3 x day since the day before chemo, mouth is like Lauren's feels filmy and like I have been eating tons of salt or sucking on a lemon. My lips feel really chapped and I have been using blistex and Burt's bees which is what I always use for normal chapped lips but I swear the lips are getting worse. My dentist gave me a sample of Biotene yesterday, the mouth rinse, mouth moisturing gel, toothpaste, and I had bought the gum myself. I LOVE all of them so using them in addition to the bs/salt/h2o rinse. Now if I can just figure out what to do for my lips. I don't like chapstick and I just tried some vaseline because I drink constantly and figured maybe that would keep them from getting wet. We shall see. Highly recommend the biotene gum even though at Walgreens it was $2.79 for 16 pieces.

    Take care, Sheryl

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited January 2013

    Bryona- I was just talking to my GF and we were talking about that very picture.!! It is so true.. we are definitly the stronger sex.

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  • hope49
    hope49 Member Posts: 370
    edited January 2013

    Hi Sheryl, Lauren and Amrdbit...checked with my Chinese dr today about the mouth roughness...she said very common and it's just dry so keep up the rinsing and fluid intake. Nothing to do about the salty taste, just keep pushing fluids to move the bad stuff out.

    Sheryl, I like the Biotene,too, tastes good and keeps everything moist. I have moved to plain Vaseline for my lips as well...I can't stand them to be dry so I pop some on every time I brush or rinse and it seems to stay put, especially during the night.



    Hi to everyone else, too -- hope you have a good weekend!

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  • SeattleMama
    SeattleMama Member Posts: 147
    edited January 2013

    ok, about the mouth issues......back to the NUUN again.
    with the taxotere, my mouth was all kinds of jacked up. HORRIBLE, couldn't eat, barely talk, the corners of my mouth almost grew connective tissue, I swear, it was really really bad.  and they gave me some Magic Mouthwash which didn't do crap, but make everything numb.
    The NUUN keeps your lips plump and moist, and I'm saying they are hydrated from the inside, so I don't even have to put a balm on them.  You really shouldn't use vaseline either (petroleum jelly - not good)
    And someone brought up a good point about any balm, it should be a tube. Not a stick or dipping jar. You have to be very careful with germs and you recontaminate every time you dip or spread from the stick.  So a tube of balm is best.

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  • Zorina
    Zorina Member Posts: 103
    edited January 2013

    AC #2 - Day 1  I didn't sleep as well as last time, but they didn't have to dope me up with Benadryl this time because I did not have an allergic reaction to Cytox.  FYI on the cold sweats:  The nurse said it is cause by the 'roids.  SEs are about what they were last time other than not getting as much sleep. I expect to feel lousy by Monday, though.

    My hair was coming out rapidly, and it was all over the house today.  So, we shaved today...check out my new profile picture!  I will replace it soon with a view of my new scarf.  

    Amrdbit Good to know you are feeling well. It is also good to know that they have really done a lot to improve treatments in the past 18 years.  I am very grateful for those who braved it for me.

    Andrea84  Wish I could think of something thoughtful and wonderful to say,  but I hope you'll accept a  virtual hug.  The hair is temporary...I call it a mile marker on the turnpike out of Cancer.   One of the gals taking chemo with me yesterday lost her hair during AC, but it is growing back during the Taxol.  She only has two more treatments...cannot wait to celebrate with her. 

    gd2shuz - Glad you work for a large organization and that you have STD.  I had folks offer me some of their leave, but I turned them down.  I felt badly and knew I needed for more than they could give.  That's what STD is for.

    Funny story of the day:  During Chemo yesterday, a couple of ladies broke out in a chorus of Star Spangled Banner.  Apparently, the port is a bit difficult for one gal, so she and her friend sing a chorus while the nurse inserts the needle.  Supposedly, it works like a charm.  They say that it's the high notes that do the trick.   Everyone around me muttered that they felt they should stand up but didn't have the energy to do so.

    Caio  (hope I spelled that right...chemobrain)

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  • tmcd1988
    tmcd1988 Member Posts: 5
    edited January 2013

    I began my Chemo treatment on Monday January 14th, the treatment itself was not bad, took about 4 hours! Monday I had lots of energy and did not sleep well that night. Tuesday again I had lots of energy but by about 6:00 pm was in bed exhausted!! Wednesday was the same and so was Thursday only maybe not real energetic. Friday was rough, I was bloated and didn't feel well all day, went to bed at about 5:30 pm and stayed there until morning!! Felt much better today, not bloated and good!!



    Stay positive my fellow cancer friends! We can do this!!

    Many Blessings!

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  • honeybair
    honeybair Member Posts: 746
    edited January 2013

    Skigirl, you are the age of my older daughter and she is expecting her first baby in March.  Yes, your son needs you and will continue to do so for as long as there is life in each of you.  I am pulling for you.  I enjoy reading your posts.  you are an inspiration to me.

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  • honeybair
    honeybair Member Posts: 746
    edited January 2013

    Hi Bryona, began chemo last Wednesday.  Had bad days yesterday and today, though less pain overall.  i am trying yo avoid Tylenol because it is so hard on the liver and have not taken anything for discomfort.  I will tough it out as much as possible and get in a long walk tomorrow.  That should help with msucle aches or whatever they are.  How easy it is to take being well and feeling good for granted until we come down with cancer. 

    Hugs and blessings.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Byona~I love the pic. That suits my husband to a tee. I had a breast amputation and chemo, and have never gone to bed with either one, but let him get a little head cold and he as to go to bed for 3 days. Lol



    Blessings

    Paula

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  • Bryona
    Bryona Member Posts: 214
    edited January 2013

    honeybair, it sounds like we're chemo buddies. I started Wednesday, too, as did Nancy and Nikki. I know what you mean about taking feeling good for granted--I hardly know what to do with myself now. It's so odd to not feel normal.

    tcmd1988, ciao bella. I'm glad to hear you're feeling better now... not least because I'm feeling bloated myself and hoping for some relief. I'll keep my fingers crossed that I'm on your schedule; I'm ready to feel unbloated in the morning!

    So, here's my big frustration so far: I can't stay focused on reading. Seriously? Here I am with time off in the middle of the school year, and I can't even take advantage of it! It's almost like I'm sick or something. What's up with that? I'm telling you, this whole cancer thing is not the party I was led to expect. I wonder if I can return it for something more useful... like maybe tupperware, or a nice box of stationary?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Byrona~Are you still on steroids? I don't feel bad till Day 6, when the steroids are waving bye bye, as they stick their tongues out at me. Then I get the chemo fog, constant peeing and chills for about 2 days. I'm fine by Day 9. Tastebuds go for about 3 days. For me chemo only lasts about 36 hours.



    I pray you feel better.



    Blessings

    Paula

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  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    Thanks Hope, I figured we just had to go with whatever came our way. Don't have mouth sores per se but have nose sores, ouch!

    Take care, Sheryl

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  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    SeattleMama,

    Why not vaseline? It is not my choice of lip stuff but I thought it might provide a barrier to all the liquids I am drinking which I think are chapping my lips. Just want to be sure I am not doing something to make things worse. I am gonna check out this NUUN I haven't heard of that.

    Thanks for the feedback, Sheryl

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  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    tmcd1988,

    Speaking of the bloat, I was getting frustrated even though I knew the taxotere caused fluid retention. I have been eating so much better (blood sugars had been near 400 for a long time, 106 this am) and had actually lost 10 lbs before chemo in just 3 weeks. MO said it was the chemo. Anyway today for the first time the fluid started to go down, I had chemo 1/10 so this was day 9 or 10 depending on how you count. I hope it continues to go down because swollen legs hurt. Anyway does this fluid last the entire course of chemo or come and go like other SE?

    Thanks, Sheryl

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  • Watta
    Watta Member Posts: 22
    edited January 2013

    Ciao Bellas,



    Gd2shuz, honeybair - Welcome! If you have to have BC you found a great support group. We are all supporting, learning and sharing together. Nevertheless, I wish you didn't have to be here....



    Gr8flmama, Soteria - I sure hope you're feeling better! I've been so afraid of catching something I've become a hermit in my own home.



    SherylB - to look on the bright side, as your iron level builds, you may actually feel better at the end than you did at the beginning.



    Gd2shuz - I found that the waiting was the hardest part, it seemed that every time I got an answer to one question, it raised another. My biopsy results first showed triple negative. After they retested the tumor removed during surgery it was found to be weakly estrogen positive...when I asked why, my MO said it was so weakly positive that the first biopsy simply didn't take any of the positive cells. As a result I'll be on long-term hormone treatment as well. Once you get some final answers you will feel much better. And please talk to your MO about driving alone to and from treatments, because they put anti-anxiety drugs in my IV before the AC. That plus stress really knocked me out.



    Skimommi and the other germophobes - funny story, gave me a laugh :) and you aren't the only germophobes, I've barely left the house since October 26 when I first knew I had months of treatment ahead of me. Then the flu season hit....I'm a bit stir crazy :)



    Amrdbit - I'm keeping my fingers crossed for your hair, let us know how well it worked!



    emmaL - I second skigirl...there is a whole range of how SE's can affect you. Some of us are pretty lucky and don't have many at all. Remembering my mothers experience makes me realize how far treatment has come in managing SE's. it's definitely doable.



    Kimmean - (((hugs and more hugs))) for you. I hope today was better.



    Skimommi, bryona, Sheryl, honeybair - it's such a roller coaster isn't it, bursting into tears at the most unexpected times, high energy and low lows. Together, when one of us cries, we all cry, and when one of us is happy, we're all happy too.



    Lisaruby - great news!!! You're movin' on :)



    Amrdbit - what about wheat? From what I've heard and read it is very bad for us because its been so genetically modified that its nothing like the original wheats. I'm trying to eliminate it from my diet but it's sooooo hard...



    Oliverhog - (((hugs and more hugs))) to you. I hope the doctors and oxy can give you some help getting through this. Thankfully oxy works for you... I'm allergic to it!



    Kiwikid - trust your instincts, women have them for a good reason :)



    Honeybair, Soteria, LeeA, gd2shuz - I'm glad to know others in our little "older ladies" subgroup! i'm 60 yo, have a wonderful DH, three great kids (son 30 & daughter-in-law, daughter 28, and daughter 24) and one grandson on the way.



    SherylB, hope49 - I've had very dry lips since I was a teen and have tried so many things. Even now during chemotherapy I have dry body skin but I don't have dry lips...the BEST thing I have found is Dermatone Camphor Ice Skin Balm. I have to order it online by the box and I have so many tubes right now. I'd be happy to send each of you a tube if you can figure out how to give me your addresses.



    My ILC was slow growing and never showed on mamo for many years until the last one. It is notoriously hard to find in mamo's, it is difficult to find manually and is usually larger than expected when they remove it because it is so stealthy. Doing routine mamos is certainly important, that's how mine was finally discovered. I couldn't feel it until I knew where to feel it, and even then it was difficult. I had one surgeon ask ME where it was!!! Needless to say I didn't choose her! I've never had an MRI but I wonder if it could have been found sooner by one.....



    Buzzed my hair off yesterday. Bought 2 wigs today, pick them up next Saturday.



    My love to you, my friends :)









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  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    Watta,

    What a wonderful, generous offer to send us the Dermatone Camphor....lip balm. I found it on Amazon.com for <$11 for two tubes. The postage to send it to us would be more than ordering it myself. Thank you for the suggestions and the generous offer.

    Sheryl

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  • Watta
    Watta Member Posts: 22
    edited January 2013

    Sheryl, great! That was fast, I'm impressed :)

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  • SeattleMama
    SeattleMama Member Posts: 147
    edited January 2013

    Watta-that was so sweet!!!!

    sheryl, vaseline petroleum jelly is carcinogenic.....not the way we want to go

    others I found :http://www.badgerbalm.com/p-414-classic-lip-balm.aspx
                           http://www.amazon.com/Softlips-Organic-Pomegranate-0-07-Ounce-Package/dp/B001G7RBT4
                       and EOS Organics at Target

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  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    SeattleMama,

    If there is one thing that is for sure, it is that if we can find an article that says something is ok we can find just as many that say it isn't. You gotta love it!!

    http://www.livestrong.com/article/321517-is-vaseline-bad-for-chapped-lips/

    This web site has doctors from Mayo Clinic that says vaseline is ok, who knows? I am gonna try it for today only and if no better then I will follow other suggestions from you guys and try something else because they seem to be getting worse. And what do we do with chapped lips, lick them.!

    Thanks all for sharing that is how we learn and find what works for us.

    Sheryl

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  • hope49
    hope49 Member Posts: 370
    edited January 2013

    Watta, thanks for the kind offer...I will check out that brand...I'm a runner (usually!) and am always looking for something long lasting. I am aware Vaseline isn't the best, but I'm trying to get thru this phase the best I can , and will definitely be 'cleaning up my act' afterward...I think the chemo drugs are probably riskier than anything I may be using and will be happy to put this all behind me and go back to healthier habits. I appreciate all the tips for my post tx shopping list, :).



    Sweet dreams, all!

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