September 2013 Chemo Group

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  • lighthouselady
    lighthouselady Member Posts: 752
    edited October 2013

    Thx SpecialK.



    Oh, the joys of steroid-induced insomnia. I haven't been taking them (no need) but with this weird acne/rash they suggested I start. Ugh. 11:30pm and I'm wide awake. And of course tomorrow is one of the two days I work this week. Yawn.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013

    lighthouse - I was a bad sleeper before cancer, and I still am!  Are they planning to keep up your steroids during Taxol as well?  For the first three tx I only had them the day of chemo, but I developed a rash at the half way point, I know that it was from an antibiotic taken for a UTI but because they couldn't prove that I had to start with the three day steroid-fest!  I used the sleeplessness to prepare for the next tx by cleaning, catching up on laundry, etc., but I started to stretch out the ones I took afterward so that I could avoid the crash.  Shhh, don't tell my onc!

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  • lighthouselady
    lighthouselady Member Posts: 752
    edited October 2013

    I've always been a GREAT sleeper until the day I was dx.  LOL

    I know they give me steroids in my premeds on chemo days, but they only gave me pills for at home after I got so sick my first infusion.  Since then I haven't had to take them.  I'm supposed to take two a day, but I'm only taking one... so shhhh right back at you.  LOL  

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013

    I love a rebel!

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  • Miss_Mama_Bear
    Miss_Mama_Bear Member Posts: 252
    edited October 2013

    Hey ladies! I had a rash all over my face last round. It was like little whiteheads and some were more clear-filled. I am not sure what it was, but my onc said it was fairly common with chemo drugs, just not the ones I am on. He called me out a script for antibiotics and that cleared it right up. 

    I am FINALLY doing better as of about 8:00 tonight! That round was hell. I went in today because my incision into my neck for my port was all red (not sure how long it had been red because the steroids make my entire neck and chest lobster-like) and it is infected. The incision only at this point. I had my surgery on August 30th! I thought it was completely healed. I don't know if it happened because my white count was super low or what. The PA said that she was thinking that all my counts were really low. I'll find out tomorrow. She recommended that I get my nausea meds as slow as they can give them to me because that sometimes will give you a headache (the most unforgiving headache ever, in her words, I agree). That has been the worst for me. I feel like mom of the year because I spent most of the weekend yelling at the kids to be quiet because I couldn't stand any noise. I think the menopause crazy has hit too. Oh and I contracted a lovely stomach bug. I don't' know why I didn't think about taking my nausea meds for that until this evening lol. I am a mess. But still, I managed to take a handful of pills and make it to my night class, dragging myself by my hair (haha). I feel much better now and that is the important thing. 

    Rayna! I can completely relate! I am so very scared of surgery. My oldest is 63 pounds and cannot walk and I have no idea what I am going to do. I know I am looking at at least 6 months of not being able to lift him while I recover and then gain my strength back (I already have issues lifting him on bad days) I feel like a super crappy mom when I am short with the kids because I don't feel good, and because I can't do fun stuff with them and I know they are bored and missing out on stuff. I don't have anyone to do anything with them either; it is all on me. I know it is hard and I am sorry you have to go through it too. There is an end is sight, though! Someday they will look back on this and say "wow, mom, you kicked cancer's ass and still managed to keep us alive" lol. I think that the little stuff will be lost along the way as many memories will be. Just do your best and do what you can do. We have a lot of movies nights and just cuddle. Hang in there!

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  • Shalimar630
    Shalimar630 Member Posts: 100
    edited October 2013

    Mankatostate: I absolutely agree, we have to get through this treatment before crossing it off, darn it.

    SpecialK: Thanks so much for the info. I printed some out and will take them to the gal tomorrow.

    LHL: I also had bags of ice in a cooler and my husband went and got me a big cup of ice chips. I had a blanket on my lap so it just looked like I was eating the ice. No one saw the ice bags.

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  • taguekids6
    taguekids6 Member Posts: 69
    edited October 2013

    RAYNA!!!!!!!!!!! SUPER, GIANT HUGS to you and much prayer! I think the suggestions on just cuddling up and having movie days or nights are a great suggestion. Your son, if he is anything like my kids, just needs to be with you, to see your ok, your still mom. I also think making plans for something special to do together after you're all healed up from surgery, will help him understand that there is an end to this and you're going to be ok.

    Congrats on your last chemo! You got this!! You are almost to the finish line!!!! Show em what you're made of !!!!!

    Much love,

    Kimberly

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  • JellyK
    JellyK Member Posts: 150
    edited October 2013

    (((Rayna)))  I'm infuriated on your behalf at your husband, but mostly because my ex-husband was very similar and I'm making vast assumptions about the attitude he's giving you, lol.  What your son is going through is NOT your fault - it's cancer's fault and chemo's fault, you are the amazing strong woman who is bearing the weight of going through it, and so is your son (although he's an amazing strong boy, not woman :-P).  I second (or third?) the suggestion of talking with his school counselor, as well as any oncology counselors you might have available.  And honestly, it couldn't hurt to look for support groups and/or oncology counselors for you and your husband too.  SOMEONE needs to get it through your husband's head that you are not going to suddenly pop out of bed and be the person you were 6 months ago, and a counselor or group leader might be able to do it in a way that is gentle and understanding of what he's going through too.  As for surgery, be ready for anything.  I had mine in July, and the July Surgery thread women had recoveries as varied as our SE's on here.  In my case it was 4 days inpatient, and 2-3 weeks before I felt even a little bit normal, for others they bounced out of the hospital a day after surgery and walked 3 miles a day every day after (I secretly hated them a little, lol).  Lots of us on this thread have been through surgery, so feel free to ask questions and vent about any fears you have :-)

    Went for my 3rd treatment today, still unbelievably grateful I delayed a week.  The 1st-day steroids are doing their job so it's 3am and I'm up typing, lol, but so far *fingers crossed* I've stayed ahead of the nausea.  I've also been adding Metamusil to large glasses of orange juice all day too, in addition to my stool softeners, so wish me luck in the morning, lol.  It's always that first..ahem, release ("...release the Kraken") that's the scariest.  My first treatment I spent an hour in the bathroom, crying and wishing I had something to either get it out or just knock me out.  My second treatment I used laxatives, but that just made the pain more intense and flared up my hemerrhoids so bad I couldn't sit down for a few hours.  So here's to Metamusil, high fiber cereal and yogurt, lol!

    Oh and it's my birthday today :-)  My mom is making me a pumpkin pie, since that's not as sweet as cake so I might actually be able to taste it, lol.

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  • taguekids6
    taguekids6 Member Posts: 69
    edited October 2013

    JellyK,

    Happy Birthday!!!!!!!! ((((((hugs))))))) to you too! Although, not the most ideal for a birthday, I hope it's wonderful none the less!

    So, life does keep moving after a cancer diagnosis. SURPRISE!!!!!! We are foster parents. My 2 yr old is actually not mine yet. He was placed at 4 mths with us. We are in the middle of termination of parental rights of the bio dad. Bio mom term. volutarily. Then we move on to appeal and then finally adoption. We got a call Friday asking if we want baby sister placed with us. She is 9 mths old and just removed from mom. We said yes. I soooooooo want these two together, no guarantee she will be staying, especially if mom gets her act together.

    Just very concerned about having to go through chemo while trying to take care of her as well. My senior daughter, is doing so much already. So are the other kids but she seems to be taking on much more. We asked before hand of course and they all are excited, I'm just worried with the posibility of chemo looming over me that it will be way too much for everyone.

    Onc said it would be once every 3 weeks for 4 rounds. I believe he said Cytoxan, not sure what the other was. I figured I'd worry about it after my oncotype comes back.

    Could really use some prayers for all of this. Not sure when exactly she will be coming but was told to get her room ready.

    Kimberly

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  • JellyK
    JellyK Member Posts: 150
    edited October 2013

    Wow Kimberly, life really doesn't stop moving does it?  What a blessing it will be to have the siblings together, but I hear you on the concerns.  One day at a time, sister, make each decision with your heart and a quiet mind and it will be right.  Hats off to you for fostering!  

    So far my birthday is being celebrated by being awake since 1:15am (it's now almost 4), and a sleeping 3 year old next to me.  I really should move her back to her bed but she's warm and snuggly and (for now) not thrashing around yet :-)

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  • soccermomof4
    soccermomof4 Member Posts: 117
    edited October 2013

    Jelly K  - A very SPECIAL HAPPY BIRTHDAY wish coming your way my friend!! I hope you have an absolute awesome day with NO SE's & lots to smile about!!!! Blessings!!!

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  • JellyK
    JellyK Member Posts: 150
    edited October 2013

    Thank you soccermom!!!  And thank you to Kimberly too, just realized in all my ramblings I never said thank you, lol.

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  • lighthouselady
    lighthouselady Member Posts: 752
    edited October 2013

    Happy Birthday JellyK!!!!!!!!!!!!!!!!!!!!  Hope it's a wonderful day!

    Kimberly - WOW!  Congrats on the baby girl!  How wonderful that you are a foster/adoptive parent. Two of my closest friends are as well. I hope the transition is smooth.  That's a big step, but a wonderful one!

    So SpecialK - looks like JellyK wanted to join our insomnia party last night.  LOL  I think I was up until after 1:30am... man I hated that 6am alarm for the kids.  And of course I have to work today.  Boooo.  I shouldn't complain because it's a piece of cake job.  Assistant bookkeeper/secretary for my husband's company, but still.  I'd much rather be home on my couch in my pjs.

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  • BabyRuth
    BabyRuth Member Posts: 264
    edited October 2013

    JellyK-Happy Birthday!  Pumpkin pie, I could eat that for breakfast, lunch and dinner!  I hope you have a wonderful day! 

    Kimberly-how exciting that you are a foster parent.  What a great gift from God and a wonderful addition to your family!

    LHL-wish I had known about the party last night-I could have brought the popcorn!  I have a really hard time sleeping but that has been going on for years.

    Special K- thanks so much for all your advice.  I know we have all said it before but it is so important to us to have someone like you who can help us with our questions and concerns.  You are an amazing wealth of knowledge.

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  • Miss_Mama_Bear
    Miss_Mama_Bear Member Posts: 252
    edited October 2013

    Happy birthday JellyK!!!! 

    Is anyone bald/bald yet? Just curious. After I shaved my head all the way down my hair/stubble stopped falling out for the most part. I could tug on it and and it would come out but it wasn't just shedding anymore. Yesterday I had some start to fall out in the shower again and am now getting some actual bald spots all over. Still no budging on any other hair besides the down under stuff although growth has slowed way down or stopped. 

    Kimberly I think that God doesn't put anything on you that you can't handle. It is so wonderful that you are fostering. My ex-husband and I were going to but the last week of class I found out I was pregnant (with #2) so we decided to postpone it until after baby was here. Then baby#3 happened right after, and then a divorce. I can't wait until I am on my feet and my littles are a bit bigger so that I can start fostering. I think it will fill in the hole I have a bit for not being able to have anymore of my own. Stupid cancer. I was seriously going to go to a sperm bank in the next couple years if I didnt' find someone and have a baby lol. I think you will do just fine. This is just temporary and with a great support system, like it sounds like you have, it will all be okay!

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  • lighthouselady
    lighthouselady Member Posts: 752
    edited October 2013

    mamastewart - I'm not bald.  Granted, I used cold caps for my first two treatments, so that may be why.  I have very thin/almost bald spots and just a thin covering of hair, but still all over my head.  It comes out by the dozens when I shower, though, so I think it's just a matter of time.  The hair on my legs has stopped growing, but I still have all of the hair on my arms.  Why is that?  

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  • KBeee
    KBeee Member Posts: 5,109
    edited October 2013

    Mamastewart, I buzzed my hair 2 days befoer chemo, but the 1/4 inch long hairs that gre in started to come out last night in tiny groups if I'd pull on the,.  Today they come out in clumps.  I really don't want little hairs all over the place, and they won't come out with tape yet, so I'll probably spend most of the day pulling my hair out...literally!  My  hair down there mostly went yesterday in a big cluster.  Lovely, eh???  Also, as far as helping with your oldest, there is a website called lotsahelping hands...or something similar to that, which lets you create online sign up sheets.  I would create one with some days and times friends, coworkers, etc could help.  People want to help, we just need to determine how to best use their help.  Since your oldest is a bit heavy, maybe enlist hubbies of friends, or friends work in pairs if some of your friends can't do the lifting.  You amy also look into a home health person stopping by, or looking into renting a lift of some sort.  I'm just kind of brainstorming as I type.

    Kimberly, perhaps you coudl do something similar during the fostering initially.  Put a sign-up in place for friends to come by fo ran hour or so here or there to lend a hand  What an awesome thing you are doing!

    JellyK - Happy Birthday!  I hope you are feeling better and can enjoy your pumpkin pie.  Yum!!!!!!!!!  You are making me crave some!

    Good luck to all in the big girl chair today.  I think I'll go pull some more hair out.  Wait until my husband sayd, "what did you do today?"

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  • kjsimpson
    kjsimpson Member Posts: 445
    edited October 2013

    You all are simply amazing, caring, and loving people! Reading your stories of struggle and success is so motivating.  Thank you, all!

    Five days into Round 2, feeling a small turn in feeling better.  The fatigue was much harsher this time.  Bone pain less (am crediting claritin with that). Couldn't find any food (except potato soup) that tasted ok.

    Borrowed a rotary razor for my head.  A quick buzz each morning helps smooth out the sandpaper and makes me feel better.  Mainly feel like Mrs. Magoo.  ;-)

    Might get to the gym today for an easy workout.  Weights and walking.

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  • Mariannex5
    Mariannex5 Member Posts: 21
    edited October 2013

    I guess I can join you as I started chemo on Monday, Sept. 30th.  Metastatic breast cancer - first appeared in September of 2001.  No chemo the first time - just lumpectomy, radiation and tamoxifen, then arimidex.

    Marianne

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  • kjsimpson
    kjsimpson Member Posts: 445
    edited October 2013

    MamaStewart,

    I'm bald as Mr. Magoo.  Highly suggest using a rotary razor to drill down the stubble.  I found the stubble painful.  The rotary razor really helps.

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  • JellyK
    JellyK Member Posts: 150
    edited October 2013

    Thanks for all the birthday wishes :-)  I think a nap is in order today, since I was up basically from 1:15am when I got up to pee, until 5:30am when I finally just turned out the light and gave it a shot. Alarm went off at 6:45 to get the kids up and off to school.

    Welcome Marianne, this is a great group of supportive women :-)  What type of chemo are you on?

    Mamastewart, I'm basically bald, but there's this sort of layer of thin stubble that doesn't seem to be going anywhere - the stubble from the thicker hair is gone, and that's what was hurting with scarves and hats and lying on a pillow.  My arm hair is staring to pull out if I tug on it, as is the hair above my lip, which means my eyebrows are probably on a clock :-(  It's winter so I haven't noticed my legs, I shaved right before my sister's wedding on Sept 21st, not much grew back from that.  The hair down under isn't completely bald either, but you can pull it out if you tug on it.  Usually I take a wash cloth and rub my head all over in the shower to get as many of the hairs out as possible, it feels wonderful :-)

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013

    Ladies - you are welcome - please ask any questions you may have!

    I never went totally bald, and I lost my hair very late - day 24 - my onc was amazed!  Those of you on AC then T may find their hair startes to grow on Taxol, this is not uncommon.  Also, if you have stubble that is falling out some use one of those tape lint rollers on their head to get those tiny hairs.

    jelly - happy b-day!

    lighthouse - insomniacs unite!

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  • lighthouselady
    lighthouselady Member Posts: 752
    edited October 2013

    Marianne - Welcome & sorry you have to join us (again).  {hugs} and best wishes as you go down this road again.

    Kbee - Good luck to all in the big girl chair today.  I think I'll go pull some more hair out.  Wait until my husband sayd, "what did you do today?"  This made me laugh out loud.  Honestly, we have the BEST group of girls here.  I wish we could all hang out and visit for real.  What fun we would have.

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  • lighthouselady
    lighthouselady Member Posts: 752
    edited October 2013

    Oh, I remember what I was going to post.  I know a lot of us are having taste issues, especially with drinks.  I think I drank so much Sprite after my first three infusions that I've worn out its welcome.  Anyway, my new favorite?  Grape Kool Aid!  I know, not the healthiest drink out there... but it's a liquid and has no caffeine, so I'm going with it.  It tastes GREAT!  Smile

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  • kjsimpson
    kjsimpson Member Posts: 445
    edited October 2013

    I'd like to thank Congress for giving me a few extra days to recouperate from chemo this week.  Sigh... trying to look for the positive.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013

    kjsimpson - my husband is home too and just got out the hedge trimmers and is giving everything in the yard a haircut.  Furlough could be a dangerous thing!

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  • JellyK
    JellyK Member Posts: 150
    edited October 2013

    kjsimpson, I'm so sorry for your furlough - I'm staying out of the party politics, but I'm ENRAGED that congress is still getting paid through this.  Why aren't THEY considered federal workers?!?!!!!  Uch...

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  • soccermomof4
    soccermomof4 Member Posts: 117
    edited October 2013

    Mamastewart - I am very anxious about the hair thing, I feel like I am sitting here waiting for something to happen!! I know when it actually happens I might flip out. I am on day 8 after 1st treatment, so don't know when it's coming.Eeekk!!! I need to go get a few scarves/hats to cover up when it is chilly at night yet.

      Stevens - Hope you are soon feeling better!!

    I am wondering do most of you have worse side effects after you get a few treatments? Or does it stay kinda even the whole time?

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013

    soccermom - side effects are cumulative, but many will tell you the first tx was one of their worst.  For me it was #5.

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  • lighthouselady
    lighthouselady Member Posts: 752
    edited October 2013

    Soccermomof4 - I am on day 7 after AC #3.  I have to say that I am feeling as good as I was at this point after my first two.  The nausea & fatigue stuck around longer each time (2 days the first, 3 days the second and almost 5 days this time), but once I bounce back, I am about the same.  For most people the effects of chemo do add up, so the more treatments you have, the worse you feel in general.  Of course, as with everything, everyone is different!  (And I may be singing a whold different tune once I start taxol!)

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