Starting Chemo, November 2013 Group

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  • Paulette23
    Paulette23 Member Posts: 499
    edited November 2013


    morning! hope its a great day for yall!! Quirky girl HOPING!!!!! how u doing kathy? for some reason I am not getting email notifications about yalls posts! it said 7 under my favorite topics. .... any ? hopefully we can find out why it does that and won't let me start neq paragraph

  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited November 2013


    No chemo today, skin isn't ready. I go back on December 6th for a recheck and start on the 9th if she thinks I'm ready. The upside is that I'll be able to enjoy Thanksgiving break with my kids.


    Sending out good vibes all of you today!

  • Palameda
    Palameda Member Posts: 259
    edited November 2013


    Good luck to all starting this week! Among all the talk of colace, etc., I'd like to add my bid for having Imodium around the house, I suspect it's really hard the first time it know how your body will react. Some of us get C, others D, and others alternate. Great fun!!!

  • Paulette23
    Paulette23 Member Posts: 499
    edited November 2013


    AAAAAARRRRRRRRRRRRRGGGGGGHHHHHH! sorry for screaming so loud. I can't believe how insensitive husbands can be sometimes. With our treatments so entwined with the holidays it makes having absolute plans difficult. They tell us to avoid crowds, avoid sick people, avoid, avoid, avoid..... My third chemo around is the 23rd minute left on the 24th of course the following day is Christmas. My husband says to me this morning everybody is going to be at my mothers house for Christmas this year!! I told him,"I can't go.... It is 2 days after my chemo treatment and we have no way of knowing how I will be feeling or what my system will be like on that day." he got all angry at me and made that disapproving face ..... Then said your going even if you have to wear a mask the whole time! I told him that was ridiculous because we're talking about a very small home with at least 30 people crammed in. This is not even addressing how I may be feeling or my counts! Then he said, "well I'm going!" he continued making that disapproval face as I said I'm not making this choice to purposely not want to go to your mothers house for Christmas,. It is just that we have no clue what thanks will be like on that day ! Then he very angrily said, fine... We're not going!! And he left for wk. He acts like I'm choosing to use going to chemo is an excuse not to go to some mother's house. Because of my other health issues I have been unable to go to some family functions in the past and he has gone alone. But this year I need him here! But he makes me feel like I'm depriving him of his family. I've never stoped him from going or ask him to stay home in the past when I was unable to go. I would tell him and the children (grown now) to go and have fun! Its sucky enough having to deal with all of this during the holidays but when your hubby acts like this... It really hurts! I just want to yank this port out and screw the whole thing! I did not need that this morning! I already feel isolated enough because of my other health conditions now I feel like I'm invisible! Sorry venting for so long. I needed to talk to vent before I explode. I can't stop crying now...sorry I can do paragraphs! grrrr....

  • audra67
    audra67 Member Posts: 521
    edited November 2013


    Paulette I'm so sorry. Even the sweetest most sensitive husbands sometimes screw up! How upsetting!! I wouldn't want to be around 30 people either! You could end up in the hospital! I'm sure he will be over it after work or maybe he is having a hard time dealing with you having this and doesn't know how to act! Either way he needs to figure it out and help you through this! The venting is good i would be livid!


    I hope he gets a better mind set and if not maybe he needs to go to Dr with you to hear of risk of infection and what that might entail,,,


    good luck and be happy for today and hope it will get better for you!

  • BeanBean
    BeanBean Member Posts: 32
    edited November 2013


    Quirky...sorry for the delay, but enjoy the turkey!


    PatAlameda...thanks for the tip. I did get some Colace and Immodium. You just never know.


    Sorry for the rough morning Paulette. The holidays are always emotionally charged times. Add in cancer and chemo and it's just too much. I hope you can come to some sort of compromise that satisfies everyone. For good or bad, we don't have any family close by. It will be me and hubby and two kids for both Thanksgiving and Christmas.


    Gotta get ready to go to medical center.


    -Kathy

  • audra67
    audra67 Member Posts: 521
    edited November 2013


    I take psyllium husk with juice daily even before this and haven't had any diarrhea or constipation, it works great, just one tsp in juice stirred and follow with water,,

  • Palameda
    Palameda Member Posts: 259
    edited November 2013


    ohhhh so sorry you can't start Quirky. Here I am looking forward to more inspiring crafts! I do understand about the skin, tho. My wound has mostly closed again, but that chemo did a number on my skin and I regressed. Don't panic about the delay.


    Paulette, give yourself a good cry. This holiday season is totally screwed up for all of us and our families. Any possibility this was your husband's way of venting about the C and how it's affecting him too? My husband has been great, scary great. Better than he's been when I'd had babies or had flu. I'm on edge waiting for him to explode. This disease gets the entire family, not just us, the patients.


    My gift today is back pain. Every day a new and special surprise!

  • VirginiaNJ
    VirginiaNJ Member Posts: 634
    edited November 2013


    So sorry for you ladies who have your chemos scheduled so close to Christmas :(. The first thing my onc did was look at the calendar to make sure my treatments were as non-disruptive as possible. One of my treatments interferes with New Years but that's ok lol.


    One day post treatment 1 I have a metallic dry mouth and am "going" a lot but it's not loose (trying not to be graphic lol). Really thirsty too---so trying to chug my water. Woke up nauseous so I took an anti nausea pill so that helped. Thanks to the posts here i took it to nip the nausea in the bud.


    Hugs to ALL those who are struggling with medical blips or unsupportive fam...


    Best wishes to all starting today!!


    I go for my Neulasta in a little while. My nurse suggested Claritin but didn't push it. Guess it wont hurt...

  • audra67
    audra67 Member Posts: 521
    edited November 2013


    OK, just got my period, really? I thought chemo was supposed to shut down my ovaries...???!!!! So if that's not killing my er / pr + does that mean any new cancers can grow? since obviously the hormones appear stronger than the chemo>??? worrisome...and annoying...one more thing...always the bleeding...I want to be DONE!!!

  • wrenn
    wrenn Member Posts: 2,707
    edited November 2013


    I soak my toothbrushes (and electric brush heads) in alcohol to be sure they are clean.

  • VirginiaNJ
    VirginiaNJ Member Posts: 634
    edited November 2013


    Audra - I never missed my period on AC chemo....or on tamoxifen.......and my reoccurrence was triple negative which meant the prevention the first time around worked. Keep the faith! I am due to get my period any day too :(

  • gavinsgrandma
    gavinsgrandma Member Posts: 407
    edited November 2013


    Hi Ladies, I am from the August chemo group but just wanted to say Hi and keep up the good work, you can do this!!!!!!! I am going to go through and brush up on your post's as I can and I will follow into December. Hugs to all and wishing you all a peaceful day.


    Shary

  • Paulette23
    Paulette23 Member Posts: 499
    edited November 2013


    thanks yall...what causes extra problems I have been dealing with medical conditions since I was 10 years old so it gets really old for my husband and family to have to deal with it and here we have something new! What makes it even more difficult is he is an RN! Just like a plumber when he gets off work he doesn't want to nurse! So I end up getting the short end of the stick. I must say he has been very supportive generally. A bit more than normal but sometimes he can be so insensitive perhaps he wasn't even thinking. Just starting the day out with him being pissed off at me was not a nice way to start! Sorry Corky that you can't go today. That's a real bummer! Hang in there and treat yourself to a nice meal that you won't enjoy after you start chemo! In reference to the go go or not go go situation! Since a child I have had gastroparesis so I don't go unless I take something! After the first dose of CT I was running for 24 hours! Then back to my normal pattern of nothing for almost a whole week even taking citrucel, docalax and finally had to do an enema which they generally do not want you to do but I was left with no choice!

  • Paulette23
    Paulette23 Member Posts: 499
    edited November 2013


    is anyone else petrified that their house is going to make them sick? My house was built in 1960. Its old, dusty, & I am positive we have mold since we now have developed a leak in my roof/ ceiling! Just normal upkeep around here is difficult enough for me. Now I have not been able to maintain it to a decent standard and I'm afraid to clean ..........I don't know what to do ..........suit up in a hazmat suit and try to clean up some. Also when you go in tonight dear face when you go out are you wearing gloves and masks, or are you not going out, or are you just keeping your distance and not touching things?

  • Amazonwarrior
    Amazonwarrior Member Posts: 485
    edited November 2013


    audra67: I haven't cut my hair either, but planning on it this weekend. I want to get my 8 year old son who has autism involved in it as well. I told him that I would like to get a haircut just like him. He seems to like the idea. We can go to a hairdresser together. I just don't want him to get all upset over my hair loss, so gradual change might be more acceptable for everyone involved. I wonder how it is going to be for me, since I always had long hair. Would I have to cover all my mirrors?

  • Paulette23
    Paulette23 Member Posts: 499
    edited November 2013


    I have a topic yall may be interested in..ENERGY! NO ....I'm not trying to sell u some hoo..de..doo! there is a med called provigil or modafidil...it used to only b approved for narcolepsy, apnea, shift disorders I used yo yake it for chronic fatigue till insurance cut it off. many insurances will cover for cancer ptts! it really works by giving a boost and helps u think better! the military actually gives it to piolets and those who need to be sharp for long periods. on sick people it just makes u a bit more normal. your MD or MO would need to say its ok in ur situation. ...If u can take it it is AWWWWSSSSSSOOMMMME!

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


    For those who are about to start, be careful not to treat GI (Big C or Big D) until you know which you will have. I never had C at any point, only D, but I had it each treatment. If I had started preemptive C stuff I would have been a real mess, and even more dehydrated!


    For Neulasta - take the Claritin!!! Take a regular 24-hour Claritin (not Claritin D) at least an hour prior to the injection, and continue for at least several days. Here is a link to the clinical trial, and be sure to get approval from your MO first for any OTC drugs.


    http://clinicaltrials.gov/show/NCT01311336


    On the subject of crowd avoidance - I never wore a mask and never avoided crowds, didn't use hand sanitizer - just washed my hands A LOT! I was receiving Neulasta and weekly CBC (complete blood counts) that indicated I had adequate WBC (white blood cells) so I had no need to avoid crowds. I went to the mall, grocery shopped, ran errands, and did all of the normal things I would have done before chemo. My daughter was sick a couple of times while I was receiving chemo - I went in her room, did her laundry, washed her dishes, etc., - never had a problem. I went to a big wedding two days after my fifth TCH, no problems other than being a bit tired. Everyone has to do what they are comfortable with, and what their docs recommend. The nadir for WBC, which are your infection fighting cells, is not until 7-9 days after infusion. If you are not receiving Neulasta after each infusion you may have dropping counts, but if you are on Neulasta - and your counts remain stable - you can be in crowds and public places according to your tolerance and your MO's advice.

  • eatdessertfirst
    eatdessertfirst Member Posts: 4
    edited November 2013


    Paulette23-you had asked about hair loss. If you count infusion day as Day1, I'm on Day 13. No hair loss yet, but I'm thinking any day now. I'm all set...wig, hats, head scarves...not sure what I'll want to wear so I have options!


    Good luck to the rest of you out there who are in the BGC today! My symptoms were mostly nausea for a week or so, vomiting on day 1, and really bad heartburn. Oh, and a bit of constipation. After a week, I felt back to normal though, and thankfully, as my 17 year old daughter had a lead in a drama production that I really wanted to see, so I got to go on Saturday night!

  • Paulette23
    Paulette23 Member Posts: 499
    edited November 2013


    thanks specialk! that's the first people info I heard! I am on nulasta and septa....with history of severe septocemia MRSA and polycyropenia...autoimmune stuff....and and.......just waiting to see how my counts faired. will do tomorrow. have my port plus a huber already there for fluids should b an easy draw! PRAISE GOD!!!! my veins were done years ago w health junk.

  • Paulette23
    Paulette23 Member Posts: 499
    edited November 2013


    went to the ACS this morn got some hats and tWo wigs.... one nothing special like mine normally. the other a waist long hit rocking blond!!!! it actually looked good! I AM NOT. a red head!!!! horrible!

  • Gina-B
    Gina-B Member Posts: 4
    edited November 2013


    Thank you all for your suggestions, I had never thought about many of the questions that a lot of you asked so that is helping me to be prepared. I hadn't even thought about constipation or diarrhea, I am so focused on the N/V that I dread so much. That and the possibility of permanent baldness, that would stink to go through all this and notget your hair back. I am only 35! I don't want to sport a chrome dome forever. Everyone tells me not to worry, there is only a 6% chance of that happening but there is a 12% chance of getting BC, and only 5% of women who get it are under 40 so I am not good with 6%, I lost the bet once already! Sorry, I will stop whining now.  

    Fairy Dog Mother - I hope that your treatment goes well tomorrow, I am right behind you on Thursday.

    I am so grateful for all of you posting your experiences and how you handle it, this site is a God-send! I am back at work trying not to focus on "the big day". I will be running to the store after work tonight and grab some of the things you all suggested.

    Thank you all!

    Gina

  • Sunny4Days
    Sunny4Days Member Posts: 15
    edited November 2013


    Hi eatdessertfirst, I started my chemo on the 7th and am currently doing the hair watch like you. I usually never wear hats, but I got a cute knit hat and scarf from Garnet Hill in the mail today that I know I am going to put to good use.


    Paulette, I am so sorry you have been having such a bad time, especially with your husband and the holidays. My Dad is the one that drove me nuts this week. I called him to set up dates for our holiday get together. It is just him and my sister's family. Based on my chemo schedule, there is only one weekend for Christmas that works for me, but he already has plans with his girlfriend's family that weekend so he says, "I guess we won't have a family Christmas this year." Nice! I was feeling snarky and wanted to say something like, "Then I hope I'm around for Christmas next year." He normally is a great Dad, I was just feeling crabby. I called my sister and we are going to get together anyway.


    Gina-B, I hear what you're saying about odds. I was diagnosed at 39. I've decided not to read anything that talks about percentages. It is not worth the stress!


    Speaking of stress...I spent the morning setting up a site on CaringBridge.com. We didn't tell anyone but close family what was going on until after my BMX because I wanted to know all the details before I started sharing them. My doctor had also dangled the possibility that if I had no node involvement, I could skip chemo and just go onto hormonal therapy. I figured if that was the case, most people wouldn't need to know anything.


    Unfortunately, the nodes were bad and so we slowly started to let people know since my soon-to-be-bald head would clue them in. I feel like I told 5 people and they told 5 people and they told 5 people and so on...and everyone of them wanted to talk to me personally to get the story first hand. People started dropping by with what my DH now calls cancer chocolate. "I'm so sorry you have cancer, here is a card and some chocolate."


    I am a very private person, but I think I need the site just to get some peace. I can post my update once and cover everyone who wants to know. Someone the other day asked, "How can you be so calm telling me this?" I feel like I have told the story so many times it no longer seems like it is about me. Anyone else set up a CaringBridge site? Any tips?

  • Paulette23
    Paulette23 Member Posts: 499
    edited November 2013


    hi gina & mom nv!!! everyone here is great! its nice to have a sounding boaard to share good and bad. you tend to tell family...its ok....minimize stuff. I haven't heard of that site...seems my family has their own gossip chain! that's why I try not to share too much w them. the story seems to get twisted! ...unreal!!!I understand the snarky desire! I actually SNARKED that at my hubby this morning . I know wasn't cool but it was hard not to viper tongue him back.....:( I hate that I said it. I just felt like ..well.............hoping the diflucan calms down my mouth and femalie stuff! I AWAYS end up w thrush and yeast infections eh gen in antibiotics. aargh! my mouth really is raw. magIc mouthwash is GREAT! OUR LIST IS GETTING SO BIG! hope ev ere is doing ok today! !!

  • Paulette23
    Paulette23 Member Posts: 499
    edited November 2013


    desert. .. glad u got to enjoy your daughter! !!! I miss kids I'm school! !! where did time go! !! IT'S SOO OOOO NICE OUT TODAY! !!!!!!! I live in ocala fl. ...ENJOYING SOME COOLER temps! make s sure u check out that free scarf I listed yesterday! they are nice and have more New colors! MN MOM..... sorry about nodes. ... mine were done Bhutto due to aggressiveness and size of tumor its worth the run. it could also help the lupus! !! praying so!!!!!!!!

  • Paulette23
    Paulette23 Member Posts: 499
    edited November 2013


    I'm wrestling with the Christmas issue. ...I want to go but. ........

  • Palameda
    Palameda Member Posts: 259
    edited November 2013


    Gina & mn mom, I agree about the percentage stuff. Every once in a while I take a look at my reports, but then just find the whole thing depressing, we have no way to predict which side of the percentages we will hit. The very fact that we're here says we are on the bad side of some percentage, and although it's unlikely we we always lose every coin toss, it's all so hard to face.


    I know I'm doing everything reasonable to give myself a long life. I cannot do anything else, nor dwell on bad possibilities. The holidays will be whatever cobbled together thing we can do. I'm having a treatment Christmas Eve, so, oh well. There's always next year! In my twisted little way I'm hoping that my illness brings my family together in non-material ways to appreciate each other, that would be my best present.

  • Amazonwarrior
    Amazonwarrior Member Posts: 485
    edited November 2013


    The percentage question still haunts me. I was deemed 'low risk' for BC two years ago when a specialist was looking into my benign fibroadenoma on my left side. He said that I was at a 'greater risk crossing the road than developing BC'. I wish he was right!


    Well, here I am 42 years old and with no family history of cancer! I guess the percentage just didn't work out for me.

  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited November 2013


    MN_mom - I set up a CaringBridge after diagnosis but before surgery so I could share the news in a way that I had control over and it's worked well. Nowadays, if I post on Cb I share it as a link on my FB page and that covers the bulk of people on my life. I always say the latest in the first sentence so it shows up in the FB link and those who want more info can click on the link to get it. It's also a great way to share info outside of FB and I have people that follow me that way, too. Telling lots of people is exhausting. CaringBridge does it for me.

  • smrlvr
    smrlvr Member Posts: 422
    edited November 2013


    Paulette-I have told my family that we will decide about the holidays probably a day or 2 before. I don't know how I am going to feel and the last thing I want to do is travel and be away from my bed. I also want to keep things as normal as possible for my kids, but I think they should understand.


    Had first AC on Monday and I have had a terrible headache ever since. Last night I swear it was a migraine because I could not have lights on. Was nauseous last night but today just minimal appetite. I don't know what food tastes good to me.

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