Starting chemo January 2009?

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  • Renrel
    Renrel Member Posts: 497
    edited January 2009

    Brenda- I don't know if I will be able to do the bald look or not but I would be thrilled to be that woman  who can feel beautiful despite lack of hair.  I have nice think hair and it has alot to do with my image.  I don't look too great with a base ball cap on because then my hair does not frame my face to soften it, so it will be a challenge.  I will also do wigs, hats, scarfs and whatever else makes me feel good.

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  • BevR
    BevR Member Posts: 101
    edited January 2009

    I have been reading and keeping up this ya'll everyday! Haven't posted much because I'm still trying to "wrap my head around all of it!" I go in for my port placement on Monday then begin chemo on Jan. 15. Not sure the exact combination of drugs yet. We are discussing several possibilities.....

    My thougts and prayers are with you all and I just want to say how much encouragement this group is to me......even though I don't post much, I read the messages several times a day. 

    I do want to chime in on a couple of points:

    one is....I want to continue working. I've been off for since Dec. 10 for surgery and then the holidays (school district). I have a desk job and very understanding supervisors and co-workers. Do any of you have suggestions or thoughts about a "care kit" to keep at work to help with SEs that might follow me there?

    Also, just want to say something about the "kindness" of friends. I love them all dearly but if one more person tells me, "You need to talk to ....... they went through this and they can answer your questions." I WILL SCREAM! I really think I can choose who I want to talk to about my health!

    Sorry, just had to get that little rant in there! 

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  • Renrel
    Renrel Member Posts: 497
    edited January 2009

    Brenda - I also though I would add that while I did not really need all 8 weeks of help the first 4 were definately needed given the restrictions my PS put on me - no lifting arms higher than shoulders, no lifting anything heavier than a milk bottle and no driving and the fact that I have a 5 year old whose preschool is near work not home, so thats an hours commute to get back and forth, twice a day.  I also really needed alot of sleep those first 2-3 weeks.  The next 2 were nice since they allowed me time to rest and think and research, attend support groups and classes, ect.  The two with husband were not needed but he had no choice about being on vacation so there we were. 

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  • brendafromflorida
    brendafromflorida Member Posts: 90
    edited January 2009

    Your situation was different from mine since you had bilateral.  I only had right done with no expanders.  Just did skin sparing for later recon.  And I didn't have any children at home to care for.  That would make a huge difference in having help.   I did a lot of research late at night when I couldn't sleep.  Still do.  The sleeping is still a problem.   It is great that you had the help when you needed it.  

    I am sure you will look lovely no matter what you wear or not.  Let's decide that hair doesn't really matter and go for it!   LOL       

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  • auriga
    auriga Member Posts: 315
    edited January 2009

    webwriter and Renrel: Thanks for the advice about my "helpful" SIL. I think we have decided the hotel is closed. My DH works out of a home office and cannot take any time off while she is here. He already has taken so much time for my surgery and comes with me to every appt. So, he will be in his office with the door shut. If I am not feeling well, I will be in my bedroom with the door shut.

    We both feel she will be more of a hindrance than a help. She talks nonstop and generally just gets on both our nerves. So, yep. The hotel is closed. She won't take this well however and will pout for months. But like you say Renrel, this time it is all about me.

    Good luck to everyone else starting chemo soon. We will get through this.

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  • REKoz
    REKoz Member Posts: 590
    edited January 2009

    Hi Everyone-

    My name is Ellen and I am just thrilled to be part of a "group" having to deal with the experience of this very difficult journey. I had a bilateral mastectomy with expanders on Nov. 10th which was unfortunately followed by a very NASTY infection.Since I am HER2+, I had a port put in at the same time as surgery with a year of Herceptin treatment looming. Very fortunate there as I had  almost 2 weeks on IV Vancomyacin. Infection cleared and I just had the eschar removal and scar revision done last week. Unfortunately (again) a few stiches popped on the lymph surgery side which was just packed and resewn with both disolvable and permanent stitches. Left arm in a sling as a do not use "reminder." It has to stay bandaged until I see PS on Monday but the wound was clean and there does not seem to be any signs of infection. I've been on some sort of antibiotics since surgery so I had developed thrush,(UGH) which has since cleared on antifungals. It sure makes me very afraid of mouth sores when chemo starts though! I'm so glad I've read about the throat coat and absolutely plan on ordering that!

    Anyway, if the PS clears me, I will be starting chemo (carboplatin, taxotere or abraxane which he-my GREAT oncologist- would prefer but may not be covered as an early stage patient) along with Herceptin and anti estrogen in pill form (think Femara, not 100% sure). Originally, I was to be on a 3 week cycle for 12 weeks but he has changed it to weekly with my penchant for infections. The Herceptin will continue for one year on 3 weeks after chemo. Since that change, he took Neulasta off my perscription list and only kept Zofran for nausea.From reading this, I'm thinking I'm glad Neulasta is not in the picture!

    I'm so looking forward to "getting to know" my fellow travellers, comparing notes, advice and most importantly...support. My work situation gives me a little more time of getting by but I REALLY want to go back asap. I believe that will be discussed with my Oncologist once treatment starts and how it effects me is known, My oldest daughter (27...I'm 53, another daughter almost 24), is getting married on July 25th and the sooner this treatment starts, the sooner I can focus on what will be one of the most special days of my life! Not to mention hers and the fact that she can get the attention she so deserves. Of course, she just cares about me getting better but as all you Mom's know, I want to be able to give her all I've got!

    Thanks Lisa for starting this thread (I am soo jealous that you live where you can get instant therapy from warm sunshine along an ocean beach!...too cold on out LI beaches now!) and I for sure plan on being an active member of the "Jewels!"

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  • rsben70
    rsben70 Member Posts: 137
    edited January 2009

    See the ONC today hopefully we'll know when chemo starts knowing that the colonoscopy was OK. I'll get signed up for my trial and know what drugs I'll be taking, I know all of the groups start with Taxol every 3 weeks times 4 cycles and AC every three weeks times 4 weeks.

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  • holtbolt
    holtbolt Member Posts: 625
    edited January 2009

    Hello All... Shavoners, yrawleigh, dpstarr, rsben, ReKoz, rsben,  (ramosce if you're out there - yes please come in)....and anyone I missed...

    Renrel...since I don't start the regimen till the 20th I have been reading and trying to figure out the difference... yeah, it seems AC has been the standard... but I keep finding all these studies that TC is just as good if not better with less side effects... maybe they are equally good?  It seems to me more people are doing the TC than the AC in here (overall on the website) but I don't know why.... it's all too complicated for me....maybe I'll just toss a coin and pick one... onc says either is fine.  If anyone can shed some light.... please....  also.... I cracked up at your comment that you would prefer people react with a hard "Shit!".... I only had one friend do that and I loved her for it.... because inside you know all those sappy "oh I am so sorry people" are thinking Shit! but they give you that kinder gentler reaction instead.  I prefer the real one... because it is Shit and if it happened to them... they'd say just that!  Funny.

    Can I ask who is recooping from a bilateral mastectomy in here?  I had one Dec 2nd and I want to compare notes.... I think I'm recovering at a snail's pace and have physical therapy Tuesday to help me... and my back HURTS.. is that part of it??

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  • lisalisa
    lisalisa Member Posts: 824
    edited January 2009

    Hi Jewels!!! 

    I'm day 11 today and feeling back to normal!  I have 11 days till my next chemo (chemo #2) and 10 days till I take those darn steroids again.

    The only complication that I have is that one of the stiches in my abdomen (i had immediate DIEP reconstruction) popped a while ago.  It was a tiny opening and my plastic surgeon cleared me for chemo.  I swear its a tiny bit bigger now (still small) and has icky yellow stuff.

    Only me!  ugh.  So, its making me nervous and I'm calling the PS today to have him check it out.  I wonder if it stopped healing so well when my WBC went down!?!?!? 

    So, today, if he's in, I'll go see him to have this looked at.  My chemo was moved up at the last second from 12/29 to 12/23....maybe that wasn't the best plan, huh?!

    Anyway, other than that, I'm just waiting on the hair thing.  My underhair http://www.hatswithhair.com/HowToOrder.aspx is not here yet but shoud be here Monday at the latest.  I want to go to both kids' basketball games this weekend as well as a soccer game and a dinner with friends on Sunday.  I hope my real hair will hold out till Sunday night/Monday morning!  Monday is day 14.  Oh, the stresses LOL!

    thanks for listening jewels!  Best of luck to all starting chemo today!

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  • lisalisa
    lisalisa Member Posts: 824
    edited January 2009

    holtbolt - i had a bilateral mastectomy on 11/19.  i'm happy to compare notes if you like.

    i was given a presciption for massage/physical therapy just before christmas but haven't scheduled it yet.  on 12/22, i was cleared to start doing "walk the wall" exercises and such and have started that.  my back is a litte sore but i thought it was from my reconstruction....don't really know!

    Lisa

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  • holtbolt
    holtbolt Member Posts: 625
    edited January 2009

    Lisa.... first off, thanks for starting this thread.... second... you have quickly become an inspiration because you are saying things like "feeling back to normal".... for those of us who haven't started yet, that is huge! lol.

    I had a bilat on 12/2....the nerve pain has died down but I'm still very numb under the arms and can't fully lift the left arm over my head... all along the incision it's numb and like it's not even me.  I didn't have recon (yet if ever).  I keep telling my surgeon that my back hurts.. but he feels it's not because of the surgery... hmmm.. maybe PT will help.. he did give me some muscle relaxers in case it's continued muscle spasms.  Trying not to whine..... Smile

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  • lisalisa
    lisalisa Member Posts: 824
    edited January 2009

    Hi Holtbolt, glad I could make you feel better about chemo.  Truly, its not as bad as I expected.  I need to get my hair cut/buzzed and move on.  Its my greatest source of anxiety about this whole thing!  I was actually a hair model all thru college....my hair is one of my best assets IMO....so this is hitting me hard!  I NEED hair to frame my face....can't imagine just going BALD!  ack!

    I digress.  RE: my bilateral, I had a lumpectomy first and didn't get clean margins.  My arm healed pretty well that time (6 nodes taken).  For my bilateral, I had 11 more nodes taken.  How many did you have taken?  I ask this b/c I think its the node removal, not the mastectomy, that makes your underarm numb!  My surgeon says it will take time to fully regain movement.  BUT....you may NEVER get all your sensation back.  Your arm may have dull sensations and that is reason to be careful i.e. you may not feel pain as easily.  For me, even my bra moving out of place is not as noticeable i.e. I have to look in the mirror more than feel it kwim?

    I would try PT.  I'm going to schedule my first session for next week.  Can you believe I haven't driven since 11/18!?!?  I need to get full range of movement back to drive my big heavy SUV or trade and take DH's smaller car LOL!

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  • holtbolt
    holtbolt Member Posts: 625
    edited January 2009

    I am so glad to hear that Lisa...about the chemo.... for me it's less about hair and more a fear of nausea (of course my hair sucks anyway so that would make sense).  I can see your gorgeous hair from the picture.... I'm sorry you have to lose it.  Nausea will put me down and make me not want to continue... so I hope it's not too bad.  I had one node taken under my left arm.  The right no nodes taken as the sentinal (sp?) node was already gone from my last bout with bc in 6/07.  So, the right side is way better than the left at this point.... hopefully PT will help my left arm and my back.... continuing to be hopeful....

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  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited January 2009

    Hi all--sure wish our list wasn't getting so long, not that I don't want to meet you all, but this shouldn't happen to anyone, especially with young ones at home. I'm dreading my 2 older children going back to college this wkend-it's so great to have them home. My 14 year old is really going to miss them too (she cries every day, even though I tell her I'll be fine--last year DH had a stroke, which took months to recover from).

    I got achier throughout yesterday and couldn't sit at the computer, sorta flu-like after Neulasta. Damn shot better help! My ribs and back hurt, and I was sore under both arms.  Finally took a tylenol last night, which helped. A bit better today but feeling "foggy" brain (day 4 from 1st tx). Haven't taken anti nausea today, and seem fine.

    Brenda: I'll have to try to figure out how to put a picture in of me in my Gabor wig. Too bad you live on the other coast, or we could go out as the Gabor sisters.

    About arm motion, my roommate during 1st tx on 12/30 had mast. and AND on 10/23 (with my surgeon--coincidence!) and almost has range of motion back. I hate the numbness, and right now it feels worse than before chemo--maybe just because I've not done as much exercise.

    Martha-I'm a teacher too, and thanks for letting me know it might be doable. I'm starting with ACx4, then T every week for 8 weeks. I hope I can go back, but at this moment can't imagine driving down the freeway safely! I was driving pretty soon after surgery, but this chemo is another thing...I'd hoped to start next week, but right now I'm too foggy to plan.

    Good luck to everyone starting chemo, we'll get through this...

    kim

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  • principessa
    principessa Member Posts: 8
    edited January 2009

    hi all.  i am getting ready to start my chemo next thurs.  thought i would drop a line to introduce myself. 

    i'm 31 and wished that santa would bring me a cancer free card for christmas, but that didn't happen... so I start my chemo next week.  I had my port put in on tuesday, still sore, plus i got sick in the mean time, I'm up in the tundra that is MN, so everyone has a winter cough or sinus congestion, boooo!  please tell me that you don't even notice your port anymore!!! 

    just wanted to get a line in to say hi and send some love to you all- in the January Chemo group.

    aKiss

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  • lisalisa
    lisalisa Member Posts: 824
    edited January 2009

    hi Andrea,

     welcome!  sorry you had to join us.  i'm sorry i had to join us too Frown

    my port hurt going in and hurt for a few days.  then it became just annoying.  now, about 2 weeks later, i don't notice it at all! 

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  • jillyG
    jillyG Member Posts: 401
    edited January 2009

    Brenda, thanks for your reply.  I am going to get some Vitamin C and try to get rid of this cold...I've had it for several days so I am hoping it'll be gone by Monday :) 

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  • rsben70
    rsben70 Member Posts: 137
    edited January 2009

    This (about your port) is good to know I am getting mine on 1/12.  I am a little nervous, but everyone where i work said it was a piece of cake, I say anything is when it is NOT you.  Wanted to say Hi to January chemo group and thanks 

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  • holtbolt
    holtbolt Member Posts: 625
    edited January 2009

    Principessa... I just moved to Indiana From Minnesota.. Maple Grove.. where are you?  Sorry you had to join us but ... welcome!

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  • brendafromflorida
    brendafromflorida Member Posts: 90
    edited January 2009

    Kim,  which Gabor wig did you get?  I think the name of mine was Precedence.  I am really anxious to see what it looks like.   I have a friend who just finished her chemo from lymphoma so she is going to give me a couple wigs for some variety.  Not my color, but it may be fun to change it up once in a while.  

    Jilly, hope you kick your cold before Monday.  Stay warm, drink a lot of fluids and pump that C. 

    Welcome to our new members, even though we know none of you really want to be here. 

    Holtbolt and Renrel, when I told my youngest son (38) about my BC, he said a big SHIT first a DAMN, and then another four letter that I better not post here.   That pretty much said it all.  

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  • mimi07
    mimi07 Member Posts: 25
    edited January 2009

    I just got back from my first round of chemo.  I am happy to tell you that it went smoothly.  I didn't feel bad throughout the treatment and as of now I feel normal and good.  The nurse told me that I might start feeling nauseous this evening and tomorrow from the cytoxan, and Taxtotere effects don't come out until 3 days later and it will mainly be fatigue, bone and muscle pain.  I am going for a walk and eat dinner before the nausea hits me.

    But, one thing that freaked me out was that when the nurse inserted the needle into my port, a whole bunch of blood gushed out.  The nurse was liking it, but WOW, it's like hitting a well!  Got scared a little bit there, but I guess that's normal.

    How did yours go kt57 adn AZStacey?

    kt57 - Thank you for your advice about the anxiety and the neulasta shot.  I am looking to get the inspirational CDs. 

    Renrel - Thanks for your encouragement and advice on coping with anxiety.  I am feeling much better now that I got my first treatment done.  ( I might not be saying this tomorrow, though..) 

    And the port is feeling much better today.  It is day4 and the pain is almost gone and does not bother me that much anymore.  So I can tell you, and I was really scared of getting the port, it is not that bad.

    Lastly welcome new members!  We will all beat this together!  This forum is my life-line.  Mimi

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  • kt57
    kt57 Member Posts: 425
    edited January 2009

    Mimi 07 - glad to see you here.  Mine went well too.  No adverse reactions.  I feel a bit revved from the steroids.. not a bad thing I guess. 

    AZ Stacey08, hope you are doing well too.

    Jan 2 will soon be in our rearview mirror!   Here's hoping our road ahead is smooth.

    Welcome to the newcomers - amazing how many of them since my post last night.  We are from all over and yet we are all connected right here.   Thanks for that- my best to all of you.  

    Kathy

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  • ktym
    ktym Member Posts: 2,637
    edited January 2009

    Just got my oncotype score back, looks like I'll be joining this group.  The help and advice I've gotten from this forum makes that much easier to say.

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  • sweeeeetpam
    sweeeeetpam Member Posts: 115
    edited January 2009

    Somehow I just lost my long post!!!!!! CRAP!!! Sorry!!!Well Hi ladies I properly know a few of you from other areas, I did chemo Before surgery and my surgery was Monday.............with 21 nodes 3 were cancer soooo my surgeon says it looks like I will properly have to do chemo again so you can add me to list list too!!

    Not a list anyone really wants to be on. So far I have been ok it has only been 4 days looks like my drains have dryed up, could not get in till Monday what a pain, I have been able to sleep on my side and have only take about 4 pain meds...............Lucky maybe ................I have not cryed yet so I am sure I am into that soon. Going back to work in a week if I can I am a direcotr of a preschool and my boss is just awsome!!

         I need to go rest since this is the second time I have written this. I need to reread all of your comments my thoughts are will all of you!! Pamela 

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  • sweeeeetpam
    sweeeeetpam Member Posts: 115
    edited January 2009

    Hi Brenda we have about the same cancer going on, excpt I had chemo first just got done on Monday, reslt out of 21 nodes/ 3 were cancer, even thou my sentnal nodes were clear he took more..I really did not understand if you look on here very few had nodes removed???

                                     I had no recon, and have had hardly any pain, I plan to go back to work in two weeks we shall see, with chemo I did a/c nd had no side effects except hair.............and I drove around town letting it fly out the window.....................I run a preschool and all of my parents have been told, my owner is awesome with all of this!!

    How did your surgery go?? If you want to email me please do!! Thanks Pamela 

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  • BerkeleyKim
    BerkeleyKim Member Posts: 390
    edited January 2009

    Brenda: My Gabor is Suddenly Average (maybe average is the size-ha). I'm looking at it now and it's really not me now. I know I'll need to get used to the new me. My sister sent me a chemo scarf this week, and that's tough to look at too.

    Pamela--great attitude. Posts like yours keep me hoping and laughing. Good luck with the next step.

    Well, I'm going to try to stay out of bed and get some things done while I have some energy. My son's cooking dinner for us before he needs to drive back to school tomorrow. There are so many things on the "do not eat" list, but I'm determined to try his seafood stew!

    Hugs, Kim

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  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited January 2009

    Hey sweeeeetpam,Kmmd, principessa, Jilly G--You are added to the list.  Sorry you have to go through this, but you are on the right thread.    It has truly been a god send for me:  Breastcancer.org.  I mean, I have friends and family who care, but it just isn't quite the same.  I can't quite explain the fear I feel most of the time to my family.  They are so used to me being the "mom"-one who does "mom" stuff and then to suddenly have that change is very hard for them.  It is very hard for me, what am I saying?????Anyway, I know they care, but I read everyday the posts of so many of us who are fighting and surviving and living day to day and it is such a relief to be able to geton this post and just blab out my feelings and know others are probably shaking their head, and saying "yup, I know exactly what you mean......" 

    LisaLisa-glad you feel better.  Day 11---yes!

    Holtbolt--I has mast dec 8 and can just now raise my hand above my head.  I raise my arm high enough to shave!  Then I thought "am I going to need to day 14 after chemo??" I couldn't resist a chuckle.  I shaved anway-I see the PS who is going to put more saline into my tissue expander Jan7.  Then I guess I go for a oncotype genetic test and then next week chemo????

    B-Kim,  I am trying to figure out the best day to have tx , next day neulasta shot and then how many days to take off to recover.  Oncologist says thursday tx, friday neulasta shot-weekend recover-monday extra if I need it????? I teach high school and gotta go for the wig,I think, though I'd rather wear the turban.

    Lisalisa--I am flipping out about the hair thing as well, I envision myself breaking down into a major meltdown that day.

    Sweeetpam-my oncologist said I should be okay around kids I teach.  I teach high school special education students and they are very used to me telling them to go and wash their hands ...

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  • lisalisa
    lisalisa Member Posts: 824
    edited January 2009

    Jess - just fyi.  I was told NOT to shave during chemo as you don't want an infection if you nick yourself.  Or, you can use an electric razor.  I use the cheap pink daisy disposables so I'm not shaving for now.  It will all fall out soon enough, right?  and, lucky for me, my leg/arm hair is all light blonde Kiss

    I emailed my oncologist today and she got ahold of my plastic surgeon (his office is closed and i didn't want to call his cell!).  So, he called in an antibiotic for my belly/stitch opening.  I'll take keflex 4x a day.  He's going to see me on Monday am but says he is sure its NOT an infection. 

    I went wig shopping today.  Same problem that I had at UCLA.  They can't really fit me until my hair is gone.  There is too much of it and its too thick to do a fitting.  The wig shop woman was rather rude and suggested I need a new "style" as opposed to long and straight.  nice.  she also commented that my hair was multiple colors.  yes, it is.  i stopped highlighting it since it will all be falling out Cry   Not going back there again!

    what a day.  this hair thing is getting me down.  i will cut it by sunday.  monday at the latest.  we just have 3 things to go to on Sunday and i don't know if I'm up to just wearing a hat.  i hate this!

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  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited January 2009

    lisa--i was also told not to  shave unless it's an electric razor-which is what I used.  I could barely stand to raise my arm anyway to get under there! lol!

    yeah, the hair.  On top of worrying about how I am going to keep going to work, I just freak when I start on the hair. ack!!!

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  • brendafromflorida
    brendafromflorida Member Posts: 90
    edited January 2009

    Hi Pamela,  my surgery went extremely well.  I am a relatively fast healer so I really didn't have any issues.  I have had my fill of surgery in the last year and a half.  In July of 2007 I had a total hip replacement and then in Feb. of 2008 I had total knee.  We were amazed at how quickly I healed and was back at work from those two.  I had just gotten back out on the golf course and thought I was home free when this hit. 

    I had 2 nodes show up on my PET scan so they didn't even do the sentinel.  Just took them all.  Turned out to have 5 with cancer so good thing they took them.  The worse thing now is just the numbness.  I had my surgery on Tuesday, home  Wednesday and working on my computer from home on Thursday.  Haven't really missed a day of work since.   I am very lucky that I can work from home.  I am a Customer Service Director, but I have a Manager who handles all the day to day stuff so I can actually consult from here.  Everything else I do is computer related so it is very easy for me to complete everything from here.  Thank God.   I really can't deal with all the "Oh, Brenda, how are you doing?"  For a while after dx, it didn't take much to set me off with the tears.   Not sure I ever really let loose, but had a LOT of tears.  I know everyone was really concerned and wanted to encourage, but all I wanted to do was cry.  Over that now, almost. LOL

    Really glad to hear you didn't have many SE's.  I can only hope. 

    I had very little pain from the surgery.  My port was inserted exactly a month after the mast.  I had the port put in my left arm.  While it was uncomfortable for a week or two, now I don't even feel it. 

    Please let me know how you do.  

    Kim, I hope you start feeling better about the wig thing.  I'm trying to muster up the courage to get some sleep caps and maybe a couple more hats.  I don't think I can do the scarf thing. 

    Hugs everyone and welcome to all the new members of our group.  Sorry you have to be here with us, but glad you found us.  

    Hugs, Brenda     Going to try to get some rest.   Sleep is really hard to come by these nights and I haven't even started chemo yet.   ARGH!!!!!!!!! 

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