Cytoxan and Taxotere ?

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  • Gillkath
    Gillkath Member Posts: 149
    edited October 2007

    Hi Barb,

    Sorry about your hair!  I started losing mine after my first tx, just a couple days before my second tx.  I had cut it really, really short before it started falling out which I think made it a little easier.  But, I haven't shaved my head because I still have a little hair, although I may end up losing the rest.  I think I could probably do a "Donald Trump Comb-Over" as the hair on the top of my head is mostly gone!  Can't you just picture that -- my teenage daughters would be mortified!  In a nutshell, it really stinks to lose your hair!

    I will be doing hormone therapy after my chemo is finished because I am er+/pr+ and pre-menopausal -- I'm 46.

    Hi Harley --

    Sorry to hear about your hand.  You think that was from the Neulasta shot?  I hate that Neulasta stuff -- I'm hoping my onc will let me skip it after my next tx.  I have such extreme bone pain from it and it is almost unbearable.  I have had swelling in my hands and feet and my onc has put me on dieuretics for that.

    Laurie

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  • Harley44
    Harley44 Member Posts: 5,446
    edited October 2007

    Laurie,


    Yes, the hand swelling/lymphedema is from the Neulasta shot.  A few days after I got it, my arm was kind of sore.  It finally got better, but not totally back to normal.  Then last week, I slept on it wrong, and when I woke up, the hand was swollen.  Go figure!

    It will be 2 weeks til I can get to the physical therapy/LE center. 

    I hope nothing else happens to it before then.

    Hope you are doing ok.  The chemo nurse told me that it would help with the bone pain if you take Claritin every day for 3 days after your Neulasta shot.  Since I do this, the pain isn't too bad... I'm kind of achey, but it's not nearly as bad as the Neupogen shots were!  Oh, I've never had bone pain/back pain that bad ever in my life!

    Best wishes,

    Harley 

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  • Gillkath
    Gillkath Member Posts: 149
    edited October 2007

    Hi Harley,

    I totally forgot about the Claritin.  You did mention that to me previously and I just forgot about it -- I will definitely not forget that next time.  I guess that I take so many drugs around tx time that the Claritin slipped my mind.

    Hope you have a good day.

    Laurie

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  • Harley44
    Harley44 Member Posts: 5,446
    edited October 2007

    Laurie

    Yes, try the Claritin... regular Claritin, NOT Claritin D...

    I hope it works for you!

    Good Luck!

    HARLEY

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  • Gillkath
    Gillkath Member Posts: 149
    edited October 2007

    Hi Harley,

    Just thought I'd let you know that my oncology nurse told me that she asked the Neulasta representative recently about all the bone pain that her patients have been experiencing from the Neulasta.  He suggested the Claritin as well.  She was going to look into this a little bit further and let me know what she finds about the link between Claritin and Neulasta.

    Very interesting!

    Laurie

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  • Harley44
    Harley44 Member Posts: 5,446
    edited October 2007

    Laurie,

    Thanks.

    I don't know why it works, but not only a chemo nurse told me, but my onc also told me... at my last appt., he asked me if I was taking the Claritin...

    I know that I felt achey, and there was SOME lower back pain, but nothing like I had with Nupogen.  It was TERRIBLE!

    Let me know what you find out.

    Harley

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  • Barbeqrn
    Barbeqrn Member Posts: 200
    edited October 2007

    How come you guys all get Neulasta etc...after treament? I have never had that injection....My WBCs have gone as low as 1.3 but I haven't caught anything as of yet...



    Has anyone heard of the injection Susanne Sommers took for her breast cancer? I heard you can take it with chemo etc... Iscador is the name I think.



    Gilkath, I am 47 and ER+ as well. My onc said that the AI drugs were better than Tamoxofen, but you have to be post menopausal for sure...I think it targets the adrenal gland secretions more....I could be wrong about this part though! You made me laugh about the Donalde Trumph comb over! How are your daughters dealing with this?



    Barb















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  • Gillkath
    Gillkath Member Posts: 149
    edited October 2007

    Hi Harley,

    I will let you know what they tell me and I absolutely won't forget to take it this next treatment which isn't until October 17.  I just noticed how many posts you have made -- wow!  You must be posting to other discussions, too.  Any good ones that you can point me to?

    Laurie

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  • Harley44
    Harley44 Member Posts: 5,446
    edited October 2007

    Laurie,

    Well, I registered here on July 5th, 2007, and I see you only just registered on Sept. 4th, 2007, so you are a couple of months behind me...

    I have posted on the chemo... thread and on this help me through treatment, and the hormone treatment, and on the reconstruction category, and the lymphedema threads...  ALSO, the 'friendship' category for off-topic subjects, like posts about my cats...  but when I first started, I used the Just Diagnosed category, so I have been all over these boards, looking for support.  Oh, and I post on the CMF thread, too, because I thought I was going to get CMF, but my onc gave me the Cytoxan & Taxotere...

    You may not need all these, if you are not having reconstruction, or not having hormone treatment...  

    Once you have been here longer, you will also have many posts, too!

    Harley 

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  • Gillkath
    Gillkath Member Posts: 149
    edited October 2007

    Hi Harley,

    I am in the same situation as you sounds like.  I am having reconstruction -- I have a tissue expander in place right now.  My actual exchange for my implant will be after my chemo is done but probably in December.  I also will be doing hormone therapy afterwards, too.  I have looked for an er+/pr+ board but couldn't find one.  I never thought to look for a hormone therapy board.  I will check it out.  These boards are a fantastic resource for us -- I do wish that I had found them earlier when I was trying to decide over what type of reconstruction to do -- that was an agonizing process for me.  I actually contacted my plastic surgeon and got some names of women that had gotten each type of surgery and I called them.  My ps wouldn't recommend one surgery over another for me which was very frustrating.  

    Have a good day ---

    Laurie

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  • Gillkath
    Gillkath Member Posts: 149
    edited October 2007

    Hi Barb,

    I'm glad I made you laugh with the Donald Trump comb-over.  It is so very important to retain a good sense of humor throughout this whole process -- something that I have been able to do so far.  My daughters are doing very well with this.  They base their interpretation of my disease by how I handle my own life.  I have been very positive and open with them every step of the way.  They see that I'm not falling apart, so they aren't falling apart.  That's not to say that they haven't seen me being sad at times -- they have -- and they've seen me sick with chemo.  But I am an optomist and they have handled this whole process very well so far.  Thanks for asking about my daughters.

    I am premenopausal so I will be on some type of hormone therapy after chemo ends.  I think my er+/pr+ was 90 percent for each.  Very high.  I actually thought I wouldn't get my period on chemo -- not the case so far.  But I've only had two tx so maybe that happens soon?

    As far as the Neulasta goes, my onc likes to give it to her patients (especially when the insurance company agrees to pay for it).  My white cell count is higher now than it was before I even started chemo.  And it amazes me that treatments differ everywhere.  Around here, Neulasta is the standard after a round of chemo.  Do you feel really tired with the low white blood cell count? 

    Have a great day!

    Laurie

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  • Barbeqrn
    Barbeqrn Member Posts: 200
    edited October 2007

    Laurie,



    I never know when I hit the low WBC period, so I feel prett good most of the time. I hate the first 8 days in terms of "gastritis" feelings, but I work almost everyday and I have a 7 and4 yr old, so I can't slow down. I was expected to be "super woman" but everyone , so I couldn't let anyone down. I still do pretty intense aerobics 4 times a week and I was determined not to gain weight during chemo like some women do. I think the hair thing which just happened after session 5, really killed me but I know two women who have alopecia and will be in wigs forever, so its all relative.



    Did you test for BRBA...I read if that is positive many oncs recommend oophorectomy and the use of AIs. I got on the web site and read AIs are 17% better at lessening recurrance than Tam. Anyway, I have never been tested for that...

    My onc doesn't like to use Neulasta because he read a study that some women might develope tumors from the drug, mind you it was probably one 1 study.



    I continued with my period too until treatment 3 was over. My tumor was 80% estrogen and greater than 50% progesterone. I think that is why onc suggested ooph so he could use AIs.



    Do you feel wierd asking for anything to help with sleep? I asked once and he gave me 30 Ambiens with 0 refills and looked like he didn't need to write for this in the first place. I felt better after this site knowing alot of others areneeding things for sleep and nerves!



    I am glad your daughters are doing well, howold are they?



    Take care! Barb

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  • Gillkath
    Gillkath Member Posts: 149
    edited October 2007

    Hi Barb,

    I believe that my onc will discuss this all with me after my chemo is finished.  I did ask her once about ooph but she didn't really recommend that at the time.  Not sure why.  I'm sure we will discuss the options and no she hasn't mentioned the test to me either.  Did you have the ooph?  Where are you in your treatments?  What chemo regimen are you on?  I'm taking cytoxan/taxotere  -- Yuck!

    I did ask my onc for something to help me sleep, but she only really suggested taking tylenol pm or something.  I find that for at least one full week after chemo I don't sleep and that is very frustrating.  When you feel yucky like that, you just want to sleep.  Did the Ambiens help you? 

    My daughters are 16 and 12.  You have a 7 and a 4 year old.  You must be so tired -- I am so impressed with you that you have kept up with your aerobics.  I have been an avid runner over the years and most recently bought a treadmill so I could at least walk on it.  I have only done the treadmill once since my initial diagnosis in June.  Believe me, I get really grumpy without exercise.  That is definitely something I want to get back to. 

    Laurie

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  • Urbie
    Urbie Member Posts: 154
    edited October 2007

    Laurie - I see above that you are planning exchange surgery in December.  It seems that we are both on the TC - every three weeks and I was wondering when your last treatment is?  I have my last treatment on December 3 and will have to have my exchange surgery two and a half weeks later (before ps goes on vacation) and I was wondering if they will do surgery on me so close to chemo?  All of my medical expenses roll over the first of the year and I start all over with deductible and max out of pocket, so I would like to get as much done in this calender year as possible.  For some reason, the doctors don't seem to share my greif about this and seem to think that it is not a big deal to go into next year.  Funny how $4000 is a lot of money to me...  Just curious if you have talked to your doctor.   

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  • Harley44
    Harley44 Member Posts: 5,446
    edited October 2007

    Hi Laurie,

    I am having my reconstruction on Nov. 7th, and my ps will be using the Becker/Mentor implants, which are a permanent implant expander all in one, so I only need ONE surgery, and I think that is great!  I did the delayed reconstruction, because my ps does it that way, since he worries about infection... 

    I think they USED to have a ER+/PR+ thread, but now they just use the hormone treatment thread.  My onc will probably have me on Tamoxifen first, and then after a couple of years, I'll switch to an AI.  I am already postmenopausal, due to a condition called premature ovarian failure.  I am 44 y.o., but was dx'd at 35 with the POF...  I worry about what I'll do when I have the HOT FLASHES and NIGHT SWEATS... 

    That is odd that your ps wouldn't recommend a particular type of reconstruction.  My onc wouldn't recommend chemo or no chemo to me, and that is why I have so many posts here, because I kept posting to see what the others thought.  I ended up getting the chemo, because I need to do everything I can to make sure that bc doesn't recur...  I was right in the middle with the Oncotype test, and really wanted to avoid chemo, but it just felt like the right thing to do.

    It is good to hear that your daughters are ok with your bc... I think alot of it is in how you are handling it.  I couldn't have children because of the premature menopause...

    Everyone, my friends and neighbors and family, all think I am going through this whole bc experience very easily, without many se's.  I do have some se's from the txs, but nothing too bad.  I am exercising about 4 days a week, walking and running.  I wanted to do a breast cancer walk too, but I think I missed it...  maybe next year...

    It has been amazing to me, how much GOD is helping me through all this bc experience.  Every time I need something, GOD provides it. 

    Best wishes,

    Harley

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  • Harley44
    Harley44 Member Posts: 5,446
    edited October 2007

    Barb,

    Yes, my onc gives the Neulasta shot the day after each tx.  I didn't get it after my 1st tx, but a week later, I had bloodwork, and my white blood count was WAY DOWN!, so they gave me Nupogen shots and they were HORRIBLE!  I had to get FOUR shots, one every day, and I had such HORRIBLE bone pain, lower back pain from it that I said I would NEVER do it again!!  Luckily, my onc agreed.

    My last tx is Tuesday, Oct. 9th...  I will be SO glad to be finished with chemo!!

    Best wishes,

    Harley

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  • Gillkath
    Gillkath Member Posts: 149
    edited October 2007

    Hi Urbie ....

    I so understand what you mean about wanting to get your surgery scheduled in December.  I just got my bill from my first tx and it looks like I will owe about $1500 for my portion.  I almost choked -- the taxtotere was about $5,000.00.  I can't wait until I get the bill for the Neulasta ....  My ps told me that I will schedule my exchange surgery for December -- my last tx is November 8.  She wanted a few weeks for the chemo to run its course through my system and for me to be stronger.   So, you have had a tissue expander in place, too?  How have you found that to be?

    I  have had two tx -- my next is on Oct. 17 which I am dreading.  I think my onc is going to think about changing things a litle bit for my next tx because of the troubles I had with this last one.  We'll see.  I just can't wait to be finished with all of this.

    I find myself doubting that they screened my remaining breast well enough and may call my breast surgeon.  I found out that the tumor I had had been there for years, despite having had routine mammograms and exams.  They never told me that I have dense breasts, either.  So, I feel a little uneasy about this.  Have any of you guys had this same thought?

    Laurie

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  • Harley44
    Harley44 Member Posts: 5,446
    edited October 2007

    Laurie,

    I have the exact same thoughts as you, and I had BOTH breasts removed!!  My surgeon said that I may still have breast tissue left, as he took out as much as he could, but I still have fatty tissue left, because I'm thin, and he wanted to save as much as he could, for my reconstruction. 

    I want to get screened for whatever is left.  I also had dense breasts, and was never told about the higher risk for bc.  Also the mammograms NEVER found mine, until I felt it myself, and got a DIAGNOSTIC mammogram which found it... The u/s also showed it.  I am SO worried that there is something still there, and my ps will put the implants in but we'll never know...  My tumor had been there for years also. 

    I keep feeling my chest, and I swear I think there are lumps everywhere!  The last time I mentioned it to my surgeon, he felt the breast... what breast, the chest, and he laughed and said it was just my ribs....  not funny...

    Good luck with your next tx on Oct. 17th!  I'll be thinking of you, and praying that it goes easily, with minimum se's...

    Harley 

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  • Urbie
    Urbie Member Posts: 154
    edited October 2007

    Hi Laurie - I too decided to have both breasts removed and reconstruction with tissue expanders on both sides.  There was never any doubt about the mastectomy for me (personal family history with lumpectomy that didn't turn out well) and my decision to go bilateral was two-fold; symetrical match in reconstruciton (I'm going bigger than I was Wink) and a woman who I became friends with after diagnosis, who had been thru this three years ago, told me that she lives in fear of it returning in her remaining breast.  I just figured that I only wanted to do this once and had them both removed.  I have not once regretted the decision.  I did however not like to see my pathology report listing "unwanted left breast" on the sheet!  I don't know what the statistics are, but I don't think that recurrence in the other breast is all that common.  I am not sure because I really decided to go bilateral pretty quickly.  For me it was peace of mind.

    AND - I am so happy to report that I have had a really good day!  I walked my usual 3 miles this morning and took my kids on a picnic lunch and then took them to decorate pumpkins at Michael's.  My kids were SO happy to have mommy back for the day (two girls 5 & 8).  I was getting so depressed yesterday thinking that I was going to feel crappy for 12 weeks.  Today was six days after tx-1 for me so there is hope that the next two weeks will be good!  I hope that the next treatments give me only six days of yuck too.  Next time though I will take stomach meds before the treatment to avoid this painful tummy.   Hopfully I can stay up late to see the Packers vs. Bears (longtime Packer fan - grew up in Green Bay).  

    Have a wonderful night all!

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  • karen1
    karen1 Member Posts: 23
    edited October 2007

    Harley,

    I have noticed your posts and we have the same oncotype score and are doing TC.  I have done 2 and have 2 more.  I don't think I can do anymore,  this one has been so hard.  I have had a non stop period since the first tx and lots of fatigue and stomach cramps/constipation.  my onc is very vague about the benefit of doing this treatment.  My oncotype was 22 with a 14% chance of recurrance.  no nodes 2.2 cm IDC.  What has your onc told you about TC treatments benefits (percentage)with a intermiediate risk on the oncotype test?  Thanks,  Karen

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  • Harley44
    Harley44 Member Posts: 5,446
    edited October 2007

    Karen,

    Sorry you are having so much trouble with the TC tx!  I am postmenopausal, due to a condition I have, and was dx'd at 35 with Premature Ovarian Failure, so I couldn't have children.  
     

    My Oncotype score was 28...  the onc told me that with the hormone treatment, I still had an 18 % chance of recurrence, and with chemo, and additional 4%, or 14 % chance of recurrence.  I really don't think it's that high... but, I felt I must get the chemo, to be sure I have done everything I can to prevent recurrence.

    Could you ask your onc to either change your treatment slightly, to a different drug, or maybe to add some other pre-med drugs to help with the se's?  Maybe he/she could suggest something else for you to take to help with your se's.  I don't know if you can take Pamprin or something that may help with the cramps.  I have read that ginger helps with cramps... maybe gingerale could help some?? 


    You are HALFWAY THROUGH!!  

    I'll be thinking of you and praying that your next two txs go well!  Please post and let me know what happens...  you can even pm me if you like...  I will try to help in any way I can...  Even just to listen, if that is what you need.

    Hang in there! 

    Harley

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  • emg326
    emg326 Member Posts: 102
    edited October 2007

    Karen,

    I just saw your post. I had an extra long period after my first treatment. Onc. said anything can happen with regards to your period while on chemo. Now, I haven't had one since then (over 30 days which is really long for me). I have tx #3 tomorrow, and my last one will be at the end of the month. I try to ward of the constipation by starting stool softeners the day before. I also drink lots of smoothies with fiber added. It seems to help. I know the fatigue is cumulative, and I plan on being horizontal most of the week. I've read that for women like us, TC has been shown to have greater benefits than AC. My onc. feels it's a really good regimen for my situation. My oncotype was 16 but tumor grade 3, no nodes, 1.9 cm. IDC. I chose to do it because of the grade. We'll get through this. Good luck!

    Eve

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  • Barbeqrn
    Barbeqrn Member Posts: 200
    edited October 2007

    Hi all..

    Harley, I will be thinking of you on the 9th, your last tx!!!!! Yahoo!!!!!

    Laurie, I am getting TC treatments as well,and I hated all 5 of them! Not sure why my onc ordered 6, I think he was being super cautious and wanted to use AC and T but I refused the Adriamycin. My tumor was less than a cm and grade1 but I still had one node out 11 which was positive. I am scheduled for #6 on the 11th but onc is going to have to change it up a little because I had a lot of joint pain this time. My hands hurt and I thought my left knee was coming off. (It could have been the lunges at the gym too!)

    Urbie, I see you have little ones too...Its hard to be perky after chemo! I usually have it on Thursday and then am back at work on Monday, with Saturday and Sunday being my really bad days and the rest of the week just feeling a little hangoverish...(is that a word!!!!!?????) I HATE going through this, as I know all of you do too. I can't help but wonder, why me, but , I know I just have to get over that thought. I may still be in shock since the diagnosis in April.

    All in all, I think the worse thing by far, of course, is the hair loss.I feel vain for saying that too....but it has been really mentally hard for me...I know, a small price to pay if this all works....



    Barb

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  • Gillkath
    Gillkath Member Posts: 149
    edited October 2007

    Hi Harley,

    Just thinking about you today and wanted you to know how excited I am for you that tomorrow is your last chemo.  Let us know how everything went -- you must be so happy!  I hope you still keep in touch with us September chemo gals ....

    Laurie

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  • Harley44
    Harley44 Member Posts: 5,446
    edited October 2007

    Laurie,

    Thanks!

    I will definitely keep in touch after my last tx! 

    I may have to stay off the computer for a few days, since I have a slight lymphedema issue with swelling in my left hand...

    I'll be thinking about you on Oct 17th... we'll have to compare notes about our reconstruction...

    Hugs,

    Harley

    Urbie,


    Glad to see that your 1st tx went well!  I think if you keep exercising, it will help to keep any se's to a minimum... 


    Good Luck!

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  • karen1
    karen1 Member Posts: 23
    edited October 2007

    Eve, Harley,  I hope all goes well with your treatments tomorrow.  Harley I think it is your last one.  Congrads.  I am feeling a little better today, still wondering how much this is helping the percentages.  I am such a number person that it is driving me nuts.  Eve I'm glad your period ended, this one is 11 days and counting, hopefully it will stop soon and never come back,  I am 50 and would like them to be over.  The hair loss has been devastating, my PA told me that with TC I may not lose it,  well I did.  It was fallling out all over the place.  My first grandbabies (twins) were born a little early on the 30th Sept and in the middle of the night I was in the waiting room thinking this is the best and the worst time of my life while my grandchildren are being born and my hair is falling out all over the waiting room furniture.  I had it buzzed a day or two later.  Cannot get use to a wig.  I have tried them in the house,  they feel unnatural, oh well I will have to put one on by tomorrow to go out.  I had a grade 2 to 3 also, and it was 2.2 cm so the onc suggested TC.  It is such a grey zone that I don't think they can give numbers as much as if it is high risk.  Both of you take care after your tx.  Karen

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  • Harley44
    Harley44 Member Posts: 5,446
    edited October 2007

    Karen,

    Thanks!  Yes, it's my LAST TX!! 

    Some friends want to go out tomorrow night for dinner to celebrate!

    I am glad that you are feeling better.  You are HALFWAY THROUGH!!!  That is also a very good feeling... 

    My onc told me that I had a 4% benefit from getting chemo, so at first I told him NO, but after thinking about it, I changed my mind, because

    a.  I don't believe my risk of recurrence is really that high (18%, with hormone treatment)

    b.  I don't think the benefit of chemo is only 4%

    c.  I want to do everything I can to prevent recurrence... I only have ONE life!

    I think I will have a glass of champagne at one of my celebration parties!  My dh wants to invite some of the people who helped me through all this to dinner, but he wants to wait til Nov. 2nd...  Then I will be just getting ready for my reconstruction surgery on Nov. 7th.

    Good Luck!  I'm praying for you, that the next 2 txs go easier for you.

    Hugs,

    Harley

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  • Barbeqrn
    Barbeqrn Member Posts: 200
    edited October 2007

    Harley,



    Good luck to you today and I am sooooooo HAPPY for you. That champagne sounds great. I hope your arm does better. I agree with you...I think chemo helps more than 4% !



    Karen, I can relate to the hair thing too...I don't even let my husband see me without a hat on and I know that sounds crazy, I just can't do it! Congratulations on your grandbabies!



    Barb

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  • Harley44
    Harley44 Member Posts: 5,446
    edited October 2007

    Barb,

    Thanks!  I am kind of tired after that last tx!!  Man!  They couldn't find a vein for the blood... then they couldn't find a vein for the IV, they stuck me FOUR times!  I was just about crying!  It hurt so bad!

    But, the last time did the trick!  The nurse ran the drip very slowly, so we could keep an eye on things, and be sure I didn't have any problems.

    I didn't let my dh see me without my hair at first, but I finaly just said, what the heck?  I will be in the bathroom, and if I forget the wig, and have to run into the bedroom to get it, he'll see it anyway.  So, he sees it, and he rubs my head, and sometimes he kisses it.  He thinks it is growing, but NO it's not...  I still look like SLUGGO!

    Well, better go now.  I have to get a shower...  We are going out to dinner to celebrate my LAST TX!  We are going with some friends from the coffee shop, and we'll get a bottle of champagne, so I can do a toast to me, and all the friends who helped us...


    The official dinner isn't until November 2nd, I think, but I just HAD to do something tonight!!

    Hugs,

    Harley 

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  • Gillkath
    Gillkath Member Posts: 149
    edited October 2007

    Hi Harley,

    Three cheers to you!  I am so proud of you that you made it through all this yucky chemo and it is now behind you.  And you have your next surgery to look forward to.  I wonder if the surgery will feel easier than chemo?  Good luck to you.  Keep us posted!

    Laurie

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