Taxotere/Cytoxan starting February 2012.

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  • Myleftboob
    Myleftboob Member Posts: 1,469
    edited April 2012

    Hi Britt

    Glad you found us.  I find the Clariton D works too.  Didn't have it 1st TX but took it for the next 2 and will be taking it for #4, the final one TG!! (At least I hope so) It works for me and beats living on percocet which I did the first TX..  We are very close timeline wise although I had a MX vs BMX on December 14.  I do tend to go up about 5 pounds after TX but I attribute this to the steroids.  I'm on a water pill (Hydroclorothiazide) to control BP so this helps with water retention. I'm a little paranoid about raw foods so haven't been eating salad at all.  I'm dreaming of a big huge greek salad, feta and all!!! LOL!

    I think we all are very vain and being bald is not fun for anyone.  Although I hate wishing my life away I cannot wait for a year or so down the road to have a decent looking lid.  My hair was always my thing since I had hair. Its all so surreal.

    Did you do recon at the same time? 

  • Brittle
    Brittle Member Posts: 10
    edited April 2012

    Reconstruction was a big debate here. My husband does DIEP flaps for a living. I'm pretty biased thinking recon with autologous tissue should be the standard of care for suitable candidates... especially those of us who are young and looking at 30-40+ years with implants. That said, I didn't have enough belly tissue to re-create two breasts, and didn't want to fracture my cancer care to find someone in another city who could use my butt (S-GAP recon). So, here I am... wife of Mr. DIEP Flap... with bilateral tissue expanders. I'm switching out for silicone implants in June. On this side of cancer, and now past my own surgery, my previous biases are gone. Even NO reconstruction makes sense to me now. But delayed recon with autologous tissue can happen any time. I may be re-visiting that decision in the next 5 to 10 years.

  • Brittle
    Brittle Member Posts: 10
    edited April 2012

    And darling husband found the answer to my weight gain and an explanation why Lasix isn't working. Apparently only exercise (increse lymph flow and sweating it out) will take off the pounds because the fluid isn't actually intravascular. Fabulous. How I would LOVE to go sweat it out in hot yoga... but I can only imagine the pathogen count in that sweltering studio.

     Grrrr.

  • Myleftboob
    Myleftboob Member Posts: 1,469
    edited April 2012

    Brittle

    Wife of Mr. DIEP Flap and none to be had.  I haven't had recon yet because of the 2 tumors that were seen as well as the large extent of calcifications which turned out to be DCIS.  My surgeon thought it best to wait for the full pathology and then plan for TX which was fine with me.  As it turned out no nodal involvment thankfully and fab margins.  Still have a 2nd consult with the RO, she was to present my case to the tumor board.  I'm still hopefull I don't need rads but it's not completely ruled out yet.

    Originally looking at DIEP, I know am leaning towards a TE, implant and rejuvinating lift to the right.  I just kind of want the path of least resistance surgically you know?

    I can only imagine the path count in a hot yoga studio, yuck!!  But hubby is right, nothing beats plain old fashioned excercise.  I was surprised hearing from my MO that weight gain was an SE of chemo not knowing anyone personally that had bee though it.  I thought for sure it would be weight loss!!  LOL!

  • woodburns
    woodburns Member Posts: 56
    edited April 2012

    Bonnie - Just wanted to say I am glad to read your mother is at your house.  I know this will give you much piece of mind having her there.  It is amazing how far they have come with open heart surgery.  

    A_Fighter - Glad your 3rd treatment went will well.  I too had thought my blood count was good because no one called me the next day after the blood work.  So I called them the 2nd day after and was told I had gone from 4000 to 300.  I will definatley call them the next day from now on.

    Britt - Welcome.  This site was a God send to me.  From what I have read here, I believe the SE's are accumlative too.  

    Tomorrow I have 2nd tx.  Not nervous about it this time.  I am nervous about the 3rd day side effects.  

    My head hair started coming out on Friday.  Thanks for the tip about the lint brush.  It has really helped with the shedding.  I have started sleeping with a night cap to keep it off my pillow.  I am surprised that it has not really bothered me.  I have severval bald spots now.  I go all natural at home, I have 3 wigs, and one velcro straight (to wear a ponytail) to go under a hat and one curly short to go under a hat, and 4 scarves for a change.  Will donate them to the American Cancer Society once my hair grows back.  Here is hoping for thicker and curlier.  I'm taking Claritan and using artificial tears for dry eyes.  Other than that, these last 2 weeks has been pretty much uneventful.  Here's hoping #2 will be the same.

  • gobucks
    gobucks Member Posts: 18
    edited April 2012

    Hey ladies. Sorry I haven't posted in awhile. I've been just like you all dealing with treatment and family. I've been following everyone, but just haven't had a chance to post. It seems once the kids go to bed, I'm exhausted and go with them.

    I have a question for you all. I have one more treatment left. I'm handling SEs pretty good. Well actually, I'm dealing with crap, but I'm learning ways to deal with it and manage.

    Here is my issue. I am getting my worst day on day 6! That is when I get the horrific bone pain and and migraine. I am prone to migraines. I'm on meds and my docs are working their best to manage it. But how do I manage the bone pain so late. I take the claritin for several days and I get the pain, but it's mananageable. My onc is surprised that I get it so late. What do I do, take the Claritin for a week? Seriously, I don't know, but I need help. I know I only have 1 left to go, but I need help managing that pain.

    Good news is that neulasta is doing its job and keeping me out of the hospital. For some reason, the chemo really attacks my WBC.



    Also, if you ladies have any questions about tamoxifen and SEs, I can help. I was on it for 4 years until I recurred......which is not normal. I also belong to the YSC support group and have been there since my 1st dx, and read about hundreds of women over the years and how they liked it or didn't.



  • onvacation
    onvacation Member Posts: 1,344
    edited April 2012

    So why not try taking the clariton a bit longer?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2012

    I take the Claritan starting the day of my TX and continue until exactly 8 days later.  I cant say I am not having bone pain but it seems to be bareable.  

    (((HUGS))) 

  • A_FIGHTER
    A_FIGHTER Member Posts: 109
    edited April 2012

    Good Morning Ladies,

    lmlola59: Yes, insurance covered the cost of the CYP2D6 Test.

    Brittle: Welcome! You found a GREAT group of women!

    luckyjnjmom: I TOTALLY agree with you, KEEP MOVING!!

    woodburns: Thank you! That's great you plan on donating to the American Cancer Society. Ahh, thicker & curlier hair. I've heard this happens to some. Yesterday, I actually met a woman who was in treatment 2 years ago. Jason & I were at the Boat Storage waiting for our boat to be brought out and placed in the water. I was just standing there waiting and I noticed another woman standing some distance away. She then started walking and walked by and on her return she asked if I was in treatment. Once I said yes the first thing she told me, as she stroked her hair, was that it came back curly. She had super straight hair.

    It's One Week past post-treatment #3...My mouth is still a little off...no metallic taste though and no sores...I guess I would say lack of taste...fingernail beds still a little sore too... 

    Gorgeous Day in South Florida Cool,

    XOXO,

    Bonnie

    Wherever you go, no matter what the weather, always bring your own sunshine ~ Anthony J. D'Angelo   

  • Kim48
    Kim48 Member Posts: 73
    edited April 2012

    Hi all,



    Hope all is well. Slowly beginning to improve from last treatment last Wed. I am getting my port out on Wed. I still have no energy today and some bone pain.



    Gobucks, i take Claritan for bad allergies all spring and the doctor said its fine. I would keep taking it and I also find that Advil works best. I can't take it this time because of getting port out on Wed. I miss it. If it is that terrible, maybe ask for pain killers for the worst days. my worst day was Saturday and since I can't take anything with blood thinners, I took one of my pain pills from surgery so that I could sleep. Also, what is YSC support group. How did you feel on Tomoxifen?



    I'm hoping to do 2-3 years.

    Tomoxifen followed by 2-3 years AI's. I'm worried about 5+ years of just AI's. Apparently my blood work says I'm postmenopausal even though I didn't know I went through it. I'm 48 and didn't expect that. I was on the pill.



    Funny story of the day, I'm going back to my first grade class next Monday. I'm going half days for a week and building up. I am sooo excited, but I guess nervous. I haven't been to school since before my surgery in Dec. so, instead of the normal dream that I went to school in my pajamas, I dreamed that I went to school and forgot my wig. I was bald! :). Guess the kids would be a bit surprised if I did that!



    Welcome to those who have joined us. This group has been so helpful. Great women here. Have a nice day all.



    And, thanks to those who are sharing such great articles, info!



    Kim :)

  • woodburns
    woodburns Member Posts: 56
    edited April 2012

    All most finished with the 2nd treatment.  So far no reaction.  Had good news.  My count went from 300 to 13,400.  That was without the shot and no antibiotics.  My doc said that my bone marrow must really be good.  I told her that it might well be, but I credit all the prayers that have been going up for me.  She said she had a chapter in her book on faith and prayer.  She wrote the book "Seeds".  I just love my doctor.

  • NikkEliz
    NikkEliz Member Posts: 38
    edited April 2012

    gobucks: I had really bad bone pain my frist 2 treatments that started out not so bad but there day 4 and by day 6 was AWFUL. The worst of it was day 5-6 through day 8 I'd say. For my third treatment, the doctor gave me a perscription for a medicatin that is an anti-inflamatory (like a persccription level advil is how she described it), to take the day before the pain usually starts (so day 3) and until the pain usually stops (so day 8ish). I had NO pain! It was awesoe. I had been taking tylenol 3 for the pain and still had a bottle incase, but didn't even have to take one. I can find out the name of the perscription for you when I get home tonight if you want to ask about it.

    Done blood work for my last treatment tomorrow! WOOT! So exccited for it to be done! But then nervous for radiation and tamoxefin a bit. heh. Have my first planning type appointment with the RO a couple hours after my chemo finishes tomorrow, so then I'll know more what I'm in for. Which is good, cause I'm definitely a planner and that's hard to do without all the info and the timeline of things, so it's been driving me a bit nuts. haha 

  • Myleftboob
    Myleftboob Member Posts: 1,469
    edited April 2012

    NikkiEliz

    Yay for your last TX tomorrow!  Wow!  I just had 3/4 last Friday and can't wait for 3 weeks time!! This is my tired day and I was just thinking "one more time after this". 

  • silviazara
    silviazara Member Posts: 111
    edited April 2012

    Kim - congrats on your chemo finished and on returning back to work!

    Nikki - good luck tomorrow.

    My last treatment is on Thursday. Of course I am nervous. I know the high fever will most probably start the next day together with nausea, no taste, burnt - like feeling of the tongue, no energy and etc ... just like all of your feelings described here. This forum gives me so much strength to move along with all this crap. My family and friends they try to understand, but nobody understands like the people going through the same thing.

    I am so happy I have you here.

  • silviazara
    silviazara Member Posts: 111
    edited April 2012
    gobucks - I was using Tamoxifen for two years and cancer returned. Do you know what will be your hormonal treatment this time? My onco wants me to do Arimidex together with monthly shots of Lupron (cause I am not post menopausal)... all this for about 1-2 years. Then go back to Tamoxifen or Evista or Fareston. Great, how I am supposed to make such decision? I guess I should seek a second opinion on this.
  • DonnaDS
    DonnaDS Member Posts: 32
    edited April 2012

    My last T/C tomorrow, finally.  These last two weeks have really dragged by, I just want to be done. Met with MO today and got set up with RO and got my rx for Tamoxifen.  I almost feel guilty saying that each tx for me has had less SE than the one before.  I hope that continues for this last one.  Thats not to say that this has not been a hard journey.  I am so over being bald.   MO says I should have some hair by July.  I will be thinking of all of you tomorrow from "the chair". 

  • lmlola59
    lmlola59 Member Posts: 146
    edited April 2012

    Hi all, 

    NikkiEliz good luck tomorrow last one what a great feeling that must be

    Silviazara wishing you the best on Thursday hope it goes smoother then the last ones and of course it is the last for you so hopefully that will help

     Welcome Brittle hope we can all be of some help to you through this

    Had my halfway appointment today and the WBC were over the top (MOs word) at 28.7 or believe as seem read it it would be 28,700.So next plan is to use the shot that we get for 3 days instead can't remember the name .Hoping that my insurance will let me get it at the pharmacy and give to myself.Don't feel like going three days in a row it is 30 minutes away and will add up.But at least I will no longer need to go for the 1/2 way appointment she is happy that I will do well with this.

    Hate that it is a crap shoot of what kind of hair you will get back. I liked that mine was a bit wavy and could either go curly or because it was thin I could very easily dry it straight.On another post firstcall said he had a Chemo  patient that one side came in curly and the other was straight.Really?What are you suppose to do with that? I guess that after not having it we are just suppose to be thankful that it is back regardless,but I want my hair back not something that I have to figure out how to deal with all over again.

    Oh well enough of that have a great day all

  • onvacation
    onvacation Member Posts: 1,344
    edited April 2012

    WOOHOO to the last treatment Donna!

  • Gayle56
    Gayle56 Member Posts: 277
    edited April 2012

    Kim48  - You must be so happy to be going back to work.  I am sure your students have missed you. Funny thing, none of mine have ever asked why I wear scarves on my head all the time.

     Nikk - Great for being on your last treatment.

    Donna   Glad you are on your last treatment.  I hope your MO is right about the hair.  I actually think it has started to grow a little in the past week.

    Silvia - I have to say #4 held on longer than I liked.  Tomorrow will be 2 weeks and I am still very tired.  I also picked up some bug last week so that isn't helping matters.  I still am not that interested in food, and I have a lot of heartburn.  I know it could be way worse.  I am just getting tired of not feeling like myself.

    Gayle

  • gobucks
    gobucks Member Posts: 18
    edited April 2012

    I can definitely try taking claritan longer. I guess since I don't have bad allergies I wasn't sure of long time usage, so I was only taking it as long as the nurses and onc told me to and I took it a day longer JUST to see if it could help me more.



    Kim- The YSC group that I belong to is the Young Survival Coalition. They are a great support also. Boards are not as active as this one right now because they are going through a chage, but it's still great and they have lots of support groups that meet all over the country.



    Kim and Silvia - tamoxifen for me was quite interesting. I had some of the normal side effects like hot flashes and night sweats, and that went away sometime around 9 months to a year. To be honest, a good friend and other family members helped me with that. They were all going through menopause and told me how eating late, drinking to much caffeine or alcohol would increase it and as soon as I watched those items, it dropped drastically. And I wasn't shoving down sweets and alcohol before. I just had to really limit it.

    For my other side effects, I had weight loss, migraines, and ovarian cysts. Weight loss I just had to manage my diet since I'm on the scrawny side. Migraine......well that shit just sucked and I'm prone to them. Any meds that say risk of headache, I have to be careful. Now, the cysts, that's just good ole tamoxifen. Some get it, most don't.

    From my research, my support groups, and my team of doctors, most women pop that pill everyday like its a sugar pill. Their only complaints are hot flashes and a little weight gain......that's it!



    Silvia, I will not be taken tamoxifen since it failed me. Since I'm done having children, my team has suggested that I have my ovaries removed and then go on an AI.



    So glad I found you girls. Sorry again that I've been out. I've been here, just reading and keeping up.



    Muah

    Krista

  • JoanQuilts
    JoanQuilts Member Posts: 633
    edited April 2012

    Treatment # 4 today!  Wish me luck and a continuance of my mild SEs! 

    Today would have been my last treatment, but I am opting for two additional treatments due to my uncertain nodal status.

    Have a great day everyone!

     

  • Brittle
    Brittle Member Posts: 10
    edited April 2012

    "Opting for two additional treatments." That there is some bravery that will get me through the day!

     What a wonderful thing to scroll through these pages with my coffee (that I cannot taste). I finally feel more myself. It takes me a full week for my energy to return. But I'm not expecting to taste anything until three weeks after Round #4. Looking forward to that Memorial Day burger.

     The CLARITIN worked so well this Round, and because it's Spring, I'm going to keep taking it until the end. For REFLUX, I take Protonix and Pepcid every single day. The heartburn we're having isn't "reflux" so much as esophagitis. It's better to have something on board all of the time. TUMS won't touch what I've got.

    DONNA, I feel the same way. Time has all but stopped. Nothing on the calendar means anything except April 13th: THE LAST ROUND.  And then, it's not really over, is it?

     xoxo,

    Britt

  • A_FIGHTER
    A_FIGHTER Member Posts: 109
    edited April 2012

    Good Morning Ladies, 

    DonnaDS & NikkieEliz: Congrats, Wahoo, last one! Thinking of you today!

    JoanQuilts: Two More left, you will be over the half-way point!  

    woodburns: Yippee, half-way done!

    Interesting Article I read this morning: www.hopkinsbreastcenter.org/artemis/201204/11.html 

    XOXO,

    Bonnie 

    All the adversity I've had in my life , all my troubles and obstacles, have strengthened me...you may not realize it when it happens, but a kick in the teeth may be the best thing in the world for you ~ Walt Disney  

     

  • onvacation
    onvacation Member Posts: 1,344
    edited April 2012

    Good luck today Joan - I am doing 6 treatments also. 

  • silviazara
    silviazara Member Posts: 111
    edited April 2012

    Brittle - you made me laugh with sipping the coffee you cannot taste.. oh how accurate... I am doing the same thing the days after treatment I drink it even tough it's tasteless. For me the taste always came back less or more fully after 10 days, and I hope after last treatment it will be the same.

    Funny thing, we are leaving for Las Vegas not even a week after the last treatment - I guess I won't spend much on food.. looking at the bright side.

    No, nothing is over after last treatment, but we need some milestones and little achievements, don't we??

    Krista - Tamoxifen was almost the same for me. Nothing really that bad other than night sweats and cysts. Now I am on Lupron and the hot flashes are so much worse!!! Tamoxifen apparently failed me as well - but other than AI there is not much else to do. And I don't want to lose my ovaries yet. that's why AI with ovarian suppression (Lupron)

    Joan - good luck today!

  • JoanQuilts
    JoanQuilts Member Posts: 633
    edited April 2012

    Coffee, coffee, coffee - after my first treatment I didn't feel much like drinking coffee (to which I am addicted).  By day 7 after treatment, I found that I was still draggy and realized that I was slowly undergoing coffee withdrawal.  In my subsequent treatments, whether or not I can taste it, I drink it religiously.  No need to add an unnecessary SE to my repertoire!

  • onvacation
    onvacation Member Posts: 1,344
    edited April 2012

    I am still drinking coffee, but the first few days I really couldn't taste it, but wanted the caffiene!  Actually tasted pretty good this morning!

  • JoanQuilts
    JoanQuilts Member Posts: 633
    edited April 2012

    Coffee is a gift from God!

  • Myleftboob
    Myleftboob Member Posts: 1,469
    edited April 2012

    I agree!  Wouldn't give up my 2 morning brews even if it tasted like crap!

  • Ulightup
    Ulightup Member Posts: 57
    edited April 2012

    Joanquilts and on vacation-- I am also doing six cycles of tc. Since mine is a cancer recurrence we opted not to remove the lymph nodes in order to decrease risk of lymphedema . Instead we decided to do six cycles of TC and radiation to breast and Axilla. Will you girls also be receiving radiation?

    I finished my 3 rd cycle last Wednesday and despite having earlier onset of symptoms (fatigue, pain, aches, headache, tummy issues) I seem to be recovering faster than the 2 nd round. When I'm in the midst of my awful symptoms, I wonder how the heck can I go though 3 more rounds. I guess I'll need to keep in touch here for support n motivation.

    Didn't think about coffee withdrawals... Humm I' ll try sipping coffee even if it tase like metal. Maybe that's causing my headaches .

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