May 2010 Chemo

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  • lorrhaw
    lorrhaw Member Posts: 751
    edited May 2010

    njbhwgirl - I am very lucky to have a neighbor who owns a wig shop in Michigan and she has worked with chemo patients for 30+ years.  She spent a lot of time we me educating me about different types of wigs.  The synthetic wigs are easier to take care of and MUCH cheaper.  She introduced me to a type called mono-filament which is made differently and is more comfortable and looks more natural than the standard wig.  It has to do with how then wig is sewn on the inside and gives the illusion of a normal scalp when the wig is styled in different directions.  Wherever you go ask them about mono-filaments because I have tried on some that weren't made that way and they were alot less comfortable.  She had 3 different styles shipped to us in Vegas and out of the 3 I wanted 2 of them so I have 2 wigs that I am really enjoying.

    Good-luck.  Once you have a wig and get used to it you might not ever want to go back to your own hair because it is so much faster to get ready!

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  • Beanius
    Beanius Member Posts: 1,697
    edited May 2010

    Just checking in. My thoughts and prayers have been with you all as you start chemo this month. I've been super busy with tests and doctor visits and traveling to/from distant test facilities, then trying to catch up on work. Did get happy news that my PET/CT doesn't show cancer has spread! Still waiting for bone scan results. Had my first consult with radiologist and will meet oncologist for first time this week. I should find out fairly soon what chemo and when I start...thanks for being here and for your support.

    Beanie

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  • fotopet
    fotopet Member Posts: 91
    edited May 2010

    My little procedure seems to have been a success - the wound looks way better now.  All stiched up, then glued, then taped - Talk about belst AND suspenders!! DH watched to whole thing - said it was really gross.  I didn't need to know that.  So, here's hoping the antibiotics, new stiching, and extra protin do the trick and I am ready for chemo on 5/18!!

    poohbear - Welcome.  Do you know what chemo protocol you will be following?

    Golfergirl - looks like you have the same protocol as I do.  There are lots of us T/C girls here.

    Sacphotomom - Cut my hair two days after the doc said chemo would make it fall out I am almost used to short hair now!  And a friend who went through it last year gave me a wig she never wore (looks just like my normal hair) and scares that were handed down to her by a fellow survivor.  I am ready - Just wish my darn body was!!!

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  • JennyB100104
    JennyB100104 Member Posts: 237
    edited May 2010

    I feel like I'm so wimpy. :(  I went in today for a couple of hours of IV fluids...I had such a bad night last night & was feverish, dizzy, and nauseous & couldn't even walk my kids to the bus stop this morning, so my nurse was concerned I was dehydrated. It seemed to help...a little. I feel like I'm just being a big fat wimp and I should be out there working fulltime like everyone else...so why can't I? I normally don't react to meds very strongly--I thought this would be uncomfortable but workable. Teaches me that I should never make assumptions!

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  • poohbear21
    poohbear21 Member Posts: 26
    edited May 2010

    Hello to everyone.

    Fotopet: Thank you for the welcome. I am having a difficult time deciding between two different protocols. TCx4 and CMFx6. I have heard so many conflicting things that I am so confused and terrified  of them both. I never thought of myself as a vain person, but I must be because I am so concerned with the SE. I have done so much researching on the Internet, I feel I have done myself a disservice  because I have read some very scary things. I need to confirm my decision tomorrow with the onc as far as which regimen I want to do. I just pray I make the right decision for me and I have no regrets.

    marmalade skies:  It is so wonderful to hear that you have someone that is so supportive. I feel the same, my husband is my rock. I can't imagine doing this without him. 

    When I get really down and start feeling sorry for myself I try to remind myself that things could be so much worse. It's been difficult to get my head wrapped around it all. I feel like I'm having an out of body experience or it's only a bad dream. I don't think a day has passed that I haven't cried since I found out. I just want to feel like my self again. I'm afraid I never will.

    I wish luck and many positive thoughts to everyone starting their chemo. 

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  • Drim
    Drim Member Posts: 302
    edited May 2010

    njbhwgirl: That is so sweet of you to offer. I think I'm finally all set with the things I need. If you ever need anything from the city please let me know as well.

    Welcome poohbear: So sorry to hear your story. It must be shocking but I'm sending you good thoughts. You will get through this! This group is great!

    golfergirl: Wow - we were diagnosed on the same day! We're almost in the same position except that today they confirmed that I am HER2+ so I will definitely be needing Herceptin. So now my treatment is a little up in the air until Friday! fotopet: As soon as I get the whole story I will let you know what my treatment is.

    Welcome all the newcomers!

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  • sacphotomom
    sacphotomom Member Posts: 366
    edited May 2010

    Ok so the Chemo went with out a hitch today...took a Valium this morning ..I was really surprised that I slept as well as I did last night, must have been all the running around I did yesterday.

    OK so they gave me anti nausea Amend before, then  a IV form, then some pill to take at home as well as the Amend.  I feel like little pink ninjas are running around my body ready to do battle.  Just waiting to find out if they are going to make me feel their war is kinda different, like a time bomb.

    I have been told that my hair will fall out that fast too 10/14 days the nurse says by the next chemo I will be hairless. So that makes this weekend the time to do some cutting and wig hunting. I to have long hair it has been around my elbows too. for years(I wear a bun all the time because my hair gets in the way)  I cut it to my shoulders just before surgery.  now to go shorter..  I have only had short hair once. 26 years ago!  After my daughter was born, that when I found out I not only had lumpy hair it was very curly...so makes me wonder how it will reveal itself when it re-emerges.  

    Jenny B  thanks for looking out for something for my mom....If Im not feeling to bad in the morn after my appointment I will go to the book store. I was hoping to get to the fabric store so I can make me some light weight cotton/silky summer tops since everythng fits so weird.   and I still cant stand the seams on my tank tops...I have to wear them inside out, under my shirts.  but its already hot.here.. 

    njbhwgirl Im going to look at wigs this evening online just to check them out let you know what I find out!

    WOW ok those steroids are really working I'm running on and on...ok have a Great Day everyone!

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  • Redbarb804
    Redbarb804 Member Posts: 299
    edited May 2010

    Welcome all newcomers!

    Poorbear21: Why did the doctor give you the option of chemos?  Mine just said this is what you will get.

    Marmaladeskies: I totally agree with how great it is to have a wonderful husband.  My man was great before I was diagnosed, he is even more wonderful now.  I just hope he isn''t over doing it himself.

    Sacphotomom:  I LOVED the pink ninja comment!!!  I have to remember that once I start treatment. I am so glad you are feeling pretty good as of now.  Are you going tomorrow for your neulasta shot?   I hope you continue to feel so good.  I was just at a relay for life meeting and one of the ladies there was saying how she didn't have any SEs with the chemo, other than the hair loss.  I'm hoping that for all us May chemo ladies!!!

    Jenny:  Just remember you are not a whimp!  You have no control over how your body tells you to feel.  With your symptoms it sounds like you were definantly dehydrated.  Because of you I am not assuming anything.  Your posts are helping me to be prepared either way, good or bad SEs!!  Stay positive and remember this is all new.    Each day you will start to feel alittle better.  You are in my thoughts and prayers!! 

    marmalade_skies:  Good luck tomorrow.  I will be thinking and praying for you!!

    Barb

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  • Shrek4
    Shrek4 Member Posts: 1,822
    edited May 2010

    I am finally scheduled to start the chemo. It will be T/C x 4 every three weeks.I start Friday, May 7th.

    I wasn't told to take anything prior to chemo, no anti-emetics, no anti-allergy, nothing.  After this, I will have a lymph excision (I only had SN and it was positive, 3 mm tumor). It will be done at the same time as my first recon revision. Then I'll be on Tamoxifen. The BS said that depending on the result, I might have to have radiation therapy. I am already decided to say "no" to that. They ran my "predictions" and it only adds 2% in the survival rate. I was against rad most of my life, and indeed I think (and my BS thinks too) that my BC is due to the Chernobyl thing (I was in Romania at the time, out in the woods picking up mushrooms when the cloud passed over).

    Anyway, I am very nervous about the chemo. I guess I'm not the only one. The worst part is, Friday was supposed to be my boyfriend's day off. Instead, they extended his drill orders and he is in a town 150 miles away and won't be back until Friday evening. I have a very good friend, a very dear lady, who will come pick me up, drive me there, stay with me, bring me back and she said she will be staying with me until he gets home. 

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  • sacphotomom
    sacphotomom Member Posts: 366
    edited May 2010

    fotopet...your dh watched ..wow I'm impressed.. my almost fainted when I had children...

    I have a question that I hope some one can answer before tomorrow...what is the Claritin for how does it help with the nueesta shot  (sp) .  I asked the nurse today and she didnt know 

    Jennyb  thanks for the reminder to keep drinking the water....or fluids....so sorry you had t o go through that..

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  • fotopet
    fotopet Member Posts: 91
    edited May 2010

    Just read my last post - wow the pain killers must have been kicking in - it was the worst spelling ever Embarassed I am feeling ok now after yesterday's procedure but am back on percocet temporarily. Trying some visualization - I knit as a hobby so am imagining my skin knitting together. Can't hurt, right? 

    Jenny - it seems like you are having a rough time - you are most definitely not a wimp! Frankly, I am working only because I have to.  No short-term disability insurance and DH is unemployed at the moment.  Believe me, if I could stop working I would do it in an instant.  Every day is a struggle, phsically and emotionally, to drag myself to work! And I haven't even started chemo yet!!!

    Sacphotomom - I understand from others that the Claritin is supposed to help with the joint pain that some get from the Neulasta.  My onco does not fall into that camp of thought and, since I take Zyrtek for allergies anyway, claritin is out for me. 

    And yeah- DH watched the whole procedure yesterday.  He told me more details last night - big time yuck. 

    poohbear - this whole thing is really scary.  Did your docs give you any meds for anxiety, etc.  I take ativan very night.  If I don;t I ave nightmares about serial killers or other such things that keep tring to kill me but keep missing.  VERY thinly veiled dreams about the cancer thing.  There is no much unknown about all of this that it makes it really hard to deal day-by-day.

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  • newchapter2011
    newchapter2011 Member Posts: 8
    edited May 2010

    Good Morning, I first tried to start a new post with my request....that was about 5:00 this morning and no one responded.  So I've copied and pasted to this forum.  I just want to be included please, please, please.....I start my first chemo tomorrow and I need to hear from others that have been there are getting ready to go through the same thing.

    I was recently diagnosed with breast cancer April 15, 2010.  From that date to now has been a big blur.  What happened to April? After my mammo and ultrasound and the final biopsy that confirmed my diagnosis I've been non stop preparing for this battle.  First met with my surgeon and then my oncologist.  They have decided the best approach to this is to first start chemo then surgery.  I went last Tuesday to have my port put in, and I will begin my first chemo treatment tomorrow (Thursday May 6).  I'm scared to death of course just as many of you were as you faced each of these hurdles.  However, I am a believer in the power of prayer.  And I do know in my heart God in control of everything that happens in our lives.  It might always be what we would consider the best for us.  But there is always a reason for everything.  Up to this point in my life there have been many battles with one thing or another, those battles only made me stronger to be able to face this valley I'm preparing to walk through.

    I am so glad I heard about this website from the Susan Komen message board.  Soooo many survivors stories there.  I truly can relate to so many of their stories so far.  So as I begin this chemo journey I looking for friends that have or currently beginning this journey also.  All of this is so new to me I'm not positive yet of the cocktail.  I do remember my oncologist using the initials ACT.....every 2 wks , 16 wks.  I'm really looking forward to talking to anyone and everyone as we battle this.

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  • fotopet
    fotopet Member Posts: 91
    edited May 2010

    DonnaDoodle - welcome  - please ask away, even though we might not know the answers, we are willing to try to help.  BTW - i think "ACT" stands for A-Adriamycin, C-Cytoxan, T-Taxol. Not sure if anyone else here is on that protocol or not.

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  • Charliebird
    Charliebird Member Posts: 14
    edited May 2010

    Hello All! 

    Thank you for all of your posts--they are helpful and touch my heart in so many ways . . .

    I will be starting on 5/28 with Adriamycin and Cytoxan and will have 4 doses, once every 3 weeks, followed by Taxol once a week for 12 weeks.  At the same time, I have chosen to participate in the E5103 clinical trial (80% chance I will be lucky enough to get the Avastin for either 6 or 12 months)--if not, it's a good feeling to know that in a small way I am doing something to help others who have to fight this horrible disease.

    Then I will have 3 weeks off (woo hoo!) followed by 6 1/2 weeks of radiation.

    Does anyone know how they determine if you should get a "dense dose"? (I am not getting that and forgot to discuss it with my oncologist yesterday).  Seems like it is a more aggressive treatment, and being "triple negative," my understanding is that I need to be as aggressive as possible.

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  • JennyB100104
    JennyB100104 Member Posts: 237
    edited May 2010

    DonnaDoodle, welcome. We're so sorry you had to join us, but we will welcome you with open arms. Your head must still be spinning....

    Day, that's an interesting point about rads. I'm going to have them run some numbers on me as well. I didn't get a mastectomy, but they're really heavy on the rads recommendation, and it's freaking me out. Isn't chemo enough? And wow...that's amazing about Chernobyl.

    sacphotomom, sounds like your treatment went very well! How are you feeling today? 

    Thanks for your kind thoughts, everyone. The good news is that I'm feeling SO much better today. Almost human again. Thank goodness!

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  • Beanius
    Beanius Member Posts: 1,697
    edited May 2010

    Dear Friends,

    Can you help provide information / opinion / experience / wisdom about whether I need a Full Axillary Dissection following a Sentinel Node Biopsy that had 2 out of 6 nodes positive for cancer 2-3 mm sizes)? The Axillary Dis is scheduled for next week.

    (I had a lumpectomy in March 2010 that showed IDC in a 1.1 cm tumor w/clear margins (ER+, PR+, Her2/neu-, Grade 2). MRI, MRI biopsy of another lump, transvag US, PET/CT, bone scan all are negative for cancer.)

    Because 2/6 nodes were positive I will be getting chemotherapy, radiation, hormone tx. (Not sure of all this yet). I would love to avoid another surgery and I'm weighing risk of lymphedema and reduced use of right arm from dissection versus risk of cancer. I work in construction and do a lot of lifting.

    Any words of wisdom are so much appreciated. Also thanks so much for being here and for sharing so much.

    Kindest regards to all,

    Beanie

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  • Beanius
    Beanius Member Posts: 1,697
    edited May 2010

    JennyB - Soooo glad to hear you are doing better. I have been wishing the best for you.

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  • Beanius
    Beanius Member Posts: 1,697
    edited May 2010

    DonnaDoodle - My prayers will be with you!! Good luck tomorrow and stay strong. (I got the news on 3/29/10 so I totally relate to the feelings you've described.) God will be with you for all of this.

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  • mcsushi
    mcsushi Member Posts: 174
    edited May 2010

    wow. lots of newcomers. welcome!! our group keeps growing!

    charliebird: i am in the same ECOG 5103 trial. i start next thurs. i'll be a couple weeks ahead of you and maybe i can give you a little heads up on what to expect. i chose this aggressive tx because of my age and my staging and i'm guessing you chose it because of you being triple negative. i have an appt tues with my onco to go over everything before we start. i'm guessing she'll decide then whether to dose dense me or not. my dr hasn't made a final decision about rads yet either (something screwy came back with the results of my P53 test) and i'm hoping she gives me an answer then. as far as you and dose dense, they might not have decided on dose dense for you because it's already a really aggressive protocol and dose dense adds the possibility of even more complications with anemia and hematopoiesis but i would ask your onco anyway. feel free to pm me if you want to talk about it some more Smile 

    everyone else, keep those heads up!! we'll get there together... 

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  • GolferGirl
    GolferGirl Member Posts: 121
    edited May 2010

    Drim- I glad you finally got results on the HER2 status.  Please keep us posted on any new plan you have. 

     I'm having a little Cinco de Mayo mexican feast tonight before switching over to bland food.  A little last "Hurrah" before the fun and games start on Friday.

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  • Beanius
    Beanius Member Posts: 1,697
    edited May 2010

    sacphotomom - So glad to hear you're doing well! (I have long hair too and it's been that way for a very long time. Will be strange to have no hair, but it does grow back I hear. )

    Day - I wish I could say don't be nervous, but I haven't started yet and I'm soooo nervous! I can say I'm wishing you to have an easy time of it!!

    poohbear - I cry every day too. This is all unbelievable!

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  • Shrek4
    Shrek4 Member Posts: 1,822
    edited May 2010

    Ahhh.. the hair... mine was down below my waist, had it long for years. I had it cut short back in January to get used to not having it. Besides, someone had told me that on T/C with only the amount of treatment I'm supposed to get, I might have a chance of not losing my hair, but if it's long, I'll lose it for sure.

    Beanius, thank youf or the kind words. I am not crying, but I'm quite restless. What is worse is the fact that he is not home and won't be until Friday night. It would probably be easier on me if he was home. I dont know what to say about the node dissection. My BS only took out 1 SN (guess I only had one) and it was positive. But he wants to do the dissection, as an absolute. He is a great specialist and quite known in the field, so I am going with him. He was also the one who suggested that I might not need rads. But my cancer was different. In fact, my largest tumor was only 4 mm, but I had 4 different types of cancer, multifocal. They are considering the whole area as one tumor, that is why they have given me the "IIb" mark (II for the 4 cm size, b for the node involvement). I also had a PET scan with no evidence of mets. Considering how widespread it was, I will go for thenodes dissection. I dont' think he wants to take them all out though.

    JennyB, that is what made me think against rads. I think it was like 79% for 10 years NED vs 81% for 10 years NED.That, and the fact that I had skin-sparing BMX, with only 4 to 7 mm of skin thickness spared, and good clear margins (1 cm anterior, 5 mm chest wall).

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  • JennyB100104
    JennyB100104 Member Posts: 237
    edited May 2010

    Beanie, I don't have much advice to you re: the axillary dissection. Why does your doctor think it's necessary? It seems from what I've been reading here that most diagnoses just go with the SNB results, and then they don't go in further, even with positive nodes. I have nothing to back this up, though, except observation. I hope someone gives you good answers! I'd be hesitant to risk lymphedema & other arm problems too.

    I'm getting my pixie haircut tomorrow. Maybe I'll get some before and after shots done. I have long hair...and have had it all my life!

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  • TriciaB
    TriciaB Member Posts: 16
    edited May 2010

    Hi Ladies.    I had port placement and SNB on Friday.  Started my neo-adjuvant chemo on Monday, May 3. Neulasta boost yesterday.  I will be receiving AC x 4 (8 wks) followed by TH x 12 weeks, then lumpectomy, rads, and more H.  First chemo infusion included Emend, Alaxi and Dexamethasone for nausea.  Sent home with oral Emend and Dexa for a couple of days.  Monday and Tuesday were fine.  No nausea at all.  Feeling a little fuzzy and stomach crampy today but nothing too bad.  My chemo nurse said that not everyone gets the Emend and the Dexa.  Please make sure you get it because I think it really has helped stave off nausea. I know it is early yet, but at least the first two-three days have not been too bad. I am steeling myself for bad days ahead but trying to appreciate the good ones I have had so far.  Also, drinking tons and tons of water which is highly recommended by everyone I know.  It flushes the bad stuff out more quickly.  And another thing.  I don't know if it will work but I chewed on ice chips during the infusion.  It's sort of the same theory as the cold caps. Like your hair cells, cells in your mouth duplicate (or is it replicate?) quickly so these drugs affect them like the fast growing cancer cells.  If you keep the cells in the mouth cold during infusion, they might absorb less of the "medicine" that they don't need.  I'll keep you posted.  Finally, in other good news, the results of Friday's SNB came back late yesterday and they pulled three nodes, none of which had any cancer.  So I'm 0/3, node-wise. I hope this post is not too factual and long.  Best to you all.  I'm thinking about you and sending good vibes.

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  • dana14
    dana14 Member Posts: 20
    edited May 2010

    Started AC on the 4th, Neulasta shot today, i.e. on the 5th.  No SE so far other than bloating.

    Expected the worst since I was very sick after my surgeries.   

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  • Shrek4
    Shrek4 Member Posts: 1,822
    edited May 2010

    I see that most of you get Neulasta kind of preventive. My onc said that I won't get Neulasta unless my blood test 10 days after the first treatment shows a low white cells count. Is that normal?

    On the other hand, I have a bone density problem, due to a severe Vit D defficiency I had 3 years ago. Do you think that is why?

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  • JennyB100104
    JennyB100104 Member Posts: 237
    edited May 2010

    Hi Tricia, Sounds like you're doing great! I'm interested to see whether you get Neulasta SE's--mine were brutal from days 2-5 after the shot, but I hear a lot of people don't get hit hard at all. I'm finally feeling much,much better.

    I've done well with the nausea meds too--yay for no severe nausea! I've heard that about ice chips in your mouth during the infusion--I think I might try that next time, though I did drink cold water throughout and I haven't had any mouth problems (besides a mildly dry & fuzzy mouth) since.

    I've been drinking tons of water too, all day long, but my nurse still felt I was dehydrated yesterday (enough to go in for IV hydration). Watch out for those night sweats--they can deplete your stores fast, I think. I've been running a low-grade fever and that probably doesn't help, either.

     Dana, that's great that you haven't had any bad SEs so far. Fingers crossed you get nothing more.

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  • Drim
    Drim Member Posts: 302
    edited May 2010

    Hi Tricia! I see I now have a HER2+ sister in this group. I did not think your post was too detailed at all. I think it's good for us to know what happens - especially those who have yet to start like me. Good tip about the ice chips. I actually am doing the cold caps. I was inquiring about cold everything - head, eyebrows, fingers, toes - now mouth! OMG - they might as well do my infusion in a freezer.

    Golfergirl - I laughed about your last hurrah post since I've been saying that for weeks now.

    Welcome CharlieBird, Dana and Day.

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  • Redbarb804
    Redbarb804 Member Posts: 299
    edited May 2010

    Hi Ladies.  I wanted to check to see if anyone knows the thread that has a list of things you need to have ready before you start chemo.  Also the Claritin, do you start that the day you get the shot or before chemo?  also are there any questions I need to ask at my chemo teaching session next Thursday?  If you have any shot them my way. 

    Thanks BArb

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  • Redbarb804
    Redbarb804 Member Posts: 299
    edited May 2010

    Hi Marmalade_skies:  I've been thinking about you all day.  HOw are you feeling?  Hope you are having an easy go of it.

    DonnaDoodle50:  Good luck tomorrow.  I'll be thinking about you all day.

    Barb

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