Starting Chemo in December 2013

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  • kjfromca
    kjfromca Member Posts: 283
    edited January 2014

    Welcome new ladies - My vein area in my right arm where I had #1 chemo started really hurting to touch last week.  Odd, as I have been using a port since #2 treatment.   My MO told me to use heat 4 times a day.  I am thankful that I don't have to have an IV in it, but it is really hurting.  I go in for round #4 on Thurs.  if all goes well, looking forward to finishing up on the red devil.  I meet with my MO tomorrow and will be requesting low does Taxol opposed to douse dense.  I will let you know how it goes.  

    I haven't had mouth sores, but have a canker sore in the crease of my lip that is a pain.  These SEs are a pain in the butt.

    I started getting pretty down yesterday, it seems like my older family members think that because of the bc that pink should be my new color and I need all things bc oriented.  Gotta love them, their hearts are in a good place, but I am in a F--k C mood, not in a let's wear pink, wrap myself in pink, and wear cute bc trinkets mood.   Also, I find that people try to identify with me by telling me about someone in their family who has cancer and is not doing so well.  I love to hear the positive stories, but the negative really drags me down.  Sorry, just venting, I hope I didn't offend anyone.

    Now that I vented, I think I will read my daily devotional and go for a walk....I need it.

    Kim

  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited January 2014

    Kim, I'm with you as far as not wanting anything pink.  My Mom handed me a bc calendar the other day and I told her I didn't want anything pink.  She looked at me funny and I told her that I never want to see pink again.  I know some women find it empowering like we're all in this battle together.  I was like that the first time I had bc.  Not the second time.  I found out both times at the beginning of October.  I couldn't wait October to be over so I wouldn't have to see those pink ribbons all over the t.v. I thought after having a double mastectomy at the age of 34 meant I would never have t hear that I had brest cancer "again." 6 years later, he I am.

  • jackieak
    jackieak Member Posts: 169
    edited January 2014

    hi all,

    Day 5... After round 3... 85% normal! I didn't get the fatigue as bad this time and actually just had one really awful flu like day on Sunday.   I do have the thrush and been doing apple cider vinegar rinse and daily yogurt, it's just gross looking.  I don't like the biotene either but have been using it.  I've been putting vitamin E oil on and soreness in the mouth I feel, per my MO suggested that for I so hate to use more prescription drugs.  

    Very dry skin, but keeping it under control, I have some red patchy places on nose.  It looks like my hair is growing again, but I'm sure the last round will clear this up again.  My PS yesterday said for me to wait on the lattise for lashes and brows, she said wait till chemo over and it will work much better, thankfully so far no loss there but I'm thinking it's coming.  Best to all...middle of winter but I can see that sunlight at the end of this ugly tunnel

  • DJJ
    DJJ Member Posts: 229
    edited January 2014

    My vein area in my left arm from Round one 5 weeks ago still bothers me.  Sometimes worse then others.  I asked the nurses at the infusion center and they say it will take a while to feel normal.  Glad I have the port.

    I'm also in a F*^K Cancer Mood and everyone else for that matter!!! I'm supposed to be in Hawaii right now with my girlfriends, not facing round 4 on Friday.  They blew up a picture of me and are taking it with them on their Hawaii adventures and are taking pictures of my picture with them in Hawaii.  So sweet, but pissing me off at the same time!!! I don't want to see what I'm missing!!! AAARRGGHH!! Done ranting.  Now back to work Bawling

  • Amazonwarrior
    Amazonwarrior Member Posts: 485
    edited January 2014

    @ mouth issues: I am trying the following mouth rinse: one tsp of baking soda in a cup of water. Or I just dip my toothbrush in the baking soda, and brush with it, as my gums are currently quite sensiteve.

    @ hair: My hairdresser cut my hair about 10 days after my 1st infusion. I had it braided because I intend to donate my hair for kids with cancer. 

    Here is a pic of my hair...

    image

  • Amazonwarrior
    Amazonwarrior Member Posts: 485
    edited January 2014

    Today, I got a package with the temporary breast prostheses and an exercise kit from the Canadian Cancer Society. Here is the pic.

    image

  • RHGSR
    RHGSR Member Posts: 774
    edited January 2014

    Barbara- I wonder if I should talk to my MO? They found an ILC that was hiding after my surgery. That is where they think it went to the nodes. I go for a follow up on Friday before my second infusion next week. I think I may ask. What do you think?

    Day 13 from first infusion. My hair is starting to come out. None on my pillow, my any gentle pull and many strands come out. Kind of freaks me out. I knew it would happen... I know it will grow back... Still freaks me out. 

  • RHGSR
    RHGSR Member Posts: 774
    edited January 2014

    mikesgirl- please ignore me if this is too sensitive a question to ask- the BC came back regardless of the double mastectomy? I ask because I had a double mastectomy and I'm 37. 

    I too am tired of pink. My hubby bought me those hot pink tennis shoes on my picture. I'm wearing those to chemo and later to rads. When this is all over I'm gonna BURN them :0)

    DJJ- so very sorry you are missing your trip. But I gotta say you got some awesome girlfriends. 

  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited January 2014

    RHGSR, yes the cancer came back.  This was NOT suppose to happen.  I had D.C.I.S. bc only in my left breast.  I was aggressive because I had a 50% chance of it starting in the right breast eventually.  I decided I didn't want to have to worry so take them both.  I had very clear margins and was actually told that I was cured.  Go live my life. No follow up visits or anything else needed to be done.  I said "What do I look for in case it comes back."  My doctor said it wasn't going to happen, but it would feel like a pea on the incision scar.  I felt my breast at least once a day, and one day I noticed a pea size something deep in my breast.  I went for a biopsy and it was TNBC.  The doctor didn't know what to say.  She said she couldn't even feel it and it wouldn't have been picked up in any exams.  It wasn't even where they would look for it.  God was on my side. Check your breast even if you have a mastectomy.  If I had to do it all over again I would have had radiation because it came back in the exact spot.

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited January 2014

    RHGSR

    my initial biopsy of the lump that I found and the US showed was just IDC and <1 cm on US, it was after the wide excision they found the ILC component that made the total area 1.6 cm. The lymph nodes had both the IDC and ILC in them but mostly it was ILC.  I am concerned about just having the lumpectomy and not a mastectomy, not that I want more surgery but I am concerned since there were also a few spots if LCIS situ scattered in the biopsy specimen. I may go to Fox Chase in Philadelphia for a second opinion on the surgery part before committing to whole breast radiation in addition to the axillary RT.    

    discuss with your MO for sure.  I think the dose dense vs regular dose is a personal preference for the Oncologists. 

    I freaked out my sons when I would sit and gently run my fingers through my hair and come out with 10-20 strands at a time.  worst part is the pile on the shower floor after washing it.  that is when I gave up and clipped it short.  Good luck, baldness is the visible sign of what we are going through and really its hard when it happens.  

    Barbara

  • RHGSR
    RHGSR Member Posts: 774
    edited January 2014

    I was first DX with IDC 3 cm and DCIS in right breast. I opted for the double mastectomy because of my age... I didn't want to have to worry about it coming back. I'm glad I did that. After surgery they found the IDC was over 3.5 cm, the ILC, and nodes on the right but also my left was full of LCIS. Craziness. 

    Thank you for your honesty and support ladies! 

  • oranje_mama
    oranje_mama Member Posts: 260
    edited January 2014

    DJJ, I feel for you! I think you said you are planning a big trip for when treatment is over? 

    We were supposed to leave Thursday for our canada ski trip. I'm glad we decided not to go - still feeling walloped by #2 today. But thanks to Amy, we are going to do some skiing closer to home next weekend :).

    So far, baking soda/salt rinse seems to be working pretty well.

  • jackieak
    jackieak Member Posts: 169
    edited January 2014

    DJJ

    I feel your pain, I booked a week in Maui a year ahead for Xmas, and Vegas was New Years, then BAM comes this...I don't even remember the month of Oct., I just was on auto pilot.  If it weren't for my family and close friends I can't imagine getting through this.  But it's here and we are all facing it day by day...I sometimes wish I'd wake up from this nightmare...I often in crowds count the  1 in 8 women...it amazing how many women that really is who gets this crap...

    Amazon...your hair is beautiful and will continue to be on a very deserving child...that is awesome.

  • charusa
    charusa Member Posts: 107
    edited January 2014

    Beths 1, I have been on Klonapin and xanax for years now, it was the combination that finally got me off the couch and start to go outside when I was first diagnosed with panic/anxiety disorder. I spent almost 2 years in my house afraid to move. So I don't get any ativan. 

    I am scheduled for 8 rounds of the red devil...not sure why except I have very large mas (nodes) under my arm. I am very anxious to ask my oncologist to check mine b/c I can't really feel the one in my breast anymore and that one popped out where you could see it. It is what keeps me going is knowing that it is shrinking. 

    What happens if the tumor completely shrinks and nothing is left? Do you still get surgery?

    Another question ... what is everyone washing their head with shampoo or soap? I think I finally got all the stubble off today and all I have is the peach fuzz stubble that I haven't shaved yet but I still find myself reaching for the shampoo....funny I gave away all my hair products that I had but my shampoo and condtiioner still sit on the shelf in the shower.

    Charlotte

  • Carol99
    Carol99 Member Posts: 116
    edited January 2014

    I get irritated with the pink ribbons too! I was Diagnosed right around October, couldn't stand all the bc  "awareness" commercials.   There is a movie on you tube, Pink ribbons, Inc. it's a very informative & sad movie about the business of pink.  

    http://youtu.be/TNMELBDFuJY

    Mikesgirl, truly God was on your side, I will check!  I'm going to bring up rad. To my MO.

  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited January 2014

    Charlotte - for what it's worth, I still use tiny amounts of shampoo and conditioner.  Seems to be working as I don't have any issues with dryness.

  • AZ3771
    AZ3771 Member Posts: 4
    edited January 2014

    bren58 I really needed that.  I started taxol and herceptin the day before xgiving...my hair is gone and I have 5 more weeks to go.  Overall I feel good but I am worried when I will feel 'Normal' again.  I definitly feel the fatigue setting in.  Knowing that you have bounced back really helps.  Thank you!

  • jackieak
    jackieak Member Posts: 169
    edited January 2014

    I keep trying to ring out my hair prior to grabbing for the towel...nothing but air there, no hair...

  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited January 2014

    I went to plug in my curling iron today and started laughing......

  • AZ3771
    AZ3771 Member Posts: 4
    edited January 2014

    hah!  Yeah and wrapping your hair in a towel...that doesn't work either.

  • RobinLK
    RobinLK Member Posts: 840
    edited January 2014

    I have been using baby shampoo. Have not had an issue with dryness. 

  • RHGSR
    RHGSR Member Posts: 774
    edited January 2014

    we are shaving my head tomorrow. I'm 14 days out from AC round 1 (round 2 is next week). It is coming out in clumps now. Started last night.  Any light pull and you come up with a handful. Just as well shave it than keep pulling it out. 

    My hubby came home tonight with a shaved head!!  I love him more now than ever before. Gives me courage for tomorrow!!

  • denise4603
    denise4603 Member Posts: 132
    edited January 2014

    Beths1 - No, the Decadron doesn't last long. I get energetic and hungry for 24 hours, then I get the red face and it's over with.

  • beths1
    beths1 Member Posts: 44
    edited January 2014

    Hi Char,

    I am hoping and praying my treatment schedule will be 4 red devil but because I had multiple and large (3.8 cm) tumors, it always been out there that we may need 8.  I have wrapped my head around 4 but get really anxious thinking there could be more.  Don't want to be a baby but come on................how much can we take of this shit.

    Baby shampoo seems to be working fine

    So now wondering what is up with my sleeping.    Only sleep 3-4 hrs a night and feeling exhausted.  That,s with ambien.  This is driving me nuts.   Guess time to check in with MO.  Beginning to feel run down.   I have been blaming decadron...........something else?     Anyone else not sleeping ?

  • beths1
    beths1 Member Posts: 44
    edited January 2014

    RHGSR.          sounds like you have a wonderful hubby.   So glad to hear that you are doing better.   Your spirit is strong.........go girl.........you got this!

  • DJJ
    DJJ Member Posts: 229
    edited January 2014

    Thanks ladies, I pulled out my Northern California (August) and my Peru (Spring 2015) books out and worked on itineraries last night.  Made me feel much better about missing Hawaii.  This will be over and we will have our lives back to normal!

    Amazon, what a great thing to do with your hair.  That's awesome!

    Charusa, Yes you still have surgery if the tumor is gone.  I had an appointment with my Breast Surgeon last Tuesday and asked that very question because my tumor has shrunk so much in 4 weeks.  She said that I would need an appointment with my radiologist and she would use the tracer that she put in to find th area and better mark it for the surgeon.  Then she would remove an area to test and still take a few lymph nodes to test. 

    Funny thing happened last night.  Went to happy hour with friends, taking advantage of my good week, and I got asked out.  Hee hee, I guess men do like bald woman!

    I keep trying to ring water out of my hair after showers too Loopy

  • QuirkyGirl
    QuirkyGirl Member Posts: 383
    edited January 2014

    beths - I haven't slept through the night in weeks.  Hope you have better luck!

  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited January 2014

    I was so tired last night I went to bed and forgot to take the Ativan.  As I lay in bed I thought about getting up and taking it but decided to try the night without it.  Fell asleep but woke up about every 2 hours. Was able to go back to sleep but not a very restful night. I guess I will just surrender and take the Ativan nightly for a while. I feel better in the morning then when I took Ambien.

    I still wrap the towel around my head after the shower also. Just keep it wrapped while I do my post shower routine like I used to. Keeps the noggin warmer. I still automatically reach up for the shampoo and use just a drop to clean the bald head.   I guess following the old  routines just make you feel a little more normal.

    Going to the supermarket today to stock up before chemo on Thurs.  Keep telling myself I am half way through the red devil, tomorrow round  #3 will be done.

    Barbara

  • momat927
    momat927 Member Posts: 173
    edited January 2014

    Hi Ladies.  I have not been on the board for quite awhile so trying to catch up. 

    Kim- i am so sorry about your loss.  This kind of loss is powerful.  

    Someone in early Jan asked about uti's.   I get one after my Cytoxan and Taxotere and learned it can definitely be an SE.  I drink tons of cranberry juice and so far haven't   needed antibiotics but of course will have to take if worsens. Always call MO because can become serious

    About washing nearly bald heads- finding a natural shampoo by EO with lavender & aloe works best for me.  I was breaking out all over my head before using.  

    Next chemo tomorrow. Ugh. Round 3. Here we go 

    Hope you all have an easy ride today. 

    Amy

  • jackieak
    jackieak Member Posts: 169
    edited January 2014

    I've gone back to my 10 mg of melatonin for sleep, I take the Ativan the day of chemo and several evenings after..the decadron I have in my IV and for two days as well..it does give you energy but it hasn't bothered my sleep.  I have to say the melatonin works best for me, I get at least 7 hours and no grogginess waking up.  I've added my multivitamin this last week daily and I think it has helped as well with energy levels, able to work 7 hours in the office before I feel tired.  I've been bad on the treadmill lately I need to get back on that horse...

    Use baby shampoo as well, and coconut oil at night on the head, the only dryness I seem to have is on my forehead and areas of face, which I drench in night cream as well...I think winter weather has allot to do with it.

    Crazywabbit....good way to look at the devil..I have one more on 1/23 then we are on the same taxol schedule I start 2/13 weekly...since I asked for a three week break to do vegas on 2/6 for 5 days.  Getting my arm sleeves fitted today, I will get both just to be cautious traveling, left only had sentinel node but right they took all of them.  PS also has me starting myofacial release for auxiliary webbing, I've so missed my massages so I'm looking forward to that.  I think we all need more pampering on ourselves, I never turn down an offer of a nice back rub from my family...wishing all a feel good day!

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