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Denise_S's avatar
Denise_S
Member
12 years ago

My Journey So Far

Hi everyone, I was diagnosed with lobular carcinoma invasive on the 4th of October, I had a left breast mastectomy and sentinel node biopsy on the 29th of October, results of the surgery a week later the tumor was 47mm and had started to grow into the muscle on the chest wall, they removed as much as they could, lymph nodes are clear, (4 removed and all are clear) I started my first of four cycles of chemo yesterday, today the skin on my chest and arms is a little red, using Moo Goo moisturiser to help with this, I am feeling a little anxious just waiting for other side effects to start, I keep pulling at my hair to see if it's going to fall out, driving my self mad. After chemo I start radio therapy for five weeks and then hormone treatment for five years, would love to talk to anyone else in my situation, it's lonely with so few people to talk to, please help.....

10 Replies

  • Denise_S's avatar
    Denise_S
    Member
    12 years ago
    Hi Danelle, Good to hear from you, sounds like you have been through the mill, hope you are feeling better, I also have the furry mouth went to GP and he gave me xylocaine viscous it numbs the tongue completely $85.00 but worth every cent he also recommend difflam anti inflammatory mouth wash these helped me so much I would highly recommend you get both, I also have the vagina thing but have not talked to anyone about it I have been using ice packs and this helps, I am not constipated in fact for 3 days I was the opposite today is the first day that I feel anyway normal and am hoping that I will get nothing else, my 2nd treatment is on the 5th of December and I have to say I am already feeling nervous, did your side effects get worse on your 2nd round or just the same as the 1st? Hope to hear from you soon xx
  • Denelle's avatar
    Denelle
    Member
    12 years ago

    Hello Denise & Robyn , How are you both going on your Chemo ???

    I am doing ok .......just the furry tongue .....skin is drying out a little on the toes & hands ....little bit of constipation that good old pear juice fixed for me ......nothing to write home about , but I am having a little soreness happening on my vagina lips ( think I may be wiping too hard ) but it doesn't sting or hurt to wee .......

    Recieved my first shot of Neulasta ( as on the first Chemo dose temp hit 38.5 and hopsitalised-- but that was on the 11th day  ..bloods showed no sign of infection anywhere tho .....so Onco said day after Chemo from now on have a shot of  Neulasta to help build blood cells .......7th day now ...and only yesterday did I feel aches ..... I was told would be massive aches in my main big bones & lower back .....the aches I had yesterday & the  little off feeling , where very much just like the Flu .......I took panadol, as was told to take nothing but panadol & slept for 4 hours ....woke, felt not 100% but was ok .

    How are you both ???

    Blessings & Prayers to you both , hoping you both are ok and waiting to see you both type ..Much Love xox.

  • Robyn_W's avatar
    Robyn_W
    Member
    12 years ago
    Those good old Dex tablets!I take mine straight after breakfast and straight after lunch too.My oncologist told me that if u take them later they will affect your sleeping too much.cheers.
  • Denise_S's avatar
    Denise_S
    Member
    12 years ago
    Hi Robyn, thanks for that I will call nurse today to check this, the rash is not itchy, just looks like sunburn. Thanks for the support Robyn hope every thing goes well for you, keep in touch xxx
  • Denise_S's avatar
    Denise_S
    Member
    12 years ago
    Hi Danielle, about the pre chemo tabs, that we take for three days, my oncologist told me to take them at 8am and then at 3pm I too could not sleep for the first night, but the pharmacist at the hospital told me to switch the time of the second tab to 1pm and this would stop this happening he was right fell asleep right away last night, only waking for frequent toilet breaks due to all the water I'm drinking during the day, redness still there but it's not itchy, I also have furry mouth, water tastes ok but food is tasteless and I don't seem to be able to eat much, I really hope that everything goes well for you today I'll keep my fingers crossed for you, just think after Monday you will only have two more cycles to go, you will be half way through. It's so good to talk to someone going through the same treatment as me only wish that nobody ever had too. Please keep in touch sending a big hug to you xxx
  • Denelle's avatar
    Denelle
    Member
    12 years ago

    Hi Denise , I am also having 4 rounds of TC .....my second dose is coming up on Monday 18th November . Tomorrow is my pre chemo appointment with my oncologist  & my bloods . Fingers crossed my cell count will be up and chemo can proceed :) ...My hair loss started on day 13 .....I have only had redness in the face but onco nurse told me when I rang them that it is from the tablet given during chemo and the same tablet we take 2 days after at home , this is the same tablet I have to take the day before I go in for chemo . Tablet also kept me awake for 2 nights .The redness went away after 2 days . Over all I have been sailing along nicely just every bottle of water tastes metalic , had 2 days of fur mouth .... I haven't lost my appetite at all and I drink water like a buffalo :) So over all I am doing really well , I too was very much like you , pulled my hair , woke everyday thinking what is today going to bring me ....and now 3 weeks later I am not as scared for my 2nd dose. Robyn seems to be one step ahead of me & I am one step ahead of you , so I am sure between the 3 of us & maybe more still to read this ...we'll be able to keep each other up to speed on each others progress . But always know Denise , you are never alone & never feel lonely , we are all with you in Spirit xox. Oh and I am in Townsville , so hello to my new southern pink sister down there in Brissy :)

     

  • Robyn_W's avatar
    Robyn_W
    Member
    12 years ago

    I just wanted to add Denise,that you are having the same chemo as me,so hopefully you won't find it too bad.After my first round,I got a red itchy rash on my neck.I ended up calling the RPA breast care nurse,and she told me to buy sigmacort1% from the chemist.I used it and the rash was gone within 24 hours.One day at a time,and look after yourself.oxoxoRobyn

  • Denise_S's avatar
    Denise_S
    Member
    12 years ago
    Hi Michelle, I am originally from Ireland, living in Brisbane for the last 11 years, so no family here, the chemo treatment plan I'm on is TC, for 4 cycles, I went to the look good feel better workshop yesterday before my chemo treatment and I had a lovely time full of helpful tips, I had my hair cut two weeks ago but it's growing back really fast, plan to get it cut again this weekend. Thanks so much Michelle for replying to my post any further information would be greatly appreciated xx
  • Denise_S's avatar
    Denise_S
    Member
    12 years ago
    Hi Robyn, I am living in Brisbane, having treatment at the Mater hospital, I also wlalk every day, about the same distance as you and am enjoying it. I cut my hair really short two weeks ago but it is growing like wildfire and plan to have it cut shorter at the weekend, the thoughts of waking up and finding my hair on the pillow terrifies me, never realised I was so vane, thanks so much for replying to my post, it's good to talk....
  • Michelle_R's avatar
    Michelle_R
    Member
    12 years ago

    So sorry you have joined the club that nobody wants to be in - however you have come to the right place for all the love and support and information you will need.  You are already past the biggest hurdle - surgery - and heading over the second with chemo.  Just take it all one day at a time, from chemo to chemo, until it's done, which will come faster than you think.  (Rads is a breeze after chemo so no need to even think about it at this stage.)  You don't say where you are from, but hopefully there are groups in your area for face-to-face support, and if not you can always post here and someone will be here to answer.

    Have been to a Look Good Feel Better workshop yet?  They are wonderful for morale, and give all sorts of advice for scarf tying, wigs, etc.  The Cancer Council even has a wig library where you can try different styles.  They also give you makeup and creams, and teach how to apply them.  It is a funny meeting and really enjoyable.  Contact them online or through the Cancer Council or Hospital.

    When you hair starts to fall out, have it cut very short or shave it off.  It is the hardest part for us all, but not as bad as you think.  We have all been there.

    At the moment it is all overwhelming for you.  It will settle down into a routine and things will get easier.  Moo Goo is great, before, during and after radiation therapy, to keep your skin in top condition.

    Let us know your chemo combination - someone here will have tips for coping.  Do you have strong family support?  Sending you a big hug - keep in touch -  Michelle xxx