please help

Options
12526283031532

Comments

  • nowheregirl
    nowheregirl Member Posts: 894
    edited November 2007

    {{{{{Sue}}}}}

    Sorry you have to go through this. Yes chemo is not fun at all but believe me it's bearable. I can tell you this because I did chemo a total of 28 times (12 Taxol before/after surgery and 4 EC). If I can do that, then you can do that too for sure! Epirubicin was the hardest part for me and I felt really sick. But I didn't even take a single sick day from work. I was able to recover in a week or a couple of days more. 3 weeks is enough long to get better.

    As for the stats, here's my theory. The odds of my cancer coming back are either 100% or 0%. It doesn't matter what those stats or doctors say because everyone is different. We are not numbers. I have figured that it's pointless to be worried if my odds were either 100% or 0%. If I had to fall into the 100% group, I wouldn't want to spend my very limited time being worried. And if I fell into the 0% group, then there's no need to be worried in the first place!

    I know, I am just too air-headed but that does help!

    Poppy, I have no words of wisdom about the period thing as I was in chemopause when I had a lumpectomy. But know you're in my thoughts and that I will be sending a lot of healing and soothing vibes your way across the Pacific.

    Everyone, have a lovely Wednesday. Mine was already over.

    xo

    Fumi

  • sueps
    sueps Member Posts: 2,266
    edited November 2007

    Hello Tender....Thankyou so much

    Basically you are absolutely correct about the trial drug...there are 3 different trials...the first is the standard one with the epirubicin squashed together. And the 2nd and third is... with the capcitabine. He told me it was the c of the cmf and it would burn my hands but the side effects are possibly slightly less.The doses are every 3 or every 4 weeks....and it is tablet form

    If I do chemo I will most likely stick with the standard plan, as if I choose to trial I will not be able to choose which trial...... it will be at discretion, and I also dont want my hands to burn ....

    So the plan is that I will drag myself off to the wig shop tmw....as the NHS give a free wig ....and there will be no commitment still...but at least I will have sorted that...Also the plan is to think ,think and think again....

    I will be in menopause for the rest of my life....I just dont understand why they are doing 2 weeks on 2 weeks off. with the cmf...I wont have time to breathe!...but he told me it was a proven method...

    I am going to do some research  xxx

  • sueps
    sueps Member Posts: 2,266
    edited November 2007

    Valerie Surprised  get some work done....lol....I would make you a nice cuppa if you were here...xxx

    Fumi....exactly my stance on statistics...I must really train my head one step at a time....I am glad you for warned me about the epirubicin..... I need to be gritty.....I feel really miserable but still happy...which probably wont be the case nxt week xxx

  • nowheregirl
    nowheregirl Member Posts: 894
    edited November 2007

    Sue, I forgot to tell you something important. Epirubicin was pretty hard for me mainly because the antinausea meds didn't work at all. It was like sailing alone in the ocean getting seasick for an entire week. But from what I have heard from those in the States, they have more antinausea meds than we do here because it takes way too longer here to get the drugs to be approved than in the States. So many of my friends there didn't suffer from nausea as much as I did because of the good meds. So there's a good chance that you'll be given effective meds.

    xo

    Fumi

  • geebung
    geebung Member Posts: 1,851
    edited November 2007

    Hi Sue,

    The others here have so much knowledge about these drugs. I can't shed any light at all on such things so I just wanted to check in with you and send you my love. It sounds as though you will need a few days to get your head around all this. I hope you will soon feel a sense of conviction about the right decision - I can only imagine how difficult it is to digest all the information from the docs and try to make sense of it all.

    Hugs,

    gb 

  • my3girls
    my3girls Member Posts: 3,766
    edited November 2007

    I feel for you!  I am now considered a SURVIVOR!

  • my3girls
    my3girls Member Posts: 3,766
    edited November 2007

    I feel for you!  I am now considered a SURVIVOR! 

  • my3girls
    my3girls Member Posts: 3,766
    edited November 2007

    I feel for you!  I am now considered a SURVIVOR!  I

  • my3girls
    my3girls Member Posts: 3,766
    edited November 2007

    I feel for you!  I am now considered a SURVIVOR!  I was

  • my3girls
    my3girls Member Posts: 3,766
    edited November 2007

    I feel for you!  I am now considered a Survivor!  You will be too!  It is a long and sometimes very scary road.  But you can do it!  Have a fighting attitude and try as hard as you can to keep your spirits up!  Your attitude is so very important in the fight and to help you mentally deal with this.  I was diagnosed March 6, 2007. I went through 8 rounds of chemo. Adriomycin (sp) Citoxin and then Taxotere.  The anti-nausea meds are great, they make you sleep, but I never got sick!  I had 22 lymph nodes removed at the end of September, and a lumpectomy.  Then 4 days later found out the margins were not clear.  They nodes were..thank God!  I went in 3 days later and had a mastectomy.  This was very difficult to deal with, but I have.  I have worked full time through all of this, taking off a few days here and there the weeks of chemo.  I was off work for 4 weeks for the 2 surgeries.  I just want you to know to stay as strong as possible...it really helped me get through this to keep a very positive upbeat spirit.  Its ok to break down and have your crying spells, you need that!  But to fight this dreaded disease..be a warrior!

    My prognosis looks good.  I dont know all the particulars of my cancer, like most people on here.  But that is me...it is not that important to me.  I know it is estrogen based, and I know what I need to do to keep it from coming back..and that is the most important.  I follow what the doctor says to do! 

    My hair is coming in, and hopefully early 2008 I will have reocnstruction.  Life is looking good. 

    You will be feeling this too....I promise.

    My best to you..and prayers for your healing and strength.

    LisaLaughing

  • livesstrong
    livesstrong Member Posts: 1,799
    edited November 2007

    Sue, The first pic was during chemo Nov.'06 - thats my nephew Griffen with my wig on.  The second was Christnas Eve '06 with the wig and DH - and no, were weren't they only ones drinking out of that bottle!!

    Valerie 

  • sueps
    sueps Member Posts: 2,266
    edited November 2007

    Valerie...what wonderful pics...that bottle looks good too! Your wig is fantastic.....I feel better when I read these posts and see the pics...thnakyou from the bottom of my heart xxx

    Lisa...you give me strength in your post......but what if its going to come back or the chemo doesnt work...it is agressive trip neg....also it had deep margins...don't know what that means...

    My head is mixed up still about treatment xx

  • sueps
    sueps Member Posts: 2,266
    edited November 2007

    I mean I had a mastectomy and my margins were deep,the tumour was on the chest wall....this worries me xx

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2007

     Sue---American Idol starts up again in January--they start by showing contestants from about 4 or 5 major cities---  then it wraps up with the finale in May.  I wish they could somehow make it a year round show-- it's good entertainment.  Carrie Underwood is on the Country Music Awards tonight--I don't really like country music, but I will watch it just to see her perform.

  • sueps
    sueps Member Posts: 2,266
    edited November 2007

    awww...Thankyou!!! I love that show...we have XFACTOR with Simon Cowell here until crimbo and then I will have American Idol in Jan..we see it one week after you I think so dont give me any spoilers LOL

    Much Love xxx

  • my3girls
    my3girls Member Posts: 3,766
    edited November 2007

    sue....I know your cancer may sound scary.  But think of this...my Ukranian grandmother used to say this to us when we were younger in her very broken english..."worry is for shit"! Haha..saying it makes me laugh.  But it is so true...what will us worrying about any and all of this crazy disease change?? Answer...NOTHING!  So..Sue...try to stay positive..think positive...pray and try NOT to worry.  I think your recovery will be remarkable, and we will be reading wonderful posts from you, many many years down the road!

    xoxo

    Lisa

  • my3girls
    my3girls Member Posts: 3,766
    edited November 2007
    sorry about my earlier post...I see the mistake I made...there...did that make you smile? Tongue out
  • sueps
    sueps Member Posts: 2,266
    edited November 2007

    lol...don't worry about being sorry for the earlier post 'worry is for shit ' lol....I laughed my head off...and of course your last post is truly right....worry is for shit....hahaha

    I will be positive xxx

  • my3girls
    my3girls Member Posts: 3,766
    edited November 2007

    LOL...I am glad you enjoyed my  Baba's saying..she would love to know that she brought smiles to someone's face.

    Laughter is very good medicine!

    Stay positive!

    (by the way..the little pic you have...is that a Mary Cassatt?)

  • Shirlann
    Shirlann Member Posts: 3,302
    edited November 2007

    Hey baby, I am not too crazy about trials.  At least the ones where "some" participants get nothing.  Screw that!  You want the whole nine yards, then, there is never any, "what if I had" thoughts in your mind.  Hit it with all you've got, the first shot at this is the best one.

    I think the Deep Margins is a good thing, I think it means they are wide.  Different words, but that is what it sounds like.

    So go, make the dates, show up, gripe with us every day/evening and before you know it, we will be making Valentines!  It will go fast.

    So, love you Sweet Sue, XXXOOO Shirlann 

  • sueps
    sueps Member Posts: 2,266
    edited November 2007

    I fell asleep downstairs in front of my laptop and its 3am Surprised  ...I woken up shouting 'I just want to be normal' 

    Sweetdreams Everyone xxxxxxx

  • sueps
    sueps Member Posts: 2,266
    edited November 2007

    Shirlann... xxxxx...thats a good positive for not doing the trials , I never thought of the whole nine yards...very true! Well I must get to bed or I won't be able to buy that wig tomorrow...

    And Lisa, I do not know who Mary is but that pic was taken in Hyde Park...and its of moi LOL

    Much Love xxx

  • geebung
    geebung Member Posts: 1,851
    edited November 2007

    Wow Lisa! You just tripped something off in my brain! I have been looking at Sue's lovely photo for weeks and the question you asked ("is that a Mary Cassatt?") really makes sense!! Sue - your photo IS like an impressionist painting! There you are Sue, if you ever get tired of working at Subway, you can become an artist's model!

    Hope you had a restful sleep. Good luck with the wig hunting - would love to see some photos soon!

    hugs,

    gb 

  • nowheregirl
    nowheregirl Member Posts: 894
    edited November 2007

    Hi Sue and all,

    This is going to be a quick note as I am at work right now.

    Just wanted to pop in to give our beautiful Sue a massive big hug.

    Oh and I agree with GB, your picture is so ..... err.. can't find the right word but anytime I saw it, it warmed up my heart. It has such a magical power! But I have to admit, I wasn't sure if it was really our Sue. I assumed so but since it looked too nice, I thought that it could be someone who was popular.

    OK gotta go back to work before my boss finds me!

    xo

    Fumi

  • Valsul
    Valsul Member Posts: 160
    edited November 2007

    Sue,

    So now you have your plan.  The epirubicin will make your wee red for a few hours, but they give you meds for the nausea both while you are having it infused and for some days afterwards.  I had my stuff every three weeks, and that all finished in Jan of this year.  But see how the advances go, because they have discovered that every two weeks increases the chances of non-recurrence and where there is even the slightest chance of improvement they implement it right away.

    This is going to be tough - but you are a tough girl.  If I can do it, and I'm a wimp of the first water, this is going to be okay for you too.  Just think, you'll be coming through this just as the first daffodils are nodding their heads in the spring.  You WILL come through to light and love, Sue.

    Do everything your team tell you to do - mouthwashes, drinking water and rest up while your white blood count is low.  Banish sick people from your world, you don't want to pick up any infections you can do without. 

    I had FEC and Taxotere and the Taxotere gave my hands and feet neuropathy.

    Sue, big hug to you for this decision.  Any questions about it have no worries about calling your team and going through it again.  My daughter made all my notes because I was in La-La land trying to deal with the information that was coming my way.Laughing

    Go beat 'em, Sue.

    Valerie S

  • sueps
    sueps Member Posts: 2,266
    edited November 2007

    Hello Everyone xxx

    Well...today I had every intention of going to the wig shop....I phoned them up just to make sure of their opening hours...but it was voicemail....I then went to take some of my strong painkillers....and the anti depressant....half asleep this morning...as I was having a coffee I wasn't too sure if I had taken the pain killers...lol...so I took one more...and have been too floaty all day Surprised  big mistake I know...anyway there was still no answer at the wig shop so I thought I would take some time out of work tomorrow and pop over...which is what I will do...

    However Claudia my breast nurse phone today (remember 'I do not want to be in Claudias' club...but she is so lovely) and I voiced my concerns about treatment etc....and had most of them covered...I had a bit of a sob about dying and selling my car because I wouldn't be around to drive it...all the usual thoughts etc....I always feel so much sadder when I am slapped in the face with appointments and confronting this...

    Well I am a little downhearted since the call as Claudia told me there was no way I would be able to hold down a fulltime job for the next 9 months.... I am sooooooooo down to say the least and more worried about having the treatment ....

    I am going to research the first course of epibrucin every 3 weeks for 12 weeks....and take it from there...Valerie if you could let me know how long the side effects take to wear ooff that would be so great...I know its different for everyone..but I just need a generalisation...

    Anyway I have been spaced out all day which hasn't been a bad thing all in all...lol....I just need to find my fighting spirit...and wish the next months away...

    I will be sad when I lose my hair as I will always wonder if I will be given the time to live and grow it back....I am starting to think my head is abnormal in thought....

    Hope you're all having a good day...

    Much Love xxx

  • sueps
    sueps Member Posts: 2,266
    edited November 2007

    Fumi...thankyou for your big hug..it so warming to know you are out there xxx

    However I do hope you're boss doesn't fire you ...LOL...

    Take Care

    Much Love xxx

  • nowheregirl
    nowheregirl Member Posts: 894
    edited November 2007

    {{{Sue}}}

    I don't know what your job is but wonder why you had to be told that way. As I said before, I haven't even taken a single day off since I was dx'd over two years ago except for fun holidays and when I had an appointment for scans or with my oncologist. Yes I did suffer and there were some days when I wanted to stay in my comfy bed but I managed to work full time throughout chemo. Believe me, I even worked overtime till midnight. In fact, there was no way to quit my fulltime job. I got divorced 3 years prior my dx and my parents are too old and don't have that much $$ to financially support me. Plus my private insurance didn't cover any bit of my treatment due to my medical history (huge crap!!!) nor were there any organizations that would help me with $$. I was totally alone in the financial aspect of this journey but I did it.

    I wonder why they don't even let you give a try to continue working. I have met many women on these boards who managed to work full time. Just because you don't quit your job beforehand doesn't mean you will have to continue working. You could quit it if things didn't work out, right? Of course you don't have to work if that's what you want but having something that keeps you busy helps sometimes. It's all up to you, I never mean to push you to work like crazy. But if you don't want to quit your fulltime job, then it's worth a try?

    As for those "what if's", I know how you must be feeling, poor sweetie. But rest assured you are NOT going to die anytime soon. I personally know a woman who was dx'd with BC mets to her brain 10 YEARS AGO. Mets to brain does sound much worse than deep margins or tumors on the chest wall, doncha' think? So keep your chin up, you will be fine!

    xo

    Fumi

  • portiasproudmom
    portiasproudmom Member Posts: 2,125
    edited November 2007

    Hi Sue.  Sorry for being absent yesterday.  I had my second chemo treatment.  I felt a bit wobbley yesterday, but today I'm feeling a bit wired and jittery from the steroids, but otherwise fine.  Of course, I haven't had the shot from hell yet, so that may all change soon.  I'm hoping the five small doses will be tolerated better than the one big shot.  I swear, I thought I was going to die last time. 

    Try not to worry so much Sue.  I know how frustrating it is when you don't know how ill you're going to be and for how many days (and which days) you'll be down.  Once your plan is in motion, you'll feel better and you'll be able to start your "countdown". 

    Plus, you have us and we love you and are here to support you whenever you need us.

    Love and hugs,

    Karen

  • Lucy1234
    Lucy1234 Member Posts: 289
    edited November 2007

    Just found this picture of my boys in Egypt a couple of months ago.

    Thought you I'd share it with you guys

    X

    See you on the other side

    Poppy

    X

Categories