Starting chemo Sept 05

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  • linny
    linny Member Posts: 204
    edited July 2006
    Susan, I am also feeling, as you put it, more like me again. One problem I am having now is weight gain from hunger on tamoxifen - during chemo I could not eat a thing, and now I am hungry all day. Peggy, I have always been a walker and love it, however I find I cant do it in the summer, too hot and humid.

    A close friend had a very bad reaction to her first herceptin treatment - after a few days, she developed swelling all over (feet, arms) as well as shortness or breath, extreme fatigue (could not go to work) - has anyone experienced this? She is considering not continuing, since she had an early cancer (DCIS). However, it was diagnosed HER positive so herceptin was suggested for her. The doctor has cancelled her next infusion, first she will have echocardiogram (two of them, one week apart) and then see a cardiologist.

    Leanne, thinking of you always, you'll get through this.

    Linda
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  • leannem
    leannem Member Posts: 137
    edited July 2006
    Hi everyone

    Just popping in to say hi and thank you all for your thoughts and prayers. I am off this morning for more chemo at 9am (Friday 14) Australian time. I am really really dreading it as yesterday was my best day in a week and now I am back in more. I am still having a fair bit of pain in my legs, back and neck (naturally am convinced of more mets) and just really don't want to do this anymore.

    Must go get ready and get the kids organised for kindy.

    xooxox
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  • Calico
    Calico Member Posts: 1,108
    edited July 2006
    Linda,
    interesting about the Herceptin. My onc said DCIS is almost always positiv for HER but isn't treated, since not invasive.

    Leanne,
    I continue to pray for you.
    I hope your bone pain is from chemo only. Hang in there.
    When is your next scan?

    Ladies,
    I am reading often, just not posting enough I guess.
    I missed the last vigil by one hour but I am up for a new "date".
    Hope all is well.
    I am having a colonoscopy next Wednesday, what fun...

    God Bless
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  • txred9876
    txred9876 Member Posts: 392
    edited July 2006
    I got the news yesterday. I still am not done with treatment...I still have herceptin (maybe) for a year and tamoxifen for now....

    I have been trying to work some and appear to be TOOOOOO busy!..LOL

    I think of you all often....tina
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  • Calico
    Calico Member Posts: 1,108
    edited July 2006
    Herceptin is good Tina. It will be your friend

    God Bless
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  • foxxf
    foxxf Member Posts: 171
    edited July 2006
    Congrats on the Good news with the ct scan!

    Leanne, How many more treatments are you having? Have they let you know or is it just see how the scans go? We would love to know how you are progressing. Hang in there...we all love you and are here when ever you need us...

    best wishes to all
    Nicole
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  • Liezel
    Liezel Member Posts: 192
    edited July 2006
    What good news Tina!!!

    Leanne, hope the last chemo was not too bad. Thinking of you!

    Peg, good idea about the vigil. cold and rainy in Cape Town at the moment, so I'll light a bonfire with Nicole!!

    Hope everyone is well. Take care...
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  • foxxf
    foxxf Member Posts: 171
    edited July 2006
    Well it was one year ago today that my whole life changed, and what a year it has been. So many highs and lows but the best thing to come from this past year is the wonderful, inspirational friendships that I have made with you all.

    Just think if this hadn't happened to us we would never have met....

    I cherish you all dearly. I couldn't have made it with out you.

    THANKYOU!

    love to all
    Nicole
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  • lynellb123
    lynellb123 Member Posts: 69
    edited July 2006

    I think that many of us are coming to our "anniversaries" as we all started chemo in September. Nicole you are so right to say that this journey has been life changing. I'm with you,and trying to stay positive, the friendships I've made on this board have been wonderful! You ladies have helped me get through a very dark time, you are all appreciated and loved!

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited July 2006
    Hi all!

    I have been good about reading, not so good about posting lately. Life has been busy, and full. The summer music festival season is in full swing. Four weekends I travel to the Berkshires to play at a Choral Festival, and then it is wedding season. So many brides who want string players, outside in August in the full sun. What are they thinking?

    My thoughts are never far from Leanne. She has posted over in recurrance, wondering when 'do you say no.' Obviously, the women over there have thought about this question more than we have. I only hope that her body can tolerate these treatments, and that she finds the strength that she needs to go forward. Of all of us, as she sees her one year anniversary, all she sees is more treatment.

    The friendships and connections we have made in the past year Lynell, have been extraordinary. And how random.... a simple thing like starting the same treatments at the same time have brought us together. I treasure this.

    Our next vigil needs a little more planning time. I missed it, though that night I was lying in a field in northern NH viewing the entire Milky Way, and strangely enough, reflecting on our year and this group. So in a way, I did participate!

    My computer [the work one] has stopped crunching stuff, so I had best get back to work. Take care all.....

    *susan*
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  • leannem
    leannem Member Posts: 137
    edited July 2006
    Hi everyone

    Susan, you worded it so well when you say that as the one year anniversary approaches all I see is more treatment. As genuinely happy as I am for anyone, let alone my wonderful sept sisters, approaches their anniversary I feel sad that I can't celebrate my own. Mine is one of when my life changed so dramatically, of how much I have been through and how much I have left to go through. Sad that I don't have my own positive anniversary rather only negative ones. I pray this changes soon.

    I have been struggling a lot lately about whether to stop treatment or not. It is impinging on my quality of life more than I ever thought imaginable. I am now unable to get up between treatments I am so sick. And that is the good times- otherwise I am just hospitalised. I am not sure how much more I can take. Even sitting here, writing this, it is 6 days after my last treatment and I am still sick. So sick I even vomited this morning twice. 6 DAYS LATER. And I am taking my anti nausea meds. I don't know what to do. I don't want to die. But I hate feeling as though I am going to.

    I really have nothing positive to contribute at the moment and feel bad for always being the sad sack amongst all you wonderful ladies. I have a friend that I made during my AC that has been unable to remain my friend as my mets are her worst fears realised and I guess that I am worried about that being the case with some of you here?? Not for one second has ANYONE of you made me feel like that, it is just something I am very conscious of.

    love to everyone of you and I am cheering all of you on as you celebrate your awesome anniversaries!

    xoxoxo
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited July 2006
    Leanne,

    I can't speak for anyone else here, but I can speak for myself. NEVER do I want you to hold back here. This is your safe place, the place you can vocalize your fears, the place that you can say how LOUSY [or great] you feel.

    When my Aunt was diagnosed with mets and had to leave her apartment in NYC to move in with my family in Boston, her friends just disappeared. They never came to see her, or send her cards, or.... It was awful. My Aunt, who had more grace than you can imagine, found new friends, circled herself with family, and found ways to touch those around her.

    Yea, you are the first one in our group to be dx'ed with mets, and it is all our worst fear, but I for one am not like my Aunt's friends. I know that there is a chance that I am not done with this disease. We all know that statistically, a few more of us will have a second act with BC. And, we are all doing our best to find ways to make our new 'normals' make sense in the face of what we have been through.

    So how is this for a deal? Those of us who have happy anniversaries won't hold back since being NED is something worth celebrating, and you don't hold back letting us know how you are really doing.

    And when they pronounce you NED, I am going to buy a huge bottle of champagne and drink it to your continued health.

    Hang in there.... and take care of yourself.

    *susan*
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  • foxxf
    foxxf Member Posts: 171
    edited July 2006
    Leanne,

    Susan is so right, yes at first your dx was scary as hell for us (worst fears etc) but we also know for the grace of god there go I.

    We are able to see past the fear because we know and love the person that you are. We are stedfastly loyal and determined to be here for you.

    This is your safe haven, tell us the stuff you need to tell someone and can't tell the ones around you daily.
    Please let us share you burden in some way and hopefully lighten the load a little.

    All I can say is fight on...fight to your last breath those boys need you, and we do too!

    Love always
    Nicole
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  • Liezel
    Liezel Member Posts: 192
    edited July 2006
    Leanne,

    I agree with Nicole and Susan. While it is a fear we live with, we care deeply for you and your family. Please don't feel bad or cut off from us. We are all here for you. I just wish I was closer to you so that I could hold your hand during chemo.

    Hang in there. I know you are going through a bad time, but your family needs you and one day you'll look at your grown sons and be thankfull that you stuck with it.

    If you do not want to post on the boards we are all just a PM away and would love to be there for you.

    Love,

    Liezel
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  • hopeful1
    hopeful1 Member Posts: 54
    edited July 2006
    Hello September Sisters! I too have been reading but not posting. It’s been a chaotic summer and I seem to only have the time to ‘pop-in’ once in awhile.

    Leanne – I echo what Susan, Nichole, and Leizel have already stated. Please do not feel that you can’t share your frustrations and fears with us. We’ve all done it in our own times of need – including my big scare a few months ago. This is your time of need – and we are here for you. You are in my prayers daily. Hang in there and lean on us as much as you need to. PLEASE keep posting if you feel up to it – we worry about you when we don’t hear from you!

    I will follow Susan’s Words of Wisdom and share with you all that today is my 1 year anniversary. It’s been quite a journey – and I’m proud to be where I am today. Thanks to all of you for your amazing strength and support.

    Hopeful1
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  • tinkermax
    tinkermax Member Posts: 269
    edited July 2006
    Leanne

    I can only echo what the ladies above say.........we are all here for you, so please continue posting.

    I know you are going thru hell at the moment......but please stick with the treatments, and take it one day, or one hour, or one minute at a time............

    Big gentle hugs to you..

    Maxine
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  • linny
    linny Member Posts: 204
    edited July 2006
    Leanne, we all think of you and pray for better days for you - of course you can say anything here. I found that the most supportive and helpful people during the past year (one year anniversary just passed for surgery, chemo started last Aug. 29/05), besides everyone on this site, were survivors - I was fortunate to know a few women who had been there before me, and they understood and helped me.

    Your comments about your aunt's friends is sad but true - 25 years ago my sister gave birth to a downs syndrome boy (he died at 15 months old) - and her friends totally disappeared!!! It was like they never knew her and she had to go through a very bad time alone (her husband was not very supportive at that time). A couple of them resumed the friendship after the baby died! In any case, we are fortunate to have good people in our lives, and who cares about the other ones!!
    Linda
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  • leannem
    leannem Member Posts: 137
    edited July 2006
    Hi everyone

    Thanks so much for all your reassurances. It really meant a lot. I hope I didn't come across attention seeking or anything, its just I really do understand how hard it can be when your worst fears are realised amongst friends. Thank you again.

    I just wanted to pop in and tell you that I am meeting with the oncologist who is on duty when you get chemo at my hospital to talk about how badly I am suffering. I explained to him that I can never get hold of my onc and I really need to talk to someone. He was a little hesitant as he isn't familar with my case management but I just explained that it was more about me being heard and expressing my concerns to a doctor who might be able to pass all of this along to my usual onc. Anyway, I am heading in there in an hour or so which I am so relieved about. I can't wait for someone to take the time and LISTEN to me.

    Did I tell you about my last 'visit' with my onc? He asked me to come in on the Monday after me going to hospital on Friday. I did. Waited an hour. Then the receptionist said for me to wait for him in another building. Walked over there and waited another hour. Receptionist there phoned him to ask how much longer and he said "I've been in meetings will be there later" (!!!!!!) and hung up on her. Finally he turned up, walked into the waiting room where i was that was full of people, asked to look at my arm (I have 5 superficial bloodclots in my left arm), asked when my next tx was and walked out!! that was it. I didn't get to ask him anything and thought it was damn rude I had to wait 2 hours just for a consult surrounded by others in the waiting room!

    Anyway, after nearly all my visits being like that (he stands in the door way most of the time for a 'consult') and me now really needing some answers, I am fed up and want to talk to someone and find out how normal all of this is. I am having heart palpitations, breathlessness (even a shower or getting the kids breakfast means I have to sit down) and I am unable to get up between treatments. I am doing it tough and figure I deserve someone to listen to me. (did I mention after Scott's fundraising walk we donated a total of $163 000 to my onc's research???) I am fed up.

    that is my little rant anyway. I am off now to make a nice big list of all the things I need to talk about.

    love
    leanne
    xooxo
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  • txred9876
    txred9876 Member Posts: 392
    edited July 2006
    I have been having my share of appointments lately myself so I am getting to this conversation a bit late. The day I got my results of my CT scan, Leanne, you were on the top of my mind. I have not shed many tears during this ordeal. It saddens me that everyone can not get a NED report RIGHT NOW. You DESERVE it! WE all do. You are in my thoughts and prayers every day. I wish there was something I could do to help you....

    Tina
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  • Pegk
    Pegk Member Posts: 389
    edited July 2006
    Leanne,
    I hope your appointment with this other oncologist went well. You deserve compassionate understanding and answers to your questions!
    I am praying that you are through the worst and a more attentive doctor might be able to alleviate some of your side effects.

    Speaking of anniversaries, I just checked the calender, my surgery was a year ago yesterday. What a difference a year makes. Lately, I've been walking at least 20 miles a week and did a 10 mile training walk for the Avon Walk for breast cancer on Saturday. I'm determined to do the full 39 miles in October and to raise as much money as I can for research. (I've passed the minimum and set a new goal) The courage and determination of all of you are my inspiration.
    Love, Peggy
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  • Calico
    Calico Member Posts: 1,108
    edited July 2006
    Dear Leanne,
    it breaks my heart that you don't get the appropriate treatment from you onc. I would call it substandart actually. He is being paid for the visits. A little reminder of your contribution should be in order.

    Needless to say is there a way to switch to another onc at all? I think a second opinion etc. is in order.

    Cancer treatment doesn't only affect the body, but the mind too. The whole YOU should be treated and nicely please.
    I can't believe this ignorance. I saddens me and it ticks me off.

    Maybe the new onc can advocate for you and help you switch? (if you want to of course).

    I pray for you daily Leanne.

    God Bless
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  • Calico
    Calico Member Posts: 1,108
    edited July 2006
    Happy Anniversary Peg,
    time flies when you're having fun

    You go girl, that is a lot of miles. I slacked off lately but you remind me to get my "rear in gear"

    God Bless
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  • sholroyd
    sholroyd Member Posts: 288
    edited July 2006
    Leanne, now listen here, you say what you feel here, it is what we have all been doing and never EVER feel you are the ‘sad sack’ - we all want to support you in any way we can.

    I have shed tears reading the posts today. Yes I am nearing my ‘anniversary’ but like Tina I am still going to hospital every 3 weeks for Herceptin. I have got a bone density scan on Wednesday morning and am waiting for a heart scan also. BUT Leanne when I think of what you are having to deal with, I feel so humble when I get fed up with continuing hospital appointments. I think of you every day and wish I could be near to hug you and help with the boys.

    I still get very scared as I am sure you all do – oh if this thing was just like chicken pox. I am not sure what to say to folk when they ask “When do you get the all clear” – they don’t know what to say when I say “I don’t”.

    I get so cross and disappointed when ‘friends’ do the disappearing act when the going gets tough. I am supporting a friend I made a year ago (in hospital) – she was hit with the news she had bowel cancer and her prognosis is not good. Someone said to me “You shouldn’t keep in touch with her; it isn’t doing you any good”. WHAT!!! You can imagine my reply!

    Well I am now back at work and it is helping emotionally, because it is the holidays I am easing back in ever so gently and don’t feel under any pressure, which is good. We are going to try and get a holiday in the October half term.

    Always in my thoughts – all of you, especially Leanne.

    Sandra from the UK
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  • Calico
    Calico Member Posts: 1,108
    edited July 2006
    Quote:

    Well, I hope you all had a very happy Mothers' Day - as mothers yourselves, or grandmothers, or daughters.
    Cause for celebrations indeed!



    Where is Michelle???

    She hasn't posted in almost 2 months???!!!
    Hope all is well!!

    God Bless
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  • sholroyd
    sholroyd Member Posts: 288
    edited July 2006
    I just logged on to ask the same question - how can we find out about Michelle?

    Hi all, Hi Leanne (hugs).

    Sandra from the UK
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  • txred9876
    txred9876 Member Posts: 392
    edited July 2006
    Things in my life are starting to move along....but...

    my occupational therapist found a red spot from the back of my armpit toward my spine (not big...but not small either). Since she has been seeing the area twice a week for a month it alarmed her. It is also warm to the touch. I pray it is nothing, but I know if it is....everything will be ok no matter what. I have a normal follow-up with the oncologist on Thursday so will just monitor it until then. Inflammatory is a NASTY form of this disease (it comes back in over 50% of the cases ...so I kind of hoped for the best...and still do...but have always prepared for a FIGHT!)

    Leanne,
    I am going to keep on fighting and so are you....we are MOMS and we know what we need to do for our kiddos! Keep a positive attitude...find the one sliver of the silver lining in the clouds....

    Tina
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  • foxxf
    foxxf Member Posts: 171
    edited July 2006
    I am going to get in contact with the Sydney News paper. They have a section were you can try to contact people you used to know. It's called Searching. I will put an ad in saying:

    Aussiemum/Michelle, all your sisters at Breastcancer.org are missing you. Please log on soon or contact Nicole on Ph: to let them know you are O.K.

    We will see if that flushes her out. Some people like to put the whole thing behind them when they get the NED. Like pretending it never happened sort of thing but I wouldn't think Michelle would be one of them so I will give the ad a try.

    Let you know how I get on.
    Nicole
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  • Calico
    Calico Member Posts: 1,108
    edited July 2006
    Nicole,
    that is sweet of you. would be nice to hear from her again, I don't think she would just leave like that.

    Tina,

    I will pray for you...sheech...that must be so scary.
    Good luck with the onc visit.

    God Bless
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  • leannem
    leannem Member Posts: 137
    edited July 2006
    Hi

    Just a very quick one.

    I have contacted someone from another chemo group that used to be in regular contact with Michelle and have asked if she has heard from her. Unfortunately not but she does have Michelle's phone number and is thinking of giving her a call. I have urged her to do so since so many of us are worried about her and will let you know if I hear anything.

    Will update soon
    xoxoxo
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  • Paula15089
    Paula15089 Member Posts: 373
    edited July 2006
    Ladies,
    I am the one Leanne contacted re Michelle.. I am worried, we used to be in touch quite a lot, but i haven't heard from her whatsoever for ages. It looks like she hasnt been on a website since i havent even got a read receipt from her afer sending her PMs.
    I will find her phone number and give her a call today.
    I'll let you know how it goes! Keep your fingers crossed.. Lets hope she is just busy with kids etc..

    take care
    Paula
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