Starting chemo Sept 05

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  • foxxf
    foxxf Member Posts: 171
    edited February 2006
    Just got my start date for rads, 2nd March which is only next Thursday so looks like i am off to Sydney for 6 weeks.

    Hope you are all well
    Nicole
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  • marg1
    marg1 Member Posts: 73
    edited February 2006
    Hi Everyone, sorry I haven't posted, I have kept up by reading but not posting. My fingers hurt so bad due to taxol its hard to type. I had to take a 20% reduction on the taxol becuz of the neuropathy had gotten so bad. I did 9 out of the 12 at full blast -- I just worry that I did not get the whole full effect for my last 3. Oh well, my onc said that I had to have a quality of life after chemo. It was so bad that I could not even button a shirt or write with a pen. I am an RN and I start IV's for a living so I am hoping that this is not a permenant situation. Next week is my last taxol for me and my PICC line in my arm is out!!!!! I cant wait. Then I will be doing a MUGA scan to see what that is at. My last one was at 70% -- heres hoping I am still up there.

    Tina -- sorry about the 48%, I have read other posts that they stop the herceptin for a while until the heart recovers (and it usually does) then they start you back up again. I will pray for u.

    Peggy -- your so cool, starting all these threads, you started this one and the taxol one which I also post too. I never been to New York -- Maybe I will make it out there-- hey you never know.

    By the way -- my mojo is back !!!!!!!!!!!!!!

    Hope everyone else is doing great. Marg
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  • leannem
    leannem Member Posts: 137
    edited February 2006
    Hi all

    yay about the mojo marg!!! Half your luck! Here's hoping it kicks in here soon.... Not so great about the neuropathy though. I agree with your oncs words, quality of life post chemo is sooo important and I am sure you got some fantastic effects of it all. Fingers crossed for the MUGA.

    Tina, sorry also to hear about the problems you are having with herceptin. Did you have any palpitations, etc to give you an idea this was going on? Sorry if you have already gone into it all... chemo head here!

    I had my planning appt for rads this week and am all ready to go 13 March. I just want to dive in and get this done!

    I went to Look Good Feel Better today (do you all have that program where you are?) which was good. What a fantastic makeup goody bag!! I was approached to maybe start doing some public speaking so fingers crossed something comes out of that. I think that is an area I would like to get into.

    No other real updates here. Kids are great and I am flat out as usual!

    love to you all
    xoxox
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  • txred9876
    txred9876 Member Posts: 392
    edited February 2006
    I have been pretty tired through all this and there was no warning that my heart function was so low....24% is very low in fact. They are going to do an echo (ultrasound of the heart) which will tell more then the MUGA scan. All the MUGA does is tell you the output pumping ability of the left ventricle. The MUGA is very accurate and a test that can be reproduced that is why they use it in determining some of the drugs. I was started on one heart medicine monday and will start a second one in two weeks when I go back to the heart doctor for the results of my Echo.
    They are not sure if I will ever have anymore chemo at this point or if they just need to wait for my heart to heal. Since it dropped so low there may be some permanant damage. They are going to monitor me very close for the next 6 months and probably monitor me for life. The only problem with any medicine to help your heart it tends to lower your blood pressure and mine is already at a very good lower level...normally like 108 over 70. The new meds kind of made me a bit dizzy but they warned me that might happen until my body gets used to it.

    I am trying to take it easy but did go to the office for a few hours this week....I have to have something to keep my mind occupied!

    Tina
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited February 2006
    Nicole, Mixed emotions... on the one hand want to get this treatment done and behind you, yet so much time away from your family. Were you able to arrange staying with your sister? I do hope that you have, so that you are surrounded by people who care for you.

    Marg, so good to hear from you. I do so hope that your neuropothy is short-term. How are the children doing? And bravo on the MoJo!! Some things are looking up for you!

    Leanne, don't know how you manage with such young children, and an absent father, but it sounds as though you might have had a break in the clouds.

    Tina, this heart thing is totally scary! I am not surprised that you slipped into the office though. You want to be back to work sooooooo much. Keep us informed.

    All the best,

    *susan*
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited February 2006
    So I keep learning things. Some things, such as the mathematical formula for determining the record count in a set, probably won't interest you. Finding my new normal, might. So I will jump to my new normal.

    My surgery was a partial mascetomy, with a sentinel node biopsy. They removed four nodes. I would estimate that a third of my breast is gone. And, unfortunately, my sentinel node was very deep, so the surgeon had to go in farther than she would have preferred. My surgery was mid-July.

    At the end of radiation, my upper right arm still tingled, I had lost some of my reach, mobility and strength, and certain motions gave me pain under my armpit. The incision area on my breast was still achy whenever I stretched or reached too far.

    Four weeks post-radiation, it wasn't really getting better. Now I am not talking dehabilitating pain, or gross motor skill loss, but enough that I was changing my routines. I would reach for dishes on the shelves with my left arm, instead of my dominant right, for example.

    Well, one day I said "I am only 47 years old. I can't let this go." I have started seeing a physical therapist, and it has been fabulous! He estimates that I was at about 95% when I started, and I am now up to 99% in three sessions.

    Unfortunately, my insurance doesn't pay until I have spent $500 out of pocket, but it is totally worth it.

    Next week, when we head out on our trip, I am going to be able to carry my own bags, I am walking upright again, not hiding my breast, and I can reach the pickles in the back of the refrigerator.

    Anyhow, this is just for anyone that is having some mobility issues, not a mandate by any stretch of the imagination. There is hope, and there are people who are trained to help you recover from this journey.

    Take care,

    *susan*
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  • txred9876
    txred9876 Member Posts: 392
    edited February 2006
    That is great news Susan...I have used my arm a lot and have most of my use of it but it does get tired when I am not careful I had a bilateral mast with 9 nodes out on the left side.

    Looking back over my decisions of the past many months I am so glad that I opted for a bilater mast. Especially without being able to take more chemo or the herceptin at this point. My surgeon was able to get good wide clean margins and I am very grateful. I am still a bit worried about this heart thing...for example I went to a court thing I had to attend today and had to walk from the parking garage to the courthouse (maybe 3-4 blocks) and it was no more then the mid 40's. By the time I made it to the entrance and metal detectors I was out of breath and caughing enough I had to use my inhailer (I also have had asthma for years). I recovered within about 5 min but omg...I am only 36...this has got to get better!
    I love being a realtor but have been faced with a huge delima....if...I go back to work in my former profession (computers...network administrator) for the state of Texas. Their health insurace will take ANYONE even with a pre-existing condition during thier initial month of their job. They pay for the employees coverage and 25-50% (I cannot remember) of dependents. My boyfriend who has been so wonderful through all this has had some very bad back issues (and has for several years). He got diagnosed with Ankylosing spondylitis (arthritis of the spine...your own immune system attacks your back). He has not health insurance and the medicine he needs to take is almost 1400 a month. Now we can solve the medical issue for both of us and finally get MARRIED! My former boss is now working in Austin instead of San Antonio and he said there is a position coming up in the next 60 days. He wants me to work with him again and he said he would work my schedule around any remaining doctor appointments! This could be a win -win- win situation....

    SOmetimes...there is a silver lining out there...you just have to find it!
    Sorry for the long post..
    Tina
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  • Pegk
    Pegk Member Posts: 389
    edited February 2006
    Marg,
    Great to hear from you. The end of chemo is in sight. Good for you!

    Nicole,
    I'm glad you're finally getting your rads started. It won't take up much time in your day, so I hope you can find some fun things to do in Sydney. Will your family be visiting? I hope the time will fly. I'm down to my last 3 treatments out of 34, so I can assure you, you will be counting them down in no time.

    Same for you, Leanne.
    Get those rads started and get them over with. You will be an inspirational public speaker.

    Susan,
    I'm glad therapy has worked on your arm. Have a wonderful time on your trip!
    Paris, right? I'm so jealous. Will you be writing your experiences on your website? I check in periodically.

    Tina,
    That job offer sounds very encouraging for your health issues and your family issues. If you enjoy the work and like your boss (he certainly seems to like you), go for it!

    I hope all of you September sisters are doing well. You are all in my prayers.
    Love,
    Peggy
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  • foxxf
    foxxf Member Posts: 171
    edited February 2006
    Marg, my neuropothy was so bad I could hardly walk and my fingers hurt to type as well. They had to stop my Chemo with 2 tx to go. Just telling you this because my last tx was 9th Dec and now it's mostly gone.

    I can't wear no shoes outside the uneven surface is terible and my hands in hot water is still not good but besides that I am happy with the way it has settled down. So there is hope for you, I will pray for you.

    Susan, so glad your physio is helping, I have to go about every 6 -8 weeks to have the lymphodema in my upper right arm massaged out. What a huge difference it makes.

    My family will be coming down to Sydney for two weeks during my stay. We have lots of adventures and outings planned for the kids, so much easier that I am staying at my sisters house.

    I am trying to organise work while I am in Sydney or I am going to be bored out of my mind. I sell glowsticks and L.E.D flashing novelties at Concerts and special events. I am currently negotiating to have a stall at the U2 Concerts in Sydney. so that will keep me busy.

    Best wishes to all
    Hope you are all well
    Nicole
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  • Liezel
    Liezel Member Posts: 192
    edited February 2006
    Hi Everybody,

    Sorry about the MIA. Had some computer problems this side.

    Had my last Taxotere today - Hooray!!!! Had brain scan afterwards because of bad headaches lately, but all fine there.

    Will catch up again on Monday after I have read all your posts!! Keep well - I am going to celebrate now!!

    Look after yourselves....

    Liezel
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  • sholroyd
    sholroyd Member Posts: 288
    edited February 2006
    Tina – I am also rooting for you.

    Peg – I have visited the link thanks and made a posting – te he.

    Marg – glad you mojo is back ;-) Enjoy.

    Well I have been absent. I developed a cough/cold, maybe from my daughter who lives with us, then my temperature shot up. I have been hospitalised from Sunday to last night. I was allocated a side ward as I was semi-isolated, comfy bed and I slept well (for a change). Had to have strong antibiotics (which sometimes cause you know what down below, and yes it did). Well I am OK now and still smiling. Just a bit miffed as I was saying how pleased I was cos for the first time since this started I had NO hospital appointments this week – shan’t say anything in future. My daughter said "sorry for making you poorly mum" - had to reassure her I could have picked up the bug anywhere.

    On the bright side I have my penultimate CMF on Tuesday – if they can find a vein – my hand is very bruised from antibiotic drip – had to change cannular 5 times as it refused to work – think my veins now do a runner when they see a needle. I am going to wrap my arm in a hot water bottle for Tuesday to see if this helps?

    Now I have a little hair growth (and I get very hot) I have taken the plunge and walk around the house without my hat – thought it might slow the hair growth down keeping hat on all the time!? Are you impressed Michelle?

    But as I said I am still smiling and feeling positive.

    Got my sorting out date for rads on 24 March.

    I have received a letter about going for a heart check with regard to taking Herceptin - so it seems I am at least being considered for this - don't think there will be a problem with NHS funding (I hope).

    Have a good weekend ladies.

    Sandra from the UK
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  • Pegk
    Pegk Member Posts: 389
    edited February 2006
    Nicole,
    It certainly sounds like you'll be making good use of your time in Sydney. A U2 concert! What fun!

    Congratulations Leizel, on finishing Chemo! Good news on the scan! What are you doing to celebrate! What's next for you? Keep us posted!

    Oh Sandra,
    So sorry you had to be hospitalised. I'm glad to see your on the mend and heading into the home stretch! No more problems, okay? Good luck with herceptin and rads.

    So September Sisters,
    I'm really in the home stretch now-2 rad tx to go!
    I've gotten my work schedule for next week. I'm working Tuesday, Thursday, and Friday, so my last tx are Monday and Wednesday.
    Strange, you might say, but I especially wanted to go to work on Tuesday, which is Mardis Gras, Fat Tuesday.
    If you've read any of my posts on different threads you might know that I got married in New Orleans almost 20 years ago when my husband I were traveling with a show. We've had a soft spot in our hearts for New Orleans ever since. I've never been to NO for Mardis Gras, but we have a party every year, which we're celebrating later on today at my neighbor's house, because my kitchen is still under renovation. We're making gumbo, muffaletas and I ordered several King Cakes from bakeries in Louisiana-one for our party, one to bring to work, and one each for my onc's office and the rad center.
    My first chemo was last August, as the water was coming over the levees, so to me, the fact that New Orleans can go on with their celebration and I can go back to work, is a symbol of hope and recovery.

    Laissez les bon temps roulez! Let the good times roll!

    Peggy
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  • tinkermax
    tinkermax Member Posts: 269
    edited February 2006
    Hi everyone

    I had the results of the bone scan....ALL CLEAR!
    Even thou I had requested the scan as a baseline, it was still a huge relief.

    I have an appointment with a gynaecologist on Thursday to get my ovaries removed...I hope it all goes well and he can get me in asap,for the operation.

    I want to get back to work as I have been off since May.

    Sandra
    good luck with your chemo on tuesday, I will be thinking of you.

    Peg
    Two more rads to go....that must feel great, the finish line is in sight for you.

    Are any of you ladies taking tamoxifen, or an aromatose Inhibitor? If so , which one, and have you had any side effects?

    After my ooph, this will be the next plan for me, hopefully I will tolerate arimadex as well as I tolerated chemo.


    Wishing all you ladies a great weekend.

    Best wishes

    Maxine
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  • manos
    manos Member Posts: 117
    edited February 2006

    I have invasive mammary with both lobular and ductal features a small forcus of dcis.ER Postive Pr positive, HEr/neu 1+ one node taken clear.margins clear 3Millmeter of IDC The size of the tumor cannot be accurately determined form the pathology spec, but was probably less than two centimeters.Ok, that is what some of it says. I just finished six weeks of rad. I had a lumpectomy. I went to see my med. onc. and he said if it was any other doc. they would recomend chemo. He said he would leave it to me. He said since there is confusion on how big the tumor was (which I don`t get) that is why someone else would recomend it.Can anyone help me? I know I am in a good place and doing all I can to not have it reoccur. I see him the 8th of March and I am at a loss. Thanks. Rachel

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  • sholroyd
    sholroyd Member Posts: 288
    edited February 2006
    Rachel. Big decision I know but personally I see Chemo as a kind of extra insurance along with radiotherapy etc.

    What do others think?

    Sandra from the UK
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  • leannem
    leannem Member Posts: 137
    edited February 2006
    Hi Rachel and welcome

    I am with Sandra- i look at chemo as extra insurance. I figure I can't through enough at this beast so bring it on! Especially because they can't determine the size of tumour (why is this do they know?? And if they don't know size, how are they sure they got clear margins?? Sorry- I may just be ignorant here!) I would go for it.

    Such a personal choice though.

    No real news from me at the moment. Just trying to get some headspace to deal with problems at home but healthwise am holding up well thus far.

    xo
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  • manos
    manos Member Posts: 117
    edited February 2006

    I am sorry about your problems at home. I know that is tough at this time. Thanks both for your advice. This is also an expensive choice and it has been so thus far. I did not know this whole time about the size problem until I went to med. onc. two weeks ago. The surgeon rad onc. no one said anything. The surgeon said I had clean margins. I just don`t know.I see him and will be ready for questions the eighth. He was wanting me to know by then but I can`t.

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  • manos
    manos Member Posts: 117
    edited February 2006

    I just looked at your home site Leann. You have been through it. What beautiful kids! You are too. Take care.

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  • Pegk
    Pegk Member Posts: 389
    edited February 2006
    Hi Rachel,
    If you have any doubts, I think it would be valuable to get another opinion. My first instincts at the beginning of my journey was to avoid everything. I think I was in denial.
    Others plunge right in and do the most aggressive treatment possible-bilateral mast, the most aggresive chemo and rads.
    Fortunately and unfortunately, we are given choices. Hopefully, you have a medical team you can trust. Do you have insurance? Is that part of the problem? I hope that you don't have to make your choice just on cost.
    But if you do choose chemo, know that you'll get through it just as the rest of us have.
    Best of luck to you.
    Peggy
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  • Pegk
    Pegk Member Posts: 389
    edited February 2006
    Hey Maxine!
    Congratulations on the good results of your bone scan!
    Good luck with your ooph. I hope you get through that without incident.

    I have been on an AI (Arimidex) for almost 2 months now and have had minimal side effects... I occasionally feel a little sluggishand achey when I'm in one position too long, sitting down for dinner, a long car ride, and especially over night. Once I start moving, I'm fine.

    Meanwhile...counting down... I had my next to last rad treatment today, I'm going to work tomorrow for the first time in 7 months, then my last treatment on Wednesday! Yahoo!
    One frustrating bit of news... I also had a check up with my med onc today. She says I'm doing great, she doesn't need to see me again for another 3 months, but she wants me to keep my port in for another year!
    Not that anything is going to happen she says, but if it does it will be in the first year. That means I have to go back every 4-6 weeks to get it flushed.
    Oh well, I guess I can put up with it for a while longer.

    I hope you are all doing well.
    Love Peggy
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  • manos
    manos Member Posts: 117
    edited February 2006

    Yes the money is a huge issue. He has put out so much and so not happy about it. I feel so guilty. I want to do what is best I am young 55 and very good shape. I work out and eat very heathy. I have the most beautiful grandkids in the world and my kids adore me. I am so very blessed. They would be sad if I was not here. So that is a big factor. I have been in denial until he told me this. Thanks so much.

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  • manos
    manos Member Posts: 117
    edited February 2006
    By the way I wish I could hug all of you.
    All I wish good health and happiness.
    Blessings to all of you.
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  • Liezel
    Liezel Member Posts: 192
    edited February 2006
    Hi Everybody,

    Sorry I have been missing for so long. I have had some mayor computer problems, but hopefully they are all sorted out now.

    To catch up - I had my last Taxotere treatment on Friday, but had to go for a brain scan immediately afterwards because of severe headaches the last few weeks. Scan turned out fine though!! My GP seems to think the headaches are just from a build up of toxins, and should pass within the next few weeks. In the meantime, I am taking some Milk Thistle to help my liver clean up!

    What is next for me? I am having an auxila dissection done on 10 March, and radiation should start as soos as I have healed from that. Not too sure exactly how many I'll be getting. In the meantime, my Medical Aid has declined our request for funding of Herceptin. This is the largest Medical Aid Company in South Africa, and a few of their clients are now taking them to court. We have decided to join them in the action, and in the meantime try to get the funds raised for a 9 x weekly protocol. According to my onc. new trials have shown that this might be as effective as the year long protocol. We hope so. Our plight has been in the news a lot for the last few weeks, and last week the Medical Aid Company released their results - 73% increase in profits!!! You can imagine the outcry!

    On the work front, my business partner has decided that she can do better if she works by herself from home. It has actually been a big relief and has taken a huge amount of pressure off me. I now work at my own pace and is actually enjoying it again.

    I hope you are all doing well. It is going to take me a while to catch up with all the news. Have missed you all!!

    Keep well all!!
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited March 2006
    Peg, all done with radiation? And headed back to work? Congratulations!!!!!!

    Tina, this is a hard decision I suspect since you seem to really love your new real estate career. But health insurance, marriage and the proverbial white picket fence might be hard to pass up.

    Sandra, hope you are feeling better by now. You have had way too many hospital visits! Will think of you on the 24th as you start the next phase of treatment.

    Manos, if I were making the decision, I would go with the most aggressive treatment available. I wasn't given a choice, and can't imagine how hard this must be for you.

    Maxine, CLEAR! That is a musical word. So pleased for you.

    Liezel, glad that you have worked something out with your business partner. This relationship sounds difficult, and is probably complicated. Good luck advocating for the herceptin. These fights take energy, but it is clearly the right thing to do for both you, and the women that will follow.

    I am leaving for France in about 6 hours! I am all packed though I am still deciding between two jackets for some of these family dinners. I have lost 20 pounds now, and everything hangs loose. But, we are now sitting on that precarious line between poor and broke, so no new clothes right now. In fact, it is ridiculous to be taking this trip, but how was I to know in October when I cashed in those frequent flier miles?

    It doesn't matter though. This trip has been the carrot at the end of the road. While we are in Languedoc, I am going to visit a woman who posts on the mets board. Of all the things to bring from the states, she wanted a pair of stonewashed denim overalls. And so that is what I am taking!

    She is my age exactly, and has not yet met anyone else with this disease. We are going to sit in the sunshine, eat cheese, drink wine, and admire our 1/2 inch of hair! I only hope that she is still well enough to enjoy our visit.

    I am bringing a computer, and if I manage to get wifi access, I will post some pictures so you can travel along with me.

    Take care all....

    *susan*
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  • manos
    manos Member Posts: 117
    edited March 2006

    How I appreciate all of you. If something good has to come of all this it is all of you......

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  • lynellb123
    lynellb123 Member Posts: 69
    edited March 2006
    Hello my September Sisters, I haven't been posting here as I've been finished with chemo since Dec. I have been reading and keeping up with everyone's progress and I am so pleased that we've come so far.

    I finished radiation yesterday & am waiting to see my onc. for a 3 month check-up on Friday. I believe he'll start me on tamoxifen as that was the original plan. Well, I'm happy to be getting to the last part of treatment...as one of my sisters & Jerry Garcia said...what a long, strange trip it's been! (That was Jerry that said that no?)
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  • tinkermax
    tinkermax Member Posts: 269
    edited March 2006
    Hi everyone

    I went to see my gyn today, and he is fine about taking my ovaries out.

    I get them removed 2 weeks today.........yippee

    He will do it thru my belly button.

    I will let you all know how it goes.

    Take care everyone

    Maxine
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  • leannem
    leannem Member Posts: 137
    edited March 2006
    Hi all

    Great news about the ovaries Maxine. Looking forward to hearing about it all going well!

    My ovaries are still all over the shop! I have now been referred to gyn oncology re: my cysts. I have to head off for a abdominal and pelvic CT scan and chest xray next week and then see the gyn onc. I am hoping they are just being over careful. No one has indicated they look like anything but cysts but I guess it is nice to have all my bases covered.

    That is me for now- sorry so brief and impersonal it is bed time here at the zoo for my little monkeys!!

    xoxo
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  • sholroyd
    sholroyd Member Posts: 288
    edited March 2006
    Hi all

    Thoughts to you all with the varying problems that seem to arise - it is a real shame that cash has to come into the decision making process.

    Maxine - thoughts for 2 weeks time, please let us know how you get on,

    I am doing OK at the moment - only 2 hospital appointments next week - Warfrin Clinic (cattle market I call it) Monday and FINAL CMF treatment (yeah) on Thursday. I have been advised to have 5 days of GSF injections (or something like this) after final treatment – think it is to get my white blood cell count up to avoid any more infedctions??

    I have just had to break off to take a phone call. Once a year 4 ladies (including me) take off to London for a weekend theatre trip. When we went last it was 2 weeks after my mastectomy – yes I decided to go and thoroughly enjoyed Billy Elliot. When we got home on the Sunday evening my friend’s husband had a massive heart attack and didn’t make it. This same friend has just told me she went back for results today following a mammogram – you can guess the rest – life is such a BIXXX. Apparently they have caught it very early and she will get away with just radiotherapy – but we all know how she is feeling right now. Why is this thing so common and seems to becoming more so????????

    Anyway another friend in the above group wanted to shave her head to raise money for BC – I insisted she didn’t. She wouldn’t let up and decided to do a boogie-bounce last Saturday – she put a lot of effort into this, getting other people to ‘bounce’ and has raised over a £1,000 – I have got a lot of non-toxic friends I am pleased to say and something like this certainly separates toxic and non-toxic people.

    Sorry – the phone call has put me on a downer.

    Sandra from the UK
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  • tinkermax
    tinkermax Member Posts: 269
    edited March 2006
    Sandra

    Im so sorry to hear about your friend, seems like everywhere you look someone has breast cancer.

    Im so pleased you only have one more chemo to go, I hope it goes well for you.

    Leanne

    Good luck with your scan and x-ray, it is always a worrying time when we have tests. I dont think that will ever change for us now, we will always worry, im praying your results are as good as my bone scan was!

    Have a relaxing weekend everyone

    Hugs
    Maxine
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