Starting chemo Sept 05

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited March 2006
    Maxine, I am so pleased to hear that your recovery has gone well. Anytime you head into the hospital, it seems like a crap shoot, doesn't it? Anything else major in store for you in the near future?

    I learned Friday that my genetic tests were negative, and so I am not choosing to have an oopherectomy. Also takes double mastectomies off the table. Three surgeries, POOF!

    Who else is on an AI? I am on Aromasin, and the side effects are a moving target. This week the bone pain is severe, and I am totally and completely fatigued. My feet continue to peel like when I was on chemo. Why couldn't I have gotten the "loss of appetite" side-effect?

    Thinking of you all.....

    *susan*
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  • Pegk
    Pegk Member Posts: 389
    edited March 2006
    As I was walking up Broadway to work this morning, I was thinking about what Sandra wrote about coordinating our thoughts of encouragement to Leanne. I think it's a great idea. I googled Time Zones and was able to find out what time it was in many cities around the world.
    This is what I found out:
    When it is midnight in London: NYC is -6 hours or 6:00pm
    LA is -9 hours or 3:00pm
    Johannesburg is +1 hour or 1:00am
    Sydney is +10 hours or 10:00am
    Of course, next week Daylight Savings Time begins in many places, and that could change things a bit, but does someone want to pick a time this weekend to coordinate our mental efforts?

    Good luck with your radiotherapy, Sandra and I hope all goes well with your scans.
    Peggy
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  • Calico
    Calico Member Posts: 1,108
    edited March 2006
    Susan,
    I am on an AI, Femara, so far so good. Little more hot flashes but manageble.
    Aromasin is steroid based, so hunger might be in your future

    Peggy,
    I love your picture!
    Nice thought about the time zone, now I know too. I am 8 hrs behind Leanne.

    Maxine,
    you are so patient, I would have run into the hospital by now demanding the results I'm glad you are doing well.

    Leanne
    I am thinking of you and praying daily. Hang in there and let us know how you are doing!

    I ran my trail today (5 weeks postop) and I am only 5 minutes shy of my best time. Running and hiking makes me feel better...

    God Bless
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  • Pegk
    Pegk Member Posts: 389
    edited March 2006
    Maxine,
    I hope you get the good news you've been waiting for soon. I'm glad your recovery is going so well.

    Susan,
    It must be such a relief to get those results from your genetics test. Did you request it or was it suggested? My doctor has not indicated that I should get it and I'm wondering if I should demand it.
    I am in my 3rd month of Arimidex. My symptoms haven't been too bad. Occasionally when I wake up in the middle of the night, my hands and wrists ache. Once I flex them, they feel better. When I get up in the morning it takes me a minute or two to make my feet move. I feel like I'm 90 years old! I need to hold onto the wall to get to the bathroom, but once I start moving, I'm fine.
    That's why I make a point of walking as much as I can during the day.
    From other threads that people have written, it seems as though the different AIs affect everyone differently. You are in a trial, right? How long do you have to stick with it? Can you change it if it's giving you problems?

    Take care, everyone!
    Peggy
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  • linny
    linny Member Posts: 204
    edited March 2006
    Hi everyone,
    I finished chemo in Dec. and have been on tamoxifen for three months - my eyes are bothering me - red and sensitive for the last couple of weeks. I will see the eye doctor Friday. Anyone else with these symptoms.
    Linda
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited March 2006
    There is hardly a day that goes by that I don't think of Leanne. How I wish that I was rich. I would send her cash to pay a mother's helper to come in the afternoons to help with the kids, house and to start a nutricious meal. I think every woman with this dx should get this service if they have children under the age of 12, to be honest. Of course, I think we should all have guaranteed health care too. Such a utopian I am! Are you thinking that we would assign ourselves specific times for positive thought?

    Peg, the genetics testing was recommended. My aunt was dx'ed with the same breast cancer as me at age 36, my sister was dx'ed with ovarian cancer [which turned out to be borderline], and finally the only two women in 3 generations who had not had a hysterectomy before menopause ended up with breast cancer. There was only a slim chance that this test would be positive based on this family history, but slim isn't none. I am totally relieved to not be looking at any more surgery. Now I am getting stronger, to get stronger. Not to get stronger so they could slice and dice some more.

    As to the AI, of course I could switch or stop, but for now, I am going to persevere. I keep an eye on the side-effects, and notate them. I can't imagine someday in the future, if this beast returns, not being able to say I did everything I could.

    Linda, I have lost some of my eyesight, but no redness. In fact, that reminds me that I need to make an appointment to get new prescriptions.

    Well, I had best use my short energetic window to actually produce some work for my clients!

    *susan*
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  • sholroyd
    sholroyd Member Posts: 288
    edited March 2006
    Peg – how about midnight for London? – I will set my alarm and wake up especially to send all my best thoughts to Leanne. Doesn’t bode well for Johannesburg at 1.00 am. I don’t mind, quite happy to fit in with everyone else – I will set my alarm for our Leanne whatever the time. By the way your hair looks wonderful Peg – I am quite pleased with my slight hair growth, feels baby soft, is coming through even and no grey bits so far. I can’t wait to get my eyelashes dyed black again - I am blond and look yuk without dye on my eyelashes and mascara just ends up all round my eyes making me look like I have had 2 rounds with Tyson.

    I had MRI yesterday on my heart – kept my eyes closed, listened to the relaxing music they gave me and mentally put myself up a mountain in Wales on a nice sunny day (visual relaxation). It must have worked cos it didn’t seem so bad as I had been led to believe. I am getting quite good now at ‘switching my head off’. I also will put this out of my mind until such time as I receive a letter or an appointment to discuss findings and find out whether I am able to receive Herceptin or not.

    Susan I am sorry to read you are having a tough time right now; my thoughts are with you also. Susan I filled out a genetic form but haven’t heard anything yet. My mum had one sister who had BC 16 years ago (still alive). My mother died early with skin cancer so will never know if she would have had BC, her mother fell downstairs at 48 and died. There was another female relative on my mother’s side who had BC but I couldn’t find out much about her. There are a lot of males on my mother’s side. I do worry for my 2 daughters.

    Maxine, glad to hear you are on the mend. When I was investigated down below, I just got a letter ‘no further treatment required’ so here’s hoping you get the same result.

    I had my first radiotherapy appointment today. All very kind and it was much better than going to have needles stuck into veins that didn’t want to be found. I am still bothered that I am only having 15 sessions when others seem to have more?

    My friend who had a lumpectomy and who was told she only needed radiotherapy has had her post-op appointment with Onc. Her C was ‘upgraded’ to a 3 and she had 3 lymph nodes affected. She has now been told she is to receive FEC for 6 months – she is in the stage ‘can’t believe this is happening’. Any tips for her on FEC?

    I am hopefully going back into college after 13 June for odd days. I will be doing part-time in the new academic year. Personnel Manager and my line manager appear to be being very supportive. I am just a little cynical; as I have seen some of the tricks they have pulled in the past. However, for now I will believe they are being supportive of my problem.

    Being took out for a birthday meal tomorrow evening by some friends – My birthday is Saturday and hubby hasn’t said anything about taking me out – he is very supportive but was definitely at the back of the queue when romance, how to give a surprise, pamper the wife was dished out ;-).

    So ladies when are we all going to meet up to send our very best of thoughts to Leanne?

    Sorry for my usual long post ;-)

    Sandra from the UK
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  • leannem
    leannem Member Posts: 137
    edited March 2006
    hello my lovely sept girls

    Thank you so much for your positive thoughts and prayers and this organising a time!!! I will be sure to put myself into a nice quiet spot to be able to receive all the blessings. I am so touched you guys would go to the effort to do this it makes me cry!!

    Well yesterday's chemo has really wiped me out like never before. To the point where I nearly had to be carried to bed at 7pm and couldn't stop crying from the pain. I cried most of the night and am very teary today as well. The pain is a little less- I was able to get up and dress the kids for school but a friend had to come and drive them as I just wouldn't have been able to make it. It is very tough this round- not just this physical stuff but the mental. I have ALWAYS been able to just 'get on with it' no matter how bad I feel and now I just can not even move. Really destroying stuff. It is as though by not being able to force myself to get up and do things I am admitting I am sick. So very hard.

    I kept having nightmares about the chemo not working and I was dying. I was just watching it all. So sad. Of course now I am paranoid that my body was trying to send me a message....

    I will write more when I am feeling better.

    Thanks again ladies I can't express how much all of your support is helping me through this

    xo
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  • Liezel
    Liezel Member Posts: 192
    edited March 2006
    I'll set my alarm for 01 am anytime! My son has been waking up a lot during the night lately, and I spend the time while I wait to fall asleep sending healing thoughts to her and all of you.

    Linda, I suffer with the red, itchy eyes as well. I also suffer from constant headaches. I saw an eye specialist yesterday, and he could not see any reason for it, so he presumed it is a side effect of the chemo. There is however a "flat freckle" at the back of my right eye that he believes is benign but will keep an eye on for the next month. He also wants to see my brain scan because he did a "line of vision" test and he is not happy with the results. I have no idea what all of this means. Will have to google it first. Let us know what your doc says.

    Susan, good luck with the AI.

    Sandra, I had 4 x FEC. It really was tough compared to the Taxotere. I was in bed for about 4 days after tx. Fatigue and nausea, apart for the hairloss was the worse side effects. Good luck to your friend. She is lucky to have someone who can assist her on her journey.

    Leeanne, hang in there. You will get through this!!! We'll be talking about this time 20 odd years from now when our kids are dating, getting married etc. Is Scott at home or do you have family looking after you? Wish I could do more to help.... We'll all be thinking of you at 1 am on Sunday Morning....

    Had my radiation planning session yesterday, and got my tattoos. Quite sore. I should start the actual radiation next week, they'll call to confirm. Hoping to start Herceptin then as well.

    Hang in there everybody...
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  • tinkermax
    tinkermax Member Posts: 269
    edited March 2006
    Hi Sandra

    I had FEC75 x 8.

    Only side effects I had were hairloss and fatigue, no nausea or anything.

    I made sure I drank water by the litre to flush my system constantly, and it seemed to help.

    The anti-nause meds I had were Dexamethasone (decadron) and Ondansetron (zofran).

    Sandra, didnt you have E then CMF?
    If yes, you had the FEC too, with an added M, same drugs different order!


    Good luck to your friend.

    Ladies

    I think it is a great idea to send positive healing thoughts to Leanne, midnight is fine with me, just let me know what you want me to do, for example, are we all going to log in and join forces with our thoughts.

    Hugs ladies

    Maxine
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  • tinkermax
    tinkermax Member Posts: 269
    edited March 2006
    Peggy

    I love your new photo....cant wait until I have that much hair!!


    Hugs
    Maxine
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  • Pegk
    Pegk Member Posts: 389
    edited March 2006
    Okay, when it's midnight on Saturday night for Sandra and Maxine, it will be 6:00pm here on the east coast of the US for me in NY, Susan in Boston, Lynell in New Jersey, Norine in Pennsylvania, Janet in N. Carolina, and Cheryl in Florida.
    It will be 5:00pm for Marg and Tina in Texas.
    It will be 4:00pm for Calico in Colorado.
    It will be 3:00pm on the west coast for Lisa and Barb in Oregon.
    It will be 1:00am Sunday morning for Liezel in South Africa.
    I'm not sure about the location of all you Aussie gals, but I believe it will be 10:00am Sunday morning for Leanne on the east coast of Australia.
    Anybody else checking in can google "time zones" to verify international times.
    Whether or not I'm close to a computer (although I will try to log on), I hope you all will be able to feel my positive thoughts and energy and prayers going out east and west around the world for all of you, but especially you, Leanne.
    Love,
    Peggy
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  • hopeful1
    hopeful1 Member Posts: 54
    edited March 2006

    I am in the Cincinnati area - please count me in with the 6:00 pm group. I will actually be at chruch at that time. I will light a candle for Leanne and offer everything I can to support her. God bless you all.

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  • CoffeePot
    CoffeePot Member Posts: 34
    edited March 2006

    Delaware checking in for Leanne: I am very grateful to have this opportunity to pray for Leanne and send positive thoughts. Thanks for organizing it. Leanne, my heart goes out to you. I remember an early post I think you made about 20 yrs not being enough(I think it was you?). And it isn't. Besides your very young age, I know how difficult it is with young children. While I'm quite a bit older, I do have a 4 yr old who has had a difficult year along with me. One morning as I was rushing to get to rads, she looked at me and said,"Why did you have to go and get cancer anyway?" She was really angry with me. I can see some behavior problems developing that I think are the result of this year. Anyway, Leanne, she is a girl and I know from my own sons, that boys have very different energy and I wonder how you keep up with them. I admire you so much and I've seen an incredible spirit developing in you from your posts. Do you have specific things you'd like for us to pray for (besides a cure, obiviously)? Please let us know--like help for childcare, time for you, etc. Remember all the things for chemo and try to do them again. What helped me most was the small frequent meals, lots of water, and walking. Please try to find time for yourself during all this. Leanne, you have touched us all so much--let us help you.

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited March 2006
    6:00 pm it is then..... I will be finishing a rehearsal with the Symphony at that moment so no computer log on for me, but my spirit will be right there... sending every good thought I have towards Australia.

    *susan*
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  • marg1
    marg1 Member Posts: 73
    edited March 2006
    Count me in!!! I will pray for Leanne on Sat at 5:00pm. Thanks Peg for the time and by the way you look great. I gotta go will post later for my latest story!!!

    MARG
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  • Calico
    Calico Member Posts: 1,108
    edited March 2006
    4:00 pm on Saturday it is, I might not be on the computer but I will be with my family, so there will be two more praying with us.

    Blessings Leanne,
    chemo has never been fun. Your dream is not showing you the outcome, it's just your mind dealing with the possibilities.
    Before the easy down hill hike there is a uphill hike and that is naturally the hardest.
    You can do it!! We are all pulling for you.

    Hugs

    God Bless
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  • txred9876
    txred9876 Member Posts: 392
    edited March 2006
    I am just checking in this week as I have had my Daughter Naomi here for spring break...she is 15. Her grandmother (my ex-mother in law...she was great..it was her son that was the a**! LOL )We have had a busy week...my kids even got me on roller skates...LOL...I was the only one who did not fall on their back side....
    It has been YEARS but I picked it back up like riding a bicycle! My Daughter Pam who lives with me is 13 and she said..we should do this for exercise once a week...we may. I got the results back of my last echo and my heart is between 42-47% now. It looks like I will be heading back to Taxol to finish out the 8 treatments. I go back to my oncologist on the 19th of April and I will know more then...


    I am so glad I checked in and saw the messages about the prayers for Leanne. I say one for you at least daily if not multiple times a day. You are never far from my thoughts as I travel down this path myself. You are one strong woman and we will be here to support you along your journey. I wish like Susan said that I was wealthy and could help more then just my prayers and thoughts.....

    Keep up the fight and you WILL win this battle....

    Tina
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  • tinkermax
    tinkermax Member Posts: 269
    edited March 2006
    Hi everyone

    My patholgoy came back all clear from the oopherectomy!!!

    I hope to have my catheter (port) out this coming week...
    Then back to work the following week.

    I'll be sure to link will all your lovely ladies Saturday night at midnight, to send leanne prayers.

    Hugs

    Maxine
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  • sholroyd
    sholroyd Member Posts: 288
    edited March 2006
    My alarm is set for midnight and I will pray and send healing thoughts like never before Leanne. This will take us over to 1 April which is my 49th birthday.

    Peg you are a brilliant organiser – thank you so much.

    Maxine – great news – will think of you up at Midnight tomorrow night – I know you will be as pleased as me to be able to do this for Leanne.

    Thank you for the tips for my friend – I will be sure to pass them on.

    I have had my 3rd radiotherapy treatment today – so far so good - just so dam inconvenient!

    Sandra from the UK
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  • sholroyd
    sholroyd Member Posts: 288
    edited March 2006
    Maxine - I had Epirubicin on its own for 4 cycles then moved onto CMF. I drink a lot of water and I also think this helps - can't hold my hand up to much exercise though - so dam tired all the time. I want to lost weight but have been advised not to do it during radiotherapy as it could alter the marking up.

    Sandra from the UK
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  • AussieMum
    AussieMum Member Posts: 124
    edited March 2006

    10:00 am Sunday morning for me! Sitting in church for the morning service, praying for God's blessing, strength for the journey, peace for the soul.

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  • Calico
    Calico Member Posts: 1,108
    edited March 2006
    Maxine,

    good to hear about good path results!!!!

    Spiritually "seeing" you all in 23 hrs and 23 minutes...

    God Bless
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  • Pegk
    Pegk Member Posts: 389
    edited March 2006
    Congratulations Maxine! I'm glad you got good news!

    3 Down Sandra! You're on your way!
    Thank you Sandra for your inspiration! This was your idea and you even picked the time, volunteering to wake up at midnight! All I did was google the time zones.
    I feel like our spirits are all joined in some way anyway, but it will be interesting to feel them "sync" up at the same time.
    Until tomorrow!
    Peggy
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  • lynellb123
    lynellb123 Member Posts: 69
    edited April 2006
    Peggy, you are a wonderful spokesperson for our sassy September sisters.(Do you like the alliteration there?)I will be joining together in prayer for Leanne and her family.
    Leanne hang in there & know that even though you feel so poorly now, it will get better.

    Maxine, I'm so happy to hear your results, now you're getting your port out, you're on your way to wellness.

    Sandra, Happy Happy Birthday! I hope you have a wonderful birthday celebration with your friends. Maybe your husband doesn't realize the emotional importance of celebrations. My DH came home with flowers after my 3 month "all clear" check-up & I was flabbergasted. Then I found out that my daughters were behind the flowers & he really didn't realize how nervous I was about the check-up. Men sometimes have a hard time understanding, that's why I am so grateful for my cyber-sisters who understand EVERYTHING. Love you girls!!!
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  • Calico
    Calico Member Posts: 1,108
    edited April 2006
    Sandra,

    HAPPY BIRTDAY TO YOU

    I hope you have a wonderful day and get spoiled silly!!!

    God Bless
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  • Pegk
    Pegk Member Posts: 389
    edited April 2006
    HAPPY BIRTHDAY TO YOU
    HAPPY BIRTHDAY TO YOU
    HAPPY BIRTHDAY DEAR SANDRA
    HAPPY BIRTHDAY TO YOU!

    Now that I've figured out the time difference, I'm trying to imagine what you'd be doing on 4:00pm Sat. afternoon. I hope your having a wonderful day, maybe pampering yourself, getting ready for a nice dinner.
    Love, Peggy
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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited April 2006
    Sandra!

    Have a wonderful day! Take this opportunity to ASK for the celebration that you want. Turns out even those closest to us don't know what we want until we tell them. [Who would have guessed?]

    All the best,

    *susan*
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  • lisag
    lisag Member Posts: 22
    edited April 2006
    Leanne, Have been away a bit but am glad to check in and send you and your lovely children my thoughts today at 3:00pm. I'll be away from my computer but be aware I will be joining all the September sisters to pray for your health and happiness. I'm going to stop by the nursery and pick up some spring flowers and plant them here in Oregon for you-do you have a favorite color?
    Happy Birthday to Sandra and a sweet celebration to you!
    All has been well with me, feeling that small incremental energy each week. I sent a whole bunch of blood to a cancer study in Cleveland looking at genetics, since my BRACA tests were negative but I am the 3rd generation of breast cancer in a direct line, I'm hoping it will help someone's daughters someday. I worry so much about my two now, even as I try to reassure them. Also started tamoxifen last week so far so good. Still have some achy stiff joints, especially in the morning but I think it might be from taxol still. Have been walking most days and it helps.
    Took a little vacation last week with my sweetie, 5 beautiful days on an island in Puget Sound, enjoying the sun and water and scenery-first I have been away since last August, what a treat!
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  • sholroyd
    sholroyd Member Posts: 288
    edited April 2006
    Thank you for your birthday good wishes. Seeing as I haven’t been home long I decided to stay up until midnight. My hubby planned a birthday meal out (very nice) – I also got a bouquet of flowers – wow I underestimated him.

    My strongest healing thoughts and deep prayer to you all, but especially to Leanne.

    Of to bed now.

    Sandra from the UK xxxxxxxxxxxxxxxxxxxxxxxxxxxxx
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