Starting Chemo in December 2013

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  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited November 2015

    Kimie, hopefully it is nothing but good to get it checked. I know what you are feeling. I get my 2 yr mammo and US In about a week. I keep feeling tender lymph nodes under my bad arm. Of course my mind goes to the worst scenarios.

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited November 2015

    Kimie, praying all is okay! Keep us posted.

    Barbara, I hope you get good results on your tests next week.

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  • missy6758703
    missy6758703 Member Posts: 218
    edited November 2015

    Hi everybody! Kimmie.....please keep us posted....you will be in my thoughts and prayers! you as well Barbara!

    Life here is about the same, not much new to report. I am feeling pretty good, although still dealing with sore joints and just the overall tired feeling i can't ever seem to get rid of. My 2 year appt. went well, all my labs and everything were in the perfect range...i opted out of another PET scan for now.

    I have been doing some art therapy....it has been one of the best things i have done....i found i truly love painting and although i'm not very good, what i paint has meaning to me and I love it. I also spoke on a panel at our breast cancer support group....of course i shed a tear or two, but it feels good to talk with people that have been in our shoes or are just starting down the cancer road.

    Most of you know from Facebook that my house was broke into in September and my brand new car was stolen from my locked garage along with my purse that i had forgot under the seat when i had been walking earlier in the day. My daughter and I were home at the time....my car was found later in the day at a meth house, full of drugs, needles, knives, masks and wigs....it was filthy but in one piece. The court process was interesting, and i am thankful the man is in prison now. He was a total stranger...meth addict i guess. It really took away whatever was left of my sense of security. ugh.

    Hope you are all doing well! miss and love you all!

    Michelle

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  • kimie06
    kimie06 Member Posts: 215
    edited November 2015

    WHEW >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

    doc is pretty confident it is just the little noted cyst that my oncologist pointed out to me back in June, he is bumping up my mammo a few weeks sooner, its due in January., just to double check.

    I feel so much better now that I have seen him I was sick to my stomach all weekend.

    FUCK YOU CANCER !!

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  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited November 2015

    Sounds encouraging. Good to get the mammos early and make sure it is OK.


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  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited November 2015

    wishing everyone a Happy Thanksgiving. We all have so much to be thankful for as we start our 3 rd year of surviving this beast. Enjoy the time with family and friends.

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  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited November 2015

    yippee, had scans and saw my BS today. Had a clean mammo and US. 2 years is a high risk time for recurrence so I am glad to get this over with, MRI in April.

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited November 2015

    Awesome news Barbara:)

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  • Jodi040812
    Jodi040812 Member Posts: 383
    edited December 2015

    I too have heard two years is the most common for reoccurrence! Counting down that milestone. I guess that would be next summer for me. I do have some questions- big surprise right lol!

    I have never been a morning person, but now I admit I am awful in the mornings! Could this be a side effect of tamoxifen? I take it at night. Wondering if it is causing restless sleep or am I just a bitch lol! Also, my neck has not recovered since July. The Lat flap surgery could be the main cause, but I read tamoxifen can cause joint pain too. I take flexeral and nothing. This week I went in and said please can I have something for the pain. I hate to ask for anything because so many people lie to get meds. But, I can not stand being in pain everyday. I dread going to sleep because I know the morning will be hell. They gave me valum and hydrocondine. It has helped a lot. But, the knots are still there. I am going to an orthopedic doctor next Monday! Hoping I can get some answers on how to fit this! The PT exercises only help so much. Should I take my tamoxifen in the morning instead?

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited December 2015

    I take Tam at night and have some insomnia, but that, unfortunately, is kind of common for me, without Tam. I haven't experienced any new joint pain, so can't help you there. I have heard that it can cause joint pain, though. I don't think it would hurt to try it in the morning for a few days and see if anything changes. Do you take baby aspirin? I have read several studies that it may be effective in decreasing recurrence of BC; I have been taking it every other day, (bc I was bruising easily with every day) and it seems to have helped my arthritis in my hands. I guess it's the anti-inflammatory properties it has. My MO said go for it, when I asked her. I hope you get some relief.

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  • RobinLK
    RobinLK Member Posts: 840
    edited December 2015

    Jodi, I was in severe bone/joint pain. It was the tamoxifen. I had many more debilitating side effects. I had my ovaries out in October. I was going to switch to an AI.I no longer have the bone/joint pain, the panic attacks are subsiding, brain fog is lifting. Still on tamoxifen but can tolerate it without the ovaries.

    I hope you are able to get some answers and relief.

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  • RobinLK
    RobinLK Member Posts: 840
    edited December 2015

    Okay, third posting on BCO.

    Not posting on fb...no need for family back East to worry about maybes.

    3 days ago my LE went from swelling in my index finger to swelling up to the elbow. I am on a 3-4 month waiting list to see my LE therapist. Last night I discovered a lump in that arm just above the inner elbow area. I am concerned that it may be all related and that it could be the BC returning. I will be calling my BS, she has an US machine in her office.

    I feel like bawling... I am so tired of recurrence scares. 5 benign cysts along mastectomy scar, full body bone scan(arthritis from tamoxifen), MRI of head(symptoms from trying to titrate off Effexor), lump on right rib(scar tissue from drain)

    My lymph nodes on that side were extra nodal and I had LVI. My stress level has not been like this. I don't know why this one has me a mess. You would think one gets used to this.

    Which of my bazillion Drs should I be calling? It is not emergency room worthy, I don't think. Mentally, that would get me closer to an answer, in a shorter amount of time. I don't think I am dealing with cellulitis, and the lump is about the size of a grape tomato.

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited December 2015

    Robin, I'm sure you're worried. I think I would call the Dr that could get me in the fastest, if it were me. I haven't had any experience with strange lumps or LE, so I can't help you there. I hope you get answers soon. I'll be praying for good ones!:) Pls keep us posted.

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  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited December 2015

    Robin, I hope you can get into the LE therapist sooner. We are lucky to have a great gal locally here. When I saw the BS last week I complained of discomfort under my arm and I got an appt with the the therapist in 1 week. I saw her today and she did manual drainage, she said my LNs were swollen to capacity. It was very painful when she first started but after she worked on the pain was dramatically less. All the lumpiness I was feeling under my scar is gone and the pec. muscle margin is much softer. I go back in 2 weeks to work on the scar tissue some more. I will also get fitted for a sleeve since I am flying to China next spring for my son's wedding. It is a 14+ hr flight and I do not want to take a risk of starting any edema. I had no trouble on the shorter flight cross country this summer.

    Have you tried massaging the LN at your elbow with an upward motion to see if it will drain?

    I must get better at self massaging the lymph nodes. I was afraid to do it before seeing the BS since I feared tumor in the nodes. Turns out they were neg on the US and just puffed up full of fluid. Also I need to do a bunch of rotator cuff exercises since that is the same side I have shoulder trouble on that dates to before the cancer. She said the axillary dissection can actually flair the rotator cuff inflammatory.

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  • RobinLK
    RobinLK Member Posts: 840
    edited December 2015

    I called my BS and they are getting me in at 2 today. The waiting list is for my LE therapist's office. They only have 2 therapists. The next closest place is where I had radiation and they have waiting lists also. I may just check out Cancer Treatment Center of America. It is about as far as the second place would be with fewer lights. So 20 minutes vs 45.

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  • oranje_mama
    oranje_mama Member Posts: 260
    edited December 2015

    Robin,
    Keep us posted. Praying for you.

    I just posted a long summary here https://community.breastcancer.org/forum/80/topics/837341 of how I feel one year post final H. Sunday was my one year anniversary of being done with treatment.

    Oranje

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  • jbokland
    jbokland Member Posts: 890
    edited December 2015

    my MO had me take a baby aspirin every other day with Tamoxifen to avoid clots. Anyone else?

    The Tam wreaks havoc in my joints. My hips and feet mostly. When I first get up from bed or sitting I hobble the first 20 steps like an old lady.

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  • RobinLK
    RobinLK Member Posts: 840
    edited December 2015

    Oranje- hugs to you.

    Jbok- no baby aspirin here. My bone and joint pain disappeared when my ovaries came out.

    I went to BS today, sent for US of arm. Not a clot, but still do not know what it is.

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited December 2015

    jb, I asked my MO about taking baby aspirin and she said that was fine. I take it every other day as well. I was taking it every day, but bruised too easily. No abnormal joint pain, really. If I try to sit down on the floor in one position too long, it can be uncomfortable, but I think I am much older than you!:)

    Robin, sending good wishes for your test results:)

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  • RobinLK
    RobinLK Member Posts: 840
    edited December 2015

    It is not a blood clot, might be a fat necrosis. Was offered biopsy since I have not injured that area. I said yes then called back and said no. My lymphedema is not controlled in that arm, I don't want to add to the issue.

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited December 2015

    Robin, sorry you are dealing with this. Do you follow up with them again in a few months?

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  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited December 2015

    robin, hope that time will cause it to shrink, what ever it is. I get your worry about anything invasive stirring up the edema more. Is it soft or hard? They do not think it is a swollen lymph node? Keep us updated please.

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  • RobinLK
    RobinLK Member Posts: 840
    edited December 2015

    It is hard and I have no idea what it is. They are saying it is possibly fat necrosis, but they are not positive. That is why I was offered a biopsy, so a definite answer could be had. My BS says it is not breast cancer recurrence, but I was actually worried about lymphoma.

    At my rheumatologist appt yesterday, I was informed the lymphedema has now spread into my torso.

    What really sucks is my consult with a tattoo artist is this afternoon. I do not think that my tattoos will be happening anytime soon. I finally worked up the nerve to book the appointment and submit my ideas. Ugh...minor compared to the rest. I know..

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  • kimie06
    kimie06 Member Posts: 215
    edited December 2015

    Robin I am sorry to hear you are having a difficult go right now. I hope you get to the bottom of it, you will be in my thoughts.

    So after my little discovery I had my mammogram and and an ultrasound done on tuesday morning, everything looks great, no change and it is what I had originally thought, THANK GOD, I had myself right in a tailspin over this, I have never felt so much relief.

    Keep pushing forward ladies !!

    love to all

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited December 2015

    kimie, so glad you got good news!

    I had an MO follow up today. All is good. Bone density scan in February. Another follow up in 6 months.

    I am super frustrated with medical insurance now. My PPO is no longer being offered in TX....what a mess.

    I pray that everyone has a happy and super healthy Holiday season! ((HUGS))


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  • kimie06
    kimie06 Member Posts: 215
    edited December 2015

    OH MY WORD !! tamoxifen is making me hurt all over ...ugghhhhhhhhhh


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  • jbokland
    jbokland Member Posts: 890
    edited December 2015

    kimie- I feel your pain...literally!

    I was just wondering if I took my cancer-away pill (aka fat pill) in the morning instead of bedtime, if I would sleep any better. The muscle aches wake me

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  • count_it_all_joy
    count_it_all_joy Member Posts: 130
    edited December 2015

    My goodness, I didn't imagine this site was still active. You all just came to mind, and I wondered when the last post might have been. I'll have to sit down with a glass of wine tomorrow and read some past posts. I hear the worries and lingering issues. This is forever, isn't it??

    jbok, just wanted to share that taking my tamoxifen in the morning helped me sleep much better. So has drinking tonic water daily - it completely eliminated my muscle cramps/charlie horses. I'm not actually sure if that's something I can do for years? Anyone know if there is a problem with drinking that small amount of quinine every day??


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  • jbokland
    jbokland Member Posts: 890
    edited December 2015

    you know, I just switched to taking it in the morning and immediately had restful nights!

    The weight gain has me nuts. I am really going to have to get serious here! Christmas brought me a Fitbit and I am getting my 10,000 steps a day in. Lots of water too!

    Cheers to new beginnings

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  • kimie06
    kimie06 Member Posts: 215
    edited December 2015

    I literally am in pain every effing day because of that damn little pill !!!! once I get back to the gym and exercising after stuffing my face for the last month I hope to see a difference.

    I am so MAD AT this effing disease, we know of a girl same age as me, a little girl at home and the same BC, did all the required treatment only to find it has gone to her bones !! GRRRRRRRRRRRRRRRRRR, she is now terminal, F U CANCER, breaks my heart and hits very close to home.

    Just have to live each day to the fullest.

    xo

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