I think I have a problem

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  • Hanna60978
    Hanna60978 Member Posts: 815
    edited December 2011

    .

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  • otter
    otter Member Posts: 6,099
    edited November 2008

    Annie, I just discovered this post on the Surgery forum.  It had your name on it: 

    "I just found out this morning I'm having a mastectomy next Friday."

    Would that be this Friday (Nov. 7), or Friday week (as they say in the Deep South)?  Was that the recommendation of your BS (what an acronym!) based on your latest incident?  Did you have a biopsy today, after all?

    Hugs, Annie...

    otter 

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  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited November 2008

    Welcome, Alaindeloin!!!!!!

    The minute I saw "Mustapha Camel Tail" in a "newby" first comment, I knew you knew Annie/HeatherBLocklear -- I just didn't know how!

    Thanks for the explanation, Annie!

    Both of you must be bursting with pride and joy over that beautiful little enchantress who is Annie's new avatar!

    Many ((((((hugs))))))) from Ann

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  • femme
    femme Member Posts: 262
    edited November 2008
    Now we're getting to meet the whole family. Get better soon Annie so we can all come to an elephantine party in your honor!!
     
    (Welcome Alain Delon.  Your mother is a very funny, intelligent and of course beauteous "woman of a certain age." By the way, your kid's kinda beautiful too, Alain Delon.)
    femme 
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  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited November 2008

    Hi all,

    This is just so strange. I have what appears to be multiple small tumors in the axilla, mostly on the scar area. They're not skin mets since they're inside the skin. However, they're growing at an alarming rate. The larger one that led me to consult again has actually grown since this morning. I wonder if that could be due to "fiddling around" in that area? Or do I simply have a cancer that's like wildfire? The BS told me this morning (being as reassuring and positive as usual) that he's "never seen anything like this before." Nice comment to send me about my day's work.

    I have an appointment with the oncologist in the morning after radiation to discuss what, if anything, can be done. I assume this will include information about my consult with MDA. I hope that's not going to fall by the wayside since my self-referral didn't go very far. They called me this afternoon to tell me that I need to finish radiation first and then they'll evaluate me for disease progression.

    How is it possible that these tumors are growing visibly in ONE DAY?

    Love to all,

    Annie, Mom to Mustapha's daughter

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  • KPolasek
    KPolasek Member Posts: 184
    edited November 2008

    Annie

    This makes me sick ...   I am so sorry that you are going through this .... I live about an 1 1/2 hours from MD Anderson.  I don't know what I could do, but I do know Houston fairly well .....

    I am praying for you ...

     Blesings,

    Kay

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  • otter
    otter Member Posts: 6,099
    edited November 2008

    There simply aren't enough curse words to represent how I feel about the situation you're in. 

    Annie, you know I've been wrong about a lot of things pertaining to BC, but I just can't believe you have tumors that are growing noticeably within a single day.  Tumors maybe; growing, perhaps...but the doubling time of a cancer cell isn't short enough (they don't divide quickly enough) to result in a palpable change from morning to evening.

    I wonder if it's maybe a reaction to the rads.  Whether or not you have additional tumors (did you have a biopsy of these new sites?), there could be swelling and other changes that are the result of tissue damage from radiation.  I think everybody that has rads gets some swelling of the targeted areas.  In your case, maybe you do have some residual tumors in your axilla, and they're being bombarded by the rads.  And, the rapidly dividing cells (as most cancer cells are) are being hit by the radiation.  Some of those cancer cells (hopefully, all of those cancer cells) are dying.  Dead or damaged tissue does get kind of funky; fluid builds up in there, and other (inflammatory) cells infiltrate the site to try to clean things up.  This could definitely cause swelling.  It may be swelling that you're feeling, rather than actual growth of the tumors.

    I'm not so sure MD Anderson has brushed off your query.  Since radiation is a logical step in your treatment protocol (given the fact that you had a lumpectomy and you have known positive node(s)), and you've already started rads, nothing much would be gained by interrupting your radiation treatments to go to MDA for a consult right now.  It really is progression that's the big threat.  So, MDA is figuring, let the rads do their job, and see what's left afterward.

    I'll bet I know what you're worried about:  rads are a local treatment--what's going on elsewhere, in the meantime?  You just had a PET scan, and it didn't show any mets besides that (residual) one under your arm.  It's a better strategy to knock back whatever is in your axilla, and possibly still in your lump-less breast, than to go hunting around the rest of your body while those more immediate threats go unattended.  Maybe that's the good thing about rads--BC tumors generally respond to rads, while we know a lot of them don't respond to one or another of the chemo drugs.

    What's this I read about a mastectomy on Friday?

    BTW, that's a fantastic daughter (and granddaughter) you have!

    Here's a she-elephant, leaning your way... 

    otter 

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  • Alaindeloin
    Alaindeloin Member Posts: 8
    edited November 2008

    This will be my last post because my mom needs her privacy .Ijust wanted to send all of you tons of positive enrgy for the battle.

    Keep fighting,too many people cherish you and need you.You need to be here in a few years to help the women who are diagnosed with breast cancer,to give them hope.

    I am counting on you !

    My heart and my thoughts are with you.

    stephanie

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  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited November 2008

    Annie - your daughter is amazing. Congratulations on doing such a wonderful job raising a great woman.

    I'm with otter - rads are really hard on our bodies. They are not as dramatic as chemo - we don't get bald and throw up, and no one sees the burns, but they do a lot.

    And you are contacting the right people, and asking the right questions. It's just that the answers are wait and see.

    When I got sober, I wanted a signed pledge, FROM GOD, that it was all going to be okay. Because my entire life was a mess. Instead, I got little messages from people I hadn't heard from in years, saying that they cared about me and were so glad I was okay. And new opportunities kept cropping up in my life, just when I needed a new job, a new friend, a better relationship with a relative. But that took time.

    Now you and your lovely family occupy a small place in the corner of my heart. And that heart believes that it will OK. Maybe not the way you want it to be, and certainly not in your time frame, but OK.

    We are on a journey, and for many of us, this is the first big bump - yes, we've experienced loss, but confronting our own mortality is another kettle of fish. And you are a competent woman, you are used to making things come out the way you want them to be. Now, you aren't in control - and not being in control seems to mean that you will not be OK.  You don't know that. You just know that there are problems in your axilla. And this will be resolved. And then the next thing will happen.

    Keep trudging, sister. Hope you can feel the love.

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  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited November 2008

    Dearest all,

    Thank you from the bottom of my heart for all your continued support, wisdom, information, et al. I gather more strength from this board and from my girls than from anywhere else!

    I just had a meeting with my oncologist who had contacted Dr. Vicente Valero at MD Anderson. Dr. Valero will see me within a week, after he gets back from a conference in Europe. In the meantime, here's the plan: since the recurrence is immediately below the skin and not deep in the armpit, they want me to continue the course of radiation. The radiotherapy oncologist has already increased the fields to include areas extending towards my back. At the same time I'm going to start taking Xeloda, five pills a day with weekends off. As soon as radiation is over, I'm having Xeloda together with another systemic drug (Oxyplatin or something like that?).

    When I go to MDA, I'll have a complete workup -- scans, X-rays, e tutti cuanti. Then we'll see what we see. However, the oncologist said that this sort of local recurrence (or remnant) is not that unusual in triple negative, and that as long as "the horse hasn't left the barn" (as long as there is no distant spread), we can be optimistic and hopeful. That's all I needed to hear.

    Off to campus to teach!

    Love to all,

    Steph's mother

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  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited November 2008

    Annie, I am overjoyed you are seeing Dr. Vicente Valero!  That is fantastic.  It sounds like you have had a huge boost to your spirits -- consequently, I have too!

    Love,

    Ann

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  • jeanne46
    jeanne46 Member Posts: 1,941
    edited November 2008
    Annie, Dr. Valero is supposed to be one of the experts in the field of triple neg disease.  Also, I believe that he is the Dr. McDreamy that Watson sees (and is smitten by).  Sounds like a good plan all the way around.  
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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited November 2008

    Glad to read your post Annie and to understand additional consultation has been obtained, new plan in the works, and then followup with the triple neg MD Anderson oncologist.
     
    There's lots of women (and some men) here on Xeloda, so don't hesistate to ask your questions. I see the systemic IV agent is a platinum, good in triple negative disease.
     
    Hope your skin is holding up during your radiation, and that you are holding up with teaching and grading.
     
    Good wishes being sent your way for you and yours.
    Tender 
     
     
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  • femme
    femme Member Posts: 262
    edited November 2008

    Dear ICanDoThis,   What a beautiful recipe for life you have given us in your last post.  I think we can learn so much from your experience of getting sober.  The telling of your story focuses on the FAITH necessary to trudge, (and happily sometimes run and leap) through each of our life journeys. The wisdom gleaned from your experience is a gift to all of us. 

    Annie, I too, like many of the other erudite elephants have stated, feel that your consult at MDA is necessary and am glad it will be happening soon!

    with jumbo hugs, dumbo aka femme  

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  • femme
    femme Member Posts: 262
    edited November 2008

    To clarify my last post:

    "FAITH"  can be spiritual, religious or existential, all of the above combined or just one or two aspects mentioned.  Faith is the belief that even if one is no longer in control, things will work out ok.

    femme 

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  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited November 2008

    Annie - I am thrilled that you are going to MDAnderson after all, and to a trip.neg. specialist, and within a week of his return.

    Lisa

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  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited November 2008

    Dear Sue, Tender, Ann, Femme, Lisa, Otter, Jeanne, Kay, Hanna; ALL my dear kind and forgiving friends,

    Thank you from the bottom of my deep, dark camel heart for all the feedback. I was feeling a bit sorry for myself during the night, so got up and re-read all the messages on this post. I went back to bed and to sleep with the knowledge that there are women I don't even know who actually care about me and whether I get well or not. That's a pretty incredible thing to realize, especially in the dark despair of a sleepless night.

    I saw my radiation oncologist this morning, and she's sending me to San Antonio next week for a combined PET and CT scan to locate exactly where this residual/recurring disease is so that she can give me eight boosters to the affected area at the end of treatment. I'm sure they're also checking on spread since decision time for treatment is very tight in the case of this horrible variation of an always-horrible disease, but being kind enough not to say it straight out at this time.

    This radiation oncologist is totally wonderful. She's young; very, very sharp; brisk; professional; but also kind and caring. She reminds me of my own daughter, Stephanie! Actually, they even look alike. I think that if anyone on God's green earth can save me, that doctor is the one. And, of course, I'm also looking forward to meeting with Dr. Valero and being reassured that the treatment I'm getting locally is the best I can hope for anywhere. Funny thing -- I was researching him a bit last night, and I may have known him when I was younger. I think he was one of the gang I ran with when I taught at Berlitz in Mexico as a young girl! Isn't life strange and funny?

    Love to all,

    Annie Camel Kiev (I'm getting so many rads I now light up in the dark).

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  • cmb35
    cmb35 Member Posts: 1,106
    edited November 2008

    Oh Annie,

    Glad to hear your spirits were lifted, hugs to you.

    cmb

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2008

    "the dark despair of a sleepless night."

    How eloquently you speak for the many through your own experience. You, dear Annie, know such nights all too well. Who might understand more deeply than those who also know? This latest news sounds good. You sound good. Keep your oar in the water!

    Hands up! You are surrounded!

    Judie

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  • chumfry
    chumfry Member Posts: 642
    edited November 2008

    Annie, the plan sounds great. I'm glad you'll be able to see the specialist so quickly. And platinum drugs are supposed to be excellent for triple-negs. I had weekly Carboplatin/Taxol last year and I tolerated it very well. I think about you every day.

    --CindyMN

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  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited November 2008

    Chernobyl to you too, Annie!

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  • jeanne46
    jeanne46 Member Posts: 1,941
    edited November 2008

    Good to  hear that you are having a PET/CT before finishing rads.  Just a word of advice.  For well over two years, every time I had a PET/CT or a PET I was told simply to fast the day of the scan. In September I went to a different facility.  They told me to refrain from any carbs, sugar, dairy (except for hard cheese) and to avoid chewing gum and exercise for a full 24 hours before the day of the test.  Since then I've spoken to some other oncologists who also have their patients do same.  All feel you get a cleaner, more reliable read.  ????  Check out your facility.  See what they require.  And most of all, best of luck that you are finally on the road to recovery!

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  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited November 2008

    Dear Annie, I'm so happy your rad onc sounds so capable!  This sounds like a great plan, and I'm buoyed to hear of it!

    One thing -- I don't understand why you need forgiveness -- except that all of us do, I guess!  (I feel like I need it when I fall short of accomplishing everything I wish I had time and energy for.)  But in any case, it is great to know that acceptance, understanding and support are here for all of us!

    Love,  Ann

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  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited November 2008

    Oh Ann, because I was sarcastic to one of our dear sisters and friends. I was very down (you know, that deep, dark hole that we visit sometimes), and didn't weigh my words or the situation. My sarcasm wasn't even justified -- just crazy! Stupid me!

    I only hope now that things will go better. Have you or anyone else heard of a radiation resistant tumor? Does that happen? It seems like everything has gone wrong with my case, and now of course I'm fretting about that possibility.

    Egads, I need to have a glass of wine.

    Love to you Ann, my dearest friend.

    Annie

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  • AnneW
    AnneW Member Posts: 4,050
    edited November 2008

    Hey, Annie Camel Heart,

    I'm just getting caught up on your escapades here. Sorry the night demons are tracking you. They come to visit us all, even a few years out...

    I hear your worry about the armpit stuff. Tis truly the pits. But, it sounds like you're finally getting the right folks on your team. And maybe the less you have to do with Gary the better?

    Anyway, just wanted to check in here and say hey, to remind you that even if I'm not here physically, I'm always with you in my heart.

    Cloven hoofed hugs,

    Anne

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  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited November 2008

    Dearest All,

    Tomorrow is my combined PET and CT scan. Please send a little prayer my way.

    Love,

    Annie

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited November 2008

    So good to hear from you Annie.
     
    I will say a special prayer tonight for you.
     
    ((Hugs))
    Tender 
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  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited November 2008

    {{{{{You will be in my heart and thoughts, my friend.}}}}}

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  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited November 2008

    I'm ( no, WE'RE)  pulling for you!

    Lisa

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  • femme
    femme Member Posts: 262
    edited November 2008

    femme here - present and praying!

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