Calling all TNs

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  • 5andcounting
    5andcounting Member Posts: 232
    edited May 2013

    Is there anyone on here that has had a true local recurrence? Breast tissue only? No clavicular nodes or chest wall. I had lumpectomy chemo and rads and then boom 3.5 years a lump. It's gone now. BMx and pet scan totally clean but I'm petrified of mets. I did immediate reconstruction last week and feel beat to hell. Chemo will follow when drains out. Any similar creatures out there ?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2013

    Crs319 - I was diagnosed on 3/6/13 with a local recurrence. I finished treatment the first time around in August, 2012.



    Docs were surprised because lumpectomy tissue and SNB on 5/18/2012 were clean. I also had done chemo and rads. Scans on 12/1/2012 were clear.



    I found the new lump on 1/31/2013, just below the lumpectomy incision line.



    I had right mx in March with ALND where they took 47 level 1 & 2 nodes. One was positive.



    It's definitely a nasty surprise. I'm doing chemo again right now. I started ny second round of Xeloda and Ixempra today. We are planning 6 cycles of 3 weeks, then rads to the level 3 nodes.



    I think there is a local recurrence thread here on bco. I will try to find the link and post it for you.



    Hope this helps a bit. All the best,



    Phyllis

  • 5andcounting
    5andcounting Member Posts: 232
    edited May 2013

    Sorry to hear this Phyllis. Hope things are progressing well. The calor study certainly makes the extra chemo look like a smart idea. How did they decide on your chemo drugs?

  • PeggySull
    PeggySull Member Posts: 686
    edited May 2013

    Crs, I am so glad your treatments for a local recurrence went well and I am totally understanding your fear of mets.



    I know it must have been extremely scary to feel that lump after years had gone by.



    I am reluctantly going for a rad consult tomorrow because, even after the chemo and BMX I' m terrified of a recurrence or mets.



    In your case it seems you have done everything that was needed, even though you were blown away by the recurrence. That is brave and smart.



    Now it's time to heal and live each day to the fullest. At least that's what I tell myself.



    I know that your post was asking for people with a. Local recurrence but I identified with you so much I just had to write!



    Hugs,

    Peggy

  • jenjenl
    jenjenl Member Posts: 948
    edited May 2013

    My doctor agreed to the bone scan, waiting for it to be scheduled.  Fingers crossed it's nothing.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2013

    Crs, Thanks for the calor reference. I had not seen it. My MO at MDA, mainly told me that since a local recurrence so quickly is unusual, they plan to treat it as metastic cancer and use chemos in the order of most studied and strongest, starting with Ixempra and Zelda.



    The calor study backs that up. Too bad my MO didnt give me the reference. Or if he did I was to freaked out to absorb it. Thank you!



    Ix and X are kicking my butt! Partly because I'm a wimp and partly because my bone marrow is still in recovery from last year's chemo. All my counts tanked on the first round and needed 2 neulasta shots. They worked though! This round we are reducing the Xeloda about 10% to try and prevent that.



    I'm interested to know what they choose for you. Please keep us updated,or pm me if you prefer.



    Phyllis hope there aren't too many spellos. Typing on my tablet with fat fingers because I lost my stupid stylus.

  • minxie
    minxie Member Posts: 484
    edited May 2013

    I had a true local recurrence as well, one year ago this May. Mine was also found 3.5 years out from original diagnosis. It was right under the skin but over the implant in the exact same spot as the original tumor, appearing after lumpectomy, chemo, BMX and recon, tenacious bugger. The new tumor was 1 cm, no nodes, so they took out my implant and the tumor and I recieved a course of radiation, which I had not had before. Just last month I got my final implant put in.

    It was a horrific shock to say the least. I think worrying about mets afterwards is inevitable. Sorry that you all have been through this as well...

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2013

    Wow minxie!  I was mad that mine was back in the same spot after the lx "how can that happen??" I would have compeletely flipped out if it happened after bmx also!  These are tenacitious little buggers as you say.  I also call them a lot of things including nasty bastard f***ing cancer cells....but that's usually when I'm alone.  Tongue Out

    Phyllis

  • bak94
    bak94 Member Posts: 1,846
    edited May 2013

    Just getting caught up on all the posts. Looks like I missed a birthday! Happy belated birthday Karen!

    Maggie-I am excited to hear how your surgery goes!

    CS-I hate wearing the sleeves, but sometimes I feel like I really need to wear them. I am suppose to wear them on both arms during the day, but I don't! When I do wear them my arms feel so much better. It is amazing how tired heavy lymphadema arms can make you!

    So I had my follow up, my last one with my MO:( He is retiring, I am happy for him, sad for me. He let me off the hook as far as scans go, he said once a year (basically what my insurance pays) so I will be due in August. Now waiting for tumor marker results.

    I need to get it together. I do not know what is wrong with me but I have no motivation. Today I finally picked up the phone and scheduled an appointment for pt for my arms and chest tightness. I need to eat better. WHy don't I when I know it is so important? I feel the same way as you do Stupidboob! Your rant could have easily came out of my mouth, in fact I think it has before! I basically feel beat up. Not much to do except move forward, right? I wish I knew how to put cancer in the background, it seems to be my daily main focus and I am so done with it.

    Happy day to all of you!

  • OBXK
    OBXK Member Posts: 791
    edited May 2013

    Bak - I hope you get your mojo back soon! Plan something fun for yourself in the near future.

  • Kayak2
    Kayak2 Member Posts: 8,561
    edited May 2013

    Liz1973 – Just catching up on several pages worth of posts and wanted to respond to your radiation concern.  Perhaps you are not aware that some centers have x-ray tables where you receive your radiation treatment lying on your stomach, rather than your back.   There is an opening in the table and your breast dangles down, thereby minimizing (or maybe even totally avoiding) radiation exposure to the heart.  You may want to check around and try to find this option.  All the best to you!

  • Stupidboob
    Stupidboob Member Posts: 345
    edited May 2013

    Attention to the ladies who have had radiation.    I was told that most the time you have to have an MRI so that they can see where to shoot you at.  OMG not another toilet paper roll..........I can't do it.    Please tell me if this is the norm?

  • Stupidboob
    Stupidboob Member Posts: 345
    edited May 2013

    bak94 I am so sorry you are dealing with all these feelings too...........just plain SUCKS!!!   I am on my own nerves and that is bad.   As far as the eating.....WOW I HAVE BEEN HORRIBLE.   Every night I tell my body how sorry I am but then darn if I don't do it again the next day.   Sometimes I eat because I am hungry, sometimes because I am looking for anything with taste and/or to ease my tummy and other times just do it to do it.   Bored, nervous, just can't take it anymore eating.  I think where I am right now (and I know it is stinkin' thinkin') but it is what it is.....I just feel like WHY BOTHER!!!.    I did all the things I was told to do and it came back anyways.   Just when I was finally getting to where cancer was not my every thought in the day.......it came back.:(.   My mind wants to do alot of things but my body says nope not going to do it.   I have been an emotional wreck these past few days and my body is just doing things that unless you have endured chemo you can never understand nor can it be explained.   It is almost like we are alien to our own bodies.   If you ever want/need to talk just let me know and we can set up a time.    Hope you are feeling a bit better.....
    {{{comfort hugs to you}}}

  • LRM216
    LRM216 Member Posts: 2,115
    edited May 2013

    Stupidboob: I didn't have an MRI prior to rads, but I did have to have a special chest CT that they did that took longer than a regular CT did, as they mark it all in small quadrants. I asked afterwards if it was all clear in the hope they saw nothing else pop up, but was told it was not that type of CT, it was only for markings for the rads. It was after that was done and plotted that they did my little dot tattoos. Just wanted to answer your post about the MRI. Maybe different places use different tests, but mine was a CT.



    Wishing you, and everyone else on this thread - the best.



    Linda

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited April 2014

    Bak I know how you feel.  I have no motivation whatsoever.  I do what I have  to do but with a complete lack of motivation.  I don't want to go anywhere and I don't really even want to see my friends at the moment.  What am I waiting for, well for it to come back I suppose.  Every little ache or pain has me wondering. I'm irritable and uptight to it seems like everything all the time.  My doctor wants me to have another CA-153 test to see if it is higher than last time and I am dragging my feet.  I don't want to know yet I think about whether it has gone up all the time.  Make sense,  nothing does to me at the moment. I know I should give up the smokes cause I have a cough and I should give up sugar but I just don't seem to be able to  or want to.  I am so over this cancer shit. I can't even tell my family because they worry.  Now this flaming lymphoedema.   My workmate has just undergone a lumpectomy with no nodes.  She just had to have the lump out and three weeks of radiation and because she is receptor positive she even gets to take the pills for five years. I am not normally an envious person but when she text me and said she is sore I uncharitably thought harden up girl.  Thank god I didn't text that to her.  What the hell is wrong with me.  I am sitting here looking at the most beautiful sunset and normally I would love anything like that but I can't even enjoy it.  Cancer sux big time.  My god what a pityfall post perhaps its me who needs to harden up do you think.   

  • Worrywart9390
    Worrywart9390 Member Posts: 101
    edited May 2013

    I'm still pretty new to this whole cancer thing, and mine so far has been easier than a lot of you, lumpectomy, one lymph node, but I am going thru chemo and radiation. I never understood cancer before, and now I know that unless someone has really taken our ride thru this, they don't really understand what we go thru.  The feeling that you are watching your life from the outside, the terrible side effects from chemo, the hair loss that everyone thinks is ok, etc. etc.   But this is what makes this forum so special, we have eachother to talk to and vent to and learn from and I really love that if I feel scared or nervouse or just want to see whats going on, I can log on and instantly get answers and feel better. So thank you to all who post!!

    I hope everyone has a good day today.

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited May 2013

    Worrywart what a welcome you got after my rant.  Remember I said my thoughts were uncharitable.  Well they normally aren't thank goodness only occasionally.  Your name fits me all over. I am a proper worrywart and I worry over everything.  Your cancer would not have been any easier for you than mine was for me.  You went through the same thing with just a different stage.  Any time that you feel scared (as I do at the moment hence the rant) you can come on here and we will all understand. Its the fear of recurrence that is the worst and it gets to me every now and again, silly I know because what is going to happen will happen but i guess once you have been there once.......

    So you come on here whenever you want to because we even have humour at times.  Annie xx

  • Worrywart9390
    Worrywart9390 Member Posts: 101
    edited May 2013

    Hi Annie!  Thank you!!  I fear recurrence as well...I think I read too much...I asked both my oncologist and my surgeon how does someone go from stage 1 to  3 or 4 in a year or so and they didnt really have good answers.  Being grade 3 or triple negative I think makes the fear more real as well.  I have two beautiful girls at home age 14 in 2 days and 17.    They are not babies, but I pray I will see them to their independence.  And that I can enjoy that time with them.

    You have to be ready to give up cigarettes and sugar.  It is not an easy thing to do, especially the cigarettes.  I gave them up 23 years ago, and it was the hardest thing I ever did.  But keep trying, and one day you will be surprised that you have the commitment to stop.  As far as the white sugar, think of it as our way instead of taking hormone pills.  If we eat better it lessens the recurrence.  I've been doing ok with the eating except that on saturday I took the bunny ears off one of my kids easter chocolates leftover and on sunday i ate the rest of it...lol  couldn't help myself.  But everytime i eat something healthy I feel like I'm a step in the right directionl  This is no easy road for sure.

    I read on here someone suffered from anxiety for years, when she was diagnosed with breast cancer she was so scared of recurrence she started eating right, exercising, etc...guess what?? it cured her anxiety..She had it in her all the time, she was never ready.

    I dont mind reading the rants, it makes me know we are all human and dealing with a very difficult disease that so many people think is a walk in the park.  It makes me crazy.

    Hope you have a good day today, as for me I cant get one moments sleep.. Shouldve taken a tylenol pm when i had the chance.

    Sending positive thoughts your way....hugs!!!

  • natL12
    natL12 Member Posts: 135
    edited May 2013

    Well, its been about a year since my diagnosis, and I was reading these posts and remembering...going out to get a wig fitting, buying a pretty silky scarf and a couple of perky hats to wear for when I went bald. WELL,, when I went bald I sure as heck didn't feel PERKY!!! And I've never worn them. Wore cotton bandannas when it was warm, and knitted caps when it was cold. And the wig sometimes so I wouldn't scare strangers!

    Glad to be rid of all that, and comfortable with my 1/2 inch to 1 inch long hair. Strange though...it's not growing any more. My nails and leg hair are very slow growing, too.  Anyone else experience that?  Nat

  • Nettie1964
    Nettie1964 Member Posts: 759
    edited May 2013

    Well, don't know where to start!  Just wondering if any other TN have experienced pain under the breast that was affected, like in the rib area, also, intermittent pain under the arm, I have checked numerous times for lumps/bumps and I can't find any.  My ON checks me every time I go and never finds anything, but the pain is enough to drive me crazy with worry!  Sometimes I wonder if I've been told everything.  Not one of my doctors, including MD in Houston, has suggested a PET Scan. I'm assuming this will be done at some point!  I've finished 4 dose dense AC and 1 of the twelve weekly taxol.  So far, the chemo has not been an issue for me!  Seem to be handling it very well.  Did lose hair and have some tiredness, but all in all, pretty good!  I do find that with the first taxol, I've had some muscle/bone pain, also that is freaking me out because it's mostly on the same side of my body as the cancer!  

    Anyway, I would just like to hear from any others they may have experienced other "pains" that did not turn out to be cancer!

  • jenjenl
    jenjenl Member Posts: 948
    edited May 2013

    Do you still have the breast?  Or is that the sight of a surgery?  If it's surgery then I have pain all the time in that area...ribs and underarm.  I've never had a PET scan but did have a CT scan at time of diagnosis to determine initial stage before surgery.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2013

    Hi Nettie, I have those as well. Friday will mark 1 year since my last treatment and I have sharp stabs in my pit, or upper arm, or my upper back just opposite my cancer boob. I also had a very sore and tender spot just under my cancer boob, on a rib. I had a bone scan, and a ct (that is all I have ever had)Nothing there. My RO said it's either from lymphedema or the nerves restarting post surgery. Everyone has different pains, but we have the right to ask becasue one never knows.

  • lmcclure4477
    lmcclure4477 Member Posts: 180
    edited May 2013

    I also get rib pain, pain on the side of my tissue expander, pain in my back. If u are getting taxol now, that causes bone, muscle, and joint pain. My pain started after my first taxol treatment. I had no pain when I was getting AC treatment.

  • ud45
    ud45 Member Posts: 11
    edited May 2013

    Nettie - I get pain too under my arm and chest on affected side, like you I am always feeling for any lump. I had a bone scan last month and it came back clear clear. it is good to hear from others with similar issue. it might just be our body healing after surgery.

    I had my #3 TC today, my blood work shows high liver enzyme. Has any one experienced this? I have read about the benefits of liver cleanse and probiotic. please advice if you have tried one or both. Thanks

  • debbiej
    debbiej Member Posts: 72
    edited May 2013

    Hi, I took Taxol for three months once a week and now I am on FAC once every threes weeks for three months.  I go to MD Anderson in Houston and that is their protocal.  They say that having Taxol first and following up with FAC has been proven to be the best method.  I have BC with mets to the lungs which they removed from both areas.  They were both around 2cm.  They actually took a lobe out of my lung because the cancer was in a hard area to get to.  I did'nt find out about the BC in my lungs until two months after the lumpectomy.  It was there all along, it showed up on my x-ray I had before the lumpectomy.  Don't know if this helps you.  That is just what I was told.  I wish my FAC treatments were over.  I go in tomorrow then I will be down for at least a week.  The first one finally just wore off and here we go again.  I ended up going to the ER on Saturday with severe heartburn and dehydration.  My  BP is really low all the time. 90/56 most of the time now.  I will have to ask my Onc. about that tomorrow.  I had IVs on Saturday and able to come home.  They were quick and efficiate.  The best ER I have ever been to.  Usually you are there for hours!  We left the house about 3:00 and we were back home by 8:30 and it takes a half hour to get there.  Pretty impressive.  I hate CANCER!!!!!!   Hugs and good wishes to all!   

  • regbeach
    regbeach Member Posts: 108
    edited May 2013

    Hi, I posted about a week ago - about my mom who is 73 and had a stroke last year, and now we are faced with a decision about chemo.  (TN, Grade 3)  As I said, she is not able to communicate normally so it takes some deciphering to figure out if something is bothering her. Yes/no responses can be inconsistent since they are abstract concepts. 

    Anyway, it seems like the side effects are a huge unknown. Some of your reports make the side effects seem fairly manageable but then I read a post about ER visits or someone had a blood clot in their lung, etc.  And, I start to think all over again that maybe it is too much for her (or maybe just too much for me- her caregiver and interpreter of sorts).

    Will she be able to go to her physical therapy?  Will she have the energy to walk (she walks with assistance)?  She is a strong person and made more progress in her stroke recovery than some drs. predicted.

    What side effects will be hard for me to decipher?  Some I will see -sores, or results of blood tests.  What side effects are ones that only she will know (that I can't see)?

  • placid44
    placid44 Member Posts: 497
    edited May 2013

    Nettie,



    I had rib pain from neupogen shots during AC chemo.

  • mags20487
    mags20487 Member Posts: 1,591
    edited May 2013

    regbeach...these are the same unknowns that any woman facing chemo has.  None of us, young or older can predict how our bodies will react to the meds.  Unfortunately there is just not an answer to your questions.  I am so sorry that you have to deal with this.  It is sometimes harder on the caregiver (in my humble opinion) to watch a loved one suffer than to go thru it yourself--my hubby says he disagrees ;)  I hope you can get it figured out soon.  Decisions as these are so tough!

    Maggie

  • jcolford
    jcolford Member Posts: 120
    edited May 2013

    I also have had rib pain since New Year's Eve and my onc says that it is nothing. What I am wondering about is if any of you that had 4 AC dose dense then 4 Taxol dose dense are still suffering with extreme pain in your hips and upper legs. I completed treatment in January and the pain now is worse than during treatment. I also suffer from pain and weakness in my upper right arm (opposite side of mx). It feels like I slept with my arm hung over the bed but this has been going on for several weeks. I have tried Tyleno #3 as well as morphine and neither aleviates the pain in the arm. I recently lost some of my toenails after all this time and that along with the neuropathy in my feet makes it difficult to get moving in the mornings. How long do these extreme side effects normally last? If I had known that I would have this pain I don't know that I would have even done treatment at all. Normally I have a high pain tolerance but lately feel like a real wimp. Everyone expects now that I am done treatment I should be fine. Sigh, I wish.

  • Stupidboob
    Stupidboob Member Posts: 345
    edited May 2013

    thanks for the info. Linda.

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