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Comments

  • mel4887
    mel4887 Member Posts: 2
    edited May 2013

    Thanks sweetpickle!

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,188
    edited May 2013

    Mel4887 with triple neg and a BRAC1 diagnosis I believe you are entitled to go back to your oncologist and  have your say. I would insist on a scan, after all it is your body, your future and your life and you have the right to make a choice and have your mind put at ease.  Thinking of you.    

  • Jilly50
    Jilly50 Member Posts: 1
    edited May 2013

    Hi Ladies

    I am new to the forum first dx triple neg Jan 2011 Had WLE chemo and Rads have just had dx in other breast ER- PR- not sure of HER till after op but assume it is the same? Op scheduled for 5th June WLE not sure whether to ask for MX and hopefully stop any further problems??

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,188
    edited May 2013

    slowloris OMG only 10 hours later.  So sorry you are going through this nightmare.  I don't know whether it is a recurrence or new or failed primary treatment but OBXK, Titan and LUV are really clued up and no doubt one of them will give you advice.  Keep your chin up (stupid thing to say really, mine keeps dragging on the ground lately) but I hope everything goes well for you.  Big hugs.   

  • lmcclure4477
    lmcclure4477 Member Posts: 37
    edited May 2013

    I am triple negative and had a tumor size 1.1 cm. never had scans prior to chemo and won't have any afterward because of size of tumor and no lymph node involvement. They won't do one unless blood work comes back off or I have symptoms warranting one. It doesn't sit well that I didn't have scans but my pathology report won't allow me one according to my insurance. It doesn't sit well with me that they won't do scans so I know how you feel.

  • slowloris
    slowloris Member Posts: 85
    edited May 2013

    Thanks for responding Cocker_Spaniel.  Just got date for port, next wednesday. I imagine chemo to start immediately after. Does any one know if repetative chemo qualifies you for SSI disability. I feel ok to work now, but wonder about the future. Thought I read you have to be disabled 6 mo's before eligible. If so, I'd like to get the ball rolling now just in case.Since tx are so close, I have used all of my accumulated sick and vacation time. Money may start to be an issue.

  • Luah
    Luah Member Posts: 626
    edited May 2013

    Welcome to dtr123, tracy, slowloris, jilly and other newbies I may have missed. Sorry there are so many of you here, but please know that TN is treatable, and you will get through it. This thread was a vital resource for me as I went through treatment 3+ years ago -- ask, worry, vent, have a pity party, we're here for you. 

  • schatzi14
    schatzi14 Member Posts: 906
    edited May 2013

    Amen! Luah is always the voice of reason...she knows...she has been there and is doing fine. I hope the same for all of us.

  • LuvRVing
    LuvRVing Member Posts: 2,409
    edited May 2013

    Slowloris - so sorry you are dealing with a recurrence or whatever you want to call it.  If I were you, I would insist on tumor marker testing and a PET/CT scan so you know the extent of your cancer.  I would not take "no" for an answer.

    Carboplatin did nothing for me, but Gemzar has been a miracle.  My tumor markers went from over 1800 down to 275, so I am very optimistic.

    Wishing you successful treatment!

    Michelle

  • Lovelyface
    Lovelyface Member Posts: 563
    edited May 2013

    Slowloris - Just my two cents worth - I feel that maybe the chemo cocktail (AC, Taxol, Taxotere) had not worked for you the first time.  I don't think it is a recurrence.   Maybe this time around with the right cocktail, it will get out, get going!!!!

    For the newbies - ladies if you go to setup your profile, you can add your diagnosis there, so that every time you post, your diagnosis stats will show under your name.  That way, it is easier for others to see where you are at and be able to give you better advice.  Thanks.

  • Lovelyface
    Lovelyface Member Posts: 563
    edited May 2013

    Thank you LuvRVing - your positive comment about gemzar will give a lot of hope to people.  It is so good to know when something works for someone.  I am so happy for you that there is something out there that works in your body!!!!

  • phgraham
    phgraham Member Posts: 909
    edited May 2013

    Kathryn - so glad you posted! I've been worried about you. I'm not sure how you keep up with treatments for both your mom and you.



    Stupidboob - I hope things are easing up a bit for you. I can't imagine how you manage either with little ones.



    I had labs yesterday and my counts were way down. Had to stop Xeloda for a week. Just finished second of 2 neupogen shots. Hopefully on Monday after more labs I can start Xeloda again.



    Last week both MO and PT confirmed truncal lymphedema. I haven't even been able to say that out loud yet. Maybe typing it here first will help me accept it.



    Phyllis

  • Grammy98
    Grammy98 Member Posts: 15
    edited May 2013

    slowloris - Are you in the USA?  If so, you should submit paperwork for FMLA. You would only receive pay if you have sick leave, but it would preserve your job and not put you in a disciplinary mode for attendance.  You can have extended time off or intermittent time - I took a few days off after each of my chemo treatments using FMLA.  Check with your HR department.

  • Lovelyface
    Lovelyface Member Posts: 563
    edited May 2013

    slowloris - FMLA is to preserve your job, however, i think you are also concerned about how you will earn during this crises, well, I live in California and as soon as I was diagnosed, almost right away, I applied for SDI (short term disability).  Their phone number is 559-445-6629.  As far as I understand all employers pay the premiums for their employees for SDI.  SDI paid me about $1,282 every 14 days, including weekends.  It is not big enough to cover a whole salary but it was good enough for me, as my employer set me up at home, so I was able to work some hours and make my whole salary.  I was earning SDI and stayed home during the entire event, for 10 months.  SDI is for up to 6 months of disability or until you finish your balance and reach $0.   I collected it for 10 months.  After 6 months, or when you finish your SDI, and you are still very sick, unable to work, then I guess the LTD (long term disability) kicks in (if you have this insurance through your employer) or the SSI will kick in, I am not sure.  I hope this info. helps.  Let me know if you have any questions.  We already carry the load of a cancer diagnosis, it is really difficult to have to worry about your livelihood at this time.

  • ud45
    ud45 Member Posts: 8
    edited May 2013

    slowloris- sorry you have to go through this again. you may want to seek 2nd opinion from an onc that specializes in TN. It is surprising that the lump reappeared so soon after you had a good pathological response to the previous chemo. I pray that your new treatment eliminates all the remaining cancer cells. Best of luck to you. 

  • slowloris
    slowloris Member Posts: 85
    edited May 2013

    Grammy98, yes i currently use FMLA. part of my surgery recovery was the month of Januaary (I had pretty bad cording), then I was leaving work early every day for radiation(6wks). Now theres a myriad of pretreatment testing, besides chemo and it's effects. I wish to continue to work as often as I can, just concerned because my MO said I may be chasing this cancer for the rest of my life, however long that may be?? Partial paychecks are manageable, but if I don't tolerate chemo as well as I did the first time, finances will become an issue. I'm just trying to gather info so if and when the time comes, I will be prepared. Regular retirement will be in 6 yrs (God willing), so even disability retirement may be an option. Still young at 50.

    Lovelyface, being new to this at times seems overwhelming.I'm Learning to navigate this board.  I tried to set my settings for my profile, but for some reason it won't take my biography (the save button disappears after I type info). I may have to get my daughters to help me, unless theres a glitch in the system.

    LuvRVing, thanks for the info on Gemzar. I'm seeing my 2nd opinion this afternoon, will compare each recommendation. What are the SE's of Gemzar?  Will I be bald again?

  • 5andcounting
    5andcounting Member Posts: 32
    edited May 2013

    Help. Had a local recurrence. Gemzar and carboplatin Or taxotere and carboplati

    n?

  • Stupidboob
    Stupidboob Member Posts: 330
    edited May 2013

    I have been wondering if drinking filtered water might be taking the little bit of Chlorine out that might be killing cancer cells..............what is your thoughts?"

  • Stupidboob
    Stupidboob Member Posts: 330
    edited May 2013

    crs319 I am sorry............I can't offer any advice but I am sorry.   I am currently on Cytoxan and Taxotere for a regional recurrence

  • Stupidboob
    Stupidboob Member Posts: 330
    edited May 2013

    jenjenl thanks for sharing............I don't mind the crying part as much and I do the thoughts of death all the time........glad you are doing better on them

  • Stupidboob
    Stupidboob Member Posts: 330
    edited May 2013

    Phyllis glad to see you posting..............I have never heard of  truncal lymphedema, but I will look it up as I like to learn. 

    I am not sure what post you were referring too, but I don't have an little ones...........just my furbabies...:)

  • kathyrnn
    kathyrnn Member Posts: 366
    edited May 2013

    Hi Ladies,



    Finally got caught up on the posts. So many newbies and reoccurrences. I am so sad to read all this. (Nice to so many old friends)



    I need the collective wisdom of people with reoccurrences.



    I have a local reoccurrence. (I don't know if that is the correct description, it's what they're calling it. It's not in my breast it's in sub-pectoral Level 3 lymph nodes. I just saw someone on here describe that as a regional reoccurrence?)



    I'm having surgery Tuesday. I went for a second opinion, who told me to go ahead with the surgery and to take the recovery time to consider my chemo choices.



    My original doctors have been honest in telling me that the cancer has probably been there since the original diagnosis and wasn't killed by the original treatment. (They told me that the Sentinel node biopsy works for 96 out of 100 cases. I'm one of the unlucky 4).



    Ok, this is where it gets confusing. DF (original) is not giving chemo recommendation till after surgery and Tumor Board. (This I understand.) They did tell me there was a possibility they wouldn't be recommending chemo (hence the second opinion. ) The second opinion referenced the CALOR Study (I have a copy that may help the person who just mentioned it on here, find the actual study) and said she would definitely recommend chemo.



    Finally ladies, after all that, lol, I'm finally getting to the question.



    My first dx I had 12 Taxol and 4 AC. She is recommending 4 doses of Taxotere & Cytoxan.



    Finally the question!!! Taxotere and Taxol are very similar drugs and I already had Cytoxan. If they feel this is leftover from the original treatment, what good will hitting it with the almost same drug combo do this time (if it didn't work last time, why should it work this time?). Only answer I can get is "it's standard treatment". Doesn't reassure me, "standard treatment" is what got me in this boat :-)



    Also, anyone with a reoccurrence, what were you treated with the first time.....and then what did they use the second time?



    Thanks ladies. My faith in oncology care is a little frail right now. Bless my primary who listened to me and did a CAT.

  • kathyrnn
    kathyrnn Member Posts: 366
    edited May 2013

    Ohhh, I forgot to tell Stupidboob, I loved your reference to room on the couch! I'm on the couch with you girls......I just haven't had any time to sit down with y'all yet. ;-)

  • buccaneersdj
    buccaneersdj Member Posts: 25
    edited May 2013

    This is a copy and paste I posted in the Chemo Aug 2009 group...I thought  I would also post it in here since it pertains to TN...Thanks (this was an update to a PET scan my Onc ordered after my tumor markers went from 27 to 42 in six months, prior to the 27 reading they were 32???)

    *Update* On Monday I had the PET scan on which they did a 'wet read', so that I could see the Dr. the same day. Nothing abnormal, although I did have some uptake in my ovaries in particular the left one. I am being sent for an pelvic ultrasound. I also was tested for the BRCA, since I have a daughter. My onc. seemed to think we should just do a hysterectomy, my question was since I was TN what would my ovaries have to do with a recurrence, since my cancer was not hormone driven? Has anyone else had this topic come up, about the hysterectomy. I will let you know when I get the ultrasound results...by the way also doing labs monthly to see if my tumor markers keep going up... {{{HUGS}}} Donna

  • 5andcounting
    5andcounting Member Posts: 32
    edited May 2013

    Kathryn -CALOR definetely shows chemo benefit. Trouble is. There is not a definitive protocol. My onc wants taxotere and carboplatin. Many different opinions. Tommoriw I will try contacting duke and md Anderson to see what they think. It's all guess work I think. They know chemo works. Just not what does best. I will share what I learn. Do the chemo though. It's worth it. Also my onc said low fat (under 25 percent) diet is critical for triple negative. He said don't blame myself just start eating, exercising, and do chemo and I should have 70 percent chance of remission

  • phgraham
    phgraham Member Posts: 909
    edited May 2013

    Stupidboob - I would explain why I thought you had kids, but I have no idea why I thought that. Thinking is not one of my superpowers this week. :)



    Kathryn - I had MDA protocol of T/FAC the first time around. This time they recommended Ixempra and Xeloda. Then rads to level 3 nodes. (All level 1 & 2 were removed in ALND.). They are calling it a local recurrence but treating it as stage IV since it was back so fast. I will have scans again after 3rd round to assure no mets.



    I am like you and not really trusting anything anymore. The bad part is that I don't have a medical degree! That would sure help in making these decisions. Please let us know what they recommend and what you decide.



    Phyllis

  • slowloris
    slowloris Member Posts: 85
    edited May 2013

    well, my 2nd opinion left me feeling more optomistic and a little confused. 2nd MO suggests I use Xeloda as chemo for my recurrance as opposed to carboplatin and gemzar.  Oral meds are more appealing than IV,but want to get the best posssible treatment. She also told me my PET scan was better than my original PET wtih my 1st diagnosis, as there did not seem to be lymph involvement. 2 questions:

    1. anyone have good results with xeloda?

    2. Are PET scans always accurate?  seems like it was quicker than the first time - did they not let the dye sit long enough?

  • Titan
    Titan Member Posts: 1,313
    edited May 2013

    hey kathryn..good to hear from you even though you have sucky type news..missed you lady..know that you are busy...find some time to go play some poker...do you hear me?  you have so much on your shoulders with your mom and your own health..no one said it would be easy...dang it.

    welcome to all the new ladies here....tn is a sneaky bastard....i dunno..you do what you can and hope for the best....I'm four years out but will never think I'm in the clear..won't go there....but I will tell you that my life now is fairly normal..whatever that is....lol...

  • sweetpickle
    sweetpickle Member Posts: 185
    edited May 2013

    So sorry to hear about the recurrances. Does anyone know what the average recurance rate is?

  • gillyone
    gillyone Member Posts: 495
    edited May 2013

    Thinking of you Donna, but I can't answer your question.

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