Calling all TNs

Good luck Tracy!  Hopefully they won't poke you too much!

hi everyone.  Tomorrow is my 3yr follow up w/mri...I keep hearing this is the crucial year with TN, was wondering what you all thought of that?  fingers crossed..mammo was good...do you think I should ask for other scans?  I was initially under Farber protocal, bone scan, ultra sound of organs, chest x-ray, all ok three yeas ago.  Would love to hear our experiences/opinions. THanks!

Stupidboob - I started taking celexa when I was dx.  It took about 2 weeks for me to feel better.  I don't cry hardly ever and my mind is much more clear for work, home life and making the medical decisions. About 2 months ago I thought I was good to go but I found myself crying all the time over everything, anything and having deep dark thoughts of death.  So I realized I really needed the celexa.  Back on it and feeling much better.

I was mostly against anti-depreseents but I got sick of crying and be scared everyday.

Hi Everyone,



I haven't had a chance to catch up on all the posts, but just want you to know you're in my thoughts and prayers. I did notice some newbies, and I hope this thread is bringing you some peace.



I haven't started treatment yet. I have second opinion this afternoon, so things should start moving after that. The last few weeks have been a whirlwind of tests, other procedures that need doing before treatment, and dragging my Mom to a gazillion appointments so hopefully I won't have to take her anywhere after surgery.



Just hoping everyone is doing the best that is expected and you're in my thoughts.



Kathy

sweetpickle - yes I just stopped one day no weaning off. 

I am 41 and I'm positive for the BRCA1 mutation.  My tumor is small (0.5 cm) and my oncologist advises TC x4 three weeks apart.  I have not had a body scan and she said she would not do one unless symptoms present.   With a triple negative diagnosis, I want to make sure I am doing enough upfront.  My oncologist thinks anything more is overkill, but I'm scared about a recurrence with only four rounds and no A.  Am I being paranoid?

I'm new to this board. dx 7/12 TN. stage III. dd 4 AC, 1 taxol, 3 taxotere. I had very bad reaction to taxol nerve pain. surgery bmx and te reconstruction 12/12. 28 rads with bolus, ending 3/21/13.  I thought I was clear as I had almost PcR . tumor completely gone, 3mm spot in 1 lymph node, thought rads would take care of any stray cells. I saw my RO 5/7/13 for post treatment  check, everything seemed great, see her again in 6 mo's. To my surprise, that night a pea sized lump appeared on my breast. yes, ONLY 10 hrs later!!! If I hadn't witnessed it myself, I would never believe it! Biopsy positive, PET shows no systemic disease. I saw my original onco today, suggest carboplatin and gemzar. I'm getting 2nd opinion wednesday at U of Penn hospital cancer center.  Would you consider this a recurrance, or failed initial treatment being that its so close. My head is spinning. I had a really good attitude with initial dx, now I'm scared out of my mind.  So surreal!   ps, since biopsy, atleast 2 more lumps came up.

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.    

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.   

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.

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.

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.

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

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.