Calling all TNs

16946956976997001198

Comments

  • Luah
    Luah Member Posts: 1,541
    edited May 2013

    Reality: I didn't receive any private message. Maybe, try again? 

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

    Hi ladies I'm on lunch break so quick post but I simply must say HAPPY BIRTHDAY to a very special lady called Karen, OBXK. Unsure of the time zones so hope I am not too late.  Have a great day with a glass of wine, some green if you can and hopefully your old feller will take you out for a meal or cook you a scrumptious one.  Either way hope you enjoy your birthday with many more to come and have a great time.  Luv Annie   

    Hi Lovelyface. So good to see your post.  Will catch up with you later.

  • Tazzy
    Tazzy Member Posts: 2,546
    edited May 2013

    Quick check in before I go pack for my wine fest weekend with a girlfriend.... missed it last year due to chemo... making up for it this year.  

    Good to see you again Inmate - sounds like you are doing well.

    I cannot catch up with you all, but wanted to say hi and hugs to everyone xxxx

    Oh! happy Birthday OBXK.

  • Titan
    Titan Member Posts: 2,956
    edited May 2013

    Happy Happy Birthday Karen.... enjoy! 

    Lovely...so good to hear from you lady..missed you and glad you came back to post...I hear you on the doctor thing....as much as I know we need to be followed for years and years I don't like it either...have a mammo and onc and bs appt this month..ugh...not looking forward to it..especially the mammo...I do feel just fine but you just never know do you...long gone are the days where you went in for your mammo and left thinking nothing could be wrong

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

    Happy, happily birthday Karen!

  • TifJ
    TifJ Member Posts: 1,568
    edited May 2013

    Happy Birthday Karen! Hope you are having a joyous day!

  • JAN69
    JAN69 Member Posts: 947
    edited May 2013

    Karen - My happy birthday greetings, too.  Whoop it up!

  • Grammy98
    Grammy98 Member Posts: 16
    edited May 2013

    ud45 - My dx was very similar to yours; see my signature (my 1 lymph was a micro).  I did TAC, all three drugs every 3 weeks for 6 rounds.  The T is Taxotere, not Taxol, just to clarify.  In my part of the (USA NW) world that is the given standard treatment.  I'm not that far out, but I am 16 months post chemo.  I personally don't want to "waste" time mentally second guessing my therapy.  I pondered whether to choose being in a clinical trial and deliberated over it for some time.  I finally decided to go for it, then discovered I didn't qualify.  I was secretly glad as it would have extended my treatment.  If my cancer recurs, I will not blame it on the fact that I did not qualify (I did not have enough lymph nodes removed).  We make the best informed decisions we can based on the information we have at the time.  Best wishes and prayers going your way.

  • ud45
    ud45 Member Posts: 11
    edited May 2013

    Grammy98 - you are right, our dx is similar. congratulations on 16months post chemo. My chemo is TC(taxotere & cytoxan) every 3wks x 6, my concern is that I am not getting Adriamycin which seems to be standard for tn. I will discuss this at next apt. with MO. I also feel like I did not have enough lymph nodes removed. My MO says chemo will get any cancer cell floating around,  but because I had surgery first, there is no way of monitoring the effectiveness of the chemo. The whole process is overwhelming. Thanks for sharing and best wishes.

  • Lovelyface
    Lovelyface Member Posts: 674
    edited May 2013

    Luah & Titan, thanks ladies.  So good to talk to you both.  So happy to hear you both are doing so well.  Luah, sorry to hear you had a few scares.  I am wondering how strong you had to be to hear the results.  My goodness, that is something I just can't handle, it is beyond imagination.

    I had reorganized my eating habits (don't want to say diet), from March 4th and strictly followed the plan.  I thought to myself that finally in 55 years, I have finally learned how to eat and lose weight.  I lost 7 lbs. in March, but in April did not do well.  The food and habits were great, I started having symptoms of that same shaky, weakness type thing I was feeling before diagnosis.  It is the worst feeling in the world.  I remember seeing many different types of doctors and getting many blood tests, everything was negative.  Yes, after 6 mos. I was diagnosed. 

    Anyway, this time around I feel that maybe I was not eating enough fat in my diet. I never thought like this before.  Is it possible that I am not having enough hormones due to lack of fat in the diet? I am seriously thinking this seems to be the case.  I ate lots of fatty food today, but by the afternoon still have that looseness, shakiness.  Anyone know anything on this subject?  I understand at menopause our ovaries don't make reproductive hormones anymore, our hormones come from our fat cells.  Is this true?  Can anyone can shed a light on this subject, please.  Anything?  I also have been feeling lots of activity in my neck (thyroid).  The nodule????  So scared, so damn sick of this crap. Thanks everyone!!!!!

  • Lovelyface
    Lovelyface Member Posts: 674
    edited May 2013

    Luah, those stats are disappointing and scary.  I had seen stats for 5 year survival and this is probably the first time I have seen someone talking about 10 year survival.  I was told by my oncologist that if it doesn't return in 5 years, that I am actually "cured".  I understood that for TN's, the risk goes down tremendously after the 5th year.  So what is this, something totally new talking about 10 year survival for TN's.  I am so looking forward to making it to 5 years, once at 5 years, I am going to consider myself "cured".  Didn't we all learn that together and talk about it on this website about how lucky we are that after some years, we will not have to worry abou recurrence.  By the way, mine was basal-like, which really scares the shit out of me!

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited May 2013
  • PeggySull
    PeggySull Member Posts: 686
    edited May 2013

    Lovely face,



    It could be that you are eating the right things but not enough olive oil. (Also are you getting healthy carbs, protein and fat at each meal?) The Meditteranean Diet has some research behind it featuring olive oil for BC survivors (see The Pink Ribbon Diet by Flynn and Barr.) That might help with the symptoms. As for not losing weight in April, that could be the normal plateauing everyone in middle age hates and it's at this time I have tended to give up and go back to my old eating habits. I've been eating healthy and exercising for three weeks now and lost 5 pounds. I'm trying to gear myself up for the fact that I won't lose that much in the next three weeks.



    Also, exercise in the morning, even if you have to set the alarm 30 early is said to boost metabolism.



    As for recurrence stats, my MO said that as long I am eating right and exercising I should ignore the stats for TNBC because the research on our type of BC hasn't been going on long enough for the stats to be validated. If I do look at the stats, then place myself in the survivor category. No use worrying about something that may never happen. (Easer said than done).



    My therapist, who is an expert in Post Traumatic Stress Disorder, considers the diagnosis and treatment of breast cancer a high risk factor for PTSD. Some of the feelings that are scaring you may be flashbacks. If they are, if you can focus on the sensory here and now, it could help. She also taught me to keep an orange in the freezer and to hold it for a minute or two when i'm very anxious and that seems to help ground me in the present.



    I hope that at least something in this overly long post resonates with your intuition about what is going on.



    Peggy



  • natL12
    natL12 Member Posts: 135
    edited May 2013

    lrm216 and PeggySull Thanks for the info. I will pass these along to my sister.

    Lovelyface  (what a nice moniker)...Sorry you are going through pain and worry.  You know everyone on this forum understands and empasizes with you.  Please keep us posted.  Nat

  • mitymuffin
    mitymuffin Member Posts: 337
    edited May 2013

    Inmate, I've been thinking about you and hoping with my heart that you were doing well.  I don't visit this board (or any board) often anymore, but I really want to know how you are doing so I will check back.

    Bak, Lovely, Luah, OBXK, LRM216, Titian and all of you, I am so grateful for the encouragement you gave me in the past and I think you are fine and brave. For those struggling through tough treatments, my heart and encouragement are with you.

    My Onc has me on a once a year check-up schedule now, which makes me feel a bit abandoned but also happy.

  • schatzi14
    schatzi14 Member Posts: 1,647
    edited May 2013

    Lovelyface...I sent you a PM...hope that is OK.

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited May 2013

    Checking in to say that Gemzar is fabulous - my tumor markers have dropped from 2000 to 275 over three cycles! 

    Wishing everyone good days and good treatments!  And don't give up - I thought I was doomed in November and  now my brain mets are gone and my cancer is responding well to treatment.  It's a beautiful thing!

  • schatzi14
    schatzi14 Member Posts: 1,647
    edited May 2013

    LuRVing....best news ever...congrats!

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

    Luv, Woohoo! Happy dance for you!

  • GuyGirl
    GuyGirl Member Posts: 182
    edited May 2013

    LuRVing that is fantastic news.  Dawn so glad we heard from you this week. 

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

    Think of you often, Mity - and will continue!  Be well. 

  • PeggySull
    PeggySull Member Posts: 686
    edited May 2013

    Adding to the gemzar related tumor number congrats! How was the treatment itself in terms of SEs?

    Don't revisit SEs if it rains on your parade though.



    So happy for you!



    Peggy

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

    Luv:  Wonderful, terrific news.  I am so happy for you.  You are so right - never, never give up!

  • Lovelyface
    Lovelyface Member Posts: 674
    edited May 2013

     Oh you all lovely ladies, all of you, thank you so much for sending me such wonderful posts, and each and every one, incuding the PM from schatzi14, are very informative and may be able to solve my fears and problems.  Inmate, honey, you are still fighting so hard, I love you so much.  You are one heck of a beautiful woman!!!  Inside, out.  I am so proud of you!   Peggysull - your post contained soooo much good info.  As soon as I finish writing this, I am going to check out the Pink Ribbon Diet by Lynn & Barr.  I bet that's where my anwer lies.  This weekend I will go and buy a real good olive oil.  I saw Dr. Oz show regarding Olive oils, and became really grossed with it.  He said they had done a research on thousands of store shelf olive oils and found many that were not olive oils.  They found things such as garbage, diapers, poop, etc. when they analyzed some of the olive oils.  Earlier regarding fish, when the revelation had come that when fish came from China, they were breeding the fish in sewer water. Having heard about olive oil, I totally decided I was not buying any imported food items anymore. I don't know what crap they send us here to USA.  We are the largest consumers, and they have to meet our demands, so they send us crap.  Dr. Oz says that if you put your olive oil in the fridge, and it does not become solid, then it is not olive oil.  I tried, the one from Trader Joe, and it did not solidify, ever since then, I stopped using olive oil.  I just got something from Costco, just a regular oil, and am using that since.  Dr. Oz also said that if olive oil is real, it will be highly priced.  I will pay for a highly priced one and check it out by putting in the fridge.

    I wouldn't doubt it if I got diagnosed with PTSD, it sounds like it.  LuvRVing - good to see you here again. I see that you are still your very strong self.  I am so happy for you, girl, I am certain you will get out of this, you and Dawn both will one day have survived this.  Linda - hello!!!!  All of us oldies on this topic, still here, eh?  Tazzy, OBXX..... anyone that I have missed, sorry. Lovely finding everyone here.

    Schatzi14 - I will PM you.  Thanks so much.

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited May 2013

    Peggy - no problem asking about the SEs.  Honestly they are not too bad.  I have plenty of anti-nausea meds and I take them all to avoid puking.  The chemo is rough on my RBC and WBC, they had to cut the dose in half and I had one transfusion.  I've been able to do most anything I want, even the same night as treatment I've gotten on an airplane and headed to a resort. 

  • PeggySull
    PeggySull Member Posts: 686
    edited May 2013

    Wow, you are amazing!

  • Titan
    Titan Member Posts: 2,956
    edited May 2013

    Luv....I think I am speechless....soo good to hear the Gemzar worked for you...this is awesome news...we all need to hear this....proud of you sister!

    Peg..hear you on the ptsd....I picked up a book on it at the library but it was basically about soldiers....I wanted more....I still have those "shaky" feelings at times...and yes..certain things trigger them....the weird thing...coming on here doesn't bother me at all....I think it just makes me stronger.

    I can't just go on living my life without coming on here and checking up on you guys...

  • Lovelyface
    Lovelyface Member Posts: 674
    edited May 2013

    Thanks Nat - for liking my moniker .... I hope it doesn't sound too proudful to name oneself "lovelyface", but at the time I was having chemo, I told myself that I had in fact a lovelyface, therefore, chose that moniker.  Positive reinforcement when everything else was not so great. 

  • Reality
    Reality Member Posts: 782
    edited May 2013

    Titan - I feel the same way about being here with everyone on this thread, and several others. I have been depressed at times, to the point where I thought I just did not even want to acknowledge that I need support. The last time I "disappeared" from "our community", I was "gone" for four months. I missed everyone so very much, and was welcomed back with open arms. 

    Thanks to all

  • Reality
    Reality Member Posts: 782
    edited May 2013

    Luv - so glad the Gemzar is working. I wanted to stay on Gemzar as se's were very tolerable - except for the one I could not feel - very low white count. I had to self-inject neupogen in order to continue Gemzar. My body hated neupogen and fought back with lots of se's. One scan showed that Carboplatin with Gemzar was working for me - lesions in my lungs actually shrunk! In fact, before the scan, I was considering stopping treatment, but decided to continue as I was so excited about the significant shrinkage. But, my body could not handle carbo. I had to do neulasta and have blood transfusions on that combo. My onc was hoping the Gemzar alone would help me - but recent scans show increase in lesion sizes and new ones....oh well, on to Xeloda. 

    Best wishes for continued Gemzar success! 

Categories