Calling all TNs

laurajane

MBJ- it's sunny and beautiful today crisp cool and clear blue skies. With all of the leaves changing it is just gorgeous. I hope your move is going smoothly.

Suze- I'm so happy you are feeling so great. Sounds like a lovely time with your kids. I sure hope you get the Tig too!

Teak- I feel the same way.

Lovely- thank you for sharing.

Lush- my onc told be there are no other options for me as far as chemo at this time. The good news is that the combination of my healer and this chemo is really working. Skin mets down barely visible, and tumors way smaller. Plus my left arm looks normal , no swelling, looks just like my right arm for the first time since last July. I keep staring at it like it's a new body part. Lol.

Mity- it's always so nice to see your smiling face on here.

Heidi- welcome home! You're like the "icing on the cake" just love all of the laughs. Thank you.

Navy mom-great to see you too!

Slaying- so glad you are getting the scan so you will be able to relax. I'm hoping everything is fine.

Titan- I'm right with you on heidis humor

Sugar-"nothing to post", I love reading "doc says ever things fine" these kind of posts brighten my day.

Flautelee- I am saddened you are having to face this beast again. We are here for you.

Leeann-my jaw just dropped to the floor after reading about your ordeal. Man, that's horrible. Sad you had to go through that. I remember once about a year ago they almost gave me a chemo I had never heard of.

Michelle13- nice to see you

Mccrimmon- what a wonderful way to celebrate, going to the most romantic city in the world.



I hope I haven't forgotten anyone. I hope you all have something happen to you today that makes you smile.

The best thing that happened to me yesterday was meeting up with a bunch of my gal friends for dinner. We had so much fun, fabulous wine, good food and laughter. Yup, the best medicine!

Luah

LJ: So glad to hear the healer/chemo combo is showing good results - that's wonderful. And you're right about the best medicine being a night out with gal pals!

Flautalee

Westieluv--I am having 4 rounds of Taxotere/Cytoxan every 3 weeks-- 4th will be Oct 28th (yeah!), followed by 28 radiation tx beginning the Monday after Thanksgiving. For my first triple neg tumor (2000--I am considered in remission from that tumor) I received 4 rounds of Adriamican/Cytoxan every 3 weeks. So some things are still the same, some are different. I haven't need Neulasta because my white blood count actually is going up with the Taxotere/Cytoxan--I think my last count-before I got in the chair for round 3 was 15.9! Has anyone experienced this?



Westieluv-you are a wonderful daughter to be checking all this out for your Mom. She is very fortunate to have you as her daughter.



Would someone explain to me what dose dense chemo is? Thanks. I just have so much trust in my doc so I didn't ask about it. He has kept me alive for 11 years! This time has been easier--my only nausea was when I became hopelessly constipated after round 1. Also, so far I haven't had any neuropathy in my fingers which is really good because my life is playing the flute. I learned

from these boards that Taxotere has fewer neuropathic side effects than Taxol, so this made me trust him even more. At least as much fatigue this time--I need to sleep at least 10 hours a day. But I'm 57 not 46 this time. Best to all of you--have a good weekend!

michelleo13

Flautalee, dose dense means you receive chemo every two weeks instead of the traditional three week cycle. To enable this, you get a shot of liquid gold (aka Neulasta) the day after your infusion to boost your white blood cell production. I call it liquid gold because I was shocked when I saw the claim go through my insurance. Dose dense has shown to be more effective than the traditional cycle. I'm not sure how they determine who is a candidate for it.

westieluv

Suze & Luah ~ Mom is 71.  Yes it was her WBC that tanked.  She also saw her RBC drop some and they encouraged her to take iron supplementation.  I am frustrated that the ONC in her area did not send her for a nutrition counselor that specializes with chemo patients.  They just tell her to eat whatever she can tolerate and stay away from spicy food.  Mom hasn't been the best in the diet department....so any steps she makes are improvements.  They did give her Neulasta the day after the 1st chemo round and she got the 2nd treatment on Wednesday with her Neulasta shot yesterday again.  I guess if doing the 3 week is all she can do, then it will have to be enough.  ONC never talked again about the change in timing and Mom doesn't know enough to ask some questions.  She is a compliant little lady and just goes home.  I live 2 1/2 hours away from her and the distance and inablility to be there more for her is killing me.

Teka

laurajane,

Excellent News!   

LRM216

LJ: 

I second what Teka wrote - so happy to hear that things have taken a turn towards the better.  That's wonderful news!

Linda

Titan

OH yeah LJ...!!! 

OBXK

I'm leaking! I had my mx scars under my arms revised last Wed. Saw surgeon yesterday - all was well. Tonight I took a bath and afterwards I sprung a leak. Like a seroma draining. I taped a panty liner over it and put 2 binders on. Had to change my sheets down to the 2nd mattress pad.

Anyone else ever spring a leak? I guess I call the BS, if it hasn't stopped by Monday.

Saw an internist today for a colon evaluation, I now have a colonoscopy scheduled for the 8th.



I am so tired of going to doctors!!!! Next week, I see 4. Enough already!!!

Thanks for listening. I'm tired and fussy.

mccrimmon324

OBXK-when I had my lumpectomy I went to bed one night and woke up completely soaked down to mattress, hubby was ready to take me to emergency room, called the on call breast surgeon and he said it was normal, just call your BS. Apparently this happens frequently and you should be fine. Hope all goes well for your colonoscopy

Suze35

LJ - I am so very glad to hear you feel the Halaven is helping you out - Yay!!!!  Keep us posted when you take a break from soaking up all the time with family and friends .

OBXK - did you get your implants in?  If so, that's an obvious concern although nothing that can't be fixed.  If not, perhaps you had a pocket of fluid that is draining?  Let us know what the doctor says!  And good luck on your colonoscopy - good for you for scheduling one!  There is a small link between the two cancers, and that is such an easy one to catch early and treat, proactive is the way to go.

Westieluv - given your mom's age and the fact that she already tried Neulasta, it does sound like your doctor is trying to balance her quality of life.  I know that with the WBCs under a certain level, they simply can't do the chemo, and unfortunately, there is just nothing to be done to up them with diet .  How does your mother feel about this?  I would at least have an honest conversation with the doctor that he needs to keep you all informed as to WHY he is making these decisions.  I know it is worrysome not to do what we keep hearing is the "best" regimen, but from what I understand, the margin of effectiveness between the two isn't really that large.  Good luck to her.

Lovelyface - at this point, I'm not sure the Oncotype would be of use for you.  It is really only used to determine if ER+ patients would benefit from chemo - and you've already been through that.  It would tell you if you have any ER positivity, but would that change your mind about taking the drugs given your reaction to them?  My guess is the number is high (like all of us), and it would worry you, even though it shouldn't.  Plus I really don't think your insurance will cover it, and the test is pricey.  My vote - know that it really makes NO difference and move forward.  I say this with much love and affection .

~~~~

Off shopping today for a new comfy chair.  Time to baby myself while I read and do my needlepoint .

OBXK

Suzy - I hope you find the perfect chair. I have a ladies sized Barcalounger, it is easy to push into recline and you don't have to use a lever for foot rest. Happy hunting!



Mccrimmon - thanks for sharing. I can imagine your husband being freaked! Luckily, I didn't leak through my binding job!

kathyrnn

*waves hi to all the ladies*



Flautee, may I ask a question. First I'm sorry about the new tumor! Did you have a mammogram before the MRI, and did it show anything? I can already see I'm going to have to battle with my onc. If I want annual MRI's but I have dense, fibrocystic breasts, so I'm concerned about mammo's catching anything early. Also my WBC was high during my Taxol treatment.



Lwarstler, I'm sorry for the roller coaster ride they put you through.



Heidi, thank you for that article and I love the humor, it's my best therapy.



Mccrimmon, thanks for the info on onco type scores. I had never heard of them. Your trip sounds wonderful!!!!



Westieluv.....((((HUG))) I'm sorry you live so far from your Mom. Can you have her give her doctor permission to speak with you, so you can call him and help her with her questions?



OBXX, should we change your name to Titantic. Actually, big thanks. I'm having surgery in a couple weeks and I'll make sure to sleep on an incontinence bed pad.



LJ, so happy to hear your positive response! (((HUG))))



Suze, glad to hear the SE, have been mild. I laughed when I read about the comfy chair. I came home with a big comfy overstuffed recliner last night. It's amazing what you can stuff into a Toyota Camry, when your determined enough!

jazz3000

Hope everyone is doing okay and good things are happening for you today. 

lee - I was actually wondering the same thing. My onc has suggested the dose dense chemo and I sat there staring wondering what she was talking about. She suggested I come in an learn to give myself the shot required the day before each chemo treatment. Wasn't sure what direction to take as she said the traditional chemo treatments were also an option.

Was glad to hear they prove more successful if I understood michelleo correctly. I'm thinking I may opt for the dose dense if that's the case. I just wasn't sure how agressive the treatments were and if they hit you harder than the traditional chemo, (i.e., hair loss, vomiting, etc.).

OBXK- My BS tells me leaks are a way of your body letting you know the fluid has found a way out. After springing my leak it took a couple of days but it sure started feeling better. I hope that's all it is and nothing more. Don't you love the kotex pad look though? LOL

mccrimmon - Last time I leaked like that was when my water broke right before my daughter birth. ( I am an ex-smoker - and quit before all this started. maybe I shouldn't have given them up huh?)

Heidi- you make my day. I love your creative side and how you're using the little stuffed companion you took along to share in your pics. Tickles me.  Did you say, you're on your way home, or off to a different yet more exotic region ? Playing some catch up on the last few days postings. Guess I'll figure it all out as I read forward. 

westiluv- I hear people wishing their family was more involved and aware of their conditions all the time. You are so knowledgeable about your mothers circumstance I just know she appreciates and loves you. Just knowing you've taken the time to understand and help probably brightens her days, whether far or near. I know she has to love you to pieces.

LRM216

Kathyrnn:

Are you referring to breast MRI's or general MRI?  I ask only because I get a yearly breast MRI , along with my mammo's every 6 months (cancer breast - then next six months - both) which my BS informed me insurance allows for any TNBC patient.  

Linda

mccrimmon324

Lovelyface,

I agree with Suze, don't ask your onc for the onco type test, I didn't realize you had already found out if you had any ER+, that was the only reason why I had suggested it. Not for the score.  My radiation dr gave me my score, its folded up and stuck between some other paperwork he gave me, I'm not about to look, I'll just pull it out and shred it.  I can't really do anything more than I already am and will have a full blown panic attack if I see it.  I already have BC on my mind all the time I don't want to make my constant worrying any worse.  I'll just listen to what you ladies have to say.

I start radiation on the 31st, then I won't have another mammo until april, that would be 1 year since my last - I'm 6 months now and just finished chemo, shouldn't I be getting one now?

 LauraJane, so glad the Havalen is working for you.  Love that your working with a healer too.

Hope everyone is having a great weekend.   

TifJ

McCrimmon-talk to your BS. My onc says every year, but my BS said she wanted me to have a mammo every six months for a couple years at least.

mccrimmon324

Tifj, Ugh, I HATE my BS, he has the personality of mud.  However, he was the one that brought up the 6 month time frame and to make an appt with him after I got it done, which I had just forgottenn about until now.  I suppose I'll have to give him a call this week.

Thank you, I honestly would never have thought of him.

TifJ

So sorry you don't like him, but if he is the only one that will schedule every 6 months-might be worth a call! Congrats on finishing chemo!!

Anonymous

Donald and  Daisy Duck were spending the night together in a hotel room and  Donald wanted to have sex.

The first thing  Daisy asked was, "Do you have a condom?"

Donald frowned and said,  "No."

She told Donald  that if he didn't get a condom, they could not have sex.

"Maybe they sell  them at the front desk," she suggested.

So Donald went down to the  lobby and asked the hotel clerk if they had condoms.

"Yes, we do,"  the clerk said and pulled a box out from under the counter and  gave it to Donald.

The clerk asked,  "Would you like me to put them on your bill?"

"Thit No!"  Donald quacked, "I'll thuffocate!"

 
 
 

 
 
 
 
 
 
 

Sugar77

Heidi - this joke really "quacked" me up!  I just read it to my DH and we both got a good chuckle. Okay, now back to doing the laundry.

christina1961

Heidi, that was really cute!! 

Laurajane, I am so glad the healer and the chemo are working!!!  

Lovelyface, Do you know how much estrogen positivity you have?  If not, can they test it again in the pathology department with staining?  I had my original biopsy (core needle biopsy prior to chemo) and was declared triple negative.  I was retested after surgery and was told I have 5-10% ER receptors-   I had neoadjuvant chemo, then surgery, radiation (last one Monday) and am going to start a clinical trial with more chemo next Friday.  Following that, I will be on Tamoxifen.  

Flautalee, I'm glad the taxotere is treating you well!  It is great that you haven't had to have neulasta!! I liked what Neulasta did for me in terms of my white counts, but I hated the side effects - and I think I still some rib cartilage issues from it.

Westieluv, I am the second opinion queen. My onc recommended TAC every three weeks. At my initial diagnosis,  I had a consultation with another onc here in town (I heard he did dose dense) - he was going to do TC every three weeks and said he didn't do dose dense anymore.  After chemo, I went to another state to a NCII hospital where several papers have been published on TNBC and they do AC-T but it is also on a 3 week schedule.  So I have to believe that there isn't much difference in the outcome, either.

Swanny

LJ - Glad to hear the good news. 

Heidi - love the jokes and pics.  Thank you.

All is fine here - had my 3 month with Onc and 6 month mamo.  Everything was great.  Celebrated one year out of chem on Sept 30th.  It is the date I remember the most.

TifJ

Congratulations Swanny!

I think every date associated with my BC is burned into my brain and will never be forgotten!!

Suze35

Kathrynn - that image made me laugh, lol - a chair stuffed in a Camry! Hey, we do what we gotta, right? Heh.



Heidi - hah! You find great stuff .



Swanny - awesome check up!



~~~~~



I got my comfy chair, yay! I sat in every oversized chair/ottoman combo I could find, then went down to the clearance section and found the PERFECT choice for half off! It matches our living room perfectly, and I can stitch, read, nap... Ahhhhh. It's the little things these days .

Anonymous

Heck, I practically *live* in my den recliner. And the den sofa reclines on both ends also. I don't know how I survived all those years in wing chairs!

Anonymous

Powerful stuff...

http://www.godvine.com/The-Inspirational-Story-of-Garvan-Byrne-a-Must-See-731.html

susanella

Hi,

I was just diagnosed as triple negative.  I had a right lumpectomy on Oct. 12.  The tumor was 1.9 cm and 1 of 3 nodes had 1 mm microscopic cells.  The margins weren't totally clean so I am having a re-excision this coming Friday, 10/28.  The surgeon told me I will need 4 months of chemo and 3 weeks of rads.  I will be seing the med. onc. in mid-November.  After reading this thread, I am wondering whether I should be getting a double mx.  I am 57 but have very dense breast tissue.  I am terrified.  Any words of encouragement and hope from other triple negatives with at least 1 positive node would be very helpful.  I am trying not to become a quaduple negative.

Susanells in Long Island, NY

christina1961

Congratulations, Swanny!!!

Susanella, I got tested for the BRACA mutation to see if I was at great risk for developing BC in the other breast. I tested negative - you can check and see if it will be covered by your insurance - the test is expensive.  Even without much family history and a diagnosis at 50, my insurance paid for mine (although I hadn't hit my deductible at that point) - the company who makes the test let me make payments over several months.  I ended up with a unilateral mastectomy because in my case my surgeon recommended it following neoadjuvant chemo. There are several threads on here debating lumpectomy and mastectomy that are very informative.  I'm sorry you have to join us - please make sure you read the "positives about negative" here (somewhere - can't remember where) on breastcancer.org.

susanella

Hi Christina,

Thanks for the prompt response.  I submitted the paperwork for the gene testing but haven't heard back yet from the department.  The surgeon didn't seem to be even considering a rt. mx for me, but she also didn't make much of the fact that I am triple N.  I am so new to this that I didn't even ask about if and when I will get scans during or after the chemo to see whether I should have gotten a bilateral mx.  I know that once I go for the rad, then if I need a mx, any reconstruction is out the window. From the thread, it seems that triple Ns get a hughe amount of recurrence and that the recurrence can already be a stage III even though the person was presumably being monitored!!  I hope I am not making a mistake continuing with the lumpectomy.

Thanks and hugs,

Susanella