Calling all TNs

NavyMom

((LauraJane)) Clueless as what to say to add my support.  Hoping that Avastin works for you.

Navy

Lynn18

Laurajane:  I agree with mitymuffin; there is a lot of love for you here.  I hope you will get lots of support from the stage IV board in addition to continued support from us here.

Suze35:  I am glad the storm was not too bad for you. 

Paintingmywaythru

Laurajane..here's hoping that the new med will kick things back...so sorry and sending you big hugs..we all love oyu here and please keep posting with us.

christina1961

Laurajane,

Please keep posting here to let us know how you are doing.  I hope the Avastin works - I know it has been very helpful to many Stage 4 patients. I'm so very sorry you are going through this.  Hugs, C

LRM216

LJ:

I am praying that the drugs kick in and perform their magic.  You will not leave our minds and thoughts for a minute - no matter where you post - we will follow your progress with love and all of our strength.  There is strength in numbers, and, babe, you've got numbers of us pushing for you.

Linda

Babs37

Laurajane- My heart goes out to you. I am so sad to hear what you are going through. I admire your courage and spirits and hope that the next treatment will kick that cancer out. Stay strong. We are all here for you.(((HUGS)))

Anonymous

LJ-F! F! F! (in your lingo) Sorry, that's as polite as I can be. This just Ss and I want to just scream in frustration with you, for you, beside you... how about a group {{SCREAM}} about this MF disease.

Of course, it doesn't change anything, but it's nice to think it at least gives a nano second of relief.

Don't you dare stop posting in here--- there are too many people that think about you on a daily basis. Get the support you need from the Stage 4 gals, but don't forget to provide updates here as well, even if it's just to Copy/Paste from one thread to another. I know what a drag rehashing this crap can be.

Well, my back is out again, I am sitting here gasping in pain and I will probably have to stay in bed for the day, as I'm walking like the Hunchback of Notre Dame. I will spent a good part of that time thinking about you, LJ, and wishing you whatever peace you can find with the crappy cards you've been dealt.

F*ck Cancer.

MBJ

Heidi:  Thanks once again for putting into words what all of us are truly feeling!  Sorry your back is out again-since my little boating accident my left shoulder has been in constant pain so I am right there with you and hoping it subsides soon.

Suze35

I hope its okay if I vent for a moment...

I just called my life insurance company and requested the paperwork for my terminal illness benefit, as I want it around to send in as soon as possible should I reach that point.  And I am just heartbroken, sitting here crying.  I am thinking of LJ, who should NOT BE GOING THROUGH THIS, and all of us women who have to fight this disease and SHOULD NOT HAVE TO GO THROUGH THIS, and it makes me so sad that I have to even "get my ducks in row" like this when last year at this time I was planning my DH's 40th birthday in Las Vegas, first class tickets, first class hotel, dinner at Joel Robuchon's.  I have the most beautiful dress set aside for that dinner, with gorgeous 6-inch snakeskin shoes (my guilty pleasure) that I will probably never wear at this point.  Such trivial things in the scheme of things, material pleasures that are meaningless.  I guess it is the interruption of my life, and OUR LIVES, that has me so very sad.

I just don't know where I fit in anymore, and it is killing me. 

LJ - you are in my thoughts every day, and I am sending you all of the positive energy I can to help you fight this FC.  I meditate every day, and I always spend time focusing on my fellow sisters, and you are central in that. 

Thank you all for listening.  I'm sorry if I haven't been the best poster these days, I'll get through this.

Babs37

(((Suze)))..... When 1 of us is down we all feel it together................Hang in there. XX

 I think that after the group "scream" with Heidi we need a big group "hug".......

JenC

Hi ladies.  Hope you are all doing well.  Just had my quarterly check and was told everything seems fine.  Why does that just not put my mind at ease.  "seems fine" sounds like "might be or should be" I know there is nothing I have checked umteen times for lumps, bumps etc.  But still drives me nuts (and just had a mamo 3 months ago) Never leaves the mind I guess.  Hope you were all safe on the east coast with Irene this past weekend.  Have a great day.

Jen

Fighter_34

My thoughts are with LJ.

There is nothing I can add that everyone else hasn't already added. Babs37 said it best when 1 is down we are all down. (((((((((((HUGS)))))))) I hope you can feel me squeezing you!

ksmatthews

LJ you are in my thoughts and prayers!  Stay strong and ((hugs))

Lovelyface

LJ, (Hugs) (Hugs) (Hugs).  There are lots of Stage 4 sisters who are doing well and going on with their lives.  I hope the drug kicks it in its tracks this time, absolutely, it has got to. You sound so calm and serene, dear and I am very proud of you for your courage and strength.  When we are faced with huge challenges in life, we are also given lots of courage and strength, I have experienced that in my life.  There is always the bright sunny morning after a dark night, so the morning shall come again in all our lives.  Heidi - You've said everything that I wanted to say - well said, Girl.  Although I want to not only say it, but SCREAM IT.  What the F.....k is this F.....ken disease........ and I don't apologise for my language either!!!!!!!  If we could beat this FC with a bat, I would travel to all your houses all over the nation and beat this sh....t out.

westieluv

Thank you to all the ladies that responded about my Chemo treatment question for my Mom.

To answer some of the inquiries, my Mom is 71.  Yes, the doctor did tell her she was a little on the older side for this TN diagnosis, but I guess anyone can have it.  I just sent off my blood in the kit for the BRCA1/2 gene mutation testing kit.  Have to wait for results on that.

There seems to be a question still as to whether the HER2 status is really negative.  They were to rerun tests on the tumor to recheck the Her2- status.  I assume it is still TN, because no one has called her to say otherwise.  She goes back to see surgeon on Thursday for possible drain removal, so hopefully all the results will be back by then.

Thank you all for the support.  I know she can muddle thru the chemo, but she doesn't have to like it.  I hate cancer.  There's way too much of it in my family tree. 

Paintingmywaythru

Suze 35  What a difficult thing to do. My heart goes out ot you. I know you also posted about scan anxiety and headaches. How are you feeling otherwise?

And GDI...wear the dress and shoes and be in the moment flaunting it!

It s...cks to have to know that all of us dear women are going through such  overwhelming worries and sadness. Yes, it doesn't leave our minds even when I try to kick it away, somehow there is a quiet moment and it creeps back in again.

I did get my bilateral breast MRI scheduled for the end of September. There was no problem with insurance..just that the doctor thought it would cause me anxiety and false positives and might not be covered.

I am sick of self advocacy and wish we all had some specialists in our back pockets who adovcated for what we needed.

Have had a mouth ulcer since day 2 psot chemo...now think I may have a second but I am treating them and that seems to be keeping everything in line.

Heidi so sorry about your back...we all seem to need a lot of rest.

MBJ Hope your arm is OK.

mitymuffin

Suze 35, You are brave, and thoughtful. Getting needed information, when its scarey, is such a loving action for your family.  I admire your intelligence and guts and I hope you never need those benefits (at least not until you've lived a long, long life.) And yes, wear that dress!

cc4npg

I am very sad...angry...and a whole host of other feelings right along with the rest of you. I try not to be online as much on purpose but my heart and prayers go out to you Laurajane. Heidi said it well...and Suze35 I am so sorry you are going thru this. It is not fair..not to any of us...and one thing we can count on...our group will unfortunately keep growing as more are newly dx. Still though we must keep our heads up. It is my sincere prayer that we see a shot to prevent this cancer coming very soon. I would like nothing better than to see this forum someday never have any traffic....never to see another person post their stats again...never to hear another of us is hurting.

Lynn18

Suze35:  You have summed it up so well.  You are right, none of us should be going through this.  Yet, here we are.  I hope you never need that paperwork--and I hope you can take a break from this and wear that dress and your shoes and go somewhere fun . . . just to get away.  I also think about Laura a lot and hope she is OK. 

mccrimmon324

Laura Jane, I know I'm new to the threads and you don't know of me but I wanted to say how sorry I am that your going thru this sh*t!  I'm praying for you everyday that your new treatment will stop the FC in its tracks and you can get back to enjoying your life. 

TifJ

Fighter_34- I just wanted to say Congratulations! One year ago today, we both got the shock of our lives. I'm so glad you are doing well and hope you have a wonderful day!

Your diagnosis buddy,

Tiffany

Lovelyface

Ladies

Remember the lump which I had felt earlier, well, I still feel it very much still there.  MRI - did not show anything on 7/14.  Mammogram - did not show anything 7/25.  Then the Rad. Onc. felt the lump too, she sent me for US.  The technician could not feel or find anything in the area to which I am pointing to, so she called the Radiologist in the room.  He checked for a minute and said there was nothing.  I was not satisfied, so I wrote an email to this doctor I know, she is the Chief of Radiology at the hospital, who said to me that they cannot entirely go by images, maybe I need a biopsy.  I then went through the whole chain of conversations again with the US doctor and the Rad. Onc. who had felt the lump.  Yesterday, she said that she feels it is not a lump, but part of a scar.  She also said to me that my MRI is due in 4 months time, so I should not do an invasive biopsy at this time.  I asked her whether my MRI is accurate, since I have a deep dimple and when I lie face down on the MRI machine, is it capable of picking up lumps even from the deep folds?  Nobody is able to answer that question for me.

This morning the lump area had a slight pain, which should not come from a scar.  This lump feels exactly like my first one (the one with BC), so I am really very confused and worried. I asked them how they will do a biopsy if they cannot see it on the US, they said they will do where I point to.  The Rad. who did the US said to me, well your symptoms don't suggest it is anything to worry about, such as the lump is there sometimes and not there other times.  I said to him he was wrong, that is exactly what a BC lump does, it is there sometimes and not at other times.  The lump itself has no pain, but sometimes around the surrounding areas, you can feel some pain.  He also said that there is no way I can have a lump, since I just finished Rads in March...... what is he saying?  Of course it is possible, don't you think?  I have been touching them all the time since my DX, so I know this is not part of the other Hard scars I have.  The scars are flat and hard, this seems roundish and like a little bump.

Ladies - would you suggest I get a biopsy done?  Another complication is that my surgeon, the best one around here is having a hip replacement surgery and won't see me until Oct. 6th. Please suggest whether I should go get a biopsy?  If I get a biopsy and God forbid it is positive for BC, then what will I do without my surgeon?  It is a big shame, but really, I think we only really have one good Breast surgeon in our group.  I wouldn't even dream of going to anyone else.

Please tell me what to do?  I want someone to tell me what I should do, I am incapable of making any decisions in my life anymore.  Thanks.

Suze35

Thank you for your thoughts Ladies.  This disease just sucks.

Lovelyface - I PM'd you.

My MO moved my brain MRI up to tomorrow at 9:00.  She is fairly convinced it is the Avastin, but just wants to rule out cancer.  If it is all clear, she'll lower my dosage - because I'm small, she feels I'm on the borderline of the dose and may just have too much.  Fingers crossed.  I'll post when I hear, probably tomorrow night.

Lovelyface

Suze, my dear, I know you will be all pins and needles until tomorrow night, as I can only imagine, but all of us are going to go through this with you.  I am sure your MO is right that it is the Avastin, and I am so glad that you are getting this done to rule out the ugly thing.  I can't wait to hear the good news.  Good Luck and my Best Wishes.

Thanks so much for your PM on my issue.  I will keep you and everyone posted on my situation.

Kymn

Hello ladies, First I need to apologize for not posting here lately, after a couple of TN sisters took a turn for the worse and the one who recently passed away I just flat out got scared. I didnt want to read anything on Triple Negative, I didnt want to know anymore about it, I just dont want to be it. I know it doesnt mean a death senctence and I know there are lots and lots of women who do not get reaccurances with TN but it all seemed so daunting a month ago. Now I am back and LJ I am so sorry with what you are going through God I wish there was something we could do, more we could do!!! Suze35 keeping all positive thoughts for you. so sorry to see all the new ladies here, I just know this wonderful group of women has made you feel welcome and shared some vital information with you to help you along your path.

I am now 18 rads into 33. I am getting a bit of buring under my boob and definelty feeling the fatigue. Am now taking Fridays off work so I can relax and catch up on some sleep.

On the home front my DD started grade 4 today and my DS into grade 10 I just cant beleive that I have a high school student wow where does the time go.

well girls hope you have a great tuesday and remember

 

You Never Know How STRONG you are.....Until being STRONG is the ONLY choice you have

 

 
 
  
 

 

Summer38

LJ - You're in my thoughts everyday. I'm sorry you have to go through this but know we are all sending you lots of positive vibes.

Suze - Good luck tomorrow!

MBJ

Suze:  Sending you many good thoughts your way!!!

Laurajane:  We are all thinking of you!!!

Teka

Suze35,

May tomorrow fly by with good news.

Fighter_34

TifJ- thank you so very much. I hope you had a GREAT day as well. Praying for many more stress free days for us ALL.  My girlfriend and I took the kids to the zoo and out for lunch. FUN!

I played hooky from work.....

Kymn-I know how you are feeling. However, we are strong and we can deal with it.You guys are on my mind a lot these days.

bak94

Lovelyface, I do think you should get the biopsy sooner than later, just so you can be sure and be able to move on if it is nothing. It is too difficult not knowing and being worried. I am thinking of you and sending hugs!

Suze35, glad you will have mri sooner. Do you have avastin weekly?I had my first one last week. I think I am having it every 3 weeks, but I am not sure, I can't believe I don't remember! I may not have even asked! I am getting zometa every 3 weeks. I never had the fsh test so my doc ordered it to double check, as with the first test I was her2 +1, which the lab said they don't usually do the fsh test with that score, but my doc wanted to make sure I am her2 neg. I keep forgeting to ask why he decided not to do the carbo, but I think it has something to do with me being 3% er pos, but not sure. Or he may be saving it for after surgery. Man, I feel like I need to get my questions down, as I am still confused.

Hi kymn! Glad to see you are getting through rads! It is tough finding out what some are going through, and it just isn't right, sometimes we just need a break.

LauraJane-Thinking of you. I hope the abraxane has little side effects for you, and is kicking cancer a$$. I hope you are able to get relief from all the pain. I have had 3 weekly abraxane so far and one avastin. I must admit so far it has been very tolerable, I hope it is the same for you. I will be having a scan after treatment number 6 to see if it is working.

Boy, it sure feels like summer is over! It has really cooled down here and is getting dark out so much faster! I just love the long summer days, hard to get used to it getting dark earlier!