Calling all TNs

rachelvk

I've been checking out this thread for a few days, but finally decided to post. I guess I've been rather slow at processing the nature of being triple negative. And the lack of urgency on my BS' part probably added to that. If it wasn't for my parents (a nurse and retired ob/gyn) softly but continuously stressing the word 'aggressive' and urging me to seek a second opinion, I might still be completely oblivious.

I was diagnosed Aug 16. That was after finding a lump on July 12, barely a week after my gyn appointment, where I know he found nothing and I found nothing a day prior. Had my mammo/us July 19, then had to wait 2 weeks to see the bs (I wish I had asked for a second option from my gyn who could have seen me sooner). Her suggestion was to take the BRCA test and wait for the results, which came back Friday as positive (BRCA2). Now she's on vacation, but I'm headed to another surgeon tomorrow. I want this thing OUT!

I guess I could use some moral support at this point. I'm a strong woman, and I've been so buoyed by reading stories and hearing from women who beat it and are living full lives. Yet the idea that this will always hang over me, even if I go ahead with a bmx (my current expectation) is enough to pull me back down. Any advice on handling TN status? I've only read a few pages of this thread, but I'll go back and read some more. Thanks, and good luck to everyone. You've got my good wishes coming your way from here on in.

Anonymous

Eddie! Someone's a Frazier fan!

Titan- my "Butt" explained...lol!

christina1961

Ruth, I am so sorry for the loss of your friend.

Your foster looks like a wonderful dog-very happy face!! I do rescue work, too - it is very rewarding. One of the times I don't think anything about cancer is when I'm caring for my cats and dogs.

Bernie, you have some sweet looking companions!  I loved the picture of your Mastiff/pit mix - he has such a soulful face.

Rachel, I'm sorry you have been diagnosed - it looks like you caught it very early.  Only advice I can give is to be gentle with yourself, rest when you can, and expect to have good days and bad days.  It sounds really simplistic - but it is true.  I try to practice more self love than I used to - don't beat myself up by second guessing decisions, rest when I'm tired, say no a lot more than I used to. 

riley702

Rachel, the only TN-specific advice I can give you is what someone here told me - we only get one chance to whack this effing cancer, so whack it hard. We can't rely on anti-hormonals, Herceptin, etc. We have chemo, surgery and radiation. And TNBC is usually aggressive (bad), which makes it usually very susceptible to chemo (good). Good luck!

MBJ

Ruth:  I am so sorry to hear about your friend! Hugs!!  Very cute dog.

Rachelvk:  Sorry you have to be here but you found a great, strong group of supportive women to help you through this difficult time.  Know that you have caught this very early, and that is the best news possible.  Getting 3 opinions is key to getting the best dr's available.  Make sure they are very knowledgeable when it comes to TN status because it is very aggressive.  Come here to do your research but stay away from other on line stuff that will just scare you.  Most of us have been through chemo, surgery, radiation and are doing fine and I am betting at your early stage you will be fine, too.  Being BRCA positive requires more info then I have and I am sure others will help you with this.  Take the advice given above-be gentle to yourself, learn to say no, and come here to kick, scream, or just share whatever it is you would like to share. Hugs.

rachelvk

Thanks to you all for the support. I guess today was my first 'scream' day, though in a rather muffled, sobbed-filled approach. I'm glad I've kept my wits about me so that I don't just decompensate to the point where I can't do anything, but I need to find a way to shut the brain off every once in a while and let the primal scream (and kicking and punching) work its way out.

Riley - the good thing is, I'm a fencer, and a damn aggressive one at that - whacking comes naturally, and you DON'T want to be on the other end of my foil or sabre!  

riley702

That's the spirit!

OBXK

Hello from the soggy south. My ca1890 home, flooded for the first time

in Hurricane Irene. My heat/AC units were submerged, so no AC. Can't even get on Hatteras island to check the beach house.



I go for genetic counseling Friday. Wondering... Has anyone had their ovaries removed as a precaution? If so, what could I expect.



Hope everyone is high and dry!

rachelvk

OBXK - Good luck with the counseling. I had my session a week and a half ago, and the ovaries part was the big shock for me. Not that I hadn't heard of the risks, but it was tough to realize I might have to consider it as a real option. But I found the counseling helpful overall. Now that I know I'm positive, I've been able to think a little more clearly about why I might want to make certain decisions.

 I hope your homes dry out with no long-term damage. Hoping Lee isn't more than just wet and soggy, and that Katia decides to stay well off shore. Earthquake, huge hurricane and bc dx within 4 weeks of each other... I think I've had enough drama for two lifetimes.

Flautalee

Dear Rachelvick -welcome to our group. Good for you to seek another opinion while your oncologist is out of town. It seems that current therapy for triple Neg tumor is surgery first or after chemo, depending on the size of the tumor. Since you are BRAC positive please go for bilateral mastectomies. According to my PCP, "watchful waiting" does not work. Even though going through implants means a lot of surgeries and procedures that you might not realize at first, when I woke up from my surgeries I psychologically didn't feel that I had lost my breasts. We are all here for you!

cc4npg

Rachel:  I'm BRCA2+ also... there are certain studies (which I'll post links to later) which indicate BRCA+ people may actually have a better survival but again this was a recent study and a small one from what I remember.  However, I have been thru it and it was a real REAL shock to me too. Bilat MX and ooph and chemo here... and the BRCA thing raises our tendency toward other cancers too so don't be shocked if your onc says you have to wear long sleeves year round (mine did.. do I? heck no not with instant menopause!).  I sent you a pm with my number.. call me if you need to vent or ask questions...

tnbcRuth

Titan - yes she was.  She will always have a place in my heart.  Btw, congrats on doing so well on TPTO thread!  I'm trying but it appears cheesecake is not the fix.

mccrimmon324

Hey Ladies, Have a question about chemo.  I just had my 5th of 6th round of TAC last Thursday, this time wasn't too bad except this morning I woke up and I'm physically drained.  To the point of barely being able to walk across the room without sitting down.  I have this happen before but never to this extent.  Is this normal, is it just the cumlative effects?  Also, Steriods, when you come down from them can they make you extra emotional?  I'm a wreck this time and I have no idea why. 

Thanks for any input and enjoy the week.

NavyMom

I think that all chemos have a cumulative effect.  I did TAC, too.  5th tx was the worst.  I think the 6th was probably as bad but the mental knowledge that I did not have to have anymore was enough to pull me through.  All that being said....if you are unsure if things feel normal(whatever that means) always call your Onc and let them know.  And I agree that Steroids can really mess you up emotionally......Hang in there......You are almost done.

Navy

Fighter_34

Hi everyone!!!

Titan-thanks for that wonderful news!!! You made my day!!!

McCrimmon324- the cumulative effect awful!!! I could barely get up the stairs w/o sweating and feeling like I was going to pass out. You are almost at the end though!!!!! ((((((HUGS))))

Cute Dog!!!

Heidi- my next house will have a pool. I love to swim!!!, but for safety reasons it's not practical yet.

Fighter_34

Adding ladies: for those of you taking biotin I have an update.

My nails are longer and stronger. I have cut them twice since TX.

My hair is growing like crazy. I don't plan on cutting my hair for awhile. I just want to see how long it can grow.

I started taking them in March.

Suze35

Back from DC!  We got to the National Building Museum (for a Lego exhibit) and the Smithsonian American History Museum, which I always love.  And walked.  And ate.  A LOT.  My poor DH got mild food poisoning one night, which stunk.  My LE unfortunately started acting up also, but I'm managing that.

Titan - some days, when I'm really in the thick of it, I lose hope.  Stories like your friend's help bring it back.  Thank you for sharing.

McCrimmon - that is your white blood cells in the toilet - and probably some mild anemia - making you feel that way.  By my 4th AC, it was a chore to even come down and sit on the couch.  At the end of my Taxol/Carbo, I couldn't do a flight of stairs without sitting.  Hang in there...

Ruth - I am so sorry about the loss of your friend.  My heart goes out to you, her family, and all of her friends. 

Rachel - welcome.  I don't have much to add, you've gotten great advice.  Well, I'll add - don't be afraid to advocate for yourself!  If you feel something is off, push push push.  It is YOUR health on the line here, not your doctor's. 

LJ - thinking of you.  Read a relevant post on another site from a woman who had resistance to Taxol and was concerned about using Abraxane.  But she gave it a shot, and it worked!  So I'm hoping you are kicking cancer's butt at the moment!

I love all the doggie pictures.  I'm off to figure out this picture posting stuff.  I'll try and put some shots up this week of my dogs and shoes.

Have a good day everyone.

MBJ

OBXK:  So sorry to hear about your home's damage-Hope there isn't much damage and that your other home survived.  Hugs!

McCrimmon:  I only had 6 x TC and the last was a doosy.  Are you getting Neulasta shots after chemo?  It helps, but I was really, really tired towards the end.  You can do this! Hugs!!!

michelleo13

Ruth, so very sorry to hear about your friend.

Rachel, welcome! I echo Riley702's comments re "Whack it hard". Your cancer was caught early which is really good. Because of its aggressive nature, TN often doesn't get discovered until much later. When I hear bad stuff about TNBC, I hear my ONC saying "This is curable." That's what I'm focusing on as I go through treatments.

Kymn

Hi ladies, hope you all had a great labour day weekend. I went camping with the family did some fishing, sitting by the fire relaxing in the sun it was just what the doctor ordered wish I was still there.

Ruth so very sorry to hear about your best friend, I lost mine 7 years ago to the beast. Sure do miss her and think of her often.

Rachel welcome aboard, just take everything day by day, like you heard you will have good days and bad days and then before you know it you will be nearing the end of treatment. I only have 12 rounds left of radiation, had to do 33 and did chemo as well, I cant beleive how fast it has gone by. Now I am trying to figure out what I am to do with myself without all those darn doc appt all the time.

Would love to respond to you all but have to get back to work

hugs Kymn

mitymuffin

Rachel, the only words I can add to what has already been said are "Keep fencing." It will keep you strong emotionally and physically, and even if you have to drop down with your training (likely, during and for a while after treatment) and cut your sessions short, you will feel better keeping it going. There are studies showing that exercise also helps make reoccurances less likely.

Ruth, I'm so, so sorry. 

McCrimmon, I found the treatments to be cumulative.

Paintingmywaythru

Ruth, so very sorry to hear about your friend. It must be such a terrible loss.

Titan thanks for your uplifting story.

Rachel, welcome! Keep on fencing. This is a hell of a ride and getting a few opinions about it all is excellent. Also, take someone with you who is very sharp adn can stay focussed as there is so much info you will be reeling from. Everyone here has great insight and can help guide you.

Suze 35  So glad to hear you had a great weekend.

Love all the animal posts...will have to add my cat.

Kymn..wow you are almost there...how are you faring making thos e daily trips.

I have my fourth  and last round of TC chemo Friday and then go for 33 rads.

I have been unhappy with my care and met a great radiation oncologist today. She was so so thorough and  provided great information. She is at a local center which opened 3 years ago so has all new equipment and my friend who is an oncology researcher at MIT Whitehead Institute is going with me. She met the first radiation oncologist and we both immediately looked at each other and knew we were in a better place. I am waiting until I meet the radiation oncologist from Mass general next week to decide but am also thinking of swithcing my oncologist to Dr. irenen kudor at MAss General.

Has anyone switched oncologists after chemo?

I think I need to have confidence in someone and I realized I should consdier switching for follow ups. I will call MGH and see if I can do that.

OBXK..hope there isn't too much clean up to do....these things can be overwhelming.

Well going into round 4 trying to battle my way up from 85% chemo should be interesting. Only one mouth sore and I treated it aggressively and it is gone. Will have to communicate with the onc about it tomorrow in the hopes we can go higher on dose.

My best to everyone.

tracie23

Hi Ladies I have a question..... do you think it is possible to have a seizure in your sleep? About a month ago I had a whole weekend where I had vertigo , this weekend I had a horrible dream that I was having a seizure and I swear I could feel my hands and feet moving and my chest muscles flexing, I kept trying to call for help and I couldn't get the words out I don't know if really was just a dream but I am sooooo off right now... I woke up yesterday and I felt like a train hit me I couldn't keep my balance and I felt like I was so hung over. I don't know what to think I haven't had chemo since Feb. I don't know what to think..

MBJ

Tracie:  I would contact your dr. and have them refer you to someone to make sure it isn't aything to be worried about!

Paintingmyway:  I changed hospitals and surgeons in the middle of treatment and I am so glad that I di-I say go for it.  It made such a huge difference in the care I received.

Suze35

painting  - yayyyy on the last chemo!!!  I'm so glad you were able to keep the mouth sores to a minimum.  Let me know when you are up to lunch so we can celebrate!  Is Dr. Kudor the oncologist we both saw, the Irish one?  I say make the switch - you know how I feel about getting the right care!!

tracie - that is something I worry about myself, to be honest.  I'd say it was a waking dream if you didn't have after effects, so I would definitely ask the doctor.  I hope you are feeling better.

MBJ - you must be so excited for your move!  I hope it goes smoothly for you.  Chemo brain, where are you moving again?

OBXK - I'm so sorry you suffered damage with the hurricane.  I hope clean up goes fast and smooth, and that the beach house is okay.

Paintingmywaythru

MJB  tried to switch to MGH mid-chemo but they woldn't let me but for radiation I can switch and I will see if I can switch my onc post chemo.

Suze 35...yes the Irish doctor at MGH..I am going to call tomorrow and see if I can change. Will say that my friend and I were very impressed with the radiation onc at Winchester and their thoroughness and facilities but she and I will go to MGH next Tues. Theradiation onc today was very surprisedthat my PCP didn't do an annual pap and suggested I only need a colonoscopy once every 10 years.( I am 56) She told me to go back to her and demand to have them as routine care.I liked her spunk. She also said I should have had a bilateral breast MRI prior to surgery but she was relieved that I was having one at the end of Sept. so I liked that she wasn't afraid to speak her mind.

Tracie 23 ...sounds like it would be very useful to get a referral to seea medical specailist. Sounds very disturbing.

Anonymous

tracie 23- yes, you can have seizures in your sleep.

I had a seizure after my treatments ended. Afterwards, I did a lot of reading on the subject. I never had another one, but I had VIVID dreams in which I was certain I was having one. In my case, that wasn't true (hubby was awake right next to me, and I asked him upon my waking). I think I was just so terrified of having another that the thought literally gave me nightmares.

I  hated my neurologist (he never got a handle on my migraines, either) and the fact that he was such an arrogant asshole, "quite certain" I had epilepsy (bullsh*t to that idea... btw, I am known in here for my colorful language at times). My GP felt that everyone is entitled to one "unexplained" seizure.

In my case I just think my body was *exhausted* from the physical and emotional turmoil of BC and that, combined with possible dehydration (I'd done a Relay for Life for my son's girlfriend's team the day before in hot weather) caused it to just pull the plug/game over. I lost my driver's license for three months and hated every GD day of that time-frame. I was put on some crappy med that I eventually refused to take (CYA for the neurologist) and had to hire someone to drive my horses to ME, as we'd rented a cottage for a month and planned to take our boat & horses and sail and carriage drive while there. (We did, no thanks to my a-hole neuro) I digress...

There are usually physical manifestations that occur if a true seizure (grand Mal type) occurs. Petit Mal, (I think they call them "absence seizures" these days) can be harder to note, as the person may just "zone out" for awhile (no body convulsions, etc.) Muscle enzyme labwork will show the presence of certain by-products of seizure activity, along with MRI studies, CT scans and EEGs. The ER throws everything they have at you, or at least it seemed that way to me upon regaining consciousness @ one hour later. Didn't even get to enjoy the ambulance ride--- I was out cold. Hubby thought I'd "bought the farm",... which is bad, since we already own one.

Bottom line? See a neurologist; he'll probably order a sleep study and a 24 hour EEG. You can talk to Aliens while wearing the apparatus. That's what I did--- as some of the gals may remember on this thread. 

Geesh...15 months later and it still touchs a nerve. Probably because I just had my case "closed" with my state's DMV and no longer have to present a letter stating I'm fit to drive (cars, not just carriages). Thank goodness my GP agreed with me and took over the case, so I could effectively tell my neuro to pack sand.

MBJ

Suze:  We are moving to Louisville, Kentucky.  Far, far, far from the hectic pace of Los Angeles.

kathyrnn

Hi Ladies

I've been busy with the after effects from Irene, so I have just been reading your news and not posting.



Very sorry about your friend, Ruth.

Mccrimmon, steroid can be plain brutal on your emotions.



Rachelvk, sorry you've had to join this merry band, but welcome. My only advice is that during these difficult times, Ativan can be your friend!!!!!



I stopped by to *smooch* to whoever it was who posted the tip about taking the Claritin/Zantec combo when taking the Neulasta. Had my first A/C, then Neulasta 2 weeks ago.

Took the Claritin/Zantac ...........ZERO bone pain!!!



Have a quick question ladies. When you say you've had say 33 rads, does that mean 33 treatments? I'm curious because I was told I'm having 3 MONTHS of radiation.



Be well ladies

sandejosgirl

Hi I can't remember if I post here before, but I have been lurking. I was dx 4/11 @ 33, stage IIa TNBC.  I just did my last Taxol (4x AC & 8x weekly Taxol).

I wanted to post for the woman wondering about an Onc switch. I switched after my 1st Chemo. I really liked my Onc but it was just too far away for me to drive (1.5-2hrs to the nearest major cancer center) 'cause I was nauseous. I just met with an Onc, for which I received some good reports, for a "second opinion", liked him, asked him if he was comfortable administering the plan already in place. Went to my next Chemo, talked with the Dr and then viola. Scheduled the following Chemo with the new Onc.  Went very smoothly.

~Stephanie