Calling all TNs

Anonymous

Suze- I, too, am prone to headaches and actually had the scans to check for mets. It's scary, scary stuff. What worked for me was taking 2 Xanax at night so I would not wake up with one in the morning (supposedly one of the "Oh Sh*T" symptoms---morning headaches).

I think you may be on to something with the Benydryl. I'm sure you know that there is such a thing as aspirin rebound and, since Benydryl was not designed to be used daily, there could be a related SE.

Have you tried going cold turky for a few days and then popping an Excedrin (or whatever works for you) when the headache comes on? I think if you can break the cycle you are in you may get some relief.

Keep us posted.

Huskerkkc

Just found out I was TN on Thursday. See 2 onc this week to see who I like and get two opinions. Lumpectomy 2 wks ago, 1.9 cm, margins clear and 3 nodes removed- all clear. Yay! But the TN info seems to put a damper on my Ia diagnosis. Seems chemo is likely when at first I was told rads only. But I guess onc visit will tell all. Am just telling people that chemo seems likely; explaining the TN is too much too explain and frankly I don't really get it either. The E/R- means no hormone pills. But why am I supposed to focus on the HER2- as being a "good" thing? That's what surgeon's PA told me but I was in a fog. Anyone able to clarify? Thanks!

Suze35

Heidi - thanks for the feedback. It sucks that everything becomes so damn scary, even things I have

normally dealt with.



I'm not waking up with a full-blown headache, but there is a little tightness in the am, just enough for me to know it isn't gone.



I tend to get my nastiest headaches when my stress is over, so one at the end of chemo isn't a surprise. But those are usually migraines that last 3 days or so, and this just isn't a migraine.



Thank you Heidi. I will definitely drop the Benadryl, and take a small dose painkiller with my Ativan to see if that breaks the cycle.

Anonymous

Hi Huskerkkc- welcome to the roller-coaster. Her2+ is also a very aggressive cancer and although there is Herceptin to fight it it is still better to be negative. The problem with TNBC is that, after chemo and rads, there is no further tx available to us. The good part is that we don't have to experience the SEs of Tamoxifen or Herceptin and our recurrence rate goes down after 3-5 years whereas ER+ recurrence rates continue for much longer.

Anonymous

Suze- Google "let-down" headaches. They are common after a stressful event ends and were well documented after bomber runs in WWII. I get them alot: react well in an emergency and when all the fuss is over "BAM" instant headache.

Suze35

Heidi - that's me also. I manage to get through the most stressful things, then BAM, nasty headache. Really hoping that's all this is.



Huskerkkc - welcome. I'm sorry you have to join, but this a great group of women who are very knowledgeable. Like Heidi says, HER+ is very aggressive, and even with Herceptin, it is still better to not have it. TN has it's own bad rap, but in the end, all cancer sucks. You come to terms with your pathology over time and even learn to find the "good". For example, many doctors consider TNs cured after 8 years. This is something ER+ women can never say, as they can recur 20+ years out. So, I try and find the silver lining.

Sugar77

Suze - I'm wondering if you are clenching your teeth due to stress or grinding in the night.  That can cause headaches.  I had headaches like that in the past for an extended period and it was my temporomandibular joint that got inflammed and was causing it.  My dentist called it TMJ and I got a night guard and it's helped immensely.  It started when my dad was sick with terminal bladder cancer and I was under so much stress during that time. Hang in there...

Welcome Huskerkkc - you'll get a lot of support from the ladies on this thread. 

TiffanyF4

Hey girls...haven't posted in a VERY long time. Just wanted to stop by and say hello and wish every well!

Huskerkkc

Suze, thanks for reply. I would second the TMJ possibility. My husband is a dentist and I have a mouth guard because of grinding at night; so does my 25 yr old daughter. She was complaining about recent headaches and talked to her dad. Guess when it started gstting worse? Right after my dx. She didn't even make the connection.

Lovelyface

Heidi, good advice to Suze35.  I agree.

Lovelyface

Heidi - As you say that recurrence rate for TN's go down after 2 - 5 years, however, do you know whether age plays any part in it?  I am 53 now, and am wondering if there is more danger until a certain age?  I feel that there is a play somewhere with hormones in our bodies and especially when hormones are diving downwards at menopause, so it makes sense that many women get BC in their 50's.  As for younger women, I am not sure.  I heard today that Christina Applegate, the actress gave birth to a baby.  She had BC in 2008, I think.  If someone's hormones is out of whack, then how can she give birth to a perfectly healthy child.  One would assume that one's hormones would have to work perfectly in order to bear a child, right?  BC is the most complicated disease ever.

texasrose361

Re: christina applegate- from what i understood is she had caught it very early and had only needed a lumpectomy treatment wise... I am not sure of her receptor status so i am not sure if she was put onto estrogen blockers or anything.

It is not unheard of to have a child after BC, it really isnt the BC that prevents us from having children but the treatments we use that prevent us from doing so (like chemo)

MBJ

Christina Applegate had a double mastectomy and it was hereditary.  I read a very informative interview with her right after her reconstruction.  That's great that she was able to have a child afterwards--she was pretty young at her diagnosis.  That's good news for those who wish to have children!

josephine_

Hi Huskerkkc

I too was diagonosed with ? TN BC in June 2009.  ?TN because the core biopsy was 4/8 ER+, but PGR- and Her 2-, but the tumour they removed (2cm) was negative for ER.   I was however treated with Tamoxifen and hated it. but just in case ........anyway my TN BC came back (I would say 12 -18 months after diagnosis) and now in Dec 2010 I have mets to lung, nodes, bone and two in brain.

The recurrence thing with TN is because it is a much more aggressive cancer than ER+ BC and therefore it is more likely to reoccur before 3 years, so if you get that far, the chances of reoccurance are smaller after that than the classical ER+ve tumours which grow more slowly and can reappear years out.  There was an excellent review in the New England Journal of Medicine in Nov 2010 by Foulkes which summarises the current field well.

I initially had a lumpectomy (eleven nodes cear, and again clear nodes are more common on TN BC, they do not hand around!!) I had dd AC/T for 8 weeks and  36 rads).  However, the tumour must have sneaked out through the chest wall.  I did not hang around as my tumour had been removed within 10 days of me first detecting it.

TNBC sucks, but it is in a very fast moving area of research.  There are currently no antibody -directed therapies, but evidence indicates especially for lung mets that combinations with Avastin (the VEGF angiogensis blocking drug) can work well.  Secondly, the PARP inhibitor trials remain to be interesting for TN BC.  These trials go up and done a bit, and the question remains whether these PARP inhibitors will get approved by the FDA next year.  Wait and see.

What I would say is that with TN BC you have to be vigilent.  I had a dry cough for months, and despite clear X rays, normal tumour markers, no evidence of clinical disease, a CA was growing in my lung, and it was not until I coughed up bloody mucus that a CT scan was requested.  There is a balance between being 'screened' and being vigilent.  

On a positive note I sailed through the first chemo combo 18 months ago and worked throughout.  peoples reaction to SE differ.  The tamoxifen I hated and had to suffer hot flushes all night long, but in this situation you will do anything to improve.

Meanwhile I have started avastin and Taxol, and have had the two brain mets zapped by gamma knife (the most brilliant invention).  Zometa for the bone mets seems to have worked a trick.  Aim to get disease in remission a.s.a.p

Josephine

Teka

josephine,

Thank you for the information.   Good Luck!

SunnyCoconut

MBJ - I hope you are feeling better.  I hate feeling sick.  

Hiedi - Scary about morning headaches.  I've been getting them a lot lately.  I have my regular onc visit in about a week...

Josephine - I wish you the best with getting everything under control.  Is the gamma knife the same as cyber knife?  I just recently heard about that. 

Anonymous

"the doctors were just saying that there was a 16% chance for a reoccurrence"

OK, I'm not a statistician (I am mathematically challenged) but somewhere I remember reading that there are two ways to interpret this-- something like "actual" vs. "relative" risk.

This is a quote given an acquaintance by her doctor and another friend passed the info on to me. I do not know the patient's stage, ER/PR status or anything else pertaining to her situation. (other than the fact that she is a hard-headed horsewoman typical of the breed-- I should know, right?)

Chemo was recommended but she has declined based on above quote.

Can someone enlighten me so I can pass this on to my friend? I just know that for *ME*, being TN, chemo was a no brainer. I didn't get hung up in the stats.

Suze35

Thanks everyone for your suggestions. Can't get rid of this headache or the pressure, and it is scaring the crap out of me. It isn't bad enough for the ER, so I will be calling my onc first thing tomorrow. I hate thinking the worst, but I've never had something like this that just won't go away.



I'll keep you all posted.

CaroleS

Hello, I'm Carole, age 55, diagnosed triple negative a couple weeks ago.  I am starting 4 cycles of neoadjuvant chemo (TAC) on Friday, in hopes of shrinking the tumor before surgery.

Like all of you, I wouldn't wish this on anyone, but so glad to find a community of people traveling the same road I am.  Good luck everyone. 

Luah

Heidi, that sounds like actual risk not relative risk - as there is no mention of a 16% greater chance of recurrence.

Normally these rates are given over a fixed period like 5 years or 10 years, or possibly lifetime.  The average woman on the street has an average lifetime risk of BC of  12.5%  (1 in 8), and risk is higher the older you are.  At age 52, my risk was something under 5% (yet I got it).  So someone with a 16% lifetime risk of recurrence is not that much more at risk than an average woman getting BC in the first place.   

josephine_

Hi Sunny

It may be semantics, but I believe the gamma knife techique refers to the cradle and the rads and is used for treat mets to the brain, and I believe that cyber knife is the apparatus used at other sites, e.g the neck, but there are difficulties immobilising the neck; the skull is easy because the screws/pins can attach the cradle firmly.  I am sure others may have more information, but the technique is fantastic because it can more precisely direct several beams of radiotherapy to one site, with none of them on their own having 'normal' tissue damaging effects.  Josephine

jenn3

Suze - I am a former (severe) migraine sufferer and suffer with regular headaches. And...........I have a daughter that has a rare neurological disease that causes terrible headaches, we've done it all.  If you are trying to stay away from asprin because of an upcoming surgery, try drinking a caffeine drink like coffee, coke or diet coke, take a hot bath/soak with epsom salts and then lay down with a cool rag over your head in a dark quiet room.  If you can have asprin, 2 Execedrin with a diet coke usually kicks it.  With all of that said, if it gets out of hand, which it may be - the ER may be the way to go.  Good luck and I hope that you feel better soon.

MBJ - Sorry to hear you have the flu - Ugh!!!!  Rest, rest, rest your body needs it. 

Welcome to the newcomers- sorry you had to find your way here, but the support is wonderful here.

Suze35

Jenn - thanks so much for the suggestions. I finally said screw it and took 2 ibuprofen with a diet coke, and it starting to ease a bit I think. I can reschedule the upper endo anytime, busting this headache is much more important for my peace of mind! I hadn't thought of the cool cloth - I have an ice bag I use for my migraines and will give that a go. I feel like I have a migraine headache without the actual migraine! And Jenn, I'm thinking of you daily .

Swanny

Josephine - wish you the best.

Carole S. - like everyone so sorry you have to be here.  My name is Carol S., maybe we are sisters?

Heidi - how is it going? You sound good.

LJ - Hope you are having a great time. 

moe0279

Hi, ladies its been awhile since ive posted, but i have a question?  Any suggestions for this Chemo acne...Has anyone tried "proactive"  I need to find something...the onco told me to use hydracortisone (sp), but its not really working...

 Hope everyone has a wonderful Monday!!!  thanks ladies 

lrr4993

Moe - I did not have chemo acne, but have been using proactive for a few years.  I love it.  I have never had bad skin, but would occasionally get a large pimple . . . the under the skin ones.  I have not had a single one since using it.

mitymuffin

 http://jnci.oxfordjournals.org/content/102/24/1845.long

Mega analysis results :"Dose-dense chemotherapy results in better overall and disease-free survival, particularly in women with hormone receptor–negative breast cancer. However, additional data from randomized controlled trials are needed before dose-dense chemotherapy can be considered as the standard of care. "

mitymuffin

 http://jnci.oxfordjournals.org/content/102/24/1845.long

Mega analysis results :"Dose-dense chemotherapy results in better overall and disease-free survival, particularly in women with hormone receptor–negative breast cancer. However, additional data from randomized controlled trials are needed before dose-dense chemotherapy can be considered as the standard of care. "

mitymuffin

http://www.cancernetwork.com/breast-cancer/content/article/10165/1795372

This is a discussion of the use of Anthracyclines, and the last paragraph references triple negatives. 

Titan

Thanks Mity for the info..some good stuff there!