Calling all TNs

Kcal - welcome to our group. It was great to hear that you had such an effective response to chemo. I don't know the reason for the numbness on the non-surgical side, but one of the other sisters on here did mention that she had facial numbness as a SE of Taxol.



FernMf - *sniffles and wipes tear*. Another newbie graduates to giving advice!! (feel like a proud Mom, everytime I see this happen)



5owens - sorry you're here but welcome and yes this is survivable.

First, hubby is right, stay away from the Internet unless you're sure they're reliable sites. Here's two for you.

www.tnbcfoundation.org

www.cbcf.org

My first tip for you is that when you go to your first planning appt. , bring a notebook buddy with you. This should be someone who both listens well and takes notes well. You will have an unbelievable amount of information given to you, which is hard to remember. The notes will help you remember.

Please ask any specific questions you have and we will do our best to help. Also, we often use abbreviations on here (for example MO =medical oncologist, BS = breast surgeon, RO = radiation oncologist) . so don't be afraid to ask what it means if you don't know.



Painting - great to see you!



Melissa - glad to hear the A/C part has gone well.

Tooky.....beautiful

Hi Everyone!

I am just checking in after a long while.  Saw some nice bald pictures - very cute!  I have a few myself and will try to put them here some day.  Sorry, ladies, this site was my only solace but now I can't even come here as much as I would like to due to my eyes.  Finally found out that I have a condition called "pre-retinal membrane".  Seeing a retina specialist this Friday, see what he says, how serious this is.  I also got new close vision glasses, will pick it up in a week, can't wait.  Anyway, my eyes gets really watery, painful, blinded - just feel like closing it and going to sleep.

What causes pre-retinal membrane - well, when a person's body has to respond to an immune dysfunction, the retina develops a thin membrane in the front of it, so as to save the vision from this attack, as the retina is the most important organ which makes us see.  This is the natural response (imagine how our bodies are so amazing)!  In my case, I am not sure what happened, maybe at the time, when the BC came and attacked my body, there was an immune response, and at that time, the retina developed this thin membrane.  It can also be referred to as scar tissue.  The scar tissue can fall off, and then I won't have any problems, but that is a big "if".  Or it can get stuck to the retina, causing more problems. Surgery would be the last option, as it is a very intricate surgery.  Mine seems to be in both eyes already.

I can see fine right now but cannot read, however, that is more of a glasses problem.  This new problem makes my eyes painful and hard to keep it open.  It has become very sensitive to light.  The internet does not say that I can get blind, rather, I can have distorted vision, depending on the severity.  The doc told me that as long as anyone can see, then glasses help magnify their vision.  The problem is when someone cannot see with glasses, and in my case, that is definitely not the case.  I have all my vision.

So now I am facing another huge medical nightmare.  I am thinking what if I get blind...... have to ask the specialist that quesion.  When I first heard this, I felt the same scare as I had felt with BC.

Sorry ladies, I am trying to avoid stressing my eyes too much, so can't read all the posts. Will try to post here every now and then, just to keep in touch.  Love you all.

Hi Inmate... thanks I am doing very well considering.   Continue to take the pain meds - they are certainly helping.   Still pretty numb.  Nurse changed my dressing on Saturday as was very happy with how things looked.  Drains are really a pain in the arse... and there was me freaking out about them ?   See my BS for follow up on August 28 - hes on holiday until then.   Will get the path report from the family doc before hand... fingers crossed for clean margins.    Now just resting up and healing.

Although I haven't responded to you all, I am thinking of you and sending good thoughts to those with trials and tribulations.   Stay strong ladies.  Love & hugs xxxxxxxxx

Cocker - glad you were able to move your daughter's appointment up - still the waiting - ((HUGS))

Just wanted to say a quick hello to all...I was away from the hot city this weekend spending time with my family.  They've all been incredibly supportive.  Radiation is very tiring but it ends Weds Aug 8. Saw the RO today, she is pleased with the way things are going. Hope to read and post more when I'm less fatigued.

Tazzy - glad  your surgery went well. 

Cocker - I understand your fears. But as others have said, over 80 percent of breast lumps are benign, especially for younger women. I hope you can hang on to that and be calmed a bit. 

Welcome 5owens and kcgirl and desertmama.......good job on finding this group of ladies.  you will find all the support you need here.  

Cocker......Ugh!  I am sending all my love to you and Mandy. 

Well ladies......I was away for a week or so, pretty much had the worst case of drag-ass you could imagine.  That does not bode well for an ADHD person like me.  In addition to the exreme fatigue, my entire body hurts, constant nausea, headaches and dizziness.  Lets not forget the freakin mets having a dance party all over my chest.  Seriously!  Asked the doc today if I will ever get rid of the mets and he said they are tough but it is possible.  I'll accept that answer.  Good news, I qualify for the mets trial, but it may come down to choosing the trial over chemo.  I will let the good doc make that call for me.  He will have a conversation with the trial principal before giving his recommendation.  He wants to see some positive results before sending me over to the trial.  Oh and did I mention the pain is back on my right side?  Dr K couldn't hear anything so we are still going with a clean scan (except for the mets, of course).  That means it is still considered a local recurrence.  Yeah!

For those of you worried about a recurrence.  Try not to worry too much..  As Cocker's Dr said 50/50 chance.  I am way past the 50/50 chance and still have lots of fight and in no way consider myself on the wrong end of a losing battle.  TN does respond well to treatment.  Sometimes it takes awhile to find the right treatment.  I will keep fighting until they find the cure.  Having good mental strength is as important as the tx.  I think I can, I think I can I think I can!

And just so you all don't think I've lost my marbles.......cancer fucking sucks!  Losing two more sisters just brings it all home.  Tears and sorrow tonight.

Love to you all!

Tazzy - So glad you are doing well!



Inmate - So sorry for the drain and trauma. Totally sucks after all you've already been through...... You are a fighter all the way.



Lovely - So hope your eyesight is better soon. Is it from the BC treatment?



Karen - 67 is really young......she is lucky to have a loving friend like you to help. My mom is 82 and I couldn't imagine her going through all this cr@p.



Hope60 - Great news from the RO! Stay strong



Cocker - I'm not sure what the 50/50 thing is, but I know that this reality check is teaching me how to LIVE differently. More family time and less work....Hope the cafe is doing well!



Kathrnn - Good move on the abbreviations. It took me several weeks to figure out the lingo, and didn't know what RO or MO was until you posted it! Don't forget DH ( dear Hubby, right!?).



I'm having a wonderful time with my sister! I didn't realize how much I needed her until she arrived. We've spent hours and hours reliving the past and talking about the future. Laughing, crying, and then laughing some more. Going to miss her when she leaves on Sunday, then it's just me and the pups again. So appreciative for every moment... I told her about you gals, and she wanted me to say "thank you" for being here. All of you have made a difference in several peoples lives, I know you impacted mine.....



Hugs to all!



Shannon

Thanks, Dawn......you rock!

Back attcha Baby!

BernieEllen - thank you that was just what I needed.

Cocker - Thank you. A warm Hug is just what I needed.... :-)

Hello Ladies;

Just a quick check in.  Week out past my first treatment.  Got my Neulasta shot on Friday. Took the Claritin (yes not the D) but felt like I was hit by a truck on Saturday.  Had to take my bra off because it was hurting my shoulders.  Slept LOTS.  Maybe just giving myself the right to do that.  All else is well.

Sending out warm and genlte hugs to all the women who are keeping me sane.  And for those we have lost is heaven's gain.

Well seeing as how I have now seen the F-word unleashed here, I would like to share a quick story with you ladies. Please keep in mind that I live in an Islamic country in the Middle East where you don't ever hear this word in public, and flipping the bird will get you sent to jail and then deported.

Apparently I created a small spectacle coming out of surgery. It seemed a gargantuan effort to form words and speak them, and I wasn't sure if I dreamed it or not, but my DH reports that the !st thing I said was I love you, before blurting out FUCK CANCER!! Repeatedly. He says the nurses remained deadpan and politely pretended not to hear. 

These, of course, were the very same 2 sentiments running through my head like a mantra on the way into surgery. 

DesertMama - So proud of you!  Let it out, scream it out, let the world know just how you feel!  How are you doing?  Keep in touch.  We care.

Cocker - Still holding your hand and sharing your worry.

Inmate - Holding your hand and sharing your worry, too.  You are going to beat it this time for good.

Dormac and Bernie - Thanks for the laughs.  I think we all needed a reason to chuckle.

I found a huge zucchini this morning.  I've been on internet for healthiest  recipe to use it up.  Most need to turn on the oven, but that seems crazy when it is so hot here.

A cheerful hello to all you sisters, Jan