Calling all TNs

Braveheart

Hi ladies,

I'm 34 and was diagnosed this January with TNBC. Had radical mastectomy. Just finished chemo, 4DD AC + 4 DD Taxol. My 1st appointment with my onc will be 6 weeks after chemo. He'll do manual exam and will order blood test.

I'm glad to be part of this group of strong, wonderful women. 

Braveheart

Congrats Tiffany! So happy for you!!!

Stupidboob

Thanks for all the support gang............:)

I want to make something straight as I must have worded it wrong.   I am assuming that BS is for breast surgeon?  If so, I could not be happier with mine.  He is WONDERFUL!!!

Did any of you have issues with low blood pressure?  I have had it for 2 days now and it is horrible.  My BP last night was 99/53 WAY TO LOW FOR ME and I felt horrible.  I usually run on the high side.   I reported it but unless I am running a fever they don't seem to concerned with stuff.  I have suffered with throat pain since day 3 and still have it.   I have had so many weird body things going on that I just want to say the hell with it all.   I feel so weak I can't stand up for long.  I am an a/c and heating unit all in one.   I am a weeping willow.   The ON said that he thinks it is just the chemo reaking havoc on my hormones.   I can not take this, and then with my anxiety I am afraid to take my xanax because it too makes you BP go down, and if mine gets much lower I won't be here.    Any advice?

Titan

Hi Braveheart...love your pic of the rose and your "quote"...and glad you are done with chemo..time to move on now and pick yourself up again..body and soul..it takes a while..BC damages your soul along with your body...it's hard to come back from this...it's not easy...baby steps..ok??

Ok..now that one of my post was deleted I really feel part of this board..ha ha..first time for everything I guess..The mods did pm me and explain the situation to me..I completely understand..I broke the rules....(I swore in post)...I know that I can't come on here and swear...at least too much..

Glad we had some good news this week...let's keep it going...and everyone have a great weekend..we are going to a wedding..first of many this summer including my daughter's in October...honestly..I'm feeling a little overwhelmed..no wonder I started swearing..ha ha.

Anonymous

Titan... what the f*ck? You swore in a post? How the H*ll am I still in here then?

Anonymous

PS- I have "graduated" to yearly mammos now. So, feel like I'm looking over that cliff again, wondering how far I can fall w/out closer monitoring. Still on 6 mo onc visits though...

blondelawyer

I just found out today that my tumor is not responding to the the taxol.  I am TN and am doing neo-adjuvant chemo to attempt to shrink the cancer down before surgery.  Today's MRI revealed that my tumor has grown in the 3 weeks since I have been on taxol (I was on taxol first because of a research study).  So, study is out the window and I start AC on Monday.  I'm honestly freaking out a bit to find out that my tumor did not respond to taxol.  I know that AC are big guns and that there are other options for chemo, but with my triple negative status, I am just worried that my options are going to be limited.  

Suze35

blonde lawyer - it is scary to hear, I know, but the good news is they caught it! I became resistant to Taxol/Carbo, but I absolutely responded to the AC (I had it first). There are other options as well! I'm going to do Xeloda and Ixempra, both of which act in ways that are novel to my cancer. They will monitor you closely, and change things up again if need be. It sucks, no doubt about it, but the neoadjuvant therapy has given you valuable information - you can use that information to improve your outcome. If you had surgery first, you'd never know the cancer was resistant. Hang in there!



Heidi - sorry to hear they ran out of funding for the testing. That stinks. I hear you on the lack of quick mobility, hopefully it will ease over time.



Welcome to all of the new women, I'm so sorry you have to be here.



Stupidboob - AC kept my BP low also. You are going to get sick of hearing this, but fluids, fluids, fluids! Dehydration plays a role in the low BP. Even if you have to get an IV bag of fluids, it would help you feel better.

ksmatthews

blondelawyer- sorry for your news. I do TAC once every 3 weeks, so far seems to be working as you can no longer feel the tumor, I have 2 treatments left and then will do mri.

good luck

Titan

Ha ha Heidi..I think I forgot to use the ***#..stuff..I basically told this *bb8*tc**h..to stick her comments up her **SAS..***...I think you may remember her..rumor is that she is the "not buying into it"...person.

Blondelawyer..here is hoping the AC will work for you..I really, really hope it does..it is strong stuff..I did AC first...really didn't have too many issues with it...it's alot quicker to infuse than Taxol...like 1/2 the time...never really had any side effects.just felt "different'...

Titan

Like your dew rag KsMathews!

Stupidboob

Suze35 how did you go about getting your fluids IV did you just ask for it or did they do it?  Also, should I request it before or after.     I am going to try sucking on the ice during treatment as to not get as bad of mouth sores (read it works, we shall see) my throat feels like it has no skin on it or my esphogus

Titan

Heidi...I've been only yearly mammos for..ok..1 year now!  one six months after surgery, then another one in six months, then one year later (this year..had it in May)..not due to go back until next May...I'm not as dense as I used to be..Hooray!  The mammo report said that there is basically NOTHING there..boring as heck..I love it...Still on the every 3 months with the Onc and every 6 with the BS...so really nothing has changed.

My mom had Hodgkins disease 10 years ago..her onc just released her this week...said she was cured...so anyway..I think that we are all going to followed for a very long time...

Not a bad thing..

Stupidboob

Since I am new to this, do you all really trust your mammograms?   My cancer did not show up on my mammogram.  Now, I don't trust them.  I know they pick up alot of cancers but I did not know that they don't pick them all up.   Why in the world they would tell women to stop self exams is beyond me when the mammos don't pick them all up.  

Suze35

Stupidboob - my mammo completely missed mine as well, which is why I went for the BMX. I just would be too nervous every check up.



Re: fluid, when I was getting my chemo, I would just have the nurses schedule an appointment for me to get fluids. I could also call and get something the next day if necessary. I would give your doctors office a call and ask if you can go in for fluids, tell them you are struggling to get liquids in and need the boost...they are usually really good with that sort of thing!



Also, be sure to mention the mouth sores - there is a prescription mouthwash they can give you to help. There is no reason for you to suffer!



Titan - yea, that poster is the same $&@&% with a different username. Ticks me right off!

MBJ

Blondelawyer:  I agree with Suze, now you know to switch to another chemo.  We are all different and there is a chemo coctail for everyone.  Hoping the AC kicks b#$t.

Titan:  OMG-she/he posted randomly, confrontationally on another thread and we were all WTF???  It was so out of context to the conversation that we were all left scratching our heads.  It takes all kinds, huh?

Heidi:  Glad all is clear and that you haven't been deleted for your potty mouth   I have found that I now need to dress much warmer, slightly uncomfortably warm to get my body temp up to normal--the good news, is my body aches go away at 98.6 and only at 98.6--the problem is trying to keep it there.  Try taking your temp when your body hurts the most--I am usually below 98.3 when I am in pain and when it's cold out I get as low as 95.6 and then I can't even walk.  My favorite pain free time is in a hot bath or shower or driving in my hot car or with the heater blasting=no pain!

swiftbird

Titan - good for you; glad you're keeping on things, even if you get booted off  

I'm with many here. I do my 3 month onc appt at May on Monday; blood work up etc; did my 6 month mammo a few months ago.  In leading up to monday, every little ache or twinge and my mind goes to the worst case scenario. Hate it but getting accustomed to it.  BTW, from when do we measure 'anniversary' date? (esp for us neoadjunctive treatment gals) I read it somewhere during my chemohaze, but can't recall LOL

swiftbird

oops, redo...

Titan - good for you; glad you're keeping on things, even if you get cyber-deleted  

I'm with many here. I do a 3 month onc appt on Monday; blood work up etc; did my 6 month mammo a few months ago.  In leading up to monday, every little ache or twinge and my mind goes to the worst case scenario. Hate it but getting accustomed to it.  BTW, from when do we measure 'anniversary' date? (esp for us neoadjunctive treatment gals) I read it somewhere during my chemohaze, but can't recall LOL 

Lynn18

blondelawyer:  I am sorry to hear your tumor didn't respond to Taxol, but like others have said, it is good to find out earlier.  Hoping AC will work well for you.

Stupidboob:  I know what you mean about not trusting mammograms.  Mine did not show up on a mammogram.  But now I go to a different place that my BS highly recommends.  Also I will get MRI's.  

sukie10

Bolonde lawyer. I read the study about Taxol first and wondered why it wasn't offered to me. If its any help, AC knocked my 7cm tumor right out after only 3 treatments. I could actually feel it working, there was some mild pain. I'm sure this will fix you right up. It's good they are monitoring you so well. Neo adjuvant chemo can be a really good thing. Good Luck. 

Titan

No..I really don't trust mammograms.....but I do get a great breast exam every 3 months..I think my tumor wasn't found because of my very dense breasts..but that is another topic..

.

Anonymous

MBJ- interesting thoughts on the joint pain; I'll keep it in mind.

Pompeed/Mindovermatter/Patzee--- what an *sshole. But then again, what can you expect from an individual with multiple personalities? I thought from the getgo that she was..... weird. I stopped following her post months ago though, so I didn't realize she'd.... morphed.

SunnyCoconut

swiftbird - my onc uses the date that all surgery/treatment was finished.  I had surgery Jan 2010 and chemo ended May 2010, so my date is May 20, 2010.

minxie

Anyone else out there having very little follow up care? This is primarily by my choice. I see the once every 6 months now, whew. I hated going every 3! I've declined tumor markers and he says he's fine with that since they're not terribly accurate. So all they do is CBC bloodwork on me, we talk about how I'm doing, and that's it. I know if I had any symptom he'd immediately suggest a scan but since I don't, I'm more than happy to avoid the anxiety of a PET or MRI - those machines make me cry just looking at them!

I had a double mastectomy with reconstruction, so no mammos for me either. I've heard of people having ultrasounds to check on reconstructed breasts, but again, I don't want to submit myself to the anxiety and I have no need.

Maybe I'm burying my head in the sand. But I don't see the point in getting a bazillion tests unless something feels MAJORLY wrong - and in that case, I don't even know how much it would be worth it, with no treatments for Stage IV TN beasides chemo, which I do not think I could do again.

This month I am officially 2 and a half years out from diagnosis/surgery. Sometimes it seems like it all happened to another person...  and in a way I guess it did.

MBJ

OMG, Heidi, she had 3 different names she was posting under????   Maybe she just went off the deep end.  I don't recal her posts here to be crazy but then I don't recal her posts at all and I wasn't following this particular thread either.  WTC crazies!!!

Lynn18

I should just stay on this thread only.  I posted something on the same thread as Titan, and also got my post deleted.  I did not use any cuss words.  I just pointed out some disturbing things that were on that person's blog.

This thread is the best.  Hope everyone has a great weekend.  

ksmatthews

Thank you Titan!  I have a wig, hate it!  Only wear it to work, it the dew rag for me!!!  I have all colors!

Kymn

Hi ladies, wow some interesting stuff going on, cant beleive titan got deleted lol you are so positve and encourageing this lady must have really got your panties in a knot lol I have read some of those threads where everyone fights just kind of makes me giggle the ingnorance of some.

Anyhow I am day one out of treatment 5, so far just headache and some cramping but I know from past it will get worse before better but hey now I can officailly say I more to go

sorry to tired to reply to all just giving hugs

Kymn

SunnyCoconut

Kymn - Yay!! only one more, that is so great!!!

MBJ

Kymn:  One more to go will be done before you know it!  Big hugs to you!!!