Calling all TNs

Summer38

I haven't been on the boards too often lately but every once in a while I pop in to check on my "sisters". I am so saddened by the news of JustPayton! Titan, I must admit that as soon as I read it I thought of you. In my mind the 2 of you go hand-in-hand. When I was first diagnosed this thread was my lifeline and I felt like the 2 of you (and Heidi) gave me hope and a lot of laughs! She will be missed!

For those of you who are dealing with recurrences - you're in my thoughts, stay strong!

Suze35

Titan - I am so sorry for the loss of your friend.  She sounds like a wonderful woman, and I regret that I didn't get to post with her.  You are right - we are alive NOW, and it is something I need to remember.  Hugs to you.

dlcw - I'm sorry to hear your pathology report wasn't as good as you were expecting, but that 30% ER+ IS good news.  This opens up options for you in terms of post-surgery treatment!!  Take heart that your cancer did respond to the chemo, and remember that you will be hitting it with "novel" chemo now - something it hasn't seen before!  My cancer responded best to the A/C, so I have a good feeling it will do the trick for you.  The key is to now consider yourself an adjuvant patient.  You had your surgery (as many women do before chemo), and now you are doing your chemo.  That helps me stay grounded.  Hugs to you too!

Kymn - I'm sorry you are having such a rough time.  My chemo nurses saw me lose it a time or two, you do what you have to in order to move forward.  The Taxol is definitely much easier - I've heard that if you have a hard time on A/C, the T is easy - it was true for me.  Hang in there!

Summer - we have never "talked" but I am happy to meet you!

Off to rads - starting to get a little splotchy in areas of sun damage.  Still getting the nausea, but the nurse finally admitted that it is probably from the rads - especially on the left side.  I'm still battling neck pain, and having a mild bout of vertigo.  I can't win!  Well, at least it is all stuff that is non-cancer, so I guess I am winning in that way!!

Have a great day everyone!

MBJ

Kymm:  We are all entitled to our occassional break downs but I am so sorry you are having a rough go of it.  Just breathe and know that you are almost done and you come on here and rant and rave and cry all you want.  Big hugs!

dlcw:  I think knowledge is power--you do have a bit more ammo to fight this so that is where I would focus.  Big hugs to you, too!

Kymn

Thanks MBJ pass the tissue puffs with lotion please

Babs37

Hi everyone. Just wondering, while you were doing rads, could you put aloe on your skin during treatments to help with the burning? I was told not to put anything on my skin but I see that alot of girls put some kind of cream or aloe and it's ok with their RO.......

MBJ

Babs:  You MUST put lotions, aloe, all srts of creams on radiated skin!!!  PM Estepp and she will tell you what worked for her.  Hugs.

alexanjb

I was told to use Miaderm and/or Aquaphor during Rads.  I opted to use both because the Miaderm is more expensive but doesn't stain clothes so I used that with my good clothes.   I found a generic version of Aquaphor in Rite Aid Pharmacy and I used that at night and really smeared it on.  After burning I was given an Rx for a medicated cream.  The RO nurse also suggest a soak.  I can't remember what that was called.  I'll post if I remember.  It was dissolved in water and applied like a compress to the burned area.

Babs37

MBJ- Thanks. I don't understand why we don't get all the same information on this. I was told by my RO and nurses to put cream before I started rads. But once it started, not to put anything on it. I'm at my 10/25 rads today and I am red!!! It does not hurt to much yet but it is starting to be more sensitive. I will pm Estepp for her input on this. Thanks again. 

tracie23

kymn, I am so glad you are almost done , you can do it..... through all the shitty SE .. sending you hugs

Lynn18

I am also so sad to hear about JustPayton.  That makes three TN's that are gone.  First it was Olga, then Pauldingmom, and then Sam.  I feel sad about all the children who have lost their moms.  My heart goes out to the families of these women . . .and I know it must be especially hard for you Titan, since Sam was your special friend.  You are right, we have to laugh, and cry, and go on with our lives.  Easier said than done.

Heidi:  Thanks for posting the pics, and I like your avatar.

Kymn:  Glad you are almost done!

dlcw:  I hope you are healing from surgery.  Sounds like good news that you are somewhat ER+, hopefully you can benefit from taking something afterwards.   

Summer38:  Good to hear from you, 

Anonymous

OK, another diversion for you guys...

Meet Russell... new patient. If I'd had pink vet wrap it would be Sheryl...

Hopefully he'll do better than the loon I had last month, as the nature center I work at would like to have him if he does not regain flight capability.

Birds are tough... very little warning before they go belly up. Keep your fingers crossed; I'd like to see this guy survive.

Titan

Hey Russell..hang in there...!..forgive my ignorance Heidi..but what kind of bird is Russell..educate me...I'm not much of a nature person...and just because I don't know what kind of bird he is doesn't mean I don't like him...in fact I admire YOU so much Heidi..all the work you do to help these little guys survive...

Thanks for your comments ladies about JustPayton (Sam)...and it was good to hear from you Summer..missed you...

We picked my son up from school today..He went to a private school for 2 years but is now transferring to Ohio State...He will be fine there..He had to transfer due to financial reasons..Private schools are EXPENSIVE!   But he is hurting right now because he loved that school...I'm hurting too...I'm just pissed off...college is sooo dang expensive..how can the normal person pay for this?  

Kymn..hang in there.you are almost DONE...we will party with you when you are done..and please don't be embarrassed about crying b-4 your treatments..we have all felt the same way...I used to cry a little the night b-4 a treatment..My DH would say..OK..just quit...if you feel that is what you want...of couse that is what I wanted...

It's really true that we need a good support person throughout all this...My DH just listened while I went off on him...and I found out that he cried after my surgery when the BS said everything went well...I have to admit that I was a little surprised.

About the rads/cream thing...why in the HECK would your rad onc tell you to NOT use creams during rads?  What was their reason???? I have never heard of that...

cmksocal

I think I was told not to use the cream on the morning before rads (or it was within a certain time period before rads).  I used cream in the evening.

Colleen

Pamelajo

Titan-I've missed your sense of humor girl!  The skin mets are a pain in the foob, but Xeloda is knocking them down.  I actually had a onc appt yesterday and he extended my visits from every 6 wks to 9 wks......so I guess I'm doing good.  All my bloodwork is coming back fantastic, so once I get rid of these pesky mets, I'll be good to go.  Not Stage 4 mets.......just 3b  LOL  as if that makes a difference at this point, having had a dr's appt every month or two or three per month for the last 2 years.  I'm ready for a break.  But the xeloda is easy on me, with the exception of hand foot syndrome.  but even thats manageable.

Love to all of you.  Keep the faith and try to be as healthy as you can, and you'll do great

Titan

OMG..I'm so stupid!  Russell (Crowe)..Sheryl (Crow)..  Can't really blame this one on chemo brain..can I? 

Pamela Jo..know what you mean about seeing doctors all the time..keep waiting to hear the onc say..see you in six months instead of three..but no go...

Babs37

Titan- When I went for my rads yesterday, I ask point blank if I could put aloe on my skin and the answer was NO! The tech said that she knows that every hospital has their way of doing but were I am, they only want you to put the cream that the RO will give to you IF he thinks you need it. I see my RO next tuesday and he better have a darn good reason for not letting me put cream on!!! To top it all off I have a cold.... DH and DS had it last week and now it's my turn. I just hope it will be over before my next rad next tuesday because it makes me cough alot.

Have a great week-end everyone. (((HUGS)))

Anonymous

Russ says Hello and wants to confess that he did a pretty good job of removing his wing wrap during the night.

He has switched his room to the penthouse level and is enjoying the room service in this hotel.

This morning he ordered boiled egg, 2 night-crawlers and a house sparrow nestling.

He's still contemplating the nestling. I suspect it is due to his sense of intelligence... does one *eat* house-guests or entertain them?

And yes,... he did have egg on his face...

bak94

Russ has such intelligent eyes!

Titan

He seems to pose for the picture!  He does look well fed..

Babs.I didn't use aloe..I used aquaphor...the only time I wasn't supposed to use it was the morning b-4 my rads...I could use it as soon as I was zapped though.

I put the aloe on my bald head to help the hair grow..I read that somewhere on here...I'm not sure if it helped or not but it did help keep my scalp cool.

Suze35

Isabelle - that is weird! My RO said cream, cream, and more cream, just not less than 2 hours before rads. How is your skin holding up so far?



Heidi - what a smart bird Russ is, lol. Very stately looking too!



Pamelajo - so glad to hear the Xeloda is kicking butt! I might be going on it after rads myself, so good to know it is manageable on top of effective.



Guys, I'll be disappearing for a few days. I'm a little too sensitive at the moment, and taking things a bit hard these days. Another thread kind of set me off a bit, so I'm going to regroup and be back. Not sure I'll venture out of my own safe space though, lol. I'll be back in a few!

RachelKa

Hi ladies,

I don't come to this site very often lately, have been crazy busy and trying to get my butt outa my desk chair. But wanted to share this resource with you. This help line just for Triple Pinksters ... http://www.1uponcancer.com/breast/ 

MBJ

Heidi:  I love Russel Crow (the bird, lol).  I also love that you rescue animals. 

Suze:  Hang in there and I am so sorry another thread put you off so.  I am very careful where I allow myself to hang out on BCO.  I try to stay with ones I feel safe and protected in like here.  Hugs!

Babs:  I would still PM Estepp as she had such great results and skin after radiation.  There are many things I did to help me do better during treatments and I get not doing anything right before, but after??

Titan

Suze..you take care for a few days ok..and come back when you want to..I have to admit that some threads totally piss me off but I just take a deep breath and sign off b-4 I can get into trouble...People aren't going to change their minds about things...and I think sometimes people just get on here to stir the pot...I try to avoid those too even tho its kinda hard sometimes.I feel that I am right and they do too...

Bottom line..we are triple negative..that scary cancer..and we are all just trying to live and move on once we are past our treatments... I know that we all have BC but we have to admit that there are some types that are a little bit scarier than the rest of them...we are are dealing with that.

Ok..and Suze...I don't even know what your issues are so I may not be going down the right avenue here...

But dang..if anyone hurt your feelings..well..maybe we should send Russell after them..ha ha.

Titan

Heidi..how is our Russell doing?  I told you that I'm not a nature person but we do have a snake (OMG>>I'm freaking)..living under the front porch steps..I want my DH to move it somewhere but he won't..the kids don't seem to mind...I just remember my mom's total hatred of snakes..I grew up on a farm and whenever she saw one she got the hatchet out..and good bye snake..she hated them..and b-4 you guys think my mom is this huge, hatchet wielding lady..she is not..she is a tiny woman..but strong...I want to be like her when I grow up.

Anonymous

Titan--- way too many snakes meet the wrong end of a hatchet by people who don't understand them. Unless your snake is poisonous and poses a threat to you you should probably thank him for keeping down your rodent population.

Crawl on under your porch and get a good look at him. Better yet, take his picture so I can give you a positive ID. Just kidding....

Russ says hi.

TiffanyF4

Alecanjb. I was diagnosed with poly cystic ovarian disease many years ago. However, I have never heard of there being a connection. I did however have my daughter after my diagonosis. I have 2 children and I did not have to have fertility treatments. I do know many women with pcod that did have fertility issues but were able to Concieve with help from a fertilty specialist. I also was put on a diabetes medication but discontinued it after I was pregnant.

kelben

Hey Russ hang in there ....  you look mahhhhvelous

dlcw

Hi everyone...thanks for the good wishes re: my pathology results...I am just having a hard time getting ok with it (not that it really matters whether I am ok with it or not...).  I've spent the last 6 months focused on only TN, and thinking that at least if you get through the first few years then the chances of recurrence go way down.  Now I feel like I get the worst of both - greater chance of recurrence in the first few years from the TN, then chance of recurrence FOREVER from the ER+.  I know that's a glass half-empty outlook but I can't seem to shake it.  Get another 2 weeks off before I restart chemo so am going to try and enjoy feeling good and getting back, at least for a short while, to a more normal routine.  School gets out in a few weeks and this is a crazy busy time with parties, recitals, etc. so that will give me lots to do to keep my mind off cancer for a bit.

Suze35 - sorry that something upsetting happened on here - I too have learned that there are places I just shouldn't go as I end up feeling really upset afterwards....hope you are back here soon and feeling better.

Heidi - I love the bird picture and your post about the snake.  My entire family (in the South) thinks the only good snake is a dead snake - my aunt once had my uncle kill a large king snake while it was in the process of eating another snake!  I was advocating for leaving it alone and letting it help her control the snake population but she wouldn't hear it...makes me sad.  We have a couple of small rubber boas that live in our stacked stone wall (turns out it's great snake and black widow habitat..).  They always give me a start when I first see them but I am glad to have them around.  

dlcw

Anonymous

Testing out a new Boston Terrier canine containment system on one of my carriages. What do you think?

Surprisingly, they were quite content in there and it reduces the worry of lose/lost dogs and pinched paws. It's not attached to the carriage (that would be unsafe) but is *is* secure on the backstep.

As O'Reilly would say... am I a Pinhead or Patriot? Oh wait... they're Boston Terriers... I must be a Patriot!

Trophy Dogs?

MBJ

Heidi:  Trophy dogs, lol.  They are soooo cute!!!!