Calling all TNs

Anonymous

Sugar- yes, I'm thinking the same thing at this point... whew!

lrr4993

Lovely - I am doing my last rad tomorrow.  It has been very easy.  The treatments themselves are nothing.  I did start to burn during the last week. Be sure to use lots and lots of aloe, cream, or whatever else you are using. I unfortunately developed some blistering and nasty skin break down on my very last whole breast radiation -- thanks to my skin for not hanging in there for that one last time - lol.  But even that has not been bad.  It does not hurt.  It is just gross and I have to keep burn medicine on it now.  The rad onco said it should be healed within a week.  

I am sure you will do fine.  The worst part of it is the daily grind of it.  But like chemo it will be over before you know it. 

Titan

Heidi..you are a freaking stick!  I'm sure you are not gaining any weight..but even if  you are you will  lose it by riding your horse or falling off of them...Make that DH of yours wait on you hand and foot...

For those of you going through rads..I think most people handle it very well..there are some that have some se's but for the most part..it isn't bad at all...I thought it was so much better than chemo...quicker, no needles...just get zapped and leave..I liked that..

EricaH

Hello triple neggies - Anyone else in the middle of chemo trying to work out?  It is soooo exhausting - particularly scampering from locker room  to restroom and back trying to get your headgear changed out.  I don't know why I feel like my baldness is something i have to be ashamed of - as though it's my fault I have cancer and must undergo treatment that causes hair loss.  But I do... 

lrr4993

Erica - I tried to but gave up.  I made it through the first 3 days after my first infusion, then the exhaustion hit.  I tried to work out the day after the exhaustion day and nearly passed out.  After that I just gave up and decided I would get back to working out after chemo.  I hear it helps with side effects.  I just did not have the energy.  I was also working full-time, so my usual lack of time was a factor as well.

lrr4993

And I am with you on the baldness.  To this day, only my mother has seen me without hair.  Thank God for great wigs.

jenn3

Heidi - wantd to pop in to let you know I'm thinking of you.......

LJ - Have a wonderful time in NY!!!

Mitty - It really does take time for your body to recover from chemo.  I remember after I had all of my eyebrows and lashes back I felt like I was on the mend.  My eyebrows were growing like crazy, had a few waxing jobs done, then suddenly they started to fall out again months after chemo.  I did't completely lose my brows and lashes, but they thinned a lot.  That was when I realized how long this stuff lingers and it takes for us to recover.

Monika - Happy belated bday to your daughter, she looks beautiful like her mother.

Thank all of you for the prayers and good thoughts.

deiag

Hey, Monika!

I´m brazilian - from Recife! o/

I'm gonna go to NYC in june, maybe we could schedule a little get-together somewhere. How's that?

=] 

 I've checked with myriad.com, but it seems there is a testing designed for people of ashkenazi jewish descent and myriad does not go there.  I'll keep on browsing and come back here to post whatever I find. 

Lovelyface

Sugar and Swanny - thanks for your pointers on Rads.  I saw the nurse give another lady a bottle of cream, but so far they haven't given me anything.  Right now, it seems like it is nothing really.  I will try to see if I can find a cream with Glaxol base.  You just go in and out in 15 mins and there are no feelings what so ever.  I hope this will be over soon.

NavyMom

Erica: I did 6 TAC tx and would go to aerobics on week 3 because that is when I felt good enough to go.  I have known many of the women there for 15 years.  I always wore a bandana.  It always felt good to be there among friends.  And when I walked in the room I got a warm welcome.  They called me their "Hero"  I explained that it was easy being brave when you don't have any other choice!!!.  I also bought a stationary bike to use at home.  15 minutes was about all I could do some days.  Rest when you need to, move when you can. 

Navy

EricaH

I actually feel really good after working out yesterday (little stiff though!).  I think I slept better, too.  Today I'm going to try spinning (for the first time in three months).  They'll just have to get used to my bandana...

I just hate having to keep explaining to people where I've been - I'm bald, for goodness sake - figure it out!!

tracie23

Hi Erica, I started Taxotere back in December and have not been able to work out since... the aches and pains and fatigue along with the hung over feeling I can't shake for about 2 weeks makes it unbearable to even try. I am now done with my treatments as of yesterday and I am hoping in a few weeks I can get back to curves... I love curves it's all women from 20 to 80 and I never have to feel like I need to wear something on my head . There are probably about 20 other survivors of cancer that work out everyday. I am sure you look beautiful !!!!

Tracie

mitymuffin

EricaH, I did spinning while taking treatment, and wore my bandana.  Just take it easy and go at your own pace.

NavyMom

I haven't been to spinning since DX.  Just recently getting into Zumba.  Very good work out and fun, too.

LRM216

Oh my!  Workouts, spinning, zumba.......I feel as though I have to lie down now just from reading your posts! 

Suze35

I don't know how you guys exercised! I was working out pretty hard four days a week when I was diagnosed, but got so weak so fast. I'm trying to slowly build up my stamina for surgery, and did 10 minutes on the elliptical today, just about passed out! I plan on doing something every day though now - I want to really try and feel good for my surgery.



Had my pre-admission stuff yesterday, and my heart rate is apparently a little high - around 100. Did anyone else have this? I'm pretty sure it is just me weak and out of shape, but just wondering.



Met with my PS yesterday also, and we decided on a TRAM in the fall. He wasn't willing to do a delayed DIEP, because even though he has a 99% success rate, he said the 1% of failures were always on women with radiation. I'm comfortable with the TRAM, and we like to call him the "superstar" doctor, lol. Staightforward, uber-confident, and only does reconstruction, some of them very serious operations.



My cording in my cancer arm got a bit worse, but my BS gave me a few exercises, and they helped. Everyone seems to think it is a good sign, so I'm going with it.





Heidi - I hope your knee is healing and you are feeling good.



Jenn - I hope your biopsy went well and I'm really keeping fingers crossed it is all ok.

Babs37

Hi everyone,

Went to see my doctor yesterday for my surgery next tuesday and decided on a mastectomy. The MRI and ultrasound showed that the chemo worked really well, so very happy about that!!! But because I had 3 lumps in my breast, my doctor thinks it would be safer to go for a mx.

So tomorrow night will be FUN NIGHT for me. Going to see Bon Jovi in concert. Can't wait!!!! OOOOH.... we're half way there. OOH OOOH, living on a prayer................(my anthem....)

Have a great week-end everyone.

TifJ

Suze- My heart rate was high during entire chemo. 113-120. It is lower now, but still not back to normal.

Titan

Have fun at Bon Jovi concert Babs...sounds like so much fun!

We have talked on here about how music has gotten us through alot of things.

Guns and Roses.."sweet child of mine" always brings tears to my eyes..of all things! 

Sugar77

Bon Jovi was here in Toronto the other night.  A friend went to the concert for her 40th birthday and said he was amazing and he and his bandmates still looked so good!

tracie23

I saw Bon Jovi a few years ago in Houston... It was the best concert I have seen in years. Have a great night you deserve it.

jenn3

Have fun @ Bon Jovi!!!

Lovelyface - My skin didn't really start to change colors, nor did I notice anything until after it was over.  The nurse reminded me to rub lotion on after treatment, after showers and often during the day, just not to put it on a few hours before my appt.  I used aloe from my aloe plant at night, no scent Lubriderm and Miaderm.  A lot of women use Aquafor and love it, my rad onc said it was good, but it's thicker and when the skin is tender it's harder to use.  I was lucky in that my rad onc gave me plenty Miaderm, but it is purchased online, not in a store.  Remember, do not use the aloe or lotions if you have an open area (which can happen near the end of radiation). Good luck!!!

Yesterday was the lung biopsy - long day, but it's over.  Monday is the PET scan.  I'll keep you posted.

MonikaV

Good morning girls, It is raining here in my Sunny California....I can't go out for my run.

Babs How fun ... BON JOVI! I had promised to take my youngest daughter to see him but could not do it last year . She is crazy about him. And I love your Anthem, one of my favorite songs.... 

 Deiag check your private message inbox.

Jenn hang in there. 

MBJ how are you? Have a great day girl.

Have a great weekend everyone

LRM216

Jenn3:

We are all hanging in there with you Jenn - you are not alone! 

msjag

HI everyone, new to this thread.  I am starting rads 3/3, finsihed chemo 2/3, T/C x4.  I read through many pages here and it is so reasuring to know everyone is feeling what I have felt after the chemo is over.  Just gotta hope the chemo worked. Seems like different standards of care at different centers.  My onc said there was no evidience of the adrimiacyn (spelling?) doing anything more than the T/C for node negative, just more side effects.  I just can pray we did the right treatment.  Everyone wants you to be happy chemo is over, they just don't understand what that means for TN, even when you explain.  Hope everyone still having chemo is s/e free, and those doing radiation are doing well.  I am on the March rad thread also, but I'm so glad I stopped here.   It's like you can read my mind without having to explain a thing!

Sugar77

Welcome msjag - glad you decided to join our thread.  You'll get a lot of support from the wonderful ladies who post here.  

MBJ

Hi everyone!  I have the flu and had to cancel my nipple surgery.  Not coming on much, just sleepinmg. 

 Bonjovi:  I hear they put on a really great show!

Jenn:  Sending you many good thoughts!!!!

Lovelyface

MBJ - So sorry that you had to cancel.  You get all prepared for it mentally and then one of these unexpected events happen.  Now you have to start all over, but nipple surgery I hope is not too bad.

msjag - I did not have any node involvement, yet I got chemo dose dense, 4XAC, 4XTaxol.  I always wondered and will always wonder whether I was over treated.  My IDC tumor was 3.3 cm, and DCIS in the same breast was 1.5 cm.......(upon re-test), previously it was noted as 0.5cm, Grade IIA.  I was given the highest level of chemo, which is dose dense, every two weeks.  I guess I will always wonder throughout my life, whether the dose dense with AC was necessary.

Did I tell you guys that my Onc. told my son and I on Friday that since I was 5% positive with progesterone, that I was not regarded as TN.  He is extremely difficult to understand and is highly highly intimidating and demeaning to his patients.  My son and I just looked at each other, not sure of what we were hearing.  We are still not sure whether he meant what he said, that I was not regarded as TN or whether his sentence was so complicated, we couldn't figure out what he meant.  I am seriously looking for another Onc. I don't care if he is smart, he seems not to know about my case.  I think once his patient gets a recurrence, maybe that's where he is good, but he stresses his patients out so much. Whenever I ask him something and he replies, he will add "as I have previously told you over and over"

Lovelyface

Jenn - thanks for telling me about taking care of skin during RADS.  I am currently using Aquafor. I have aloe plant at home too and have put it on my face before, maybe I will try that if I see any burns.

Did you get the results of your lung biopsy yet?  I am keeping my fingers crossed and a prayer on my lips, for you.

PetScan is not too hard to do, there is just waiting after they give you the sugar solution.  The scan itself is not stressful.  The worst part is hearing the news.  I had told my doctor's office to call my son with the result, as I could not hear it and maybe will have a heart attack.  I was so lucky that when I was talking to the nurse on another subject, she blurted it out, saying your petscan was all clear.  I just don't know how one can be comforted to hear news about this kind of stuff.

My prayers and love, hugs are with you. Good Luck on the lung results and the petscan.

Suze35

Okay, I'm having my first "scare" and hope someone has some been there done that stories...



I've had a mild headache for 3 days straight now, it feels like a band is stretching across my forehead to my temples. I am prone to headaches, but can usually break them after a day or two. Nothing is working and I can't take aspirin or ibuprofen as my endo is in less than two weeks.



I did end my Taxol on Monday, but didn't really get headaches from it. I've been using Benadryl at night for a month or so, could this be related? (I plan on ditching it starting tonight.). Tension is an obvious thought...maybe sinuses, though I don't typically have sinus problems.



Obviously, I am looking for anything but the worst...I'll call my onc if this goes over 7 days...just hoping for some similar positive stories.