Calling all TNs

Steph - so sorry about the mets. Praying that this chemo is easier for you and blasts the sh*t out of the mets. TN SUCKS!!!!



Cali - I'm so sorry for the position you are in. Ultimately, right or wrong, it's your Mom's decision, but I can't imagine how hard this is for you. I have nothing against alternative medicine, but I don't think it's an effective weapon against TN. Have fun with your grandchildren.



LuvR- thank you so much for that link.



Lisadi - congrats!!!



Nuan - welcome to our group and congrats on the good MRI.



Fishinurse - vent away, that's what we're here for. While my friends are wonderful, I only truely felt comfortable coming here to vent. Nurses are strong.......you will make it through this.



Fern - the fear really is worse than the reality. I'll echo Dormac, drink, drink and then drink some more. Stock up on some laxatives and Immodium, so you're prepared for whatever your bowels decide to do.

To avoid nausea, of course take your meds, but make sure to eat something small every few hours. I thought it was nuts, lol, when somebody posted that tip, but it really worked for me. (I only had one brief episode of nausea thru my whole treatment).



Brow - I had no pre- meds with my treatment. No matter how we prepare, it's a punch in the gut

when you lose your hair. (HUG). I agree with Cali, I found it easier

because I had fun with it. (5 different wigs). When I went out with my friends, they were making bets on what color of the day I would appear with!



Bak94 - praying for a clear bone scan.



Minxie - Sounds about like what I had. I used Bactine no sting spray with lidocaine to numb it so I could get some sleep. Salt water my be very soothing, but sun, sand and sitting in a damp bathing suit don't sound like a good idea.



Christina - if it helps reassure you, I went to one of the top centers in the US and got A/C and Taxol and no scans during treatment.



Cocker - you need to have some fun with the tut-tutting Dragon. Pack a really glitzy gaudy hat, a boa, high heels and a large bottle of whiskey. About 5:00 am, in your nighty and knickers, put on the hat, boa, heels and grab the whiskey bottle. Sneak out the side door and then ring the bell. You'll shock her so badly, that sneaking out to have a fag will seem mild in comparison *gigglesnort*

Hello lovely ladies...Just checking in. This is the first time I've really felt up to it, although I'm doing my best to keep up with my reading here.  It seems my cognitive skills are coming back on line.  But I'm still having some balance problems on my right side. I have a walker, which I hate. I mostly use it outside the house.  I love walking in NY, but I haven't been able to do that! I have a physical therapist coming to the house today and hope she will help me graduate to a cane.  I would be much more mobile. Still going for daily brain rads, and now my hair is falling out again in gobs. Oh well, the least of my problems,right? Still living on something of an emotional roller coaster....sometimes I'm fine and sometimes I cry alot. Thank goodness for Ativan. Also still no  no word from my MO who put me in the hospitalto begin with, and no word from the RO who's treating me now.  I just see the techs.  What's up with that? 

Inmate - I think of you all the time.

Lovely - thanks for the kinnd words. Yes we were on the same schedule but you never know where this effing disease will take you. Not to worry though...I still think my situatiion is very unusual.  More later, I hope.  Have a good day, all!

Hello lovely ladies...Just checking in. This is the first time I've really felt up to it, although I'm doing my best to keep up with my reading here.  It seems my cognitive skills are coming back on line.  But I'm still having some balance problems on my right side. I have a walker, which I hate. I mostly use it outside the house.  I love walking in NY, but I haven't been able to do that! I have a physical therapist coming to the house today and hope she will help me graduate to a cane.  I would be much more mobile. Still going for daily brain rads, and now my hair is falling out again in gobs. Oh well, the least of my problems,right? Still living on something of an emotional roller coaster....sometimes I'm fine and sometimes I cry alot. Thank goodness for Ativan. Also still no  no word from my MO who put me in the hospitalto begin with, and no word from the RO who's treating me now.  I just see the techs.  What's up with that? 

Inmate - I think of you all the time.

Lovely - thanks for the kinnd words. Yes we were on the same schedule but you never know where this effing disease will take you. Not to worry though...I still think my situatiion is very unusual.  More later, I hope.  Have a good day, all!

Been away for the weekend, got back and just read all your posts to which I will never be able to respond to them all - but doesn't mean I am not thinking of you. As Thursday looms closer my ability to concentrate on what I have read is diminishing with every minute.

Cocker: I would like to say ‘bout bloody time you got back to us... stupid chemo brain making you forget your laptop.

Bernie: thanks for your humour.

Welcome to the newbies (of which I still consider myself one). Sorry you have to be here, but you've found a great home.

I am sorry that some of you wonderful ladies going through more crap and sending you positive vibes for the right outcome.

I am finding it very difficult to even say what I want at the moment, except I am so happy to have you all here. I have found so much strength and inspiration from your posts... the laughter, tears and rants.

Hope your day is filled with love and laughter and those going through chemo, with very minimal SE's.

Love and hugs xxxx

Bernie.......your chemo diary absolutely had me rolling in tears.  You just can't make that s**t up.  Yours is the perfect example why I suggest to all newbies to start writing it down.  When you look back you will find that even when it's bad, there most certainly is a good laugh that can be had.  Love you for all your humor.   

Hi Hope-Thank you for checking in. I also hope you get to where you can use the cane. Yes, the hair does seam like a small part of all of this, but upsetting anyhow. Do as inmate does, rock that bald look! I hope that the rads are smashing those cancer cells into oblivian!

Hi Inmate! A gal on facebook triple negative had a question for her mom on skin mets. You had mentioned a trial for a topical chemo cream? I had heard about something like that awhile back. The other problem is that she may not only have skin mets but a tumor on her chest wall. Do you mind speaking with her if I can send her over here? I am wondering if I can send a link to this page? Well, I will try. Is Xempra a pill or infusion? I hope it trests you well and kicks some *$$.

I need some advice.  Have any of you been given lymphedema exercises and not done them?  Have you had any problems by not doing them?  I've gone back to see my lymp PT to see if my lymph puddles are a problem.  Of course she gives me more exercises to do and told me I must wear my mastectomy bra all day.  OK, I say, I'll do it for a week.  Never got around to doing exercises, but did wear bra all day for 3 days.  Then I totally gave up.  Wearing the bra is so uncomfortable for me after a couple of hours that I know that no matter what, I'm not going to comply.  So the week is up tomorrow and I have to face her with my "failure."  I have an US on Thursday and that is stressing me out too.  I want so much to put this all behind me, but it keeps sneaking up on me.  It's almost to the point where I want to curl up on the couch all day.  OK, I'll put  on my big girl panties and face the music tomorrow.  End of rant.  Jan

Lory - You have a lot more to be concerned about than I do.  Insensitive medical providers make me crazy.  It seems the more the worrisome issue is, the longer it takes for them to notify us.  Sure hope s/he calls soon.  Good thoughts heading your way.  Jan

Hi Ladies,

Sort of tried to take a break from the site for a little while.  Felt like my anxiety is getting worse. 

I don't think I'll be able to get caught up, just know that I think about all of you every day and I don't really think I can stay away for too long.

Hope and Inmate I'm praying for you.  And I'm sorry that all of you new ladies have to be here but you'll get the best support and guidance from these wonderfull ladies.

For the newbies losing their hair...here's a picture of my bald head last year at this time (July 27):

And my hair as of a couple days ago (10 months after finishing chemo)...

I hope this helps - to know that it will grow back pretty fast once you're finished with chemo.  And I agree with keeping a journal, or a blog, or whatever means that allows you to express your feelings as you go through this.  My blog has been cathartic for me, helpful for others including people I don't even know, and it keeps all our family and friends informed without me having to rehash stuff too often.

And I didn't take any meds prior to showing up for chemo (I had DD AC/T).  I got all my anti-nausea meds and just 6 mg of Decadron about an hour before my AC push.  I also had an hour of IV hydration, which points out the importance of drinking enough fluids.  My goal was at least 96 ounces every single day.  Drink anything, just make sure you do it.  And juicy fruits like melon, grapes, oranges, whatever tastes good.  They all count towards that fluid goal. 

Kathy is right on about eating small meals.  I couldn't eat much at a time, then I'd get hungry.  It wasn't unusual for me to have two or three breakfasts.  The nausea seemed to be a little like pregnancy morning sickness.  Being hungry made it worse, so eat frequently and get at least 90 grams of protein to keep your blood counts up.

 Inmate - sending lots of love and luck for success with Ixempra! You are overdue for a successful long ride on one chemo!  Do you still have a port?  I think this is an IV drug.

Hope - glad you were able to check in, hope things improve daily for you!

Lory - I am hoping your liver CT shows "all clear!"

For those of you finishing rads, I think you'll be surprised how much better everything will look after two weeks.  I don't know about salt water too soon afterwards, be sure you don't have any open wounds.

Oh, did I mention...I bought a bike on Sunday, and now DH and I are going for rides together.  So far I've done two 6-mile rides.  There is a nice paved trail very close to us and it's a beautiful shaded route.  The trees form an almost complete canopy over the trail, there are all kinds of wetlands along the route, and it's nice to see families out together.  Tonight's ride kind of kicked my butt, I'm not exactly in shape and I don't have much stamina and we did a different part of the trail that had a bit more elevation.  I think this will really help me to stay strong.

I have not heard from Jenn3 for sometime.  I know that she had taken a fall at home a little while back and was spending much of her time in bed.  She is a real sweetheart and one tough cookie.