Calling all TNs

LRM- Thanks for the good info.  I'm setting out the 2 week rule, tho I have aches and pains that definitely would qualify!!  haha   NO one has examined any of my lymph nodes since surgery in June.  I get bp/temp/lungs/heartbeat and asked, how do I feel?  I always said OK, since there wasn't a change from the last time.  I feel lousy ALL the time, lol. (other medical issues)  Decision made~ I'm changing my onc!  I have 3 months to get in with Sloan Kettering this time Thanks again LRM!!!

ps I agree that Diane was the one at the far end of the bell curve. unfortunately. 

Great Open House tonight! (burp)

Everyone *loved* my hair (just washed it and air dried)  and said I looked great.

Felt good to be surrounded by so many good and caring friends in my own home.

Lots of good food still remaining.... uh-oh.

I was told to take Vitamin B6 to help with the nails. Also, you can take bags of ice to chemo and keep your fingers cold while the chemo is infusing, which will reduce how much gets into the tissues of your fingers. Good luck!

Hi Moe,

 My doctor allowed me to take Biotin while on chemo to help with nails,skin and hair. Ask your Onc. About the emotions.... In the beggining I felt like that. Until one day the psychologist from my cancer support group talked about living on the "now" meaning sometimes we get so sad thinking about the future that we forget to enjoy everyday. I thought"wow"  ! She is right . After that day everytime that I started feeling blue I would turn the music on loud and dance until I was smiling again. Hope that helps. Hang in there. 

thanks ladies, I will ask about biotin and b6...I love the music and dancing idea!  

Moe0279: I feel the same way you do. Most of the time I feel ok but out of nowhere some days, I have a bit of a panic attack and I have to have a good cry. And now if a listen to a song that "means somethig" to me, I cry. But a good friend of mine said to me that you have to let it out. Don"t keep your feelings about all of this inside you. Talk to someone, a good friend or a family member that will just listen and be there for you. And yes, like MonikaV said, listen to loud upbeat music and dance and sing out loud. Doctor Oz said that listening to "loud" music for 20 min per day is good for us and it helps keep us young! I know I do it more often now when I feel I need to go in a happy place in my mind! And for your nails you could try to put a clear coat strenghtener on them. It helps for me. 

dlcw: When I was on DDAC, I had to have Neupogen(same as neulesta) shots, 3 days after chemo and that for 7 days every time. And I had aches on all my upper body, from my jaw down for about 4 to 5 days every treatment of Neupogen. I couldn't put my finger on what was hurting inside. Sometimes I knew it was my bones but somtimes I thought it was in my nerves. My skin hurted to the touch. My nurse told me to take Tylenol or Motrin before the aches got to bad. I have now the same aches on Taxol and I don't take Neupogen with it. I get my Taxol on thursdays and every  following saturday, for only that day, I ache from my jaw down. It's like if every node in my neck and upper body reacted to the Taxol. Sometimes it's pretty bad so my doc prescribed Dilaudid for when I should need it because Motrin and Tylenol do not work on that pain(but it work on the Neupogen pain). Go figure.... I suggest you talk to your doctor or nurse about it and see if they could prescribe something to help with the pain if the rest doesn't work.

Good luck.  

Between the Neulasta shots (and mine got the worse on day #9!!!! Like clockwork) and the chemo - everything you are feeling is totally normal.  Mine got so bad on the taxotere (and Neulasts for that too) that I had to resort at one point to actual narcotics I was in so much pain - almost totally debilitated at one point.  Nasty, nasty stuff, and I pray to God it just remains a bad memory and I never have to have it again.  Not real sure I could muster up the stamina to go through it again, and I mean that!

Moe:  Aches and pains, a severe case of the blues, all of it goes hand in hand with chemo and BC.  It will get better! Hugs!

Ladies, Have any of you experienced significant fatique after finishing radiation? I'm soooooo tired. I finished radiation on Dec. 30th (the last 6 were boosts) and I think each day since I've been more tired. Any thoughts?

LRM216 - As you might know I am East Indian so when I first got diagnosed in July 2010, I kind of heard around my family and friends, who else amongst the Indians had breast cancer.  My daughter in law to be, told me of this lady who was her nanny who had been diagnosed in Dec. 2008 of TN breast cancer.  She had a recurrence in Dec. 09, exacly one year later, and just this past Aug. - Oct, my daughter in law and her mother were telling me how well she was doing, her hair was coming back, she looked like an actress.  She was juicing everyday and was doing very well.  Around 12/15/10, she had a third recurrence and now she is dying, doctor gave her one more month time.  Her daughter who is a medical student flew from the Carribeans and admitted her mom in a PARP Inhibitor trial going on in Sacramento, through Kaiser.  A UCSF doctor helped her.  We are all praying and hoping that some miracle might happen and she will make it.  But this case totally reminds me of Angelsabove, this has been so quick and fast.  From looking fabulous and being extremely active to the quick downturn and to death.

If only doctors could tell us whether ours is basal-type or basal-like or whatever.  I did ask my Medical Onc. and he did not know which type I had.  However, the Pathologist describes my tumor as having a dumb-bell shape.  Wonder what that means. I tried to look it up, but did not find anything.  As you know I have insisted on a second opinion so this week, the UCSF (my second opinion place) is testing a few more blocks of my tumor.  I still don't think they will tell me about the cell type.  I think that should be a must. I just can't believe, now that I have cancer, how things are at present, almost inhumane for cancer patients.  Everything should be so thorough, there should be so much more attention, since this is a killer disease.

What bothers me the most is that whatever tests have been given to me, I have to ask for it.  I asked that my Vit. D levels be checked, I showed them that the radiologist had recommended on the MRI that there be another MRI in 6 months.  This is scary to me that I have to ask - I, being a layman.

Lovelyface:  Are you saying that this woman who is dying had basall type cancer cells?  I believe mine is that and I thought all TN's were that.  Mine was barbell shaped also.  I hear the distress in your voice and I am sorry to hear that you are upset.  Wasn't Angelsabove also BRCA which is a more aggressive cancer and has a tendency to come back?  Is it possible that this is what this woman has?   I don't think that is it matters what nationality we are.  Just because this woman is also Eastern Indian doesn't mean you will have a recurrence or the same outcome.  You may never have to deal with it or it may come back.  We have a 60% chance of surviving.  I like to hold on to that fact rather then succumb to my fears that I could be in the 40% chance group.  Hugs.

Moe - I had weekly Taxol and struggled with neuropathy.  I thought neuropathy meant numbness, but was told my my dr that the pain in my toes and fingers was from the neuropathy.  There isn't much you can do if that is what you're starting to deal with.  However, make sure to talk to your onc about your symptoms so that he can keep an eye on you and give you medication for the pain if necessary. I also had terrible pain from the Taxol and had reached the point that I couldn't even stand to be touched.   I didn't have black spots on my nails, but did have white patches and ridges.  I took extra care of my nails and kept them short.  The emotional ups and downs are like the others said, they come with the territory - the steroids give us highs and lows along with the emotions we have to deal with from the dx and treatment.  It'll get better.

Mitty - Yes, I was very tired.  I fought it, but I was tired.  I would come home from work, fix dinner and go to bed. 

GO SAINTS!!!