Calling all TNs

Mity, thank you so much for coming on and posting.  We love to see posts like that.

Cat, I'm sorry about the clinical trial news.  Hopefully, the one in Chattanooga will work out.  

Tek...you are getting there with the taxol treatments.  I also got more tired with each infusion.

Lisa, I had signed up for the webinar, but forgot about it.  I've listened to several other ones they have done and they have been very good.  I'll be sure to check it out.  Thanks for the info.

I'm slightly more than half way done with rads now....I did #18 of 33 today.  Skin is just slightly pink.  I'm keeping my fingers crossed that I'll be one of the lucky ones and get through rads without too much discomfort.  It is nice how fast rads go compared to everything else.

Awww....Thanks Cocker.  I will be traveling to see him in about 3 weeks        After that he will be going to Eastern Europe.  Guess its time to get my xanax prescription filled!  I pray that things get resolved in that area of the world.

Wishing everyone a peaceful day.  I am getting together with my family tomorrow.  We are celebrating my parents birthdays.  They both turned 80 this month.  I am so grateful for their good health and happy attitudes. 

mitty..congrats for being 4 years out!

lisa: thanks for the info, checked lbbc.org. Is it the one related to metastatic bc (that one has the dates you mentioned)

if possible can u post the exact link.

navymom: wishing you and your parents good health..both mom dad turned 80 happily and healthily!! wow!

cat: thinking about you...keep fighting girl!

Hi Cat, I'm thinking of you today. I, too, have just been told that I don't qualify for the PD-L1 trial that I was trying to get in. I thought it was for tnbc, but my MO said they wanted to test on ER+ breast cancer. Even though I'm tn, she was hoping I showed a little ER, but nope, not a bit ! So, we're going to see how the Halaven works, and keep the other 2 trials (that she is pretty sure I will qualify for) if and when the Halaven stops working. I'm a little discouraged because the other 2 trials limit cell growth like other systemic txs, it's not an immunotherapy tx. My body seems to find a way around the systemic txs, so I'm praying that more trials come up or that the parameters expand to allow me to try the immunotherapy ones.

I also am not too happy that my blood levels are low again, even after a 2 wk break. So it's back to neupogen shots next week. I'll be traveling downtown 4 of the 5 weekdays, next infusion is next friday.

Well, enough of the belly aching.... I'm missing my daughter... she went to Disney with the marching band, and won't be back until Sunday. My other daughter is going to a school show tonight, so I convinced my dh to take me to Ruth's Chris tonight (before chemo-narcolepsy sets in). I know it's not the best thing to be eating, but I haven't been there in like 5 yrs. (I'll make sure I eat broccoli if they have it). We all need a little treat occasionally, right??

Wishing all of you a wonderful weekend.  Enjoy!

Hi everyone. Sorry I have not been on but was just feeling sorry for myself. My surgery was put off til May 12th due to a lack of surgery rooms. Unfortunately Roswell Park Cancer Institute is a very busy place. I just want this thing out of me!! 

Thank you to all who continue to share their updates after treatment. It is an encouragement. 

I am getting the short haircut tomorrow. I figure I may as well get used to it short. May be easier to take when it falls out. I will be donating my hair so something good will come if it!

I'm new here as of tonight. I was diagnosed in April with a triple negative. At first I jumped up and down because I thought it was good to hear the words triple negative. Needless to find out it's another whole ball game, I am finished with my core biopsy and now headed for my Sentinel Node biopsy and a Port a Cath.

I pray this disease has not spread in my lymph nodes yet. A few weeks from now I'll know.

I have faith so far in the Dr's that I have chosen and now it's all up to my strength and God's hand.

I hope to find friends here to help me muddle thru this journey that I take a day at a time.

BanR

A nice pat on your back for the donation of your hair. 

Thank you's come from so many that need the hair so badly

It's not the best circumstances to do it but I'm glad you made the choice to donate.

Bonnie a newby here recently diagnosed with triple negs and ready to begin my journey to a healthy body again.

God bless you

Bonnie

LoveBonnie, welcome to this group! It can be so scary at first, we have all been there. but believe me, you can do this.  Yes there will be side effects, no doubt. But all are tolerated and you can do ANYTHING that will save your life. Be strong, and we will be right here with you. Meadow

Coop, that's great news. I am starting on carbo/taxol this Friday. How have you been doing on it? Side effects? It's gotta be better than AC?

BanR, congrats on finishing rads.  I'm three weeks behind you.  How is you skin?

Coop, congrats on the huge shrinkage!  That is awesome.

Mompv, that is a good idea to get the short haircut first.  Way to go on donating your hair.

LoveBonnie, your post about jumping up and down about being triple negative made me chuckle.   I imagine most of us (including me) had never even heard of the term "triple negative" until we got our own diagnosis.    Now, it's the phrase that runs through my head the most often throughout the day.  Before starting chemo is a stressful time because you don't really know what to expect.  You can do this!  My one bit of advice is to look for the chemo thread for your month here on this site and participate in it.  As the months go by on chemo (and beyond), those ladies will help tremendously with nitty gritty chemo-related stuff.

Slowloris and Cat, thinking of you both.  I'm hoping the Havalen works for you Slowloris for a long time with minimal SE's.

ALHusband - wonderful news on your wife's scan! I'm so thrilled for you both! 

Simplelife - you really struck a chord with me when you said your diagnosis mimicked PTSD. I feel the same. Congrats on being half way done with rads! I'm so glad you've had minimal side effects so far. 

Megomendy - thanks for the well wishes. So far taxol/carbo is easier for me than AC. AC never made me nauseous, but I always felt really blah and spent a day or so on the couch. With this, I definitely feel better, but I will say I'm more physically fatigued. I'm just trying to take it very easy and not overdo it. Good luck with the new regimen. Hopefully you feel better on it as well.

Jianchi - sending you prayers that the lumps turn out to be absolutely nothing. 

Slowloris - I've always wanted to go to the Southern Caribbean, but Tahiti sounds fabulous too! Best of luck with your treatment. I'm glad to hear your side effects are minimal. 

Cat - I'm so sorry you didn't get into the first trial. Sending prayers that you're able to get into the second one and that the taxol is working in the meantime. 

Mity - congratulations on being 4 years out! Thanks so much for coming back and updating all of us. 

BanR - congrats on officially being done with rads! 

Coop - that is great, great news! 

LoveBonnie - I'm so sorry you're joining us, but this is a wonderful place for support. You will fight and you will get through this. Wishing you all the best. 

The blood filled cyst on my ovary is gone, gone, gone! So that was welcomed good news. My onc still ran a CT of my abdomen and pelvis just to be sure nothing else is lurking. I should have results early next week. I hate to admit this, but I've really been struggling mentally the last couple weeks. I think I was in a sort of denial the first couple months after dx and now I feel totally in the thick of things and it's hard to get my bearings back. Did anyone else hit a wall mentally during treatment? 

Cocker- That is hilarious!

Allydp,

I am only 9 months out from my initial diagnosis and haven't finished rads yet, so I'm still somewhat of a newbie.  

Even so, looking back at my time in chemo, I had some really nightmarish times mentally and can relate to your last paragraph about having some tough emotional times.  It took me a while to figure things out while on chemo, but after many episodes of being on the floor uncontrollably sobbing, I realized that each episode was pretty much tied into when the steroids would wear off with each infusion.  There is no doubt that getting a diagnosis of TNBC takes a lot of emotional adjustment, but part of the emotional lows that you are feeling just might be chemically induced.... either by the steroids they give you with each infusion or by some other medication.  I was more than half way through chemo before I finally fessed up to my MO as to how bad those steroid crashes were for me.  She immediately gave me ativan and another medication.  After that, when the crashes would come, they were still horrible, but I could recognize the chemical component of them and counteract it with the medications and go to sleep.  Usually, by the time I woke up, I was feeling better.

I learned from the Sept. 2014 chemo thread that I belong to that I wasn't the only one needing ativan and other help to get through those times.  I'm not a big drug taker...before my diagnosis, I took no prescription meds and rarely even took an aspirin or tylenol.  However, my husband and  I both realized during chemo crashes that I really needed help.  He was usually the one that would help me see that I was going down the rabbit hole to that dark place when the nightmare  crashes would come.  Going through chemo right after diagnosis is a special time.  It does get better, but the SE's of chemo and all the drugs that go along with chemo can really make for a physical and emotional roller coaster.

I'm just writing about all this to let you know that you aren't alone by any stretch of the imagination in dealing with really dark times with this diagnosis and with chemo.  

I feel like I'm done with  the worst of dealing with an initial diagnosis of TNBC.  I still get down occassionally when radiation fatigue has me wiped out, but NOTHING like those dark days of the steroid crashes from chemo.  Surgery and rads have their own set of problems, but they are far easier than chemo as far as I'm concerned.  It really does get better.  Hang in there and seek help from your doctors if you feel you need it.  There are things they can do to help you through this emotionally difficult time.

Hugs,

Kay

When do you consider your anniversary of being cancer free? Is from diagnosis date or surgery date? 

Kay, thank you so very much for your thoughtful and kind reply. I read it with tears in my eyes. I feel like I'm losing it at times and it's nice to know I'm not the only one who has struggled. I think you might be on to something with the steroids. I have so many other negative SE's from them, but never correlated the mental crashes before. I was also like you, didn't take much of any pills before the dx other than thyroid medication. I've reluctantly started taking benadryl and ativan for sleep. I'd hate to have to take another ativan during the day, but I just might on those tough few days post chemo, since that is truly when I struggle. I know this isn't justified or realistic, but I'm so disappointed in myself for not being able to stay positive and keep a smile on my face. I just can't seem to control my thoughts at times. Out of nowhere, I'm 10 minutes into planning my funeral and I've got myself all worked up. I've never had this type of anxiety previously in life and it's upsetting that I can't seem to snap out of it some days. Again, thank you for such comforting perspective. Hugs.