Calling all TNs

Webelos8- I found hats on amazon, having a lot of fun with them. I find myself buying the bucket hats ( like the flapper hats from the 1920s) I love them! I get compliments galore on the hats. And they are priced well. I don't like the "chemo" hats at all! Check Amazon and go a little crazy with the hats! Its fun.

They also sell just ponytails or bangs...to wear under the hats...check those out too.

I have a week to think about starting Abraxane,, and overthink it ..

I was off the boards for awhile and I'm so sorry to hear about Annie. I trolled this site during my 1st breast cancer diagnosis and read the triple negative board. Mandy I'm so sorry and hope you find comfort in this:

This is for Annie,

I want you to know that you were one amazing lady.

You were so good to the people in your life. So considerate and caring. When you gave, it was so easy to see that it came straight from your heart...and it gave everyone around you the gift of a nicer world to live in...

I love how strong you were inside. I always saw that quality shine in you, and it reassured me to know-even though you faced hardships and uncertainties just like many people do-there's a way through and a brighter day ahead. You're my reminder to be a little more brave, to not be afraid, and to remember that things will turn out okay in the long run.

I loved the way you didn't let the crazy, difficult days get you down. I admired your ability to put things in perspective. To laugh when you could. To cry when you must. But always to try and make things better.

I hope Mandy you'll never forget how much all of us treasure being on this post with Annie. And I love knowing that everyone else feels the same way. To Annie's friends she made on this site, she was everything a friend should be. To her family I know she was dearly loved and truly the best.

Annie was such a deserving person. And I really hope that all your days are as beautiful and as bright..as the ones Annie inspired in our lives on this site.

Lyn

Hi, yes sad news about Annie. She will be missed and rememberd.

Theresa987, welcome to my world. I had AC and did okay. One month into weekly Taxol, I broke out in full body hives. Then immediately after that ent away (5 days), my lupus rash flared up...or what they thought was my lupus rash. Every week after Taxol, the rash would flare up and then slowly fade before the next infusion. I had nightly low-grade fevers, but no infection. So they switched me to Abraxane for my last 4 infusions. It didn’t make any difference whatsoever. After Taxol, the rash cleared up. Then with radiation, it came back again, definitely the lupus. I have photos if you want to compare rashes.

VLH, our skin takes a beating while going through treatment. It took a while for my skin to get back to its pale normal. I read an article yesterday, let me go get it and link it here.

I came here today to post that I just got back from my Oncology checkup and he says I’m doing great! I’m five years post diagnosis and had my mastectomy exactly five years ago today. I now have graduated to once a year checkups.

With that said, I’m so so so sad to hear about Annie! I can’t even describe what she meant to all of us here! She was so kind and made us all feel better! She will be missed so much! Rest In Peace our dear, sweet Annie! XOXOXOXOXO!!!

For those of you who are still in treatment, just hang in there!! I still pray for everyone here every night. I don’t post much anymore but I do check in often and pray!

Theresa, I did Abraxane instead of Taxol and did well. I did get pretty tired towards the end but I didn’t have any harsh side effects. Hope you do well!

Everyone, just take one day at a time and remember to laugh and smile! I lost mine (smile) for awhile, and I think I’ll always think about cancer, BUT I do think about the better things in life so muchmore than I used to! It will come! Just be patient! Love all of you!! XOXO!!

Thanks, LoveMyVizsla. Although it sounds like distressing news, I look forward to reading the article. Another thing I've noticed since treatment is that the nail on my big toe is so pale that I can barely discern the moon from the rest of the nail. I think that can be associated with anemia. My last blood tests showed my RBC is finally back in the low normal range, but I assume there's a lag time with nails.

YAY for you, Luvmydobies!

Lyn

I was diagnosed 8/2017 with triple negative. I went through 16 weeks of chemo AC, then taxol. Waited 4 weeks just had surgery on 1/25/2018. My question is, the post surgery pathology said that the chemo killed 90% of the tumor and the sentinel lymph nodes (4 were removed) were clear they showed no signs of cancer. The margins on the lumpectomy were clear as well - how successful does it sound that the chemo before surgery was a good thing. I am so ridden with anxiety, I just wish I could have a good day without this anxiety, fear, and depression. My Ki-67 was really high from the first biopsy they said 90% which scares me, but post surgery the Ki-67 was 5%.

Hi all! I just read this article in the news today and wanted to share.

https://med.stanford.edu/news/all-news/2018/01/cancer-vaccine-eliminates-tumors-in-mice.html

Hello, TN friends! I’ve been away for a couple weeks. I’ve been working on pre-radiation tissue expansion so only heading to my medical center for a few minutes a week. It’s been a much needed break. Last expansion is on Friday and then I get ready to start 5 weeks of radiation. I think I’ve read thru the posts that I missed but there’s too many for me to respond individually. I send you all my best thoughts wherever you are on your journey!

On the most recent posts about heart disease & ACT, I saw a cardiologist before I started and he put me on meds in an effort to “protect” my heart. He said there are differing opinions on how effective this is but since there was very little downside, I agreed. My echo was unchanged after AC plus Taxol & Carboplatin. I’ll stay on the meds for this year and then likely stop unless something changes. My mother died of a heart attack pretty early in life, but she did smoke for some years. Perhaps part of his recommendation came due to my family history.

I also find the immunology study very encouraging!

Trisha-Anne, did a heart scan find the damage? Did something prompt the scan?

Hi, DiV. I saw that article too. Hope you are doing well.

PKVille, your reports sound great! No nodes is awesome, and 5% is good too. Anything 20% and up is considered high. The worrying decreases as time goes by, but hasn’t gone away totally for me.

Welcome to the group. I do find  it useful even though I don't post too often, but I find comfort in reading other's post. I have been waiting for my final pathology for almost 2 weeks and it's making me crazy!!!! My mind is going to horrifying places. I did have a clinical complete response meaning my drs couldn't feel anything left after treatment, but maybe they were wrong? The what ifs take over. I keep wondering if maybe there are some cells that were left or maybe a larger portion. Did anyone on this board have a double mastectomy with immediate reconstruction and then have radiation?? Thank you for any responses that come!!!

A4ggy...I had a BMX followed by radiation. Chemo first, then my BMX was in October and they placed tissue expanders. I finished radiation two weeks ago so my radiated breast is still healing. The skin is looking less burned but still very tight over the expander. I start Xeloda tomorrow for 6 months then can finally have my exchange surgery. Prayers that your path report comes soon and is good news! I had a little bit of residual cancer after the chemo, so that's why my MO is having me take the Xeloda for six months, just a final clean-up.

Hi A4ggy,

I did NOT get a PCr, had a bit of residual left. So, that was reason for radiation for me. My MO suggested that having Xeloda wouldn't affect my recurrence risk much - that radiation was the "proven" next step- and, even though it wasn't a systemic approach to prevent recurrence, it was down the road a systemic approach given if I developed local recurrence it could spread beyond.

I had carboplatin in my mix of chemo and my MO felt it zapped any micro mets systemically. I agree. Gotta believe.

And, as Johns Hopkins says, most recurrence occurs within 2 years post diagnosis.....I'm past that.

I have been fighting the flu this weekend. It does scare me that my immune system is lagging because I got the flu. Then again, I am trying to convince myself that most of those who have gotten the flu this season aren't destined to develop cancer. My how the mind can work!!!

Janet

Hello Everyone

I had to step away from the boards for a while.

Luvmydobies you are an inspiration. Your posts have helped me so much in this journey I did not choose.

Div so glad to hear from you. Your words about Annie are beautiful. She helped so many of us. She was my lifeline as well as others on this board when I was first dx'd.

For those still in treatment, just starting, or finishing up, hang onto us. We hold your hand virtually, though we may not always post. So many of us have been through these awful treatments. There is light at the end of the tunnel. As I'm learning, it may not be as bright as we hope, but it is light all the same.

I remember my first dx, 28 years ago, I thought my life had ended, I would never see my children grow etc, but I've lived to see so much more.

Batesburg my MO said the same thing, that Xeloda would cause a lot of discomfort, side effects, with not much gain. Especially with the chemo , plus radiation.

Welcome to the newbies. Ask, and if we don't know we will search, but usually there is someone among us that has had the experience. Additonally as has been mentioned, The chemo thread for your month is invaluable.

Hi LMV, yes we did a couple of scans and ECG. I was feeling unwell, my legs and ankles were swelling drastically and I was getting breathless at times. My MUGAs during Herceptin were fine and didn't drop very much. 

I knew the risk from doing chemo (twice!) and wasn't terribly surprised at the result, but it still sucks.