Calling all TNs
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Welcome Insideout2. So sorry you have to join us. As I can attest to, i had my first breast cancer 28 years ago, all they knew back then was if you had a positive hormone receptor. I did. this time TN all the way around. Genetic testing is very good for your family members and for future treatment depending on the results. Ask us anything. Most on the board have been through it.
Val
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how much your tumor reduce after first session of chemo ?
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Hello everyone.
Just found this board and I to am triple negative. When I first found out I made the mistake of google and boy was it all gloom and doom. Really scary that it makes that much of a difference. I go for my 2nd round tomorrow and I am hoping it goes better than the first.
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Stopping by to say hello and mention that I'm 7 years post diagnosis and doing great. Char and other newbies, all is not doom and gloom. You should be fine. Best wishes to all who are starting your own treatment. Jan
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I want to chime in along with Jan to all the newbies. I'm 7+ years out and doing amazingly well. I'm in the process of wedding planning with my daughter and loving life! It's no fun when you're in the middle of treatment, or just beginning, but keep taking it one day at a time and it will get better. You can do it!
Hugs,
Kathy
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Jan69 & KSteve. I'm glad you posted regarding being 7 years or more and doing great. That does put a positive spin on it for me. This has been such a rollercoaster with the last dip triple negative. I had the surgery first and they didn't have any pathology reports so I just had a lumpectomy. I'm hoping that does't make a difference. It seems most have had the mastectomy.
Thanks for the positive, I needed that right now.
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Thanks Jan69 and KSteve! So great to see node positive survivors! So happy for you both!
Char105 - I didn’t know I had a TN tumor until after surgery and I also had a lumpectomy. Having a mastectomy does not decrease the risk of cancer spreading to other parts of the body , so do not spend another moment stressing about that!
Googling about TN can be horrible, but the truth is that women with your stats do remarkably well. You’re treating this aggressively and I wish you well!
You’ll get a lot of support here!
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Jan and Kathy, Thank you for posting and reminding us that there is hope.
Rebekah
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VL22 - Thanks for the response. I agree google isn't the thing for anyone to do that is TN, but I did find this page that way which is a good thing. I keep taking it one day at a time and trying to stay positive. I guess it was the shock on how much it changed from the beginning to after the surgery. But at least now that all the reports are back this is what it is. Going from lumpectomy, 1 time radiation, and taking maybe a hormone pill, to chemo, radiation and triple negative was the shocker.
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Thanks Jan and Kathy...your reports are so encouraging!
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Right up front, I am not TN. However I did get a response from DiV on another thread in the fall after I had posted about looking for someone who has a similar diagnosis to mine. My tumour is entangled with the brachial plexus neurovascular bundle. She responded saying she lost her arm to amputation due to similar dx. She posted here but not since then I have not seen a post. Does anyone know her? I fear that things have not gone well.
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marianelizabeth, you can do a search for DiV. Click on the search tab and then choose the search by member . I'm sure she would like to hear from you. She posted in early December.
Rebekah, I second the suggestion that getting another opinion from a different MO could be helpful to you--to try to find some peace of mind. During chemo I had no tumor shrinkage from Adriamycin which was depressing since it is such an awful drug. Taxol helped which was a surprise since I thought Adriamycin was the big gun. I hope you're being treated at a major cancer center, if not is there one within a reasonable distance? I've never heard anyone quote 50%.
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Marianelizabeth,
I also "talked" with Div in the fall. She posted after the surgery that things went really well, and that she was adjusting nicely to her new reality. She said she was going to be very busy with rehab, her boyfriend and I think a new puppy. She sounded very cheery and upbeat.
You could try private messaging her. I think she's listed as DiV.
Hope your treatment is effective (and tolerable). Trish
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I did try to PM twice with no response and when I searched the last post I found was also early December. I do hope she is well and adjusting.
I am on Ibrance and Faslodex and opioids for nerve pain and have another scan in March. Thanks all!
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hello all, I'm 57yr old diagnosed in October 2017. Triple neg 2B beast ca. 2 positive lymph nodes. Completed 4 dose A/C chemo. First dose taxol had a reaction, hand/foot syndrome, then full body nasty rash. So no more taxol for me. Been on daily IV steroids/fluids for 3 days now.. Tomorrow I start Abraxane. I am very nervous. I've been reading probably too much about abraxane. Does any one have experience with Abraxane? Ugh! Sorry if I'm posting this in the wrong thread. Thanks!
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Hi Theresa, welcome to the thread! I’m sorry about your diagnosis.
Despite the circumstances you are surrounded by other who will support you.
Doctors usually start with taxol or taxotere if the treatment protocol uses a taxane-based treatment. In case there are allergic reactions their protocol is to use abraxane which is a milder form from the taxane family.
I know someone who had a bad allergic reaction to taxol (paclitaxel) and was switched to Abraxane and she was able to complete her chemo protocol last week
Her hair also started growing for the period of her Abraxane treatments. Of course we all react differently, but that’s a bit of reassurance for Abraxane and hopefully it helps ease some of your worries about the medicine. 0 -
Theresa- I did 3 infusions of Taxotere..each time my rash on my legs got worse and moved up mu leg (first Taxotere it was splotchy patches on shins that peeled, 2nd infusion it was bigger patches, 3rd was an AWFUL burn on my knees and thighs (i had iced my hands and feet during infusions so hand/foot syndrome moved elsewhere on my legs). It was so bad after 3 that oncologist switched me to Abraxane for my last infusion..still got a rash/burn but this time on my butt and back of thighs. Took extra steroids and slathered in lotion. I am now month and half after last chemo and legs are still splotchy but definitely fading
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The clinical trials coordinator at the center I go to (Dubin in NYC) told me that they've just started offering 2 trials to their triple negative patients. One is by NRG Oncology: A Randomized Phase III Trial of Adjuvant Therapy Comparing Doxorubicin Plus Cyclophosphamide Followed by Weekly Paclitaxel With or Without Carboplatin for Node-Positive or High-Risk Node-Negative Triple-Negative Invasive Breast Cancer
The other is by Novartis: A Multi-Centered Randomized Phase II Comparison of Single-Agent Carboplatin versus the Combination of Carboplatin and Everolimus for Treatment of Advanced Triple-Negative Breast Cancer
I'm sure you can look them up on Clinical Trials to see where else they're offered & learn more about them.
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Hello, I'm new here, still recovering from my mastectomy/reconstruction and waiting for my chemo to start. I was diagnosed in November 2017 and had my surgery about 3 1/2 weeks ago. I still can't wear a bra comfortably (any kind of bra, they all hurt!) and I go back to work on Monday 2/5.
Diagnosis was triple-negative and the genetic testing showed no genes that would cause it, and I have no family history of breast cancer so I guess I get to be Patient Zero.
Next week I have a follow up with my general surgeon and I get my port placed. I know it sounds shallow but I'm super devastated about losing my hair; all the other side effects, I can handle.
-A
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Webelos8 - nope, doesn’t sound shallow. I thought I was prepared and cried in the shower for days as my hair fell out. I’m 5 weeks post chemo, my hair is growing back in and I still mourn it.
Sorry you have to be here, but it is comforting to have others to lean on who share your diagnosis. Chemo can be truly awful for some, but eventually you get to the other side of it. You’ll find a lot of support here and great information on all the threads
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Hello, thank you so much for your replies! My Onc is now starting Abraxane a week from today. Was supposed to be today, but she wants to give my skin time to heal a little more, plus 5 days of steroids IV. She tells me my reaction was severe. My rash is fading, swelling on hands gone. Still nervous about the Abraxane next week. I really appreciate the input on this site. Thank you again.
When I lost my hair I found it extremely difficult! Cried a lot. Bought a bunch of hats, didn't like the wigs. After my 4th dose of A/C and the one dose of taxol, I now have white peach fuzz growing...excited...but I think the fuzz will fall out when I start the Abraxane ...such a tease.
we shall see. I moisturize my scalp every night with Johnsons pink baby lotion....0 -
I'm looking for hats, but I'm having a tough time finding any that don't scream "Chemo Patient!!"
*Sigh*
One thing at a time, I guess.
Good luck with your next round, Theresa987.
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Webelos8 - that was my issue. To be honest, It was a huge issue for me. I wore my hair in a ponytail always - a very long one. No wig looked like my hair. I don’t like the wraps. I love baseball hats but let’s face it - it screams I’m bald!
A big part of my issue is I didn’t want all the neighbors to know because I didn’t want to constantly be talking about it or have my kids fielding questions. In the beginning I wore the wig and everyone told me how much they loved my new hair cut!
In the beginning I didn’t fully grasp how long I’d be bald!
I still miss my hair
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Marianelizabeth,
Responding about DiV, I keep in touch with her on FB and will PM her now to update her status which is GOOD! She is a rock star and keeping a very positive outlook.
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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 ..
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Thanks loves green. She got hold of me and I am so glad of your help. Now I will take myself out of TN's but if I were I would be glad to be here!
Marian
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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.
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It's good to "see" you, DiV, although I'm sorry that your visit is accompanied by sad news about Annie. She is obviously missed by many.
Lyn
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Lyn
Hi, yes sad news about Annie. She will be missed and rememberd.
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After scanning multiple forums and not knowing where to post my query, I landed here since many of you have had AC+T and quite a few have had radiation. I've noticed for many weeks now that my face is often reddened, more so on my surgical / radiated side. I wouldn't call it a rash since it's not raised bumps...more like you've walked in a chilly wind or have a mild sunburn. Have others had this? I had prone whole-breast radiation and wouldn't expect the radiation beams to extend to my face, but would it be the chemo so long after treatment?
Also, I have pronounced spider veins (telangiectasia) on both sides of my nose that weren't there before treatment. It's probably a coincidence & can be covered by make-up, but I'm curious if others have experienced this. It's been 11 months since my final Taxol and 4 months since my final radiation tx. It looks like the ugly crepey reptilian look to my skin is probably here to stay. 😟
I know it's a vanity thing that seems shallow when facing a frightening disease, but these visible changes, the hour with the Lymphedema pump daily, wrestling into my compression sleeve, not being able to open jars without a rubber doodad and sometimes feeling like I'm walking on stilts because of neuropathy in my hands and feet make it difficult to try not to constantly think about cancer. (My apologies to those with mets for whining about what must seem like trivial complaints.)
Lyn
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