Calling all TNs
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Thank you much Anne and Jojobird. It helps a lot to hear good vibes and awesome outcomes. We had our appointment today and my mom will have 4 cycles of Adriamycin by itself in a dose dense every 2 weeks.
She is very happy she will be done sooner so she can go back to Italy(home) for couple of weeks before her 6 weeks radiation starts (she misses home and I also want her to be mentally ready for the treatment)
Jojobird good luck on your 10k I love running myself, its very difficult now to do it with a 18 months old, doctors appointments for mom and a job. Hopefully I will be able to start training soon for another half marathon.
Take care
Love to all Cristina
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Dova: My wife was stage 3c out of the box. She did 4 AC dose dense followed by 4 Taxol, dose dense, as I understand the prescribed treatment regimen if the patient can tolerate it. It's hitting the cancer with the strongest drugs right off the bat. She had a good response and went into remission. It's my opinion that your mom should have testing on the tumor sample for PDL-1, PD-1, as well as other tumor markers for down the road just in case. Foundation One does complete genetic testing. If it were to come back and she is in a high-risk group one thing you don't have is the luxury of time that it takes- weeks to do the testing, getting the results back, finding a clinical trial that one is a fit for given previous treatments, etc. Do research and be ready just in case. Unfortunately my wife's TN returned aggressively after 18 months and there was valuable time lost while doing testing, increasing tumor burden which can overwhelm the immune system further. The oncologist administrating the clinical trial told us when asked that due to the secrecy of the trial he was not allowed to reveal the test results the trial paid for the markers/immune checkpoints that would give an indication as to how effective immune checkpoint inhibitor drugs like Keytruda (pembrolizumab) might be. Bottom line was, she entered the trial without us knowing, although there may have not been many other options available. If the insurance company doesn't want to pay for the testing and you can afford it I would suggest it. It's a learning curve and we must share information to help others so they don't have to waste valuable time as we did. My wife's condition was not helped in that she was a diabetic and having excess sugar in your system feeds the cancer many suggest. Bare in mind in regards to the standardized treatments- no two people are alike either, what works for one may not for another, and vise-versa and she may have a complete clinical response. All the best to you and mom.
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Dova,
DD AC is great stuff! I am having my 4th treatment next Tuesday. Then Taxol x 12 after that. TN responds very well to chemotherapy and I hope that is the case for all of us TN ladies going through this. I am doing very well on chemo and have few notable side effects. Your mom is not working so that will be helpful. I took disability to manage this better and my MO is calling me Superwoman! Nice to have good feedback from my MO. I follow all of the rules and do everything that they recommend. The chemo boards on this site are VERY helpful! Look at them for advice and help. PM me if you want the short version.
Hugs and white light,
Anne
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Hi all, my follow up appointments went well. The Dr's are amazed at my recovery. My orthopedic surgeon can't believe how strong willed i am and my attitude. My medications are being adjusted. Will now be taking 600mg of gabepentine 3x's a day plus gradually stepping down on oxycodone, plus tramadol has been added. Dr and I are bother hoping the phantom pain goes away. I believe it will in time. See orthopedic again in 10 weeks. Saw plastic surgeon too. Got stitches from amputation removed and also had my ball and chain removed ( drain) yahoo. See plastic surgeon again in 4 weeks.
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Sounds like you are doing very well, DiV! I am taking 300mg of gabapentin once a day (in the evening) for my hot flashes. They haven't gone away completely, but it has helped. The other good news about it is that it helps you sleep
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DIV...So good to hear from you. Happy that you are doing so well. Your positive attitude and inner strength are amazing. ❤️
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Hi all
Thank you very much Peter for the info, I will definitely ask her MO to do the testing. He is a person of very few words, when I asked about a trail (Xeloda) he said he doesn't want to give her everything now and not have anything left for it if it comes back. So he didn't want to put her in it. So my guess his answer will be no than i can look into just paying for it.
DiV glad to here you are doing so good that's amazing. Keep us posted on your recovery, take good care and rest
Love you all
Cristina
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Diagnosed less than two weeks ago with triple neg, stage 1, grade 2, 1.9 cm, doesn't appear to be in lymph nodes. I haven't been able to allow myself to add my stats to my signature in this forum yet, but I'm Julie, 57, healthier than probably anyone I know, no smoking, vegetarian, exercise, blah, blah, blah.
Many, many hours I'm upbeat, positive, and even open to making new, important changes in my life like letting caring people into my life. Then today, it's more of a downer. Whoever wrote "knowledge is power" did not account for the fact that knowledge can also be overwhelming, scary, and burdensome. I'm a college prof and researcher so I know all about the importance of knowledge, but today, it's getting to me. I've now learned that triple neg means so many things that "basic" breast cancer doesn't. So now if I tell someone that I have breast cancer, I want to add, "AND it's triple negative so that's even damn worse!" I've read through many of your posts and they're so helpful--so thank you--but when I looked up the recommended, "Patricia Prijatel's Surviving Triple Negative Breast Cancer," and read Amazon's description, I almost lost it. I hear/read a lot of "and you can survive TN" and "a woman got remarried in her 50s" and "one ran a marathon." I did not think these were exception or big accomplishments, I thought all of these things were the norm. I've been on such a positive path and today is just a downer. I expect to do all three of those things if I choose (not ever getting remarried, though, so that's out). Why does it just seem like some hours only the bad filters in? I think I'll try to just live through those hours and move to the more positive hours. I just didn't realize until the last day that TN is overall more challenging, more risky, less fun, more prone to reoccurrence, ad na bunch of other crappy things we don't want. Sorry, venting today. I'll be fine in an hour, likely. I hope this is the place to add in the bummer posts along side the upbeat ones (my usual are upbeat, I promise).
Julie
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Julie...welcome to the club no woman wants to join‼️I found a lump in my breast October 15th, 2015. Made an appointment for a mammogram the next day. To keep myself stable and upbeat, I began a list of friends who were breast cancer survivors. They all had surgery, radiation and took a little pill. All 36 were perfectly fine. "I can do this too", I said on my way to the mammogram. But, before long, after the results, I sat down again, somewhat shell shocked, to make another list of women I knew with TNBC. Blank page‼️ To make matters worse, I had just heard of a new movie where a young woman dies from breast cancer. What type? You can guess on your own. During my treatment I became a Google addict, even waking up at night to pee and then searching for some promising info on TN. Not too much to be found, EXCEPT, there is approximately an 80% chance of no recurrence. Today, my lumpectomy, chemo and radiation are behind me. Most of my hair is back. I look and feel good. But, sorry to say I think about cancer EVERY day. Several times a day it will pop up in my thoughts. I try to be busy, happy, positive. Friends and family say I'm amazing. I truly believe I will die from this cancer and hope it won't be for a very long time. Just like I can't believe I got this monster, I can't really let myself believe it won't take me down. You will get many responses here from amazingly caring women. But, I think all will say that the easy part was getting the cancer out of their bodies. The mind is another story. I sincerely welcome you to our group and wish you exactly what I wish for all of us...never to have to deal with cancer again.
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*echoes everything that Cathytoo said*
The treatment is grueling, but do-able. The fear is overwhelming. {{{HUGS}}}
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Julie, Welcome! There are days we feel the heavy weight of TNBC, so do not apologize. Your bright days will return. Good news about TNBC, is that it is very responsive to chemo, more so than some cancers, so see where one door closes, another swings open. I know it is hard to believe, but one day cancer will not be the first thing you think of in the morning, or even at all that day. And yours was caught early, very good. Your good health going into treatment is a big plus, you will be able to fight hard and return to good health. You can do this! And we will help however we can.
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Peter, thank you for posting. I read thru your post again, I saw that your wife's cancer returned, how is she? I could not tell by your post if she had passed? Hoping to hear better news that that.
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Julie - I'm right there with you. Just diagnosed early March and my emotions are everywhere. I'm 41 with four daughters and scared that I'm going to keep hearing more bad news from the doctors. Had a PET scan Sunday and lost it after I was done. I've never been an emotional person, so I don't know what to do with myself. I'm a nurse and love what I do and hearing from my oncologist that I can't work for probably a year was stunning. I'm reading every reputable study and trying to get information so that I can make the most informed decisions about my care. I find if I concentrate on that and approach this as analytically as possible, then I can keep my emotions under control. This will be the toughest week so far. My surgery is Tuesday and I will find out the pathology and PET scan results. Hoping for once that I hear good news - no node involvement, no mets, tumor is smaller than what the MRI states, etc. I never thought I would be looking for good news with cancer.
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Good luck with your surgery, Brneyegrl, and welcome to you and Julie.
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Hi all! Just wanted to take a minute to share that over the weekend we celebrated my wife Kathy's 4 year cancer-versary. I am pleased to say we are BOTH in a far, far better place than we were 4 years ago at this time...ESPECIALLY KATHY. A lot of great things have happened in that 4 years...including our becoming first time grandparents a couple of weeks ago. For all of you who are newly diagnosed, know that there are many on this thread who were just as scared, uncertain and anxious as you and your families are now. But more important to know is that fact that this beast CAN be defeated and you WILL get there! Keep your heads up and keep up the fight. YOU WILL DEFEAT IT!
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Welcome to the newcomers and congrats to AL and Kathy!!
BE WELL wishes and
Hugs to all here!
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Al, Such great news celebrating 4 wonderful years! Please tell Kathy congratulations for me, for us. I am sure COCKER will chime in to as soon as she sees your post.
Brown, hang in there. Of course every person has their own situation, but I am sure as a nurse you have seen women in treatment return to work before one year....is it possible for you if you feel like you can? I for one, expect you to kick.....you know what!!....and feel better before a year. Hoping this it true, sending strong support your way.
(((Another)))!
(((ANNIE)))
LOVE TO ALL!
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Good news! PET scan results came back and the two known masses were they only things to light up. No mets. Surgery tomorrow. Left mastectomy with sentinel node biopsy and port placement.
Meadow I would work if I could during chemo, but I do floor nursing and the oncologist said I can't because of the chemo regimen I will be on. I plan on trying to get back sooner though. I love what I do and can't imagine being off that long.
Congrats Al and Kathy! Love hearing how people are beating this thing.
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Congratulations Al and kathy great news gives us all something to look forward to.
Brneyegrl6608 stay positive and strong. You got this.
Wecome Julie you came to the right place. Lots of support from alot of wonderful people!
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Hello
Al I am so pleased to hear your wife is doing good and brneyegrl that is such good news. Good luck with surgery and stay strong.
Julie I am so sorry you have to experience this and here we totally understand it. There is not a day or even an hour I don't think about my mom's diagnosis. Each time she coughs or has a head ache my mind is thinking at the worst possible things. You have to remember that in beating the beast it is important to have a good support and mentally ready as much as physically fit. Things will get easier.
I surprised mom with a trip to Vegas before she starts her chimo. She is very exited hoping to get our mind of cancer for at least couple of days.
Love to all
Cristina
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Dova that surprise trip was a great idea! Trip will definitely do all of you good. Have lits of fun and i hope you hit the jackpot!
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Hello everyone, I'm new to this group and I wish I would have found this site earlier. I was dx with triple negative in November. I guess I'm lucky because my tumor was small -- 8 mm and no lymph node involvement. I just finished chemo but like Julie, I think about my,dx every day. I try to be positive but also have times where I'm upset about a recurrence. I'm glad I found this group because reading the posts has been helpful.
Thanks everyone!!
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Michcali, Welcome! We are so glad you found us too. Congrats on finishing chemo...that is a great feeling, yes? And no lymph involvement, very good. You got this!
DiV, how are you getting along? Are you adjusting ok to learning how things are after your surgery? Please update on how you are.
Brownie, yes, floor nursing is so busy, and I can see your point about the time involved. Hugs.
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Welcome MichCali so glad you found us. Sorry for the circumstances that led you to find us. You will get lots of support here.
Meadow hi! How are you doing? Hope you are healing well. I'm doing good. Adjusting well. Today i tought myself how to make my bed. Needed video cuz I'm sure I looked funny...lol I have a waterbed that I had a mattress made for. I wedged a board under mattress and sat on it to get fitted sheet on. Did this on all four corners yahoo it worked! This will make everyone laugh too. To put my bra on i hook it on door handle and grab other end and hook it. Lol.....everyday thete is something i need to learn. I'm working on it. The phantom pain bothers me. Pain meds are messing up my bowels so i'm trying marijuana chocolates. They really help and i'd rather do that than to take the oxycodone.
I wish everyone a Happy Easter! Enjoy your weekend! Hugs to all!
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DiV,
So happy to hear that you're doing so well. It's amazing the things we can adjust to when we have to. Just wish you didn't have to!
Just wrote a long post about my surgery on the 2017 Diep flap reconstruction thread. Mostly just to say everything went well.
Been thinking a lot about you, DiV. I was worried about how you would do. I shouldn't have. You're such a fighter. You'll do just fine.
Warm and happy hugs.
Trish
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Hello everyone. I hope everyone is hanging in there.
For the newcomers - This forum has a wealth of information and lots of helpful members. When I first joined (October 2016), I felt like I was lost, but as others told me, there is light at the end of the tunnel. I will be starting radiation soon (did chemotherapy first, then had surgery second). It feels like my life / routine will be headed back to normal in the next month or two. Thank God!
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Hello Everyone and thanks for the warm welcome.
Trishyla--I am having a diep flap surgery scheduled for July. I'm going to try and find your post. I'm a little nervous
for it but it is the only reconstruction I can do. I had radiation and they don't recommend implants because of the radiation.
Any suggestions or tips you have would be greatly appreciated.
Happy holiday and enjoy the weekend everyone!!!
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MichCali,
Welcome! Not where any of us would choose to be, but such a great group of women for information and support.
Glad to hear you're planning Diep flap. It was my first choice for recon, and I'm so happy with the results, even this early on. I wanted something that felt like me, and it does.
The biggest advice i could give you is to build up your thigh muscles as much as possible. It sounds weird, but you won't be able to use your abdomen or arms, so you will use them as your "go to" muscles after your surgery. I think the reason I've done so well is that I do have strong thighs.
The other advice I would give you is to take it easy. Let others do everything for you for at least the first two weeks. Make sure you get good protein and hydrate, hydrate, hydrate! (Even before surgery)
Good luck!
Trish
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