Calling all TNs
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Count me in, Meadow! Be right there with the others, sending out positive, healing vibes. Hope all goes well tomorrow.
Trish
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Meadow, - I'm with you, too! I planned to pm, but you posted and beat me to it. Wishing you a quick, easy, SUCCESSFUL procedure with a speedy recovery!
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Meadow: You'll need a really long pocket with me in there!
{{{BIG, GENTLE HUGS}}}0 -
Meadow...I'm squeezing in that pocket too‼️
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Meadow,
I am sending you...
for Divine protection and a quick recovery.
Hugs,
Gina
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Meadow I'm in your pocket too always! I'm so happy to hear the infection is gone. Praying for a speedy recovery for you. Your in my prayers.
I would love to mention all of you but the list is soooo long. Thank you all for the support and prayers. I got home from the hospital yesterday. Having a hard time with heart rate jumping up. Cardiac doctor at hospital thinks the jump in heart rate is pain related. My pain meds wear off before next dose is due so I in pain for 1/2-1 hr before next dose and thats when heart rate goes up to 140+. Going to call my Orthopedic surgeon today and let him know that even at rest heart rate is 110-120. Yesterday (1st day home) was a rough day for pain. I couldn't find any way to be comfortable. Finally put a bunch of pillows in corner of twin bed and slept sitting up. The Phantom pain is it feels like my arm is still there. Sometimes it feels like I have a cut on my finger, pain in elbow joint from arthritis, sometimes feels like it fell asleep and I can always tell where the arm is like resting on my belly. It's weird but I'll take that over pain some amputees have.
You are all in my prayers and thoughts. Love you all and keep fighting. Hugs Diane
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hi Div, you are an incredibly strong and positive person. I wish you the smoothest possible recovery from your op, and adjusting to the changes.
Meadow - pop me in too please. I'm glad to hear that the infection has gone, and I'm hoping for smooth sailing from here for you. It's about time
Annie - sending Love to you and your family x
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Diane,
So glad you're home and doing well. I've been worried about you. Strange to be so connected to people we've never met, and who we might not even recognize if we met them on the street, but we are.
Be kind to yourself as you learn to adapt to your new body. I wish you all the best for a speedy, complete recovery.
Trish
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DiV, Meadow & Cocker--In all your pockets. What a trifecta of strong, positive, kind & brave ladies.
Love, Paula
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hello
I have been reading this blog for a while now. My Mom was diagnosed with TNBC in November 2016. She lives in Italy and I live in United States so I decided to bring her here for treatments. Long story short she had 4 round of CT (MUGA scan showed 40% so no A) than surgery one week ago. After chimo MUGA showed 67% so after surgery another 4 rounds of A. Anyone had something like this? Had A by itself after surgery?
Today we got the pathology report that showed close margins (don't know how close yet until we see the doc on Thursday) and 10 out of 24 lymph nodes involved. Will she need to have another surgery? Will she qualify for Xeloda with close margin?
I am devastated and trying to stay positive for mom. She keeps reading statistics about survival numbers and thinks she has like 33%. Everywhere I read it shows better chances. Tumor size still unknown somewhere between 3 and 5. Italian mammography showed 3 and Oncology here said around 5. What are her chances?
Thank you all for keeping a positivery attitude and giving others hope
Cristina
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Dova, firstly, Welcome! Hoping you find tons of support and information here. Second, you will be discouraged from reading on Google, so don't do it, or do it very little and don't let it discourage you. Most of the data there is decades old, and great strides have been made in TNBC therapy, and cancer treatment in general. Hoping others will respond soon, they know more than me! I learn so much here, and it feels like a big o' family of love. We are glad you and your mama found us.
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Thank you Trish, Mom, DiV (gentle hugs) Cathy my dear, gmmiph, Cassy, 6ftover, another my sweet friend, My pocket was full of love and support, heard some giggles in there too! My surgeon was able to close the pesky wound, plus he smoothed out some rough puckering from too much skin when the implant was removed. So I am hopeful for a good result. Hard to be optimistic when it was was failure the first time out, but hey gotta think positively, right? It is always a plus to try to do so. Thanks guys, your support gives me strength
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Add me to the pockets for Div, Cocker, and Meadow. Awesome ladies right there deserving of the very best.
Cristina, I'm pretty sure things are better than your mom is thinking/reading right now. But to help you out, I want to make sure I understand. So they think her TNBC tumor originally was between 3 and 5 cm. Then she had CT chemo before surgery (neoadjuvant chemo), followed by a lumpectomy which removed all of the cancer but just with close margins, and indicating that 10 lymph nodes had cancer? And now they are recommending that she continue more chemo with the Adriamycin because her heart is now looking to be strong enough, so they want to complete all of the ACT standard of care chemo. I think that makes sense if her heart is strong enough. (Most of us would have had the Adriamycin at the same time as the Cytoxan because that's most common, but if she wasn't able to have the Adriamycin earlier but can have it now, that seems like a logical choice). My questions are, how big is the remaining tumor? And do the lymph nodes still show active cancer after surgery, or did the chemo kill off the cancer (sometimes they can tell that the nodes HAD cancer, but it is dead/gone by the time of surgery because the chemo was effective).
Like your mom, I had chemo first, and then there was some residual tumor at the time of surgery. They were able to tell me the new, reduced size of the tumor, plus they have a scale called RCB (residual cancer burden) that goes 0-3 that really helps to determine prognosis. My oncologist told me my RCB score, but you can google "MD Anderson Residual cancer burden calculator" to figure it out yourself. I think knowing that information will help understand her odds. But a few promising things to remember--she can still add the Adriamycin, and maybe even more treatment after that (perhaps Xeloda or something else, and/or radiation) all of which can really help her. And also that we are NOT statistics I love my statistics myself, but at the end of the day, they can't predict what will happen to us as individuals. There are always plenty of people beating the odds. Also, I bet your mom is a smart cookie and will be doing several things to help herself compared to the average woman in the statistics, such as getting top notch medical care, exercising, eating well especially low-fat, watching her vitamin D levels, keeping an eye on alcohol intake, getting enough sleep, etc. I like to believe that we can all help ourselves somewhat with these tools.
I hope her appointment on Thursday is very reassuring. I'm in your pocket as well!
Tulips
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Thank you Tulips for joining in my pocket. And thank you for the great response to Dova
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Tulips thank you very much you guys keep my hopes up so I can be a rock for my mom.
Mom had a mastectomy and we will know the size of the remaining tumor Thursday. What is concerning to me is PET/CT scan showed only 2 involved nodes and now we got hit with this terrible news of having 10. Doc said in the email that 10/24 nodes tested positive I am assuming they still have cancer cells. We will definitely ask him more on Thursday. Also I am afraid that having Adriamycin by itself maybe it will not be as effective. I do not think her 4TC cycles were doing much
Meadow hope your infection will stay away and Anne, DiV you give me so much inspiration. I try to stay positive for her but I did brake today. Agrrr Cancer suck
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Hi Cristina,
Yes, that must have been a big shock to learn more lymph nodes were affected. And it's going to feel like a long wait until Thursday. One thing I might suggest to pass the time--meditation. I'm not completely into things like that, but I found it really helpful during my most stressful times waiting for diagnosis information. If neither of you has meditation experience, there are wonderful apps that walk you through it (Headspace is one), or in the iTunes store there are guided meditations, especially ones for healing, that are so relaxing and take away a lot of stress. I really recommend that while you wait for more information.
So you have some good questions ready for Thursday. It is a good question to see if Adriamycin is most effective in combination with Cytoxan or if it's equally effective as a standalone drug. I am not aware that there are lifetime limits on Cytoxan like there are for Adriamycin, so maybe she could do AC if the combination is more powerful? (I may be having more Cytoxan soon as part of a clinical trial with a vaccine to help prevent recurrence, so I'm pretty sure my 4 doses that I had with ACT did not max out what I'm allowed to have). I would also want to know if they recommend radiation at this point, and if they'll recommend even further treatment (Xeloda or other). You might also ask if there are clinical trials that make sense at this point. Good luck.
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DiV - You 'sound' terrific! Keep keeping stronger and feel better and better each day!
YAY Meadow for finally getting that wound closed! Now you, too, heal up and get back to yourself, asap!
Dova, - Welcome to our group! I, too, had A given on its own. I was born with a heart murmur, but an echo before chemo allowed me to be given AC/T. However, my first dose of AC left me with a racing heart, high blood pressure and various other issues, so my onc opted to divide the A and C, then get dd T. I guess it's not unusual. Wishing your Mom all the best!
Hoping all my sweet friends here are doing well!
Hugs from NYC
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Meadow so happy to hear your wound has been taken care of and that the puckering was fixed. I too will be without a breast. I'm going to just get a prosthesis and be happy that I'm alive cause my real breast almost killed me. Still in your pocket and pray for a speedy recovery.
Everyone on this site is so kind and supportive. It's just so amazing to me how complete strangers I've never met show so much kindness. It truly makes you all feel like extended family to me. To all starting the process stay calm and positive. I try to stay happy and upbeat and forget about cancer. I think that helped me alot with my surgery. My doctors couldn't believe how quickly I recovered and was able to be released from the hospital so early. All of you have been and are such a great support system to me. It has helped me greatly.
I met one lady on here who lives 30 minutes from me and we have become good friends and have met in person. We communicate daily. She said I was a great support for her during her diagnosis. If anyone would like to be friends on Facebook send me a personal message and I'll give you my facebook name.
Another NYCG You have been through alot yourself and also stay upbeat. Do you live in New York City? If you do maybe we can meet sometime cause my niece is a PA in Manhattan. I visit her when I can. She came home to be with me during my surgery and just left tuesday.
Any news on Annie?
Love, hugs and prayers to all.
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Meadow, delayed jumping in your pocket in writing, but I hopped right in when I read this!! It is crowded in here! You have a ton of support from the Mighty TN's. Happy that you are moving forward now . . . .
Anne
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DiV, you are an amazing woman! That word is over used in English Language now unfortunately. I wish I could put your screen name in the Oxford Dictionary as an example of what it really, truly means. Not surprised your Doctors used it to describe you. They don't hand out compliments like that arbitrarily either. Thank you for continuing to post and inspire all of us. I will PM you for a Facebook link, it will be nice to keep each other company through this journey. I was happy to read that you made a new friend to see in person and visit with. We all need that while going through this. I too have made some new friends I see in person and speak with by phone. It is a nice SE of all of this!! And it also nice to get off BC topic for awhile and learn about each other. One new friend is joining me in yoga class this week, something to look forward to.
Wishing all the TN Warriors a great week ahead, I just put #AC DD away yesterday and with the help of steroids and Zofran feeling pretty good today. Will try to get as much done in the next few days before the inevitable slump period.
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Hi All,
DiV and Meadow, I'm so glad to hear that your surgeries went well. I hope the recovery is smooth for both of you.
Cocker, I did go to the South Island. It was absolutely stunning. I'm officially in love with NZ. I hope you next chemo goes better than your last and your downtime is minimal.
Welcome to the new people. Treatment isn't easy, but it is doable.
I've had what I think is bronchitis for the last 10 days. It's on the mend, so I believe that is all that it was. I have to say that lung mets crossed my mind more than once while I was hacking up a lung. Cancer has a way of playing with our minds. I really like the "two week rule". It's saved my sanity and from having to call my MO's office with symptoms many times. It's amazing how often we get some scary symptom that goes away on it's own in 14 days.
Wishing everyone a good day.
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Meadow...sorry we disturbed you‼️ The giggling in your pocket was just us having a little fun.😇 But, your pocket is getting VERY crowded. If there is a next time, I think you need to bring this pocket along with you.
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DIV...your strength and positivity leave me speechless‼️ Sending prayersevery day.
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Dova...welcome to our wonderful group. As you already have discovered, we are all here for each other. I don't have much to add to what others have told you about medical aspects. However, I strongly second the advice to stay away from Google. When I was first diagnosed, I was totally addicted to the point that if I woke up during the night, I would Google. It's hard to stay away because you think that eventually you will find a bit of positive information. Truth is that even though we share a common health issue...we are all different. I know a woman who had a 6cm tumor with many affected lymph nodes. EIGHT YEARS AGO she was told not to expect to live longer than a year‼️
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A Helluva Headache
Joe was moderately successful in his career, but as he got older, he was increasingly hampered by excruciatingly painful headaches. When his personal hygiene and love life began to suffer, he sought medical help.
After being referred from one specialist to another, he finally came across a doctor who solved the problem.
The doctor said, "I have good news, and I have bad news. The good news is that I can cure your headaches, the bad news is that it will require castration. You have a very rare condition which causes your testicles to press up against the base of your spine. The pressure creates one hell of a headache. The only way to relieve the pressure is to remove the testicles."
Joe was, of course, both shocked and depressed. He indeed wondered if he even had anything to live for after castration. Yet, he immediately decided he had no choice but to go under the knife; his headaches just had to cease. When he left the hospital his mind was at long last clear, but naturally he felt like he was missing an important part of himself. As he walked down the street, he felt like an entirely different person.
He walked past a men's clothing store and thought, "I'll buy a new suit. Maybe that will cheer me up!" He entered the shop and told the salesman, "I'd like a new suit." The salesman eyed him briefly and said, "Let's see...size 44 long." Joe laughed, "Yeah, that's right, how did you know?" "It's my job to know," said the salesman. Joe tried on the suit, and it fit perfectly. As Joe admired himself in the mirror, the salesman asked, "How about a new shirt?" Joe thought for a moment and then said, "Okay, sure." The salesman eyed Joe and said, "Let's see...34 sleeve, and... 16 neck." Joe was once again surprised, "That's exactly right. How did you know?" "It's my job to know," said the salesman, very matter of factly. Joe tried on the shirt, and it fit perfectly.
Joe was feeling great, when the salesman asked, "How about some new underwear?" Joe hesitated for a second and said, "Sure..." The salesman stepped back, eyed Joe's waist and said, "Let's see...size 36." Joe laughed, "No, I've worn size 34 since I was 18 years old." The salesman shook his head, "No, no, you can't wear a size 34. It would press your testicles up against the base of your spine and give you one hell of a headache!"😃 Laughter is the Best Medicine!
Hello to All!
Welcome to the Newbies!
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I wish I could meet all of you in person!
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Thank you loves, and simple, you make me happy.
Cathy, those pockets crack me up!
DiV, keep us posted on your progress
(((Annie)))
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DiV, - Yes, I am in NYC. It would be terrific if we could meet one day!
Maybe we could get some others here to join us, too!!Cathy, - great pocket!
Have a feel good day everyone!!
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Hello everyone. Just diagnosed and reeling a bit from the news. I am 41 years old and had core needle biopsy done on Monday. Wednesday pathology report came back as triple negative IDC. On US my tumor measures 1.9 x 0.8 cm. Seeing the surgeon tomorrow for consult and then oncologist and the rest of my "team" on Tuesday for treatment plan. I'm trying to get an idea of what questions to ask and to get an idea of what this triple negative status means for me. I have four daughters and haven't told them yet. Just trying to get a sense of what I'm dealing with before I talk to them
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Oh, I'm so sorry, Browneyed Girl!
We can all clearly remember being in your shoes and just hearing this information. It is so scary, but it gets so much better once you have a plan in place. Your team is moving very quickly to see you, so hopefully you will have a plan very soon.
One thing I wish I did right at the beginning was get my hands on a couple of great, reliable books, which give an overview of everything. One of those books is Dr. Susan Love's famous Breast Book, and the other is Patricia Prijatel's Surviving Triple Negative Breast Cancer. Instead, I hit the internet first, which still provided me with great information, but in a more scattered way. Anyway, just a thought.
I had so many questions at the outset, I don't think I can give you a short list of key questions! But I was happy that my doctor suggested a breast MRI at the outset. You might also want to ask if there are any good/appropriate clinical trials for you to participate in if they suggest straightforward Standard of Care chemo (nothing wrong with SOC, but trials may be appealing so you should know if you are eligible for any good ones). You may want to discuss the pros/cons of neoadjuvant vs. adjuvant chemo (neoadjuvant is when you have the chemo first before surgery; adjuvant is surgery first followed by chemo). Also the pros/cons of mastectomy vs. lumpectomy with radiation. (FYI, this is a complex topic, and survival statistics turn out extremely similar if you choose either type of surgery. There are some situations that require mastectomy (BRCA+, multi-focal tumors, very large tumor size relative to size of breast which would lead to poor cosmetic result with a lumpectomy, location right below the nipple, etc). But for those who have a choice, the survival is very similar and the most recent studies even show a slight advantage for lumpectomy/radiation, which surprises many women. But the results are similar enough that it makes sense to take your own personal preferences into account (things like: how will you tolerate the need for ongoing mammograms if you have a lumpectomy, how would you feel about the loss of sensation that comes with mastectomy, how will you feel about the surgical risks associated with the bigger mastectomy surgery, etc). In the end this is a very personal decision, and women end up very happy with both types of decision.
Anyway, mostly I want to assure you that the vast majority of women with TNBC survive, and while it is scary, you will get through the treatment and put it in the rearview mirror. I will also say that there is.a huge range of responses to chemo, with some people having a very difficult time and some sailing through with flying colors, but it seems to me that most are surprised that it is way more tolerable than anticipated. For myself, I never vomited once, and was able to keep up a great exercise routine and do basically everything normal, except I went to bed early and a few minor complaints. I had a 2.3 cm tumor, and was diagnosed at age 45. I am about to pass 2 years since diagnosis, and I feel great.
Good luck, and ask a lot of questions!
Tulips
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