Calling all TNs
Comments
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Cocker, I get tired of every single TNBC article starting out with saying things like "poor prognosis" and "agressive". I was so freaked out by those terms in the beginning that I couldn't even do any research on the internet. I actually asked my SIL to be my "official researcher" and feed me information in the beginning. Now, I just skim over all that stuff at the beginning of each article and see what the article really has to say. I agree that most articles describe very early research that may likely never amount to anything....or will become something well past the 5 year window for any of us currently diagnosed with TNBC.
Speaking of long-term survivors, I know a lady that is six years out now, almost seven. She used to be very active on bc.org. I sent her the link to this thread yesterday and asked her to pop in and post here. I "met" her through the Hope Connection at Vanderbilt which connects up cancer patients in treatment with others that are further out. I specifically asked to be connected up with someone with TNBC and the next day, I received a call from a six year survivor with TNBC. Wow, did that give me hope! We talk on the phone from time to time, and it's been a big help to me along the way.
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Speaking of early research and TNBC, I can't remember if anyone has posted on this thread the info on melatonin and TNBC. I started taking melatonin a couple weeks ago after I finished chemo because I would wake up in the middle of the night and was having trouble falling back to sleep. The melatonin is like magic for me....on nights I remember to take it, I sleep all night long. Shortly after starting it, I came across info like this.
http://www.sciencedaily.com/releases/2014/01/14012...
Nice to know, that the melatonin may be doing double duty for me. The article doesn't indicate what doses may be effective for TNBC.
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thats good info simple. am having trouble sleeping because of the continuous itchy sensation under my feet due to paclitaxel. i have been given anti allergens and something for nerve too but nothing seems to help much. instead of the sleeping tablet, i better take this then.
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jianchi: yes, he recently began vit d supplements. he says in case it induces nausea, i can wait till chemo is over and then start.
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There's a very long thread at the TNBC Foundation Forum called 'Survivors Needed' with 19 pages of posts by TN survivors. This is a link to the first page.
http://forum.tnbcfoundation.org/survivors-needed_topic8221.html
Reading it over the past year or so has calmed down a lot of my fears.
Hugs to all,
Carol
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I just saw the post about how soon after surgery did chemo start? I knew time was a factor but I just checked the calendar and I started 42 days after surgery! Wow! I was originally scheduled to start 31 days later but my reconstruction didn't go as planned and I went in for some revisions from necrotic skin and ended up with sepsis. Yep, sepsis! I ended up going back into to the hospital and that delayed chemo. It all seems so long ago but it all started only 6 months ago.
Also, a good place to find positive survivor stories-TNBC foundation Facebook group. There is a private group and a lot of survivors hang around on it. I love reading the 5 year plus ladies post!
Good luck to everyone with upcoming surgeries!
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went through the thread..thanks encyclias..
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Thank you everyone for your prayers, Mom is doing well.
LP- NH stood for nursing home.
Simple - that is great that they hooked you up with a survivor.
Meg - I understand your cancer wasn't invasive but I don't understand how it would hurt to test it for HER2? If they have found you to be ER- and PR- and haven't tested for HER2........how can they say your not TN? Any opinions on this ladies?
My biopsies have come back negative .....yea!.....but I'm guardedly optimistic and I hope the reason why will make you laugh.
I have a friend that died from BC. One of her hobbies was breeding birds. When I was first diagnosed in 2011, I had barn swallows come build a nest in the garage. I laughed because it reminded me of my friend. I told her thanks for the reminder, and that I wouldn't make the treatment mistakes she made (she didn't do chemo).
The next year they didn't come back, despite the fact I left the nest there.
2013 when I was diagnosed with the relapse.....yup they were back!
This week I have a sparrow who has decided to make the garage home. I didn't think anything of it when he got trapped in there the first time, I just opened the door and sent him on his way. The next morning, when I left for my biopsies......he was back sitting on the ledge chirping at me. (Shit!!!!) Now he's sitting on the kitchen door chirping at me. I've come to think of them as my early warning system.......and this little shit is making me nervous as hell, lol
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Hi - I began 6 weeks after my surgery because they originally told me I didn't need chemo because they had no idea what type of cancer I had due to the fact they couldn't get good readings after a mammo, ultrasound, mri and biopsy so it was all precautionary because I had cancer before on the opposite side of the breast which was not TNBC. This time it was TNBC. I guess every surgeon and oncologist is different on when they schedule you.
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My vitamin D level was 12 at diagnosis. I started supplements and after 8 months was at only 40, so I increased to 6,000 i.u. a day to try to get it into the 60s.
I started chemo on Day 29, but do remember my MO's office speaking to me with urgency when on Day 21 my port surgery hadn't been scheduled yet.
Regarding the article on chemo delays ... well the statistics at 60 days ... 54% risk of recurrence... let's stop for a moment and consider a few things. The article did not tell us what stage these women were in who delayed chemo ... they could also have been older and fragile, not recovered well from surgery, or had a serious reason why their chemo was delayed that may have contributed to their overall health and survival ... and it doesn't list other variables that could have made impacted their overall survival benefit - things that go into the pathology report in addition to additional therapies, targeted or otherwise.
I think with all of us that our medical teams had an intricate picture of what was going on with each of our cases, and that they started chemo within a timeframe that provided the maximum amount of benefit.
I would not worry too much ... if you can help it. I had actually come across a reference material this weekend online that mentioned chemo is usually started within 30-60 days. Remember too, that if your body is still healing from surgery, your body might not be able to absorb the full effect of the chemo if you started it too soon.
I think some thought to be paired with the article, which they did not mention, is how long did the patients wait between diagnosis and surgery? Could it be that the delay between diagnosis and surgery contributed to a higher risk of relapse, even with chemo regardless of when chemo was to start? Could that be where the risk hazard increased?
I felt the article was a bit general, and would rather have seen it contain the exact breakdown. What type of bc, what day did they start, tumor size, nodal involvement status, age, etc. For me, I would have preferred to see this extra key criteria disclosed in the article and broken down into a chart.
I will cut and paste some of the stats and see if it pulls up an official study that provides more detail. If I find anything additional about this article, I will post here.
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Simplelife Dr Mayer is OUTSTANDING. We live in Huntsville and traveled up to see her when my wife was first diagnosed. She wrote up a consult report for us and sent it to the local doctor, who followed her recommendations for chemo. She drove the bus on my wife's treatment even though treatment was administered at the local cancer center by the local Onc. If he wasn't willing to follow her recommendations we would have traveled to Nashville for treatment. You're in GREAT hands there. I posted earlier about a guy at my job who's wife's TNBC tumor was "the size of a deck of playing cards". It's 8 years later and she is doing just fine. Dr Mayer was her doctor as well.
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Ladies you apparently don't have exclusive claim to breast cancer. A male that I work with was just diagnosed with breast cancer. I don't know the details about his diagnosis (stage or type, etc). I had read that men could get it. I know it's rare ...but it happens. I guess it really does!
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Hi Everyone, I've located the actual medical journal that talks about that study - the Journal of Medical Oncology. It is 10 pages long and there is a graph on Page 3.
http://jco.ascopubs.org/content/early/2014/01/21/JCO.2013.49.7693.full.pdf
They term it TTC (Time to Chemo ) and in the opening paragraph: "For patients with breast cancer (BC) the optimal time to initiation of adjuvant chemo (TTC) after definitive surgery is unknown." In the conclusion paragraph (3rd paragraph on front page) it said that "our findings suggest that early initiation of chemotherapy should be granted for patients in these high risk groups." In the sentence before that, mention of specific groups was stage lll bc, TNBC, and trastuzumab-treated HER2-positive tumors - but read the sections in entirely to understand full context.
I'm printing the chart now from page 3.
From the chart, I see that there were 4927 people, 889 were TNBC or (15.2% of the total people in study). Of the TNBC population in this study, 321 started chemo in 30 or less days, 412 in 30-60 days and 156 started at greater than 61 days. The top of the chart says TTC Among Patients with Stage 1 to lll BC Diagnosed between 1997 and 2011 and Treated with Adjuvant Chemotherapy.
It's interesting to note that the study made up of people from as far back as 1997 ... because today's treatment standards may compensate better now, when starting treatment at greater than 30 days.
Sure is a lot of variables here! Apparently there are 2 more pages I should have printed of the charts - the survival page. I'm doing those now.
More .... on the 3rd chart is has TNBC patients
TTC less than or equal to 30 days: 5-year OS (overall survival) at .70 31-60 = .59 and greater or equal to 61 days = .67.
That was interesting that the longest TTC did not have the lowest OS percentage.
It talks about number of events, but I don't know what events it is talking about. Maybe the article describes it. Well, anyways, for the shortest TTC group (less than 30 days) they had a 131 events out of that 321 people, and 5-year relapse free survival was at .56.
Gosh - that seems a bit harsh. The middle TTC group had a 5-years RFS at .52 and the third TTC group (over 61 days) had .53 survival.
It tells me that there are so many different reference points ... overall survival, disease free survival, distant relapse free survival, etc. Further into the article it talks about the majority of studies already done did not show a detrimental effect in postponing chemotherapy within a specified time frames.
There is a lot of information, so read slowly and don't panic. Remember the title ... from 1997 to 2011. Even between last year to this year chemo regimens known as Preferred have changed in the NCCN Guidelines, and this information may not be as relevant with today's standard protocols. When in doubt, ask your Onc about any treatment delays and if it changes any prognosis factors.
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AlHusband: There is a guy on the forums who I've talked to before - his screen name is 1NippledBandit. He helps a lot of the men that are dx'd with breast cancer, in the Male Breast Cancer Forum on this site. There are quite a few men on it. Please get word out to the person you know who was just diagnosed, that this support site exists for him. The 1NippledBandit is really a remarkable guy and would be a great role model for him to follow.
Note: To find 1NippledBandit in the Search Option, you must have a capital N and capital B. Not sure why it is case specific, but if you type it in like that you will reach all the posts of his and can see all the forums dedicated to Men with Breast Cancer.
Brent (1NippledBandit) decided to pursue a nursing degree after his diagnosis. He is super funny in his posts, talking about how the woman who does the mammogram enjoys making it painful, and warning others about to have it done to not to let on, otherwise she will make it worse. LOL He has not wavered from his new beginning in life and is still taking classes towards his new calling! Everyone should take a moment to stop and introduce yourself and meet him!
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Kathy, I just wanted to say your story about your "early warning system" did make me laugh out loud when I read it. Do you want me to come shoo the birds away for you?
ALHusband, that was great hearing about your wife's experiences with Dr. Mayer and your friend's wife with the "deck of cards" tumor. VERY ENCOURAGING! Thanks for sharing all of that.
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AHusband- My friend that sat with me at each chemo has a male cousin that was diagnosed with breast cancer at 21 years old! He had a mastectomy (not sure if that's what they call it for men) and chemo and is doing well. He was chosen to be one of the Ford (motor company) BC survivors. He has been in national magazines and advertisements for Ford's support of BC. Hope your co-worker will seek out support.
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I had my surgery 1/29 and am meeting my MO 2/18. Now I'm so worried about this "30 day" thing. How long does it take for them to set you up for chemo? I mean, I may need a port, blood work, etc? I feel like the clock is ticking. I printed out the article to bring to the doctor.
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I'm surprised to see so many of you that have had adjuvant chemo. I was dx, had biopsy, mammo's, xrays, ct scan, PET scan, and port surgery within 2 wks. I started neoadjuvant chemo in the 3rd week. My BS orchestrated everything, I just had to show up.
How many of you had neoadjuvant chemo? I had surgery just about 4 weeks after my last tx. Rads were done about 6 weeks after surgery. I thought that neoadjuvant was now preferred for tnbc. Perhaps if I had it after surgery, i might not be fighting recurrence now?
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Went to a funeral today for a colleague who lost his battle with colon cancer. Just reminds me how much cancer sucks. He was only 52, less than a year older than me. His dad had died young (52) from colon cancer so they were closely monitoring him. He had gotten sick & they couldn't figure out what it was at first - colonoscopy (2 I think) came back negative. They finally diagnosed the cancer and found the tumor was growing outside of the colon. Had another conversation with someone who questions whether its a conspiracy that we haven't found the cure for cancer yet with all the $ the pharmaceuticals make - had never really thought about that......
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Lana - I'm very sorry about your friend.
Simple - I think you forgot a consonant. I don't want you to "shoo" birds.......I want you to shoot the suckers!
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Megomendy welcome to you. Sorry you have to be here but I don't want you to start worrying about the "30 day thing". We are all individuals and your doctors know exactly what has to be done for you and it will be done in plenty of time. Stats and studies cause needless worry. The same ones have been on here since I started and I have never taken any notice of them yet. You don't need extra concerns you have enough to deal with. Once your plan is in place you will feel better and your fighting spirit will take over. We have all felt the same so hang in there girl we are holding your hand.
Kathy well blow me down you have a "little shit" too. Geez I laughed when I read your post. That little bird just called by to say Hi and to tell you everything will be okay this time. Besides he didn't have the rest of his/her flock with him did he. Rest easy girl things will be just ok for you. I'm glad you are taking good care of our mum. Summer is coming to you and she will build up a good resistance again.
Slowloris - Neoadjuvant is chemotherapy and/or radiation therapy which is given before any other treatment such as surgery or other chemo agents. It's classed as a first line treatment.
AL Husband we have several men in our surgery that have been diagnosed with breast cancer. Hardly seems possible does it but the darn thing creeps in everywhere and anyone. Yes it is rare but they usually have a good prognosis with it though as it shows up very early in men. It's good to know there is supportive threat on here for them.
Have a good day ladies and try not to worry. Things have a way of working out.
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has anybody heard from fighter?
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I PM'ed fighter the other day and she is doing what she does best everyday...fighting. She said the chemo she is on is working since she can feel the nodes shrinking.
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slowloris - i don't think it really matters, you figure it's been growing for a while. logic says the quicker the better...regardless of statistics. I did chemo after surgery and i struggled for many months bc i will never know if i got a complete response. Doing chemo before tells me/us if that combination worked. I'm not sure either really matters....cancer doesn't really care what we do.
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I had surgery first as well. I didn't start chemo until 45 days after surgery. Like Jenjen said, it doesn't really seem to matter in what order treatment goes, cancer will do what it chooses. On one hand, it might have been nice to see if the chemo was shrinking the tumors, but on the other I was happy to have it removed and out of me! Thanks for updating us on Fighter!
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Kathy, you made me laugh out loud again this morning with your latest comment. I guess I did leave out the "t"....I've never shot a gun in my life, but hubby is a Viet Nam vet and a former policeman...he could do the job for you.
SloLoris, it seems like it's about half and half in terms of surgery or chemo first with TNBC these days based on what I see on my Sept chemo 2013 thread and what I see on other sites. In my mind, there are pros and cons of both. The biggest pro of doing neoadjuvant therapy is that if it doesn't work, they will add on another chemo treatment. I was given a choice at Vanderbilt as to which way I wanted to go.
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Meg, I think you are well-informed with the recent information and have all your facts with you. I would also press forward on trying to get started on treatment as soon as possible. In the paragraph below, it mentions how cancer cells can break away and if allowed to grow they can establish new tumors in other places in the body. So anything you can do to limit the opportunity for this is important.
My Onc and his team were not happy when at Day 21 port surgery had not been scheduled. Also, when the original doctor called to tell me that I had Grade 3 Breast Cancer, he was extremely aggressive with time frames. He told me "you need to find a doctor who can see you within 24 hours, not 4-5 days - this is Grade 3". At that time we didn't even know it was TNBC. Of course, it did take me 48 hours to get in to the office I wanted. The original doctor really demonstrated to me how serious and aggressive a Grade 3 bc diagnosis is.
To answer your question directly, it is usually pretty easy to get in to a port surgery, because of the short surgery that it is - however it could be a really busy time right now, so I don't see why there is any reason you can't go ahead and get your port surgery on the books, even if you are still waiting for something else. Since it's usually a twilight surgery, I'm not sure that you will need new labs ahead of time to have the port surgery done - and they will draw labs at time of your procedure. If you have recovered enough from your surgery and your most recent values are within 30 days of the port surgery, then you might not need any pre-labs.
They say you can have chemo immediately following port surgery, but I had it within 48 hours and my spot was tender and not really healed quite yet. I had a cream that I had my nurse prescribed, it was Lidocaine and I would apply that about 1 hour before the Onc appointment.
Here is more information for you - paragraph is from this link below:
http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-treating-chemotherapy
"When therapy is given to patients with no evidence of cancer after surgery, it is called adjuvant therapy. Surgery is used to remove all of the cancer that can be seen, but adjuvant therapy is used to kill any cancer cells that may have been left behind but can't be seen. Adjuvant therapy after breast-conserving surgery or mastectomy reduces the risk of breast cancer coming back. Radiation, chemo, targeted therapy, and hormone therapy can all be used as adjuvant treatments.
Even in the early stages of the disease, cancer cells may break away from the primary breast tumor and spread through the bloodstream. These cells don't cause symptoms, they don't show up on imaging tests, and they can't be felt during a physical exam. But if they are allowed to grow, they can establish new tumors in other places in the body. The goal of adjuvant chemo is to kill undetected cells that have traveled from the breast."
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I was diagnosed on the 6th of December. I saw surgeon, Onc, had port placement, muga, and pet scan then started chemo on the 6th of january. It was quite a whirlwind.
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News is reporting Shirley Temple has passed away at 85 due to natural causes. In reading highlights of her career, she survived breast cancer from 1972. She had a mastectomy and became one of the first prominent women to talk openly about it - her motivation was so that other women could have the surgery they needed without fear.
There is a book on Amazon by James Olson, that has quoted her as saying: "The doctor can make the incision; I'll make the decision." The text around it talks about being an advocate in your treatment plan. Very fitting for our forum!
The book by James S. Olson is called: Bathsheba's Breast: Women, Cancer and History
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Had surgery first. Started chemo 2 weeks later.
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