Stage IV NED crew : lets support each other
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Boo, rats. We all wanted to be the outliers who stayed NED. I, too, just learned that NED is gone. Liver mets have woken up. My TMs were also "chugging up" as you put it. A slow rise over the last year until my onc said let's change treatments even though your scans are not definitive. Good call because the next scan clearly showed the cancer active. How was the small spot on the omentum found? In other words, what prompted the laparoscopy? Although Her2 sounds like a bad thing, I will say that many of the long-term survivors seem to be Her2, and I think it is because the Her2 drugs work so well. Have you had a port before? It makes things so much easier. Get them to use it for blood draws, too, if you can.
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Shetland, what is your new treatment? Are you back on chemo? I'm sorry the rising TMs turned out to be liver mets awakening. I hope it won't be long before NED comes back to you given that progression was caught early.
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Shetland, sorry to hear you're back in it, too, with liver mets. Stupid cancer! Wishing you all the best on the next treatment and that you'll be back with us in short order.
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Thank you, Heidi and Bjsmiller. No chemo yet. I am on Faslodex + Afinitor now, hoping it will do a good job. If not, I am being offered liver radioembolization kind of as an alternative to starting chemo just yet, since the mets appear to be only in the liver, and I am otherwise healthy.
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Shetland - hope for all good outcomes Next plan - least invasive vs chemo For me it is quality over quantity
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Crossing fingers for Faslodex+Afinitor, Shetland. It's amazing, all the new protocols they have. These could let you avoid radioembolization or chemo for a good while.
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Thanks, Nel and Heidi. Yes, I figure if I get even a year on Fas + Af, there may be some drugs now in trial that will be approved by then. I got Ibrance a few weeks after it was approved, and I got this current combo just after a trial reported good results with it, so that sort of thing could happen again.
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Shetland Keep us posted we are all in this together
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I'm here again to ask a question for my sister. She had a PET Scan yesterday. In reviewing the results this morning it appeared clean which is great news! However, she said that the doctor said she can never be NED technically because the cancer had at some point been in her bones? Has anyone heard this or understand what he was saying?She's confused and so am I.
Thanks!
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DizzyDee, of course you two will have to ask the doctor to explain what he meant. I can say that NED means no evidence of disease, and a clear scan seems to fit that description. When that happens after treating for mets, my onc said, about 4% of the time the cancer does not return. So most of the time it is there somewhere, asleep or too small to see. We can't assume or know we have been cured, though it is possible. In any case, a clear scan is very good news.
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DizzyDee,
My oncologist says she is not comfortable using the term NED on any of her stage 4 patients. Instead when scans show no activity she classifies as no evidence of ACTIVE disease. As Shetland stated above the cells can be too small to detect. Your sisters results are great news!!
Mary Anne
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My precise oncologist has never defined my situation as NED per se. I'm the one who does that, using the term to mean "no evidence of active disease' because some of the mets are still visible in my lungs, but not growing or glowing.
My doctor made it clear at my mets diagnosis (more than five years ago) that micrometastases are doubtless lurking somewhere in my body--as they may have been decades ago when I was Stage I--and that treatment will be lifelong.
So, NED or NEAD--what's in an acronym?!
Tina
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It can be hard to get to Ned if you have bone mets because a lot of time the bone will still show evidence that cancer was there, it may be scarring or new growth, but there will be something there. Some people will use nead instead - no evidence of active disease
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I agree, NED or NEAD what's the diff? The truth is even healthy people may have cancer cells floating around which just haven't started to grow tumors. That's how I convince myself I am healthy. ;-) My oncologist also has never told me I am NED but the scan reports do say: no evidence of current or previous disease. It's the future that's a problem. But that goes for everyone.
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Thanks, everyone! I think she and I were both under the impression that remission was a term used for earlier stages of cancer and that NED was for Stage 4 - always with the understanding that it can return. I've learned a lot from your comments.
LAURIESH, I think that is perhaps what her doctor was trying to communicate.
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My oncologist explains it as a complete pathological response to chemotherapy. I don't think he'll use the term Cancer Free, but he likes NED.
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Hello all, I'm back!
Just to recap: following rising CA15-3, a laparoscopy found a tiny 2mm met on my peritoneum which was literally removed in total by the biopsy. The biopsy showed HER2+++, a real surprise as my original diagnosis and subsequent liver mets were 100% ER+. So my onc thinks I have been HER2+++ as well all along, just those cells indolent until now. My original pathology report did show HER2++ and thus stated "Borderline, treat as negative for HER2". So to be told I was HER2 positive as well as ER positive was a big shock, took some getting my head round. But explains why treatment with Letrozole, Tamoxifen and then Faslodex had not stopped my CA15-3 rising the past 18 months. All those hormonal treatments wouldn't have touched those pesky HER2 cells, but as my onc pointed out, had been successful in stopping any ER cell action. So that's a positive benefit.
A scan before I started chemo showed clear, the biopsy put me back into NED, yeay. Taxotere at a reduced dose was a precaution I chugged through as it was necessary in order to allow me have Herceptin and Perjeta from now on to smoke any further HER2 cells that might be lurking. I will also shortly be put back onto Faslodex injections every four weeks to keep my ER+ cells under control, as well as infusions of Herceptin and Perjeta every three weeks for ever, or until disease progression. I will have bi monthly onc appointments, an echocardiogram every three months and a scan every few months as well. It means it is going to be a pretty full on hospital schedule for me moving forwards. However, I am so happy to once again be NED that I'll take that. Keeping my fingers crossed for a good long run as NED as a result of all these treatments.
How is everyone else doing?
Best wishes to everyone. Boo.
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great news, boo! Glad they found those her2 cells and smoked them out. Hope the treatments are gentle on you.
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Hi everyone,
I am currently NEAD. My doc calls it remission. I'm on ibrance and femera. Been on them for a little over a year. I feel ok most of the time, but I'm always thinking about what will happen if ibrance quits working.
I've been doing so well that I decided to go to nursing school. I was accepted for the Fall semester this year. My doc says I can do whatever I want, but some people think I'm crazy. I can't decide...maybe I am.
Joellen
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Boo, welcome back! I knew you would be. Such good news and glad they found the HER+. I did H&P and really had no problems with it except a drippy nose, and those echos, but honestly, not too bad. I never had any heart issues, so hoping the same for you.
Joellen, congrats to you, too, and you go girl! You are not crazy and life is what you make it, so go for what you want! I think staying busy and continuing to live full tilt is what keeps me sane.
Hugs to all, Barbara
PS - forgot to report my 6 mo. CT/bone scans were all clear!
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Thanks Barbara!
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Good afternoon all,
Scan in April showed progression - again in my adrenal gland and 2 nearby nodes Had to change treatment from herceptin/tykerb. But I had a long run on that combo with NED, 3.5 years Now on Herceptin/xeloda Feeling good and hoping for another lengthy run
Put condo on the market and sold within 48 hours, preparing to leave/ retire from my job this summer. Moving to my home on Cape Cod. Just continuing to move forward
Nel
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Today is my 5 year anniversary pf being NED with a brain met. I was diagnosed after having a seizure 4 and a half years after a trip. neg. diagnosis and treatment. Had been great for all those years to have it just come back. My brain met made itself known just a few days before my son's wedding 5 years ago. I tried my best to not let it spoil things but I know people were worried. But here I still am after initial surgery and radiation. I just moved my store to a much larger location and signed a 2 year lease. I finally am able to plan a few years into the future after so long of not knowing . Good thoughts to everyone out there!
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Nel, Xeloda is powerful and I suspect it will give you another good lengthy run. Congrats on the condo sale and exciting move.
Embmom, that is awesome. Congratulations on 5 years and cheers to many, many more!
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This thread has been pretty quiet. Anyone got some good news to share or news of any kind? Just found out this week my BS will be retiring and I will see her for my last follow up next Thursday. I just love and trust her, and am so grateful for her surgical skill which I have no doubt was a huge part in getting me to NEAD. I will miss her.
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I've been NEAD for so long now (6 years). In December last my doc gave me a break from the Femara for a month and that was extended to this month. I saw him again last week and no change so I am free of treatment until or if something changes. Again he will check things in six months.
That makes me happy and I hope give others a boost.
Love n hugs all. Chrissy
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That is awesome that you get a chemo break. I've been NED for 7 years, but my onc doesn't want to "rock the boat". Every 3 weeks for Herceptin, every 6 months for Zometa, and daily Tamoxifen.
Congrats on being NED!
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Embmom great to hear!
I'm 2.5 years NED with only a solitary brain met. Next brain scan is in September. My neuro onc says if it's clear, he'll extend scans out to 1x/year instead of every 6 months. Fingers crossed.
I'm so happy to read that many of you are seeing long term NED!!
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All awesome news, Chrissy, Linda and Goodie! Your stories do give hope to everyone and are so good to hear!
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Chrissy, Linda and Goodie, three cheers to you.
Will have my 10 year mets and cancer anniversary next month.
This article was posted by badger on another thread. Some really inspiring stories.
UW-Madison study hopes to learn from group of medically extraordinary women who have survived advanced breast cancer
DAVID WAHLBERG, Wisconsin State Journal, July 23, 2017
Ellen Henning, a retired farmer from near Prairie du Sac, has been living with breast cancer for nearly 40 years, even though it has spread to other parts of her body.
The same is true for Peg Geisler, 81, of Madison, a retired UW-Madison administrator whom doctors also consider an "exceptional long-term survivor" of metastatic breast cancer.
Tammy Mocarski, too, has beaten the odds, surviving five recurrences of breast cancer. It was diagnosed in 2001, when the De Pere woman was 36 and had four young sons. To her surprise, she has lived to send them off to college.
The medically extraordinary women are part of a new study at UW-Madison to see if genetics, their immune systems, certain treatments or lifestyle factors can explain why they have lived so long with advanced breast cancer when most people die.
"There are so many variables," said Geisler, whose breast cancer, diagnosed in 1978, has come back four times. "Maybe this will help identify things that can be used, medicinally or environmentally, for other women."
Dr. Mark Burkard, a UW Health oncologist heading up the research, got the idea for the study from Geisler's remarkable story. After her cancer returned in 1982, she was told she had a 15 percent chance of living five years. But she has withstood recurrences in 2003, 2008 and 2013.
"Why do these people live so long with incurable cancer?" Burkard said. "If we can understand that, can we help other people live longer than they're living now?"
Roughly one-fifth of breast cancers spread to other parts of the body, he said. Among women with metastatic breast cancer, about 26 percent live five years and less than 10 percent live 10 years or more, he said.
The study is looking at women whose metastatic breast cancer originated at least 10 years ago if it is estrogen-receptor-positive, which responds best to treatment, or at least five years ago if it is estrogen-receptor-negative.
Fifteen patients at UW Health have enrolled, and Burkard has received $300,000 from the Avon Breast Cancer Crusade to find 35 more participants around the country.
By taking blood or saliva samples from the women and studying tissue samples from procedures, researchers will analyze the genetics of their bodies, their tumors and their immune systems to see if particular markers elucidate their endurance.
Questionnaires will seek information on lifestyle factors such as diet, exercise and social support.
If unique features are discovered, the findings could lead doctors to alter treatments, modify immune systems or recommend behavioral changes for other patients, Burkard said.
"We're hoping to use this information to help all our metastatic breast cancer patients be long-term survivors," he said.
For women in the study, the research is an opportunity to contribute something positive after decades of living in the shadow of cancer, not knowing if each new spot detected on a scan might be the one that could end their lives.
Nearly 40 years with cancer
Henning, 81, had a mastectomy and chemotherapy when her breast cancer was discovered in 1978. After recurrences, including a lump on her breastbone a few years ago, she had radiation and more chemo.
She wonders if the stoic attitude she has developed as a dairy and beef farmer might have contributed to her survival.
During her first years of treatment, "I'd get back from my chemo, change clothes and go out and take care of the cows," she said.
"When I get depressed, if somebody makes a bad remark to me, I always tell myself, 'Put a smile on your face, that will help.'"
Henning still helps her sons on the farm, rinsing the milk pails, filling the water tanks and making the noon meal.
UW doctors "are studying my blood to see what makes me tick," she tells her friends.
Geisler's breast cancer has returned in her spine, causing back and leg pain. But each time, after various treatments, her scans eventually became clear.
She cites her top-notch care, including 21 years of treatment by Dr. Paul Carbone, for whom UW's Carbone Cancer Center is named, as a possible contributor to her longevity.
She is also curious about genetics, hormonal responses to birth control and environmental factors. She grew up in Virginia and lived in New England before moving to Wisconsin.
Her social support has been strong, she said, and her emotional outlook understandably mixed.
"My attitude changes depending on the most recent diagnosis," she said. "You can get kicked back into fear and trembling very easily, and then you learn to roll with the punches."
Surviving with her sons
Mocarski, 53, has seen her cancer return in her lung, her ribs, her breastbone and her collar bone, mostly recently last year. But a scan a few months ago showed no tumors, and she isn't taking any cancer drugs, for the first time in 16 years.
"There's not a whole lot (of cancer drugs) I haven't been on," she said. "That's what I worry about the most, that I use up all of the combinations."
A former social worker who serves on the De Pere School Board, Mocarski learned she had breast cancer when her sons were ages 2 to 7.
She set short-term goals — hoping to see her youngest son make it to kindergarten, praying she'd survive until her oldest son could drive so her husband would have help if she was no longer around.
"I know I have today, and I'm pretty sure I have tomorrow, but I try not to look too far past that," she said.
Her oldest son is now 24 and in his third year of medical school at the Medical College of Wisconsin. The three others are in college, with two of them also planning to pursue health care careers.
Being in the UW-Madison study is one way Mocarski can reciprocate her good fortune, she said.
"I do question, after everything I've been through, why I am still here," she said.
"If they want to dissect me from head to toe — my blood, my DNA, my tissue samples — and it can help somebody else down the road, I am certainly more than willing to help."
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