Ladies, did any of you considered going off treatments once you are NED (no evidence of disease) for five years or more for fear that treatments take a huge toll on the body?
To be clear: I am not recommending or promoting such a decision, merely curious if it was ever done.
Best to all,
Dully
I never considered it, but I’m not sure I was ever NED. Just stable.
Hi Dully,I took a few months treatment break this past summer to determine how quickly my mets might grow. This generally confirmed for me that mine tend to be fairly slow-growing.
Given my age (76) and the fact that I'd rather die from cancer than from its treatment, my approach is to evaluate the effect of any treatment on my quality of living. Some side effects are simply not worth the possible gain of a few months.
I'm sure if I was ever NEAD, I'd stop further treatment quite promptly. I think there are a few others in my age bracket on this site who would do the same.
Interesting question, thanks for asking,
Cindy
Thank for responding Hazelgreen.I'd like to say that 76 is not old, but I see your point.
May you offer dome more details please?
Are you Her2 negative? HR negative?
What treatments did you take, and how long has it been since you stopped?
I am 64, going on 65. Hormones are still very active. I am also triple positive, the aggressive type.
However, if I'll be lucky enough yo respond well to the immunotherapy for many years, it's a good prospect to have.
Thanks for taking the time.
Warm hugs
Hi EZSZ,
I have the most common version of breast cancer: ER+ HER2-. I don't know whether it is classified as "luminal A" these days as it is PR-. I only stopped treatment for three months. My cancer markers went up, and a CT scan showed some growth so I agreed to try a targeted drug combo (400mg Kisqali) last October. My CT scan last week showed some growth of liver mets along with soft tissue mets.
I'm doing bloodwork on Tuesday, and will speak to my onc on Wednesday. If my liver enzymes are still all within the normal range, I plan to ask my oncologist if I can try 600 mg Kisqali since that was the dosage which received FDA approval after the original clinical trial. I weigh 180 pounds, and my neutrophils remained fairly normal at 400 mg so perhaps I'm someone who needs the maximum dose.
Since you are HER2+, I'm glad you are on immunotherapy, and I too hope it will work for you for many years!
Warm hugs back to you,
Cindy
Well, Cindy, that's quite a convincing lesson. I am very appreciative.I am very hopeful that personalized treatment such as CAR-T, or immucura.com
Of course, we are all hoping that ErSO will come to life and be a success.
All the best, Cindy, sisterly love.
Hello to Ottawa woman,
That's quite the ad campaign for a cancer drug. It really is big business these days!
Hugs,
Cindy
Hi. I also hope for ErSo or car t but it’s far away yet. What is immaculate? Can you tell me more please. I am a member of ErSo group on Facebook. We all hope that it will be a cure.
Best,
Marina
Hi Marina. On my way to treatment, so a short reply.Immucura.com - available in Europe, and CAR-T are both personalized immunotherapy. I believe that the mRNA was developed for this purpose.
Thank you so much for your reply. Good luck with your treatment. What treatment are you on? When were you diagnosed? Hope for ErSo.
Diagnosed November 2020, recurrence, 2005 first encounter?)Triple positive, Herceptin perjeta tamoxifen.
Thank you for your reply. This treatment helps a lot of people. Especially your recursive was in 15 years. I have her2 - I was diagnosed with MBC after 9 years of primary in 2019. I am on my fifth line of treatment. I am very down. Good luck to you Marina
Hi Marina. Being down is not helpful. We all suffer in order to gain more happy time, not sad time.Do you still have options? Sometimes it's about finding the right treatment. No matter what - every day we are alive, we should try and enjoy whatever it is we enjoy; be it a meal, a book, a movie, a friend.
There are new lines of treatments all the time, and clinical trials.
I take a deep breath every day and tell myself: I'm a miracle! And I actually believe it.
It may not extend my life, but it sure does improves my daily mood.
Our lives are not about the end: death, our life is about every chapter, every day, every breath we take. Please focus on that.
We can live with sadness, but not with regrets, so do your share to end every day knowing that you have done your best to enjoy the time you have, little pleasures of life.
I don't recommend sex 🤣, but chocolate is good!
Thank you so so much. Your suggestions are very wise. My oncologist says that I do have options but I am so scared of IV chemo. I am on chemo pills now. I still hope for ErSO as a cure. When Bayer canceled the development, my anxiety became worse. The System’s Oncology is moving so slow and doesn’t guarantee that it will go to human trials. I try to do what you say but I am so sad. It’s so difficult to live with this disease. I was in remission for 9 years and enjoyed life. I can’t imagine that it came back to you in 15 years. After 5 I was sure that I am cured. What a mistake. Best,
Marina
Hi Hazel, I am 73 and live in US. I also many times thought of getting a break from all these poisonous treatment ( I have MBC on bone and in IBRANCE, faslodex and xgeva since 2019) but never had the courage to do that. I agree with you that we need quality rather than quantity! I paid $3200 for IBRANCE in January and after that , I have to pay $798 every 28 days! We all need a break!
Sima
We have socialized medicine in Canada so drugs are at no cost to the individual (everyone pays through our tax dollars - I much prefer this system!). Unfortunately, it is in big Pharmacare's financial interests not to determine who each drug best suits. This means, for example, your oncologist doesn't know whether you would be one of the people who would do equally well on faslodex without Ibrance. It might be worth your while to ask to try this for three or four months?? If I were you, in making my decision, I would think about how I feel during the week off Ibrance when my neutrophils are given time to return to normal.
Warm wishes & hugs,
Cindy
Hi Cindy I'm from Canada too. Currently - Ottawa.
I wouldn't dream of it. NED does not mean cured; it just means that nothing is big enough to be spotted. You still have zillions of cancer cells in your body
Indeed. However, as we age and our hormones are not as active - even less so eith hormones therapy - can a healthy diet be enough?
I am curious if it's science or fear of recurrence?
I don't have the answer or an opinion.
Unfortunately, I do not trust the medical professionals blindly.
Hi EZSZ. I have considered that option frequently. I believe that our bodies are made to cure everything and we just need to get them in balance. That doesn’t mean that I’m not afraid to stop the medication‘s,in fact, I haven’t stopped my medication‘s yet, but I’m still considering it. I do see a naturopathic doctor and she is more in tune with the body‘s ability to kill off cancer cells. But she still doesn’t recommend going off of the medication‘s. I’ve read a few books (How to starve cancer and Chris beat cancer) which detail many cases of stage 4 cancer being “cured” and living over 15 years with no recurrence. I’m sure the medical community would rebuke these cases, but I think that Big Pharma has a hold over their opinions. This is something I will continue to research.
Dear Shar313, your reply is interesting to me. Actually, if the body could have cured itself, I shouldn't have had a recurrence as I eat exactly what I need, as opposed to what I would like. My concerns are:
1. Damage caused by the treatments themselves
2. Loss of my freedom (treatment every 3 weeks)
So personal treatment, style ErSO, is a good option when available. Unfortunately, ErSO seems to be on hold, but have you heard of CAR-T?
statnews.com/2022/02/02/car...
May this is the future.
Hope, lots of hope.
Best, dully
Hi,ErSo is still active. There is a new analog now ErSo-DFP that scientists are working on now to get it ready for human trials. We still have hope
Best,
Marina
My mother was NED for 5 years and so she discontinued her treatments. Soon, the cancer returned, progressed and then she died.
That is so sad! Thank you so much for sharing, definitely important information to remember. My sincere condolences to you.
Thank you. She died in 1997 when she was 68. Now I am having the same thing, MBC and I am turning 68 this year. In the 25 years since she died, science has progressed immensely though…..
My oh my! I hear you. My sister fied at 40, 31 years ago. I had my first encounter with the disease 2005, so much has changed. There no no Herceptin/Perjeta etc.Well, I sure dovhope that you will live to be at least 80.
What type do you have?
I'm triple positive.
I never know for sure. I know I am estrogen positive and I think the rest are negative. All in all I am doing pretty well, so far. With Ibrance and Faslodex, plus Xgeva every 3 months. Initially diagnosed in 2012, had a double mastectomy with reconstruction. MBC duagnosed in 2019. Originally in some spot on my spine. Then, that seemed to disappear. Now a small lesion in my R hipbone. No pain. I dance every day for physical and mental fitness. It helps.
Yes, my organs have been clean so far. I have another scan on Feb 23. I hope a cure will be found in our lifetime.
Thank. you. Same to you.
Thank you.
NED and Scan frequency?
What happens after NED?
No longer in NED. 
