I am a miracle?? Ok, I'll take that!!

I feel like I'm hijacking Jenn's thread, so apologies in advance. I have been stage IV for almost 7 years and my mo has never considered me terminal. She has never used that word nor treated me as if I was dying. I differ from Jenn in that I am ER+, HER2-. I have never had chemo, simply AI's. My lifestyle and diet are geared toward the healthy, but I am not compulsive about it and treat myself to whatever strikes my fancy, without guilt or worry. In a nutshell, I don't do anything to actively fight my MBC (other than take my letrozole every night).

Jenn is not the only person to go off of Herceptin and thrive. My point is, there is no clear reason to point to when trying to figure out why some of us are exceptional responders. We simply don't know.

So, while Jenn and I are exceptional responders, I think we don't yet know why.

Exbrnxgrl, Thank you for mentioning that there are others who have stopped taking Herpceptin and thrived. There have others who have reported such news on these boards. I was amazed by the first report, but some of those people have been off Herceptin for several years and have not had a recurrence. They, like Jen, have been told that if (not when, but if) they have a recurrences, they can go on back on Herceptin. I think it is wonderful and encouraging to learn about the exceptional responders like Jen. More research needs to be done on these exceptional responders to discover the secret of these outliers, but I do not question the results that we see nor the advice they receive.

WOOHOO again to you, Jen. You are a wonder and a miracle. I am celebrating for you.

Hugs and prayers from, Lynne

To be sure, it is the genetic makeup of these cancers that make them super-responsive to a particular drug, and I hope somebody is sequencing these cancers for clues to biomarkers that can be use for better diagnoses..

Exbrngirl, your grade 1 (ie slow-growing) cancer is no doubt part of it, but seven years is fantastic!!! Thanks for sharing that..

exbrnxgrl you are actively fighting your cancer by taking letrozole every night. I dont see how you can declare otherwise. Likewise the OP is also actively fighting cancer by regulary seeing a naturalist, though she does not want to give credit for reasons I would like to know.

Letrozole counts for something, and naturalists also count for something. Am I missing the point ?

Cure-ious,

Yes, I have always felt that the fact that it's such a lazy cancer, is an important part of my survival. I also know that it change in a heartbeat.

Niiankrah,

I have never identified with the whole warrior/fighter thing. My main point was to say that with respect to lifestyle, diet etc, I have changed virtually nothing and focus on enjoying the here and now. It's a fairly passive approach compared to what some patients do. However, I am not suggesting that my approach "works" . Lucky, I've just been very lucky

The main point of the OP, as I see it, is that her doctor thinks she has exceeded expectations as a stage 4, given that her treatment worked. She is a miracle because she is not expected to still be responding and doing this well. Compared to others similarly situated she is different, a one off. Others dont get this long a ride. Rare.

As far as her oncs are concerned it is all due to conventional treatment. But we have since learned that there is unconventional treatment as well, which is ongoing, which was not initially mentioned, and for which no credit is given. What is this treatment and why is no credit given? When treatment is integrated credit must be given to all parts.

There are people scouring these boards, looking for glimmers of hope like in this instance, right now and long after this thread tapers off. The OP will do us a lot of good by telling us about the unconventional treatment component.

Conventional treatment works. Integrated treatment also works.

Hi Jen,

Thank you for sharing this wonderful news and your story, I am so happy for you and your family.

I also believe that MBC patients with an outcome of NED after years of treatment, inspire and motivate researchers and oncologists to keep studying the biology of this disease and looking for new targeted treatments, that match the individual cases. This is what we should hope for sooner than later, new tailored treatments, and for this to happen we need more research within the field of MBC.

Take care all,

Meja

niiankrah1 I personally know someone who beat advanced cancer without any particular lifestyle change. Some refer to this person as a miracle. He calls himself just lucky...no lifestyle changes, no particular healthy food, no naturist doctors. And there are also these spontaneous remission cases, reported in literature, where cancer disapears without any apparent reason.

It's only a matter of turning on the immune system. Once it has the ability to recognize the defective cell, cancer doesn't stand a chance. This understanding is well accepted. What exactly turns on the immune system, that's the million dollar question. So maybe it's the medicine, or the medicine plus one or multiple lifestyle changes, or just the surgery, or an unrelated illness (this seems to be often the case for spontaneous remissions)... no one is able to tell now.

Also, the hormone positive and hormone negative cancers tend to behave differently, although exceptions exist. No one knows why, but hormone negative tends to recur quickly, while hormone positive can stay dormant for many years and then come back. So a stage four hormone positive patient will likely stay on the medication throughout life, but is not that clear the same is needed for a hormone negative patient. Especially since the medicine, Herceptin, it appears to be working by stimulating the immune system -that's why it is called immunotherapy. Of course, since Herceptin is relatively new, there aren't studies to confirm or infirm yet that lifelong treatment is needed.

I agree with Nian about asking Jenn what her Naturalist does for her....why is it a secret?

Why only mention the chemo etc? Yes lets celebrate with her but many here come every day to learn new information. Ive survived 6 years myself as stage 4 and am always excited to share. Where has the OP gone? Im sorry but makes me skeptical. ...if this were someone who did all natural treatment and proclaiming this miracle, many of you would be asking a zillion questions for sure😄

Btw...I never did chemo...no rads...no hormonals. Only surgery with alternatives

Jen has freely discussed her complimentary approach along with traditional medical treatment in dealing with mbc. There is no secret, and all her information can be found in her previous posts. I know she takes large breaks from posting on the boards as she is living her full life. There is no kind if concealing anything,

I feel it is semantics, that you consider the naturalist approach as treatment, yes, however, many of us consider that to be complimentary treatment in addition to conventional treamtent. Those of us who believe in the power or conventional treamtent don't want to give others the wrong impression that our belief is in alternative medicine alone. It is a splitting of hairs, not something I wish to engage in further.

It is okay if you do not wish to say anything about yourself, niian. In doing so, you are holding Jen to a different standard. Best wishes to you, though.

Niiankrah, I cannot tell how long you have had stage IV bc or if you do have MBC at all, nor do I know what treatments you have had, conventional medicine or alternative/naturalist medicine. For those of us who have been active in these stage IV boards for a number of years, we are used to searching older posts for information and do not find it necessary to ask someone to detail things all over again. For most of us mbc'ers, it is welcome news to read a post like Jen's. We want to celebrate her victory over this disease. It gives us hope, but we understand that right now exceptional responders are just that - exceptions. I have seen people on these boards who have been treated by naturalists as well as conventional medicine, have followed a vegan diet, have exercised regularly, and died within a year. I have also seen the other extreme, people who were treated only with conventional medicine, have not changed diet or lifestyle, and are still alive and being treated after ten years, some are NED some are not. There are too many factors in play to determine what will work best for each individual or for the entire group of mbc'ers. Someday, the "secrets" will be found, but what has worked for Jen will not work for all because our disease, genetic makeup, and who know what else are not identical.

I would really like to let Jen and others enjoy the good news without the conflict that is overtaking this thread. I hope you understand what I am saying.

If you search on Jen's name, you should find the information you are looking for but only if she chose to post it. You could send her a PM, of course, and she can choose to respond with whatever she wants, but please don't think that she has an obligation to answer all your questions. She has a right to privacy just like everyone else on these boards. I would like to see Jen post again in the future, and I don't want her to feel that reactions to her posts might make her uncomfortable.

Jen - So excited for you - may we all be there some day.   If your onc is recommending tykerb, I took for 3+ years with great success, and was always happy to know it had some impact on the blood brain barrier

Enjoy spring and this great news!!

Nel

The Metastatic Breast Cancer Project is working on just this question, what makes an exceptional responder exceptional. Easy to sign up at https://www.mbcproject.org.

In fact, everyone should sign. They look at the DNA of all metastatic breast cancer patients, get our medical records, and look for new connections to help find a cure.

I'm ok, exbrnxgrl. Coming up on 7 years and still knocking on lots of wood. As someone once told me, this is like having the radio on in the background of life. Sometimes it gets loud, other times it's quieter, but it's always on. Like Jenn, I disappear for periods of time just to go chill. Saw your posts on living life thread. Sounds like you've got lots going on. Good to keep the focus on just living. 😀

niaankrah, Jenn is probably not logging into the group. If you click on her name, you can see her posts and probably find out a lot that way.

This is a terrifying disease and we all want answers, so I get that fear.

When I was first diagnosed, I heard a talk by an oncologist who said how well a patient does depends on the biology of the tumor and the biology of the person with that tumor.

For me I've done CBD oil and turkey tail mushroom supplement, and still had a cancer flare up. Now I just do my best to eat healthy, get exercise, get support and work very hard to keep my stress level as low as possible (managing stress is a big challenge).

Researchers are working to unravel all this stuff, but because biology is different for us all, it's hard to tell what will and won't help.

Hugs. Susan