My dear friends was diagnosed last month with Stage 4 BC (non-hormonal Her 2+) with mets to brain, and given at most 18 months to live. I would really appreciate any positive stories from survivors with the same exact diagnosis. I really hope I can find 2-3 women that would be willing to share their successful journey with my friend to help lift her spirits. Maybe some books or websites.
Thank you!
Quick Medical History Background : 18 months ago my friend was diagnosed with HER2 + cancer, not hormonal. It was treated with chemo and her Pet CT was clean as of December 2019 (doctors told her she was cancer-free). 5 weeks ago she learnt she had a metastatic process (3 tumors) in her brain. It was treated with Cyber Knife 2 weeks ago. She was told she only has 18 months to live...
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I am sorry to hear about your friend's dx. I read a very good book called "How not to die." It is written by a doctor who is dx with cancer and how he extends his life past expectations by changing his diet. Very good book. Take care.
Sorry to hear about your friend . I can suggest 2 books . The cancer whisper by Sophie Sabbage , she has lung cancer with Mets to brain , diagnosis 5 years ago and How to Starve Cancer ,Jane McLelland , a stage 4 survivor of 15 plus years .
Thank you so much for your suggestion. My friend read these 2 books.
Hi Anna,
I am sorry to hear about your friend's diagnosis. You are a really good friend to be reaching out like this looking for resources for her. I would second the recommendations for "How not to die" by Dr Michael Greger, and also Jane McLelland's "How to starve cancer" book.
Dr Greger was inspired by his grandmother's extraordinary recovery from a chronic illness (I can't remember exactly what was wrong with her). He has been able to help a number of patients over the years, which he mentions in his book. He has also authored the accompanying "How not to die" cookbook. He advocates a plant-based, vegan diet. He is the founder of NutritionFacts. org:
What I like about Dr Greger is that he seems to genuinely care about patients. He donates the entire proceeds from his books to charity, so you don't feel that you are just lining his pockets when you read his books. I also respect the fact that he is a medical doctor who has spent years learning not just about medicine, but nutrition. I have a number of his recipes that I plan to try.
Jane McLelland's book starts off by reading as an autobiography on how the author overcame metastatic cancer (she doesn't consider herself cured) by using off-label drugs and supplements to help her. She has been in remission for around 20 years or so. The book is quite hard going in places though. Towards the end, it is very technical and scientific, so it isn't a particularly easy read. Jane has a Facebook group, if your friend is interested in joining and learning more.
I would also recommend looking into getting some advice from an integrative doctor if your friend is willing to look at some alternative therapies to go alongside her conventional treatment.
I'm truly grateful for your reply. It was actually your posts from several months ago that made me join this community. You shared your experience about COC clinic and Dr Callebout. I have passed this information to my friend, Polina, and she has already met with COC clinic (2 weeks ago) and had a consultation with Dr. Callebout (5 days ago). We are now working on ordering Onconomics Plus RGCC test for Polina through Dr Callebout.
I've been in Jane McLelland group on FB for some time now (I joined a while go, when I was trying to help another friend of mine). Polina doesn't have FB account yet, but I asked her to open one and join. There is so much great information on that forum! Just a week ago there was a post from a woman with the same diagnosis as Polina's.
Polina has read so many books through her cancer journey, and I'm glad to see, based on the recommendations from this discussion, that she has covered these books already (including Dr. Greger's book+cookbook, and she is finishing up Jane's book now).
Polina's prognosis is very grim (18 months at best), so she told me that she only wants to hear/read about the patients, who had the same diagnosis and have survived. She needs to see the light at the end of this tunnel...
I'm trying so help her on her journey. Looking into Vit C IV and also just recently started reading about melatonin, and how amazing it is for cancer patients, especially for Stage 4 BC and prostate cancers. But I'm struggling to understand how come it's banned in UK, where Polina lives. I believe melatonin is part of Jane's protocol, right? Are you taking it?
Again, thank you so much for sharing your journey on this forum.
I am touched to learn that I have helped in some small way. Thank you! I'm glad Polina has contacted the COC clinic and is in touch with Dr Callebout. He is wonderful. I trust him and his secretary, Joanna. They are readily available if I have a question. Whenever I need a prescription refilled it is done very quickly.
The Facebook group sounds like it has really helped Polina. I find it handy. There are also some interesting files that have been uploaded that show what other cancer patients are taking for their particular cancer. Learning about what has helped others can be really helpful in moving forward. It can be so hard navigating through all of this, and dealing with a grim prognosis makes it even more urgent to get started quickly. I sincerely hope that Polina can start to see a difference to her outcome once she gets started on her new protocol. I would also try to stick with conventional treatment too if possible, as that can help kick back the disease, or at least manage it for the time being.
You're right that melatonin is not readily available in the UK. It can only be prescribed if a patient is having trouble sleeping. I got told off by the hospital pharmacist and my oncologist when I asked for some a while ago. It is not available over the counter or for off-label purposes. But I do take melatonin, as I order it from America. My husband is American, so I can get it shipped to our post box address over here really cheaply.
Please keep us informed on how Polina is doing. Maybe I'll see you on Jane's Facebook page!
Thank you so much, Sophie. I live in US, and I'm considering shipping melatonin to Polina. May I ask you which brand you are using and the dosage? I found a few brands, but they all seem to have unhealthy additives like artificial flavors, etc.
Also, I wanted to share an amazing cancer support group that I'm part of on FB. It's called Food for Living (facebook.com/groups/3592409... . The founder of this group, Teresa Scott, successfully won a battle against Stage 4 cancer (was also given only months to live). That was 4.5 years go! She shared her journey in this group (very detailed description of every single thing she did) and now she helps others with her advice (for free). She just made it her life mission to help others. She is also a successful holistic dentist in Texas. Because she is a doctor, she can order supplements from quality sources (Professional grade) with a discount, so she offered her discount with several suppliers to everyone in her group (again, she is not making any $$ on it). In this group I learned about Onconomics Plus RGCC test and about Jane McLelland's protocol. And Teresa also talks a lot about keeping your body alkaline, and how she achieved it.
I enjoyed our chat yesterday. After you told me about your last post I came back to read it, as I missed it yesterday. In answer to your question, I take 10mg of melatonin by Life Extention. I was advised to take 20-30mg, but the higher doses made me feel groggy by the morning. I might try to go back up to 20mg.
Thanks again for mentioning Teresa Scott’s experience. I’ll check her out later on when I get home from work. We need to hear success stories, rather than doom and gloom, and “there’s nothing more we can do” that we expect to hear at some point from our oncologists.
Thank you for the details on melatonin. I wonder how people take higher doses. According to this amazing video youtube.com/watch?v=Roh4lQX... people are easily taking over 100mg per day. Highly recommend for you and all the ladies on this forum to check it out. The doctor, who is sharing this information about melatonin, talks a lot about Stage 4 BC patients, and the amazing positive change that he is seeing with melatonin, how it improves quality of life, and significantly extends the prognosis.
I have heard of taking high dose melatonin, but I have hesitated to do so as I can't be taking it throughout the day while driving. That would invalidate my car insurance if anything happened. So that's why I take some at nighttime. I tried to click on the link, but couldn't open it. It was the same with the Facebook group you recommended. I just can't seem to get it right today!
It would be helpful to know the exact diagnosis as to what type of cancer she has. I believe my God is able to do all things. In 2005 I was diagnosed with her2 Neu positive breast cancer mets to the liver and was told I could not expect to live over a year. A new treatment had just come out, herceptin. Well hello! It's 2020 and I'm still here. I have been in chemo off and on the last 15 years but through prayer, good nutrition and medicine I have survived. Hope and blessings to your friend. 💟
It is encouraging to hear that you are doing so well after 15 years with metastatic breast cancer. I find that really inspiring. I'm about to enter my third year since my diagnosis, so I still have a long way to go before I can stand here and say the same.
Your example also shows how wrong doctors can be when they give us this diagnosis. How can they possibly know when someone will die? Granted, they can be very accurate when a person's death is imminent, such as in my mum's case when we were told she had less than a day left to live. But anything else is at best a guess. How can the doctors know how a patient will respond to a particular drug or treatment? Some do very well on chemotherapy, while others find that it is not effective for them.
There are so many options available now that were not around when my mum had cancer. So that is why I try to see this disease as living with cancer, rather than dying from it. While there is life there is hope for better drugs, and even a cure, in the future. AIDS was once considered incurable, but there have been cases of patients who have been cured, so I don't see why the same can't also be true for us.
Thank you so much for sharing your story! My friend was diagnosed 18 months ago with HER2 + cancer, not hormonal. It was treated with chemo and her Pet CT was clean as of December 2019 (doctors told her she was cancer-free). Early April she learnt she had a metastatic process (3 tumors) in her brain. It was treated with Cyber Knife 2 weeks ago, but her onco doctor told her she only has 18 months to live at best.
Are there any specific treatments (medical/herbal/vitamin) that you feel have helped you in your journey?
Many prayers and well wishes to your friend...Have u looked into clinical trials? That may be an option to look into vs just standard treatment...Prayers! 🙏🏻💕
Thank you so much for you kind words and suggestion. We haven't looked at clinical trials. I haven't asked my friend why she hasn't considered it, which I now will.
I have stage iv MBC. I have been treated with radiotherapy to the lining of my brain. I couldn't have cyber knife as there were too many little tumours.
My diagnosis was made in January 2019 - 15 months ago. My cancer is HER 2 positive. I stopped the anti oestrogen drug in January this year as I couldn't tolerate the side effects. I'd read that in stage IV it only adds an average of 3 months survival anyway!
I'm on kadcyla now as the 2 immunotherapy drugs didn't help. I don't get side effects and I'm feeling fine. My only health issues are non cancer related.
I started taking mushroom supplements again about a month ago. Turkey tail are, I understand, the best for cancer mushrooms build up your immune system. Watch videos by Paul stammets. Theres an excellent TED talk on YouTube.
Tell your friend she better not die in 18 months as that could knock my confidence in believing I've got several years to go before I 'pop my clogs' (English phrase).
Thank you so much for your positive outlook, humor, and for staying strong. Can you please share the name of the immunotherapy drugs that didn't work for you? My friends is looking into this right now.
She is taking a lot of different mushroom supplements, I believe. I'll check with her on Turkey Tail. Thank you for your suggestion.
My friend is a strong woman and she will not give up easily. She has 4 kids, with 3 of them under 5yo, so this is not the time for her to throw her hands in the air. She will give it her all to stay with her family.
Hi there, could you share your experiences with turkey tail supplements after these 2 years? How are you feeling? My sister is stage 4 BC and I already ordered turkey tail from Paul's website trying to give her a better chance in fighting this thing. Can you share also the dose you took of TT since this is a topic that goes all over the place from 2capsules per day to 12ish?
Hope to hear from you and I wish you the best of health!
Many have lived several years with brain mets. In addition to the supplemental and dietary approach mentioned here, has your friend seen a brain mets specialist? There have been new drugs approved in the US - Tucatinib or Tukysa for HER2 Positive MBC. The trials for this drug included patients with brain mets. Also Enhertu - for HER2 Positive MBC. The HER2 drugs can be effective. Please have your friend see a brain mets specialist.
Thank you so much for all the recommendations. 3 brain mets that my friend had have been removed with cyber knife procedure, so currently she doesn't have any brain mets. She did hear about Tucatinib, but she told me it's a very strong drug with lots of side effects. She has several onco doctors advising her, and the opinions are very different. Some recommend to start on Tucatinib right away, and others recommend Kadcyla only, and not do any brain chemo.
Not sure if my friend knows about Tukysa or Enhertu. I'll let her know. Thank you so much!!!
Tucatinib is Tukysa. Manufactured by Seattle Genetics. Enhertu is manufactured by Daiichi Sankyo. I'm not sure if Enhertu has any efficacy in brain mets. What is your friend currently on? Herceptin and Perjeta? The most effective drugs are the drugs for her subtype of HER2 Positive.
I'm so sorry to hear about your friend, that's very distressing and sad. I'm afraid I don't know of anyone with exactly the same dx or anything specific to mets to the brain but I can see others have suggested a few books and there's another one called Radical Remission by Kelly Turner which is a good read with some very inspiring stories. There is also of course the Joe Tippens story which you may have heard about, or your friend may have heard about Joe; I think some people find his story controversial but if I'd been given 18 months to live I'd be looking at everything. Here's the link in case you wanted to have a read.
mycancerstory.rocks/ . I do hope your friend finds some comfort and hope in the suggestions. Take care. Josie x
Thank you so much, Josie. I just shared your book recommendation with my friend. She already has it but hasn't read it yet. She just put it at the top of her list. Thanks! I've heard about joe Tippens. Interesting story. He also has a FB group, where people share their stories.
FDA just approved a new treatment for her2 positive. I read the entire article and it specifically mentioned brain Mets.
Here is an excerpt
Today, as part of Project Orbis, the U.S. Food and Drug Administration approved Tukysa (tucatinib) in combination with chemotherapy (trastuzumab and capecitabine) for the treatment of adult patients with advanced forms of HER2-positive breast cancer that can’t be removed with surgery, or has spread to other parts of the body, including the brain, and who have received one or more prior treatments.
Thank you for sahring, Stacy. Yes, my friends is aware of this new drug. For a number of reasons, her oncologist decided not to use it for her right now.
I was diagnosed as stage Iv early 2019. I'm still here and doing well. I had brain sparing radiotherapy in 2020 and Gamma knife therapy last year for 4 small brain mets. I've been on Kadcyla (chemo) every 3 weeks for nearly 2 years. I've been told that even if the cancer comes back I could have years in front of me. If it reoccurs in the brain and is caught early I'll have Gamma again. There are other chemo options for recurrence in the body.
In my first year of diagnosis I had hard chemo then immunotherapy. I also tried Turkey tail supplement. I don't know if that helped. I came off it as I was concerned it may interfere with the chemo.
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