Is anyone in Stage 4, NOT done radiation and chemotherapy (oral or IV)? I just had surgery to remove two more tumors and it leaves me about 99% cancer free. I want to avoid the harsh treatments if possible. Has anyone had any success with B17, Artesiminin and iron, magnolia bark, sulphorafane, berberine, ubiquinol, C, CBD, mistletoe, immunotherapy, etc. I have a window where I can try some things before making a decision where there is no going back. Blessings to all for your efforts and support!
Avoiding the Harsh : Is anyone in Stage... - SHARE Metastatic ...
Avoiding the Harsh
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TruthisGreat
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Sorry, I have been taking the more traditional medicines. Do what's best for you. Wishing you all the best.
I believe in the traditional and then adding some non traditional.
I was diagnosed stage 4 after my mastectomy. I was told NOT to have chemo because Stage 4 cannot be cured. They didn’t want to hit the cancer hard. Doctor says it is about controlling the cancer. Read the book “Radical Remissions” by Kelly Turner. Watch the Sacred Plant series and look up CHRIS Werk. I listened to his series too. I have changed my diet to being vegan, I was walking everyday (I just went back to full time working) and walk 3 times a week now. Meditate or prayer.,My husband isn’t on board with me going the full holistic route. I am currently on Ibrance and Femera. I am looking into CBD for help with sleep and joint pain. Please keep me posted. I also looked into a supplement called immune assist from Aloha Medicinals, which has a variety of mushrooms. Check that out. My doctor said no to mushrooms while being on Ibrance. Also, I am drinking alkaline water, drinking ginger and green tea, take turmeric, greens, fish oil, calcium vitamin D. I am on my 8 cycle of Ibrance had my first scan. 2 months ago and have no evidence of disease. My side effects are minimal, tired and joint pain from the Femera. Good luck to you. Let me know how you do!! Mindset is key! Keep positive.
Have you tried glucosamine confronting woth MSm? It really takes away my joint pain. I am also doing calcium turmeric d3 astragalus.
theresact1,
I agree with your suggestions about the green tea, Turmeric, alkaline water greens, etc. I would also add to pass this by your Oncologist first.
I too am on Ibrance. I was taking all kinds of vitamins when all of a sudden I was told to stop the Calcium completely as it was interfering with my Ibrance and I actually had WAY too much Calcium in my body. So I did. My tumor markers are finally going down.
Lots of these supplements are good for us. We just have to make sure it doesn’t counteract with our traditional treatments.
I’m interested in the tart cherry juice addition as I feel I have lots of inflammation in me too. My ankles swelled when I was on Afinitor and off and on I get swelling from the Ibrance regime when I reach Days 20-21.
We need to be sensible with this whole additional supplement thing. Good luck!
Kats2
Hi there I am newly diagnosed. Ha e exactly the same diagnosis as you and on ibrance and Letrozole now. Just wanted to check with you and see how you are doing?
Thank you Julie
Hello Juliandrea, On high CBD now which will be cheaper than the cryoablation and have no viable tumor after last surgery. First sign of a tumor, I'm off to Mexico City for the cryo. Researched the ibrance when it was recommended and that was how I found this site. The comments totally convinced me that this was not my path. Still working full time, playing in a racquetball league, tennis, etc. Death is inevitable, I want a full and physically functional life until that happens. No more anastrazole - I thought I'd try it for a year, but it was only 7 months until I had physically limiting side affects. Not afraid of death but I will not poison my body - some how that just isn't 'holy' and 'kind' to me. I know none of this is easy - especially questioning authority. I just got a head start on that at a young age and happen to be really good at it. I wish you the best.
Hello Theresac1, In a high enough dose, CBD can be curative. Find your medicinal dose - anywhere from 150 to 1000 mgs per day of CBD - I needed a math lesson the way the syringes are labeled. I take it at bedtime in a gel cap. Threw out my anastrazole about 2 months ago - it was giving me severe muscle aches. I had to use my left hand to lift my leg into the car. The pain kept spreading until I knew it was the anti-estrogen. After I stopped taking it, it took about 4 weeks to fully resolve. Now my left leg gets into the car without assistance. After all my research after 3 years, CBD or the cryoablation with Jason Williams would be the only curative choices I'd make. I still do the palliative, and adjunctive therapies - but that's all they are. Killing cancer cells and turning on the immune system is key. Good luck!!
CBD sounds confusing. Where do you go to find correct information and dosage?
I'm lucky to live in a state where it is legal. The medical stores will help you calculate the dose you want. Start small and work up to as high as 1 gram a day. I'm at 140 mg and will hold it there for about 6 weeks and have my blood numbers tested. It will at least be an indicator to follow. I am not critical at the moment and can take my time. If I were near the end, I'd shoot up to 1gram a day. Not sure what the professionals would say about that. I have an MD, PhD who I see that is helping me. If you can get the CBD or grow the plants, I also have been given the contact info of an educator - SMJConsultingInfo@gmail.com . I have a license and can grow 15 plants and I make extracts in coconut oil. I give it to me and my dog daily in addition to the night dose. A dog, age 15, that had liver tumors took CDB and the tumor disappeared after 5 months. So many stories of success. Practitioners are cautious about making claims for legal reasons but there are plenty of stories. Amazing stuff. We must maintain our right to choice and protect this remarkable plant. It is nature and should belong to no one. Now that Monsanto and Bayer have merged, we need to get ourselves healed as fast as possible before it becomes a crime.
Hi! I was diagnosed at stage IV in early 2004 and have never had radiation or chemo. I have bone mets only and invasive lobular bc. It was E + P + and her2neu - , as lobular often is, when I was diagnosed. Since the primary was very invasive and clear margins were almost impossible, I had a lumpectomy. My loc general onc, an experienced older woman who communicates extremely well with patients and is our fierce advocate, and the bc specialist onc she referred me to for a second opinion, agreed that hormonal treatment was the way for me to go, with Femara, plus the bone drug Zometa. I had almost immediate good results and ended up getting almost five years from Femara. I was allergic to Zometa, so got just a half dose of it with a cortisone benedryl prep and 2 hour infusion time with extra fluids. After almost five years, I had a bit of progression, so had another lumpectomy (again, no clear margins) and switched to Faslodex. As soon as the FDA approved the larger, two injection dose of that, my CA 27-29 went into the normal range for the first time. When Xgeva was approve, I dropped Zometa and was put on Xgeva. In around 2010 or so when I attended BC conferences, oncs were talking alot about the intersection of inflammation and cancer. My primary care doc had just given me some suggestion for fighting inflammation and I was using 1 cup of tart cherry juice a day, the spice turmeric (curcumin/cumin), fish oil, and glucosamine/chondrotin. I had broken my ankle badly in a slip and fall on the ice and using just the cherry juice and turmeric made a huge difference in the amount of swelling in that ankle, within 2 or 3 days of starting those. I do use those supplements but not daily. I've been to the NBBC's ProjectLEAD, which is a week long intensive training in the science and medicine of bc for patient advocates and learned alot there. I've done some formal advocacy, and alot of informal advocacy. The CAM website that I trust the most is the Annie Appleseed Project. They are research oriented. When I ran into their founder, Anne Fonfa, at a conference, she confirmed those anti inflammatory supplements my pcp had suggested. Personally, I would absolutely not forego conventional treatment of the hormonal and/or her2neu targeted treatment. Side effects are generally not the horrible things we have heard in the past about chemotherapy and they are not chemotherapy. And the drugs for bone mets have been real miracle drugs and game changers for those of us with bone mets. Since these bone drugs, we don't generally die from just bone mets anymore.
Hi! I have had to complete dental work before I can start Zometa. I have been afraid of Zometa due to the rare side effects of ONJ. I had to have a tooth extracted for preventative measures prior to starting Zometa. I will most likely be cleared this month. Any advice over Xgeva vs. Zometa? What is NBBC? Thanks for the info!
I'd ask my onc about Zometa vs Xgeva. Zometa is the older drug of the two and is given by IV. Normal infusion time (for those not allergic) is about 20 minutes, but it is still more expensive for the cancer center to administer it than Xgeva, which is an injection. They work a bit differently but they have done alot to extend the lives of those of us with bone mets as besides strengthening our bones, they also seem to help bone mets heal. The risk of ONJ is probably alot less than the risk of fractures without these meds and fractures used to lead to death as people would become less mobile, more likely to be bed ridden and would develop pneumonia and die from that. I became alot less worried about ONJ after meeting two women who had it! I would not have guessed that either of them had cancer much less this side effect and they were both able to eat normally. One of them was treated by a specialized dental surgeon from U of Michigan dental school and was doing really well. I was on these drugs for over ten years without any signs of ONJ and I even had an extraction shortly before it became widely known that extractions should only happen after we can be off the med for 3 months. NBBC is National Breast Cancer Coalition. Glad you asked.
You nearly made me cry, stories of long term survivors is what give me hope and faith.thank you very much with all my heart. I was diagnosed with metastatic breast cancer to the bones last November and reading about long term survivors gives me some hope. X God bless you for sharing
Hi I was diagnosed with breast cancer to the bones in my spine last November I am on ibrance Arimidex to suppress oestrogen and xvega tummy injection monthly. What are you taking? Hope you are well x
PJBinMI I am also have lobular cancer mets to the bones, ER+,PR+ Her2-,
Lobular can be hard to find because it is strand or weblike, single cell deep, rather than the lumps we usually think about with bc, but it also tends to respond really well to hormonal treatment and be fairly non aggressive. Those of us with lobular are more likely to not be diagnosed until it is stage IV than those with other forms of bc, but there are positives about having it, too! My long term plan is to stay on hormonal treatment and eventually go on low dose estrogen to both treat the cancer and "reset" it so that we can re use the hormonals that have worked before and then eventually failed due to the cancer cells mutating. My impression, and I could be wrong, is that not all oncs like that approach, but my onc and I agree about this as a long term plan, at least the last time we talked about it.
So, PJB, I have heard about bones becoming brittle, but thought the Zometa or Xgeva are supposed to strengthen the bones?
They do, but they can also cause the bones to become like bones with osteoporosis, brittle on the outside and soft on the inside. Please keep in mind that I had been on these meds for over 10 years when I had this surgery! It did make the surgeon change plans and I was under anesthesia twice as long as expected. I have not had problems related to these changes in my bones, but I have been off the bone drugs since about a year after this surgery and I do expect to go back on Xgeva sometime, probably within the next six months, but not every month again. One of the things that makes treatment planning difficult with these meds is that they are still relatively new and there just isn't alot of data about long term effects. But they do extend our lives.....
I first got bc which was stage 2B and had a modified radical masectomy with just chemo. 15 yrs later I became stage 4 with mets to bones and lungs. My first oncologist treated me with 2 strong chemos and gave me until last September to live. I got a 2nd opinion and changed my treatment to Ibrance and Letrozole with Zometa infusions at first once a month now once ever 3 months. If you feel comfortable go with it but I am here because of modern medicine I believe and prayer. I have never had to have radiation. All the best to you.
Thank you, Partia. Did you have side affects from the first round of chemo, or did you have a normal 15 years of living? I certainly hope the Ibrance and Letrozole will work a very long time for you. It took 3 years to find a good group of oncologists and now I have hope they will not just try to sell me what their kickbacks offer. That feels so good finally! May you have another 15+!
I also believe I am here and doing well because of the ibrance. I had chemo and do t know if it helped or not. I am 2 years out on ibrance as I was diagnosed 2 years ago stage 4. I also feel the calcium d3 astragalus and glucosamine are also helping me. To me both is the answer.
There is so much in the studies right now that chemo and radiation spread breast cancer. I've been offered Ibrance and glad it is an option for me. Most of the responses here have been relatively positive. But usually, something only works for 2 years until the cancer mutates and then we have to use something else that is even more harsh. I'm looking for a high quality of life - or death. Some of the stats for chemo say it only extends our life by 2%. But if the quality is compromised so much, I don't think 2% is enough to do it. I think of it like smearing mud over a windshield. I really appreciate all the sharing and different perspectives. Cancer is very humbling and there are no good answers. Everything is a compromise. Glad your supplements are helping to offset the affects. Thank you.
What studies show that chemo and radiation "spread cancer?" The best studies are those that are double blind (meaning neither the patient nor the onc know which patients are on the experimental group and which are in the control group) and involve large numbers of patients, and are duplicatable. I would be very surprised if there are reliable studies that conclude that chemo in general and radiation in general spread cancer. There is way too much pseudo science out there.
TruthisGreat,
Stick with traditional treatment. Ask your Oncologist what supplements you can take that won’t interfere with what is prescribed for you.
Bite the bullet and go for the harsh. Kill the cancer cells as best as is advised. You won’t be sorry.
Take a whole-Food multivitamin, do some carrot juicing, eat nutritionally and exercise to keep your body strong for your upcoming fight. Also, stay as active as you can throughout treatment. Build up your immune system with good, healthy, organic food. Good luck! Kats2
Thank you Kats2. Sounds like you know of non-harsh cytotoxic methods that failed? Two of my oncologists have offered to monitor me closely to see if the non-harsh will work well enough. Glad you have had good experiences without side affects and feeling healthy and living long! Good for you! Thanks!
On another note - - - I work with several oncologists with a variety of specialties. The Naturopathic Oncologist has shared her experiences with oncologists who get cancer and go to her to avoid the harsh and skewed stats. They want nothing to do with radiation or drugs that erode the body. Once my dog dies, I won't need to live any more. She's 12 and healthy - so just need to hang in for her. She's a delight! I should easily make it w/o the harsh stuff. I've had a very normal and good quality of life except for mastectomies - one 2+ years ago, and one 3 weeks ago. Still trying to decide if the drugs / Ibrance and/or radiation is the way to go to maintain the quality of life I want with no pain or annoying side affects. Starting immunotherapy injections this month - no side affects there since there are no drugs involved. Thanks everyone for sharing your experiences!
TruthisGreat,
What type of immunotherapy injections are you getting? And who is administering them? Did you have to seek out someone other than your regular Oncologist? I’m interested in immunotherapy also.
Please give me a little info on this. Thanks a bunch!
Kats2
Dear Kats2,
Yes, this immunotherapy is not from Big Pharma in the traditional arena. The immunotherapy serum is made from your own urine so it is completely safe. They've told me it is most effective when the tumors are less than 2-3 centimeters. It worked terrific with another trial therapy I was doing earlier this year but doctor ran off to Mexico with that serum so he could make some serious money. Technically, I'm 99% cancer clear right now after surgery removing 2 tumors and it should work great! Chest tumors are gone and I have a very small - less than 1cm in my hip. But, I have a 40% chance that it will return in 3 years so must be very proactive.
If you are interested in this form of immunotherapy, I'd start by reading: The Woman Who Cured Cancer: The Story of Cancer Pioneer Virginia Livingston-Wheeler, M.D., and the Discovery of the Cancer-Causing MicrobeJul 15, 2014 by Edmond G. Addeo
Traditionally, after my surgery, radiation is recommended - 6 weeks of daily treatments. Unfortunately, it can be like gas on a fire and make the cancer spread more - read some of these posts... we just don't know enough. I'm thrilled that my radiation oncologist will work with me to monitor the immunotherapy affects. He agreed to keep seeing and helping me even if I don't do radiation. Usually the oncologists I've seen over the years don't want to work with me if I don't buy what they are selling. He's an angel! I still get to decide if I want to go with the radiation before its too late and not before we see how these other approaches will work.
The first run costs $2,500 and the serum needs to be updated about every 4-6 months because the cancer mutates. These follow up bottles are $1,000.
Another immunotherapy approach is with Mistletoe injections. I was doing it but will resume it soon. It is widely used in Germany and some here but it is hard to get. Also, no harsh side affects. 2 injections per week - approximately - I have gathered quite a bit on various protocols depending on status of the cancer. Would be happy to share that info if I had your email.
I do all the injections myself. You can get supplies from the Internet. One doctor gave me an Rx to buy 100 syringes at the drug store. They wanted to parse them out 8 at a time and charge me $360. I convinced them to follow the doctor's order and give me all 100 for $30.
Here is another valuable resource - Stage IV Cancer Treatments that you can download for free. Read every word and see if anything resonates with you. I wish I'd done this when I was originally diagnosed.
cancertutor.com/advsuppleme...
Scroll to the bottom and complete the request to download the ebook.
Get the Stage IV Cancer Treatments Ebook Signup to get the "Stage IV Cancer Treatments" Ebook delivered to your Email Inbox immediately.
Best of luck!!!
I’ve had both oral chemo and radiation. My doc doesn’t due what he calls “un-necessary surgery” on stage 4 patients. He says it takes so much energy from the body to do a surgery and he chooses to shrink the tumors with radiation and drugs. I am a big fan of Doterra Essential Oils to supplement the traditional medications. Also do a lot of green smoothies, yoga and meditation. I believe Attitude is Everything and a good combo of western/eastern medicine is a good thing. Also follow the Love of the Lord and have a strong Faith in whatever will Be will be.
I have accepted my new reality that nobody besides husband and this group truly understand. This group is such a great resource because we all “get it”. No “I’m not all better because I choose to “look great”, No, it is not “mouth sensitivity”-I have physical wounds in my mouth, No, I can’t go play in the snow all weekend because I look fine-I need naps and I CAN’T Fall because I like the ability to continue to walk. Just a few of my favorites confirming as much as outsiders try they just don’t quite get it 😂😂😂😂
I love them all just the same 💖
Thanks for sharing, Becky. Your faith will take you far.
What kind of oral chemo have you been on? For how long, and how much longer? Sounds like you have some bad side affects.
My surgery fell into that traditional category of unnecessary because I was not worth the financial investment since I was going to die anyway. I insisted and advocated that I wanted to tumor load off so my non-harsh therapies would work more effectively. I got the surgeon to take my case to the oncology board and they accepted me for surgery. One oncologist did a 'neener, neener' saying that just because I got the surgery didn't mean I would live any longer. With her, I had 1.1 more years to live. What a gal!
Another oncologist said I got it because I was 'lasting' so long compared to others. He shook his finger at me and said, "I don't understand anything about holistic, but whatever you are doing, keep doing it!"
I get a 'relatively' new start and today, am 99% cancer free. Now I have to decide on the next stages. My thinking is that with lots of cancer, chemo is like wiping mud over the windshield. Studies show it spreads the cancer. I was lucky to have tumors that were easily removed and not embedded into my chest. I have another window and need to choose wisely on treatments and time. Oral chemo might be a part of that but only the 30 day protocol. What I'm hearing from this group is that it's a choice of the least worst over the best worst. Cancer. What to do - it is wicked. I'm more about quality of life and don't mind dying as I have my own spiritual belief. I just don't want to go before my dog 
I've lived in the moment and mindfully and gone past my comfort boundaries all my life. Loved, learned, and traveled. Now I work long hours to keep my job and health insurance, and spend all my money on cancer. I'm thinking 4th dimension will be better.
Hello TruthisGreat,
I have not had the traditional harsh treatments that include chemotherapy, nor have I had the tumour in my breast removed. When I was originally diagnosed on 19th March of this year, I was told that the disease was early stage and that I would be having neo-adjuvant chemotherapy to shrink the tumour, then surgery, radiotherapy and hormone therapy (as the disease is oestrogen receptor-positive).
However, following further tests the doctors discovered that it had spread to my spine, so I was now going to have a different plan of action. The oncologist gave me the option of treating the disease aggressively with chemotherapy, or hormone therapy. I wasn't sure what would be best for me. I was ready to start chemotherapy (I even had scarves and hats picked out and I had been practising tying the scarves!). I asked what her advice would be. She recommended hormone therapy. I had my first Zoladex injection that same day right after our consultation. Then two weeks later right after my last period I started Letrozole. I also have Zometa infusions once every three months to strengthen my bones and I take Adcal D3 twice a day, again to strengthen my bones. I recently started taking Montmorency cherry capsules, and will soon be starting complementary therapies.
My last CT scan result showed that the tumour was shrinking and that my condition was stable, so I am hoping that if the tumour shrinks down even more that I can have it removed.
All the best,
Sophie x
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