De Novo Stage IV
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Yes, good article, Tinkerbell, thanks for sharing it.
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Just checking in to keep this thread alive. For the folks that have NEAD, just wondering if you made different changes to your lifestyle, meaning diet, exercise, supplement, fasting. Jane's protocol, etc. If you did make changes to your lifestyle what do you think has helped the most? I need a make-over with my lifestyle. Understandably I recognize there is a lot of "snake oil" on the internet. So just trying to see besides my I/L, fish oil, vitamin D and calcium, what more should I be doing, if anything? My inner circle gets on me about exercise, but in all honestly it's something that truly I loathe despite recognizing the benefits of the same.
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Tinkerbell, I’m not NEAD but I’ve been stable for years, in that time I’ve eaten very healthy and went to the gym daily but I’ve also had months of inactivity and fast food, so who knows. I will say that a quick 15-20 minute walk in the park or neighborhood is so great physically and mentally. It’s just fine to start small and easy. Also, I’ve done nothing but vitamin D, zinc and green tea.
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tinkerbell,
That is a good question. Here is my experience. Before dx, I lead a healthy life style. Lots of plant based nutrition, lean chicken or fish for protein. I didn't drink soda, eat chips or other things defined as junk food. I was active and never overweight. After my dx, I went whole hog with the health and nutrition thing. I juiced, took supplements and never cheated, ever! The greatest outcome of this? I was miserable. Going to restaurants or friends homes for meals was difficult. My younger dd, who lived with me at the time, tried to keep me on track but we ended up arguing, a lot! Remember, prior to my dx I had a healthy, not perfect lifestyle and I got bc. I should add that my younger sister had lived a pristine life style for well over 30 years. Not only in terms of nutrition but was conscious of lotions, deodorants etc., well before most people were even aware that there could be harm in them. At age 50 she was dx'ed with a uterine sarcoma and died about 6 months later. May I add that she was quite bitter about the fact that she'd taken such good care of her body only to be let down by it.
So for me these are two pieces that contributed to my current outlook. Personal experience with my sister tells me there are no guarantees but many people who follow my sisters path are shocked when they find out that their lifestyle did not protect/prevent illness. My own experience made me decide that I didn't want to spend time arguing with my daughter over food nor did I want to forgo the pleasures of dining out and socializing. Mainly, I didn't want to think about the implications of every bit of food and drink that passed my lips. So, I continue to eat well most of the time but if I want ice cream or a hamburger from time to time, I enjoy them without an iota of guilt.
I understand my attitude is not for everyone. Someone once told me that I was not being aggressive and pro-active in keeping my cancer from progressing. I do take my meds and follow my mo's advice but other than that I have decided to live my life as normally as possible. Again, I have beenfortunate and I know that this is not how everyone chooses to handle it. I was dx'ed over 9 years ago with a single bone met and have had no progression sine the bone met was radiated
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Illimae: Congrats on being stable for years. Appreciate your frankness about get off my butt and get moving, one step at a time. It's also refreshing to here you are not taking many supplements, basically eating healthy but also choosing not too as well. Several of my co workers purchased me an early Xmas gift, which remains in the box. They were trying to motivate me from a siting position. A mini Pedex for arms/legs at my desk. Maybe I'll drag this thing out after the holidays.
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Exbrnxgrl: Wow. Your story, especially about your sister, really makes me think about all of this, how much impact will all these changes make? Sounds like your living on your terms, and doing it "your way". After 9 years, which is amazing, however you started this journey being healthy whereas I basically ate what I felt like, not considering nutrition as may main goal, basically an impulse eater. Unfortunately I haven't deviated much but having a PIK3 mutation, it' fairly consistent the literature recommends a low sugar diet.. Do I need to jump on the bandwagon with cutting down on sugar, my usual eat what I feel like approach, or maybe a combination of both.
My mother passed away from uterine sarcoma, cruel and unforgiving disease. Sorry about your sister. My mother was a vegetarian and exercised, completely opposite of me. At the end I remember the MO said to me, it's truly about genetics, and this was before foundation 1, etc. I'm starting to buy into that approach wholeheartedly.
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I think its pretty difficult to link lifestyle changes to driving NEAD status. I know there is the Jane protocol and this and that, but I do wonder if that is a form of giving the illusion of control rather than actually having significant impact. Why beat yourself up over blocking what pathways and taking a ton of supplements every day and then when you progress feeling bad like you didn't do enough even at that point? We say cancer isn't our fault but then drive ourselves nuts to make amends for past (perceived) transgressions that probably had little to nothing to do with a rogue cell being copied incorrectly. If eating badly and lack of exercise were truly correlated to cancer you would see those folks on the 600 lb Life programs riddled with cancer and yet.. they aren't?
But, since here we are we've got to give our bodies a fighting chance, so at the very least I drink water, limit alcohol to maybe 2 or 3 drinks a month, and I've taken up intermittent fasting (18 hours on, although I want to try to move that to 20 with this upcoming Ibrance month) more as a way to manage snacking and calorie intake than anything else. I also take the fish oil, my D3 and Calcium, and the cancer drugs. I've always exercised so I do that most days - hour walk in the evenings and then cycling a few times a week and some resistance bands. Any meat and dairy in the house I shop for organic/least processed, same with most vegetables.
Make small changes that you can stick to - I make a few vegan dishes every month not because I'm vegan, but because they are tasty, have a lot of vegetables,and I like making cashew-based sauces and don't miss the dairy (also means pasta dishes are back on the menu). Swap soda for water, or commit to not having desert after dinner, etc. Then add something new another week. If you aren't keen on exercise then maybe focus on changing something else for now and work on exercise later when you've built up a head of steam on everything else.
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Tinkerbell, that gift looks like fun!
Sondra, years ago I saw an NIH (National institute of health) study that showed being overweight was actually somewhat of a protective factor for breast cancer in pre-menopausal women. I still got it at 41 but found that interesting in a society of blaming cancer on fatness among other things.
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Tinkerbell, thank you for pushing up this thread.
I am not NED. It’s already known here I went six years without treatment before being diagnosed. I must say I am an extremely picky eater. I am one who thinks pepper is spicy.
Anyway, I had worked out from the age of about 31 to about 58 in gyms and such. I can’t say I’ve ever been overweight, but I had reached my heaviest right before I started having the stomach symptoms and losing about 15 pounds rapidly. It was because I felt full after just a few bites. That’s when they found the cancer in my stomach.
I stopped working out at the gym but walk at least a mile or two every day. I have a dog who needs exercise, so she’s a good excuse to get me out there.
Anyway, I can say I eat very few fruits and vegetables now, eat more sugar and fried foods than ever. I know I shouldn’t, but something happened when I lost all the weight and was diagnosed. I’ve never gained the weight back. I stay within two to three pounds of where I ended up. My husband asks me every day what I weigh. If I lose a pound or two, he gets very worried.
Anyway, I ended up in the emergency room in the past month. I won’t go into details, but the doc thought that along with a severe allergic reaction to some wipes I was using that I had a UTI. I don’t think I did because I’ve had a number of them in my life. I know the instant I have one. He gave me an antibiotic. I decided to try not to get a yeast infection to go on a probiotic. I have been taking Floragen. In the last week, my appetite has picked up for the first time in a while. I feel I’ve been able to eat more. I’ve even gained back a few pounds. I’m wondering if the probiotic is helping. I have no idea, but I can’t think of any other reason.
Other than Ibrance and Letrozole, I take the vitamin D/calcium combo and now the probiotic and that’s it.
I think my reason for not caring what I eat is because of the inability to gain the weight back. If I started to gain more than I wanted, I would definitely eat better.
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Tinkerbell - again, thanks for bumping this thread.
I have to say, I don't worry too much about my diet. Before my dx, I had been trying to lose a few pounds. I raised an eyebrow when my PA said "your weight is good", because I am clearly a little above where I should be. Her response was, "you might need it." This was after the U/S but before the MRI and subsequent biopsy. It turned out she was right, because I lost about 20 lbs shortly after starting tx, despite trying to force myself to eat three good meals..
Anyway, my appetitie improved, but not much. So now, I eat what I can. If it's something I like, I can eat a fairly normal amount; other times it's just a few bites. We eat at home a lot more than we used to, so that's generally healthier. I don't drink often, but I'll still have an occasional beer/wine - after I discussed with my MO. I take the same supplements I took before - D3, B12, biotin, probiotic, and Omega-3...and calcium when I remeber. I need to improve in exercise, because it makes me feel better and gives me more energy and I think it makes your body work better, overall.
I don't think anything I did or didn't do caused my cancer. I was low risk and generally healthy - I'd tell the nurses taking my health history that I was very boring - ha. Anyway, I think it's unlikely that anything I eat or don't eat will have a profound effect on my longevity, but that's just my perspective. I'm not going to spend the next X number of years either denying myself or going overboard indulging myself either. Before dx I would have said, "life's too short", but I find myself reluctant to use that phrase anymore. It hits too close to home.
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Hi Tinkerbell, good question. I am currently NEAD and I think it's mainly a combination of luck and Herceptin. Luck, in that my cancer just happens to be responsive to these drugs.
Have I done any “complementary" things that may have helped? Yeah, a couple. I did intermittent fasting and a low calorie diet during chemo and that may have helped get a good response and keep side effects at bay. Dr. Valter Longo has done research on cancer and fasting, his finding was that it may help during chemo, I believe.
I was also exercising regularly at the time, I had already been doing so before diagnosis because I was in the process of getting rid of 80 pounds I had put on while going through menopause. I think the exercise definitely helped control side effects and keep my energy levels up. Exercise is the one thing that is recommended by conventional medicine to improve outcomes for cancer patients.
I have recently gone back to doing IF because unfortunately, I have gained back some weight since the COVID shutdowns. I also have high blood pressure and my cardiologist wants me to lose weight and to exercise for that reason as well. In addition, fat increases estrogen, my cancer is triple positive, and I think anything I can do to lose fat and build muscle certainly is not going to hurt me and may help lower my estrogen levels.
As far as supplements, I don't do anything as complex as the Jane protocol. I was always a believer in trying “natural" remedies and supplements, but when I was diagnosed, I decided I was going to trust medical science, lol, because cancer isn't like curing a sore throat or an ingrown toenail. 😂 My doctor wanted me to give up all the supplements I had been taking and just take calcium and D3, and I complied, mostly.
When I first started, I did try one of those mushroom immune supplements (old habits die hard) and I developed uncontrollable itching on my back. Both Herceptin and the mushrooms can cause this, so I ditched the mushrooms, easy choice. The itching went away after that. I still can't say for sure which thing caused it, but I decided to not try anything else until I was off Taxol, at least.
I also found out that megadoses of certain vitamins are associated with higher rates of cancer so I rule those out, too. I do take biotin/b6 for hair and nails but I look for brands that aren't giving me more than 100% of minimum daily requirement. I take magnesium to help with calcium absorption and sleep, melatonin for sleep (possibly has anti cancer effects, can't hurt, might help) and that's about it. I used to take CoQ10 and a couple of other things to try to control my blood pressure but it really did nothing in that regard. I had to go on medication anyway.
I eat low carb to control weight. I eat lots of vegetables, limit fruit to berries on a daily basis, with apples or melon a few times in a month. I focus on diet mainly to keep my weight down, but I do eliminate foods that I think are “estrogenic" like soy. I know there is conflicting evidence on soy and other things, but I do what feels right for me. Again, I don't think my diet got me to NEAD but I try to make what I feel are better choices, even if for just a marginal benefit. I am not fanatical about what passes through my lips, I just try to make the best choices I can every day, with occasional “cheats" now and then
I also think staying as healthy and strong as possible helps weather the treatments we have to deal with. And the stress.
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Tinkerbell, very good question, this q kept my mind busy for a long time, actually I don’t get NED or NEAD, if there is no evidence of disease or active disease so it has cured then, right?
I am not NED, in fact tumors in my spinal bones kept growing for at least 6 months after treatment started. There was one tumor size of around 1/5 centimeters and 2 very small when I started zometa letrozol and ibrance, six months later mri showed new tumors in different vertebrae and the older ones grew even the one that received radiation. Former MO called it “mix response” so I pushed to switch to xgeva, then those tumors in my spine being stable after 4 months of taking xgeva, well stable means no progression at the moment but no guarantee for how long. Well, the MO did cut off xgeva to prolia right after stable phase!!! I called it medical error, they called it study, without my consent he put me in his research to see the progression pace and wanted me to do pet scan every 2 months. I was so disappointed and scared about the outcome once I found out, am I only a case study or guinea pig or what for this so called MO??? It is problem of teaching hospitals, that I hate. anyway, my new MO will get me back to xgeva in about 2 months. That’s a relief. I wrote down this story because 1. “Peace of mind” is playing a big role in fighting with cancer, I see the difference in me, since I changed my MO, the anxiety in me has gone away. 2. Being in good hands is also a huge part, as Mae said “listen to your MO’s advice” I mean a good one for sure.
I had a healthy lifestyle and been active for almost my whole life, like SeeQ my medical history was boring nothing in there. and like Olma said I do believe natural healing as well, before cancer yes that philosophy worked, after diagnosis I use it as a side dish. I don’t believe some hard diets or fasting bring any benefits for me. I attended an mbc conference (before covid hit, of course) and many virtual conferences, they all emphasized balance in diet, more vegetables less red meat, more exercises.
I do believe a healthier lifestyle will help to rebuild damaged part of body with SEs, events etc and more importantly boost mental health. My opinion is to stay away from stress and anxiety in one’s way. I found my path with meditation and simply walking daily. I used to do yoga for more than a decade but I must admit it once I diagnosed with mbc I panicked enough to quit everything, then my back broke long story... when I started walking without walker I could only manage 5 minutes, because of leg numbness, back pain and fatigue and shortness of breath. I now walk 20-30 minutes almost every day and feel good about myself. I am happy to report that my leg numbness resolved, and fatigue is almost under control. I also do some physical therapy exercise, like mild version of yoga movements with focus on lower back and core muscle.
There is a thread “stage V MBC fitness” we share our daily activities and encourage each other. Come and join us.
Like other ladies, I take daily calcium and vitamin D.
Happy Monday everyone!
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KBL I am so sorry you've been in er, I hope you feel better by now and antibiotics didn't interfere with your medications. (((Hugs)))
Btw, I changed my screen name. I love this flower and it reminds me good memories.
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snowdrop,
NED or NEAD does not equal cure, particularly at stage IV. Essentially, your horse is out of the barn. He may not be able to be found at the moment but for the vast majority of us stage IV folks, he’ll appear at some time . I have been NEAD for 9 years but would never consider myself cured, just very fortunate. I wish it was true, but we’re not there yet
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Exbrnxgrl, I like the “horse theory” I hope my horse goes away and never comes back!
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Just want to thank everyone (Illimae, Exbrnxgrl, SondraF, KBL, SeeQ, Olma61 and Snowdrop). Its refreshing to hear a lot of similarities with lifestyle, (vitamins & exercise). No extremists wanted LOL. In the end it sounds like everyone is living there best life, having a balance. Yes, I can do better in all aspects, so incremental change, making informed choices, etc. I did consider Jane's protocol (COC), but not one of you seem to jump on that bandwagon. It confirms my inner voice, don't mess with what is working, if it's not working, more then likely it's not because I didn't eat more herbs or take supplements.
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Tinkerbell, There was a lovely, smart and very active woman on BCO a few years ago named Zarovka. Whenever I think of complimentary therapies, I think of her because she was an avid researcher and tried almost anything logical. She was the one that most of us thought would find a cure, if anyone could. She shared what she was doing and reported results. She unfortunately passed, devastating us all but also showing that cancer is sneaky, no matter what we do. It taught me that living healthy is great but you need luck too.
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I definitely consider myself one of the lucky ones, having lived so long without treatment. I wake up every day so appreciative.
Snow-drop, thank you. I feel much better.
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I have to say, if I wasn’t getting results from conventional treatments, I might be more willing to look at other methods - like Jane or the COC protocol. Those at least have some kind of basis in science. But, right now, I am in if it ain’t broke, don’t fix it mode.
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Olma, I agree with you. My scan results so far have been very good. I know it won't last forever but I'm not ready to do anything too complicated while things are going well.
I have a couple questions for you all.
How much Vitamin D do you take, if you take it? I was taking 1000 IU at the instruction of my MO for a while. My levels were a bit below normal. I think it’s related to the fact that I had a skin cancer scare with melanoma and have covered up in the sun with sunscreen, hats, and sleeves ever since. This past spring and summer I switched to sunscreen only, but no protective shirts and my D levels came up into the normal range, 39. Yay! But now they're back to 29 with fall and winter weather here in Ohio. (MO said I should hold off on extra D for a while while I’m being watched for possible parathyroid disease.)
I’d also like to get any tips for keeping neutrophils levels up. It’s a struggle for me. 😳
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Rosie, I take one vitamin D3 daily, it’s 5,000 IU.
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Mae, thanks for sharing Z story, I heard about her how much she was active and inspirational but never knew what happened.
Rosie, I take 2000 IU vitamin D3 daily, some days that I take good enough of sunshine I’ll don’t take it.
about low level of neutrophil count, it is ibrance main SE, I was told that I can’t do anything for leveling it up. Normally low level of ANC in blood (for someone who is not in active treatment) is related to lack of vitamin B12 can be found in eggs, milk, yogurt, beans, peas, corn, meat, vegetables etc
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Rosie, I take a calcium/D3 combo twice daily, so my total D3 is 1,000 IU. Snow-drop is correct. I think about the only thing to bring your neutrophils up would be a shot, but I don’t think too many do that.
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KBL~Hello!!! I was also denovo, spread to liver and bones. Lymph nodes out ,Felt lump in left breast 4 cm. Hurt like hell. Was watching what they called a cyst. Not so much. Went from stage 3 to four in two weeks. Major chemo and mastectomy and full liver resection has brought me to nead for going on four years, diagnosed 5 years ago January 22. 2020. I also feel lucky. I’ll take whatever time I can get with my horse out of the barn. Hopefully my cancer is what my oncologist calls “lazy” cancer and had gone dormant and or dead cells. That would be nice for us all. I want that cure for sure !!
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Hi, Micmel. So glad to see you here. I’m so sorry that you had pain from your lump. Love it when they say cancer doesn’t hurt. Ugh.
I hope you stay NEAD for many years to come. I know how hard it is to wake up every morning knowing we have this stupid disease.
I had to look up liver resection. I had never heard of that. You definitely have had to do way more than me to beat it back. I’m so glad you fought. It’s been so wonderful getting to know you.
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When I was first diagnosed, well-meaning friends and acquaintances assured me that my cancer could be cured with diet and exercise and sent me links to elaborate raw food protocols where you had to juice many kilos of fruits and veggies and drink smoothies every two hours. The protocols were impossible for me, working full time and living alone, to ever be able to implement, so I didn't try them. But I followed Zarovka's story and believed that if anyone could beat this disease, it would be her. She did everything I would ever have thought of, and more. But it wasn't enough. I did much less; still I survived for six years with my palliative, minimal regimen, which was all I could manage. I am doing my best in difficult circumstances. Every day I can get up and feel some hope is a win. One day I will not win. That is life. That is life for us all. We will not beat death. We can just keep winning until we lose, finally. And we can relate our experience here, to inspire others and give them some knowledge and hope.
I have a scan coming up in three days and I'm feeling philosophical. Wish me luck. : )
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NineTwelve, you are so right. I chose to keep living the exact way I've been living. I've been fortunate for it to be slow growing. I'm so appreciative.
Good luck with your scan. Please come back and let us know how you're doing.
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Thanks, KBL. I think the factor that helped me was that my cancer was grade 2 and not 3. It was just luck.
I expect my results early next week from my scan. I will be sure to come back and report. Hope everyone has a safe and sane (and sometimes silly) week!
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Thanks for your Vit D replies, Mae, KBL, and Snowdrop. On the neutrophils, yep, I guess no sure way to up the count. I’ve read some diet tips here and there, and even that exercise can help, so will keep trying to eat more of what Snowdrop mentioned and keep onwalking. Btw, Snowdrop, do you mind giving your previous screen name? I’d like to connect the old and new 😊
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ninetwelve, good luck to you.
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