I'm a year into the metastatic disease to the armpit. The initial disease was stage 2 5 years ago (Her2neg, Est&Prog positive). I refused any treatment but the disease returned in 2020. Cancer has spread to the lymph nodes in the armpit, to the entire breast, and to the nipple. I started 4 months ago off with Ibrance, + Faslodex. My scans showed at first progression to organs. I'm struggling with neutropenia and am now on a low strength of Ibrance (100mg). My last blood showed mild neutropenia. In the last month, I started to have severe pain and another infected lymph node was discovered in my armpit. That means the treatment does not help so much. 10 days ago I started a ketogenic diet according to the Dr. Nasha method, fasting for 16 hours with drinking hot water + lemon and lemon peel reduced to 50 grams of carbohydrates and about 100 grams of protein. The pains are almost gone, the lumps feel less powerful, I feel like I have more control over my body. Yes, there is weakness, fatigue, inconsistent sleep. So I want to know if it is permissible to use dietary supplements such as vitamin D tea macha green and mushrooms (what types) The question is whether these supplements do not interfere with biological treatment and even make it toxic? Thanks in advance for any information.
biology drugs not helping: I'm a year... - SHARE Metastatic ...
biology drugs not helping
Rona,
You need to discuss any type treatment or supplements with your oncologist. He/she will then do regular blood work and scans to see if it working. Best wishes and blessings, Hannah
Hi Rona,
I am sorry that you are having a miserable time! Although I am someone who approaches treatment cautiously, I believe that you do need to take something to stop your mets from growing further. It sounds like you discovered the hard way that it was not a good idea to decline all treatment in the beginning.
In my understanding, infected lymph nodes are the vehicle by which cancer travels to other organs. My guess is that the lymph node in your armpit was inevitable, and should not be seen as a sign that your treatment "does not help so much". Please continue until your oncologist suggests an alternative.
You seem to be happy with the ketogenic diet you have begun, and, of course, that is your right. Myself, I would be concerned about consequences such as "weakness, fatigue, inconsistent sleep" as I think your body needs strength to respond to your medication in its fight with cancer. The important thing, in my opinion, is to stay as healthy as possible through exercise, proper nutrition, sleep, and lots of water (to keep all your biological processes in order).
Please be good to yourself.
Warm wishes for your health,
Hugs,
Cindy
Thank you Cindy for your pleasant and caring answer. I warmly embrace your words.
No problem taking any of those. I take those and more and have for the past 4.6 years ago when stage 4 arrived. I have been on Ibrance and other orals and now on IV taxol, which I like soooo much better and hope I can stay on for a much longer time. As you know, each time they change our meds, it makes us totally crazy--well it does me! And my guess is your onco will have no idea no matter what facility you are using. BUT if they have a really good nutritionist ++ person, that is the contact to ask. I do get them to draw D levels every few months. My D has been decent but I would love it over 90 and mine has been between 55 and 70. Mushrooms are essential as far as I am concerned. And quite frankly if you like organic fresh mushroom, cooking them with onions and garlic create a great cancer fighter. If not, amazon has a number of organic companies to order various mushrooms in powder form or capsules. They tremendously assist in dealing with cancer.
Thank you so much for your reassuring answer. There are so many different opinions and it's scary. As for green MACHA tea I have heard that it greatly strengthens the immune system. Do you have an opinion about it when used with biologics?
I am personal fan of great matcha! I love it and have a cup every day. BUT, there is a great difference in taste in matcha. I order mine directly from Japan where the best matcha is made. They are very good about delivery and very responsive to emails. Company is Hibiki-an. They are more pricey than some others but no comparison in flavor, if that matters to you. All of there products are top notch.
Why is that tea beneficial? I'm not familiar with it.
this is good to hear, and do you take biology medicine as well? some conventional doctors think that green tea together with biology could be dangerous. this is why I check before I drink it.
Keep in mind, if you are in the states ( I can't speak for other countries) doctors know virtually nothing about nutrition and only have one class in all four years of med school concerning that. They are getting much better than when I started in 1998 but still lacking dramatically. I find it really hard to believe that green tea would hurt you. Now, I can't tolerate caffeine very well at all so I need to be really careful about the quality of tea I buy and when and how much I do drink. But a cup of matcha is every day no later than early afternoon.
You may want to talk to your onc or an integrated medicine doctor.
Hi Rona, I too am on a Ketogenic diet. Definitely Macha Tea that you can order on Amazon in a powder form. I use it for tea and in my smoothies. I also take the Sacred 7 Mushroom powder that you can get on Amazon that I sprinkle in my coffee , tea and on my dishes and salad. It’s tasteless but has the best of all powerfulMushrooms. I also take a D3 K2 supplement. Best on your journey !!
Yes, sacred 7 is excellent. I am a huge mushroom person. But, I also see an Chinese doc, 24 years now, since the beginning of my breast cancer. She does formulate a mushroom drink which I drink 4 oz. twice daily so I don't need much more but I love mushrooms, especially sautéed with onions and garlic in olive oil.
I would love to have taken a mushroom especially during the 7 day period of remission with the Ibrance
I wish your Chinese doctor was able to sell her concoction ! xo
Where do you live?
Scottsdale, Arizona! You?
I have traveled pretty extensive around the world. But, definitely a lot in the states. My current favorite spot is Sedona. I love the southwest and have always had an affinity for the mountains, hiking, etc. We stayed at Enchantment back in the fall of 2019 and I feel in love and am eager to get back. Although this time, I do not see myself hiking, I may not be as good at that as before. I still want to be there hugging a juniper tree in one of the vortex areas. What part of Arizona are you living in? Not sure how the underline happened!!
We live in Scottsdale Arizona, north east of Phoenix. I’ve been to Sedona many times ( about 2 hours away) and we stayed at the Enchantment resort to boot. My disappointment now with Sedona is they’re letting the place get over run by tourists …. Sniff
It's such an open space that I am surprised it has too many tourists. I was not particularly fascinated with "downtown " except for the incredible art gallery. but enchantment and mi amo are amazing and as you can just walk outback through the gate and go up to kachina, well it doesn't get much better than that. And yes, I know Scottsdale and of course we fly into Phenox and drive north. Last time we stayed in Scottsdale first night. I am just not so much a fan of the dessert. So we were at Enchantment about a week and while there we took a private tour up north near antelope canyon and that was spectacular as well. I must have taken 500 pics.s
Israel
Israel, not Arizona, sorry
Thanks so much, Adele
My oncologist does not want me taking any supplements with Ibrance and Letrozole. I was taking turmeric and she told me not to take that and definitely no mushroom supplements or green tea as she said they would interfere with the Ibrance. I have heard so many wonderful things about the immune boosting power of mushrooms and green tea and would love to use those things but am doing good so far and don't want to mess that up. The most I take is a multivitamin and a raw calcium/vitamin D supplement. Best wishes to you. I hope your ketogenic diet helps you along with your meds.
I am surprised she has you taking calcium. there are peer reviews on calcium intake and cancer.
She has not said I should not take calcium. I have refused Xgeva or Zometa and am taking raw calcium (made from plant sources) that includes Vitamin D, Vitamin K and magnesium as well as few other vitamins. So far it seems to be working. Last 2 scans were stable. I am surprised you are able to take the mushroom supplements and green tea as my oncologist definitely said no to those things, she said they would definitely interfere with Ibrance. I guess every doctor is different which is unfortunate for us. We don't know who to believe.
The raw form for plant is certainly good. It is just the calcium pills that has some bad scientific peer reviewed press.
True, I am also very afraid of taking supplements so as not to interfere with medications doing their thing. Yes there is a lot of lack of information in this area. If you do not know it is better not to take risks. The ketogenic food I consume has a great many minerals and vitamins. The green vegetables, broccoli and kale sprouts, the cruciferous vegetables have lots of vitamins and minerals. Vitamin D is abundant in fish, salmon and sardines, sardines have a lot of calcium that is well absorbed in the body with the vitamin D it contains. Broccoli sprouts have a lot of vitamin K that helps the body absorb vitamin D so I think you should get all the minerals and vitamins from food. Most importantly a clean and healthy diet.
I feel great with the ketogenic diet that includes 16 hours of fasting. From 8 pm to 12 noon. I only eat two meals. A meal containing 50 grams of sprouted carbs, cooked cruciferous vegetables, fresh salad of purple cabbage, onions, parsley, broccoli sprouts, kale sprouts, nuts, pecans or king or pumpkin or sunflower seeds, avocado, another meal with fish (100 grams) salmon, Sardines, and more and of course again all the toppings of salads and so on. Between meals almost every hour drink hot water filtered with lemon and lemon peels. It lowers appetite, cleanses the body. I am 10 days with this diet. The pain of cancer actually subsided dramatically compared to what I had felt before. I have a wonderful sense of control over the body and of hope. Before that, I started to have pain and it felt like the conventional drugs had stopped working. I recommend everyone to do this. It feels very healthy. It's true that I'm a little more tired so in that case, I'm exhausted to eat more greens. Do not give it up because it contains a lot of natural magnesium from food and it helps prevent muscle contractions.
By the way this is a Google translation from Hebrew so if there are words that do not fit there you will understand the reason. I live in Israel. Love you
Another thought:
From the MSK site:
"Palbociclib: The bioavailability of Palbociclib decreased following administration of green tea extract in a murine model (79). Clinical relevance has yet to be determined."
They are cautioning about taking green tea extract. I understand the extract is much stronger than just drinking some tea. And they observed the problem in rodents, and say clinical relevance is not yet determined.
As many advise--all things in moderation. I have a few tea cups of tea daily before 2 PM--it brings joy to my life. Lift your teacup and Cheers to All!
Yes, and rodents are not necessarily the same as humans as has been scientifically proven in MANY studies. So, I think moderation is always good. too much of anything I do not think is ever good. I know the Brits love their tea, and I like tea as well--hat coffee and would NEVER drink under any circumstances. But, all day long maybe not a great thing.. Important to include other drinks. For me its lots of water, also some with fresh lemon and sometimes liver cleanse recipes of drink, but also organic protein drinks and organic electrolyte drink--with VERY little sugar. So, mix it up and you will be fine!
Palbociclib: The bioavailability of Palbociclib decreased following administration of green tea extract in a murine model (79). Clinical relevance has yet to be determined. that means the green tea is not good with Ibrance. Thanks for the important info
Thank you Sandra. I drink other herbal teas and especially love ginger/turmeric tea and fruity teas, but stay way from any green teas. I use a bit of raw honey with them which I have heard is good for the immune system and an antiviral. I just got over Covid and I felt that the honey really helped. I love mushrooms and try to eat some sautéed with garlic, onion and olive oil like once a week. I should eat more of them, but my husband is not supposed to have them as he has gout so I forget to have him get them for me when he grocery shops. I have actually read that eating even 2 mushrooms a day can make a difference in your immune system. Although I have read good things about mushroom supplements, I know they are not really regulated and my doctor said Reishi mushrooms in particular are bad with Ibrance. I'm glad your decisions are based on scientific evidence. That is why I read your posts with great interest and believe what you have to say. Sending hugs
So you are taking fresh mushrooms or not? A lot of this depends on how and where the supplements are made. I do not actually take mushroom supplement pills. My mushrooms are a liquid concoction. and I have taken it for 24 years and totally believe this has been a huge help in my still being here as my initial diagnosis was extremely aggressive and given a 35% chance of survival for the first five years. My doc specialized in treating cancer patients and I have complete faith in her. Science depends on who you are looking up and a broad spectrum of scientific studies, not just some that propose to be the only way. I do not believe there is an only way for anything.
Dear Bonnie, I do eat fresh mushrooms and love them. I have not heard of a liquid mushroom concoction, but if you have been using it that long and it is not hurting you, that is awesome, especially if approved by your doctor. Mine just won't approve of anything like that.
Yes we are similar in personality just two different thought processes. I do not take anyones absolute anymore as their absolutes must have question on our part. I cannot blindly follow anyone including my onco team. Dont get me wrong, I do value my oncologist, touted as one of best in country but I cannot give my totalPower to anyone! That I believe is harmful.!!
Oh lord it’s still so early 8:30 but I’m
So whipped. Tomorrow my friend
Well hahaha, as powdered mushrooms are simply dried and ground. One has to be careful not other crap added but I don't do any of those either as I have enough mushrooms overall. And one must keep in mind that the oncos, who truly know little about nutrition mainly do not want anything r.emotely to skew any studies more than anything else. If there is a health improvement, then they can attribute to the drug and nothing else. I get that but I also get that.
Totally agree yiu can’t trust any of the industries and that includes pharmaceutical. They have already in past to be shown as liars with falsify THEIR studies and lying to public . Don’t think that’s little difference with them and other companies selling stuff. We need to think outside the box and really research reasearch and nit just who says their are the only science. That is about control and money money money. They will never find a cure for cancer because then they make so much less.
Night Sandra! I feel like I was hit by truck this week. I am thinking because three weeks of antibiotics, followed by monoclonal then taxol. Knocked me out
Sandra--I took Ibrance for about two years, studied reports and clinical trial data, etc. I have consumed some black tea during my whole time on ca treatment. So I think I can express my personal experience with Ibrance and tea. I can't imagine anyone drinking any type of tea all day long--I would be very ill if I did--but if that is what you think people might be doing, then advising against any green tea consumption makes sense. However, I believe on these on-line formats that it is more valuable to share facts and where to find information, as well as sharing their own experience, and then let people read it and decide for themselves. Isn't giving advice against the policy of this site? I am a bit new here--so not sure of the agreements. Thank you.
Sandra--Please do not stop posting!! I have really appreciated the information that you have shared--especially the links to recent studies. I am sorry I misinterpreted your comments. I reread them. And I agree--I have followed numerous FaceBook groups--and many are grasping at anything. The admins cut off anyone suggesting non-medical treatments. Please keep sharing your knowledge. Kay
Scan Results
First line of treatment 
Sternum metastases.
A new bone lesion
Possible side effects of drugs
