CLL: Facing the Fear and Loneliness
Posted by: Denise on: March 31, 2019
I just answered an email from a CLL-buddy who is feeling the fear and loneliness of a CLL diagnosis. She does not want to burden her husband by dwelling on her dark thoughts and worries about CLL, and her friends don’t seem to be any comfort. Of course not! This worries them too, and while they wouldn’t say it to her, knowing that a friend has a potentially fatal diagnosis makes them worry about their own lives, as well as about their friend. So what is a person to do? This was my answer to her:
Dear CLL Buddy,
I do understand how difficult it is to keep a happy face on this when you are so frightened. Eventually, you will feel confidence in yourself and in your health, and you won’t feel so frightened. Believe me, you are not alone in having fear of CLL! Here are a few suggestions that have worked for me.
1. Allow yourself to be frightened or upset for only one day at a time, particularly after a blood test that wasn’t what you wanted.
2. Research. The next day, concentrate on the blood marker that concerns you, and start some research on what you can do about it. Look up supplements and herbs. Make a lifestyle change, etc.
3. Have fun! Find time every day to do something you enjoy that is relaxing and gets your mind off of CLL! Read a book, go to a funny movie, visit with a friend (and not talk about CLL) maybe shopping or an art museum or something that you find fun (and gets your mind off the CLL).
4. Find your own personal meditation. I’ve tried meditation tapes (now they would be CDs or better yet, mp3s). This wasn’t for me, but many people find relief in this. My personal meditation is reading novels or writing, or even drawing. I have sketch books, and I find that when I’m sketching, I’m not thinking of anything but the pencil and sketchbook. I lose track of time. It is wonderful! Think back to childhood and what you enjoyed doing that made you lose track of time. Give yourself a gift of figuring this out, and then act on it!
5. Get a good night’s sleep. Make your bedroom light-proof so you can get a good sleep at night and make your own melatonin. Nothing makes you feel better than a good night’s sleep!
6. A new watchword: you are NOT about to explode! Any doctor that would see you today would send you home and then go about his or her business. You are not in imminent danger! Enjoy today! None of us know if there is a tomorrow (we get hit by the bus, etc., who knows?) So why waste today? Enjoy it! It is a gift you are squandering on worry.
7. Recognize that you can gain control of your health. It wasn’t until I became Macrobiotic (ironically, I am no longer macrobiotic, but still…) that I started to see the control I could exert over my CLL diagnosis. After one month of giving up all processed foods back in 2005, my WBC dropped back to 14, where it had been at diagnosis. While I’ve moved on from Macrobiotics, the lesson learned was that I COULD get control of this CLL thing. Since then, I’ve also learned that healing is all about the gut, the digestive system. Work on your digestion and you are working on your health! I’ve not been able to get to where my blood work indicates I’m CLL-free, but I am back in stage zero.
8. Seek out a therapist. If all of this leaves you worried still, see if you can find a therapist. There is nothing to be ashamed of about this. You are facing down your mortality, and we don’t like to do that. It is crazy-making. Back in 2003 or maybe 2004, I was constantly crying with worry and wondering how my boys would grow into manhood without me there. I worried about my husband. I cried about never meeting grandchildren. And see, all those tears were a waste of energy. That said, I DID see a therapist at that time, and it really helped me.
What I learned from him at that time was that I had to take action. Until that point, I felt like I was a victim; I had this CLL diagnosis and I believed it was too late to do anything about it. Damage was done, and I had to accept my fate. Now THAT was crazy! There was so much I could do, but talking to this therapist helped me see it.
If you continue to be depressed, please find someone who might help. If they make you feel worse, find a different therapist. But do try all the other items above, first.
And I AM here for you. So please write whenever you need to. I do truly understand. I’m wishing you radiant health and a wonderfully happy day! Love, Denise
PS Writing about your worries here, on the site, really helps others. We’re all in this together!
51 Responses to "CLL: Facing the Fear and Loneliness"
January 24, 2020 at 8:44 pm
Hi Denise, I for one are also happy/relieved you have not given up on posting to your Blog.I constantly draw on your ideas for inspiration
Your site is a wonderful alternative view to the medical view of “show me the science”
My latest Blood counts are RBC 4.52, Haemo 144, WBC 9.9 Neut Seg 3.8, Lymphocyte 5.2, Platelets 166.
The Dr is talking “partial remission” now though never specifically refers to my situation directly – yet.
January 24, 2020 at 11:55 am
Dear Renie,
God bless you for writing and sharing your experience with Google searches. I have been so upset with the Google Medic program that, as you can tell, I just stopped posting. So, you’ve given me hope that I’m not dropping my words into the abyss. If I write my experiences, people can find it. I’ve been so worried about the newly diagnosed, particularly those who would seek out this information. I know how bleak it is when you first hear the leukemia word. Because of you, I am resolving to get back to making posts. So THANK YOU!!!
And now I will proceed to responding to the rest of your post. I like your idea of cooking ahead. I don’t make smoothies ahead, although that is a great idea. And I, too, put in a lot of unpalatable items like raw kale, mushroom powder, protein powder, coconut milk, and recently I’ve added potassium citrate (for my low oxalate diet — not necessarily related to CLL). What I do make ahead is larger quantities of chicken or beef, usually roasted or simmered in a lot of water with seasonings. I then use the meat and the broth for other dishes during the week. It’s easy to set up and go to work. I joke that it’s like coming home to a wife cooking for me. 🙂 I do use the mushroom powder in soups, and I love your idea of using it in sautéed veggies!
I will be watching Fantastic Fungi tonight, and thanks for sharing with me and whoever is reading this post.
And again, my deepest thank you for getting me back on track! – Denise
January 3, 2020 at 6:39 pm
Happy New Year Everyone!!
Wishing you all a HEALTHY, prosperous year full of laughter, joy and goodness.
Hi Denise, it’s been a while since I’ve posted or emailed. I’ve been too busy and it’s showing in my blood work. Lots of great info as always. Bone broth…I started and it was good but I stopped because I have been on the road.
In any case, Google is going political on all fronts. From the presidential race to health monopoly. They do not like what you say, you’re censored. This is sadly what’s happening in the USA. Soon, we won’t have choices and I’m not being sarcastic or political.
I so appreciate this site. It gave me the avenue I knew in my heart I needed to take few years ago. I cannot thank you enough Denise and anyone who’s made suggestions or the protocol being followed. It’s a team effort that is working.
So now, I have to go get ingredients for some bone broth. Thanks Mike for the reminder.
I love Peak Immune and AHCC. Can’t go without them.
Best wishes.
Nathalie
November 20, 2019 at 7:12 pm
Hi Denise,
Just checking to see how you’re doing. I typically drop in every couple of weeks to see if you’ve posted and it’s been quite some time. Are you doing ok? Mike
November 22, 2019 at 12:27 pm
Hi Mike,
Thanks for checking in! Yes, I’m doing well and I hope the same is true for you as well. While I don’t post regularly, I do usually post more often than every few months. The reason I stopped…G–gle (who will not be spelled out) made a huge change in their algorithms back in June 2019 (this year). They have humans now who choose which health-related sites deserve to be seen, and mine is not one of them. So while I’ve not been all about rankings, traffic, and certainly not at all (at all!) about sales, they have downgraded my site and I barely ever hear from someone new. If you don’t search now on Yahoo, Bing, or most preferably on DuckDuckGo, you are not likely to find any of my posts. This has been massively discouraging. I’ve considered changing up to a Facebook format, but I’m sure it’s a matter of time till the powers that be (Pharma and FDA) will exert its pressure and these will also deep six this site. Worse yet, sites like Mercola.com are the main ones affected. This is vile and evil (same letters in those words; just noticed that) actions that will surely hurt people, particularly the newly diagnosed who want to find others who are motivated to take charge of their own health. Yes, I should post, but I’m so down about this I’ve just ignored it.
Worse yet, the email from this site goes to my gmail account, and the comments, which used to go to my INBOX, are now routed to the Promotions folder. Really? This makes me wonder if it’s not more of the same, as you-know-who is the owner of Gmail…
So, to get back to the original question, yes I am fine. I’m still working and it is a daunting task to figure out how to change up this whole structure to reach people. But I owe it to myself and to anyone who might benefit, to get going on this.
If you like, please let me know how you are doing.
All best, Denise
November 22, 2019 at 7:51 pm
Denise,
That really sucks! Honestly, I don’t know where I’d be without all the incredible information you’ve shared over the years. Do you know what criteria they use to decide which sites they select? Have you considered a Twitter account? I’ll put my thinking cap on to see if I can think of any ideas. BTW – my PLATELETS shot up to over 160 – they were as low as 130. The reason? Bone broth, which you suggested. Thanks for all you do! Mike
November 26, 2019 at 8:55 am
Thanks, Mike. It makes me happy to hear that my messages really help! What happened with G–gle Medic is that in addition to the algorithms, they’ve added human censors who read the sites and decide if they are official or not. If not, the philosophy is that these medically-oriented sites like mine are hurting people and should therefore not show up in search. There are some alternative doctors and other practitioners for whom this has been devastating. It destroys their business as well as their mission.
Such good news about your platelets! I’ve had to take it easy on the bone broth because of my problem with oxalates. But I plan to return to having it regularly again.
Not to worry, I won’t stop at this, just have to figure out the best way how.
Wishing you the best, Denise
November 18, 2019 at 8:55 pm
Hi Denise,
After contacting Daiwa Health about PI4/BRM4, below is the response from Daiwa Health.
Settled my mind as to the use of these products.
Go well
Terry.
Jill Sarmiento
to me, DHD
Dear Terry,
BRM4 and PI4 are exactly the same product.
However, we offer healthcare professionals 500mg and 250mg at 60 caps for BRM4 as prescription while PeakImmune4 is only offered at 250mg at 50 caps over the counter.
Furthermore, I thought you might be interested in our most recent YouTube video. You will find lots of good information about BRM4 as a natural immunomodulator: https://youtu.be/nWsn8dur8D4
Please let me know if you need further assistance.
Sincerely,
Jill Sarmiento
DHD Logo
T: (310)329-2362 ext.5476
F: (310)329-2648
W: http://www.dhdusa.net | http://www.dhdmed.com
November 22, 2019 at 12:30 pm
Hi Terry,
Thanks for sending this information, along with the link. I apologize for taking so long to respond. It seems that G–gle has decided that my CLLAlternatives gmail belongs in the promotions folder. So I’ve been missing emails. I will go to the settings and with some luck will be able to fix this.
Again, thanks for writing. I hope all is well! – Denise
November 11, 2019 at 11:15 am
I have been on this journey for 10 years. In the beginning it was very scary, until you figure out you are not going to die anytime soon. I was able to very easily bring my numbers from about 17 down to about 9 and it stayed there for years. About 2 1/2 years ago it reared it’s ugly head and has been been on a steady incline. Needless to say this is very upsetting. What has been the biggest thing you think that has gotten it under control or steady? Did you have all your root canals removed?
November 22, 2019 at 12:48 pm
Hi Laura,
First, my apologies for taking so long to respond. G–gle has been tucking my email notification into the Promotion folder (as well as tanking the SEO of this site because it’s not an officially sanctioned health person or organization). That put aside, I do have many suggestions for you. Unfortunately, we are not all one-size-fits-all, but what I suggest is certainly worth the try. I’ve been able to reverse my WBC from the meo-40s back to the mid-teens, and that was also after about 9 or 10 years at this, so please do not despair!
What I would do:
1. Take 10,000 IU of vitamin D3 (it’s cheap and very effective!) And a very good first step if you’re not doing this yet.
2. I highly recommend Peak Immune by Daiwa. It’s available on Amazon, IHerb, Vitacost, and on LuckyVitamin. So far, LuckyVitamin.com is the cheapest once you’re ready to put on Autoship.
3. Do NOT eat food, especially meat (but all food matters) cooked at high temperature, especially meats. Instead make soups and stews, and learn how to stir fry on a low flame or heat. This was huge for me, and the beginning of my WBC dropping some time in 2012.
4. Exercise. Our lymph systems loves this, and this IS lymphocytic leukemia. The more you move, the more your lymph system will move. Think of making it a moving stream rather than a stagnant pond that collects slime (which is probably not far from the truth). I’m no athlete, so I go on my elliptical at home for 10 minutes about 3-5X week. Should probably do more, but as far as I know right now it’s working. I also lift weights because of osteoporosis.
5. Reduce your stress. If your job is making you crazy, consider making changes so that you are not always stressed out. If it’s a relationship, minimize contact (like siblings or cousins). Hopefully it’s not a marriage or partnership.
6. Get more sleep. There are many things you can do for sleep hygiene. I keep my room dark with black out shades AND curtains, and have a red nightlight in the bathroom. I get ready for bed early and give myself the luxury of reading in bed to fall asleep. I try to get 7 to 8 hours each night. When I’m getting enough regular good night’s sleep, I only need seven hours. Many times I’ve had the feeling of swollen glands which may or may not have been related to CLL. But after a good night sleep, it pretty much goes away. Talk about cheap and effective. Don’t watch late-night TV. Read up on this, as these are what works for me, but there are other methods and suggestions.
7. Tell yourself, “I am NOT going to explode today!” This sound silly, but it works for me. If a doctor isn’t going all hair on fire about this, why should I? So, even after a less than wonderful test, I go back to the drawing board (more like a search engine) and start to find new ways to be well. Avoid G–gle, as they are dropping sites like this. Instead search on DuckDuckGo which is unbiased!
Please write again and let me know how you’re doing. I do so apologize for the lapse in time. (I will now look in my Promo folder if I don’t figure out how to WhiteList my CLL emails.
Wishing you the best of health! – Denise
October 15, 2019 at 4:24 pm
Hi Denise, How often do you get labs. Do you consult wth a doctor?
October 15, 2019 at 5:02 pm
Hi Laura,
I get labs about once a quarter (every three months). I have an oncologist who I see as infrequently as possible, and I also visit an alternative MD. That said, I don’t go to the doctor’s office every quarter. There are several lab services online at which you can place an order and get a voucher emailed. You take the voucher to a local approved lab (Quest, Labcorp are the two near me) and the results are either emailed to you or available on your account. This is much cheaper and more expedient for me, and it surely beats going to the oncologist’s where I have to pass the unfortunate people going through chemo treatments. I find this terribly demoralizing. I generally use Directlabs.com. However, another one is HealthCheckUSA. There are more.
If you are new to this, I don’t necessarily recommend this. And I would definitely still keep up with a doctor at least once a year. I didn’t start doing this till I was at this for about 12 or more years (of CLL diagnosis). Until you understand how to interpret your test scores, this can be demoralizing or dangerous. So learn your numbers! And educate yourself both at the doctor’s office and online or with a book. They are available. Knowledge is power. And the power to determine your own health or that of a loved one is paramount.
Wishing you the best of health! – Denise
October 8, 2019 at 6:03 pm
Hi Denise, whilst searching again for a Daiwa health Peak Immune 4 supplier a USA based company vcpe-club.com was found. Their prices are amazing but I have wondered whether it is too good to be true, a scam company or even a fake product company.
Do you have any information on the site ?
Go well
Terry.
October 10, 2019 at 1:13 pm
Hi Terry, I looked it up. To me, it’s a gamble. I’ve had problems with some cut-rate items on Amazon before, and then wasn’t certain if I wasn’t getting a re-packaged product rather than the real deal. So, it’s just my opinion, but to me it’s too important a pill. I buy from luckyvitamin.com and get it on Autoship, because I use it regularly. Other online vendors might also have a good Autoship price. I would check further. Like I said, it’s a gamble, it might actually be the real thing, but I’d be more than hesitant to find out. That old “too good to be true thing.” Let me/us know what you decide to do.
Thanks, Denise
October 11, 2019 at 12:44 am
Hi Denise, yes the “too good to be true” thing was popping up in my head so there is a company Netnutri.com who has good pricing and will ship here. I have found that some companies will not ship outside continental USA.
My last appt. with the Clinical trial unit gave WBC of 13 and RBC of 148 the doctor remarked the RBC is a significant result for a adult male so I hope it stays in that area.
Daiwa health produce another product Brm4 which is almost same as Peak Immune 4 have you had any indication of its efficacy.
Beigene also produce a CLL treatment called Venetoclax which is for CLL + CD20 depletion cell. The interesting aspect of it is that it incorporates elements of Seville oranges, grapefruit and tumeric/curcumin – the items I was told to not consume !
Go well
Terry.
October 11, 2019 at 5:05 pm
Hi Terry,
Good news on your WBC and RBC! Wonderful!!! And as to your questions, I am unfamiliar with the other Daiwa products, and also with the Venetoclax. I DO know that citrus is wonderful for CLL, just as it is for scurvy. I put whole organic oranges in my smoothies for a while, but unfortunately I have other issues that make it a bad fit for me. My WBC dropped, as did other markers at that time. So I think it’s a good idea, also with the cur cumin. I’ve noticed that many of the conventional treatments come with instruction to stay away from natural modalities (like the citrus) that work for healing. That said, if you are on a trial, I would stick with it and follow instructions. You are doing well.
Thanks for checking in. Hope I’ve answered your questions well.
All best, Denise
September 4, 2019 at 2:15 am
Denise,
I’ve read that CLL’s favorite fuel is sugar and secondly it’s protein. That being said, do you eat many fruits (which turn into sugar) during the week and if so which ones)? Also, what’s your opinion on legumes, starches (like rice), and beans (which also turn into sugars). Do you limit these and do you limit the amount of protein you eat in a day? Just wondering what worked best for you?
Thanks,
Gil
September 5, 2019 at 11:05 am
Hi Gill,
These are all great questions. My answer is what works for me personally. (So you will have to test for yourself. Also, a big note here: if you’re going to research about CLL alternatives, get off Google! Google is now policing everything related to medical that isn’t certified by a medical professional. So my site is now toast, according to Google. Go instead on DuckDuckgo, Yahoo, or Bing to get uncensored information!) Okay, back to your question.
1. I try to minimize fruit, but I have it every day. I chose green apples (Granny Smith) because they don’t spike your glucose as much as the red apples. I also eat more berries (in my case blueberries and cherries as they are low oxalate, also grapes, in season), but other berries are raspberry and strawberry. Berries also are lower glycemic than other fruits. It’s my personal belief, not founded on science, that natural fruit is God’s gift and it’s okay for us, within reason. I include them in my morning smoothie, and maybe have a small amount at lunch OR dinner (a half apple, for example).
2. Protein. Unfortunately, protein is also good for us, obviously. For whatever reason, my protein is always a tiny bit low, so I do not avoid protein. Neither do I eat more than a deck of card-sized amount of animal protein at lunch and/or dinner. I have to eat enough to keep my protein levels just sub-normal.
In my case, neither the type or quantity of fruit or animal protein has hurt my CLL numbers. I check them every quarter. I’ve eaten this way while improving in lab results. That said, this is MY experience. I think that everyone should get tested frequently, especially if you’re trying new diets or supplements. Check back to see how it’s working for you. I do wish there was one magic bullet for all of us, but alas, there is not. 🙁
Keep these questions coming. I like the way you think!
All best, Denise
September 3, 2019 at 2:07 pm
One more thing. Because of your question, I’ve recently added a small squirt of Castille soap to the laundry. I buy it at Costco or Trader Joe’s…it’s all natural. It has a nice clean scent, lavender, I believe. Not really necessary, but you can add this too, if you like.
September 2, 2019 at 11:14 pm
Hi Denise,
In addition to what you ate the last few days, how many times a week do you have eggs and what do you have with them and how do you cook them.
Thanks A Bunch,
Gil
September 3, 2019 at 12:55 pm
Hi Gill,
My diet is always changing up. That said, there are a few common points. I don’t eat processed foods. I buy fruit, vegetables, meats, eggs, oils, nuts, seeds, etc. Also some gluten free bread and rice cakes (yes, these are processed), but no cookies, cakes or candies unless home made.
Here is my diet during the week:
1. Morning smoothie – pea protein powder (I’m off dairy these days), freshly ground flaxseed, coconut milk (from a can, minimally processed), a few drops of Biosil (for my ever-lasting quest to preserve my hair), six ice cubes, some sliced zuchini raw (or other fairly neutral tasting veg), a good amount of kale or other low-oxalate green (I have oxalate issues, worthy of its own article), mushroom powder (OM brand, various mushroom types), frozen cherries, blueberries, grapes or tiny amount strawberries (oxalates again), and extra water if needed (if smoothie is too thick). Blend in Vitamix. Put in Yeti-type containers (two), and I take them to work. I try to wait till 1030 or 11AM to eat. The longer you hold off between dinner and breakfast, the healthier “they” say it is. After I eat the smoothies (with a spoon; I like it thick), I have a handful of pumpkin seed, sunflower seed and macadamia, along with white tea. I take a pot of white tea to work with me.
2. Lunch. I try to eat very little at lunch, but this is a work in progress, as I also need to keep my protein level up. So…either a half can of sardines, or one egg, or leftover chicken, beef or fish, depending), a little veg, like a few cucumber slices, some home made saurkraut, and a small amount fruit (half peach today – the other half went in the smoothie).
3. Dinner is more elaborate. I make one or two bigger dinners a week (roast chicken or beef, a fish stir fry) and then we have the leftovers in a different form for dinners (or maybe bit of it at lunch. I often make white rice, but don’t have too much of it. Cooked or raw veg (brocoli or whatever looks good in season), and dessert is either my home made coconut cookies or rice cake and sunflower seed butter, or a handful of the macadamia and seeds (I am restricted to nut choice because of my effort to remain low oxalate).
4. I make a large pot of white tea and put in a thermos and sip throughout the day. I also drink a lot of filtered water. No juices of any kind.
5. Eggs. Dinner is often fried eggs. I use a cast iron pan, but others would work. You can use either grassfed butter or organic EV olive oil on a low flame. When it’s somewhat heated (not bubbling!) crack open the eggs and be patient. Eventually they will solidify till you can turn them over. Add salt and delicious! You can also stir the eggs into a bowl with avocado and/or onion and other choices and cook the same method. Occasionally, you can very briefly raise the flame to hurry it along. But try to not make the pan sizzle. When it’s sizzling, it’s too hot and creating acrylamide, which is a carcinogen. Also, if you’re using the olive oil rather than butter, you can be creating transfats.
Another egg option is boiled or poached. I put the eggs in a pan with water and bring quickly to boil on high flame. However, as soon as you see the water is reaching a boil, lower flame to a medium simmer and time for 10 minutes. After this, empty hot water and run cold water over the pan for a few minutes. My husband even adds ice cubes at this point. The coldness helps make it easier to shell the egg. I am not an expert egg poacher, but if you decide to do this, please share with me (and everyone else!) your tips.
Also about eggs, I don’t worry about the amount. I eat as many as I like, maybe 14+ each week, and my cholesterol is fine. Actually, the cholesterol is high, around 200, but my ratio is always good, so no worries. Talking about cholesterol is a whole ‘nother issue, which could be it’s own web site! There is great dispute about whether cholesterol is the culprit in heart disease. I don’t worry about this myself, but… as always, research this on your own and ask a professional health person their opinion and make your own decisions. (This goes for everything on this site. I absolutely do not have the one answer. IN many ways we help eachother share our experiences. If there was one way to health, I’d be happy to share!)
All best, Denise
August 29, 2019 at 2:04 am
Hi Denise,
I tried the vinegar and you are right on. It works great! No smelling like a tossed salad. Lol.
Could you post what you have eaten for each meal over the last 3 days or so. Just looking for ideas to changing my diet.
Thanks A Lot,
Gil
September 3, 2019 at 12:33 pm
Hi Gill, Yes, the vinegar gets rinsed away. A nice side effect is that my laundry tub no longer needs scrubbing. The vinegar makes every load rinse clean. Will answer your diet question in the next response to your later post.
Thanks, Denise
August 6, 2019 at 12:24 am
Hi Denise,
I hope you are well and progressing with your Book plan.Your positive investigative approach to CLL is an inspiration to all of us.
I had another C.T scan, complete blood test and meeting with the programme doctor today. The scan report indicates neck and abdomen lymph nodes have reduced significantly. Haemoglobin/RBC is 148, (the programme doctor said it is a significant result for a adult male and demonstrates that the bone marrow has more room to produce red blood cells.) Lymphocyte is 7.4. Nuet Seg 3.8 down from 4.6. WBC is 12.4 . Urea has increased. to 8.7 but the programme doctor still doesn’t regard it as significant.
I would be interested to hear what folk here do regarding Juicing. I have a Oscar Neo and 2 to 3 times weekly make up a 2 litre container of fresh juiuce from a combination of Beetroot/carrot/apple/lemon/ginger/red chilli/onion/garlic.
Go well,
Terr.
July 27, 2019 at 10:28 pm
Hi Denise,
The Jason’s Powersmile Toothpaste… Do you use the one with flouride in it or the one without the flouride? There are 2 kinds.
Thank You Much,
Gil
July 29, 2019 at 10:32 am
Hi Gil,
I’ve never noticed and will now have to look. And thank you for pointing this out! I would go with the non-fluoride version. No need for the fluoride which messes with our thyroid hormones. Yikes. Again, thanks for the heads up. – Denise
July 23, 2019 at 10:50 pm
You’re the best Denise thanks!
When you put a little vinegar in your wash can you smell the vinegar on your clothes?
I don’t want everyone to say, that Gil is a nice guy, but he smells like a salad. Lol.
Thanks A Bunch,
Gil
July 29, 2019 at 10:30 am
Hi Gil,
I’ve been laughing about this request for a few days, and so sorry I’ve not gotten back to you sooner. No, of course your clothes do not retain the vinegar smell. In fact, the vinegar helps rinse away other odors you might find in the wash, and leaves clothing, towels, sheets, etc., smelling fresh and wonderful. Not only that, but my laundry tub no longer needs scrubbing from the soapy residue left over when I used to use more of the eco-friendly wash and no vinegar. I understand your concern, but vinegar is a great cleaning agent.
You could even fill a spray bottle with half and half water/vinegar and use to clean your bathroom and kitchen. The smell lingers briefly and goes away. (For that kind of spray I usually use straight peroxide, as there is no smell at all.) So, it’s taken me so long to answer that I see you’ve written again. On to the next question… – Denise
July 23, 2019 at 1:58 am
Forgot one, what brand do you use to clean your clothes in the washer machine?
Thanks Denise! You’re the best!
Gil
July 23, 2019 at 10:21 am
Hi Gil,
I use Trader Joe’s house brand, but any scent-free environmentally friendly wash-machine detergent will do. But…I use about 1/3 the recommended amount and then add a large splash of white vinegar (vinegar amount depends on how dirty the clothing or towels, etc.). Don’t get taken in by the more expensive “washing” white vinegar. White vinegar is white vinegar. I buy the cheapest house brand in large size at the supermarket. I wash as usual. It all comes out clean and wonderful. No dryer sheets, of course.
These are great questions!
Thanks, Denise
July 22, 2019 at 4:37 am
Cool!
I’m doing well also.
Does the organic coconut oil for a body lotion leave your body oily?
Also what brand do you use for toothpaste & mouthwash?
Thank You,
Gil
July 22, 2019 at 2:01 pm
Glad to hear you’re well! More answers:
1. The trick to using coconut oil is less is more! I put a tiny amount on the tip of my finger and spread between the palms of my hands. If I iput on too much, i wipe it dry with a clean washcloth. But mostly I know the right amount. Practice till you feel moisturized, but not oily. My husband uses this and looks like the creature from the black lagoon. LOL But if you practice at using less, it is not greasy at all, and smells wonderful!
2. i use Jason powerwhite peppermint toothpaste. I use no mouthwash. But…I do put peroxide on my toothbrush at night only, before applying the toothpaste. this is to whiten my teeth in a nontoxic way.
3. I realize it’s not relevant to you, but for those who are interested, I use Sierra Bees lip balm (my favorite is mint burst). Also Ecco Bella lipstick and concealer. And Suzanne Organics face blush.
4. If it’s not pure things like coconut oil or peroxide, you can look it up at EWG.org.
5. I’m not so wonderful about hair products. I use DevaCurl no-poo (shampoo) and conditioner, even though they’re not on the good list. Once again, I don’t like being frizzy and they work the best. (Trying the coconut oil, but it DOES make my hair look greasy — and the grease comes off on my hands when I touch my head — which I evidently do all-the-time!)
That’s it. Great questions, worthy of their own post.
All best, Denise
July 18, 2019 at 11:04 pm
Hi Denise,
Hope you’re doing well.
Got a question for you if I could?
What brand do you use for….
bath soap
dish soap
dishwasher detergent
body lotion
Thanks A Bunch,
Gil
July 21, 2019 at 4:01 pm
Hi Gil,
Thanks for writing. And yes, I’m doing well, and I hope the same is true for you.Here are the answer to your brand question:
1 I use Dove brand soap, the unscented. I use it both for hand soap and bath soap.
2. Dish soap I use either Trader Joe’s house brand or any other organic brand at the best price.(Seventh Heaven or local shop brands.)
3. Dishwasher detergent. Here I might surprise you. I use whatever brand in the gel pack. I’m always sure to load the dishwasher rinse section with white vinegar (the cheap stuff from the supermarket). The dishes come sparkling clean. Squeaky clean with no spots. When I’ve used the powdered stuff (organic or otherwise) there are spots and film on my glasses and my flatware (spoons, etc.) also look filmy. I vote for the shiny clean. I hope that any toxic in the soap gets rinsed well with the vinegar and hot water. (I’m always open to suggestion if you know a better plan.)
4. Body lotion I use organic coconut oil. I but it in the huge tubs at Costco and put it in a small glass container with a lid and wash and refill when I’ve gone through it. I LOVE this. I use a tiny amount on the tip of my finger, rub between my palms, and apply. I only ever use clean hands when dipping into the container. I’ve recenetly started using this as leave-in hair conditioner, but I’m still in the testing phase. I have very curly hair, so I really need leave-in product or I frizz.
You are welcome a bunch!
All best, Denise
May 22, 2019 at 6:31 am
Hi folks, my apologies for the wild comment about Peak Immune 4 with Curcumin 🙁 Brain fade. On the plus side I can look again to import the Peak Immune 4 .
I continue to take “Medimushrooms” 2 capsules twice daily for 3 months then will reduce to 1 capsule twice daily. I was hoping to see a change in my Complete blood count earlier this month but it may be too soon.
My recent C.T scan, complete blood count and appt. with the Dr’s showed a slight downward reduction in WBC & Lymphocytes compared to my February appt though the Urea count has gone out of range from 6.1 to 7.9 , the C.T scan indicated a further but lesser reduction of the Lymph nodes. I have been given another 3 month cycle and dependant on results will move to a six month cycle ( currently at 17 month cycle) at the two year point in the trial treatment. C.T scans are not my favourite activity so that will be a relief.
An interesting aspect is the trial treatment has gone from having the code name BGB311-304 on the capsule containers to now being named “Zanubrutinib” so there must be progress on its development.
I found a local nutritionist/naturopath recipe who markets “Bone marrow powder” so am now adding it to Pasture beef broth recipe in “Cancer kitchen’ book.
Go well and keep searching
Terry.
May 26, 2019 at 2:07 am
Hi Terry,
I’ve been away on a business/pleasure trip and not always in contact with my “machine.” So apologies for the delay in response. I’m glad you’re having positive results with the new Zanubrutinib. Please keep us all informed on how this goes.Also, I haven’t been writing about it, but I have been experimenting with Bone Marrow pills by Ancestral Supplements, you can find this on Amazon. I haven’t been at it long enough to know if it’s a factor for me or not. (Unfortunately what works for one does not work for all, in the natural path as well in the official medical path. This is why they do trials.)
Thanks for writing and please keep in touch! – Denise
May 7, 2019 at 1:04 pm
Hello All,
Hope everyone is looking forward to some long needed sunny days. So, I waited a bit to reply to any post as I was waiting on my lab results. Let’s just say I’ve been upset for that one day and heading back to the drawing board. I know what happened but wishing I was wrong…every time this happens. But I hope it’s what I think it is so I can correct it. WBC 30.3 (let’s just say I don’t’ like the trend that I’m seeing). However, everything else is in the normal range – go figure! even my RBC is at a 4.13 which hightly unusual for me. One other concern is that my iron is too high – 184 and the high range is 190 – this is a VERY first and that scares me. My doctor thinks I should consume less beet juice as that provides quite a bit of iron.
In any event, I’ve been w/o Pectasol-C for over two weeks due to a long travel stretch for work and no B17 for a while. However, I was taking quite a bit of green tea extract and curcumin but something is not right and I need to fix it. I thought the latter two would have made up for the lack of the former supplements but they did not. I wish I could say confidently that I will cut this back soon but I will definitely give it my best shot.
I will post with better news hopefully in a month or so.
Stay healthy and happy 🙂
Nathalie
May 10, 2019 at 9:56 am
Hi Nathalie,
I’m sorry you hit a bump in the road. It’s hard to be perfect when you travel (which is concerning, as I’m heading out for a 10-day trip soon). I think you’re on the right track. I stopped b-17 and many other supplements for a month at the recommendation of a new nutritionist (after a stellar blood test, go figure) and my WBC jumped in that one month from 15.1 to 20.7. I’d also been taking 6 bone marrow pills by Ancestral supplements and discontinued them as well. Fortunately, I’ve been too busy to stress over this, but I am returning to the pills I’d been taking. I, too, will post again in about another month. I’m curious if resuming my previous protocol will return my WBC back to the mid-teens.
In the mean time, we are both well and functioning and living our normal lives. I’ve had many, many bumps in the road. Because I made a pretty drastic change, I’m feeling okay about changing back and testing again. We are all our own science experiments. 🙂
Thanks for writing. We’re all in this together. – Denise
That’s true, we are our own science experiment. It really makes me wonder where we’d be if we didn’t take things into our own hands. Just a few weeks or a month is all it takes to see how rapidly the count goes. I sure am glad I decided to be proactive no matter what tomorrow brings.
As always, thank you for your encouraging words; and yes we’re well and moving on.
All the best,
Nathalie
May 3, 2019 at 11:30 am
Denise,
This is a fantastic post. Very thoughtful, empathetic and instructive.
Thanks for all you give to this CLL buddy.
Mike
April 5, 2019 at 8:29 pm
Hello Ladies,
I surely didn’t realize that Peak Immune has curcumin. Too bad Terry you can’t use it because it does keep those neutrophils at the correct range. How about AHCC, did you look into it? I’ve read about few people it has helped but I’m still waiting on me. Stabin used AHCC and green tea along with vit D to conquer his CLL. He also only ate fish no meat. Also cordyceps which you mentioned. I certainly will post once I have some concrete evidence that my numbers are only declining now they fluctuate – still stable but not quite where I’d like to be yet.
Well, wishing everyone the best.
Have a great weekend.
Nathalie
April 16, 2019 at 11:19 am
Hi Nathalie,
I’m not sure if I’ve already responded to this (but it’s showing up again on my dashboard). Peak Immune does not have curcumin. Here is a link to the ingredients https://dhdusa.net/products/peakimmune4-immune-complex. This is too good of a supplement to be cast aside for the wrong reason! Just wanted to get this out there.
All best, Denise
April 2, 2019 at 6:38 pm
Hi Denise, Your message is a wonderful/powerful/timely reminder for all of us here with the CLL condition. Thank you.
I recently discovered the PeakIImmune4 has Tumeic/Curcumin as an ingredients which is one of the elements I have to avoid as it clashes with the Trial programme capsules.
Recently I found a local company http://www.MediMushrooms.co.nz ( I am not associated with the company) who produce and market locally Cordyceps, Reishi, lions mane, Shiitake, Maitake mushroom capsules.
Apparently the mushroom capsules work on a bio active accumulative principal. They recommend 2 ea cordyceps, reishi, Shiitake , Maitake twice daily for three months then 1 ea twice daily for next three months of the four mushrooms then 1 ea daily as a maintenance dose rate.
It will be interesting to monitor effectiveness via my complete blood tests.
Go well. Terry.
April 6, 2019 at 5:35 pm
Hi Terry,
I just looked up the Peak Immune ingredients, and it does not have curcumin in it. Here is a link to the product on herb.com. (The ingredients will be the ingredients no matter where purchased.) Here is the text on that page (and on the bottle): Peak Immune 4, an immune enhancing complex containing Rice Bran Arabinoxylan Compound (RBAC), is produced by patented process using Rice Bran Hemicellulose and Shiitake mushroom mycelia.
And the link to the page (scroll down to “Product Review” section: https://www.iherb.com/pr/Daiwa-Health-Development-Peak-Immune-4-250-mg-50-Veggie-Caps/28387?gclid=EAIaIQobChMI7PyB7LW84QIVi4bACh2eLQb2EAQYASABEgIjE_D_BwE&gclsrc=aw.ds
I try not to take curcumin these days because of the oxalate connection. I hope this helps! – Denise
Thanks Denise, I thought so because I checked my bottles and didn’t see it so I’m not sure how Terry came to that so thank you for clarifying.
Nathalie
April 1, 2019 at 9:43 pm
Hi Denise, Your message to your CLL buddy is a wonderfu lpowerful reminder to all of us.
On looking closer at the PeakImmune4 ingredients I discovered it contains Tumeric (Curcumin) , substance Which clashes with my Trial programme capsules so have put the idea to one side.
In the interim I have discovered a local company http://www.Medi Mushrooms.co.nz ( I am not associated in any way with the company) which manufactures and markets Cordyceps, Lions Mane, Reishi, Shiitake, Maitake capsules so have started a daily regime of taking them to assist my Immune system.
Go well. Terry.
April 2, 2019 at 6:35 pm
Hi Terry,
The mushrooms sound perfect! Be well and please stay in touch! – Denise
January 25, 2020 at 5:35 pm
I am reposting a back-and-forth between myself and Renie that had an error in it. I think it’s an important post. I’ve also included my response.
FROM RENIE:
I was wondering what happened to the blog until it just occurred to me to check the comments. Glad I found you!
I realize search results are unique to each user based on past searches and location, but I just wanted to let you know that when I search with Google, you appear 1st when I enter “cll alternativesâ€, 2nd if I enter “cll mushroomsâ€, 3rd with “cll fastingâ€, and 13th with “cll supplementsâ€. You do not appear when I search “cll herbs.â€
I hate to imagine where I would be — both physically and emotionally — without you. I suspect that’s true for all of us.
A little tip that may help others:
I make smoothie concoctions only once/week and freeze them. When one quart is finished, another is ready for the next morning. NutriBullet blenders are around $50 and there is nothing they can’t liquify in three seconds, including nuts and orange rind (although they are very loud so I were earphones!). Freezing is a great convenience, and what I need is there everyday.
As you have mentioned, Costco or Trader Joe’s are the best prices for organic frozen berries. For those who aren’t loving kale, beets, carrots, cabbage, mushroom powder… it’s easy to make these more palatable in the blender.
I briefly saute different combinations of vegetables with mushroom powders, spices/herbs, seeds, wheatgrass juice, chicken bone broth, etc. enough to last 2 days. Very nutritious and filling! Different every time.
I hope you are all able to see the new documentary “Fantastic Fungi.†Denise, your experience with mushrooms is strongly validated in this film! https://www.rottentomatoes.com/m/fantastic_fungi
Deep thanks as always!
Renie
DENISE’S RESPONSE:
Dear Renie,
God bless you for writing and sharing your experience with Google searches. I have been so upset with the Google Medic program that, as you can tell, I just stopped posting. So, you’ve given me hope that I’m not dropping my words into the abyss. If I write my experiences, people can find it. I’ve been so worried about the newly diagnosed, particularly those who would seek out this information. I know how bleak it is when you first hear the leukemia word. Because of you, I am resolving to get back to making posts. So THANK YOU!!!
And now I will proceed to responding to the rest of your post. I like your idea of cooking ahead. I don’t make smoothies ahead, although that is a great idea. And I, too, put in a lot of unpalatable items like raw kale, mushroom powder, protein powder, coconut milk, and recently I’ve added potassium citrate (for my low oxalate diet — not necessarily related to CLL). What I do make ahead is larger quantities of chicken or beef, usually roasted or simmered in a lot of water with seasonings. I then use the meat and the broth for other dishes during the week. It’s easy to set up and go to work. I joke that it’s like coming home to a wife cooking for me. I do use the mushroom powder in soups, and I love your idea of using it in sautéed veggies!
I will be watching Fantastic Fungi tonight, and thanks for sharing with me and whoever is reading this post.
And again, my deepest thank you for getting me back on track! – Denise