CLL Alternatives

Living Well with CLL — June 2015 Update

Posted by: Denise on: June 11, 2015

DenisePeterDogsSummer2014Living Well with CLL — June 2015 Update
It’s been just about fourteen years since I was first diagnosed with CLL, and I thought it was time I made an update. It’s always my goal to post more frequently. I worry that people who go to this site will get a flash of fear if I haven’t posted in months (or even in a year!). I know I used to worry that other CLL-ers might have become too ill to post — or worse. So I always resolve to post more frequently. One resolution I have made good on is that it’s now possible to make posts in the comments section of this site rather that to be available only via email. This is huge! The more we can communicate on this site, the more people can benefit from the information we put out here.

I would like to say that as much as I’ve started this site to help others, it has been helpful for me, too. So a big THANK YOU to all the people who have become my email buddies! We are all proving that CLL does not have to be a death sentence. We can survive with — and without — conventional treatment, depending on our needs and particular situation. Whether we choose to go conventional or not, all the good things we do for our health will help us stay well and prevail!

Now I feel like I’m writing a State of the Union address. But what I really want to do is give an update of my health. I’m doing very well! My last blood test was better than it had been in eight years! Perhaps I will soon post my personal Xcel sheet, showing my blood test results from June 2001 to the present. Now here comes the question: what have I been doing to be well and stay well (and even get a little better)?

I wish I could give you a magic-bullet answer. But the answer is simple and also complex. (sorry) If you look through this web site/blog you will see a lot of the things I’m doing and have done. But there are some basics and I will share them with you.

1. Get eight hours of sleep each night. We heal while sleeping, so why not get the most benefit out of this. You can go to mercola.com and look up suggestions to make this happen. What I personally do is eat a light dinner (most of the time), make certain your bedroom is super dark (room darkening blinds or drapes), take your magnesium before bed. Wind down and keep electronics out of your bedroom. (I do read my Kindle each night, but no TV.) I love this! It’s very luxurious to get enough sleep each night. I go to bed with the expectation of at least a half hour to read. After that I sleep well. Also, I try not to drink too much after dinner to avoid trips to the bathroom.

2. Reduce stress. Yes, life is worth living with less stress. Maybe even worth more than a high-stress life. Make subtle changes in your work life and in your personal life to accommodate this. Be kind to yourself. Imagine that you’re helping someone else, if that’s what it take to allow yourself to say ‘no’ to others’ demands. (This doesn’t mean you have to become self-centered; just that you don’t over-extend yourself to the point of making your life difficult.)

3. Eat food as close as possible to the way God made it. This means eating a lot of fresh, organic vegetables, either raw or lightly cooked — or better yet fermented. Learn how to ferment your own food. It’s easy once you get the hang of it. I can perhaps make some posts about how to do this. But honestly, youtube.com is loaded with videos of more talented people sharing their cooking and fermenting tips. I also eat organic beef, chicken, turkey, wild-caught salmon, some dairy (not much, still have some lactose intolerance), organic nuts and seeds (pre-soaked) and occasional bean and rice dishes. I soak all grains and legumes for several hours before draining, rinsing and cooking. This releases the phytic acids that protect the grains/beans from spoiling, but also make these foods hard to digest.

I’ve recently started to drink GT brand kombucha, which is a fermented tea — and it’s delicious! And also chock full of probiotics and a great way to detox. I’ve taken a class through my local Weston Price Foundation in how to make this drink at home. Can post about that as well, eventually.  The point is to take in as many natural probiotics in the fermented foods and drinks. This is much more effective that taking the probiotic pill. (Not that I’m against pills; I take a boatload daily.)

4. Never eat burnt or even browned foods. I know this is hard to deal with to start, but honestly I’ve learned how to make delicious foods even with slow-cooking only. I make soups and stews. When I roast chicken, I season and then add a lot of water to the roasting pan (about half-way up the raw chicken), and then cover the top of the pan with foil or the lid, and cook at 350 degrees for the usual amount of time (an hour to 1.5 hours), keeping an eye on the chicken to make certain it doesn’t get close to burning. The chicken comes out tasting great! Fall off the bone delicious. I cook enough for leftovers, so that I’m not cooking all the time. On nights when I don’t have time to cook (or haven’t planned ahead) I slow-fry farmer’s market eggs in grass-fed butter on my cast-iron skillet. I simmer all the way through, carefully turning over when the eggs are just done enough to turn. No brown–front or back — and delicious. You can also boil or poach your eggs, as this is easier! (just love those fried eggs) 🙂

5. I’m gluten free all the time. I’ve been doing this for so long it’s not a challenge. I just about never eat bread,but do keep gluten free bread in the freezer for emergencies. I’ve found that if I eat even the gluten free bread twice in one day I get mouth sores! This is a message from my body to stay away from processed foods!!! I will make that it’s own number:

6. Do NOT eat processed foods! It’s poison, even the organic so-called healthy stuff (see GF bread above). It’s okay on a rare occasion, particularly when you’re with other people. but try to avoid this on a regular basis.

7. Exercise regularly. Your body was meant to move. Exercise as much as you can and as often as you can. I’ve never been athletic, but even I can exercise. I rebound, sprint on the elliptical, and lift weights at least three times a week. Rebounding is bouncing on a mini-trampoline. This is great for CLL as it moves the fluid through your lymph system. If we’re sedentary, the lymph doesn’t drain, which is not good. So bounce several minutes a day at least. Gentle bouncing works as well as high bouncing (and doesn’t jar your body so much). Sprinting means I go as fast as I can 30 seconds out of every two minutes I’m on the elliptical. I don’t recommend the treadmill. It’s more boring (to me) and too many people have been injured on it. I’m thinking of a co-worker, Sonia, Harry Reid, and also the Facebook COO’s husband. No point in taking good care of yourself and then risking your life while exercising, no?

8. Choose your supplements wisely. I probably take too many. Supplements are like advertising. You take a lot of them and they work; but you’re not sure which ones are working! Here are two of my favorites: (not going to include my entire list, as some of them are to preserve my hair as I’m one of the 1/3 of women who experience hair thinning with age; also take a lot for natural thyroid care and heart health. Not all my issues are CLL-related).

A. Peak Immune (by Daiwa) ~ has been a life saver, possibly literally, in keeping my neutrophils at an acceptable level. I’ve actually inadvertently done a double-blind on myself with this pill. When I take it, my levels are good. When I stop, after a few weeks or months, down they go. If your neutrophil level is fine, don’t bother with this pill as it is expensive.

B. Vitamin D3 ~In recent years, this vitamin has been shown to be a potent anti-cancer product. See this vitamin D3 article. Is my good health due to the fact that I’ve been taking 8,000 to 10,000 IU/day, in divided doses for years now? The point is to keep your level, measured in the vitamin D hydroxy test at 70 – 100 for cancer control.  My level varies between 79 and 102. (Nothing bad happened when I slipped above 100; I just reduce the dosage for a while.)

9. Get at least 15 minutes of natural sunshine in the peak time of the day during the summer months, despite what your dermatologist might say. Just don’t burn!!! Otherwise you are gathering up natural vitamin D the way Mother Nature intended.

10. Bone Broth Soup. (Okay, this is out of order here, but bear with me.) Boil beef bones and chicken soup bones (with and without meat) simmering for 24 – 48 hours. Store in freezer in portioned jars. The soup  should gel when refrigerated. This will provide cancer-fighting nutrients. There is a whole book on this subject by Sally Fallon of the Weston Price Foundation.  Go to their web site for more info: Weston Price Foundation.

11. Coconut Oil and other Fats. After all these years of being told to eat less fat, it turns out these saturated (and other) fats are healthy! You’re supposed to eat at least three tablespoons of organic, UNrefined coconut oil/day, possibly six tbsp/day — all in divided doses to keep the level in your body even. Coconut oil is an anti-pathogen, meaning that it kills bacteria and other germs. This supports your immune system in its fight against the CLL cells. More of your immune system is available. Butter (not margarine, which is a fake, synthetic food) is also healthy and if recommended for every day use. Take care not to overdo. I LOVE coconut oil mixed with toasted carob powder, and tend to overeat this, which tends to make me put on weight… so watch your quantity. You can get too much of a good thing.

12. Alkalize.  Every morning I have a 16-oz glass of filtered water with 2 tbsp ACV (apple cider vinegar) and 1 tbsp organic lemon (my husband juices the entire lemon to make use of the d-limonene in the peel, which is also supposed to be anti-cancer, but you don’t have to do that, of course). At bedtime I have a 12-oz glass of filtered water with 1/4 to 1/3 teaspoon baking soda. These drinks help keep my PH at about 7, which is desirable for preventing and treating cancer. The other good news, you are pre-, post-, or just plain menopausal, is that, at least for me, the baking soda before bed has eliminated hormonal night sweats. Yay! Easier to sleep. Measure your PH level with strips you can buy online or at your local healthfood store. My favorite online supplement/health item source is iherb.com. Very reliable and reasonably priced. (Please note that I am not an affiliate; this is an absolutely NOT for profit site.)

13. Blood test regularly. I really don’t like going to the doctor. I really don’t, especially not to the hematologist where I get to see people getting chemo, and a lot of sick-looking people in the waiting room. It is demoralizing! So what I do is I pay out of pocket for blood tests between visits (which are getting farther and farther apart). I go to Direct Labs and order a CBC and whatever else I think I need. (I have anemia and thyroid issues — and hair issues — as well as CLL.) You place your order online. It lets you know what location(s) local labs are available. You print out your order (requisition is emailed to you), take it to the lab, get the test, and in 24- 48 hours, most test results are available. In my case, my co-pays and deductibles are so high these days that it makes sense to pay out of pocket. If I became concerned, I would go to the doctor. (Just saying.) But in my case it’s been a great way to keep score and get an idea of what’s working and what isn’t. I also mail a copy of the results to my hematologist so we can be literally on the same page.

I guess I will end at Lucky 13. Please post comments on this and other pages, and I promise to get back to you. If you’d like a more personal communication, I can be emailed at cllalternatives @ gmail.com (no spaces). Wishing you good health and peace! – Denise

 

 

 

 

 

 

11 Responses to "Living Well with CLL — June 2015 Update"

Hi Denise – This is a great summary. I have a similar approach and will describe it to you later by email. If you think it is worth posting, we can do that too.

Hi Eric,
Would love to hear your approach! It would be great if you could share it here as well as via private email. The more people can see that there are those of use LIVING with CLL (in my case for 14+ years now — and very well, thank you very much), the more we can help people. Please write here if you like, and Private Email me at cllalternatives @ gmail.com (no spaces)
Looking forward to hearing from you! – Denise

Reishi and Tumeric Tinctures
My husband has studied the use of mycologicals for years in agriculture. We are both fungiphiles from the way back. We have been combing the forests for edible mushrooms for over 30 years. There has been a lot of advancement in the treatment of cancers and other diseases using mycologiclas in the last years. Paul Stamets has pioneered this field. He has a TED talk and several fascinating you tube videos.

Turkey tail mushrooms are in phase 3 trial for curing a form of breast cancer. Cordyceps is prescribed by Chinese doctors for several cancers and prevention. As is Reishi, the 10,000 year mushroom.

Reishi seemed to be one that could most positively affect CLL type cancers. Reishi is used as an immune system enhancer in Chinese medicine.
We make our own tinctures for pennies on the dollar for commercial products using commercially available Reishi mushrooms and Everclear 75% grain alcohol. After alcohol extraction, we boil the Reishi to extract the water soluble components, mix them together.

We also make an alcohol only extract of fresh grated Tumeric from Whole Foods or other organic food stores. A bit of Bioperine, derived from pepper mixed in is inexpensive and commercially used to make the Tumeric more bioavailable. We mix the tinctures together with the Reishi and boil off most of the alcohol. Again for pennies on the dollar compared to what you can buy on line or in the stores. We also make stronger tinctures than commercial producers.

I took a tablespoon a day and after 6 months my numbers dropped to a 10 year low and my ratios were the best ever. Then I stopped for 6 months and my numbers returned to where they were before I started. I have started again and after a month I was tested and my numbers are headed back down again. It is NOT a double blind study, but in my experience, so far, it is helping. It would be interesting to see if others had a similar experience.

There are also other mushrooms that could/should hold promise in this and other cancers including Cordyceps. If interested I can post some of the research, recipes, and sources here for others to follow.

Yes, by all means please post your recipes and any other information that you feel would be helpful. I’m wondering if there was anything else you took beside the tablespoon a day of the Reishi -Tumeric formula. A 10-year low is very impressive!!!

Hi Denise,
I discovered with interest your webpage. I am a newly diagnosed CLLer, but it looks I have the disease since many years. We found old blood results of 2008 showing high WBC (10’000). I am now around 40-50’000, with swollen nodes a little bit everywhere (most are under 1cm). Bone marrow infiltration is 60%. It looks like I have a good pronostic. So, still with W&W.
I am looking for complementary treatments, and your blog is really interesting. What I did so far: start to alkalinize (my ph is around 7.0), do more exercise, try to lower my stress and anxiety with complements and meditation, have the FODMAP diet, stop all refined sugars (with some exceptions for special occasions), stop alcohol (with some exceptions for special occasions) and reduce red meat consumption.

I went to see a doctor nutritionist, and she urged me to boost my immune system. And this is where I have some doubts, as boosting the immune system means producing more white blood cells! I understand that I need to be strong to fight possible infections… but at the same time I doubt it is a good idea to boost my bone marrow to produce more B and T cells. My onco-hematologist warned me against that (she said that I should in no case take Vitamin C or alike supplements). I see that you take peak immune and that it helps you reducing your WBC… I find that quite puzzling… Do you have any clue about it?
Another issue is that the nutritionist gave me some mushroom extracts (shiitake and reishi) to boost my immune system. Here again, my onco-hemotologist warned me that fungus might be a vital issue in case of a bone-marrow transplant (it is not an issue for me yet, but who knows about the future…). Here again, do you have any clue?

I am really puzzled, because I hear positive stories about mushrooms extract (see Sonia’s comment).
On my side, since I take mushrooms I have two contradictory experiences: first, my WBC count went down after 10 days of taking mushroom extract… but it was the same time I started with anxiolytics… difficult to say what is the cause of what… (I stopped anxyolotic in the meanwhile, or take it very occasionally). Second, since I take mushrooms, I feel that my nodes are swelling and some new nodes appeared (no big swelling, but I could feel them “working”). I stopped eating the mushrooms supplements yesterday, and some small nodes disappeared and the remaining nodes do not hurt anymore. So, I am really puzzled…

Hi Danielle,
I understand your misgivings about listening to your nutritionist-doctor because of the warnings from your oncologist. I can’t tell you what to do, but I can tell you my experience and my opinion. I also used to be frightened of any immune booster for the same reason; I didn’t want to take anything that could increase my WBC. It seemed counter-intuitive. However, it hasn’t worked that way for me. Peak Immune has been more for increasing my neutrophil count, which is actually a portion of my WBC. It works! On the bottle it says that it promotes NK (natural killer) activity, but in my experience it has improved both my absolute neutrophil count (it needed to be higher) as well as the neutrophil percentage. (It could still be higher, but I’m okay.)

About other immune boosters, at this point I am all for them. They have not one time made me ill. And as for the need for a bone marrow transplant, that is so far in the future as to be irrelevant. If that was a problem, you would have discontinued that product long before any transplant. (again, my opinion, based on my experience) If you are really concerned, a possible way to handle this is to try new products, one at a time, and have more frequent blood tests. I have them done through directlabs.com, I pay out of pocket and choose those tests I want to have done. A relatively inexpensive CBC gives a lot of information.) If I see that the product is not working, I discontinue its use. So far, nothing has made my WBC take off. The only thing that has made my WBC drop (to my knowledge) was not a product. What worked was discontinuing any burnt, carmelized, browned, overcooked meat (red, chicken, fish) or vegetable. The browning raises WBC, as the body sees this as something to fight.

About mushrooms, I eat shitake every week (no problem) and while I don’t take it as a supplement, I agree with Sonia. I would definitely give it a try. With all due respect to oncologists, they know a lot about the human body and about treatment and side effects and the course of the disease, etc., etc. But with some exception, they know very little about diet and supplementation. It’s hard to feel like you’re on your own about this, but I personally find it empowering. Once you accept that the doctor only knows what he or she knows, you are free to experiment.

But once again, always test. Don’t go for too many months without checking your markers, if you are trying new supplements. If your doctor is agreeable, you can ask to be tested more frequently. I prefer to fly solo (and go to directlabs.com) but that’s just me.

Please always feel free to write again, and let me know how you’re doing! – Denise

Hi Danielle, I been drinking Taheebo Tea , Pure Pau D’ Arco.. It’s organic and caffeine free.. Also take Coral Calcium 4000 mg a day, Oreganol Oil, New Chapter Zyflamend Whole Boby . I drink 8 glasses a day of the tea. My Dr said it’s amazing my nodes are almost back to normal. My WBC count has gone down from 33,000 to 17,000 in around 4 months …go to http://www.taheeboteaclub.com

Hello Denise, that you for your regiment for dealing with CLL. I was do in 2016. On “W & W” with a WBC of 17 at discovery. I immediately started researching a natural way to control the desease. I have been on an anti-inflammatory diet, 90% organic plant based. Daily exercise, no more than 2 glasses of wine daily. Zero refined processed foods. Sept. Blood work WBC was 13. My supplements do include pill form mushroom supplements. Thanks again, Logan

Hi Logan, Good for you for getting right on the alternative path! It took me several years to get my act together. I’m also taking mushroom supplements these days, btw. My WBC stays steady at about 17 for over a year now. This is good for me, as my all-time high was 47. I understand that 100 is the point at which docs recommend treatment. But some say no treatment unless there are symptoms. Yes, medicine is as much art as science, even today. I will say to you those famous words doctors are known to say when their cancer/leukemia patients are doing well for reasons unknown (to them): “Whatever you’re doing, keep doing it!” I love all this ‘spontaneous remission’ talk. I say this sarcastically, as there is nothing ‘spontaneous’ about it at all. It is the result of hard work and determination and a whole lot of will power. So happy you’ve been able to accomplish this. Best wishes for continued good health!!!

Hi Denise!
I discovered your blog when I googled “is Kombucha safe for people with CLL” and boom, there you were!!! I was diagnosed in May two years ago with cll and pmr which was extremely painful and I took prednisone for over a year with success! Now my white count is up but without other symptoms and I have Ct scans again next month. I have been down and feel so much better now that I have found a kindred spirit!! I am trying to do all the things you described including physical therapy for issue with legs. My PT told me to keep smiling!! Would love to hear from you!! Thanks for being such a shinning example of strength amid adversity!! Nancy

Hi Nancy,
Thanks for writing, and glad my words have helped! I don’t know what “pmr” is, I would personally balk at taking prednisone for that long. It does wear at the immune system, and that’s what CLL is all about. I agree with your PT about smiling. I would also find things to do that are just pure fun. We all have limited time on earth, even if we clocked out in our 90s, so why not enjoy ourselves!!! There are many things you can do to reduce your WBC. One is to stop eating any burnt foods, or foods cooked at heat higher than 350 degrees. This means slow-cooking, slow-roasting, slow stir-frying, crock pots dinners, and soups. It’s actually delicious. If you want crunchy, have some carrots!

Another body-building, WBC reducing thing is to eat fermented veggies (you can buy in the refrigerated section of your local market until you learn to make them), and bone broth soup. You will probably have to DIY it for the soup. I should post a recipe some time soon. But there are lots of recipes online. Just make sure the soup is simmered for a log time. We simmer for 48 hours or so. The idea is to get all the goodies out of the bone marrow. This helps our immune system. This increases the percentage of NORMAL WBC and reduces those pesky cancerous lymphocytes. It’s also much better (even if a lot of work) than dealing with pharmaceuticals with all their nasty side effects.

Please write again. I hope this helps.
All best, Denise

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