This may help you

[Mandy56]

I was diagnosed in 2010, though blood tests show that WBC started to increase in 2007, following a car accident. Since diagnoses I changed my diet fairly radically, eating pretty much vegetarian, though also eating fish occasionally. I attribute the slow progress of the disease to that, plus feeling really well, lots of energy and working full time at a demanding job. Had a breast cancer scare last year, read Your Life in Your Hands by Prof Jane Plant, so cut out dairy and followed a lot of the additional advice in her book. I also saw the news on this forum about turmeric, though as it "fights" with green tea extract, I take it for 6 days, day off, then 6 days of green tea. Went to see my consultant this week and remarkably lymphocytes are down, platelets now pretty much normal, red blood cells normal, WBC down from 35 to 32. Consultant is delighted. Go back again in 8 months.

I know people get very upset if they think they have to give up their favourite foods, but I think it is completely worth it, as I feel so well and hopefully it is really having an effect .

Just thought I'd share if anyone else wants to give dairy-free plus taking turmeric a go.

[Peggy4]

Sounds worth a try Mandy. Can you tell us which brands/how much etc....you use? Did you discuss it with your consultant beforehand? I understand green tea extract can cause liver problems,

Thanks

Peggy

[Kaycab]

Mandy thank you for your post! As a newbie I am curious as Peggy regarding amounts and brands. There have been wonderful posts regarding green tea and nutrition. The more info the better!

Kathy

[Mandy56 in reply to Kaycab]

Hi All

The dosage I've been taking is 1200 mg cur cumin (turmeric) extract (the Supplement Place) and 316mg green tea extract (Nare's Garden). I've taken that for a few years and when my GP checks my liver, it's fine. Forgot to say that on Jane Plant's advice I aldo take 400 mg organic kelp from Nature's Own.

I haven't discussed with my consultant, as my experience is that they are very entrenched in their views.

[Peggy4 in reply to Mandy56]

Thanks Mandy. Interesting to read about different approaches to helping ourselves. I think that the phrase 'you are what you eat is definitely true in some respects. The anti-inflammatory aspect for sure. Thanks for the post.

Peggy

[Canuck901 in reply to Mandy56]

Hello

What are the brands of curcumin and green tea extract that you use ? Please contact me directly , greatly appreciated

[Ajkeli73]

Mandy I totally agree with you. Changes in diet can bring the numbers down fast. I was diagnosed only 6 months ago with WBC on the low end for CLLers at 15 and ALC 6.2. Platlets normal. Looking back at previous results it's been at 15 since 2010. I had no symptoms (apart from hot flashes once or twice during the night which I contributed to monopause or the red wine) at the time until they told me I have slightly enlarged lymph nodes. I was doing yoga, working out at the gym 6 days a week and playing competitive tennis. I felt in the best shape of my life. Go figure. 😕

I changed my diet drastically. Started a raw whole-food plant base diet. Lots and lots of raw fruit and vegetables. Salad dressing lemon/flax oil. Remove all animal products, dairy, meat (including fish), processed foods, sugar, baked goods (flour, sugar & salt ) from my diet. On the rare occasion that I have bread I go gluten free as wheat is inflammatory. Oatmeal to keep the weight stable.

Just had my four month check up. WBC is down within normal range at 10. My ALC is still high at 6. I've lost about 10kg since I started the vegan diet. Also put turmeric in my green juices twice daily. I know I said no dairy but I'm doing the FOCC ( Dr. Budwig protocol cottage cheese /flax oil) daily and wondering if that is what's keeping my ALC high. Even though it's organic fat free it's still dairy🤔It's kind of the +driver to get the -oil through the -cell wall I've been told. Just call me the mad scientist AJ😂

Hope you all have a good day

[Mandy56 in reply to Ajkeli73]

Fascinating AJ and what an amazing result. If you haven't read Jane Plant's book, I thoroughly recommend it. She was a scientist and beat breast cancer through her research after she had been given 2 months to live. She shares many of your views.

[yvonnef in reply to Ajkeli73]

Hello AJ, it's encouraging to read that you have been doing FOCC and your WBC went down. my husband started FOCC couple months ago. The thing is I read that leukemia feeds on protein glutamine not sugar like other cancers. I'm so worried that the FOCC cottage cheese's high on glutamine may not be the right thing for CLL. Maybe that was a reason that your ALC was not moving much?

How are you doing these days?

Thanks so much for sharing. Best, Yvonne

[CLLCalifornia-USA]

FYI , Jane Plant died March 2016.

[Mandy56 in reply to CLLCalifornia-USA]

Yes, I know, from a blood clot, not cancer.

[CLLCalifornia-USA]

I read Jane Plants Book, Your Life in Your Hands and found it to be a little far fetched. I looked to see if there had been any research on breast cancer/dairy and found the following. ncbi.nlm.nih.gov/pubmed/211.... I don't think soy prouducts are that safe for women with breast cancer, but I could be wrong. Sally

[Ajkeli73 in reply to CLLCalifornia-USA]

I use a lot of organic soy milk and tofu for at least a year prior to my diagnoses. Since none. I read that it's one of the most modefide crop right up there next to corn. Cheap to produce and highly processed. You will find some form or the other in just about every pack, can, box in the grocery store. The good soy that the Asians use is the fermented soy like miso soup and nato and not the cheap junk they try to market as "healthy" in the west.

[Mandy56 in reply to Ajkeli73]

Scarey. Is organic soya GM as well?

[Mandy56]

Well Sally, everyone has their own views and experiences. Jane Plant's book lists all the research and experiments across the world that support her theories, so as a lawyer, I found it compelling evidence.

[CLLCalifornia-USA in reply to Mandy56]

Well Mandy, it's true everyone has their own views and experiences. Jane Plant was a professor of Geology and to my knowledge no medical background. Please correct me if I am wrong. She was not a scientist in the field of cancer. I personally don't feel she had the background to tell people how to treat cancer. I will trust the men and women who have devoted their lives to studying cancer and looking for a scientific cure. Also, her dairy free diet didn't prevent sequential recurrences of secondary tumors throughout her body. Could it be her acceptance of surgery, radiation, chemo, drugs, etc. brought her periods of remission?

I feel her books are a bit quackery and pseudoscience. I found no compelling evidence that proved otherwise. When we have cancer/leukemia , we will try about anything in hopes for a cure. There are several books and websites that pray on our vulnerability. If this diet works for you, I am happy for you.

Kindest regards,

Sally

[Mandy56 in reply to CLLCalifornia-USA]

Crickey, my intention was hoping to help other sufferers, not engage in an online argument, so rather than responding to your comments I suggest we agree to disagree and leave it at that.

[Ajkeli73 in reply to Mandy56]

I'm definitely going to read it. Thank you Mandy!

[yvonnef]

Hello Mandy, thanks so much for sharing what you have been doing. My husband has been drinking 3 cups of organic matcha green tea a day and 1 tbsp turmeric on salad at lunch every day. Not sure it's enough of time to wait about 2 hours between green tea and turmeric...

Hope you are doing well. We are thinking of starting green tea / turmeric supplements but need to do a bit more research to not mess with hubby's liver. Best, Yvonne

[Mandy56]

Hi Yvonne, hope your husband is feeling well with his supplements. I have just read another book, which is pretty mind blowing. Written by a doctor and he cites all the research done across the world to back up his findings. CLL and other blood cancers are specifically mentioned and various herbs and berries have been trialled that appear to help. The book is How Not to Die by Michael Gregor MD. It really is fascinating.

All proceeds from his book go to charity, so not a charlatan!

Best wishes to you both

Mandy

[yvonnef in reply to Mandy56]

Thanks so much for pointing me to Dr. Gregor's book! It is indeed mind blowing. I quickly read the Blood Cancers chapter with my husband. It talks about cancer-causing poultry virus and my husband was like "yes. I told you everything started from that bad chicken (not fully cooked) dinner while we were traveling". The dinner got him seriously sick for a few weeks. A year later, MBL diagnosis that progressed to CLL. Now what we read confirmed hubby's theory. Just wow. I wish we never walked into that damn restaurant!!

Anyway, we are now on plant based diet with Budwig protocol, green tea and turmeric. Best wishes to you too! Thanks again, Yvonne

[yvonnef]

Some encouraging news to share -

After 2 months of following Budwig protocol as much as we could, my hubby's CBC (July 1st) came back way better than the one received just 2.5months ago in mid April. WBC went from 15.2 to 10.2 K/ul and ABS LYM from 10.03 to 3.81 K/ul. Simply amazing.

[Benlewis in reply to yvonnef]

Sounds to me like a couple of you, who have never posted or commented here before, are trying to sell supplements and books. You do not belong on this site. Our members are far too bright to fall for this BS

[Mandy56 in reply to Benlewis]

That’s quite an accusation Ben. I have posted many times, from prior to starting FCR to post FCR. I hoped some of my experiences may help others - that’s what we do here isn’t it? I have had so much help from other members.

As with all shared experiences, you can take it or leave it.

[Benlewis in reply to Mandy56]

Well it seems yvonnef has never posted here before and my apologies but yesterday i could see no prior history for you. Today I can so clearly there is a system issue.

[Mandy56 in reply to yvonnef]

That such wonderful news Yvonne. You must both be so happy.

I’ve looked up the Budwig diet and will definitely study it.

What we put in our bodies must be key to our best health.

Thanks for sharing. Xx

[yvonnef]

I don't have anything to sell here. Budwig is nutritional whole food based. I posted the update because I'm thankful for many on this site who shared their experience and knowledge.

[AussieNeil Partner Administrator in reply to yvonnef]

Is your husband still taking organic tea and turmeric? There's more evidence of EGCG in tea reducing lymphocyte counts and node sizes than any other 'natural' protocol. Then again, it's the overall trend that's important. Like your husband, I progressed from a low lymphocyte count (SLL) to CLL and as that happened I've seen drops in my lymphocyte count in subsequent readings from 12.2 to 4.7, 19.8 to 8.2, only for them to bounce back up subsequently. Also by concentrating just on lymphocyte counts, we are ignoring what's happening with the tumour load in the nodes, spleen and bone marrow. In my experience, what's far more important than monitoring the lymphocyte count trend is the trend in haemoglobin and platelet counts, as these reflect how much the CLL is infiltrating the bone marrow.

With respect to the Budwig diet, here are some overviews from reputable sources:

cancerresearchuk.org/about-...

mskcc.org/cancer-care/integ...

healthline.com/health/budwi...

From the first reference: "There is no scientific evidence that the Budwig diet treats or cures cancer in people. And there are no published clinical trials researching the diet in peer reviewed medical journals.

:

Most of the research has only looked at flaxseed not the Budwig diet and this has mainly been laboratory research. Scientists have tested substances in flaxseed on cancer cells. This is very early research. It suggests that these substances may help to stop the growth and spread of cancer cells.

Studies of flaxseed in animals have also shown that it may have some effect in stopping cancer from growing and spreading.

Scientists have also been looking at lignans or phyto oestrogens (plant oestrogen) in flaxseeds. They are not exactly sure how it works. But they think that lignans may act on cancers that depend on hormones, such as some breast cancers. They also think that they may act as an antioxidant and slow cancer cell growth."

Ten years ago, Dr Brian Koffman said that he was "Still on the Budwig diet- cheap and easy and safe- Flaxseed oil and essential fatty acids. I believe it has helped some cancer patients and it has no down side." bkoffman.blogspot.com/2009/...

I don't know what his current thoughts are, but in the last 10 years, Dr Koffman has had a range of treatments for his CLL, including most recently Ibrutinib followed by CAR-T therapy a year ago.

Neil

[deveritt in reply to AussieNeil]

I take regular flaxseed oil capsules simply because our diet is low in sources of Omega-3. Would never expect it to keep my CLL at bay, but no harm done and glad it's under research.

[yvonnef]

Neil, those were significant drops (12.2 to 4.7 & 19.8 to 8.2)! Wish they didn't bounce back :(! Our CLL doctor did mention the numbers can fluctuate but I got too excited to not share. Hope it's a trend, not just a temporary thing. Not much changes with hemoglobin and platelet counts so far (13.3 to 13.4 & 205 to 218). We are planning to add nutritional yeast (Vitamin Bs) & more seaweed (iron) in our diet.

And yes, hubby has been taking 2, 3 organic matcha green tea a day and turmeric in salads at lunch. The budwig protocol actually is a comprehensive diet + life style change. In addition to flaxseed oil + cottage cheese mix, vegetarian whole food diet, green or herbal tea, juicing and daily sunbathing are included. Hubby also x2 his time at the gym. There is no magic pill. It's optimizing overall health like you and 70s-80s-overlander have been advocated all along! Thank you guys!!

Btw, we just started taking green tea extract as well about 2 weeks ago. Slowly ramping up the dosage. Will monitor liver and CBC every couple months.

[deveritt in reply to yvonnef]

I'd watch the sunbathing - skin ageing and cancer! As well as flaxseed oil capsules I take vitamin D (not a lover of direct sun as I burn easily), and have had a plant-based diet (with occasional goat dairy/cheese as I'm allergic to cow dairy) for many years.

[yvonnef in reply to deveritt]

Yeah we are careful about not overdoing it. I understand skin cancer may be a threat for CLL. Dr. budwig talked about 10 to 20 mins outside around noon everyday so it's not excessive. My hubby is active and healthy at the early stage (just progressed from MBL to CLL this year). The goal is to do as much as we can naturally now to fight back CLL when it's easier and never get to a point of needing treatment, while maintaining a good quality of life throughout.

We just added vitamin D3 supplement also. Would like to maintain it at an optimal level (50 to 80 I read). No flaxseed oil capsules. The budwig protocol is to use a blender to mix organic cottage cheese with organic cold pressed flaxseed oil to make it easily absorbable by the body's cells. We also add organic freshly ground flaxseeds to the mix with organic blueberries and walnuts. It's actually a pretty yummy breakfast. I started to make that for myself also :).

And yes we love goat dairy. Specifically goat kefir. We add that into the flaxseed oil CC mix for thinning. Other than the mix, it's plant-based diet only for hubby and zero added sugar.

[deveritt in reply to yvonnef]

Sounds great, with overlaps to my dietary approach

Worth noting that I've been advised by the consultant (and read up) about avoiding Omega-3 (Flaxseed oil, which I used to take) if taking Ibrutinib.

[yvonnef]

Another 2-month CBC follow-up -

My hubby's WBC continues to drop from 10.2 K/uL to 6.1K/uL and ABS LYM from 3.81 K/uL to 3.28 K/uL. Haemoglobin and platelet counts have been going up slowly (HGB from 13.4 to 13.8 g/dL & PLT from 218 to 233 K/uL).

This looks like a trend in the right direction, not just a fluke! Hope you all are doing well also <3

[Mandy56 in reply to yvonnef]

That’s great news. Really happy for you both. Look forward to the next updates. Xx

[yvonnef in reply to Mandy56]

Thank you Mandy xoxo. Tbh, I did not expect this fast turnaround even though we were desperate for positive news. I got so anxious and unable to sleep before the 2-month checkup. I feel for everyone here that this CLL journey is really a roller coaster ride. It takes a lot emotionally to be able to accept the new normal and deal with fear of uncertainty. I'm grateful that we now feel hopeful. Hope to hear good news from you and everyone here also <3

[Hidden]

I hope I'm OK jumping in to your thread but I find it fascinating. I'm doing the green tea, Curcumin protocol but your blog is the first I've read about needing to alternate as they fight each other. In fact my green tea tablets have Curcumin added to them!! -eek! Maybe thats why I'm not getting anywhere. My ALC is 91k and been rising rapidly last 2 years. Think I will try Budwig so have a question. Of the flaxseed/oil combination which is more important: the flaxseeds or the cottage cheese? Many thanks.

[Mandy56 in reply to Hidden]

Hi Tobago,

I think you need to address this to Yvonne, as she was doing the flaxseeds and cottage cheese. I think it was in The China Study that I read about green tea and curcumin “fighting”, if you want to read about it.

In the end, after an unbelievably stressful few months (not CLL related), my spleen ballooned and I had to have treatment. My bloods were still pretty good, bar my platelets.

Now I’m on a whole new regime, trying to build up my immune system after FCR!

Good luck to you. X

[Hidden in reply to Mandy56]

Thank you Mandy. Sorry to hear you had to have FCR. I believe my CLL was caused by 30 years of chronic stress, so convinced there is a strong link. I have The China Study here, so its about time I got around to reading it. I go to a herbalist in Scotland for my CLL and one of the things he has me on is Astragalus. I believe it makes a huge difference to my immune system, so worth checking out.

Thanks for the info on green tea and good luck on your CLL journey.