Hi Denise!
Love to hear all of this good stuff! Please please keep it up! I am new to this site. I’ve had this “monkey on my back” for 11.5 years now. Still doing good. Platelets getting a bit low, but they fluctuate unlike some other numbers. Just want to say “hi.”
Geri
CLL is a disease that can often be cured if treated, but is almost certainly fatal if not. This is the policy of a clinic in Australia. They have a waiting list, but for CLL the patient is tested immediately, and if diagnosed with CLL they start the treatment. There isn’t “Watch and Wait Policy”.
Hi
I’ve gotten a lot of hope out of your blog. I just got my dx, having been waiting on my results for the past few weeks and anticipating that I do have it. Unfortunately I have poor cd38 marker and that is terrifying. I will go reread your post on not letting the fear run away with you, as I feel I have a death sentence looming even though I know that is the shock of the initial diagnosis. My wbc is just 16k. If, as I suspect, I’ve had it since 10/2014 based on a cbc report I pulled out, it’s stayed stable the past two years. But that would also start the clock ticking two years earlier…
This doc (I will likely be switching) doesn’t think food and supplements necessarily help but that they don’t harm anything either. I have to believe that they do help.
One question for anyone here who knows: what about the danger of overstimulating my immune system? Could that hurt me?
Thanks
Hi Denise,
Just stumbled on your site. Nice find.
I’m 60 too. I read a great book for guys called Younger Next Year – there’s a version out for ladies as well. By their standards, you definitely are not exercising enough. I recommend the book to you.
Very happy to hear you have been living with CLL for 14.5 years! I’m planning to spend more time on your website after the hectic holidays are over, but I am wondering if you’ve posted anywhere what your genetic markers are that led you to CLL? I’m referring here to markers like CD19+ or CD38- and others. These markers make a great deal of difference in disease progression. If someone had your same markers, the odds are increased that what you’re doing to stay alive is exactly what they need to do too. Of course, what you suggest are a lot of good things to do regardless of our situation, I’m just suggesting that if my markers matched up with yours, wow… I’d be plenty motivated to try something like bone-broth soup!
I was diagnosed with CLL in 6/14 and WBC was around 18K. I was very gradual for awhile, but I was at 57K 6 months ago and now I’m at 150K. I know that isn’t good. (Platelets are rising though. Go figure.) I have already made substantial improvements to my diet but I am not all the way there; I plan to make adjustments in 2017 obviously, and hopefully before I need treatment.
Anyway, open to all thoughts and I am so very happy you are doing so well!
Hi Denise,
First time on this interesting website. I also have CLL diagnosed about 8 years ago. Regular bloodwork and visits to oncologist. Levels not high enough to require any treatment. My partner and I live a very healthy lifestyle. We exercise with various activities, hiking, biking, kayaking (now snowshoeing in winter) and follow the requirements for a healthy diet. We do like the odd treat though. We both like dessert but we’re not overweight. Thanks for initiating this website. I will keep in touch and pass along any information I come across or perhaps some good recipes. Have a Merry Christmas and a HEALTHY New Year. Marilyn
Hello Denise
First of all thanks .. I appreciate your website. My husband Doug (64) was diagnosed last year with 0-1 CLL. We have been eating organic where possible vegan mostly. I found info at Chris Beat Cancer and with my own experience having Lupus under control when I eat mostly raw vegan. Doug is raw until evening meal then he eats cooked and he does have cod, pollack or scallops 2x a week. Green Smoothies and fruit are staples and he says he has more energy than when he ate standard American diet.
I understand that vegan didn’t work for you. I tried Paleo version for Lupus and it didn’t work for me but I’m willing to try for him if it lowered Doug’s numbers. I totally get high temp food making numbers rise. It certainly is inspiring that your numbers are going down with your diet. Love him to try other things that have worked for you but Doug doesn’t eat fermented foods, nuts or citrus because of eczema which if he avoids those he doesn’t struggle with.
Doug initially lost weight vegan but has held at what we assume is his natural weight. Lately symptoms have increased .. small lymph node swelling back of his head and one in his throat. He’s had chills (and sweating at night overdressing when chilled). Feels more tired than he use to. Turmeric seems to lessen these symptoms or eliminate them depending on how many capsules he takes. He sees his doctor in a week and I have a feeling he will be bumped from 0 to 1 to 1-2.
So my question is whether during the almost 15 years since you were diagnosed if you had any symptoms other than your blood work numbers high? Also if weight loss and numbers increases were main reason not to eat vegan any longer?
With my Lupus life is and has been challenging for 30+ years so this past year has been even more stressful but we are still working (home business) and keeping our sense of humour.
Thanks in advance for your time,
Deena
Denise, I have CLL and want to read your news letter. I tried to send you an email but your address didn’t work.HELP!!!!
I have had cll for eight years.
Thank You,
Ed
Hi Denise! Hope you are well and happy…. Just a little question… have you used or use oxygen drops? I was wondering if they were useful.
Hi Denise,
So glad to hear you’re doing so well. I’m hoping to keep my numbers in check and as I’ve mentioned to you – you’ve been such an inspiration to me. The hard part for me is try not to worry so much about CLL but do everything in my power to suppress this. I’ve lost so much weight on a plant-based diet and it’s very scary because I never weighed over 115 – yea, go figure! My husband is worried that my eating habits are what will kill me not CLL. I’m now looking for other healthy options to put some weight on. Anyway, I wanted to express how glad I am for you. We’ll be in touch.
Nathalie
Hi Denise. I joined Cll Alternatives in 2014, 6 months after diagnosis. A lot has gone on in my life since then, moving house in August of 2015 was a big disruption! I have come back! There is nothing else on the internet that comes anywhere near this forum when it comes to getting help and reassurance. Just had my 6 monthly check up and all is stable still. No “lumps and bumps”, no B symptoms though those lymphocytes keep going up (17 at present). I had flu for 3 weeks just before my hospital visit and my platelets were said to be raised a little. Dr put it down to the flu. Can you tell me about platelets and how they fit into the CLL picture? Many thanks……
Jennifer
Denise, your example has been very helpful to me. I am also doing well and that is based on 50 little changes in my life – some of them seemed big at first but they don’t now. I think of this as raising my level of health overall and rising about the many chronic conditions that are called ‘normal aging’ but most people. I choose not to subscribe to that program!
I appreciate your story so much today this has been a very difficult daymy numbers have gone up I was diagnosed 2 years ago and had done fairly well then today I spiked up it helped to read what you have been doing do you have a recipe for you bone soup and orange smoothie
Congratulations Denise! Yes you’ve worked hard for the great results.
Michael
1 | chuck wilber
June 4, 2019 at 6:36 pm
I was told I had cll about 7 years ago I am with you 100% I try new things as I see fit, I drink tee eat only good quality food and hang out with only positive people. your mind is what will get ya. Keep busy no mater what I am 70 and I don’t feel old but I do get tired I learned to listen to my body and do but don’t do to much I also had my colon removed due to other things so the vegies I eat are steamed but I do eat some raw
Denise
June 6, 2019 at 2:39 pm
HI Chuck,
Thanks for writing. I agree on the positive people thing. (This is not always possible, but I do my best.) Also, I think that steamed veggies are just fine. From what I know, it’s okay to cook all your food, just not quickly at high temperatures, like BBQ grilling or even roasting at high temps. I love slow cooking (simmering pot of soup or stew on the stove top) and quick water sautes, adding oil and seasoning almost at the end of cooking. Delicious AND non-carcinogenic.
Seven years is a good long time, and it sounds like you are certainly on the right track.
Please keep in touch! – Denise