CLL Alternatives

CLL: Facing the Fear and Loneliness

Posted by: Denise on: March 31, 2019

Finding joy in everyday life! Denise with grandchild #3.

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!

24 Responses to "CLL: Facing the Fear and Loneliness"

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 ( 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.

Hi Terry,
The mushrooms sound perfect! Be well and please stay in touch! – Denise

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 ( 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.

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 (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:

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.


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.

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 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

This is a fantastic post. Very thoughtful, empathetic and instructive.
Thanks for all you give to this CLL buddy.

You are so welcome, Mike. Thanks for writing!

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 🙂


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,

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

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

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,

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


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,

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
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

Forgot one, what brand do you use to clean your clothes in the washer machine?

Thanks Denise! You’re the best!


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

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,

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

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,

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

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