CLL Alternatives

My Story

(Please note: This is the long version  of my introduction to CLL leukemia.  For more pointed (and short) articles about nutrition, supplements, lifestyles, causes, and so forth, click on the Categories on the right side of the blog page. )

My Story. In 2001, I was forty-six years old, the mother of two college-age sons, celebrating my 25th anniversary with a man I still loved very much, and I was at a good place in my career.  It had been a long time since I’d gone to the doctor, so I asked around and found a female M.D. not too far from home and went in for a check-up and a CBC (complete blood screen).

The answering machine. When there was a message from the doc on my answering machine a few days later, I was uncharacteristically unworried.  Silly me.  I was pretty certain she was calling to tell me that my cholesterol was high and it was time for a statin drug.  I had no interest in statin drugs.  Still don’t.  I think they’re nothing more than a poisonous profit center for Big Pharma, who is constantly trying to find common “abnormalities” that they can “treat” and therefore make billions.  So I actually waited a day.

The message. But it wasn’t about the cholesterol, even though it was on the high side.  It was about my white count.  I had too many white blood cells, and she wanted me to come in again and get tested the following week to see if it was a passing infection, or if it was still high.  I didn’t freak out.  People get infections.  I was kind of annoyed, actually, at having to return to the doctor’s office again so soon.  I have a real problem with paper dresses and the smell of alcohol.  Not to mention sitting still while a stranger touches you, and then another stranger pokes you with a needle.  Not my thing.  I was expecting a five-year reprieve.  Silly me.

Back to the lab. So I took my sweet time and went in the next week with a chip on my shoulder, rather than having the proper amount of worry.  I gave an arm to the technician and turned the other way.  I don’t like seeing anyone’s blood, especially my own.  I did my ironic thank you to the technician who’d just inflicted minor pain on my inner elbow, packed myself up and went home.

Time to worry. As the days passed, I started to worry.  Finally.  When it was too late.  I called the office, but the doctor never returned my call, even though the receptionist told me that the results were in.  I fretted and waited another day.  But no call.

Calling the doctor. The next morning, I called again, and insisted on talking to my doctor, who still didn’t have the cohones to call back.   I called later in the early afternoon, and said that I NEEDED the results.  That I would talk to ANY doctor who would call me back and let me know the results.  A short while later, doctor number two, another young female, gave me the call. She told me that my white count was still high and that I should see a hematologist.  She gave me the number of a medical school buddy that was in the business, and wished me well.

Hematology-Oncology. I called the hematologist’s office, and the receptionist said, “Hematology-Oncology.” I freaked out.  Cancer?  The doctor hadn’t said a word about cancer. I had to make an appointment at the local Cancer Center?  No way! It couldn’t be true.  Someone had obviously made a mistake.  Oh my God.  It couldn’t be true!

See me now! I swallowed hard and got my voice and absolutely begged the receptionist to squeeze me in THAT DAY.  I couldn’t possibly wait another minute to find out WHAT THE HELL I HAD.  Fortunately for me, the doctor’s practice was young yet, and they were able to squeeze me in at 4:00 pm.  Just a few hours to wait.

Cancer Center. The drive to the doctor’s office was no picnic, especially when the big”Cancer Center” letters came into view.  My husband left work to join me, as I was in such a panic.  We sat in the waiting room, a large airport-like arena, with just about as much personality, before we were called in.

Another visit. Another doctor feeling my neck, my armpits, squishy belly, my groin.  And then the first  and only visit to his office, where we could sit in chairs, across the desk, like equals.  “Good news,” I swear he used those words.  Maybe he did his undergraduate work in marketing?  Good news!  “You have chronic lymphocytic leukemia.”  I was looking out the window of his office, seeing the rooftop of an adjacent part of the building, imagining eating on that roof, sitting at an umbrella table, laughing and talking, without a care in the world, wishing I could just go out there right then and leave this ridiculous appointment.

“Don’t worry, it’s like having diabetes.” He said this too.  I’ve since discovered that having diabetes is a horrible thing that affects just about every other part of your health and your life.  But at the time, it was oddly comforting.  People with diabetes didn’t die.  At least not right away.

To tell or not to tell. I went home.  My husband went back to work.  I called my best friend, who wasn’t at home.  I talked to her husband.  I remember it now through the haze of numbness.  I remember telling him that I had CLL leukemia, and I remember feeling his response more than hearing it.  He was sorry, just like everyone was sorry about an Uncle Abe I’d never met, who’d died of leukemia before I was born. I was a dead woman.  I decided right there and then that I wasn’t going to tell anyone outside my immediate family unless I had to.  Until it was obvious.

Still undercover. It’ s been a lot of years now since that day (July 2001), and I’m still undercover about the leukemia thing.  I haven’t had any conventional therapy,”  but I’ve been trying to move mountains with all the alternative and nutritional changes I could make.  As one man I spoke to recently said, “You’ve been skating uphill for nine years.” (I’m editing today; it’s been fourteen years.) I kind of like that.  It makes me feel much more athletic than I really am.  And despite the fact that I still have this leukemia thing – despite all my efforts — it made me feel more successful at it than I’ve felt in a while.

And now this site… At the urging of my husband/mentor/coach/favorite nag, I’ve decided to create this website to put out all the information I’ve discovered — all in one place.  For those of us with CLL leukemia, our second greatest enemy is fear.  The more you know, the less you fear.  Here’s to knowledge and a long future ahead for all of us!

24 Responses to "My Story"

Thanks, Brenda. I am feeling very well. It’s my goal to get all my numbers in the right place. How are your prognostic markers? I’ve read that you can change your DNA, that what you do and what you eat, how you live, can make changes in your health — and this is reflected in your test results. So no matter your markers, it is best to make these positive changes.

Hi Denise,

Wondering how you are doing as of late. Are you still taking LDN?

Hope all is well and you are stable.

Brenda

Hi Brenda,
I’m okay, but I am no longer taking LDN. I found I do just as well without it. Thanks for writing. – Denise

Love the way your initial doctors acted. Mine sent me for a second test then called right away. My initial CBC showed high white count and the second confirmed CLL. He said, “I know you well enough to tell you this over the phone… he had arranged an appointment with a hematologist-oncologist. I didn’t realize what that meant until I saw all the people hooked to IVs. I was confirmed with the 17P deletion and was disappointed to learn during a subsequent visit that the doctor had not heard of the Mayo studies of Green Tea extract. I have been researching ever since. Thank you for the information provided here and best wishes.

Hi Bulbman,
The more I’m at this, the more I realize that, if you’re not going to tow the conventional line, you are really on your own. This is comforting and scary as hell, all at the same time. I’m sorry that you, too, had a very unprofessional entry into this “situation.” How can a doctor not be aware that this is a BIG DEAL and deserves a little time and compassion. My best wishes to you as well. If you’d like to email me directly, I can be reached at info(at)cllalternatives.com. Thanks so much for writing!
– Denise

Hi, I was diagnosed in May of this year….shocking news. I have no symptoms. Stage 0. I’m gathering as much info as I can. Sometimes it’s better to not have known. It’s always on my mind…. That is the worst at the moment. So comforting to have this website. Thank you for this. I am meeting with a naturalpathic oncologist Oct 8th and would be happy to share info

To our health
Teresa

Hi Teresa,
I also used to feel that I wished I didn’t know. I, too, was at stage zero when diagnosed. However, in the long run, this gives you lots of time to deal with it and learn how to maintain your good health. And at stage zero, you really are “enjoying” good health. Feel free to email me separately for emotional support, if you like. I totally understand what you’re going through. It’s hell. However, the truth is that you are going to be well for a long, long time. And it’s even possible for you to get past this and not have it as the focus of your health. That’s where I’ve been at for a few years, and I’m very grateful for that. – Denise
cllalternatives @ gmail.com (with no spaces)

Hi Teresa – I have a simple situation and just want to learn what I can do. The medical people have nothing to offer until later stages. Perhaps we can use email to share more details about practical things.
Eric

Hi Denise – Just found your side and read your story. I like your attitude and contributions to our understand of this condition and things that help. The two support groups I found online were completely dedicated to discussing late stage treatments – chemo – and general expression of good cheer to get through it. There does not seem to be a place to discuss anything that a person can do for himself. All the best. Eric

Hi Eric,
Yes, we can discuss with private email — or by posting on this site. When we post, it stays up here and then when others with the same problem (CLL diagnosis) do a search, they can find what we’ve already written. That said, if you’d like to email me privately, my email address is cllalternatives @ gmail.com (no spaces)
I would love to hear more about your CLL story. Wishing you good health! – Denise

Hi Denise

I read your blog, I have been diagnosed last Tuesday with CLL, after reading your story it was the same for me almost to the letter, looking out the window as well, I felt exactly the same as you.

I am trying to absorb as much information as possible so I understand, I want to do everything that will help my body and like you hope I can beat it.

I did ask why isn’t stem cell offered straight away as a cure for CLL as I can’t see why watch and wait is logical. I don’t think I have symptoms but probably do, I’m just not sure as I feel reasonably well.

I had a bad elbow for weeks which still is painful, I have a sore prickly heat occasionally but that is really all, I may be a bit lethargic at work but my mind is in this all day every day, I’m not sure if I am looking at anything thinking is that CLL or could my elbow pain be normal pain.

I am very interested how I came to get CLL! I’m a builder in the uk, I was told that handling treated timber etc paint, glues, diesel fumes, petrol etc probably brought it on. So many people are getting this illness there must be information that governments aren’t telling, a bit like smoking and asbestos was covered up in the 1950s-60s, probably so corporations don’t have to pay compensation.

Enough for now, I will follow your blog regularly.

Regards

John

Hi John,
So sorry about your diagnosis. Obviously, I totally understand. I also understand how you are looking for reasons for the diagnosis (a good thing to do), and thinking that any ache or pain is your CLL (a bad thing to do). It turns out that people with CLL have normal aches and pains, just like everyone else. For a few years I had pain in the back of my head, even had an MRI and worried it was the CLL or maybe some brain cancer. (Yes, I used to be a grade-A worrier. 🙂 They couldn’t find a cause, and even the hematologist said it “could” be from an enlarged node I had on that side of my jaw line (not visible, but there, still there, as a matter of fact). This made me CRAZY.

Somehow,I overcame these head aches, and years later I discovered I had Meniere’s Disease (not fatal), and one of the symptoms could be pain in the back of the head! Thankfully, I still have that under control. Whenever it flares up, and it does, I clean my ears with ear drops from the drug store and get better. Sorry to ramble, but the message is: don’t worry about any ache or pain you would have ignored earlier. It’s probably nothing!

About the stem cell thing…they ‘do’ have new and improved conventional treatment you should look into. See http://www.patientpower.info/chronic-lymphocytic-leukemia

But honestly, I’ve been at this for going on 15 years with zero conventional treatment, and I think it’s the better way to go. It’s all about making your body as healthy as possible and feeding your immune system. It hasn’t been easy, really. But you can learn from me and from others, and I’ll be glad to communicate with you always. And, truthfully, it’s good to know that the conventional treatment is there, if you need it. (It’s my personal goal to never need it, but like I said, I’ve been at it a long time and have some confidence in this.)

I apologize for not posting more frequently on my site, as I’ve been improving. Improving! After 14.5 years, my numbers are getting consistently better over time!!! Amazing. I’m so busy with my regular life. (Part time office work, part time writing work, grandchildren and elderly mom, I’m kind of busy.) But I do owe it to people like you to put out all my good results at this time.

So please take heart. You might very well be just fine. And there are many out here to blaze a trail for you. Thanks for writing and please write again and tell me more or ask questions, whatever you like. I ALWAYS make time for people who write. Just like I make time for family.
All the best, Denise

Hi John!
I find it very interesting that you had a painful elbow for weeks before diagnosis because this was my experience too, and yet I didn’t think it had anything to do with the CLL.

Hi, I was diagnosed with cll just over a year ago. I would like to know about how much green tea, red wine, or whatever you have been doing that may be keeping you from treatment. Also curious as to you wbc counts. My high was the first of this month at 173, but a couple weeks later it went down to 149. I am scheduled for monthly blood tests and Dr. Says treatment is coming. I would love to not have that happen if there is something I could do diet wise that may help. Anxious to hear some tips from you. Thank you so much!

Hi Gloria,
I’m sorry about your diagnosis. I’m wondering if in addition to your WBC (173 ‘is’ high, but you did drop down to 149 in two weeks) do you have any symptoms? Why does the doctor think you need treatment? Is it for the WBC alone?

I’m glad that you are considering natural things you can do for yourself, such as diet and supplements. The good news is that even if you do have some treatment, the diet and supplements will help you with your general health. I wish I could give you a blueprint, but unfortunately, not everything works for every person (just like the conventional treatment; it doesn’t work for everyone) However, there are some things in general that will help.

1. vitamin D3. I would start taking 10,000 IU daily. Ask to have your vitamin D hydroxy level tested. If you have cancer/leukemia, the optimal level is 70 – 100. Mine was 19 when first tested years ago. There have been studies about how vitamin D helps reverse cancer. (This is a simple one.)

2. This one is a little more comprehensive. And that is to stop eating any burnt food — particularly meat, but really anything darkly cooked, such as toast. There are articles (one is on this site) about how eating burnt food raises your white blood count. I saw a nearly immediate reduction in my WBC when I start this diet back in 2013. MY WBC went down from 47 to the low 20s, and stayed there for two years, until it started to lower again. My last count was 17.3.

3. Stay away from all toxins. This means avoid food that is not organic. This means eating home a lot, most of the time. Sometimes to eat a variety of vegetables, you have to eat conventional, and that is okay. But try to eat as little as possible of food affected by pesticides, etc. Also use organic shampoos, oils on your skin (instead of creams that have multiple ingredients, etc.) Filter your water at home with an under-the-sink filter. Clean your house with white vinegar, or peroxide, or baking soda. There are many online tips about how to use these natural (and inexpensive!) products. Once you stop using the toxic stuff, you’ll be amazed how nasty it smells when you come in contact with it at a later date. Oh, also organic makeup, soap, etc. Anything that comes in contact with you and your body. laundry soap, etc.

4. Get enough sleep! I know it sounds simple, but go to bed early and give yourself 8 hours a day to relax. Your body will thank you. This is one of the best things I’ve done. Go to mercola.com and look up sleep hygiene for ideas for sleeping well.

If you get started on all these things, write me again, and I’ll give more suggestions. Start slow. Believe it or not, you still have time. CLL is generally slow. Talk to your doctor and see if you can continue delaying any treatment. the longer you delay, the longer you have to start stablizing your health without un-natural, conventional treatment. If you do require conventional treatment, ask about non-chemo treatment. It’s out there, and i believe it’s less harmful to your immune system. Ultimately the goal is to build your immune system, and unfortunately, most of the conventional treatments knock it down.

Please write again with questions, or to tell me how you’re doing.
Wishing you the best of health! – Denise

Hi Denise,
I’m a very young CLL-er. Recently diagnosed. Would you be so kind as to chat with me over the phone? I’m 32, two babies at home, and frankly need a bit of coaching with a few of your ideas. If you would be open– please email me at ssmith721@yahoo.com and I can give you my phone number :). Love your blog!

Hi,
I am 48 years old and was recently diagnosed with stage 0 CLL.
I can not stop thinking and worrying about it. It is constantly on my mind. I’m not sure what to do about it. I feel as though I will never be truly happy again. Will this feeling eventually go away?

Hi Kami, I am so sorry about your diagnosis. I know that it’s devastating. I cannot see into the future, so I don’t know for sure when you will be happy again, but i do know that you will be. In my own experience, i was able to enjoy my life again once i felt I had some control. For me, that started when I became Macrobiotic, back in 2005. (No, I’m not suggesting that you become Macrobiotic. As a matter of fact, I am no longer classically Macrobiotic.) But what it did for me (going to learn how to cook and how to survive, at a week-long class in Massachusetts) was that i could, in fact, control my health by what I did. This was a huge revelation!!! It was the beginning of a new phase in my life.I was no longer crying at night and terrified and worried constantly. I really feel for you!

The gift of CLL, is that by definition it is “chronic,” meaning that it is a slower-going disease. This gives you the gift of time. Educate yourself! Read my site. Look up “David Lingle CLL” on Google and watch his video. (He was interviewed by “Chris Beat Cancer.” Look him up, too. There are many inspiring stories of people who have “beat” cancer. Watch them. Read up on them. See what they’ve done. There is also CLLHealed.com and CLLDefeated.com. These are both web site testimonials of men who have prevailed over CLL via alternative means. Try things out. Most, if not all, of the alternative treatments/modalities do no harm! So it doesn’t hurt to try them!! Read up and make a plan. You don’t have to do it all at once. Make changes at your own pace. But once you are DOING things for yourself and your health, you will have less of the terror and panic.

Also, keep in mind that in reality, you don’t have to “beat” cancer. I’ve been at this for 15 years now (by the end of June 2016) and I still “have” the diagnosis of CLL. But I live a pretty normal life and I’m confident of living (ie not worried about my health or survival on a regular basis). I eat at home most of the time, and my husband and I spend an inordinate amount of time preparing foods. (Fermenting, slow cooking, soaking and dehydrating nuts, etc.) But you don’t have to learn this all at once. I certainly did not. But get books on the Paleo Diet. Look into the Weston Price Foundation. (They have local cooking classes and you can buy books from them or on Amazon.) I would get started as soon as you can and you will feel less like a victim when you start to take action.

One more thought… the conventional medical field presents us with more possibilities for treatment, some even offering the possibility of cure! This is light years ahead of what was out there 15 years ago!!!! At that time, the researchers and pharmaceutical companies patted themselves on the back if life expectancy was increased by 50% from 6 months to 9 months of extended life from treatment (treatment being body-debilitating chemo). It was dreadful and shameful that that was what they had to offer. Personally speaking, I hope to never need any conventional treatment, but it’s good to know there is a safety net out there as well. Put “chronic lymphocytic leukemia” in on Google Alerts and get daily emails about what’s going on out there. You will see some obituaries, which is hard to take. You will find a tiny amount of alternative information. Most will be pharmaceutical company PR, some of it happy financial info for their stockholders (which comes across as cold and crass when its your own life on the line), but you will also see reports of true pharmaceutical success stories. Like I said, they are improving on the CLL front.

Last, but not least, I’m here for you if you’d like to email me directly. I’m at cllalternatives @ gmail.com (no spaces so the robots can’t find me). My heart is with you Kami. You can do this, and I know from personal experience that your efforts WILL make a difference!
Sending love and healthy thoughts your way!!! – Denise

Just hit my 12th anniversary as untreated. Will be following your blog. Thanks!

So glad to hear from a 12-year survivor. Please share your story to help others!

Denise,

I posted this on another persons site Eric and also sent you a email. I thought I would post it on here also. I am so desperate to connect with people that want to take care of their immune system naturally while on “wait and watch”. The mental part of this journey is just as stressful as the diagnosis.

Short version:

I was diagnosed with CLL two years ago and I am in stage 0, but with the WBC going up every six months at my Dr. follow up visits.

I was wondering if anyone knows of any Cancer Hospitals either in PA or New York or New Jersey or Baltimore, that would be open to treating you with other medication other then chemo and also treating you with supplements and exercise etc. if you are told that you have to start treatment because of your numbers or markers?

Right now I am trying to be aggressive with my own ideas of being smart as to being around people with colds or flu and being in crowded places, washing my hands all the time and using hand sanitizers when in stores etc. I am also taking Vitamin D3 but only at 1,000 IU a day and Vitamin C at 1,000 mg. a day. The drs. do not seem to think that the vitamins work well. They just want to sit around and “wait”. I find this so depressing and scary that a dr. would not try to teach you how to take care of your immune system while on “wait and watch”.

Any suggestions from anyone would help me mentally. I find this is a everyday battle with myself to pretend I am happy so as not to upset my family around me.
Martha Hurlock

I hope your post starts a discussion. First, I would up your vit D3 to 8000 or 9000/day. And get your vit D hydroxy test done to see your level. If you have cancer, you should try to get that number up to somewhere between 80 and 100. (Over 100 is considered unsafe.) Also, my alternative doctor recommended 3000 mg of Vit C, taken 1000mg/meal. Rather than cancer hospitals, I would seek out alternative MDs and other practitioners. Do a Google search on “alternative doctors,” “integrative doctors,” “holistic doctors” near you, and check them out. I’ve learned something from each practitioner I’ve visited. Also consider seeing a nutritionist and other natural specialists. It is a search, and at stage 0 you have the luxury of time.

Also, as I’ve mentioned in another post, bone broth soup and natural probiotic foods (saur kraut and other fermented veggies) also healp to heal the gut and boost your immune system. A supplement I take is Peak Immune by Daiwa. I buy it at Luckyvitamin.com. It’s cheapest when you buy it on an auto-reorder basis. It helps to activate your natural killer cells (part of your immune system). I’ve found time and again that it increased my neutrophil count (an immune marker). It is also available at Amazon and iHerb. (I don’t have affiliate links. I sell nothing. this is strictly an informational site.)

Hi Denise:
I have a couple of concerns. 1) What about bruising of the skin that can appear on one’s skin. I remember when I was in high school, my mother was diagnosed with CLL (late 1960’s). She started to have bruise marks on her body but I can’t recall if it was at the later stages of CLL or earlier. Do you know what it means and what one can do to alleviate it? I had a bruise on my inner thigh but it disappeared after a few days. Now it appears that I have one on the back of my neck. Secondly, I agree that a good night’s rest is very important. However, I have recently been dealing with sciatica. Unfortunately, it worsens at night and interferes with my ability to go to sleep. Consequently, I’ve had to take an Ibuprofen (800 mg.) to lessen the pain so I can get some rest. I’m also doing the recommended stretches of the affected muscles which helps also. I don’t want to continue taking the Ibuprofen but the pain wins out. I know chronic inflammation is the “enemy.” I take Bosmeric twice per day which has the curcumin. Any suggestions?

Hi Marsha,
I’ve had a lot of bruising, but thankfully it’s not been an issue for several years. This can be a sign of advanced diseases (with emphasis on the word “can”). It can be the sign of low platelets, a blood-clotting element of our white blood cells. My best results for improving platelet count is to eat chicken skin. I listened to my son, a trained Nutritionist. Yes! After years of hearing about how unhealthy it is, it turns out that chicken skin is chock full of things that can improve platelet count. I also now drink bone broth soup about five times a week, and this might also be why I’m having less problems with bruising. This has collagen, and has to do with connective tissue. (Not claiming to be a scientist here; just telling you what works for me.) I also put Great Lakes collagen in my morning smoothie. The only time I bruise, as a matter of fact, is when I’m quite away I’ve bumped into something, which does happen often enough, as I’m a klutz. (Even then, I often do ‘not’ bruise, even after a big bump.)

About your sciatica, have you tried Bromelain? I keep NOW brand on hand and use it as an inflammation/pain reliever. I take many more times the dose recommended, when in pain. I’ll take 3 at a time, 3X/day. I do this only for a few days, till pain has subsided. I don’t know if this is a problem on a long-term basis. You might have to do more research to find out. (Or even call NOW and ask them. I’ve called them before with different questions.) Sciatica is tough. My husband had it and after really wanting surgery he found that exercises and deep massages (from a trained massage therapist) got him well over time.

I hope this all helps. Please write and let me know how you’re doing. – Denise

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