This is my first post. I wanted to share a bit of my story in the hope it may help someone.Was originally diagnosed with CLL in Oct 2009 and went through the gamut of natural so called cures. Removed all my root canals in July 2012. Prior to that procedure I often had dark phlegm from my lungs. At that time my WBC was 58. At the same time I had high dose injections of vitamin C. All this dropped my count to 43, but with time, all went up gradually again. Sept. 2014 I had a 85 count but at the same time was put on statins and high blood pressure medicine by my family doctor. This actually dropped my count to 64 but also dropped my platelets from normal to 120, so I stopped these meds. April 2015 at 86 WBC, I started an ARTEMISININ protocol of Dr. Singh which dropped the count to 79. However it hurt my Neutrophiles so that was stopped. All progressed gradually and in March 2019 my glands were very swollen and at 106 I started getting very bad night sweats. By June 2019 my RBC started falling and I was getting anemic. I then tried taking CBD oil for 3 months but all that really did was to drop my platelets from 160 to 99. When CBD oil was stopped the platelets went back to 127. In October 2019 my oncologist said I needed to start treatment. We chose Ibrutinib. Within 15 days my glands went to normal and I was feeling great, tiredness and night sweats were completely gone. I thought it was miraculous. However at the end of December I started to develop Tachycardia and then Arrhythmia, something I had never experienced before. I was prescribed medication for this from my Cardiologist. However, I must share what helps me personally the most is a long walk. We live in hilly terrain by a lake and my wife and I take a hour walk everyday of about 6 kilometers. Although the alpine setting is strenuous it seems to reset the heart at the correct pace. I find I have far less episodes when we walk daily. I don't know if this would work for everyone but it is worth giving a try to those who have similar issues and have approval from their doctor. Another thing that has helped my wife and I immensely is having a smoothie with fruit, avocado, spinach, and 0% plain yogurt every morning with a bowl of oatmeal afterwards. My MD actually called me to ask what I was doing to have my LDL cholesterol drop in half. We have been doing this for approximately two years.
Hi Charles. Welcome! Good information and advice. I have tried many of same things - IV Vitamin C (with mistletoe), CBD, and Artemisinin... among other things. I also had miraculous results from ibrutinib... but also arrhytmia and tachycardia. So was recently switched to Venetoclax after 2.5 years on ibrutinib. I agree with you about importance of walking. In fact I better go take mine if I want to get one in today.
Hi Kim! Was the switch over to Venetoclax difficult? Was the Arrhythmia and Tachycardia occasional or continual? I am very interested to hear of someone that had the same symptoms as mine. I consider myself in good physical shape but the Tachycardia just wipes me out and makes me extremely tense. And I also wonder how long I can tolerate it.
There are risks with prolonged tachycardia - particularly if it includes arrhythmia such as atrial fibrillation or in my case atrial flutter. Clots and strokes become the risk. Mine was occasional not continuous. But it would last for hours at a time, and I would feel pretty weak and terrible. I had no strength during those episodes. I can tell by my dumbbell ability. Your body is literally oxygen-deprived in AF episodes.
The switch to venetoclax seemed easy to me. There is a ramp-up protocol which required multiple overnight trips out of town (to Vancouver). But it was all done in my case as an out-patient, because I was not seen to be at much risk of tumor lysis syndrome because lymphocytes so incredibly low from the ibrutinib. So no time spent in hospital, and no IV hydration or intervention during the ramp-up.
I stopped ibrutinib March 4th when I ramped up to full dose of Venetoclax. And I have not had any episodes of atrial flutter since. I have had a few minor stints of premature ventricular contractions (PVCs). It's useful to learn the difference because they both feel arrhythmic, but the PVCs less so. And the AF is definitely more serious.
I have a feeling I won't have more problems with AF now that I am off the ibrutinib. And of course Venetoclax offers the probability of a drug-free remission that may last years. Ibrutinib does not.
Another alternative is acalabrutinib, which may not have the cardiac effect of ibrutinib. Good luck to you!
I appreciate your feedback Kim. Makes me feel more confident about other alternative possibilities down the road. Prior to starting the Ibrutinib I purchased the EMAY ECG monitor which was actually very helpful in diagnosing what I was feeling. Also allowed me to print charts which I could show to the doctor as frequently the ECGs taken at the hospital are normal.
Glad to hear the transition to Venetoclax worked for you and all is well.
Gee, I wish I had a home machine like that. For me, it took a trip to emergency before I finally got my arrhythmia documented, which triggered the switch to venetoclax, even though I had been reporting it at every check-up. But as you say, an ECG often won't catch it unless you go in to ER when you are having an episode, which I ultimately had to do. I also wore a 24-hour holter monitor. But nothing happened, so doctor assumed I wasn't experiencing what I knew I was experiencing.
Hello Charles! Thank you for sharing your story! I'm 3 years in and still no treatment, but always wondering when that will change. It's good to hear different perspectives!
Hi Charles and thank you for sharing your story, in particular your blood counts, specifically your platelets and what happened with your neutrophils and importantly your encouraging and disappointing results. Sharing your Lymphocyte count rather than your WBC would have been even more of interest, as your WBC is the sum of 5 different white cell types which all vary over time. From the many different lymphocyte count plots I've seen, your WBC variations were not out of the ordinary for someone with CLL not using supplements. Good to hear you mention the benefit you attribute to walking, given this post:
An exercise pill would be prescribed to every cancer patient worldwide and viewed as a major breakthrough in cancer treatment
Thanks for sharing your story. That’s great you are exercising and eating healthy. I am also on ibrutinib and try my best to walk using my elliptical for half hour at least three or four times weekly. I’ll try that avocado and spinach smoothie.
I do eat lots of fresh organic veggies. I have a large salad bowl and just throw “different color” greens, nuts, tomatoes, blueberries, etc and chopped them up....I add some nice olive oil and vinegar.
I stay away from white sugar and drink lots of water. 😁
That just show how a good diet can help - amazing!
It gives me hope That my newly introduced plant based diet to try & lower my lymphocyte count may help; not sure if it will be of any use but it’s the only control I have.
Hi, Well, prior to starting our smoothie plus out meal breakfast we would have foods such as eggs, potatoes, cheese, baked beans, pancakes etc...
The nice thing about smoothies is that they are nutritious while being very tasty. We add blackberries and a tablespoon of maple syrup to our hot oatmeal. We have never tried adding oatmeal to our smoothie but it may be fun to experiment.
Thank you for telling us your experiences with CLL. I have been W&W (Watch & Wait) for 7 years. Only problem acute fatigue. I have found long walks & a similar smoothie (avacado, spinach, kale, carrot, parsley, mango, pineapple, clemantines & papaya), beneficial for the fatigue.
Also, a Chinese acupuncturist told me to take Cordyceps Sinesis (available on line) as research has shown this can slow down blood cancers and lessen fatigue. Chinese athletes use it for peak performance.
I believe it helps but the resesrch can be checked out on line.
Hi mrtiggs, thank you for the info. I will definitely look into the CS you mentioned. I suppose you already have had your thyroid checked. My wife had extreme fatigue until until she discovered she had a slow thyroid and was prescribed Synthroid which resolved the issue.
"Common side effects of cordyceps include: Increased symptoms of autoimmune diseases. Slow blood clotting (increased risk of bleeding in people with bleeding disorders) Increased risk of bleeding during surgery.
:
Cordyceps has moderate interactions with at least 72 different drugs.
So not a good combination with a disease known to increase the risk of both bleeding and auto-immune conditions, particularly given there are no reliable human studies.
Given the extreme limited availability, (there is very narrow range where it grows naturally) it's accordingly highly expensive, so there are valid concerns about sustainable harvesting. The corollary is that with the lack of regulatory control of supplements in most countries, your chances of purchasing a product that actually contains Cordyceps are rather remote.
Charles, welcome to the forum. I also find long walks meditative and helpful. The alpine view sounds wonderful. For now for me walks around my yard will have to do. We live in the country and are spread out a good bit so I have enough room to roam.
Exercise and a healthy diet as you are on are both good Cll strategies. As to the the natural remedies you have pursued, I can’t see how they have changed the trajectory of your Cll much. It sounds to me you had a gradual rise in your Cll over a number of years until you took ibrutinib which among all the remedies you tried, was the only one that truly knocked back your Cll and the only one proven to do so.
Having one’s Cll count wax and wane some from lab to lab is not unusual. I doubt high injections of vitamin C or root canals had anything to do with your wbc dropping a few points. Mine went from 70000 to 55000 in the week following my diagnosis without any diet changes.
This is not to discourage you from pursuing any natural remedy you want to try. We are all ultimately responsible for treatment decisions we make. I am just pointing out that there is not much science to attribute any of your wbc to any remedy you tried, but for Ibrutinib. Cbd oil is touted to increase platelets. I doubt it had anything to do with your platelets dropping. Had your platelets gone up on cbd oil, I would make the same observation. Cbd oil is touted for so many things it just isn’t proven to do.
I don’t know who Dr Singh is, but if he is prescribing artemisinin for your Cll, he sure doesn’t sound like a hematologist or oncologist, or at least not mainstream.
The only thing I can see in any remedies you tried that significantly impacted your Cll was ibrutinib. I am sorry about the arrhythmia, a known ibrutinib side effect. You might consider discussing acalabrutinib with your doc, a similar drug to ibrutinib which may have less risk of cardiovascular side effects. Venetoclax would be another option.
Cytogenics and IGHV mutation status have the most impact on the trajectory of our Cll. If you know yours and can share it, that can be helpful to others. I am jealous of your alpine setting for your walks. That sounds awesome and very good for mind and body.
Thank you for your feedback Cajunjeff. Yes, I do agree that the only thing that significantly impacted my Cll was Ibrutinib. It was rather miraculous. As we are aware there is a gradual progression in the disease, my sole reason for trying the alternative therapies was to slow it's advancement. I think this can help both psychologically as well as physically. It is nice to think that you have some sort of control over the disease if only slight. The important thing, I feel , is not to try a snake oil that has been proven to harm or provide absolutely no effect. 😉 I have no idea of my Cytogenics and IGHV mutation status but will ask my oncologist. As for Dr. Singh, I was able to contact him at the university of Washington and he was kind enough to share his research and provided dosage for the treatment. He told me he was having good results with some types of cancer. As I mentioned it did not help me in any great way.
The site you referenced for more information on Dr Singh touts itself as "The ultimate one-stop source for information about alternative cancer treatments, therapies and clinics." Several recent papers summarising life expectancy comparisons on large cancer population studies have shown that people who take the alternative route statistically have considerably worse outcomes compared to those that accept proven treatments. So it was good that you accepted your oncologist's recommendation to start treatment and chose Ibrutinib.
Actually Neil , to make things perfectly clear, I am well aware of the statistic regarding treatment with alternative medicine and would not advocate it to anyone. I simply gave you the history of what I tried in my journey. It is very evident ,looking at the numbers , that there was no great benefit in what I tried and that nothing worked like Ibrutinib. Secondly, I was not recommended Ibrutinib, I requested it from my oncologist after doing research as I believed it would be the best choice of treatment. My oncologist agreed and requested approval from the government as they are paying the bill. Many are still going the traditional chemo route. However, I do believe that lifestyle choices can improve our lot . Not having any medical training, I would like to stay informed. That is why I joined this group. Simply to get feedback from interesting people like you. Thank you for your feedback. 👍
Good to hear and I've corrected my reply accordingly. It's when people with cancer follow the alternative route and stay with it when the time for treatment arrives, that they find to their cost, that alternative treatments don't work as well as approved treatments.
I too looked at what I could do to extend my time to treatment and found that the best evidence was for EGCG from green tea alternating with turmeric. Living in Australia, I'm far more fortunate than those living in most other countries, because at least we have our Therapeutics Goods Administration vested with the powers to try and ensure that supplements registered for sale in Australia have at least some degree of evidence behind the claims made by manufacturers and poisonous herbs are banned from importation. Unfortunately the TGA is underfunded to do more than random inspections, but thankfully we can look at a supplement container for a TGA registration number and know that the supplier has at least registered what's being sold and lodged details of the manufacturing process with the TGA for a possible audit.
I've since been disappointed with the results shown for turmeric in a clinical trial healthunlocked.com/cllsuppo...... Pharmaceutical grade EGCG is no longer available and one of the Mayo Clinic researchers, Dr Neil Kay, advised those with CLL not to buy green tea capsules, because it couldn't be guaranteed what was in them. There have been a few scandals in the USA and elsewhere with supplement suppliers being caught adding prescription only drugs into their preparations, cheaper substitute herbs in their preparations and so on: healthunlocked.com/cllsuppo...
Thankfully, we now have a far greater choice of very effective, non-chemo drugs than existed 5 or 10 years ago!
Here's a pinned post on what our community members have found does work:
Sadly, lots of things drop platelet counts or reduce clotting effectiveness, including supposedly EGCG. Yet when I stopped taking EGCG before starting my trial, my platelet count continued dropping, all the way down to 29. Surprisingly, I needed a couple of red blood cells transfusions to counter worsening anaemia until my bone marrow infiltration cleared enough to counter the bone marrow suppression from the drugs I was taking, but not platelet transfusions and I was on IV antibiotics (which also can impact platelet production) for serious infections at the time.
I don't know of any good natural ways to lift platelet counts with CLL, when production is limited by bone marrow capacity, rather than lack of adequate nutrition. Your spleen performs a function of providing emergency supplies of neutrophils, platelets and red blood cells when you stress your body through exercise (good stress! ), but then they have to be replaced by your struggling bone marrow. I've personally observed my neutrophil count increase through strenuous exercise done on the way to a blood test, but ceased doing that because it gave a false indication of my degree of neutropenia, plus I was concerned at the probable subsequent post exercise drop. Both platelets and neutrophils have a very short lifetime in our blood - a matter of days. Our bone marrow works hard constantly replacing them.
The prescription drugs romiplostim (Nplate) and eltrombopag (Promacta) can boost platelet counts, but are rarely used with CLL other than for the treatment of ITP. If your platelet count drops below 100, it's one of the triggers for starting treatment, though the latest iWCLL guidelines allow for lower stable counts. During treatment, dangerously low platelet levels are managed through platelet infusions. Typical guidelines are to prescribe infusions if your count drops below 20 and you have an infection or below 10 otherwise.
Neil
You are a wealth of information Neil. Thank you for all this. My platelets have dropped to 120 and I am a bit concerned. By the way, are you aware if infrared saunas can help individuals with CLL?
Diagnosed CLL - B clone, Zap-70, and CD30 NEGATIVE... Lymphocytosis always hovered around 4,000 upwards of 6,500..... classed borderline Stage 0-1 Rai in August 2017. During the beginning of Houston, Texas' several month/early 2020 Covid lockdown, I got stuck ashore between ships, and hunkered down guarding our sailors union from my old camper van/mini motorhome in their gated parking lot... First week of April, being on dwindling funds to survive, and no health coverage, I started taking some of the 100mg Artemisinin capsules I'd had lying around for a couple of years, as it had reportedly shown interesting action against SARS-1 fifteen years earlier, as well as antiviral action against a few other virus... Covid 19 is sometimes referred to as "SARS-2 Covid-19"... I discontinued the capsules in 5-6 days after my fingernails on my small fingers started turning dark, and separating from their nail beds... I came back from the sea June 1st (got a couple of months shipboard work in Baltimore, Md. and Portsmouth. New Hamphshire) and then promptly did my periodic C.B.C. panel when I flew back to Houston..... To my utter astonishment,... my peripheral blood presented NO LYMPHOCYTOSIS..... In mid July, my lymphocyte count,... while still within the normal range,... was creeping up, so I figured *What the heck, the Artemisin cat is ALREADY out of the bag, so why not go with the flow, and just start taking it again... I have, at this time (late April 2021) STILL NO LYMPHOCYTOSIS PRESENTING in my peripheral blood..... This is OVER a year now of NO LYMPHOCYTOSIS, and NO RECURRENCE of the fingernail issue, or any otherside effects... C.B.C., Hepatics, Lipids, etc. were all EXCELLENT as of one month ago... I feel as good as ever, and am now engaged in strict dieting as I dive into rebuilding my old sailboat here in a yard in Pasadena.,Texas
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Aetna has approved me for Zanubrutinib 80mg Tabs, 4 per day, either 2 twice a day or all 4 at once. 
Follow up on low platelets and stopping Acalabrutinib 
6 Years W&W...
Bendamustine/Rituxan
