I've just come across an article on a remarkable, well-documented, case of a younger man with CLL who, over time, achieved complete remission without drugs. Here's the link: ncbi.nlm.nih.gov/pmc/articl... * I hasten to add that this is but a single case, and I'm not recommending that anyone replicate his non-drug-related treatment plan. On the other hand, I'm most intrigued, and personally plan to engage in some serious research to determine whether I might follow his plan, with or without modification. I pray for all good people: God grant you all with peace of mind, freedom from pain and suffering, and success in all your endeavors, now and forever. Amen.
Documented remission without drugs: I've just... - CLL Support
Documented remission without drugs
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Pogee
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AussieNeilAdministrator
There is around a 1% chance of a spontaneous remission in CLL, with several case studies published, covering around 10 subjects in total that I know of. In all but one case, those experiencing a remission were IGHV mutated, as was the subject covered in the paper you referenced. The subject concerned also had his spleen removed, which at the time was an accepted way of reducing the CLL tumour burden and slowing progression. I've posted about my research on this here:
healthunlocked.com/cllsuppo...
Neil
Jm954Administrator
This individual case is well documented both in the paper you cite and in his own story which he has marketed very successfully. AussieNeil I'm sure will want to comment but I would make a few remarks.
The first is that severe haemolytic anaemia, secondary to CLL, can kill patients and kill quite quickly, sometimes within a days without treatment so he was fortunate to survive this episode. His approach is therefore not recommended.
Secondly, he did not have 'directed anticancer treatment' as it states in the reference - he undertook a course of 'alternative treatment' of mushroom and green tea extracts. We do not support 'alternative treatments' on this site because they can deter or delay patients from accessing proven treatments that work. We are an evidence based site and our posting guidelines specifically prohibit the promotion or marketing of alternative treatments but we do support complementary therapies.
There are a number of posts on the site regarding green tea extract and other complementary therapies that you should be able to find using the search function.
Best wishes
Jackie
Hi how can I find information for this story you say is well documented. I am not looking for alternative therapies, but do believe our mind is a key factor. When I was diagnosed, I was at stage 4. In the first seconds of infusion of Obin, I ran away, as the nurse had not waited long enough for the pre-drugs to work (I found out later), and I could not breath, my pulse shot up, my face turned red...and it was not panic as I had not noticed nurse turning on the flow. So I simply did what was healthy for 4 months -- used some suggested remedies but cannot be sure what any one of them did. But 4 months later upon return to the therapy, my blood tests did not show any further progression from the original test. So somehow that stage 4 did not put me at death's door. But of course I do not recommend anything here. But I am just very interested in reading the story.
It's not uncommon for people to react to their first infusion of a monoclonal antibody, especially with Obintuzumab. If you had stayed they could have given you something to manage your reaction.
Many people live for years without treatment at stage 4 but unless you are monitored by a doctor, it's probably not safe as CLL can and does kill people even with all the excellent treatments available.
As cajunjeff says, you cannot base a treatment (or non treatment) choice on the marketed story of 1 person and this site does not permit the promotion of alternative therapies because they can deter or delay people from accessing the recognised treatments when they need them.
Clinical trials are designed to find the best possible treatments for people with leukaemia and no new drug gets approved and to market without the evidence from those trials
People occasionally do die of the side effects of treatment but those that need treatment would all probably die of CLL without it.
Jackie
I know all this. You have misdiagnosed me. Am not into alternative therapies. IF I were, i would not be able to afford them.
I don't see any diagnosis by JM954, just sharing relevant background to what you've shared of your experiences. Also remember your first post was titled "Alternative Treatment" healthunlocked.com/cllsuppo... and you've explained understandably why you were interested back then in non conventional treatments. As I explained back then and JM reiterated above, you were not adequately prepared or monitored for what is a common occurrence with Obinutuzumab treatment. I had a severe infusion reaction with my first Obinutuzumab infusion too. I also lasted in stage 4 for nearly 11 years, so it would be have been interesting to know why your oncologist considered you needed your first treatment.
With respect to the case study you are interested in, as cajunjeff pointed out earlier below, the principle author of the case study is the co-author of the book which the subject of the case study promotes for his private business and his associated network (including the co-author's business). Hardly independent. Imbruvica has a far, far greater success rate, with patients approaching 10 years experience on maintenance therapy. The case study dates back 30 years, when we didn't have anywhere near the treatments available now. I was stunned to find that splenectomies were a recommended treatment for CLL back then. Nowadays they are only occasionally used when other treatments for AIHA fail, not for CLL per se. I'd encourage you to maintain or improve your fitness and diet as the book recommends, but can't see the value of doing anything else if Imbruvica is working for you.
Neil
Thank you for your timely and comprehensive reply. I'm actually on Imbruvica, and had been tolerating a lower, 280mg, daily dose for more than three months. However, in the last couple of weeks I've developed classic Imbruvica-related symptoms suggesting titrating toxicity. I just spoke with my oncologist today, who advised that I stop taking it. However, my readings suggest there may be a relatively high incidence of Imbruvica withdrawal syndrome. Therefore, I've opted to take a 140mg dose in the morning, instead of 280mg at night. I also substantially increased my water intake, had a small omelette in the morning (which I used to take, but had discontinued), and have taken my vitamins later in the day, instead of in the morning. Today, for the first time in quite a while, I've been relatively free of virtually every Imbruvica-related issue I had been experiencing. Just sayin'.
Hi Pogee,
You were right to be concerned about a CLL flare up when you withdraw Ibrutinib, especially if you have been taking it for less than a year.
I'm glad you've been able to control your side effects with a reduced dose and you may be able to increase it again at a later date. The side effects are definitely miserable and I still get some after nearly 5 years of Ibrutinib.
All the best
Jackie
I'm sorry to hear about your side effects. What I'm reading indicates that after each occurrence the dosage should be reduced; first from 420mg to 280mg, then to 140mg, then discontinued. However, there are a couple of important things to consider: 1) According to what I've read, if you go back on Ibrutinib the withdrawal symptoms apparently disappear; 2) there may be a range of vitamins, supplements, spices, and foods one takes that are potent or moderate inhibition's it ors of the liver enzyme CYP3A4, which has the effect of increasing the potency—and toxicity—of Ibrutinib. Hopefully, your condition is improving.
Most side effects of Ibrutinib reduce dramatically or stop after a while and mine are certainly better than they were even 2 years ago. The exceptions are the cardiovascular side effects, AF and hypertension which get worse without intervention.
There are a number of potent CYP2A4 inhibitors which it's important to avoid. There's a list here: pharmacytimes.com/publicati... . Some common items there so it's good to be aware as you are. The main problem is that we have no way of knowing how much these items are affecting our levels. Some can increase them by 5X what they should be which is, without doubt, dangerous especially with regard to the bleeding risk.
Jackie
It is inspiring to hear of your 11 years of remission. Not sure what age category you are in. I was diagnosed at age 73 as my white blood count was up which led to other tests. Doctors consider success of imbruciva primarily in its ability to keep CLL at bay. A clinical trial director told me "you (meaning anyone being treated) will probably die from something else before the treatments stop working." I guess those other illnesses are mostly either age related or side effects of the drugs.
I feel that there is not enough interest by researchers in the side effects of new treatments and accompanying nuclear scans and such.
Countless researches and trials aim to extend the remission period. But I wish there was more focus on side effects. (I have heard researchers also say this. ) I've experienced, for example, cramping, extreme fatigue, and lately scary arrhythmia. These symptoms come and go but overall I never feel totally rested. White cell counts are good
I'd prefer treatments that do not require daily dosing so body can outlive side effects. It is still early days with new targeted therapies.
We've had members recently mentioning lasting in Watch and Wait much longer than me, with a recent mention of 25 years and continuing 
.
With regard to your concern about side effects and radiation from scans, one advantage of seeing a CLL specialist is that they only use radiology or bone marrow biopsies when all other less risky assessment approaches are unable to help them work out what's happening, or if these are a trial condition. The CLL Guideline publications reflect that. You are much more likely to have scans or bone marrow biopsies if your specialist doesn't see many patients with CLL, because understandably, they don't gather the experience to make an assessment without the additional information provided by those diagnostic tools.
Pharmaceutical companies are very interested in learning about the impact of side effects and run patient surveys to find out what patients want. With Ibrutinib maintenance treatment, we know side effects, along with progression, are responsible for a total of around 20% of patients ceasing treatment. That's not good for either the patient or the pharmaceutical company! Charities supporting those with CLL also run patient surveys, so do look for the opportunity to voice your concerns via these means.
I'm sure we'd all prefer not to have to take medication daily or even more frequently, but to keep CLL under control without side effects, you are constrained with oral drugs by the time they take to go through the digestive tract, the half life of the drug and the higher risk of side effects with a higher dose. Given the limitations on absorption time (i.e. the likely quickest time through your digestive system - bearing in mind the common side effect of diarrhoea), and the half life achievable for a given drug formulation, the only way you can guarantee a longer time between tablet taking is to require a higher dose (with a commensurate increased risk of side effects), so that the drug maintains inhibition of your CLL until the next tablet is taken. Perhaps an implant would be preferable?
Neil
I meant i hope they can develop treatments in future like the infusions of obin combo which i had originally, which had almost no side effects but so far the existing ones do not keep CLL in remission long enough. The oncologist/hematologist i see definitely wants too many scans. In Canada it is difficult to change specialists. She wanted one 3 months ago to see if or how much glands and spleen reduced. I have only been on ibrutinib 13 months and blood counts are good and no visible swollen glands in neck. In order to go off ibrutinib i would of course want to know if spleen and glands no longer enlarged. Not sure when to ask for that. Have had 2 full body scans and am getting a neck scan (2nd one) for parathyroid nodule i have. They need second one i think because i have had to wait too long, over a year, for the simple 15 minute surgery needed so calcium metabolism can be restored to normal. Many of my symptoms like arrhythmia could be due to parathyroid condition and not CLL. I need to know. But most doctors here seem to be taking vacations every few weeks. Other people i know say this too of their doctors. Hospitals seem much less busy due to phone appointments.
My skin cancer specialist diagnoses by photo sent by phone which is hugely unreliable. I had a tiny speck on nose that I had checked out years ago. It was cancer. Had MOHS surgery. Very simple. No trace left. Everyone should have small skin changes checked out sooner rather than later especially if fair skinned and if their skin sun burnt in past. .
I believe that CLL staging is not at all like staging of other cancers. I believe that it is not uncommon with CLL to be told we are "stage 4" and many years pass still watching and waiting. CLL is slow growing.
Something to remember too is that previously the standard treatment was FCR chemotherapy. Some still receive that treatment, but many are receiving newer targeted therapies which are designed to eliminate only the malignant CLL cells. These targeted therapies are not like chemotherapy. Obinituzimab is one such targeted drug. Side effects still occur when there are other cells that the targeted drugs affect. Second and third generation targeted therapies are getting smarter and able to reduce side effects.
Some members here have even had CAR-T therapy where the T-cells are trained to target CLL cells. Development of this therapy is rapidly progressing. The beauty of it is that one's own immune system handles elimination of CLL.
I am in watch and wait, almost 5years now. When diagnosed, I changed my diet and other things to promote my health. It's not alternative therapy though. My goal is to extend my watch and wait period as long as possible before I need treatment. This gives more time for development and drug trials to create even more options. Who knows, some of us never need treatment. The longer we can be in watch and wait, then we have more chances to win the lottery and have spontaneous remission.
This is a very complex disease though and you must be monitored by a doctor to avoid problems. Preferably a haematologist oncologist who is a CLL specialist.
Thanks for responding. I have done research far and wide on the targeted therapies -- they are opening up great new prospects. The Obin plus the Chorambucil brought about a short 3 month remission. Felt great. Then onto Ibrut. That started about 13 months ago. Series of symptoms. They always seem to disappear and something new appears. Never felt as good as I did when i had first remission, as it was drug free. I realized then that I had had CLL symptoms for a long time previous to getting treatment.
Hi, over the years it has been at times of stress or worry that I have had changes in my cll. You are doing the right things in keeping fit. While many hope that eating and drinking certain things will help, I believe we need to remember our mental health and try to enjoy simple pleasures. Not easy with covid19.
Stay well, Anne uk
This is Glenn Sabin's story which he documents very well in his own book "n of 1" available on amazon and elsewhere. It's quite readable and well worth reading. I found it really interesting. Glenn is actually a member of this forum I believe.
Actually the cases I found had no names, and may be different, so thank you. Will see if I can find out more about that person. Best wishes to you.
Author of this article is co-author of his book.
I looked at one of the pages online. He was lucky to be medically monitored on his own journey. I totally agree with the main summary points he makes, and I do live according to such precepts. But i am 75, look much younger, but have few contacts in medical world. I feel I would like to wait for a year perhaps, as I am in remission, and keep taking the 2 instead 3 capsules of Imbruciva as I have been doing. Then I would like to risk going off the pills (as doctors often agree to this) and try to live as perfect a lifestyle I can in terms of health (state of mind I believe is ultra important). Only worry is if it comes back, then the imbruciva might not work again, and I would have to go on another drug which does exist. I have reason for wanting to live as long as possible, as someone depends on me who is disabled. Also I am trying to save money by working to help this person. Also I have a book I need to write. Each person has to take their own risks or seek the right assurances, as I agree we are all quite different. Humans are complex. Heck even animals differ from each other. But this does not mean I am not respectful of what medicine offers me. We just all try our best.
I agree with everything you said - especially part about state of mind being so important. If you were to go off ibrutinib without first becoming resistant to it, then chances are you could return to it at a later date if needed and still not be resistant. Also, there are additional non-chemo drugs now (venetoclax) if you do become resistant to ibrutinib at some point. So there are various pathways available to you. Good luck!
Thanks for that thought. Yes. My idea was to still be in remission. And then without the side effects compromising my state of health, trying to live really healthy and see how that goes. Of course I have no false hopes.
Sorry. I found it on my own. The case is very complicated, and it took time and treatments. I discovered two such cases. One had to have splenectomy and other treatments. Also another case is cited. ncbi.nlm.nih.gov/pmc/articl...
in case anyone is interested.
Good luck with your search for alternative therapies. The doctor who authored the study you reference is known for drawing a lot of conclusions based upon the experiences of the very few.
She needs to do a real clinical trial with her alternative therapies. None of them I have seen have survived true scientific scrutiny.
Everyone is in charge of their own life and treatment choices. I personally would be wary of any treatment plan based on how one person did.
The covid vaccines they are looking at are going through phase three clinical trials with many thousands of volunteers. That’s how you prove a drug is safe and effective. The fact one person drank green tea and recovered doesn’t prove green tea cures covid anymore than this retrospective study of one proves tea cures cancer. Just my two cents.
Bear in mind though the numbers of people who die from side effects of these proven drugs. They are proven to stop leukemia but not proven to save your life. Not nearly enough research is done on drugs, as individual companies and researchers are always rushing to find something that works better for killing CLL, rather than on perfecting or improving existing drugs.
All drugs have side effects, many of them serious side effects. The more serious a disease we are treating, the more willing we are to risk side effects. Ibrutinib has raised my blood pressure. That would be an unacceptable risk if I was taking it to treat a passing headache.
But I am taking it because I have a blood cancer. The side effects for me in not treating my leukemia would likely be a much shorter life and a painful death.
Ibrutinib is proven to save my life, if you mean by that it gives me a chance to lead a normal life expectancy. I don't think it was unsafely rushed to market, it went through and is still going through rigorous clinical trials.
I am all for any proven natural remedies, but this so called study is so typical of the alternative medicine pseudo science. Its an anecdotal story of one guy who got better, disguised as a study. A proper study for me would be giving 500 people with cll green tea, giving 500 people ibrutinib, comparing the groups and see who did best. I sure wouldn't volunteer for the green tea arm in that study
To my understanding, very few people die from the side effects of cll drugs. They die when their cll becomes resistant to the drugs.
You and I evidently have a different view of these things which is fine, reasonable minds can differ over many things. I am very happy companies are looking for new ways to kill cll, many of us will need to cobble treatments together.
And I am fine of one of those treatments turns out to be green tea or mushrooms or whatever. Just give me vigorous clinical trials that show green tea and mushrooms work, not anecdotal stories and testimonials.
Not sure we have different view. I am not someone who reads about alternative medicine or takes any. I am a curious person who wants to know what is going on in the world. As for side effects, my point is that they rush things to market to prove they can create longer remissions with drugs, without enough interest in the additinal cancers, heart problems and other severe symptoms of the drug. I noticed that a German clinical trial director also mentioned this. I have a friend who has two doctoral degrees who recently quit big pharma job because she felt they were rushing things to market, and now works for a university research dept. I do feel this drug saved my life. But as a clinical scientist conducting CLL drug trials said to me: "don't worry. Something else will kill you before CLL does." He said that, ironically, as if it meant this medicine is working really well. But the subtext for me here is that this medicine creates conditions that kill. There is not reason to not want more. For example, my blood pressure rose and spiked often, and I got periodic arrhythmia which researchers say is a side effect quite often of Ibrutinib. I assume it is as my BP was fine before starting this drug. Doctors want to do tests, which are not going to give any useful indications as I only have arrhythmia when I am stressed, and not when I go to get the test. I noticed however, that taking just half a clonazapam quickly got rid of the build-up of pulse that leads arrhythmia or made it stop quickly after it began. Later I noticed that using clonazapam for this purpose is mentioned by Mayo Clinic and other major research hospitals. Yet my doctor does not know about this, and is against using this method, even though i am not the addictive type. So we need to think for ourselves. And that is what Health Unlocked promotes -- by sharing information. I do not know why people, including doctors, immediate assume I am " on the other side" using herbal and other supplements. Cannot afford them and also I am not going to take something without knowing whether my body already has enough of a particular vitamin etc. I am a great believer in eating the right FOOD at the right time, as the body dictates. And relaxation and exercise as major influences.
I am in favor of sharing views. I think proper diet, exercise and meditation are very important for everyone, even more so those of us battling Cll.
I do think big pharma, to a large extent, is driven by profits. That’s not all bad, it gives them incentive to find new drugs. I don’t find that Cll drugs in general are rushed to market. There are those among us with refractory versions of Cll who desperately need the new drugs rushed as they are running out of options.
Every couple months or so on here we get the story of the one or two guys who claim prayer or green tea or something cured their cancer. There are many vulnerable people who buy into these stories. Dig enough and you usually find a book the person who claims to be cured is selling.
So yes, I am all about an open mind to different therapies. Many drugs we use come from natural sources. My tilt is towards science. Don’t give me anecdotal stories and testimonials, the hallmark of most alternate medicine websites, give me randomized double blind clinical trials.
Sorry if I misunderstood your first post.
I pretty well agree with you. But I do believe a cure is possible albeit not probable with most people, and I am not saying those cases I read about are a good example. The clinical scientist conducting major trials, who I see periodically just to talk, told me there are actual documented cases, but rare.
> A proper study for me would be giving 500 people with cll green tea, giving 500 people ibrutinib, comparing the groups and see who did best.
No, not really. What you describe would be unethical and against law in most countries. For the very same reason, scientists don't infect people with coronavirus to test if their vaccine works.
However, CLL, in most cases, is a disease which you don't treat for many years - watch and wait. This is a perfect period to study the efficacy of alternative treatments - you give green tea (EGCG) and/or curcumin, to 500 people, then the other 500 people just continue their watch and wait as always.
Then compare which group's W&W period was longer, with less events, sorted by age, stage and so on.
Heck, some microstudies were done on that, with seemingly encouraging results:
newsnetwork.mayoclinic.org/...
The reason it would be unethical is because no scientist would put green tea up against a true Cll drug. Ibrutinib goes head to head with in many other studies against legitimate Cll therapies such as fcr and venetoclax. Why is that not unethical?
The 2010 green tea study you link is a 2010 study green tea enthusiasts constantly link to that proves very little. Here is the conclusion:
“Without a phase III clinical trial, we cannot make a recommendation that EGCG be used by CLL patients“.
The reason the whole green tea idea was abandoned is because to have any real effect people had to ingest toxic amounts of EGCG.
So I am not sure the point you are trying to make. My point is very clear. Drugs like ibrutinib and venetoclax go through rigorous clinical trials involving hundreds, if not thousands, of Cll patients to prove their efficacy. Alternative therapy doctors tend to rely on anecdotal stories of an unexplained spontaneous remission here and there.
If green tea cured cancer there should be dozens of proper clinical trials showing it outperformed legitimate Cll drugs instead of a 2010 study that was never followed up on and concluded there was insufficient evidence to warrant treatment with green tea for Cll patients.
> The reason it would be unethical is because no scientist would put green tea up against a true Cll drug.
Exactly that's my reasoning. In watch and wait, you don't take any CLL drug at all.
In other words, while in watch and wait, you don't have an ethical problem of "green tea up against a true Cll drug" you mention.
> “Without a phase III clinical trial, we cannot make a recommendation that EGCG be used by CLL patients“.
Of course they can't. That's a standard conclusion of almost every early trial - you need a proper test on large amounts of people to give any recommendations, especially for a disease as serious as CLL. Their test was just made on a handful of people.
> The reason the whole green tea idea was abandoned is because to have any real effect people had to ingest toxic amounts of EGCG.
But, that is not entirely true. I don't think Mayo clinic said they won't do phase 3 trial because of EGCG toxicity?
They even explicitly mentioned that further research would be interesting:
"This rate of biologicresponses exceeded the protocol-specified decision rule that a biologic response rate of 50% would suggest that EGCG was worthy of further clinical testing."
acsjournals.onlinelibrary.w...
Their study on a small group of people shown benefit for 69 percent of people, seen as reduction of CLL in blood and lymph node size decrease:
"In all, 69 percent of CLL patients had a biological response to EGCG as evidenced by a 20 percent or greater sustained reduction in blood lymphocyte count and/or a 50 percent or greater reduction in lymph node size, the researchers say."
Side effects were also studied:
"Because EGCG was being studied in patients who did not otherwise need treatment, the researchers took a rigorous approach toward studying side effects. Most clinical trials of therapeutic agents only report grade 3 and higher side effects, but the researchers looked at and reported grade 1 and grade 2 as well. While a number of patients had transient grade 1 or 2 side effects, only three of 42 experienced a grade 3 side effect during their six months of treatment. “All in all, the treatment was well tolerated with very mild side effects in most patients,” Dr. Shanafelt says."
But this leaves us with lots of unanswered questions, some being:
- what is the right dosage? how many times per day? on full, or empty stomach?
- do sex, age play any role?
- do existing mutations play any role?
- CLL patients may have other diseases - do they play any role?
- can EGCG promote clonal evolution and worse outcomes should patient need a drug therapy (when W&W period is over)
- does EGCG cause liver malfunction when taken over long time?
Stage 3 trial would need many patients, many years to study and would simply be very expensive to answer that for a single university or clinic - and no amount of free green tea from a supplement manufacturer would help here.
> So I am not sure the point you are trying to make.
My point is that "500 patients green tea vs 500 patients ibrutinib" for people needing drug therapy would be unethical.
On the other hand, I fail to see how "green tea vs watch&wait" would be unethical.
If you're at a point where you need drug therapy, no amount of green tea alone is going to help you.
Unfortunately the Mayo Clinical trial ended because the supplier of the pharmaceutical grade EGCG "Polyphenon E" used in the trials, ceased manufacture of the oral preparation and pursued the larger market of genital and perianal warts, so we lack long term study data.
en.m.wikipedia.org/wiki/Pol...
One of the principal authors of the Mayo Clinic phase 1 and 2 study reports, Dr Neil Kay, in a Patient Power interview, advised CLL patients NOT to take EGCG capsules to manage their CLL, "because we don't know what's in them". Unfortunately, Patient Power have removed that interview from their website (it was from around 6 to 8 years ago). Dr Kay is sadly correct, however, because the herbal supplement industry is poorly regulated in most countries and concerns about levels of pesticides, heavy metals and fungal and bacterial contamination, along with active ingredient substitution and the inclusion of prescription only drugs is unfortunately valid.
Thankfully, we now have a growing choice of highly effective non-chemo drugs that were only dreams 10 years ago. As you wisely observed "If you're at a point where you need drug therapy, no amount of green tea alone is going to help you." and therein lies the danger. A few recent large studies have conclusively shown that those that continue on with unproven cancer treatments have significantly shorter survival times than those who accept they need to start proven clinical trial based treatments.
On an anecdotal note of another case study - me, I needed treatment after taking 2 grams of EGCG for nearly 11 years. I kept fit and ate a reasonably healthy diet and have the right markers for a ~2% chance at a spontaneous remission. Didn't happen. 
Perhaps I should have had my spleen removed! (I've upped the spontaneous remission rate from 1% to 2%, because I fall in the 50% group with IGHV mutated CLL, which is shared by all but one of the ~10 case studies of spontaneous remission in CLL I've read about).
Neil
11 years, not bad.
I've been wondering - some say that 30% or so of CLL patients never need any treatment.
30%! So it would seem it's fairly common.
I'm a skeptical person - if 30% of CLL patients never need any treatment - why scientific articles like this were even written if never needing any treatment is so common?
europepmc.org/article/pmc/6...
Case Report of Unexpectedly Long Survival of Patient With Chronic Lymphocytic Leukemia: Why Integrative Methods Matter.
(there is a PDF with full text on the right side).
Article date: 01 Feb 2018
Case Presentation: A 56-y-old female presented to her primary care physician for a routine physical in 2001. Complete blood cell results suggest pathology among white blood cells. Flow cytometry was used to confirm the presence of CLL.
Given the median age of diagnosis is about 70, many of the 30% not needing treatment would die with CLL, not due to their CLL, but we do have members that have gone along time without needing treatment. I suspect that many in this situation would either not be members or at least become inactive members in our community, given most posts are from people about to start or who are in treatment or have just been diagnosed.
The authors of this article don't appear to be experts in haematological cancers. The first author has a Master of Science degree and the doctor author notes their expertise in Primary Care Internal Medicine, Integrative Geriatrics, Functional Medicine, Integrative Palliative Care. This and the definition of CLL "It affects B and T lymphocytes as well as natural killer cells, but the majority of CLL cases diagnosed are of the B-cell phenotype" and the strangely written FISH results concern me regarding the quality of the paper. The subject was also described as stable, early stage CLL initially.
Per the paper's, "Conclusion: Nutritional supplementation along with lifestyle changes appears to have supported the maintenance of stable and indolent CLL in this patient." As Cajunjeff notes, you can't really draw any conclusions from such case studies. You need a comparative trial large enough to determine whether there is a meaningful difference in outcomes, particularly when there's around a 1% chance of a spontaneous remission.
The mission statement from where one of the authors works mentions "integrative therapies, education, and research". Being cynical, these papers do provide a form of advertising for the authors, which of course can be said for CLL specialist papers and videos regularly covered in posts to this community. I know which are far more convincing however, not only because of the way that clinical trials are structured, but because of the many personal experiences shared here, where members give specific information on how their blood counts have improved and their nodes and spleens have shrunk from approved treatments. I've found members who claim to have experienced improvements from non-conventional treatments rarely share such information without being asked and even then, it's hard to see how what is reported is exceptional.
Neil
You've made this site your life's work, to the great benefit of countless numbers of people. May you be blessed with peace of mind and freedom from pain and suffering, now and forever!
I think almost everyone on this site who went through treatment most likely explored alternatives along his or her journey. As AussieNeil said, the odds are not in our favor. I would have died 4 years ago if it weren't for modern medicine.
Ellen,
I agree wholeheartedly. When you’re in watch and wait and doing nothing, you take matters into your own hands to cope.
I’m so happy to hear that you’re doing great. You sure earned it with all your traveling to see your specialist.
🥂
Jeff
I personally do not spend money on supplements in health food stores, as they do not offer proof often, and also I do not know how my body would react. But i do believe fervently in exercise, proper eating, rest when needed and as much as needed, and avoiding stress. These things have had very noticeable effects for me.
So would I have died. In 2010 I had fcr. My lymph nodes from my neck to groin were enlarged. My spleen was pressing on my stomach and acting like a gastric band. The chemo worked. I have been taking ibrutinib for 13 months and my numbers are perfect I was told.
A lot of treatments have been developed in a relatively short space of time. It gives us all hope for the future. I do have arthritis and fatigue but I am grateful that the drugs are here. Anne uk
I'd pay close attention to AussieNeil and the others, here... spontaneous remission is a really long shot.
If you are willing to gamble with your life, it's your choice - but I seriously would not recommend it.
I am not gambling but striving to stay alive as long as I can. I do not take supplements. I am very keen on knowledge, as knowledge is the most important thing to imbibe when making decisions in life. The stories of the two I read, involved long term struggles with serious conditions before they "quit" taking orders from established medicine. I do not think the stories apply to me. But I am interested. I make up my mind, and change it as I go along paying attention to my own instincts and knowledge as well as specialists' advice, and also recognizing how very complex human biology and genes and the rest are. And that medicine also takes wrong paths. But am grateful for what medicine has given me personally.
I wish you all the best.
My own background is in science, so I tend to play the percentages. I would not, personally, trust my instincts to take the correct decisions.
But as I always say - we're all different, and have to find our own path.
It is very important I feel to think in terms of probabilites.
Indeed it is.
I'm typically very conservative in my approach to what I ingest. While I'm not about to run out and buy any or all of the items in my list, I do plan to engage in additional research. At the same time, if I continue to have adverse reactions to Imbruvica and possibly other targeted therapy meds, I won't hesitate to seriously consider alternative approaches. I've always felt we need to bring our own intelligence to bear on any issue before us, to the degree we may be capable of doing so. Good luck to you, as well.
Unfortunately the link does not work. Would you be able to cut and paste the article onto this page?
I think most people when given a cancer dx, esp something like CLL and many with prostate cancer who are told to w+w, start looking and hoping for ways to affect their chances for improvement and survival. It feels maddening and counter intuitive to do nothing and wait for cancer to get worse. In my case I began the green tea extract and curcumin regimen. Those of us who tried this were hoping to find the right green tea ext. b/c that used in the original trial was not available to the public. As I worked my way up to 1400 mg a day ( 4000 mg /day is the target as I recall) nighttime urination increased to 4-5x a night. Already having yrs of prostate related sxs, this made nocturia worse. Several days in a row waking up to pee that many times is not conducive to restful sleep and ongoing overall health. I stopped green tea ext but cont to take 400mg/day of curcumin for its anti inflammatory benefit.
I am 13q, CD 38+ and borderline IVGH mutated. November will mark year 6 since dx. All the other main numbers we watch are still at the lower end of normal. For a time my neutrophils were steadily declining but they bounced back up. In the last yr I have started to develop some enlarged nodes on my trunk so I am prob now elevated to stage 1. While I experienced many a sleepless night in the first couple of yrs along with what was likely my one and only period of clinical depression in my life post dx, I consider myself fortunate to be where I am now. Many others with CLL have a much more scary and troubling time with this illness. The newer tx's and rich, ongoing research give hope to all of us.
This forum has been a godsend. So much knowledge and support. I appreciate all that our members contribute, esp those who share their abundant knowledge, even during times when they may be going thru a tough time themselves with CLL.
Long live the memory of Chris Dwyer who gave so much to this group.
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