Is there a natural cure for my CLL?
Is there a natural cure for my CLL?, or do I just do nothing until it progresses to the point it has to be treated with drugs or radiation. My doctor will not treat it right now.
The short answer is there is no natural cure for Cll. Leading a healthy life style does help lengthen our lives. The conventional wisdom is that there is no survival advantage to treating Cll early. That may or may not change with new Cll drugs currently in trials.
We do watch and wait to treat until it’s necessary, some never need treatment. There are a lot of good treatment options and the hope is that if Cll can’t be cured, it can be managed to allow most people to lead normal life expectancies.
Radiation is rarely used to treat Cll. Chemo is still being used, but less and less. Oral immunotherapy drugs are becoming the standard of treatment for most. If they discover taking these drugs earlier gives a survival advantage, we may see Cll treated earlier in the future.
I would like to echo the above. There is much one can do in the way of diet, exercise and supplements help control CLL. But this is not enough. The new treatments are live saving and have limited bad effects.
My CLL tumor load has been reversed to maybe only 1% of my peak load with a combination of targeted drugs and "natural", basically Traditional Chinese Medicine. I have no serious side effects.
I do manage with lower than normal doses of the well target drugs because of my combining Eastern medicine with the Western drugs, but without the new drugs I would be in serious trouble. Good living is important, but take advantage of the miracle well target drugs.
I’m interested with your approach of low dose of targeted therapy and Chinese medicine.
My wife is about to start Ibrutinib in a couple of weeks and I intend to discuss with her doctor a low dose
Can you elaborate what exactly you are doing?
You can message me if you prefer
I think we should message for a private conversation on details. But I will provide a less detailed public response here.
I was kept alive for many years past the median lifetime for my flavor of CLL by a combination of drugs that are off-label for CLL (such as Metformin) and Chinese Herbal Medicine. I did not take the recommended FCR 15 years ago. CLL advanced more slowly than most MD expectations, but it did not start to reverse until Ibrutinib was added...for me at less than usual doses. More recently I have added a less than normal dose of Venetoclax.
I will say here that for several years now my oncologist has been prescribing doses of Ibrutinib @ about 1/4 normal for all his patients. I was his first patient on Ibrutinib; I experimented with lower doses because was fearful of tumor lysis like symptoms. In the last few months a study was published and mentioned on this site. The study found that such 1/4 normal doses (about 70 mg/day) worked adequately compared to the previous standard. The previous standard remains the standard, as the study was small, only about 25 people. The experiments done by me and my oncologist were totally independent and not published.
My sense is that if good efficacy can be achieved with low doses, bad side effects are less likely. Our new target drugs are wonderful, but not without some adverse effects on some people. A-fib is a danger with longer term use for some patients. None my oncologists patients have had any series problems with Ibrutinib. But that is not a large enough sample to prove the case.
To NaturalWaze below, I do acupuncture along with Chinese Herbs. But I am less certain about acupuncture benefits than I am about the Herbs.
Thank you for your answer
I will message you in a couple of days
Please be aware that, as tsvieps has said, his experimentation is unique and involves just himself with the guidance of his Oncologist.
Regarding the chinese medicine element - I'm sure this has much to teach western medicine still, for example - during the time I have been working in Haematology I have seen ATRA (all-trans-retinoic acid) go from chinese medicine to standard of care for some leukaemia. Again, please discuss any chinese medicine with your oncologist and use a reputable practitioner. If you order items via the internet remember that the industry is not well regulated and you may not be getting what you paid for or at the right strength.
Please take care, your life and health are at potential risk. tsvieps approach is a highly unusual and could be a potentially dangerous approach to treatment if it is not supervised by an oncologist.
One last point - suggestions provided via PM rather than in forum replies do not gain the benefit of greater feedback and could be considered more risky.
I will definitely look into this but I want to believe that low dose of Ibrutinib plus special diet and eastern médecine could be a good fit for my wife since she’s in good health , has good markers and overgrown lymph nodes in the neck area the only reason to treat her right now
I want to emphasize that she has serious melanoma and bladder tumor concerns and side effects are also a big concern for her
Thanks for your input
Enjoy the holidays
Sergi - We all want to believe that there is an effective, less intense treatment for CLL that would be effective. The most effective approach I know of is to find a doctor who specializes in CLL, and who you trust, especially in a case like your wife's where there are other concerns. Were I your wife, I would want a doctor who fully understands her tumor and side effects issues and how to tailor her treatment to best deal with all of the above. I hope that your wife has access to a good CLL specialist!
She’s lucky to have you looking out for her Sergi. Best wishes for 2019 to you both
Best of luck for the new year
Hi - I’m curious if your Eastern medicine is acupuncture, Chinese herbs, or both? Can you say other Eastern modalities you have done that you feel helped?
I find the watch and wait very worrisome and regardless of what others think, would love to supplement this period with anything that could be supportive and proactive.
Please see my to Sergi. I do not want to talk here about the details of my protocol. If you message me privately, I can share with you some resources I use.
I agree that watching cancer is not a lot of fun. There plenty of more satisfying things to do.
There are some things everyone can do increase one's odds that are safe and low cost. There are useful supplements also; some of these are not such low cost.
As mentioned by others, if there are no bad symptoms and the rate of CLL expansion is quite low, it seems uncertain, so far, if early treatment with such things as Ibrutinib is an advantage over waiting. And, given the expense, there could be some difficulty to get insurance to jump up and pay for an early start. That could change if studies of combo drugs, such and Ibrutinib and Venetoclax, when started sooner increases the likelihood of stopping treatments. So far Ibrutinib controls for most, but one cannot quite without the CLL progressing. Some combo trials are stopping treatments for people with no detectable CLL.
Just came back from appointment with my wife’s hematologist and she’s about to start Ibrutinib in a couple of days here in France .Since it’s socialized medicine, you have to follow the national protocol which is Ibrutinib alone as a first line of treatment, Venetoclax can only substitute Ibrutinib if not effective
The combination is only for medical trial so right now , she has to start treatment with no remission in sight or deadline to stop taking the drug....
All the best to your wife Sergi!
She’s been waiting for a while now!!
Usual starting dose is 420 mg and watch the nodes disappear.
Per a correction I made in another post, Lola69 is correct that the normal dose is 420 or sometimes 560 mg per day. The study I mentioned and the not-published practice of my oncologist found with relatively small numbers of people that 140 mg also works well. I had mistakenly said that a 1/4 dose is 70 mg. The smallest capsule available here in the US is 140 mg. If there is no real emergency, testing such a lower dose may be wise if your oncologist agrees. One should know in a fairly short period if one's CLL is responding well from such a dose.
This is not something one should try without monitoring, but as a general principle all drugs have some side effects, known and unknown. So, independent of cost, if a lower dose is clearly shown to work with high efficacy, it is the best compromise for that person. But maybe not so for someone else. A concern that is always also valid is that treating a disease with too little can kill some of its members and then allow the survivors to develop resistance to the treatment.
Any choice takes on some risks. Not even a professional in the field has perfect forward vision. But we certainly know there are now many alive people who would be on the wrong side of the grass if Ibrutinib and its follow on successful drugs were not developed. I am in that group for whom "I" was a miracle.
The 560mg dose is for MCL 70 mg is also available but not in Montreal , Quebec. ( am still on the capsules)
I wish I can lower my dose.
You are correct. I was first prescribed @ 560, however. That was because I managed to receive Ibrutinib on "appeal" before it was approved for CLL, but it was just approved for MCL and that was the dose. Per my other discussions, I decided to tiptoe into the stuff because I tend to react too well sometimes to drugs. My minuscule dose proved both effective and all I could handle. I did escalate my dose after my WBC went down much lower than my 350k peak and my nodes shrank similarly. I am also a trial of one, with all my other protocol that is not standard.
My Onc retired a week ago. Another Onc at our local teaching hospital, whom I am trial "dating," said since I am doing so well, he would be willing to continue my whole protocol. But he admitted that he would have never gone along with it if I was just starting. Nor would he recommend it to anyone else, since I am only anecdotal. I think that is open minded compared to most Oncs.
If you are doing well and have proven efficacy, you should be satisfied. Yet a well supervised test of slowly reducing your dose should also not endanger you--if you quicken your frequency of monitoring to be sure you remain with full efficacy. As you and others have said, we do not want to let our cancers develop sub-clones that are resistant to our drugs. That does happen, even with people taking recommended doses.
If you look on this page for two boxes-
in the one labeled "Related Posts" you will find links like " Healing CLL naturally
and in the "Pinned Posts" you will find these.
(The boxes will be upper right column on computer screens and way below on mobile devices)
12 TIPS to get more out of the forum - and help others do the same
Good article on navigating complementary cancer treatments
THINGS WE CAN DO to improve our CLL journey (an update of "Coping Strategies")
When will I need treatment? Is Watch and Wait still the best option with newer treatments?
CLL is not yet curable, either by chemo, targeted therapies, diets or supplements, but a carefully chosen combination of those can control the disease in most cases. The best strategy is to get a CLL Expert doctor to examine you and advise you and your other doctors.
Yes there is, is part of a complex answer.
If you mean that there is a natural way to cure Cll by your yes answer, I disagree. I don’t agree it’s complex either. There are no natural cures for Cll that have been proven by any generally accepted scientific proof. There are no trained and respected Cll specialists within the Cll community who believe in natural cures.
Anytime anyone ever links to a supposed natural cure claim, it typically takes about 5 minutes of internet research to show the claim is either an anectdotal story by a person who claims to have been spontaneously cured, a claim by a doctor who has questionable credentials, or some spam by a supplement seller.
So it’s not that complex. If some supplement manufacturer wanted to prove a natural remedy for Cll, they could enroll a few hundred people into a study sanctioned by a major learning center and contrast that group with a control group and do a study performed to scientific standards that true Cll professionals would recognize.
That said, I am one with an open mind who would love to cure my Cll with some veggies or tea or whatever. Please share any data you have. I am wrong about a lot of things and this is one subject I would purely love to be wrong about.
A very balanced response cajunjeff!
The treatment is complex as described. It has numerous clinical tests.
You are reiterating dominant beliefs stating it can not be so, again supported by others caught in that same modality. Generally easily dismissed treatments are used for all types of treatments. This is an error and mistaken again.
So tell me for what reason, not to be rude, would I bother to describe complex processes, waste time, to argue with devotional believers (of any sort)? I can not go up against established dogma and repetitive incantations.
I'd rather stay well, continue my research and converse with those who are open to opportunities of health and research. The fact remains that CLL can be treated outside western medicine.
Hello, you should share your research and describe complex processes. I wouldn't let scrutiny deter you. It is uncomfortable but healthy for everyone. If you submit your research somewhere it can be peer reviewed it could improve your method. Protocols can be really tricky to design. There could be new variables you could discover to monitor progression better in the process. Also figuring out how many subjects are needed for control and treatment. Finding correlation is a tricky business. All medicine is science at the end of the day.
Thanks for encouragement Dried Seaweed. It is good to hear others are doing serious research on, or outside, the dominant modes of treatment. What is your particular area of research.
I am not a researcher. I am a music teacher right now taking math classes on the side. I am aiming to start a masters in statistics so maybe I can find a new job that helps research in some peripheral way. Hopefully CLL will get out of the way distracting me in 2019!
Phenry - Please provide links to the numerous clinical tests. I'm sure there are many who would like to read about the protocols and results. Thank you.
Dear MsLockYourPosts. Thank you for your interest in the clinical tests. I have not hear from others that are serious about reading multiple scientific papers. Most are happy with quick answers from blogs or feeling safe with what they have been told. If there are many others I will spend hours to compile a representative list.
A few years ago I have answered some of these questions in part to some current administrators who have left my considered response without full reply. To work for nothing but simplistic blog responses is a waste of time. Best wishes
Phenry - When you suggest that an approach is supported by numerous clinical tests, but don't provide links to any of them, and suggest that people should contact you off list for any information , it leaves one wondering what your motives are. If you have done the research yourself, it should not involve very much work to share links to some of the more reliable documents. I'm afraid that I found your responses to be quite rude. I am open to reading reports from qualified researchers about clinical tests conducted by them. UCLA has a School of East West Medicine where doctors explore the possible benefits of considering the best of both approaches. I do have a problem with people who suggest only sharing information "behind closed doors".
MSLock, rather you are being rude to ask me to do your work for you. You have not responded to the problematic qualifications I wrote you. What you ask would take much of my time and at this point you are the only person asking. If you are honestly interested not using old dogmas, blog defences or quick 5min internet negations Start with the below current CLLCANADA threat and return when you would like to discuss something specific. Best wishes. healthunlocked.com/cllsuppo...
My CLL was diagnosed in 2003 when chemo was the only treatment option which we very much wanted to avoid. Based on research I stopped eating meat and dairy and drinking coffee. We primarily ate vegetables and beans with occasional seafood and poultry. we found a European study showing lower incidence of cancer in people who ate lots of beans the darker the better. And I exercised regularly. Despite our best efforts and monthly IVIG my immune system gradually declined. After being hospitalized with sepsis I reluctantly consented to chemo (FCR) in 2011. The 5 remaining chemo appointments were repeatedly rescheduled due to low WBC and platelet counts. My oncologist decided that the CLL had gone into remission from the first chemo because my WBC would have gone back up to fight the CLL if it was still active. My point being that we should be proactive with our self care in hopes of maximizing the benefits of treatment when it is indicated. Best wishes and happy new year.
If you, like me, are not ok with letting the disease come to you on its own terms, I would highly recommend that you read “Anticancer: a New Way of Life” by David Servan-Schreiber, MD, PhD. In it you will find a treasure trove of well researched information on how to change the “terrain” of your body to make it as inhospitable to cancer as possible. You can’t change your diagnosis, but you can definitely change what you eat, and how you care for your mind and body with the goal in mind of cutting off the cancer’s ability to find nourishment, to signal and reproduce; and ultimately ways to induce programmed cell death (apoptosis) in the cancer cells. The book has been endorsed by Dr. Mendelssohn, head of research at MD Anderson and many others. It does not espouse quackery and seeks to incorporate traditional medicine to provide the best possible therapy. You have to be willing to change your lifestyle (who among us isn’t?); but the best part is you can get started today. No such thing as watch and wait. Instead this is about healing through the best integrative medicine solution possible. And take heart- the expensive wonder drugs will be there if you ever need them.
Here’s to the new and improved you on your big adventure!
Didn't Servan-Schreiber die of his cancer 8 years ago?
Might read this...
Indeed he did- about 20 years after his malignant brain cancer diagnosis, which was not curable.
Lots of good quotes in that article Chris:
Those who get both conventional and alternative treatment and survive often refuse to give credit to the conventional treatment.
Chris Wark immediately comes to mind here, as he dismisses his bowel cancer surgery as curative and over emphasises the relevance of his dietary changes when he refused adjuvant chemotherapy, that would have slightly improved his already very good probability of a cure thanks to his surgeon removing his bowel cancer.
The most science has shown is that having a generally healthy diet and exercising regularly lowers our risk of getting cancer. It does not prevent cancer. It does not cure it.
The idea that there’s no money in natural products is easily refuted by the success of bottled water and natural health food stores.
Plus many more...
Excellent. Thanks Chris!
I’ve read where people get spontaneous remission.
Spontaneous remissions rates are about 1%, which I think is considerably higher than the incidence of those claiming to be "naturally cured". If 1% of us felt that we were naturally cured, we'd have over 100 members sharing that exciting news. That makes it very hard to determine whether or not (or to what degree), all the effort into seeking that natural cure has been effective or it has happened just by chance.
Incidentally, nearly all the confirmed CLL spontaneous remissions happened in those with IGHV mutated CLL.
My two year regression was primarily due to weight loss and reduced inflamation, and while I had changed to a diet high in vegetables, and a low glycemic index, I think the most positive benefit was from exercise in my case, twice daily brisk walks.
I think stress will kill u way before cll.
Lead a stress free life and everything in moderation.
Read the book before dismissing it. It’s filled with well controlled studies and systematic reviews. Comparing the bottling and selling of the most abundant substance on earth to consumers who fear contamination of this indispensable resource to R&D of food for the much smaller cancer patient market is hardly fair. Dr. Servan-Schreiber never promoted abandonment of mainstream medicine. He claimed only that it has its best hope of success in a patient who is mindful of what they put in their bodies, what they expose themselves to, their level of physical activity and control over their basic physiology (e.g. breathing, heart rate) through prayer/meditation. Everyone will choose to confront their illness in their own way; but you do them a disservice if you suggest that only mainstream medicine plays a role. And you deny the evidence as well.
A common catch phrase used by those espousing alternatives is that "there's no money in it", to pay for research proving the claimed benefits. I've worked in the water industry and got to know very well the group responsible for testing water quality through the entire processing and delivery chain. If marketing can sell the same product packaged in a plastic bottle for 1,000 times what you pay for it when you get out of your kitchen tap, then there has to be money to prove the effectiveness of alternative medical treatments. The problem is that there is no incentive. Customers happily buy without expectation of proof, so why disadvantage your company to the benefit of your competitors?
From what I can determine, about 45% of the bottled water industry uses municipal water. I consider it most appropriate that a high profile bottled water company is 'naive' spelled backwards.
Read N of. 1 . Glenn Sabin.
Also I personally know someone who brought their white count down from 150,000 to 50,000 on a raw food low sugar vegan diet.
She delayed treatment 2 years until she could get on a non chemo clinical trial with Imbruvica and gazyva. She is doing well,
knock my disease down, but docs will not treat low risk CLL patients unless there are symptoms. Not
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