I refused Chemo 2 months ago and I am trying the natural path

Call me crazy but after alot of research and many nights up late thinking about my situation I decided to tell the pros at MD Anderson that I would wait instead of starting a clinical trial that they recommended. I really don't know how all of this will turn out but I have faith that I have made the right decision and only time will tell. I saw a video of a guy that had Colon cancer and was told he only had 6 months to a year to live unless he started chemo. Then he would have a 65% chance of living past 5 years. He decided to take his situation in his own hands by changing his eating and lifestyle by eating organic vegetables and fruits everyday along with exercise. Within 12 months he was cancer free. His name is Chris Wark. He has a website you can look at called Chris beat cancer.com. He now is cancer free and spends his time sharing his story and helping others with cancer. I also came across a natural path doctor by the name of Dr. Leonard Coldwell. I started eating raw organic vegetables and fruits and have totally changed my diet. I have been exercising daily and I have more energy than ever. I have lost 13 pounds and I don't have as many symptoms as I had before. I really don't know if I can reverse my cancer by doing this but I figured I would try. My hope is that when I have my next doctors visit in October the doctor will tell me after reviewing my numbers to keep doing what I am doing. I have seen many videos of people that have cured themselves by eating only organic vegetables and fruits with no meat. If they can do it then why can't I? At the end of the day if my numbers don't improve I will most likely start treatment. I welcome any feedback from my fellow CLLrs.

Best Wishes

BC

91 Replies

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  • Hi BC,

    Chris Wark did NOT beat cancer by following the natural path. PLEASE read this explanation of what Chris Wark did and didn't do and reconsider your decision. Basically Chris Wark had curative surgery to remove his colon cancer and refused his medical team's recommendation of follow-up chemotherapy to clean up any remaining cells missed by the surgeon's knife: sciencebasedmedicine.org/ch...

    With CLL, surgery is not an option for us to remove 99.999% of the cancerous cells so that our bodies can overcome any remaining cells, with or without chemotherapy assistance. PLEASE don't become yet another victim of Chris Wark's dangerous misinformation. PLEASE read and re-read the above article (there's at least another explanation of how dangerously misleading Chris's blog is) and understand how his approach won't work for anyone with a solid tumour unless they first have surgery or radiation treatment and is absolutely useless for anyone with a blood cancer.

    Neil

  • Thank you,

    I will definitely look into this.

  • Have you read anything on Dr. Leonard Coldwell? He claims he has cured over 30,000 people using natural path therapy.

  • He has been around for a while - keeps reinventing himself while curing nearly 3 people per day for 49 years, so someone should be able to verify his claims! rationalwiki.org/wiki/Leona...

    You may be able to slow or even stabilize your CLL, but it might take longer than 2 months to see a positive change. Whatever you do, don't allow your treatment window to close. MelioraDay has given you some excellent advice.

    Importantly Venetoclax plus Ibrutinib is NOT chemo, but an extremely promising combination inhibition therapy, which is strongly targeted to CLL cells.

    Neil

  • Good info Neil. I agree.. I think it will take longer than 3 months to see the kind of results I'm looking for. I would be happy if I could keep my CLL in check.

    Thank you

  • Good advice Aussie Neil. As always.

  • I wish you the best of luck but if you are really serious about doing this on your own, I highly suggest to look into Gerson diet and Gerson therapy if you have people to help you with their restrict therapy. They are in San Diego, CA. They also offer three days course online every three to four months. It cost me about $180 and they ship you a lot of helpful materials to read. In my opinion, definitely money well spent.

    Currently , I am on Imbruvica. I didn't have any family members to support me with Gerson. My wife used to work for my oncologist and she always talked very highly of him so I trusted her judgement.

    Good luck

  • Gerson therapy is an alternative therapy which means it is usually used instead of conventional cancer treatment.

    It aims to rid the body of toxins and strengthen the body’s immune system.

    There is no scientific evidence that Gerson therapy can treat cancer. In fact, in certain situations Gerson therapy can be very harmful to your health. The diet should not be used instead of conventional cancer treatment.

    cancerresearchuk.org/about-...

    and further down the article:

    A review in the USA by the National Cancer Institute in 2010 found no evidence that it helped people with cancer.

    A 2007 study of 6 patients in the UK found that this type of therapy seemed to help people feel better emotionally and reduce their need for painkillers. But this number of patients is very small so these findings are not reliable.

    It is difficult to be sure if there is any benefit from using Gerson therapy from the research that has been done so far.

    This is because:

    - record keeping during studies has been quite poor

    - it is a complex therapy that can go on over months or years

    - we can’t know what other factors might or might not affect the outcome during this time, including the environment or other treatments and diets

    - some promoters give only anecdotal evidence, meaning that they use an example of an occasional person getting better as evidence

  • Hi, my husband did the Keto diet and it lowered his WBC. But he got treatment on a trial study that used Ublituximab only as an infusion. He was given Benadryl and steroids before the infusion. It worked. His numbers came down with the first treatment. He had no side effects. His doctor will continue to monitor his numbers every 3 months for as long as he wants

    with the trial study. We did not want the CLL window to close.

    Texas Pase12

  • That's good news. I have my doctors appointment this Friday and I will see if what I have been doing is working. I don't want the window of opportunity to close for me on the trial so i may be signing up then for Ibrutinib /Venetoclax trial. But I will continue on my strict diet as well.

    Best Wishes

    BC... Texas strong

  • I read about the Gerson diet. It seems hard to follow unless you have lots of time and money. I'm lucky my wife is helping me with the juicing because it's alot of work.

    I hope you are doing well on Imbruvica. My doctor offered me a clinical trial.. Ibrutinib with Venetoclax

    If my numbers don't improve that's the route I will go.

    Best Wishes

    BC

  • If you are planning to juice a lot, please invest a bit of money in buying a good juicer. In juicing RPM matters. Please do research before buying so you won't waist your money. I bought an Omega Juicer (slow juicer 40 RPM) from Macy's which I am very happy with.

  • Thank you.. Keep the faith.

  • Changing your lifestyle will certainly be helpful for many reasons, however it is extremely unlikely to be curative for CLL. There have been documented cases of spontaneous remissions in CLL without any explanation, but they are rare. I can certainly understand not wanting chemotherapy, but there are non-chemo options that might be available to you. One anecdotal on the other side of this argument is the case of Steve Jobs. He had a rare but respectable pancreatic tumor for which surgery would have been curative early in the disease. He decided to treat himself with all manner of diets, juicing etc until the tumor was no longer amenable to surgery and he died.

    Give it your best shot with lifestyle changes which will certainly benefit you in terms of cardiovascular disease (still the #1 killer in the US). At least then you will know you have done everything possible. But don't allow the treatment window to close so that you find yourself up against a wall with your CLL. Then in the meantme explore non-chemo options that might be available to you.

  • Good information. I figure I would give it a try. The way I look at it is if I don't try then I can only blame myself. I know the odds are against me but I'm willing to take that chance. I will know in October if anything that I'm doing is working or not that's for sure.

    BC

  • To each his own, it is your body and you have to do what you feel is right for you - period. Someone mentioned not missing 'the window' This I agree with very much and it is something my Dr and I have talked about a lot. I am W and W....Perhaps combining both western and natro? Again, this is such a personal choice for each of us. I have seen both in my life. A very good friend decided to go natural with a different type of cancer, missed the window and died at 56......My Mom had non-Hodgkins, did very agressive chemo at City of Hope. She lived many years and died of something else at 88. Best of luck, Lorna

  • Hi

    There are many stories out there of people who have cured themselves too with natural path healing. You have to be willing to search and find alternatives. I'm willing to take responsibility in my own health and then let the chips fall where they may. When one window closes another one opens. I have seen a change in my overall well being from changing my lifestyle. Only time will tell if it worked for me or not. Heck.. If I'm still around I will make sure to say hi. 😁

  • Good to hear you take responsibility for your own health and ultimately, it is certainly your choice. One thing I would add, on a personal note is that my Mom died after suffering a massive stroke. She chose the "natural" route and refused to take even a baby aspirin or a mild water pill. In my opinion she died too early and needlessly. So I would share that when making your choices, please at least "consider" how those closest to you will be effected too should things "go south"

    Warm and Best Regards,

    Sue

    p.s. Had I been offered conventional "toxic" chemo with debilitating side effects, I too may have declined. However as Nell stated "Venetoclax and Ibrutinib are not usual chemotherapy..."

  • Good luck BCTexas! I too believe in the merits and the potential for a non-toxic means to manage CLL - even once it has started to progress. I pursued that as much as I was able until a point came in my own progression where I pretty much had to start treatment because I had virtually no available bone marrow left. But I don't regret trying the non-toxic approach right up to the last possible minute. In fact, given my deeply held views about health, wellness, Western medicine and big pharma, it was essential to my sanity and happiness that I try non-toxic approaches before poisoning myself. I would have never forgiven myself if hadn't tried valid non-toxic approaches first.

    Two books I found very interesting (they're both available on amazon) are:

    1. "n of 1" by Glenn Sabin (a man who has successfully used non-toxic approaches to manage his CLL, even when his progression was extremely far advanced).

    2. "Radical Remission" by Kelly Turner (A very interesting survey of more than 1,000 cases of so-called spontaneous remission from some type of cancer. She looks at what they have in common and found 9 factors to be the most commonly cited factors for what patients think it was that cured them or put them into remission.)

    There are of course hundreds of other books on 'how to cure your cancer naturally'. But I wouldn't waste my money. These 2 however are very good, and are not pushing any particular product or system.

    I came to the conclusion that for this approach to work, all the stars have to be in alignment, so to speak. It is not enough to simply do the Gerson diet, or simply do cannabis oil at a therapeutic dosage. Or take 120 different vitamins and supplements daily (as some people are). There is no magic bullet. It is about rebalancing one's life on all fronts. And healing past trauma/pain that may be a lifetime old and very hard to undo. And you also need a support system. Even operating and cleaning a juicer multiple times a day can be too much for many of us.

    I am hopeful that my treatment (FR) will deliver a decent remission. And I hope to ramp up my non-toxic methods to control it from that point on. So I have by no means given up on the non-toxic approach. I had some supreme and inescapable crushing stresses in the years preceding treatment, which I no longer have in my life. That may make the difference between the non-toxic approach succeeding or not.

    Keep us posted!

    kim

  • Hi Kim

    I wish you a long remission. Sounds like you tried the same thing I am doing. Just like you I have to at least try. Heck if I can't reverse my CLL at least I will be healthy and in good shape.

    Best Wishes

  • Hi BC -

    I'm sorry to hear your CLL has been keeping you up with worry. Seems to go with the territory sometimes =/

    I don't know much about natural path practices, I imagine there are a lot of variations between various diet recommendations. I'll say this though: I've been vegan (except I occasionally eat wild-caught fish) for over twenty years now. My diet consists almost entirely of organic vegetables, beans, olive/nut oil, and whole-grain starches (oh, and coffee =P). I have a low-stress job that gets me outside a lot, I exercise frequently, and maintain a good weight. If natural path practices worked I should be completely immune from cancer! And yet I got SLL at a pretty young age. My diet didn't cause my cancer and there's no known mechanism for diet to cure it.

    Maintaining a healthy diet, exercising, and keeping an optimistic attitude can help tremendously with living a good life! but there's absolutely no scientific evidence that show these can cure cancer.

  • Hi Marie

    I tried to go completely vegan but after a month I had to add lean ground turkey to my diet for protein. I'm a coffee drinker like you so it was hard to quit Starbucks. :'(

  • People have a right to deal with this cancer any way they want but I do ponder why you chose to ask this group for their comments. 🤔

    I wish you the best and hope you don't regret your decision. Ibrutinib + venetoclax sounds awesome to me. MD Anderson sounds phenomenal.

    I must be missing something here. Don't buy snake oil. If you're unsure, get another sound medical opinion.

    You're gambling with your life.

    Jeff

  • This group may be more diverse than you realize, Jeff. Many of us support and believe in and use non-toxic approaches. If it isn't discussed as much as the Big Pharma approaches on the forum, it's because people trying to discuss non-toxic approaches are usually shut down and then those convos move to back channels.

  • Kim,

    I would eat a bucket of leaves if it was proven to cure or slow the growth of cancer.

    Why on earth would MDA of all hospitals with such a glorious reputation suggest medication and not alternative treatments?

    I know, because they are not proven concepts.

    I suppose we are "blessed" with a cancer that generally is slow growing and allows us to make questionable moves.

    Sorry but I am a non believer.

    That being said, I truely support anyone's personal decision to make a mistake. I make them all the time and sometimes learn from them.

    Jeff

  • Jeff, just because a person's paradigm is different from your own, doesn't make it wrong. All paradigms are constructs, maps of reality, not reality itself. I don't have any difficulty at all accepting that you believe your paradigm is as 'right' for you as I believe mine is for me. It's a shame you can't be equally accepting of views that differ from your own. And saying you support anyone's personal decision to make a mistake is not accepting or respecting another person's worldview.

  • Acutually, MDA and recently Mayo have alternative med depts. now in US. It mainly is recommendations of diet.

  • Are they alternative med. depts. or integrative med depts? UCLA has MDs of integrative medicine and my doctors have no problem working with them, especially in areas like diet which they freely admit is not their area of expertise.

  • Unfortunately this was never mentioned to me.. I was really surprised.

  • I couldn't have said it better. When faced with this disease you look at ALL options.

  • Venetoclax and Ibrutinib is still an option.. I'm just trying the natural path for as long as I can hoping I can improve my overall health.

    So far so good.

  • Hi BC

    For CLL, I'd say feel free to give a natural approach a go so long as you're not too bad at the moment, you'll keep up monitoring with a knowledgeable haematologist and you're happy to go with a drug based treatment if your natural approach doesn't achieve results. The main issue is whether you might miss the window for a good trial and end up with worse options (although I assume you'll have the option of Ibrutinib which isn't bad).

    I'm on the Ibrutinib + Venetoclax trial and am doing fine with no side effects and all blood results back to normal range. One of the other guys on the trial was told he needed chemo10 years ago and refused it and improved his diet and exercise instead. He managed to hold off treatment (to the surprise of his Dr) until this trial option came along. That said, he still needed treatment in the long run and if he stuck solely to an alternative approach, it probably would have killed him eventually.

    I think I could have help off commencing treatment for a while but did not want to pass up a chance at a good trial and risk being stuck with only a chemo option (as I'm unmutated). Ibrutinib isn't subsidised in Australia yet.

    Let us know how you go.

    Graham

  • I'm glad to hear you are doing well on the trial.

    I will let you know how it goes.

    BC

  • Kim,

    I feel this conversation is becoming a distraction to the intent of the post. Perception is reality.

    BC, I hope you are healthy and happy regardless of how that happens. God bless.

    Jeff

  • Thank you.

  • My take is, eating organic - not harmful, eliminating meat and dairy - not harmful, exercise - not harmful, eliminating GMOs and processed food - not harmful, juicing nutritious, organic fruits and veggies - not harmful, eliminating sugar - not harmful.

    My husband and I have been vegetarians for many years now, and when my husband was diagnosed 18 months ago, he also gave up dairy. We do eat wild caught fish a few times a month. We are also juicing. And supplements have been part of our life for years.

    We do not eat grains, GMOs, processed foods, or sugar, we buy everything that is available in organic , organic, and my husband went to the gym faithfully four times a week until he fell down the stairs this March and broke his scapula and dislocated his shoulder.

    Unfortunately while on watch and wait, his CLL progressed quickly and his spleen has become huge - 20cm long! His enlarged spleen contributed to him becoming slightly anemic about five months ago, and his doctor predicted treatment would be necessary by the end of the year. He has very enlarged lymph nodes throughout his entire body.

    There isn't an herb, vitamin or other supplement that could reduce his spleen size and improve his anemia. His spleen doubled in size in just two months time.

    We also wished this clean, healthy natural approach would delay treatment indefinitely, but he will be starting Ibrutinib next week, otherwise his spleen will continue to enlarge and be in his pelvis. My husband has what is considered good disease genetics, but yet here we are.

    Everyone's CLL is truly unique, and each person responds differently to whatever treatment path they choose. Natural approaches take much longer to "work" than pharmaceutical approaches, so two to three months may not be enough time for a significant improvement.

    However, if my husband didn't have the spleen involvement, I do think our lifestyle approach would at least have provided more time before he would have had to start treatment.

    Fruits and vegetables aren't harmful, but as others have said, and as we have realized, treatment can't be delayed when it becomes necessary - not that you are planning on doing that.

    I apologize for my very long post. We did what you are doing, and we will continue to do it (sans many of the supplements that can't be taken with Ibrutinib), after he starts treatment next week.

    You don't need to abandon healthy eating or juicing if you need to start treatment. Nourishing our bodies is always a positive.

    Wishing you well.

  • Good info.. Everyone on here for the most part has been supportive.

    Best Wishes to you.

  • At the end of the day, comes bedtime. Sometimes it's best to sleep on it to clear your head. If a clean lifestyle is all I need to get rid of CLL, I shouldn't have gotten it in the first. I had four kids at a birthing center with no pain meds. I ate organic before it was in style. I've never had a weight problem, never used drugs even though I grew up in the 60's and 70's, never abused alcohol, never met a fruit or vegetable I didn't like and I do yoga. So why me? Everyone has something. I'm on Ibrutinib and doing great with no side effects. I continue a healthy lifestyle and encourage you to do the same. Keep an open mind, and sleep on it. Either way, I wish you the best of everything. Sally (USA)

  • That's an interesting way to look at it but I still think it's possible to reverse the symptoms and some have been cured. It's not easy but I have to answer to my self at the end of the day.

    Thank you for your response and good luck.

  • Keep in mind everyone on this forum has your back. I wish you a strong recovery. Best of luck. Sally (USA)

  • Thank you.. Haters will always hate.. Even in the CLL world.

  • Current therapies for CLL include non-chemo based drugs that are highly targeted and effective. I'm sure Anderson has access to them all.

  • Yes. It's a matter if you qualify for these. Not available for everyone.

  • I would be happy to be aviable to me Venetoclax and Ibrutinib.Unfortinately I have to accept the therapy aviable in Serbia.My future is uncertain...

    I think You should accept the proposed therapy that gives.You have the best chance.

    Alternative treatment is suspiccions.

    My opinion.

    Greedting!

    Olga

  • Hi Olga

    I hope what is available for you will work well for you. I know many people think anything outside of modern treatment is suspicious.. But you have to also remember that cancer is a business. And there are alot of people making billions of dollars and they don't want that to go away.

  • There are also a lot of 'conspiracy' book sellers/diet designers with pyramid selling schemes who thrive from people with cancer.

  • I have subscribed to none of these. Everything I have done has been from my own research.

    The only cost for me has been what I eat. and Supplements.

  • I hope.

    Maybe work.

  • Whilst I believe that everyone has the absolute right to choose their path in treatment and respect that decision I do feel that unproven and ,in some cases, wild exaggerated claims by alternative medicine gurus who are in it for profit are very dangerous.

    A few years ago on here a post from a mother about her son who was refusing conventional drug treatment to go on the Gerson diet really tugged at my heart strings. She was desperate to know how she could persuade her son to "see sense" unfortunately all we could do was to say he had the right to choose!

    Unfortunately the inevitable happened and he was lost!

    If indeed you are determined to try alternative methods Texas try and do this with the blessing of MD Anderson. Don't burn your bridges!

    I know their is a backlash in the US about big Pharma and their drive for profits which is totally understandable when you have the system you are in. But please don't let that perception cloud your judgment in anyway!

    Personally I'm thankful that despite the commercial aspects of both pharmacy companies and quack doctors trying to make a fortune out of us that at least here in the U.K. Our system is much less confrontational.

    I wish you well but my mind says the proven facts within conventional medicine are a better bet!

  • Yes sir.. Maybe a combination of both works well.

    Best Wishes to you

  • OK, BC - you're crazy. (You did ask!)

    CLL doesn't just "go away" and you can't operate on it like a hard tumour. Take steps to improve your general well-being by all means, but your blood counts are unlikely to change and improve without some form of medical intervention.

    Good luck, whatever you decide to do.

  • 😁

  • Hello BC

    What is your age?

    I am encouraged to read that u have more energy than what u had earlier!!! I am 65 plus and dx 10months, stage0, on W&W, and as of now, my only symptom is low energy. I am 100% vegetarian and no alcohol!!

    I am keen to know if u r doing something different which is making you more energetic?

    best wishes

    vinnet

  • I just turned 49. I mostly juice. I drink fruits and berries in the morning. Two cups of Carrot juice twice daily. Two cups of raw organic vegetables twice a day with Turmeric. I mix flax seed and chia seed and Hemp seed.

    I walk 2 miles a day when I can.

    My IBS is gone now. I was taking up to four pills a day for my IBS and now I'm only taking supplements and Vitamins.

    Best Wishes

    BC

  • Hi BC

    For sure your life is yours to control on whichever path you take, and be in no doubt that most of us here have seen this topic come up time and time again. Despite conflicting answers please know we all wish you well.

    I personally had surgery to remove a large melon sized cancer on my ovaries, this had to be followed by chemotherapy to kill off cancer cells remaining in the fluid which surrounds the stomach organs. I read and reread all that the people making money from we who look for a healthier answer have to say. In addition I looked for just one person whose CLL or cancer had been eradicated by juicing and diet, and had proof of it. I searched in vain, had Chris Wark not had his tumour removed, he would be gone. Had the surgeon not removed my mass I would be gone too.

    There are others here who have had solid tumours removed, and like me I'm sure they will be worried for you that you do not delay too long before treatment, but recognise the desire to self help. I am six and a half years into my CLL journey, two and a half into my OC journey. My partner battles every day with advanced prostate cancer, so cancer is no stranger here. We have always eaten healthily though never juiced, I still wonder why that is better than actually eating the fruit. I think if there was a proven healthy consumption answer out there I would have found it.

    I digresss, I admire your courage and wish you well on your journey to health however achieved. Getting healthier and exercising all help.

    Best wishes always

    Bubnjay1

  • Thank you

  • BCT Texas I have to agree with Neil, administrator. You have to know there are a lot of charlatans out there just waiting to get their hands on your money with their"miraculous cures." I am sorry to tell you that in spite of your endeavours your blood picture will eventually lead you to the only conclusion of proper medical treatment. It is a fact that many people diagnosed with cancer grab at straws so to speak to find that miracle cure. I was involved in the Drugs and Poisons regulation Group, Victorian State healt,h Australia. I was approving permits for all sorts of cancer drugs and other chemicals as I worked in the drug dependency area. From thalidomide to the retinoids to the Amygdalin and let me tell you in the end those people eventually got worse. But by all means I wish you luck with your diet and exercise and more energy though I suspect that is more your positive state of mind about the increase in energy. My own father in law, who had lung cancer sought all sorts of remedies including the apricot kernel drug amygdalin- he died a few weeks after taking something that I don't even know what it was but a friend of a friend had got it for him from the states. So be very careful of any natural or synthetic chemical that have not been trial tested. Roszika . B Pharm. sufferer of CLL.

  • BC, since D.C. In May 2016 I read/viewed everything I could. Juiced carrots, celery ginger (same as Chris Wark) 1st. 11 months. Backed off to 12 oz. now. Eat all organic vegan diet. Super smoothie daily, no processed food, ever. A great piece of advise from my nat. Doc, add weight training to exercise program. I feel great at 64 yrs old!

  • Good luck on healthy eating and exercise. I hope it works well for you. My friend Rick Salansky had lung cancer and went the natural/holistic way. He lost weight and looked really good for about 3 years. He was at work and was not making sense so they sent him home, he finally had a CAT scan and sadly, the cancer spread. He developed 3 brain tumors that killed him.

  • Bc. I wish u luck. But me Anderson is one of the best places to go for cll. I wish I would be able to go there for my treatment. Please reconsider. This is your life you can discuss other options but if they said chemo then that is the best for u. I am taking inritunib because I'm would not survive the chemo. Best of luck and God Bless

    Corkyrissa🙏🙏🙏🙏❤️

  • I had a friend that came down with leukemia and she was into holistic healing. The Doctors at the UW Hospital Cancer Center said they could stop cancer for at least 6 years and then there might be more things to do. Transplant etc. She turned it down and tried all the mumble jumble of crystals stones, different foods, and meditation and what ever else the quack she was seeing came up with. She died in 4 months. Stick with the real doctors. The world lost a wonderful person.

  • I spent over $50,000 on natural things. Chinese medicine, vitamin c drips, etc. All in two years. I'm on ibrutinib. I'll be dead before I take chemo. Works for some but not going to happen. Ibrutinib is fantastic.

  • I have had 12 rounds of chemo, it cured my Richter's transformation...

    Imbruvica (ibrutinib) for 3 months however was a disaster...

    Funny how that works..eh?

    ~chris

  • Blimey, as someone who did do 6 rounds of chemo at full dose....I suppose we make the best decisions we can for ourselves based on facts/info available at that time.

  • Don't forget Niccynoodle it's also what was available to us treatment wise Frontline.

  • How true...wroxham... unfortunately CLL patients in many countries do not have access to new treatments due to 'in country' approval requirements and extended funding negotiations...

    Its a drag but we lag... 😮

    ~chris

  • Hi Chris,

    Wondering?? as to the lag in approval/non-availability of newer drugs i.e., Ibrutinib in other countries. Can you share any thoughts you may have as to whether this is a component of "socialized medicine"?

  • Each country has an approval process, that varies widely. Doesn't really have anything to do with managed healthcare per say.

    The main issue comes because the markets are very small, and it simply may not be profitable to go through the drug and funding approvals.

    Its totally up to the drug companies to enter a new drug... sometimes they don't bother, as was the case initially with ofatumumab and bendamustine in Canada.

    In Canada drugs are approved by our version of the FDA.. Health Canada. Then the drug company applies to have the drug reviewed by a group called pCODR ... they look at all the data and decide if the drug warrants funding. If they have a positive recommendation, then the provinces and the drug company negotiate on price.

    Each province does this individually. It can take a year to 18 months, and the provinces can attach funding restrictions...quite common.

    Quebec, does their own review and funding.

    Historically the process takes 18 months on average, but you get some provinces funding and some don't, so it becomes a patchwork of treatment options. Currently, Imbruvica (ibrutinib) is funded in BC, Quebec, and the Yukon, for first line, but who gets it where is quite different. BC is quite restricted, the other two are more liberal...

    Venetoclax for example failed to get approval, due to a lack of data from the drug company, so it was declined by pCODR. It has been resubmitted for approval again, and is going through the process... these delays set things back 18 months or often more.

    ~chris

  • Chris,

    Thanks for your response and the information.

    My curiosity about the "socialized medicine" component in large part is driven by the potential for future changes in healthcare coverage on the horizon in the United States.

    Best Regards,

    Sue

  • I so resonate with your reply, BellaBee10!! Thank you!! :) xx

  • 😁

  • I would try to avoid chemo,if there was away to first try novel agents. I'll let you know....i have been on a strict MACROBIOTIC DIET for the last 19 months. But my purpose for doing it is to: Relieve CLL symptoms and to try to reduce disease progression. So far, although I have moderately poor variables and I am unmutated,the results have been nothing short of miraculous. My platelets which had been dropping for 11 years stabilized for the first time! I have no Cytokine fatigue whatsoever. No night sweats. I can jog at age 63 ,three miles 5x a week. I feel very strong and my WBC count was 15.4 in January 2016 and 19 months later since I have been doing macrobiotics,they are at 21.6.,at last blood draw.Supposedly I have had cLL since 2012,according to a CLL specialist who reviewed 10 blood tests. That said,while I know people personally who were pronounced impossible to cure medically who claim to have cured various cancers by dietary and mindset changes,I do not know anyone who has cured CLL by using macrobiotics or any other strictly holistic method.(Except maybe Glenn Sabin) And frankly I have met personally with many cancer survivors who have shown me evidence that macro cured other cancers when they were turned away due to having terminal conditions. But if it were me and a medical doctor said I had to try CHEMO, I'd probably do it and ask the doc if there was a way to customize the chemo to increments that might be less than standard or perhaps might limit side effects,etc. In the case of someone who has a mild version of CLL and are on W&W,heck, trying lifestyle or holistic things may help enormously,but if you are down to needing CHEMO immediately,I'd try to get with an integrative oncologist who may see the value of really customizing your chemo and also providing you with other types of non-medical treatments to help limit your side effects. I don't mean to muddy the waters here,but as much as a holistic believer that I am---If push comes to shove and I am told by several medical physicians that CHEMO is my only chance,I'd at this point really consider it,but first I'd look for actual CLL evidence to see if there were CLLers out there with similar version of CLL as I had and ask them how they did with chemo and how long it took for them to bounce back and get over any residual effects. Good LUCK!

  • I am 66, diagnosed CLL 2003, did WW 8 years with IVIG for most of that time due to various infectious diseases. I was and am mostly vegetarian with occasional seafood and poultry. I omitted dairy and coffee. Ran 4-5 miles weekly. I too intended to avoid chemo. Unfortunately I developed sepsis in addition to enlarged nodes and spleen 2011 with 3 weeks in hospital. I got my first and only FCR inpatient. The nodes and spleen quickly returned to normal as others have reported. I was scheduled for 5 more 3 day sessions of FCR monthly but my platelets and WBC were so Low that they couldn't give me FCR. After about 6 rescheduled FCR appointments my oncologist decided that the CLL was in remission from the first FCR. He said that if the WBC hadn't come back up then the CLL had not come back either. He said he had one other patient with this outcome. I believe this was due to a lot of prayers and the self care I practice. So I say more power to you!

    My remission lasted until this year. I have not been sick but my blood counts gradually worsened and my oncologist started me on Imbruvica 3 months ago. So far so good 😊

  • You are a trooper. Glad to heat Imbruvica is working for you.

    BC

  • Thanks everyone for your replies. The purpose of my post was to start an open debate regarding natural path healing and modern day medicine. Everyone in this community has been a blessing for me. I am lucky to have found such a great community with such a devers group. I continue to learn from each one of you and I thank you again

    We are all in this together.

    BC

  • I'm glad you did BC, as this interests me as well. I've been an herbalist for 30 years, and believe wholeheartedly in the power of plants, the power of a plant based diet, and the ability of the body to heal itself when giving it the right support.

    And I tried for the past 18 months with every reasonable, safe approach, except IV vitamin C, of which no one in our city, or surrounding area provides. My husband's blood numbers have stabilized, but yet his spleen has continued to enlarge at a rapid pace, and all lymph nodes in his body are enlarged, some quite large, and his liver and prostrate are also enlarged.

    So, for us, blood is good, but the rest is now critical. There are many cases I have read where solid tumor cancers have improved and receded, or have been cured by following a holistic path, but for a blood cancer, it seems beyond the scope of natural medicine alone. I am disappointed and terrified at the same time for my love. However, the pharma drug may indeed improve what is going on underneath the hood, and I wish for it to keep this dragon at bay so he can have a normal life span.

    I saw one case where a woman in India was being treated for her CLL with CBD oil from cannabis, and it was reducing her blood numbers, but I'm unable to find any follow up to that. We gave it our best effort, and my husband has remained very healthy otherwise, not getting sick with infections up to this point, and I do attribute that to our holistic protocol.

    If you have to integrate conventional drugs into the mix, try not to feel defeated. Everything we all do to nourish our bodies is a positive thing, even with conventional treatment. Perhaps, the combo of the two is the sweet spot.

  • I agree. I think we have to take personal responsibility and at least try our best to see if we can cure or at least improve ourselves naturally before anything else. But I also agree with you that modern medicine combined with natural path healing is probably the best combo for people who have CLL. I have an enlarged spleen and liver. My lymph nodes are enlarged so most likely I will be starting treatment soon. But I will still keep doing what I can to keep myself healthy. I wish your husband luck and I hope he beats this terrible disease.

    Best Wishes

    BC

  • Hi, try getting on a trial with ublituximab only. No sugar, coffee, and also no alcohol and bad carbs. It helped my husband. The ublituximab with Benadryl. Steroids were infused infused first to prevent reactions. It worked on the first treatment. It lowered his numbers to below 4. for the lymphocytes. His lymph nodes reduced to normal.

    We had been to MD Anderson and all we did was pay for tests and we went 7 times and got no treatment. We tried the Keto diet and it worked

    but we found the trial with the monoclonal antibody Ublituximab. This was

    what we wanted .

    Good luck,

    Texas Pase 12

  • CRYSTALSKY,

    One of the problems is that often CLLers have been led to believe that the only healing method to use is ABSOLUTELY Medical and to forget about trying natural approaches. Therefore the wealth of scientifically documented evidence that exist for medical approaches,is virtually nonexistent for alternative and INTEGRATIVE healing in relationship to CLL. (except for Glenn Sabin's journey and I have many doubts about his book N of 1) I have LOUSY markers and at age 63 I am no spring chicken. I HAD all kinds of existing maladies when diagnosed with CLL.(almost all of this went bye bye!) Right now if it weren't for swollen internal organs,after 19 months of CLL and doing macrobiotics, anyone that met me would never know I was sick. Truthfully,i'd never know I had blood cancer,so effective has macro been for relieving most CLL related symptoms. The positive ,is that I have had no joint pain,no fatigue and virtually no infections. My Hem/onc said to me that she believes upon reviewing 10 years worth of blood tests that I have had the disease since 2012. I am unmutated,tri-12+ and probably zap 70+.... I have had ITP(low platelets) for nine years. To quote my Doctor,"I can't believe how high your IgG antibody number is at this stage,perhaps it's due to your healthy lifestyle!" My IgG is 1440. Thats the good news!

    The bad news is that despite everything I am doing to stay healthy, the CLL hasn't left and I have many swollen internal organs. I went into this with a bum liver and an ALT count of 92,about 52 points above normal. Today I am at 28 which is the lower end of NORMAL. However my liver is still swollen and I do feel pain! What I have been trying to say is this: Quality of life is also important to all of us and using nutritional,exercise and mindset methods can give many CLLers a new lease on life. Especially those who may have very mild versions of CLL!

    Frankly,I am searching for an INTEGRATIVE ONCOLOGIST who uses both western medical and complementary holistic approaches. I personally think that's the way to go to get the best result. Take the best of both worlds.

  • Good to hear of your continued acceptable health on your macrobiotic diet and even more interesting to hear of your "many doubts about his (Glenn Sabin's) book N of 1", because perhaps you share them with Dean Ornish in his blog: sciencebasedmedicine.org/my... (note particularly PlanetaryKim )

    I didn't appreciate Dean's negativity or the fact that he only read the part of Glenn Sabin's book that was freely available via download or his (to me) derogatory use of the word 'woo', which is a variation on the Urban Dictionary definition of 'the way a person is when they uncritically believe unsubstantiated or unfounded ideas'. But Dean's observation that "while Sabin was undergoing this self-directed health regimen, his numbers were getting worse. This is not particularly good evidence supporting the efficacy of diet and exercise for curing CLL." and the reference to Glenn Sabin's case report are very interesting, because the case report identifies Glenn's use of EGCG/green tea: cureus.com/articles/3677-a-...

    We know from CLL patient funded research performed by Mayo Clinic that pharmaceutical grade green tea extract can reduce the tumour burden of early stage CLL patients in the majority of cases: ncbi.nlm.nih.gov/pmc/articl...

    What we don't know, is how relevant to curing CLL by alternative medicine (and I hesitate to include EGCG in that category due to Mayo's research) is having a splenectomy, given the spleen is a major part of our adaptive immune system and considered as a specialised (and massive) lymph node, which can contain a large proportion of our CLL tumour burden. Also likely to be relevant is that patients who have splenectomies are generally prescribed prophylactic antibiotics for life. There are suspicions that inflammation from infections is a driver for CLL, so much so that the CLEAR trial was established to research this: cancerresearchuk.org/about-...

    (Sadly the trial was discontinued and the results remain unpublished.)

    Perhaps Glenn Sabin's eventual CLL remission was due in part to prophylactic antibiotic use?

    Therein lies the huge problem when trying to cure yourself by following someone who self documents their cure. Which part of what they did actually helped? I for one am not prepared to go to the extent of having my spleen removed!

    And for those hoping for a spontaneous remission, the referenced paper on this fascinating subject notes that "In a recently reported series of nine patients with CLL with spontaneous remission of their disease, CLL cells were shown to be negative for CD38 and ZAP-70 in all cases. In the seven patients in whom IgVH sequencing was feasible, the IgVH gene was mutated in all cases, and there was preferential gene usage of the VH3 family. Microarray analysis suggested that CLL cells from patients with spontaneous disease regression have a distinct pattern of gene expression, which appears to be more closely related to normal B cells and shows the overrepresentation of B-cell-receptor–regulated genes.": ascopubs.org/doi/full/10.12...

    That doesn't match with your known and suspected CLL genetics, interestingly.

    On this general topic, the referenced article in this pinned post is well worth a read:

    healthunlocked.com/cllsuppo...

    Happy reading!

    Neil

  • I agree with you 100% regarding Sabin's book. I have been meticulously documenting every day with a journal. I have three docs watching everything I feel and do. What struck me as just plain silly, is that in Mr. Sabin's book,there is very little mention of his CLL markers and not one image showing pet scans or other diagnostic readings,nor do I see anything that actually shows us a yearly picture of his actual blood tests.

    If I was someone who made the amazing claim that they had holistically healed themselves...I would expect to see that documentation. To his credit, Mr. Sabin did manage to get the endorsement from at least 10 medical doctor's who do endorse his present diagnosis. He was followed by at least two Harvard educated Hems! Just the same,IF his explanation for not documenting his success very thoroughly, is that what works for one person,may not work for another and he's afraid that we'll all go off half cocked, to me would be just silly. I believe he missed a major opportunity to inspire us,by not being more thorough in retracing his journey for us through better documentation.

    Frankly,If I cured myself of CLL,I'd be showing EVERY FREAKING DETAIL...so that even if only two CLLer's out of a hundred might benefit from my protocol,they'd be more likely to try new approaches or seek further treatment from integrative doctors,who might be able to duplicate Mr. Sabin's results for others. However,this doesn't mean that Mr. Sabin didn't triumph and isn't onto something,it just means that I personally feel that his book didn't do a good job of convincing me personally.

  • I share exactly the same frustration as you when it comes to people blogging and supposedly 'documenting' their journey with CLL when they claim to have found a cure or at least some means of slowing their progression. Rarely are lymphocyte and other critical blood counts shown and when they are, much is made of changes which can readily be explained away by natural variation. Other far more critical measures of tumour load, such as spleen size and node changes plus the all important degree of bone marrow infiltration rarely get a mention.

    Equally frustrating is that a whole range of changes are concurrently attempted, which while the reasons for doing so are understandable, makes it nigh impossible to determine what might have worked...

    Neil

  • I happened upon this article today written by Glenn Sabin entitled, When Alternative Cancer Care Kills. I thought it was relevant to this discussion, so I'm posting the link in case anyone is interested to see what he has to say about this topic.

    I have not read his book, so I don't know if what he's saying here is in conflict with whatever protocol he followed.

    fonconsulting.com/blog/when...

  • I agree.

    Good luck on your journey.

    BC

  • Just wanted to say I agree with you 100%. Even though I will probably have to start treatment soon I will still continue my diet and exercise.

    Wishing you the best.

    BC

  • If I was you, I'd take the advice given by AussieNeil VERY seriously...

    FWIW, I have been a lifelong vegetarian (my mother and both grandparents were veggies), and eat a largely organic diet. It didn't prevent me from getting CLL (at 63), nor did it prevent the CLL from progressing so rapidly that I had to undergo chemo within 6 months of diagnosis. (5 years into a complete remission - I feel fine.)

    Because I am a scientist, I always try to follow the 'best guess' approach that science provides, at any given time. Are the experts always right? Of course not - but they are, far more often than not. Following the scientific approach is far more likely to lead to a positive outcome than taking decisions based on wishful thinking (AKA 'faith').

    I know there are people out there who refuse chemo (because they're scared of it? I'm really not sure of their reasons) - but in your case, it isn't even chemo that is proposed, if I understand correctly, but more modern therapies which weren't even available 5 years ago. Whatever your reasons, I'd seriously reconsider.

    Good luck, whatever you decide.

  • I looked into Chris Wark, and am very familiar with similar approaches. I have to say I was highly suspicious of him, having known someone very similar many years ago who ended up in jail due to taking money from people under false claims, while sincerely believing he was following a righteous path. He was wrong, but refused to accept his error.

    I'm sure he and others like him genuinely believe (and I use the word specifically) that they are 'fighting big pharma' and promoting 'natural methods' but in his case my guard really went up when I saw the consultation fee and realised how he's - probably unwittingly - preying on the good faith of those in our position who are wary of entering into conventional treatment.

    I am a big fan of complementary medical approaches (and have been most of my life), but also a realist. I think such therapies can help stimulate the body's ability to heal itself of some conditions. I eat the right things, ensure I get enough of the vitamins that prevent (non-CLL) fatigue - If I had to change one thing, I'd exercise more, but with CLL that's not always easy!

    But I also recognise (and have witnessed among friends) how depending exclusively on such an approach and shunning the ever-improving CLL medications can lead to an earlier death. There, I said it.

  • Hi BCTexas. Are you still debating about starting on the trial? I started on it last Wednesday. I only had a high wbc, night sweats, and swollen lymph nodes but I feel fine. But the lymph nodes are starting to bother me and I didn't want to wait until I was really sick before I did something as I watched my neighbor die from mantel cell lymphoma. She decided too late to try to get into a trial and I didn't want to make that mistake. The first trial I was considering got full while I was waiting for approval for coverage for the IB but luckily they doubled the number accepted in the second one. I've only had 3 doses of IB and will start Venetoclax in 3 months - ramping up over a period of time. Good luck with your journey and research.

  • Hi,

    I decided to go on the trial while I still had the chance. I feel the same way as you.. I didn't want to risk waiting too long. And I didn't to miss the trial. I start IB on October 10th.

    How are you doing on IB?

    BC

  • Hi BCTexas

    Did you get to start on the 10th? Are your nodes shrinking yet? I'm in my 2nd week of adding venetoclax and I feel like I've been given a new lease on life! All the best to you!

    Jim

  • I have to wait until Tuesday to start IB. They want to check my blood work first. That's good news you are doing well on Venetoclax. My fatigue is getting worse so Im hoping I start feeling better after I start.

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