Hello, I'm 63 and was diagnosed 12 years ago. I have been in the watchful waiting phase ever since, with WBCs and other counts in the normal range. I have, however, used several complementary therapies under medical supervision including chelation and various detox methods, to improve my overall health. Although I can't specifically attribute my continued positive results to these treatments, I would like to hear about others' experience with complementary medicine.
Experiences with complementary therapies? - CLL Support
Experiences with complementary therapies?
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I was diagnosed just over a year ago and am in watchful waiting with close to normal WBC's. What are the detox methods you used?
Far infrared sauna, several specially compounded supplements to help the liver detox (one called Nutriti-detox), changed my diet to eliminate refined sugar and flour, some colonics. The chelation dealt with heavy metals.
After my first relapse I have started to change my diet and lifestyle. I also think about getting an infrared sauna. However I cannot find any valid information if Far Infrared (FIR = IR C) or Near Infrared (NIR = IR A / IR B) is better for detoxification.
Bleimsner, why did you choose a FIR sauna and not a NIR sauna?
I hesitantly reply to this simple information request under fear of harsh damaging hyper-criticism.
I have carefully and cautiously used complementary treatments which have resulted in my CLL going into full remission for the last three years from being readied for chemotherapy.
Before and after this point I have extensively researched the subject beyond either popular or dogmatic opinions and have over 100 respectable clinical papers and over 250,000 words of notes supporting my treatments. This plethora of research is often overlooked. There is a variety of research indicating different types of complementary medicine and your choice should be carefully taken.
As I am glad I have avoided the varied negative repercussions of standard treatment.
I can thankfully support some complementary treatments but do not want to be spuriously criticised for my positive clinical outcome and attitude.
Hi phenry60,
Great news on the fact of your remission. Please share with me and others what you have done!
Ignore the fear of people scoffing and saying it does not work, it did for you, why wouldn't I give it a try?
Please tell us what you did.
Cheers
In my view complementary or alternative therapies should be able to be discussed freely here. We can all make our own decisions. There is little money to be made on natural therapies so probably they are underfunded which is understandable. Many drugs we use came from the natural world. I dont believe anyone should be discouraged from offering anything that has helped. Most MDs know little about nutrition etc. They have no time to keep up with it all. I think we all have our collective well being at heart!
You and I are on the same page. I, too, was and am hoping to avoid the damaging side-effects of the current chemotherapy drugs, although there seems to be some progress in this area with new classes of more targeted drugs.
Among the therapies I have used are chelation, high-dose folic acid (encourages red blood cell growth), nutrition (no refined products, sugar, organically grown when possible); removal of mercury dental fillings, and lots of liver detox, using co-factor supplements and including far infrared saunas.
Please share with me some of what you have done.
Hi Bramidan, Thank you for your ideas and support. You have opened doors. Bests phenry60
Hello.....just wondering what if anything replaced those mercury fillings?
That's fantastic!!!...would u be willing to share what have u done?
hi Bchittineni, I've put some ideas under Bramidan,main heading. Thanks for your interest. Bests, phenry60
i am on w&w since i was diagnosed 5 months ago. I am keen to know in detail about what u did to become cll free?
Being in India, a vegetarian and religous minded, I truely believe in getting helped by alterative therapies...
in reply to phenry60
Thanks Henry-I would love to know more-please share if you like. Stay well.
phenry60 in reply to
Hi Kinziodian. I've put some treatment ideas under Bramidan's main heading above. Thanks for your interest. Stay well. Bests, phenry60
can you please tell me what natural treatment you took and how long
Hi Nehla,
Also all the stuff I've written above to others on this site.
Longer reply:
+8 years scientific research and many practices. its about taking it all serious and personal but keeping it interesting and fun , I've reduced stress a lot.
Lots more details. I've been trying to write a book/essays / PhD but finally settling for just being and enjoying life. Many people will try to correct you for these practices, they usually end up in an endless stream of chemotherapy. I've been stable much to the bewilderment ( but agreement) of my consultants. Many, many good books and articles to read for the serious. Practice and being is most important.
Short reply:
Daily mindfulness/ Tai Chi exercises for about 1hr, turmeric, green tea, vit. D3 tablets daily; tasty anti-cancer diet; supportive wife and friends, limiting stressful & building positive situations; more contact with nature; also good physical exercise (like swimming, long walks and bicycling). Discovering things meaningful.
Good luck, all this really works and keeps you in good health generally.
Patrick
Hi Bleimsner
Why would you expect critisism when therapies were carried out under medical supervision.
I would expect your medical expert to be shouting from the rooftops that this therapy was instrumental in curing your CLL. presuming you did not have any treatment for it. What was your ALC at diagnosis ? How was your success monitored and measured through your regular blood tests. Would your expert be open to sharing your results?
I have never heard detoxification being mention as a cure for cancer . I'm sure the specialist cancer hospitals will be very interested in following up your history.
Bubnjay1
Two things to note: in my post, I at no time said I was CURED of CLL.. I also said quite clearly that I could not positively attribute any of the complementary therapies in particular with my good outcomes (although I do believe they have contributed.) I see my haematologist once a year, who has told me that "my body is dealing with the CLL" but is not particularly interested in what I may be doing outside his practice with respect to complementary therapies.
With these two caveats, I have used several GP-supervised therapies.
Early after my diagnosis I visited the Inspire Health clinic In Vancouver, B.C. and took their excellent program empowering people with cancer to help themselves in addition to their conventional treatments. This includes nutrition but also complementary therapies including traditional Chinese medicine, chelation and yoga and meditation and other therapies.
I'm 64 just got diagnosed in October 16 I will occasionally break out n hives. Feels like a really bad sunburn. Last for maybe 20 minutes max. Itchy as heck. I'm n the wait and c phase says doctor. Also my rb1 gene is gone. Know anything bout that
Bleimsner....Its just too much of tease to bear. I wouldn't worry about criticism for any alternative types of healing that you did. I am on a strict Macrobiotic diet ad i also exercise. My doctor said"You are the healthiest patient that I have!" kind of hard to believe that a doctor would say this to someone with CLL. My dietary changes haven't cured me,but they have given me a lot of vitality. I can still work and i wake up at 8am and am active until 12:30 AM,most days. My counts stayed pretty much the same for the last 15 months,since diagnosis. Please consider sharing what you do....it might actually inspire or help someone. Incidentally, i admire and respect anyone who can figure out a way to slow the progression of CLL or even cure it. And,I'd be just as thrilled to hear that someone using the holistic approach cured themselves or even bettered themselves,regardless what mode of healing they used. I'd bark at the moon or stand on my head and whistle Dixie,If I thought it might work. And,this doesn't mean that I don't respect medical cures...I do. But smart people would be open to anything that is is a true healing procedure,that does no harm.
I too have barked at the moon, whistled Dixie while standing on my head and would happily undergo countless other contortions to evade CLL. While remaining intelligent, questioning. relying on evidence, trusting trustworthy complementary practitioners, thinking holistically.
I am working with an integrative doctor who specializes in cancer. He has me on a vegan, plant-based diet, no processed foods and lots of supplements to support my immune system. He also tested me for heavy metals and has me on a supplement to detox from them. He did say I am eligible per insurance for chelation from lead, but I've read that if this is not done slowly, it can make you really sick, so I'd love to hear more about your chelation. He also tested my nutrients and I'm low in almost everything, so he has me mostly on B-complex since these help you absorb the other vitamins.
For exercise I use a rebounder (mini trampoline) since that is the best exercise for your lymph system. I try to do mindful based stress reduction meditation due to my stressful job, but I'm not very regular. And I juice on the weekends.
I've been in W&W for three years and my numbers have not changed since dx. Whether these things have contributed, I don't know, but I didn't want to just sit around and watch & wait - I had to do something.
Thanks for sharing that. Aside from fatigue for a few hours following chelation, presumably while my body dealt with the mobilized heavy metals, I had no other side-effects. Your integrative doctor sounds like he or she does much the same as mine, and I also pay close attention to diet. The rebounder is excellent too. Like you, I didn't want to feel helpless while waiting, and there is so much that can be done. But it's also a balance of living life and investigating complementary treatments.
I basically do the same as you, Carrot Top except i juice everyday. Also am retired sono stressful job. I was dx wdc 19 a yr ago, now wbc at 14 but hasn't chanced in last 3 months. Like you, i feel wonderful!
If all your counts are now in the normal range, please let us know the levels that your ALC were at at diagnosis and how they have reduced. I found it interesting to visit the Inspire site and here is the link. Sadly we in the UK are too far away and that kind of assistance and support in the uk is extremely expensive. However, interesting thank you for posting. Long may your good health continue.
Bubnjay1
When I was diagnosed 12 years ago, my while counts were elevated, although I don't have the numbers with me. My sister also has CLL, so I was tested and found to also have it. As you know, it can run in families.
Inspire Health has been a pioneer in treating cancer holistically in the province of British Columbia for more than 20 years, but only became provincially funded in recent years. But theirs is a beautiful model for the whole health care system, and slowly, very slowly, this holistic, complementary approach is spreading. Ottawa, Ontario now has a Center for integrative Healing, with naturopaths trained in cancer treatment, nutritionists and the like--but much of the treatment must be paid privately.
You were on w&w for 12 years? I am 65 and really want to use alternate methods to remain in w&w for 10 to 12 years. For sure i will not go for chemo...
It will be a great help if you can share as much as you can about your diet, exercise, meditation etc etc...
regards
vinnet
Hello, I was diagnosed at age 50 and am now 63, but Please be clear that I am not CURED of CLL, I still have the disease, but so far it has not progressed. That could change, and if so, I would certainly have to consider the existing chemo drugs, including ibrutinab, which is showing good results.
As explained in other posts, I underwent medically supervised chelation to eliminate heavy metals, I have used a sauna extensively to help with detox, I have taken vitamin supplements with the co-factors to help with liver detox, I take a high dose of folic acid to promote red blood cell growth, and I do not eat refined foods, including sugar.
I hope this is helpful, and know that in India you have Ayurvedic practitioners.
Thanks for the reply.
I am not bothered about cll cure! If it remains static and does not bother me for 10 to 12 years, I am done. I will try to look at your other posts too and try to include your ideas in my daily life.
Baba ramdev Indian yoga guru is all over youtube on cancer healing thru yoga pranayama and ayurveda medicine.Not many taker as yet. Perhaps I will try some parts..
google.co.in/url?sa=t&sourc...
regards
vinnet
Hi, and well done! I too am on W&W for 13 years now, needing no therapy! Actually my W BC are going down the last 5 blood tests I've had, and I'm thrilled of joy, hoping that one day I will be cured! Never lost hope and never stopped research on the CLL
Thanks, we are among the lucky ones. I may have unleashed unrealistic expectations with my post of a "miracle cure" . . .
Congratulations melania.
Anything specific you did to get w&w for 13years? I am certain that I will not go for chemo etc. and desire to learn from you/bleimsner and similar others on actions I can take to try ro slow/ halt my cll progress.
vinnet
Hi & God bless. Sleep long hours, rest, eat healthy, vitamins and spent 2 months on an island swimming and sun bathing after noons Avoided all toxic negative situations. To me to be in tranquility is a must,, and doing things u love. Fresh air, a good book .. This worked for me as I had a lot of stress in my life before. I pray for the best outcome for all cll sufferers
I hope this is helpful to all those that were interested and requested it. Thank you, Best wishes.
A non-invasive treatment for CLL included for me:
Many important treatment details: here is an outline. I believe that the Tai Chi/Qigong is the most important but I have used them together. Having a supportive partner/friend is also essential. Intent and open regular practice is core in helping your immune system.
1.Start working towards an attitude that you can improve your condition.
2..Find a local quality Tai Chi/ Qigong practitioner. TC/QG is very important to regain your immune system and general health to treat CLL and guide it into a stable remission. (Your teacher should be knowledgeable and resonate with you as you will be seeing him/her once a week.
You will be learning the methods for about one year with daily improving practice on your own.
iii.Your teacher needs to be competent and appreciate its health purposes. You can start looking on the internet.)
3.Change your lifestyle to less stressful situations. Avoid tense and conflictual situations
3..Keep up a physically and mentally healthy routine.
4..Rest, take breaks as necessary – don’t work to fatigue.
f.Do things you enjoy.
g.Reduce encounters with potentially infectious people.
5.Change to a healthier diet (i.e. Mediterranean style/Anti cancer diet -
E.g.‘Cook with Foods that Fight Cancer’ PhD Richard Beliveau & Denis Gingras has tasty recipes and good biophysical explanations of foods.More fruits, vegetables, smoothies, less alcohol.)
6.Vitamins/herb extracts: I take – Turmeric, Vitamin D and Green Tea.
i.Dose and type purchased are important.
Start as soon as you can and keep learning, faith and practice.
I have reputable academic papers supporting each of these points but I’m having problems putting them together cohesively and concisely.
Salut
Such a breath of fresh air to hear all of these treatments do not involve drugs. There is also a man named David Lingle who has gotten rid of his CLL. He talks about juicing, detoxing the liver, getting rid of heavy metals and having a positive attitude among other things. We are all in this together so let's share information and kick butt!!!
Thanks, what David has done sounds similar. As a newbie to this site, I am delighted with the wealth of information and experiences people are sharing. It's a fabulous resource and really empowers people with knowledge of all kinds.
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