CLL : Stage Zero.

[vinnet]

I am 65 male in India. I want to find non chemo options to cure or arrest disease progression.

Vinnet

[Newdawn Administrator]

Hi vinnet,

It's hard to know how to advise you because I'm not familiar with the treatments available to you in India and from your staging, you are a long way from needing treatment at the moment anyway.

In terms of something to 'cure or arrest' disease progression, you're asking for the answer we all seek but have yet to find. CLL remains treatable but incurable at present and whilst many would tell you that they've found dietary or other methods of slowing progression, there seems little firm scientific evidence to support it.

Ibrutinib and the BTK inhibitors are the non chemo many seek in place of chemo but it's not readily available in some countries (including the U.K.) for the treatment naive or those without certain genetic deletions. Again, I have no idea of availability or eligibility in India. Have you discussed these issues with your doctors?

Here's a list of the present treatment regimes used though it may not fully answer the question you're asking.

cancer.org/cancer/chronic-l...

Best wishes,

Newdawn

[vinnet in reply to Newdawn]

Thanks for the reply. In India all the treatments are available. Personally, I wish to avoid the chemo or similar options. I keep reading in internet that many people have cured cancer through diet etc. Even if not confirmed s ientifically, I wish to know what these people did and I will give the same a try...

If no cure, at least slow the progress for 5 to 10 years....

thanks again

vinnet

[Newdawn Administrator in reply to vinnet]

Vinnet, whilst a healthy, balanced diet and exercise will strengthen you and aid your overall well-being, I'd advise serious caution about fantastic, alternative claims that may come your way. Some supplements recommended are contra indicated with blood cancers and there are people out there intent on prospering from other's misfortune. It could even be that you are amongst the 33% of people who never require treatment. Learn to be your own advocate and balance the advice you are given against the knowledge you acquire.

I appreciate you'll know this but over the years I've heard many of the miraculous claims and remain open minded but very, very cautious.

Warm best wishes,

Newdawn

[alwaysdancing in reply to vinnet]

Hello Vinnet,

I was diagnosed with CLL a year ago (I am 67) and I am on watch and wait. Though I cannot say for certain that non-invasive options work I am a patient with the Marino Center in Cambridge Ma. Though I follow a diet (not strict but healthy, lots of vegetables and fruits etc) and I have a great doctor with the Mount Auburn Hospital also in Cambridge Ma I follow a non-invasive and homeopathic regime of supplements prescribed from the Marino Center: green tea extract, Super Bio-Curcumin and Black Cumin Seed oil (but please know that these are NOT cures) but I do believe that food is medicine (and also not a cure) but the healthier you eat the better you may feel. If you would like I will send you the information that I have been given regarding supplements, dietary suggestions, exercise, etc. I also follow Dr. William Li and this is his Website angio.org/

I hope that this information is helpful.

Best wishes,

Barbara

[vinnet in reply to alwaysdancing]

Barbara

Please do send. It will be helpful

Rgds

Vinnet

[jchays1 in reply to Newdawn]

If you wish to try an integrative (both traditional and alternative) my suggestion would be to see a hematologist or an oncologist who also practices alternative medicine. There are some integrative medicine practices that look at both the traditional and alternative - and hopefully will make sure that whatever diet or dietary supplements they are suggesting will not make the CLL worse. Do not try to do it on your own - seek professional/medical advice. Many traditional doctors are now incorporating a lot of valuable alternate treatments.

One thing my doctors have told me is to focus on reducing stress as well. I am working with a therapist and a psychiatrist to help me manage all the stresses in my life (not simply the stress of dealing with CLL - but any/all other stresses). I have also been diagnosed with B-Cell Lymphoma - a subset of CLL - so I am trying very hard not to stress - as I am sure stress is not good for the B-Cell Lymphoma as well.

I will be going in for PET/CT Scan to see if the Lymphoma has spread - and to find out what 'type' of B-Cell Lymphoma I have (there are many types).

Saying prayers for you - and for all - who are dealing with CLL - or any other type of cancer or disease. Many Blessings to all, Judi

[vinnet in reply to jchays1]

Thanks.

I read in Louise Hay book about how she cured her cancer without chemo etc. She talks of using psychotherapy!! Can u help me understand what exactly you are receiving from psychoyherapist? I am keen to locate similar in my city.

best of luck.

[jchays1 in reply to vinnet]

My psychiatrist is helping me deal with my OCD issues - which increase my stress levels. She has suggested various ways for me to deal with my stress issues - such as meditation and gratitude exercises. Every person has different issues which trigger their stress. At my weekly sessions with her I share with her what those issues are - and we discuss specific ways I can deal with those issues without having them trigger stress, anxiety. and insomnia in my life. A few of the websites she has recommended for me are: insighttimer.com/ and gratefulness.org/ - there are many others as well. Walking in nature - slow deep breathing - practicing compassion and gratitude - getting a good night's sleep - meditating - doing Yoga, Tai Chi - are just some suggestions of helping me reduce stress in my life. One of my other doctors also recommended I read the book, "The Open Focus Brain" - which also helps me reduce stress - as well as the website: openfocus.com/ I also read a lot of books related to being in the present moment - such as "The Power of Now" by Eckhart Tolle (and other books by Eckhart Tolle) - as well as books and guided meditations by Deepak Chopra. I hope some of the above will be of help to you. I am not a professional - merely someone with CLL who is trying to keep my stress levels under control.

[vinnet in reply to jchays1]

thanks..

I have read deepak chopra and also power of now..

I am doing yoga for past 7 years!! I will check out local psychiatrist.

Dr coldwell says the cause of cancer is stress!!! I have bought his book INSTINCT BASED MEDICINE.

[vinnet in reply to jchays1]

I am now one year into this CLL. Besides low body energy, i have started to feel signs of depression, helplessness ..

Does CLL creates chemicals which cause depression? Or it is all psychological?

best

vinnet

[MsLockYourPosts Passed Volunteer]

I agree with Newdawn - be very wary of miracle cures. A healthy, balanced diet and exercise will serve you well. You might ask to have your vitamin D and B12 levels tested, but don't supplement if you don't need to. Work with your doctor if your levels are low. Both lymphoma.org and LLS.org have good booklets about CLL which you can read on line or download. CLLSociety.org has good information and a list of links to CLL specific resources.

[vinnet in reply to MsLockYourPosts]

Thanks pkenn.

I wish to connet with few CLL survivors, who were diagnosed

5 to 10 yrs ago....

[Cllcanada Top Poster CURE Hero in reply to vinnet]

I was diagnosed 19 years ago...

Here is a list of reputable links... lots of alternative facts and fake news in CLL on the internet.. beware...

You can download this for future reference...

cllpag.ca/CLL%20RESOURCES%2...

[MsLockYourPosts Passed Volunteer in reply to vinnet]

14 years for me. I totally agree with Chris about making sure you are connect with reputable resources!

[Glees]

One area that is often overlooked is dental health. Make sure you have your teeth cleaned and checked regularly. It was through many teeth infections that my husband eventually discovered that he had CLL.

[vinnet]

Thanks for this input. I have gone through major teeth work in past few years....

[PaulaS Volunteer]

Hi Vinnet,

You’re interested in connecting with CLL survivors who were diagnosed 5 to 10 years ago. Well I was diagnosed about 10 years ago, and it was 2 years ago that I needed treatment. So, eight years on “Watch and Wait” wasn’t too bad.

However, CLL is a very variable disease – people get many different forms of it. I suspect that the relatively slow progress of my disease was largely due to my having certain genetic markers that usually mean CLL moves more slowly. There is nothing we can do to change our genetic makeup, but there are various things that can improve our chances on our journey with CLL. The following posts give lists of simple, practical things that can make a difference. Most have been said before by others on this site, but it seemed useful to gather all the points together in one place for easy reference. Hopefully you’ll find some things that are relevant to your situation.

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

Do let us know how you get on, as you continue on your journey. Just joining this group is a great start.

best wishes,

Paula