I'm new here.

[Nelka]

Hello, I live in Chicago, USA. I practice Macrobiotics for over 20 years. Was diagnosed with CLL in March of 2019. Would like to know more about holistic ways of treating it and the role of supplements. Thank you, all and Happy New Year!!

[GMa27]

I go to Acupuncture.

Was on W&W 12 years. Had chemo and doing great. 16 months remission. Acupuncture helps keep building my immune system. Helped during treatment. But nothing holistic will take the place of treatment when the time comes. 💕

[Nelka in reply to GMa27]

Thank you!! I'm also doing it about once a month.

[Canuck901 in reply to GMa27]

Acupuncture’s is great for wellness , sleep and many health concerns one of the ancient medicines that’s been around thousands of years

[AussieNeil Administrator in reply to Canuck901]

Likewise blood letting has been around for thousand of years, bcmj.org/premise/history-bl...

but we found out that it is not an evidence based medical procedure. It was also thought to contribute to the premature death of a famous US president - George Washington.

Acupuncture - "The conclusions of numerous trials and systematic reviews of acupuncture are inconsistent, which suggests that it is not effective.[10][13] An overview of Cochrane reviews found that acupuncture is not effective for a wide range of conditions.[13] A systematic review conducted by medical scientists at the Universities of Exeter and Plymouth found little evidence of acupuncture's effectiveness in treating pain.[10] Overall, the evidence suggests that short-term treatment with acupuncture does not produce long-term benefits.[14] Some research results suggest that acupuncture can alleviate some forms of pain, though the majority of research suggests that acupuncture's apparent effects are not caused by the treatment itself.[9] A systematic review concluded that the analgesic effect of acupuncture seemed to lack clinical relevance and could not be clearly distinguished from bias.[15] (My emphasis)

en.m.wikipedia.org/wiki/Acu...

Neil

[Canuck901 in reply to AussieNeil]

Don’t knock it until you’ve tried it , there is a reason why they have become so popular over the last 10-15 years. It has helped immensely with sleep and some of my friends allergies

[AussieNeil Administrator in reply to Canuck901]

A while back I got more relief from acupuncture for really bad back pain - to the extent that I consulted a surgeon specialising in back operations, than I did from anything else I tried. However, it was the electrostimulation of nerves causing the pain via a TENS machine that provided the relief via conductive needles, not needling mythical meridian lines of Qi/Ch'i force.

sciencebasedmedicine.org/pu...

Neil

[Hidden in reply to AussieNeil]

This is really not CALL related, but I saw you mentioned a Tens machine. I have been using one for years. I was a little confused by your comment, I just started my first cup of coffee😒Did the Tens unit help, and if so, did they ever suggest a time restriction while your wearing it? I have received different options on this. I have had bad spinal issues for years (herniated discs, buldging discs, sciatica ect)

Thank You

[AussieNeil Administrator in reply to Hidden]

No, a physiotherapist used acupuncture needles in a therapy session to stimulate locked up muscles and get them to relax. My point is that the physiotherapist was using the marketing power of the word acupuncture to provide electrostimulation via a TENS unit - which worked to provide temporary pain relief. Likewise other providers of medical services can dress up what they are doing by calling it TCM or acupuncture, etc, while providing something else (like massage say), that is likely to help.

Neil

[Hidden in reply to AussieNeil]

Thank you

[PlanetaryKim]

Hi Nelka. And welcome! Many of us here try many different strategies for healthy living and healthy eating to keep our overall health as strong as possible in hopes of forestalling treatment and leading best life we can. However, it does seem to be the case that when the time for treatment comes, nothing else besides treatment really gets the jobs done. If you are on Facebook, you might be interested in a group there called: CLL Warriors - ANTICANCER LIVING / Leukemia diet, health & wellness!

[MsLockYourPosts Passed Volunteer in reply to PlanetaryKim]

You beat me, Kim. I was just going to suggest the same group ? Nelka, I think that group would better fit your current interest.

[Nelka in reply to PlanetaryKim]

Thank you!! Just joined the group. Love its slogan.

[louie48]

Howdy Nelka, I don't know squat about holistic stuff, but I wanted to say welcome and to point out that this website is full of all kinds of info, and encourage you to explore the posts and discussions here. Blessings.

[johnl]

Nelka, I live in Chicago too, was Dxed 18 yrs ago tried different supplements on and off over the years. I'm not sure how much they helped, but I did go 16.5 yrs before I started treatment. Right now all I take is Vit D and a multi. All that other stuff can be hard on the liver to process and some interfere with the I/V in now taking.

You might want to read the book N of 1 it's about a guy who put his CLL in remission with exercise, diet and supplement prescribed by a Dr. from Evanston. I'm not endorsing this, because it's only one patient and there have been cases of remission for unknown reasons, but it's seems like something you might be interested in.

john

[Nelka in reply to johnl]

Thank you!! Yes, I’ve read the book and contacted Glenn Sabin. He recommended visiting the Block Center. I did it on Dec 5 and got a lot of supplements. As you said, I’m also concerned with the affect on my liver. I stopped taking all of them except Vitamin D for now.

[lankisterguy Volunteer]

Hi Nelka,

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There is a Pinned Post that you may want to read (especially the very detailed replies by AussieNeil )

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healthunlocked.com/cllsuppo...

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oicc.ca/en/blog/post/103?ut...

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healthunlocked.com/cllsuppo...

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Len

[Nelka]

Ha-ha

[Hidden]

i've seen all the episodes or Dirk Gently Holistic detective. I was upset when they cancelled it.

[AussieNeil Administrator]

While many medicines are derived from foods, you would generally struggle to ingest sufficient food for a medicinal effect:

healthunlocked.com/cllsuppo...

I'd say that a very common reaction to receiving a cancer diagnosis is to review our diet (and it would be rare to NOT find ways to improve it). Importantly there is far better evidence for exercise improving survival than dietary changes - plus they tend to go together.

CLL has the reputation of being incurable, but spontaneous remissions do occur. Quite a few have been documented, but the statistics highlight a FAR greater likelihood of it happening if you are IgHV mutated. Reducing inflammation by reducing weight and improving fitness level also appears to improve your chances.

Here's the first post on my two part analysis of the likelihood of dietary changes curing CLL:

healthunlocked.com/cllsuppo...

Finally, with respect to Glenn Sabin, I was surprised to learn that he didn't know that he fell into the group with a favorable likelihood of having a spontaneous remission. Incidentally, he doesn't like that terminology, for obvious reasons. Also, he had a splenectomy to control his CLL. Glenn has had CLL a long time, so most of us have forgotten that splenectomies were a recognised treatment back when we didn't have any of the powerful, effective drugs we have today. Then keep in mind how dedicated Glenn was in maintaining his exercise - even when extremely ill due to his CLL.

Finally diet. The case study about Glenn's remission attributes his remission to the quantity of EGCG from green tea Glenn was taking. Mayo Clinic phase 2 clinical trials showed that massive amounts of EGCG reduced node sizes and lymphocyte counts in the majority of those in the trials - but with the risk of transaminitis - liver poisoning. So what's the most likely reason for Glenn's N of 1 success and if you are IgHV unmutated, could you also achieve it?

One if the authors of the Mayo Clinic EGCG reports, Dr Neil Kay, stated in a Patient Power interview, unfortunately since deleted, that CLL patients shouldn't take EGCG preparations, "because we don't know what is in them".

Neil

[Nelka in reply to AussieNeil]

This gives me a lot of food for thoughts. I need time to process it and do more research. Im so grateful for your responses. Thank you!!

[cyclist123]

The second link leads to an asco paper in which I found the following line of the first case study of spontaneous remission to be confusing.."IgVH rearrangement consisted of unmutated VH1-46 usage. "

[Nelka in reply to cyclist123]

It’s all is so confusing. Up to this point I was sure I knew the path to follow, but more I learn about CLL and conventional treatments, more I feel lost. How do you know who and what to trust?

[Kokobean]

We tried a holistic approach when my husband’s CLL began progressing a little over a year ago. Aside from discovering that he probably shouldn’t eat dairy and cleaning his gut, he started treatment with ibrutinib about 8 months later. My husband is 13q, 11q, and unmutated so that probably factored in. I don’t know if an indolent CLL would respond to holistic medicine, but I don’t know how you would measure that anyway short of remission. Best Wishes.

[Nelka in reply to Kokobean]

Thank you. And the best wishes to you and your husband.

[NaturalWaze]

Hi Nelka,

I wish I had an answer for you, as I wonder the same thing. I was macrobiotic in the 90’s for a couple of years and still eat relatively healthy...

Glad to learn about the CLL Facebook group and just joined!

[Nelka in reply to NaturalWaze]

21 years ago I recovered from terminal non-Hodgkin lymphoma (4th stage, small cells, aggressive form) with just Macrobiotics. I haven’t seen a doctor or taken a medication in 21 years. I trust TCM and MB much more than our healthcare. But since both, Michio Kushi and my Chinese doctor, are gone, I feel lost. I’m now in search of a great holistic specialist to help me navigate out of CLL in corroboration with my oncologist.

[NaturalWaze in reply to Nelka]

Wow, that’s quite a story, and yes, I can imagine feeling lost without these knowledgeable supporters.

I, too, would love to find a great holistic specialist. Thus far I have not found anyone I really trust (been to naturopath and functional medicine doc).

Did you have a session with Glenn Sabin? Would you be willing to tell more about it (can even DM me if best)?

Good luck as your journey continues. Sounds like you have already done such hard work on your health, and perhaps laid the groundwork for this next chapter.

[Nelka in reply to NaturalWaze]

Talked to Glenn via emails, not in person. I’m trying to give my body a chance to get rid of CLL naturally. I follow Macrobiotic’s principles of lifestyle and diet and my daily schedule is coordinated with the circadian clock. I also follow an elaborate exercise schedule. So far, I’m feeling great, full of energy, and have normal sleep and all bodily functions. But I know that main battle is coming since I have 17p deletion and 13q non-mutated. So, I’d love to find someone who can guide me through tough times. I’ve been to the Block Cancer Center. Have mixed feelings about them. So, I’m still looking...

[MsLockYourPosts Passed Volunteer]

There are now MDs of Complementary medicine who work closely with oncologists. Check for one in your area.

[LovecuresCLL]

What I love about this site is that it is very science oriented. Nutrition is important and everyone wants to know how it works.

[Ellieoak]

There is a support group in Chicago and it meets once a month. CLL Society sponsors the group. It is held on the third Tuesday at 7:00. It is at the Catholic Kolping Society on Elston. I hope you can join us. Anna

[Nelka in reply to Ellieoak]

Thank you. I’ve been there. A very nice group!!

[elm1 in reply to Ellieoak]

I live outside of Chicago. Where does that group meet?

[Ellieoak in reply to elm1]

Dear Elm1, yes we would love have you. We meet on Zoom. The third Tuesday of every month. I just need your email so that we can send you the information. Thank you for contacting us. Stay safe. Anna

[elm1]

Ok how to I send it privately

[MsLockYourPosts Passed Volunteer in reply to elm1]

Use Chat.

[Newdawn Administrator in reply to elm1]

Just click on Ellioak’s picture avatar and her profile page will come up. On the top header you’ll see ‘Message’. Click on that and you’ll see the message box. Just send her a private message and press send. It’s very simple and confidential between you.

Newdawn