newly diagnosed

[Oxygenlover]

my friend is newly diagnosed with CLL. It’s not at the stage of needing medical intervention. She wants to be proactive. Does anyone have experience of natural health treatments that work? Such as oxygen therapy or high levels of vitamin c? I would be very interested to hear of positive outcomes.

[neurodervish]

Hello OxygenLover,

Welcome. You've come to a great place for info. The best way to start is to check out the Newly Diagnosed section of this forum. healthunlocked.com/cllsuppo... It has answers to every major question we've all asked here.

CLL is a complicated illness, and we don't all fit into the exact same category. So it's important for your friend to get a better understanding of how the disease progresses and when and how it can be treated.

This is one of my favorite videos on CLL. youtube.com/watch?v=Ybowa1Y...(Not working as expected?)

To answer your question about supplements, this section titled "THINGS WE CAN DO to improve our CLL journey" may help. healthunlocked.com/cllsuppo......

Hope this helps 🙂

[cajunjeff]

Hello Oxygen lover. Virtually every top Cll doctor encourages us to eat a healthy diet, exercise and stay positive. Cll can degrade our immune systems, and since cll is a comparatively slow growing cancer for most, it’s a bit of a war of attrition. Staying healthy helps fight the problems cll creates.

That said, I am not aware of any natural remedy proven to “treat” our cll. As with all cancers, there are many anecdotal stories of people with cll who believe substances like green tea or special diets have treated their cll. But there are no natural treatments proven by accepted scientific methods to be effective against cll. (If they ever have a proven natural remedy recommended by my docs, I’ll be first in line, who doesnt want a natural treatment or cure?).

So far as I know, the vast majority of top cll doctors worldwide do not have any supplement or such they recommend to treat cll. Certainly we are encouraged to eat healthy and exercise, advice that is good for everyone able.

[AussieNeil Administrator]

Hi Oxygenlover and good on you for trying to help your friend.

In addition to the two excellent replies you've already had, we do have some previous information on the use of hyperbaric oxygen with respect to CLL

healthunlocked.com/cllsuppo...

That and the evidence for many other suggested natural health treatments are covered in my replies to this post: healthunlocked.com/cllsuppo...

With respect to high dose vitamin C, I noted that "Vitamin C has been shown to enhance the proliferation of T-cells and possibly B-cells (which includes CLL), but the evidence is not conclusive in humans. We need human in vivo studies to truly know the effects". There are a number of references to previous discussions on vitamin C in that section, including, I think the shared experience of one member, who tried expensive IV vitamin C infusions for a year and reported no change in his CLL.

There's much more that your friend can join and read or you can share in our Pinned Post section: healthunlocked.com/cllsuppo...

With respect to natural health treatments, CLL is a chronic illness, so what works best is doing what we can to reduce our risk of infection and improve our overall health, so that our body works for us. The best evidence is for exercise - improving our physical fitness. That makes sense when you consider that good blood flow is how every cell in our body has the best chance of having adequate oxygen and nutrition (supported by a healthy diet) and waste product removal.

Neil

[Living_and_Learning in reply to AussieNeil]

Your response in this post was excellent: healthunlocked.com/cllsuppo...

[Oxygenlover in reply to AussieNeil]

This is very useful too. Points taken.

[JigFettler Volunteer]

Hallo and Welcome!

Great responses above, which I enjoy reading despite being in my 9th yr with CLL.

It's a long journey, and thanks to much development many treatment options exist. That's reassuring and also adds complexity and choice. This forum is an excellent resource to bring your questions and dilemmas.

So, no such thing as a stupid question!

I would add, there is a lot of information and guidance out there. Many conflicts exists, erroneous and frankly wrong stuff too. Again, here's a strength of our Forum. There's not much out there that has not been encountered by someone on the Forum. So do ask and share your questions and concerns. Do share your joys too, and your successes.

Meanwhile, live well.

Jig. UK based too.

PS

If you "lock" your post you will attract more response.

healthunlocked.com/cllsuppo...

Look at the pinned posts to learn how. I attach one link that explains how.

healthunlocked.com/cllsuppo...

This post is excellent and worth reading.

[LeoPa]

Short answer: no. There are no quick fixes or easy solutions. The best thing for your friend to do is to come to this site, set up a profile and start learning. There is much to learn from others.

[Thursday45]

Hello. It’s so good that your friend wants to be proactive. A first step in learning to live with CLL. The diagnosis is a huge psychological shock, so it will help her just to be there and to listen, go gently with the advice. At first, I found it very difficult when friends were telling me their ideas as to how I should improve my health. It’s all very personal, we each need to find our own ways on the healing road. If she has asked for your suggestions there are plenty in the replies here. It has helped me to work with a Reiki healer, to have a regular massage, to walk a lot, to exercise with small weights, to start learning some Tai Chi, to see a nutritionalist and to read uplifting books. There were dark days at first when I could barely get out of bed, I needed time to assimilate my diagnosis. She has a good friend, so she is not alone.

[Oxygenlover in reply to Thursday45]

Thank you I will suggest she does when she is ready. Thank you to everyone bothering to reply. Much appreciated.

[neurodervish in reply to Thursday45]

I couldn't agree more. I didn't tell anyone about my diagnosis, because I didn't want them to treat me differently. I heard people in my yoga class explaining that unresolved anger causes cancer. Can you imagine having that conversation? I couldn't. I had seen a ND for years, but when she turned out to be an anti-vaxxer, I lost all faith in her and switched. I'm so grateful to have found this group. The most important lesson I learned here is that informed patients have better outcomes, and that's scientifically proven. pubmed.ncbi.nlm.nih.gov/304...

[scryer99]

The one *proven* thing that works in managing CLL symptoms is exercise. It does not have to be crazy, fanatic routines - just get 30 minutes walking or light cardio in each day and that will have a beneficial effect.

There are a lot of natural remedies out there that are thought to be helpful. Green tea, antioxidants, turmeric, ginseng... but none of these have well-constructed medical studies proving any positive effects on CLL progression or CLL symptoms.

CLL's downstream effects tend toward fatigue (over half of patients struggle with this), joint and muscle pain, and pain from lymph and spleen swelling as the disease progresses. "Eat right, exercise" helps with all of that.

My oncologist did survey various vitamin levels and recommended B12 supplements. They do seem to help with the fatigue, but this is anecdotal.

CLL is a frustrating disease because the evidence clearly supports NOT treating until symptoms progress. The various side effects of treatment are clearly worse, on average, than just working through early stage progression. This is counterintuitive and frustrating, particularly when your symptoms start ramping up. But the numbers definitely support that approach.

Lose that five pounds you were meaning to lose, sleep well, and eat a balanced diet. Stuff we should all be doing anyway, now you have good motivation to actually do it. And it does help.

[Edalv in reply to scryer99]

Excellent advice, exercise regularly, eat a healthy and balanced diet… and keep a positive outlook in life…

[leftysfsl1945]

My Hematologist suggested that I read CLL information available from the National Comprehensive Cancer Network(NCCN) that includes St. Jude Children Research Hospital, Stanford Cancer Institute and 31 additional institutions in the U.S.

My Naturopathic Doctor (ND) recommended THE METABOLIC APPROACH TO CANCER by Dr. Nasha Winters.

By accident I found NATUROPATHIC ONCOLOGY: An Encyclopedic Guide for Patients & Physicians by Dr. Neil McKinney, ND

My Hematologist suggested a WATCH and WAIT "program" when I was losing weight and my WBC was 26.8 and my LDN was 431.

She wanted to wait (at least 3 months) after my WBC was over 30 before "an intervention".

My ND immediately prescribed (a successful) intervention recommended in NATUROPATHIC ONCOLOGY that has resulted no more weight loss and WBC and LDN dropping to 14.5 and 150 respectively.

Per the the NCCN guidelines, I am in Partial Remission (PR) headed towards Complete Remission (CR). WBC needs to be "low end of the normal zone" of 3.8 to 11.9 WBC for CR.

Figure out the best path for YOU.

Get a second opinion.

Following my ND's program costs me over $300 per month that is NOT covered by Medicare. I have not suffered through ANY negative side effects.

One of the Hematologist s drugs was $1500 per month and I do not know how much Medicare will pay. Chemotherapy was presented as an option.

Figure out the best path for YOU.

[Oxygenlover in reply to leftysfsl1945]

Hi. I live in the UK can you tell me what was the successful intervention you ND recommended you follow? I can then do some uk research thank you. I would really like to know.

[leftysfsl1945 in reply to Oxygenlover]

Minimize eating the Standard American Diet (SAD)

Include keto meals

When possible, buy organic produce

Minimize eating away from home

Limit sugar intake

Drink good quality water (reverse osmosis)

Exercise frequently.

While following a keto meal plan working out 45 to 75 minutes (at least 5 times per week- mostly stationary bike) my WBC dropped almost 20% in 4 weeks

Eat last meal at 6 pm and breakfast next day after 10 am

Take the following daily

1-NFH EGCG(Green Tea Extract)

1-CARLSON Gamma E-Gems(Gamma Tocopherol 465 mg) - REQUIRED to avoid liver problems

3-HOST DEFENSE Reishi Mushroom capsules

4-Vitamin D-3 15,000 iu per day

5-Vitamin K2

6-Quercetin

7-NAC

8-Cucurim 375 mg

9-Zinc

The above 9 items are PRIMARY AGENTS( my term) and not VITAMIN SUPPLEMENTS.

The 9 items are not SUPPLEMENTING a pharmeceutical intervention/solution.

Be flexible and choose the best intervention for YOU.

Benefit from NCCN info and Naturopathic Oncology info.

I hope to be in CR before June 2024

Refer to NATUROPATHIC ONCOLOGY by Dr. Neil McKinney

Good luck

[Oxygenlover]

Thank you so much for the information. I will pass this on and feel sure she will follow at least some of it. She is very much driven by what her UK doctor says.