Newbie 39 years old

[Apricot77]

Hi! Just got the news I have CLL.no symptoms. Anyone under 40 here that could share some info on how they are coping and any natural treatments they are taking to help such as green tea etc. Thanks!!

[Jamie_james]

Hi Apricot77

I was diagnosed at 47 last year but I suspect that I had it from around the age of 35 as I had all sorts of odd symptoms that no one could explain and which would then disappear.

My main advice would be keep up a strict regime regarding hand washing and avoiding folks with colds etc.

My initial symptoms at diagnosis were enlarged nodes and severe mouth ulcers(canker sores) 6 months later I caught a cold and I haven't been right since then! It really was a wake up call.

Regarding natural treatments- I have experienced a huge improvement in my counts ( all of them) and also a huge reduction in my nodes since I started taking 300 mg of garlic tablets per day.

This could be coincidence of course (as symptoms do wax and wane) and I will know more when I have my next lot of bloodwork done in mid November.

In the meantime- don't panic, live your life!

All the best

Jamie

[thompsonellen]

I took green tea extract for 2 days and ended up with a spectacular rash on my face. Just be careful. I don't think there is much proof it really worked anyway. A friend of mine is a homeopath and had all sorts of ideas but I'm in a clinical trial and I didn't want to complicate things by throwing in an alternative medicine regimin. I did ramp up my intake of veggies and exercise regularly, and I think these both help and are good ideas for anyone with or without CLL.

[KellyM]

Hi Apricot 77! Sorry you have found yourself here but glad you found this site. There is a wealth of knowledge and experience in this group and from my experience, everyone is very helpful and caring. I am 39; diagnosed in November 2015 at age 38. I have no symptoms other than a slightly swollen lymph node on the back of my neck and my lymphocyte count is just slightly elevated. My advice to you is to find a CLL specialist near you. Even if you only have to see them once a year; it will be beneficial for you to have that specialist if/when you ever need treatment. I see a hematologist/oncologist locally and I see Dr. Byrd at OSU as my CLL specialist. Best wishes to you!

Kelly

[budman549-USA]

Here are some links that might help you re "alternative" treatments:

lef.org (Life Extension Foundation) - search their data base. Their staff oncologist reccomended CoQ10, reishi mushroom extract, curcumin, vitamin D3, ECGC, lots of water to flush toxins, low glycemic diet (cancer loves glucose!)

mercola.com - search their data base. You can sign up for daily emails

thetruthaboutcancer.com/ (this .com is all about natural cures. Starting this weekend they are doing a free two day live streaming seminar of various "experts". I think this link will take you there - go.thetruthaboutcancer.com/.... Dr Mercola from the above link is one of the presenters

[AussieNeil Administrator in reply to budman549-USA]

As I replied just a few days ago in this forum about Joseph Mercola; you need to have some appreciation of the reliability (or otherwise) of websites before you take any action based on their content. That goes for the truth about cancer site too, so I'm glad you said 'various "experts"'.

'Joseph Michael Mercola (born 1954) is an alternative medicine proponent, osteopathic physician, and web entrepreneur, who markets a variety of controversial dietary supplements and medical devices through his website, Mercola.com.

:

Mercola has been criticized by business, regulatory, medical, and scientific communities. A 2006 BusinessWeek editorial stated his marketing practices relied on "slick promotion, clever use of information, and scare tactics."'

en.wikipedia.org/wiki/Josep...

'The medical community says Mercola is dangerous, and that he steers patients away from proven medical treatments in favor of unproven therapies and supplements.

“The information he’s putting out to the public is extremely misleading and potentially very dangerous,” says Dr. Stephen Barrett, who runs the medical watchdog site Quackwatch.org. “He exaggerates the risks and potential dangers of legitimate science-based medical care, and he promotes a lot of unsubstantiated ideas and sells [certain] products with claims that are misleading.”

Mercola has been the subject of a number of Food and Drug Administration warning letters about his activities, including marketing products as providing “exceptional countermeasures” against cancer, heart disease, diabetes, and a host of other illnesses.':

alternet.org/personal-healt...

'Mercola.com is a horrible chimera of tabloid journalism, late-night infomercials, and amateur pre-scientific medicine, and is the primary web presence of Joseph Mercola.':

sciencebasedmedicine.org/9-...

Clinical trials are the only way you can reliable determine what works and what doesn't. thompsonellen , you may be surprised to know that there were Mayo Clinic conducted phase 1 and phase II clinical trials that showed a pharmaceutical grade extract of EGCG from green tea reduced lymph node size and lymphocyte counts in the majority of patients on the trials. Side effects - mainly digestion related, were an issue for some patients, but patients needed to stay on the green tea extract for months to see any effect. Sorry to hear you ended up with that spectacular rash.

Neil

[Apricot77 in reply to AussieNeil]

The cancer industry is a 300 billion dollar industry per year.If there were a natural cure for cancer it would be hidden from the public and concidered dangerous or the doctors quacks. Any cure from nature can not be patented so no cash for the industry.Makes me so sad. If I find a cure for CLL, I will shout it from the rooftops! 😊

[AussieNeil Administrator in reply to Apricot77]

And the largely unregulated nutrition and supplements industry is about a third of that, at over US$100 billion three years ago!: globenewswire.com/news-rele...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

Tait Shanafelt and Neil Kay from Mayo Clinic, an internationally recognised centre of excellence for CLL research and patient care, filed a patent for a green tea and drug combination for the treatment of a hematologic cancer, with CLL and ALL specifically mentioned. The patent was accepted in September 2014 by the US Patent Office: freepatentsonline.com/y2014...

There are many natural substances of interest in CLL research. This paper looks at the most promising of them: ncbi.nlm.nih.gov/pubmed/213...

Most of our drugs come from nature, but with supplements, even if the supplement provided is what's stated on the label, the amount of active ingredient can't be easily controlled due to natural variation. At least with clinically proven drugs, the safe level of exposure is determined via Phase I trials, and Phase II and III gather more information on efficacy and side effects, etc.

We need to recognise that there's a continuum from supplement through to prescribed drugs and there are dangers from taking anything - from unwanted side effects (which could be what another patient wants!), through to death from a number of causes - including interactions: theconversation.com/complem...

Neil

[Cllcanada Top Poster CURE Hero in reply to Apricot77]

Many natural substances have been researched in CLL and continue to be researched.

This paper discusses some, but to date they have all been wanting...as a primary treatment..

hematologyandoncology.net/f...

~chris

[TheFrog]

Apricot77, first of all my name is Jacques (French father but born and raised in West Yorkshire). Like you I was 39 when diagnosed the only symptoms were swollen nodes in my neck and night sweats. A CT scan and bone marrow biopsy showed large nodes north and south of my diaphragm plus invasion of my bone marrow so I was actually stage 4 B. Back in 1993 they didn't do any genetic testing but I believe they should do a FISH test on you because if it turns out you have a 17p deletion then Fludarabine (the F in FCR) will not be effective.

I was on watch and wait for only 6 months before I needed treatment but if you have no symptoms it's unlikely that this will happen to you.

In my case I had 6 cycles of fludarabine which had very few side effects and was really easy to cope with, however there was a theory at the time that if you hit the disease really hard you might get a cure so as soon as I finished the fludarabine and I was in remission I had a stem cell harvest, high intensity chemo (really grim) and then received my stem cells back to restore my immune system. That treatment kept me in remission until 2007 when I started feeling a bit rough but no obvious nodes. A CT scan showed most nodes were slightly enlarged but a biopsy revealed my bone marrow was stuffed and as a result my red count was very low (7.5 I'm normally about 15) and my neutrophils were very low so I was wide open to infection and to cap it off my platelet counts were low so nicking myself when shaving resulted in a lot of bleeding.

This time around I had 6 cycles of FC because Rituximab (the R in FCR) still wasn't approved by the NHS. Apart from two 1 week stays in hospital due to infections I got through that reasonably well although cyclophosphamide did make me sick despite the anti emetics.

I've now been in remission for over 8 years and feel fine, this week I've swum twice and played squash 3 times so not too bad for a 61 year old.

SLL is a bit more difficult to know how you are doing compared with CLL because your blood counts can stay normal for long periods and without CT scan (which you don't want too often because of the X ray dose) there's no way of telling what's happening to your abdominal nodes. The plus side is you don't fret over white counts every time you have a blood test.

As far as I'm concerned the only natural treatments I use are 4 brazil nuts per day at they're high in selenium which is good for your immune system (don't overdose because they become toxic) and exercise (squash and swimming) which is increasingly being listed as the best free treatment you can get.

Drop me a mail anytime you have any questions.

[Kenn123]

I was diagnosed with CLL five years ago at the age of 42. I've been on w and w for all that time and kept very well. Never had a day off work but have just started treatment now due to fatigue and bulky nodes in neck. (Not a good look!)

My advice would be to a) find a CLL specialist b) to have fish test done and c) to educate yourself as much as possible.

Then try to forget about it. It could be years before you need treatment and there are some amazing ones available now.

Try not to worry. I choose not to tell people as then it was easier to forget about it.

[Apricot77]

Thanks everyone for all the replys! CCL is a incurable disease but I truly think it is curable from within. Makes me feel better. Hope it does for you too! 😊

[serendipity1]

I am new here and was interested in this message due to natural remedies and treatments.

My partner aged 38, hasn't been given all information. serve anemia , 3 bags later, 17 blood tests and a bone marrow , anemia level was 52, he is only 83 since transfusion and should be 138 I think, so might need another transfusion? we were told blood disorder then CLL, so Wednesday he gets it all confirmed we think. We aren't two weeks in yet, so still wrapping our head around it all.

However, (going off topic then) we, or should I say, myself, have been looking into food, herbs etc due to the effects of treatment he will have, the impact on other organs etc (been through cancer, chemo with family and seen the impact it has on organs etc) At the moment we are just trying purple grapes, natural Greek yogurt, garlic, lemon and brazil nuts. Each working on a different organ. We need to wait until we know what is what really.

I am a great believer in natural foods etc to help in the aid, protect other organs, energy levels and to help with fatigue, along with a little exercise, walking with deep breathing techniques to push more oxygen into the body. Won't know any impact until we are further down the line, but would be interesting to read other people's impact from benefits etc.

P.s Have been reading Steve Freier, diagnosed in 1999, did the chemo etc at first, then went onto raw etc, as of 2015 he's been healthy etc.

[AussieNeil Administrator in reply to serendipity1]

You may be interested to know that medical science hasn't been able to determine whether it is best to avoid high levels of antioxidants, particularly in the form of supplements, during treatment. Basically, there are two schools of thought:

1) Antioxidants may help repair the DNA damage to the cancer cells caused by the chemotherapy, thereby reducing the effectiveness of treatment

2) Antioxidants may protect healthy cells, while encouraging cancer cells to grow and thus making them more susceptible to the cancer drugs

cancer.org/treatment/surviv...

and similar from other reputable sites.

It is certainly advisable to eat a range of foods to ensure adequate nutrition, when nausea and possibly neutropenia makes eating challenging, but beyond that, I'm not aware of any definitive proof for cancers in general, let alone chronic cancers, in particular CLL....

Neil