CLL Support Association
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Trying everything Natural to stay healthy in my Wait and Watch journey.

I have been to every site on treating Cll naturally. I work full time and my part time job is spending time researching everything to stay healthy during Wait and Watch. I am near treatment per my Oncologist seeing him every month. My ALC is 51.4 , RBC is 3.88 and Platelets 127. A few months ago my ALC was 63.5, RBC 3.39 and platelets 89.  My immunoglobulins are A  27 should be 81-463, G  552 should be 694-1618 and my M 19 should be 48-271. My spleen slightly enlarged.  I am going to see a Licensed Certified Nutritionist this month.  She will be testing me for Allergies and putting me on Vitamins and Minerals etc. and other protocols.  She believes in jumping on a Trampoline and I have started that and I noticed my counts came down. I will do everything possible to stay healthy.  I have asked God to help me find a cure naturally . Just wondering if I am the only one who has been obsessed with finding a natural cure?

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Hello, my husband is also taking a lot of supplements to try and control his CLL. But you must be doing something right because you had a very significant improvement in your blood values ! Well done !. May I ask what you are taking? My husband is an academic physician with a lot of research experience. We did a lot of research and this is what he is taking : egcg, vit D, curcumin, B12,B6, gossypol extract, neem, black cumin seed oil, vit C, Reicki mushroom extract, modified pectin, iron, folic.

I would be interested to know how you managed to improve your blood results so significantly.

Thank you,

Ileana Kahan

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I try to have home made soup ever day, vegetable, fruits and organic meat.  I am not having any dairy or oil because I am allergic.  I really started noticing a difference when I started jumping on a trampoline. I am going to start seeing a Licensed Nutritionist this month.  When I start on her program I will see if there is any difference in my counts.  The Nutritionist has been helping two people with CLL. I will keep  you  posted. I hope your husbands counts will be coming down. I pray that one day someone on this site will become cured naturally.   I hate to see all these people in treatment having so many side effects.

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Hi! I am thinking of buying an indoor rebounder because it is "supposed to be good for the lymph system". I tried to find some scientific studies backing this up, but found nothing. Okay, exercise is never a bad idea, regardless of the form it takes. I would like to know more about your experiences with the trampoline.

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I've read of the rebounder theory, but not in connection with CLL. Unlike the blood circulatory system, the lymph system doesn't have a pump. It relies on muscle action to squeeze the lymphatic fluid through the lymph vessels. So any vigorous all body exercise should work much the same way in increasing lymphatic fluid circulation.

Vigorous exercise can also temporarily boost the neutrophil count, which should give a slight improvement in immunity, in particular protection of infections from cuts, sores. The exercise results in the release of stored neutrophils in the spleen and some that are clinging to blood vessel walls, but then they need to be recharged, which might result in a dip if your bone marrow is struggling to make enough...

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Dear Neil,

Thanks for your input on this. I really like your posts—have you been a teacher or something? You have a talent for explaining these medical things in a way that people can understand. I am a university researcher in biophysics and I still think all this CLL stuff is confusing. It's a whole new world for me.

I agree that the neutrophils need a little help from exercise to push them out into the bloodstream.

I may or may not get a rebounder. I'm still thinking about it. My grandson will like it for sure, but I doubt it can have any effect on my CLL. I just wouldn't want to make it worse though.

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If getting a rebounder encourages you to exercise more, I think that may help your CLL more than the specific rebounding activity. Perhaps we should do some studies?

Thanks for your complement about my posts. I haven't been a teacher, but perhaps writing reports for senior managers for many, many years has helped. One of my immediate managers was great at developing his staff and had a saying - SMASC your reports, i.e. write them so Senior Managers and Small Children can understand them... :) . My career has also been in several fast growing technological areas, so I've spent a lifetime learning.

Biophysics should provide you with a good grounding to understand CLL research and medical reports, but don't be surprised if it takes a few years to become comfortable with reading the literature. Every field has its own specific acronyms and terminology that takes a while to understand. When you can read through a paragraph without checking what is meant in the context of the paper, it makes it much easier to actually understand what is being conveyed!

Neil

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I would love for them to find a cure of any kind.  But there sure is nothing wrong with eating healthy and excercise.   I thought about all the natural stuff but if ai make to many changes at once and my counts go higher I might not know what caused that.   Great to hear your doing well.   I am also continuing cardio workouts and have no issues with being tired.

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I think it is a great idea to make the body as healthy as possible while on w&w. I did diets and vitamins for many years at first hoping that my CLL can be cured. Of course it cannot be cured, but because I became basically healthier and stronger, when eventually the trials of infections and chemotherapy came, my body could cope better. Now I am in my late seventies having to face many difficulties as a result of treatments. I hate to think how much worse it would be if I didn't have this basic health and strength!

Good luck to you!

Sue_w

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Thank you Sue. 

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It has been muted previously that exercise may help to affect the ALC.

However, a word of caution from a non medical view.

Be careful as to what vitamins etc you take as supplements. 

For example taking cod liver oil can cause problems with blood cells.

Also please do inform your medical team of any supplements or vitamins you are taking. This is particularly important before any treatment regime as these treatments can react with vitamins or natural remedies or supplements in an adverse way.

Yes keeping fit is important and will help but caution with other things.

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Can you elaborate on problems with cod liver oil? I have been taking it for several years, thinking I was doing the right thing!

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I suspect Geoff/Cammie's concern is with the potential impact of omega-3 which is present in fish oils like cod liver oil.  If you have a low platelet count (a common occurrence with CLL), you can increase your bruising and bleeding risk if your diet is rich in omega-3.

Neil

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Yes Neil

Absolutely right I stopped taking it when in treatment after 20 years and due to the continuing low counts (112) have not restarted. As I also take Riveroxiban a blood thinner so the dangers are double in my case.

I mentioned this because it illustrates the potential danger of taking any supplements when having cll.

Always discuss what you are taking with your med team.

Geoff

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Thanks, Neil and Geoff.  It's a bit of a minefield, isn't it! I have always told the Drs what I take.  My platelets aren't bad, however, and are actually going up over the last two years. (From 91 in 2014 to 114 this year). I think I'll continue taking the tablets for the time being, but bear it in mind if there are any changes in blood results.

Chris in Wales

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Chris, you need to understand that with platelets, the quantity available for clotting (indicated by your platelet count) is only one part of the equation. The clotting process is very involved and supplements and diet can influence the effectiveness of the process. So it is quite possible to have an adequate platelet count and still exhibit bleeding issues.  That said, if you aren't bruising easily, you are probably fine with the amount of cod liver oil you are taking.  Adequate clotting is very important. as with poor clotting, it is quite possible to have an internal bleed and not be aware of it, with dangerous consequences.

Neil

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So much I don't understand! Thank you Neil for putting it into layman's language. I do seem to bruise easily (though no trouble with bleeding), so maybe I will stop! It is so difficult to walk the tightrope of what helps and what doesn't. 

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My husband was diagnosed with CLL in December 2015.  He's had regular episodes of fatigue especially after meals.  But after he started Vit. B6/B12 those have miraculously disappeared and his energy has returned to almost normal.  He takes curcumin, green tea extract, D3, krill oil, B6/B12 (methylcobalamin type, not just any OTC B12).  Thanks for your posts, they are so encouraging.  

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Dear Helenolton,

 I have read about jumping on a trampoline as being a beneficial tool for CLL!  I read that it gets the "lymph" moving.   You can also get a "lymph" massage by a skilled therapist which moves the lymph out as well.  I haven't done this yet as I was not sure about either of these methods.  However if your counts came down that is evidence that moving the "bad stuff" up and out has helped.  Exercise gets everything moving too and people who exercise seem to do better with CLL.  I guess because the cancer cells have such short lives it gives the body a chance to flush it out.  Ask your nutritionist about probiotics because they have really helped me and are inexpensive.  Do you have any lower GI issues?  If you do, probiotics may help.  Check with your doctor.  I have also tried to find natural things during watch and wait.  Please keep us informed on how your doing.  Good for you for taking good care of yourself.

Kathy

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Thank you Kathy.  I will keep you posted.

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Kathy 

Be very careful with lymph massage!

Just remember this may just move any cells hiding in the glands into the bloodstream and could cause further proliferation.

Once again please discuss with your med team!

Geoff

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Hi Geoff,

I agree with you which is why I haven't done it.  This is outside what my doc talks about but massage therapist do say this helps.  I guess the question is does it move the lymph out of the body via the blood stream?  Does this help or hurt your lymph system?  Does this cause proliferation.  I guess that is the $24,000 dollar question.  I appreciate your your comment and I won't do massage of this type unless I know it is safe.

Thanks,

Kathy

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helenolton wrote: I am near treatment per my Oncologist seeing him every month. My ALC is 51.4 , RBC is 3.88 and Platelets 127. 

Hi Helen,

Can you explain why your Oncologist believes you need treatment soon?   Especially since your ALC should NOT be used as a reason for treatment.  Your RBC and platelets are lower than desired, but as long as they are steady or improving that should not be a reason to treat. 

As we often suggest, you should see a   CLL specialist before starting treatment, or an experienced Hem/Onc that follows the iWCLL 2008 guidelines.   I suggest you follow this link and print them out for your own use and to provide a copy to your Oncologist, since he may not be familiar with them. 

bloodjournal.org/content/11... 

Here is their criteria for first treatment:

Active disease should be clearly documented for protocol therapy. At least one of the following criteria should be met:

Evidence of progressive marrow failure as manifested by the development of, or worsening of, anemia and/or thrombocytopenia

Massive (ie, at least 6 cm below the left costal margin) or progressive or symptomatic splenomegaly

Massive nodes (ie, at least 10 cm in longest diameter) or progressive or symptomatic lymphadenopathy

Progressive lymphocytosis with an increase of more than 50% over a 2-month period or lymphocyte doubling time (LDT) of less than 6 months. LDT can be obtained by linear regression extrapolation of absolute lymphocyte counts obtained at intervals of 2 weeks over an observation period of 2 to 3 months. In patients with initial blood lymphocyte counts of less than 30 × 109/L (30 000/μL), LDT should not be used as a single parameter to define a treatment indication. In addition, factors contributing to lymphocytosis or lymphadenopathy other than CLL (eg, infections) should be excluded.

Autoimmune anemia and/or thrombocytopenia that is poorly responsive to corticosteroids or other standard therapy (see section 10.2).

Constitutional symptoms, defined as any one or more of the following disease-related symptoms or signs:

Unintentional weight loss of 10% or more within the previous 6 months;

significant fatigue (ie, ECOG PS 2 or worse; inability to work or perform usual activities);

fevers higher than 100.5°F or 38.0°C for 2 or more weeks without other evidence of infection; or

night sweats for more than 1 month without evidence of infection.

Hypogammaglobulinemia or monoclonal or oligoclonal paraproteinemia does not by itself constitute a basis for initiating therapy. However, it is recommended to assess the change of these protein abnormalities if patients are treated.

Patients with CLL may present with a markedly elevated leukocyte count; however, the symptoms associated with leukocyte aggregates that develop in patients with acute leukemia rarely occur in patients with CLL. Therefore, the absolute lymphocyte count should not be used as the sole indicator for treatment.

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Thank you for all that valuable information.

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I second Len's concerns. Usually I pick up submissions where I wonder whether a member is perhaps being urged into treatment too soon, but I missed that in your post above.  I see you've 'Liked' my reply to Kelly about trying to work out whether treatment is likely soon and indeed my comments to her largely also apply to you.

Do ask your Oncologist what he considers will be your triggers for starting treatment and compare them with what Len provided from the internationally accepted the iWCLL 2008 guidelines above.  If what he says doesn't align with the guidelines, seek a second opinion promptly!

Neil

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Thanks Neil

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