Any thoughts?

[Fiddlegal]

I was diagnosed with cll in 2013. I am new to this site. My numbers continue to go up. Any thoughts on diet that might help? When should I start chemo or immunotherapy?

[Newdawn Administrator]

Hi Fiddelgal and a warm welcome to the site and your first post.

I'm not aware of any specific diet guaranteed to halt the progression of CLL but many people choose to eat healthily and reduce carb and sugar input. The important thing is preparing our bodies for the rigours of treatment and being in reasonable shape is always a bonus. Any exercise that you can safely undertake is beneficial.

Starting treatment is very much dependent on clinical need and these factors are the primary considerations for commencement of treatment;

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

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


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


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


4. 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.


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


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

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


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


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


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

I hope you're keeping well and that the levels don't progress too dramatically. Are you experiencing any symptoms presently that make you feel treatment discussions are warranted?

Regards,

Newdawn

[Fiddlegal in reply to Newdawn]

Thank you for all this info. I am trying to process it all and I will get some explanations from my doc!

[dougstalbans]

I don't have the expertise of the last reply but I do read the health press & weigh up the pros & cons, & have stayed on W&W while choosing to go from 10st borderline underweight to 12st borderline overweight in case I get ill / need treatment & need to have some spare weight to lose. I have read that crisps, chips etc are a real no-no & I have long avoided added sugar, alcohol etc & if you get the right balance as I try to do a veggie diet seems sensible to me. Others will have other views!

[Fiddlegal in reply to dougstalbans]

Thank you. Yes I totally agree about the sugar. It has been the most difficult for me. I also have added a bit of weight for the sme reason but I find it is mostly fat and not muscle. So that is the next thing to work on. Good luck to you.

[dougstalbans]

I omitted to mention but I buy organic beetroot juice sweetened with apple juice, as it has anti-cancer properties, plus Turmeric, only palatable in low doses

[Fiddlegal]

Interesting. I haven't tried any natural foods. I will check it out, thanks.

[Hoffy]

I do know someone who went on a low sugar vegan diet and brought their numbers down from 150,000 to 50,000 . The Person eventually went on treatment about five years later .

She is doing well on ibruvica plus Gazyva

There also is research out of mayo clinic on using green tea supplements in a careful manner . I have posted on the subject before .

Most importantly consult a CLL specialist before treatment. The treatments are changing and there are serious trade-offs with certain treatments. Study closely all long term side effects!

I am on a imbruvica plus Venetoclax targeted therapy clinical trial and doing well so far.

[Fiddlegal in reply to Hoffy]

Yes I definitely need to get off sugar! Thanks for the onfo and best of luck to you on your treatment. Keep me posted.

[Bixilon in reply to Hoffy]

Como te resuta la combinacion de Imbruvica con Venetoclax? Es tolerable? Yo empece hace 10 dias con Imbruvica solo y me causa bastante malestar? Gracias. Saludos

[Bixilon]

Soy de Argentina. Estuve 7 años desde el diagnostico sin tratamiento. Siempre tome te verde. Quizas sea bueno.Suerte!

[Hoffy]

If you take at night after dinner that seems to help with side effects. If you get fatigue the worst might be when you are sleeping.