Living with CLL since 2004, no treatment, no information!

[julienpr]

Hello, I was diagnosed with CLL in 2004 and have been trying to control or eliminate it with a mostly vegan diet (I am now 65 years old). But as time has gone by I have been "losing the battle", I think due to my sugar addiction. My white blood cell count was 14,000 when it was discovered and confirmed, and is now in the 60 - 70,000 range. All other blood counts are "just barely" in the normal range, except my Lymphocytes which are at 95%. I have been living in Africa and the Middle East the entire time and am frustrated by the lack of availability of any alternative treatment expertise, preferably from a holistically educated "regular" MD. I have never noticed any effects at all due to my CLL and am very physically active windsurfing, open ocean kayak racing, mountain climbing, diving, et. I am planning on making an appointment with a Hematologist here in Dubai (where I am living for the next few years), who my general practitioner says gets good reviews from a couple other CLL patients she has referred to this Hemo. I want to discuss "options" with him. ANY SUGGESTIONS how I should approach him. (I really don't know anything about the treatment options but really want to steer clear of immune system destroying "regular chemo"). Any advice at all? I feel very helpless and alone, like I am marooned alone on an island where there is no pertinent information. I can find very little if anything on the internet about alternative treatments for CLL. There is tons of information on "hard tumor" cancers. Thanks for listening.

[AussieNeil Partner Administrator]

If your absolute blood counts are still in the normal range so long after diagnosis, you are doing extremely well. You can ignore any percentage results in your white blood results because they are badly impacted just by your lymphocyte count.

Blood count wise, treatment discussions don't start until your platelet and haemoglobin counts fall below 100 (might be 10 for haemoglobin - it depends on the scale). As a society, we do eat too much sugar, but cancer was around way before per capita sugar consumption rocketed up a century ago or so. The purported cancer/sugar link is an alternative medicine myth, not backed by credible evidence. Increased life expectancy is the main reason for the increase in many cancers, particularly CLL, where the median age of diagnosis is 72. How many people lived longer than that when sugar was a small part of our diet over 100 years ago?

I expect that by the time you need treatment, non chemo treatments will be the norm. Meanwhile, you will find discussions on evidence based effectiveness of high dose green tea elsewhere in this community, but taking it isn't without risk.

Neil

[julienpr in reply to AussieNeil]

Thanks for your comment Neil. I find it very enlightening and heartening.

[Keepkicking]

I recently went to see a Naturopath (which is a regulated profession in my province.)

Some of the CLL treatments he was recommending and willing to offer me were IV and oral DCA (dichloracetate) and IV curcumin.

I'm not at a point where I need treatment yet, but it's nice to know my options.

I have tried discussing herbals with my regular cancer team and they won't comment or recommend anything, which is frustrating.

[sandybeaches in reply to Keepkicking]

Hi Keepkicking, after reading your post, I read a few articles about DCA, and they did not mention CLL treatment. I highly recommend you do a thorough research of these suggested treatments in CLL patients, not solid tumor patients, and find out how it is supposed to work in the body.

Just to let you know, I have been going to see naturopaths for almost 35 yrs now, so can understand why you are attempting to find a more natural approach. However, just to remind you, even a " natural " medication has side effects and affects your organs and blood cells.

May you not need treatment for years to come.

Sandy Beaches - west coast BC, Canada

[AussieNeil Partner Administrator in reply to Keepkicking]

DCA has previously been discussed here: healthunlocked.com/cllsuppo...

and here: healthunlocked.com/cllsuppo...

Doesn't sound very promising as a solitary agent.

Curcumin has at least been studied enough to find that it contains chemicals that can trigger apoptosis in CLL cells. There are at least a couple of concerns though - no reputable studies of its effect in the body of those with CLL, plus the difficulty of getting a high enough blood serum level (typically overcome by adding black pepper/piperine, etc to an oral preparation) . IV curcumin would also overcome that challenge, but I'd suggest that you are putting yourself at unquantified risk taking it directly into your veins. Given that even with the latest drugs, no CLL specialist recommends starting before absolutely necessary, do you have sufficient symptoms to justify taking an unquantifiable risk? (Note that I've been taking high concentration green tea orally for over 8 years and for some of that time taking curcumin orally, but I was diagnosed at stage IV and was struggling health wise with severe fatigue. I've also done that with the full knowledge and support of my medical team.)

Neil

[tryandtry]

Your early progression of CLL sounds very much like mine (diagnosed in early 2003, WBC initially ~14,000, "watch & wait" for about 8 years, then WBC ~ 60,000+, Hgb <11, lymph > 90%). Yours probably held-off longer because of your diet;; I took conventional chemo (Rituxan), which worked wonderfully for me.

However, I'm now taking the pill(s) Imbruvica. Very expensive, but so far, so good. I'd suggest that you find the video from this Spring in these archives of the "JAMES" (department) at Ohio State - it discusses CLL future treatments, all conventional, but VERY high praise and test results for Imbruvica patients, especially those who have never had conventional chemo. Improvements on this pill are also under study - VERY promising. Not a holistic answer, but something to consider if you decide to try a more conventional approach.

Good luck!

Gary

[MsLockYourPosts Passed Volunteer]

Check cllsociety.org as well as following this site to get yourself updated on what is happening with treatments. There is a lot of exciting stuff newly approved or in trials in the US and other countries. I don't know how accessible they are currently where you are. The founder of the Society, Brian Koffman is both a general practice MD and a CLL patient. He is also a very strict Vegan. I know he would be the first to tell you that doing as much as you can with diet and exercise is a good approach, but that it won't stop your CLL. The web site not only has good information, but also has links to reliable, CLL specific resources, including this one. Brian also has a blog which he started several years ago about his journey with CLL. bkoffman.blogspot.com

The number that you want to follow is your absolute lymphocyte count, not the WBC or the lymph percent. If your report only gives percents multiply the WBC x the percent converted to a fraction (eg 70,000 x .95 using your numbers above). What's important is not the number itself, but whether it has doubled in 6 months or less. There are people with much higher (300 and above) counts who are still in watch and wait and doing well. The doubling would be one indication that starting a treatment discussion would be appropriate. You should chart the ALC over several blood draws to establish your pattern. Of course you need to monitor your HGB and your platelets as well.

There is an option on this site to track your labs. (Neil? I hope you see this - I don't use it because mine are on a patient portal). If Neil doesn't come up with the link I'll PM him, or you can.

You will find a lot of support on this site from people who understand the CLL journey. You might want to restrict future posts to community only (bottom of the page when you write a post) for your own privacy and because you are more likely to get personal responses (all replies to a post have the same privacy setting as the original post and some things people just don't want searchable on Google. Hang in there!

[julienpr in reply to MsLockYourPosts]

Thanks a million Pkenn!