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What to Do While You Watch and Wait: A Patient’s Perspective

This content was current as of the date it was released. In science and medicine, information is constantly changing and may become out-of-date as new data emerge.

By Mark Hoffman – Patient
Mark, a fellow CLL patient shares how he manages watch and wait and what works for him. His story is meant as an example and not a recommendation of any particular diet or supplements. Always check with your physician before changing your diet or starting on any supplements.

What to do while you watch and wait? Although it’s no fun having chronic lymphocytic leukemia (CLL), at least it is not an acute disease where you have to move very quickly.

Many times, treatment decisions can be put off for many years. Thirty-percent of people never have to have treatment. A good disease for procrastinators!!

I personally have had CLL for a year now and it’s been a busy year.

I have been working on the following: Education, Diet and Exercise, and Green Tea and Turmeric.

Education:

The most important thing to start with is educating yourself. The CLL Society is very helpful in that process.

Because there is no official cure for CLL, education is very important because without a clear cure, doctors have flexibility on what to prescribe.

We are in an exciting time and there are many new drugs that were not available five years ago. Many doctors have not been fully educated on the nuances of the new treatments and would rather do traditional chemotherapy. Also, you need genetic testing before receiving treatment, because if you’re 17P deleted, chemo is ineffective and harmful.

The other question is when to do treatment. From what I have seen in my support group, many people are treated way too early. CLL is not a very common cancer, so hematologists many times just want to do what is typically done for other leukemias – treat right away.

Diet and Exercise:

I am not a doctor or a dietitian but I have found and heard these things to be very helpful.

I started a gluten-free and mostly dairy-free diet a few months after I was diagnosed and have found it very helpful. Given that I have swollen lymph nodes in the stomach area, a gluten-free diet makes me feel a lot less bloated. I am not allergic to gluten, but I find my digestion works a lot better without it. I also lost some weight which is partly due to the gluten-free, but also maybe partly due to my CLL

A gluten-free diet sounds a lot harder than it is. All it really means is to cut out wheat from your diet. You can still have oats, rice, corn and other grains. Fortunately now there are many gluten-free breads and other substitute foods like gluten-free pasta. Oatmeal is gluten-free, Cheerios are gluten-free, corn tortillas, rice is gluten-free and many other things. You just need to avoid traditional bread and traditional pasta and traditional desserts like brownies and cake.

I say to people to try it a couple weeks and see how you feel. If you like it, great, if it doesn’t seem to help you, don’t do it. I cheat on the gluten-free diet and it still doesn’t seem to bother me, provided I don’t eat large amounts of bread and pasta.

There is a lot of research which says a low meat, high plant-based diet is beneficial from a cancer standpoint. Exercise and being as healthy as possible helps as well.

Green tea and Turmeric (Curcumin):

There is phase 2 clinical trial out of the Mayo clinic in Minnesota showing that large amounts of green tea can slow down CLL. You can link here to see the article.

In order to take the quantities of green tea required, you need to have special decaffeinated green tea pills. There are multiple brands available, some variations may contain small amounts of caffeine so read the label. Doing some research on the Internet will help to identify which is the best value. You will also want to know what the EGCG value is. I joined Consumerlab.com and their reports are objective and helpful.

In the clinical trial, the patients are taking 4000 mg of EGCG a day. This is equivalent to drinking about 40 cups of green tea a day.

If you decide to do this, you need to work with your doctor to make sure your liver enzymes are OK and not an issue, specifically ALT and AST. I have worked with my doctor and not had any issues.

I take 2000 mg of EGCG in the morning and then 2000 mg later into in the early afternoon. I have read you get the best absorbency if you take on an empty stomach, although it could upset your stomach and as a result it may not be recommended. The FDA made subjects take it with food in the study. Please discuss it with your doctor.

Note: you need an Integrated Health doctor since many doctors are very close minded to non-approved regimens, even though this was done in a Phase 2 clinical trial. I take the EGCG supplements, plus 3-5 cups of green tea per day.

Another paper out of the Mayo clinic in Minnesota is regarding Turmeric or Curcumin with green tea is synergistic but confusing. The research shows that they work together if they are taken sequentially 24 hours apart, but not together. Together they oppose each other.

The following is the paper is the link to the paper on this research: Curcumin Inhibits Pro-survival Pathways in CLL B-cells and has the Potential to Overcome Stromal Protection of CLL B-cells in Combination with EGCG

Note: this research is all done in vitro (meaning in a laboratory using CLL cells) and as a result it is not fully known how it works in the body.

I am personally taking high doses of green tea (EGCG) one day and high doses of Curcumin the next day and then repeat the sequence.

The rate of my white blood count increase has slowed down since I started this regimen. I do feel much better and have more energy since I started. I’ll need to take this for many more months to see how it actually works for me. I have high-risk cytogenetics (Trisomy12 and 17P deleted). In the Mayo study, most people get results in about 2 months, however, they were not in the high risk category.

Unlike green tea, curcumin is best to be taken with oily foods and maybe pepper for better absorption. There are special brands of Curcumin that have other ingredients to help with absorption. I also drink juices made from many fresh turmeric roots. It is very strong and I add oranges as well. The café where I buy the drink from has a special Juicer.

Be Well.


Mark is 52 yrs. and lives in San Diego with his wife and 3 children. He was diagnosed with CLL is December of 2015. He enjoys biking, back packing and other outdoor activities. If you are interested in the details of the products described in the article and where they can be found, please email us at support@CLLSociety.org and Mark will get back to you with a fact sheet.

Originally published in The CLL Tribune Q4 2016.