I am a 73 year old male diagnosed in 2020 with CLL. Oncologist at the time stated that I would die with the CLL rather than from it. Early this year I noticed a swollen lymph node on the side of my neck. WBC went from 19 in 2020 to 55 this year. Also DR found that my spleen is enlarged. Last time I talked with an Oncologist (different one this time) she is still in the wait and see mode. Next appointment is in 5 months.
While I am taking several supplements I have found some conflicting information on EGCG and Turmeric. that states that Turmeric will negate any effects of the EGCG if taken at the same time. So I have been doing one in the morning and the other at night. Any thoughts?
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73wcll
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Hello 73. I agree with your oncologist insofar as his opinion that these days many people with Cll will die with it, not from it.
Cll is very heterogeneous and for some folks, it is a lot more challenging than for others. You have not given much info about your Cll other than that your wbc went from 19 to 55 over what sounds like a three year period of time. That’s indicative of relatively slow growing Cll.
The most important prognosticators for Cll are FISH status and IGHV mutation status. Those with mutated IGHV and 13q deleted Cll have a more favorable prognosis. Unmutated IGHV Cll with 17p deletion tends to be more aggressive. And there is all sorts of in between. Many of us have a mix of good and bad markers.
A lot of people with Cll take turmeric and or ECGC. I don’t see any harm in it. None of the several Cll specialists I have seen think these supplements make much of a difference. My doctor at Md Anderson told me that if I like green tea, then by all means I should drink it, but don’t expect it will alter the course of my Cll in any meaningful way.
I think most all Cll specialists encourage us to exercise and eat a healthy diet. That’s true for everyone with just any illness.
Some of us will never need treatment. Most of us will see our wbc increase and nodes grow over time. We are fortunate to have many treatment options.
The best advice you might get in here is to see a Cll specialist. A true Cll specialist is not just a doctor who sees a lot of Cll patients in their practice, but rather a doctor who sees almost exclusively Cll patients and is involved in clinical trials and studies relating to Cll.
Some Cll specialists are oncologists. Most true Cll specialists, though, have a background in hematology. Many oncologists have a general cancer practice making it impossible to keep up with all the changes in different cancer treatments. A hematologist who sees mostly Cll patients is more likely to be up to date with treatment changes.
The treatment landscape changes so rapidly in Cll that if you took a Cll course in med school three years ago and have not kept up, you might be way behind what’s happening today.
Almost 14 years ago, I did exactly what you are doing now and found the same papers. That was two CLL treatment revolutions ago!! First breakthrough was a treatment that could cure about 55% of those with the IGHV marker - FCR. Problem was that FCR wasn't recommended if you were over the age of 65. Also, as you'll appreciate, with 70 the median age of diagnosis, when you add about 5 year before typically needing your first treatment if you actually ever do - about a third of us don't, that limited FCR's applicability.
Cancer treatments are colloquially separated into 'cut, poison or burn' approaches, sometimes two or more of surgery, chemo or radiotherapy are used. For us, you can't cut out leukaemia, radiotherapy is of limited use for large interfering nodes, potentially including the spleen, which leaves chemo - where you use chemicals that interfered with the DNA division so that the daughter cancer cells can't function. Problem was that these older chemo treatments also targeted other fast growing body cells - you got mouth sores, your hair fell out, etc (incidentally CLL chemo treatments are milder than that used for other cancers, so that you might just get some hair thinning).
In the last 5 to 10 years, we've seen incredible breakthroughs in targeted therapies; they are still called chemo, but they work to selectively inhibit CLL cells from staying alive, so apoptosis pathways kick in. Unlike other cancers cells, CLL cells do undergo apoptosis, they just divide at a greater rate than they die. Targeted therapies inhibit the CLL cell stay alive signalling, so hopefully all the CLL cells die. In our community, we tend to call these targeted therapies "non-chemo" treatments. Some are now third generation iterations, so that they are very selective for CLL and some B cells, with few weaker off target effects on a other few body cells, so that the side effect profile is milder.
Now some brief background on EGCG and Turmeric. You've done your homework, because I also settled on these. I haven't seen better evidence for any other supplements.
Interest in EGCG resulted in $75,000 phase 1 and 2 studies by Mayo Clinic, funded by members of CLL Topics/Updates. A pharmaceutical grade product polyphenon-E supplied by Mitsui Norin was used, but this company switched from oral to topical use of EGCG and had a preparation for genital warts FDA approved. So we have no long term data on EGCG use. What's more, one of the lead CLL specialists and authors of the EGCG studies, Dr Neil Kay, specifically warned CLL patients not to use EGCG supplements, "because we don't know what's in them". That's because the US (and much of the world) doesn't require supplements go through anywhere near the approval process that's required for FDA approved treatments. There are significant problems with supplement suppliers not being truthful about the content of what they sell. I don't think much has changed since these investigations, sadly:
Assuming you have a reliable supplier, basically all that they need to use as evidence of the product's potential benefit, is some animal study or if you are lucky studies on human cancer cells. If you are very lucky (as is the case with EGCG and turmeric), there are even studies on human CLL cells and amazingly actual human (in vivo) studies!!
Per the turmeric example, there are write ups of how CLL cells die when exposed to turmeric on a slide - in vitro. You came across the study that found that CLL cells weren't that much effected if exposed to both EGCG and curcumin; you needed to sequentially expose them. I took them about 12 hours apart. In vivo evidence is a much harder hurdle, because you need to get enough of the active ingredient absorbed into the blood and not dealt with by your liver or have protective 'nurse' cells keep the CLL cell alive. Unfortunately curcumin absorption is poor; you need to mix it with pepper or something fatty,, then sadly the liver makes short work of it. Nevertheless, there was an Australian study done to test how well a curcumin formulation worked on CLL patients. Sadly, not only were the study results rather disappointing, I've learned a great deal about study design since my diagnosis and there's a flaw in this study design which can 'identify' an effect when there probably isn't one. See: healthunlocked.com/cllsuppo...
While I consider EGCG held promise (Mayo patented it in use for synergistic effect with proven CLL drugs), again you have the problem of getting a high enough blood serum concentration to have an effect. You've probably read the Mayo study papers; transaminitis - liver poisoning was an issue and trial participants didn't like the digestive side effects. I experienced them too. More importantly, I also found that if I took more than 2 grams per day, my liver suffered - see attached. Supplement purity can be a serious issue, because you need to take a whopping 4 grams per day of EGCG if you want to match the Mayo Clinic trial conditions as best as you can without the pharmaceutical grade extract. Not only can taking enough green tea powder to get four grams of EGCG per day make you nauseous, but if there's a problem with fungal contamination. heavy metals, (radioactivity from Japanese green tea was an understandable concern a while back), pesticide or other contamination, that's not good considering you are taking a much higher dose of green tea powder than the manufacturers advise.
Sorry to be so negative, but with the much lower level of side effects from targeted therapies along with the way higher response rates nowadays, the time for EGCG has gone in my opinion. Improving your fitness and eating a healthier diet pays far better dividends.
Neil
Concentrated green tea capsule - high EGCG content, impact on my liver ALT function test.
Neil, I have no doubt you are correct - but some things will never be proven one way or the other. Certainly the Mayo EGCG study, as a proper robust scientific study (treatment and control groups, enough power etc) would struggle to get a pass mark as a school boy project. I did the EGCG thing as well but only by way of drinking about 5 or 6 cups of sencha green tea per day. On diagnosis, my white cells went rapidly from 20 something to mid 40s. After about a year they dropped to very low 30s and stayed there for 20 years. Just co-incidence, I am sure, but I still drink the green tea just in case 😀. When people tell me I am nuts, I tell them when they have been on W&W for 22 years without drinking green tea, I will happily take their advice. Besides, I have actually grown to like the taste of it😀😀.
LOL Paula, I used to drink green gunpower leaf tea, but without any hope it would influence my CLL, as I didn't drink large amounts per day. Just liked the taste. Went near on 20 years without treatment but pure coincidence in my case I'm sure. ( I've switched now to Chai ) 😊😊
I had a similar experience, I didn’t do well with ECGC suplentes, they upset my digestive system. I prefer to take green tea in tea form, which I do religiously every day, several cups a day…
I started drinking decaf green tea five years ago to slow my CLL. I still drink decaf green tea instead of coffee and actually prefer the taste to coffee. The doctors told Chris-CLLcanada that it would require 26 cups of green tea a day to meet Mayo Clinic dosage. Two or three is about my limit.
Those with mutated IGHV and 13q deleted Cll have a more favorable prognosis.
I have the 2 muted genes carrying high risk mutations being the ATM and DLEU allele variants and I always get the words with poor prognosis in the reports my haematologist sends to my doctor. Is having the 13q more favourable. Or is it because I have the 2 ? I’m a bit confused by the cajunjeff words, thanks
Your level of testing is more extensive than that returned by typical FISH testing. Also, please appreciate that the different markers have varying influence on the time to treatment and what treatment is best for you.
With an ATM mutation, you are unlikely to do well on older "chemo" treatments. Information on which of the targeted therapies would best suit you is still being gathered. I'm certainly not across the particulars. Are you satisfied with the level of expertise from your consultant? If not, now is the time to ensure you have that in place.
I was diagnosed with CLL at age 73 in November 2020. My white cell count was 30 m, but my nodes and spleen were significantly enlarged (abdominal node was the size of an orange). My oncologist started me on a 12 month regimen of Obinutuzumab (6 months) and Venclexta (12 months) beginning March 1, 2021. On March 1, 2022, I was in total remission. Hope this gives you a little insight as to what you can expect....
your best bet is to have CLL prognostic studies as certain markers correlate with rapid progression
FISH studies, IVHG mutation status to name a few.
Also, doubling ALC of <3-6 months is a poor prognostic factor
An enlarged spleen more than 6 cm below rib margin is a sign of needing treatment. The larger it gets, the more easily it can rupture with minor trauma and if it does, it is possible to cause fatal amounts of blood loss.
I’d recommend seeing a CLL specialist soon and ask for all the prognostic tests and measure your spleen.
I recently summarized a medical report showing that the majority of general oncologists don’t do the testing which leads to inappropriate treatments etc.
Check out the CLL Society web site for summaries of the most up to date information on this and every imaginable topic.
Odds are your doctor is correct on life with CLL. On the EGCG green tea extract, Mayo Clinic did a study in early 2000s using laboratory grade of EGCG no longer available with the results that the study was shut down due to patient liver damage. Unfortunately, EGCG is now being sold as a weight loss supplement and putting a few people in hospital for overuse causing liver damage. I have taken Turmeric without any benefit to my CLL, but if you feel it helps by all means continue. Blessings.
Since I haven't given much information on test results, I might as well give them now.
Biopsy indicated about 30% involvement. Del(13q)/-13 was detected. Besides several enlarged lymph nodes from my neck down, my spleen is about 20 cm all shown by CT scan. Neck lynph node is 2.4 cm in short axis. MCV is 82.3, RDW is 15, Platelet count is 146, Whit cell count is 40.19, MCH 27.8, Neutrophil% is 19, Lymphocyte% is 69, Monocyte% is 2.0.
I am still new to the investigation and am will to learn as much as possible from a layman's perspective. Right now my main short term concern is the neck node and the enlarged spleen. Longer term would be the prognosis for progression of the cll.
Some brief orientation comments on your results, which are out out of the ordinary:-
1. 30% infiltration isn't of concern, given about 25% is common for early diagnosis. Infiltration can be into the 90%+ stage when treatment is needed.
2. Did you mean 13qdel14, not 13? as that's the most common deletion and the most favourable - better than the other checked for FISH test findings.
3. Enlarged nodes and perhaps spleen are where CLL cells prefer to accumulate, along with the blood and bone marrow. Treatment trigger is when a node is longer than 10cm/4 inches, or if they are in danger of interfering with your organs. The spleen needs to jut 6cm below the ribs or be growing or causing symptoms. I had a swollen spleen at diagnosis and managed 11 years on watch and wait and I have a "normal" karyotype on FISH, so not as good as yours.
4. Your platelet count is only just below the lower reference limit. The trigger for commencing treatment used to be 100 but the iWCLL allows for lower, stable counts. Mine where in the 50s when I started treatment.
5. Lymphocyte doubling time under 6 months is a trigger for treatment, provided there are other concerning signs. Your count of 69% of 40.29 or 27.7 is moderate, but we have members in watch and wait with counts upwards of 600. Tip. Only use percentages to calculate absolute counts. Never use them for monitoring changes in your CLL.
Thanks for the response Neil: I really like this site as it gives information not available elsewhere. The people here are encouraging and have a lot of information for someone like me who is new to investigating this disease.
The numbers I quoted were from the different tests, hence the percentages were included as they were documented in the test results. I do realize that many of the results were just outside of the reference range. When I saw my oncologist a month ago she was a little concerned about the spleen as it appeared to be around 8 cm below my rib cage. She asked if I had been loosing weight (NO) or had any feelings of being full before a meal was finished (again no).
As far as your second question on the deletion I quoted straight from the Fish analysis. Here is the rest:
XY[20]: Normal male karyotype
FISH analysis (FSG20-87764)
Del(6q): Not Detected
Del(11q)(ATM) Not Detected
Trisomy 12: Not Detected
Del(13q)-13: DETECTED
t(11;14): Not Detected
Del(17p)(TP53): Not Detected
Question: On -13 instead of the 14, do you know the difference?
I asked if there was a typo because per: ncbi.nlm.nih.gov/pmc/articl... 13q14 Deletion and Its Effect on Prognosis of Chronic Lymphocytic Leukemia
As detected by FISH, the most common chromosomal abnormality associated with CLL is the deletion of 13q14, constituting approximately 50% of all cases. It generally has a good prognosis but some forms have led to unfavorable outcomes.
Thanks! I just sent a message to my Oncologist asking if there might have been a typo in the report. I also asked if there was any way to find the size of the deletion as that seems to be of concern especially if the size is >70%. I can't find any references to the 13q13 deletion associated with cll.
This site has been very helpful in my understanding of this disease.
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