Greetings: I am a 73yo male with a CLL diagnosis about 6 or 7 years ago. Currently my hematologist has me on a Wait & Watch routine and seeing me every 6 months. He has given me brief overview of how CLL progresses and the chemical treatments available, none of which I'm currently on as I have some ways to go yet. However, I wrote him and advised I wasn't thrilled with the chemical approach and was going to self-administer an EGCG (a green tea extract) routine in the interim.
I am now 60+ days in to the EGCG but now must wait until October before I see him again: which will be just prior to his retirement and an intro to a "new" caregiver (will be my 3rd in total).
I've only been on this forum for a short time. Many of the comments I've read have been encouraging, even those about the chemical treatments. My mind is open to advice and suggestions.
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NWcllfighter
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Hi, and welcome! Like you, I was very disenchanted with the chemical approach to treatment. I pursued alternatives quite actively. But I ultimately became extremely gravely ill from CLL. Extreme anemia and neutropenia, transfusion-dependent for 5 months. I started ibrutinib 10 months ago, in September 2017, and it sorted me out quite quickly (normalized my blood results), and with really no side effects. So do keep an open mind.
Hi, and welcome to the club! Also look at curcumin. There is in vitro evidence that alternation of these two can bring benefit. My CLL specialist recommended EGCG to me and I told him about the curcumin addition and approved. Also, is your hematologist a CLL specialist? If so, great. If not, you might want to consider switching to one or to at least getting a consult either in person or through the CLL Society (I think that's the place. Can someone confirm?) where you can get a videoconference with a leading specialist as a consult.
Yes, it is the CLLSociety.org. Thanks to this group I was made aware of the website and my next appointment will be with a CLL specialist from the list who, quite fortunately, is 2 miles from me.
Complementary treatments like EGCG and curcumin may be able to slow the progression of CLL, but despite being "natural" they are also "chemicals" and can have some significant negative health impacts if not carefully monitored.
And as PlanetaryKim says, you need to be ready to keep an open mind, and continue regular monitoring by a CLL expert so you do not pass the point where the modern NON chemo treatments will be effective.
I have never had Chemotherapy, but have been treated with 4 different targeted therapies that were effective with minimal, reversible side effects. The new drugs like Ibrutinib and Venetoclax may have less undesirable effects on the non cancer parts of your body than EGCG and curcumin -(which have been described as "natural Chemo").
There is a pinned post that I recommend for very thorough reading:
Thank you one and all for your responses to my "Introduction". I appreciate the comments and references provided and will be going through them. The apprehension toward "chemical" treatments (Ibrutinib and Venetoclax) has been lessened. I look forward to learning more as we journey together.
If you are retired you have the advantage of limiting exposure to people with contagious illnesses. I worked in a public setting during WW and contracted all usual maladies. Your immune system may gradually weaken so take care and consult your new doc on monitoring that situation. My oncologist prescribed IVIG to boost my immune system several years before I needed treatment. It was only during cold/flu season initially but then I began getting sick in the summer. I have been on year round IVIG both before and after treatment (FCR).
Am 8 years into retirement from full time work. I have blood work every 3-4 months + oncology review every 6 months for my primary care and hematology care providers. No course of action has been suggested by my hematology care provider (wait & watch). Thank you for your comment. Have learned so much since connecting.
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