After being diagnosed in Jan 2013 went through immediate FCR which lasted eight months. This led to a three year remission after which the disease was again detected. Disease progression has been gradual but my Oncologist says further treatment with Retuxin/Bendamustine is very likely soon (he has been saying this for some six months but disease progression has been very slow)
What does this secondary treatment hold for me and is there likelihood of another remission or are these secondary treatments playing for time. I am a healthy 71 year old still playing active golf and feel absolutely fine. I live in South Africa where many of the modern drugs are not available or beyond the financial reach of most.
Plett1234
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plett1234
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It has been on my mind to consult with a Haematologist ( I suspect my Oncologist does this anyway). It might be the way to go...logistics for getting to one are not good but would be worth it I feel. Thank you for your input.
Hello Plett1234, BR is a valid treatment and certainly not playing for time. I have recently been weighing up BR against FCR and eventually decided on FCR, the treatment you had initially as my first line of treatment.
You appear to not have had a period of watch and wait before starting on FCR after diagnosis. So is there a policy in South Africa to treat CLL immediately I wonder?
But from what you say, at the moment you are active and feel absolutely fine, do you have information about your blood test results or has your consultant explained exactly why they feel you require further treatment soon?
I would hope (and certainly hope for myself) that after undergoing FCR you might get a longer remission than 3 years.
I only joined yesterday and I'm still trying to navigate my way around. I think I'm getting there!
I couldn't help noticing you mentioned that you were having (had?) FCR. I had that in 2005 and I've been in remission ever since - 12 years - so try not to worry and don't even let thoughts about relapsing enter your head. Optimism and positivity are the most powerful weapons that you have by your side. Truly x
Thank you so much Darkbagpuss, 12 years remission! Wow, that is wonderful. Yes, I have received cycle 1 of FCR and cycle 2 is due next week. But my neutrophils are playing up and it looks as if there will be a delay. Luckily, I'm usually a fairly resilient and optimistic person but, while undergoing the treatment, there are certainly a few down days to contend with. But I will definitely keep in mind your 12 years and long may they continue ...!
Holly, I had exactly the same problem myself with my neutrophils not recovering quickly enough after the first cycle. They gave me injections of Granocyte (Lenograstin) which is a drug that stimulates neutrophil production. It's a tiny little needle that they inject into the skin on your stomach. They told me that I could inject myself if I wanted to, but I was too much of a wimp. Pulled a face and asked em to get the district nurse to do it!
What about all those pills eh!? First & only time I ever got a prescription in a carrier bag! 🤗
Hello Hidden, I am a wimp too and don't like the idea of the self injections! I have said I don't want them yet, give my body a chance to respond but I will probably lose in the end and have them at some point.
I absolutely hate all those pills and dread having to start cycle 2 again this week, or next, depending on bloods. By day 4 last time I was ready to give the lot up and take my chances, but when it was finished and I realised all my swollen lymph nodes had reduced/gone, I was ecstatic and realised it was all needed!
Incidentally Hidden, I am not sure why I called you Darkbagpuss in the note above! Getting a bit muddled with someone else, sorry about that! Must be chemo brain striking again! Holly.
Thank you for your input. When first diagnosed Oncologist said disease was so far advanced I needed immediate FCR even though in hindsight I had none of the symptoms often seen on this website. At that time I knew nothing of the disease and accepted all I was told. In four years I have had three scans an five bone marrow biopsies...excessive??
Last blood test in Jan showed Haemoglobin 11.8,White cell count 16,8,Lymphocites 14,7,Platelets 103
With thanks
Hi plett.
I had FCR in 2005 and stumbled across an article a couple of years afterwards concerning a study that the Mayo clinic in the US had carried out regarding green tea, and how it killed off CLL cells in people who drank it. I started drinking it thereafter and I've been in remission now for 12 years. I sometimes take it hot, but usually I buy fruit flavours and make iced tea with it. I drink on average about 1/2 a litre a day.
Might be worth a try for you. Theres certainly nothing to lose. There's plenty of articles on it if you Google 'Mayo Clinic CLL green tea'.
Welcome to our community Darkbagpuss. As you'd expect, there's plenty of community discussion on green tea: healthunlocked.com/search/g...
Not everyone saw a benefit in the Mayo Clinic phase 1 and 2 trials and the response increased with the dosage, which was 4 grams of a pharmaceutical grade polyphenon-E and which is no longer available. Finding high concentration green tea supplements with known good quality may be a challenge too.
'a pharmaceutical grade polyphenon-E' - whatever the hell that is!?
I don't understand it. What is it with western medicine that everything has to come out of a blister pack from GlaxoSmithKline or Astra Zeneca?
Why does the 'active ingredient' have to be extracted and turned into a pill? And how do they know that the so called active ingredient is working alone, that their isn't some kind of catalysis going on inside the body when you drink a cup of tea - because really that's all you need to do - drink a cup of tea. You don't need pills or extracts. Just grab a tea bag and put the kettle on. Maybe there's something to it, and maybe their isn't, but in either case, what have you got to lose?
I've been in full remission now for twelve years, drinking green tea for ten of those and there's no trace of the disease in my body - I dunno, maybe I'm just lucky, but whatever the case, it's certainly done me no harm.
As far as the availability of high strength green tea supplements are concerned! I wouldn't know anything about that. I usually just grab a box of tea bags from Tesco once I start to run low 😉
Your long term survival gives members of our community hope, particularly when they live where non-chemo treatments aren't available and FCR is their best available option.
Active ingredients from natural substances are extracted and turned into pills so those taking the pill can be sure they are getting enough of the active ingredient to be effective, while reducing the risks associated with taking a higher dose than is needed to be effective. (It 's a well recognised problem with herbal remedies that the active ingredient dose varies considerably, depending on many factors that are nigh impossible to control.) As to how well the active ingredient works and whether it needs other factors to be effective, that's what clinical trials can establish. Many natural substances show activity against cancer cells in a test tube, but fail to show much effect when taken. That can be due to a number of causes, such as poor absorption, our body neutralising the active ingredient too rapidly, inability to get a sufficient high enough concentration into the cancer cells, the cancer cells engaging defences internally or by controlling its environment, which is known as stromal cell protection, and recognised as a problem with CLL.
Clinical trials have most likely identified the reason why you have survived 12 years without a remission after your FCR treatment, and I'd say that there is good evidence that it has nothing to do with you drinking green tea. I expect your CLL is IGVH mutated, so you fall in the 12 to 24% of FCR patients expected to enjoy long term survival if they survive more than 6 years: healthunlocked.com/cllsuppo...
Drinking green tea is no doubt healthy for you, but again, the Mayo clinical trials, which were funded by members and carers of people with CLL who followed Chaya Venkat's CLL Topics/CLL Updates, showed that activity of the active ingredient in green tea, EGCG, was dose related. You'd need to be drinking at least 20 cups of green tea a day to get anywhere near a high enough concentration of EGCG in your blood to slow your CLL progression.
I offered the guy a bit of advice - something that I do that's part of my routine, something that I believe in and something that keeps me going. It's simple, cheap and if it doesn't work then no harm is done.
So why would you try and debunk that? Why would you attempt to try and discourage the guy from just trying it? And why the hell would you attempt to debunk it for me when for all you know it's the one thing in my life that I believe in and allows me to think that there may be some long term future for me after all and I don't have to live my life on a month to month basis, constantly living under the shadow of CLL because I daren't think too far ahead?
You're very well informed. I get it. I'm impressed, but if people aren't going to be allowed to offer advice to others on here without somebody coming along and trying to shoot them down, then what the hell is the point. I'd be better off on Facebook.
Thanks very much. You probably won't have to worry as I doubt the guy is gonna try it now anyway.
The volunteers supporting this community take pride in providing evidence based information to assist those with CLL so they can make informed choices. From the information I provided above, you now know that you are highly likely to be cured of your CLL and 'don't have to live (your) life on a month to month basis, constantly living under the shadow of CLL' - and that won't likely change if you stop drinking green tea.
Given you had FCR 12 years ago, I expect you are one of the ~67 long term survivors referenced in Figure 2 of the paper I mentioned. Isn't hard evidence preferable to a belief you are passing on without back-up evidence?
Perhaps the ~40% of mutated IGHV CLL patients that didn't survive more than 6 years after their FCR treatment could have improved their changes of survival with green tea, but again, available evidence strongly indicates that taking enough to ensure at least 4 grams of the active ingredient, EGCG per day would be needed. More likely those that didn't survive more than 6 years had their CLL progress due to the effect of other chromosomal damage, likely with some of it induced by FCR, but we won't know without further studies.
Neil
in reply to
Hey Jonny-this a a place of peace and a kind of sanctuary from the stress of our disease. It's a take what you like and leave the rest. Please chill.
My husband has had CLL for over 14 years. When we 1st heard about green tea I bought him the capsules, he hates tea. He took the green tea for 5 years and it did nothing.
Have been taking Green tea capsules for over 6 months now - have not seen any difference in my six weekly blood tests - perhaps they're not a high enough concentration!
As one who has just come back from Clinic having relapsed from RB then FC light over 3 years ago and expecting to start Ibrutinib on Wed aged 74 my advice is find an experienced CLL haematologist before you repeat FCR. things have moved on
After a very long FCR remission I tried Ibrutinib. With disastrous results: extreme diarrhea, fever spikes to 105F, etc. Then tried BR with excellent results. Counts down to normal range have continued with every sixty day Rituxin following infusion. Strongly encourage you to be optimistic about BR.
I'm 73, physically active, feel great, same as you. Very best wishes for you and yours!
my advice, had br in 2013, remission less than 2 years, your counts do not indicate treatment now. getting br after fcr. fcr is a lot stronger than br. so it should have been the other way around. I am on Ibrutinib and its been so good for me so far. Try get non chemo treatment. Just my advice, im not an expert.
How can you know, your Cll is coming back after three years past fcr? What are the blood counts like? How many cll cells were detected? Did you get MRD- after last cyvle of FCR?
After fcr three years ago I started drinking green tea fron china and korea (real leafes) indtead of earl grey black tea. Don't know yet, whethet iz influences my remission. Still ok unmuteted and cd38 -, trisomie 12 . Will see how long it works.
I guess, cll is very much diffetent in every bidy.
Sorry my tea is original from korea and china. Bio 120 Euro each 100 gramm
If you believe in all rubbish from greanpaece, you must still learn more. They want your money for unprooven stories. Stay on coffee if you like, very healthy, as everybody knows. 20 years ago I also read greenpeace nonsens.
Right, good idea. But next time, try to use real tea rathet than tea bags, you will taste the difference soon. The remaining part of the manufacture together with dust and dirt willl be put in small bags and sold. But at least you get some flavour. Like beef soup in bags with 0,2% beef inside! P
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