My name is Drajan and I am sorry to be dragged into your club but here I am.
I am a 49 yo from Ottawa, Canada that was just diagnosed with CLL stage 0. I had None-Hodgkin's Lymphoma 7 years ago and had 8 months of chemo. It was all good until now.
However, I am not posting to complain or blame faith for what happen. I am writing because I am upset. Upset by the prevailing defeatist attitude displayed by most people here. I was outraged when in today's day and age a doctor in the capital of Canada can tell me: "Well, there is nothing you can do now. We'll just have to wait and see. If it gets worse, we'll just do chemo." And then what? How many people has he cured? Zero!
I can not believe that anyone can take this answer and not be offended by the arrogance of the current medical establishment. I can not believe that a doctor can be so incapacitated to think beyond the textbooks that "big pharma" had provided throughout his/her studies, that they are completely in oblivion to other methods of approaching a disease. After reading up almost half of the internet in the past twenty odd days, I found a lot of useful, misleading and conflicting information on alternative CLL treatments. I am now convinced that my CLL, if not caused, it was helped by my previous chemo, my six mercury-filled silver fillings I have been caring for almost 40 years, and a number of other factors that have weekend my immune system.
So, I would like to tell you my new friends: I will be trying low-crab diets, taking green tea/tarragon supplements, trying high dosage vitamin C, zapping with zappers and anything else that I can find that makes sense to me and has helped others.
What I WILL NOT DO, is WAIT and WATCH (to die)!
I promise to let you know if I come across something that might make difference and maybe help you too.
Cheers
Drajan K.
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In march 2009 I had kidney stones. The ex-ray revealed a swollen lymph in my abdominal. I had a 12 cm enlarged lymph full. My doctor at the General Hospital, Dr. Zanke, could not believe I had that. It had not spread anywhere in the body though. He put me on a 8 month CHOP with something else, I forgot now. I responded so well, that we had to cut it down to 6 months only. The lymph went down and no trace of bad active cells. By the end of 2009 I was clear and in full remission. What is your CLL stage? How long have you had it?
I was diagnosed in 1998... so 19 years...had treatment in B.C. with fludarabine and rituxan in Dec 2011, then a Richter's transformation and 6 rounds of RCHOP...
In 2015 my absolute lymphocyte count [ALC] was 50K and I was offered Imbruvica (ibrutinib) through Janssen, prior to funding ....Unfortunately that was stopped after 3 months due to bleeding issues and A.fib... colon cancer and a shredded urethra... 😝
So I have been floating without treatment for about a year, In November, Ontario funded idelalisib and rituxan, IR, ... I started that mid December... so far so good... my absolute lymphocyte count [ALC] dropped from the mid 300K to 128K in two weeks... decent.
Great fighting spirit Drajan! Always worth trying the diet and supplement options, I am too and will keep all posted. This is a club no one would voluntarily choose but the membership are wonderful. Supportive, informative and empathetic. Welcome. As to medics, yes many of us have experienced poor and negative service, but also wise, supportive and constructive professionals. I too was upset when diagnosed Feb next year but on the road of discovery found this association a tremendous boon. Keep the fighting spirit!
Sorry to hear you are joining a club you didn't sign up for. Regarding your comment about not watching and waiting to die, and that you are going to try the various therapies mentioned, so have a lot of people on this forum. They are not watching and waiting to die, nor do they have a defeatist attitude, but are getting their bodies in shape by exercising, loosing weight, and eating a more healthy diet. Some are taking green tea extracts and tumeric. ( make sure you liver enzymes are tested on a regular basis with green tea extract ). Do you really think that most people would want to go through chemotherapy or the other medications recommended and deal with all the side effects, as you personally know, instead of taking something simple as green tea extract?
Most of us are put on watch and wait, as starting chemotherapy early in the disease may change our genetics of the disease to a more aggressive type, which may not respond to treatment very well. At this time CLL is still considered an incurable cancer, but CLL researchers are very hopeful that in the not too distant future newer drugs and combinations of drugs still being tested could provide a cure.
Your non-hodgkins lymphoma may have been in watch and wait for years if diagnosed at an earlier stage.
I can understand your angst regarding the watch and wait, and believe me, we have all gone through it. But you have to understand that CLL is usually a slow growing cancer. You may wish to read about how CLL is staged, and compare it to your own test results. There are some incredibly knowledgeable people on this forum that can assist you with any questions, or point you to articles that will help you understand CLL more.
You have come to the right place, having like most of us been dragged mentally kicking and screaming into the world of CLL.
Yup very many of us are doing all we can to stay as healthy as we can despite all fate tosses to us.
Just had my 6th cll cancerversary, so far surviving ovarian cancer and a few other problems on the way.
I think you will find this a good place to be, so much knowledge here, many positive people, empathetic and helpful ones too, because we all understand what it is to be diagnosed and told to watch and wait.
Research carefully which green tea tablets to take. Oh' we watch and wait until we need treatment no plans on dying 😆.
Welcome to the club no-one wants to belong to - but where we receive support and information on all possible responses to being told we have CLL and all ways of responding to that bombshell - from working on improving our general health and thereby our resistance, to dealing with treatment options both old and new, as well as current research and developments in treatment alternatives. Current findings are that around 30% of us never do need treatment and for others that there is an expanding range of treatment alternatives, some of which do not involve chemo - and that there are more being actively researched now.
If you have the opportunity, it might well help to see an accredited 'CLL specialist' (there are lists available via this site) who is up on the current situation in CLL knowledge and can evaluate your situation in the light of it.
Drajan - you make a mistake when you accuse the people here of defeatism. What you have here are survivors - some treated, some not. We are not blindly waiting for our doctors orders. We try things and share results. You would do well to pay attention to the contributors.
Sorry to hear of your recent diagnosis. It might be useful to point out that many folks walk around with "dormant cancer cells" that don't cause trouble. Hence the "wait and see". In my case the NHL, although detected, didn't need treatment for about three months. Believe it or not, sometimes it will go into remission of its own accord ie. your own immune system takes over the fight. In the meantime, enjoy the green tea and anything else that will improve your life style.
Welcome Drajan (you'd do well to restrict your posts to the community if you're using your real name).
I read your post and in honesty wasn't sure whether it made me feel energised or irritated. Please don't confuse an exploration of traditional treatments by this community as a sheep-like herd response characterised by apathy and blind obedience! All the supplementary treatments and foods you suggest have been discussed on here and many members use them. I chuckled at your typo because a low-crab diet doesn't appeal and the tarragon is a new one on me. Do you perhaps mean turmeric? There's a fair bit of evidence regarding the properties of curcumin. As Bub says, be careful how you source your green tea and also be aware that you'll need to monitor your platelet function should you imbibe large amounts of green tea;
I'd just urge caution in believing that all things that sound natural or holistic are benign. Some very healthy sounding foods can have adverse effects so moderation in all things and be careful of supplements that may impact on disease activity or blood levels. I'm afraid I have no idea what the 'zappers' are you intend using but perhaps that was just a bit of humour. However, if you find an effective CLL zapper, please send me one without haste!
The thing is Drajan, you don't actually have to Watch and Wait. We could all push for treatment at a very early stage regardless of being asymtomatic or having an indolent presentation but evidence suggests that early intervention does not increase overall survival rate. That's the reason we watch and wait. It's scientific evidence not complacency. It's certainly not a defeatist attitude at all. There isn't a single person on here who isn't putting up a magnificent fight and we welcome you to join us in our battle. We are looking for every new type of 'armoury' and skilled people to help us win this fight and it doesn't just stop at chemo (even though that can be spectacularly successful for some!). Snake oil sellers and purveyors of barmy, unproven methods may not apply!
Newdawn writes a lot of sense - as always. The reality is that CLL is currently incurable, though that may not last. It is also the case that when the disease progresses beyond a certain point, it needs to be treated.
So, is that a cause for despair and tearing your hair out?
I'd say - definitely not. I had treatment only 6 months after diagnosis - yes, the dreaded chemo - and was lucky to come out with a complete remission which has lasted 5 years to date. In that period, I have lived life to the full, and have thoroughly enjoyed myself. Indeed, I have rarely been happier, though the reasons for that aren't related to the CLL!
It is of course very nerve-racking to W&W, and in a way I'm glad that I hardly had to sit through it - but I don't think lining the pockets of snake-oil salesmen will do much good, except perhaps to the morale. Taking exercise, getting fit, losing a little weight - these actions would improve general health and also improve the body's ability to fight illnesses and survive treatments - in my opinion, anyway.
It actually made me feel a little irritated. i was diagnosed with CLL at the age of 55, a year and a half ago and am on Watch and Wait (no change is ALC). I always exercised and watched what I ate so I can't change anything there. I don't believe any food or drink out there is going to be a miracle cure. Im just going to keep doing what I've been doing. I have a brother-in-law that is going through esophageal cancer and a friend that just had surgery before Christmas to remove part of her lung (lung cancer). They would trade with me in a heartbeat. My doctor said there is nothing they can do for me (right now) . So I will wait. I can take Watch and Wait any day😄😄😄!
efun.....so true! The day my husband was diagnosed, after sitting in the cancer clinic for the first time ever, hearing the words CLL for the first time ever, one of the first things he said to me was "at least I don't have to head down the Chemo Hall".
Good luck with your alternative remedies, I wish you well in your journey. I respect your views but think you should also respect the feelings of everyone on this forum. My husband is a fighter and will continue to be...defeatist is not in our vocab!
The fact is medical research has found that early treatment isn't the way forward with this type of cancer.
I want to apologise to the people that got offended by my comments in my original post. I know that a lot of people here are working hard to help others and have sacrificed a lot more than just time. I know that not everyone here is just waiting and watching...
I was outraged at the fact that it is officially acceptable in the modern medicine to tell a patient that they have an incurable, eventually deadly, disease and in the same breath announce that all that they should do is "wait and watch".
Who is the "professional" that came up with the protocol and thought that this is an acceptable way to deal with a newly diagnosed CLL patients?
If you know that your methods are more than ineffective, compile/offer/suggest a list of possible and/or most plausible alternative ways for a patient to explore. But of course there are the rules, regulations, restrictions etc. etc. etc.
Instead a patient gets: If we cant help you, nothing will.
Didn't all doctors take the Hippocratic Oath? It looks like the oath is only valid if you can save your patient with approved and patented drugs.
The Hippocratic Oath begins 'First do no harm'. If a doctor does not know what will best help at that time then they cannot professionally recommend a specific treatment. CLL specialists with greater knowledge may choose to suggest - suggest only - various possibilities that some CLLers are finding helpful that the patient may choose to try, these may include supplements, lifestyle amendments, etc.
When it is known that early aggressive treatment may prevent the best longer term results then the professional response is to wait and monitor the situation - it is in the patient's best interests to 'watch and wait'. When treatment becomes necessary the best option can be selected at that time in the light of current medical knowledge and research findings then - and there are improving treatments always in the pipeline.
Drajan, I suspect I may be wasting my time here but as a fellow CLL'er, I feel obliged to try.
Is your frustration perhaps aimed at the lack of preventative treatments currently available? I don't think you'd have any arguments from here that we all wish there was a way to halt, stall, prevent the rising levels and declining immune function. Where we probably start to disagree is in your accusation that this is driven by some kind of medical apathy and cynical enslavement to big Pharma which may even be driven by financial inducement. As a 'survivor', do you keep yourself fully informed of the immense scientific and medical research into blood cancer and CLL in particular? It's heavily on the radar and compared to certain other cancers, is receiving a huge amount of interest. The CLLSA for example are working tirelessly on our behalf trying to push the science, politics and support networks. In the 4.5 years since my diagnosis, there have been huge advancements in the treatment armoury and much greater public awareness. There is still a long way to go but I don't have a sense of apathy, inertia or abandonment.
I feel particularly confused by your suggestion that doctors insist on only using 'approved and patented drugs'. What would you have them use to experiment on us? Maybe you are frustrated at the unwillingness of some medics to 'think outside of the box' and consider alternative or supplementary methods.
I can't help but feel that some kind of personal experience of medical services has left you with deep disenchantment. Were you perhaps treated straight away last time and now find yourself baffled and upset by the watching and waiting this time round?
I sincerely hope that you can find what you're looking for and perhaps some safe, supplementary methods that make you feel you're doing something pro-active. Watch and wait shouldn't be an exercise in resentment and bitterness that's for sure.
Further to London_Girl , G1llHa1n and Newdawn 's excellent responses, in short, because CLL is a chronic illness and any treatment comes with risks compared to watch and wait, early treatment just subjects the patient to risks earlier than necessary because there is no cure (yet). Those risks occur both during treatment and can last well beyond treatment, from increased risk of illness and death from infections both during and after treatment (treatment typically leaves us with an even further compromised immune system), to side effects - again temporary or permanent. Treatments incorporating chemotherapy put us at a higher risk of secondary cancers and earlier progression - typically with a more aggressive and harder to treat form of CLL due to clonal evolution. We also run the risk of becoming refractory to treatments - they no longer work when the CLL develops resistance to them. Hence the sensible medical decision to hold off initiating treatment, which is constantly being challenged by hopefully better treatments being trialled.
As others have said, there is much you can do during watch and wait to improve your quality of life with CLL, but even these come with risks. You can injure yourself by exercising more, for example. However, when you look at a large enough group of patients to look at whether the reward exceeds the risk on average, exercise nearly always comes out as a low risk, high reward option for many, many health conditions. There is plenty of discussion elsewhere on what has been proven to be worthwhile for at least some of us while we are enjoying (or enduring - your choice) watch and wait.
I hope you will restrict your post to community only (click on the v at the bottom of your original post). In my opinion you need a new doctor - one who explains the ins and outs of CLL better. Chris can guide you as far as specialists in your area. W&W is the accepted approach if treatment is not seen as being indicated or between treatments for CLL, which is currently not curable. It has been, and continues to be, the right approach for most of us here.
Unfortunately, welcome. I feel exactly the way you do! I was diagnosed, stage 0 in 2011 ending RN school. My current wbc is 32k and I have very little of an immune system left.
I am frustrated because as you to feel, why wait? I want to continue my life NOW, functioning as I can today!.
As an RN trying RSO is not an option at this time, but perhaps it can do u some good.
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