Changes I made since diagnosis

[Carrot_Top]

I switched to a plant-based, sugarless, vegan diet and my numbers did improve after a year. I also added green tea extract supplements. I am now on many immune boosting supplements after seeing an integrative MD.

[AussieNeil Partner Administrator]

Thanks for sharing what you've changed diet and supplement wise since your diagnosis. In my first few years with CLL, I also paid particular attention to my lymphocyte count, but have since appreciated that we can easily become distracted by this just because it is easy to monitor. Unfortunately CLL may be doing much more internally that we can't easily monitor unless we have regular CT scans and bone marrow biopsies. Depending on where our particular version of CLL/SLL sequesters CLL cells, we can have as little as zero percent of our CLL cells in our blood with the SLL presentation. If we have a swollen spleen, infiltrated bone marrow, perhaps a swollen liver and multiple enlarged nodes, our blood CLL tumour load may be only a few percent of our total tumour load.

Like me, you have very little CLL in your blood. In just over 3 months, with no change in diet, supplements, etc, I saw my ALC change from 5.1, to 12.2 and back to 4.7, so I'd say normal variation is counting for as much or more of the change you are seeing as any change in your diet, supplements or anything else you are doing to manage your CLL. We've also learnt from finding how Ibrutinib and similar drugs that a rise in ALC can be due to nodes shrinking from the drug preventing CLL cells from adhering in nodes!

A healthy lymphocyte count falls in the approximate range of 1.5 to 3.0 and about 85% of those are T lymphocytes. T lymphocytes also vary up and down and ALC laboratory reproducibility is about +/-0.5.

Three days ago, you mentioned that your 'ALC started at 8.5 in Sept 2013 and got down to 4.6 in Oct 2014, which is still over but the % lymphocyte count shows normal in Oct 2014. ALC is back up to 8 as of Feb 2016.'

So all we can really say is your true February ALC at the time it was measured (it varies during the day) is somewhere between 7 and 9. (If it was truly 8.5 and we tested the same blood sample multiple times, we'd get a range of results from 8 to 9. Likewise if it was truly 7.5, we'd get a range of results from 7 to 8.) If we assume your ALC was 3 without CLL and 85% of those were T Lymphocytes (i.e. 2.5 of the 3) and the amount of T cells didn't change with your CLL, then your B-lymphocyte count, only some of which are CLL cells, would still only be (8 - 2.5) or 5.5. CLL specialists don't even bother measuring your lymphocyte doubling time until your ALC is over 30. We have members still in watch and wait with ALCs well over 200.

As I said just 3 days ago in another reply: 'Be very cautious about taking immunity boosters. An investigation into why my immunity was failing led to my CLL diagnosis, so I was very keen to find what I could take to boost my immunity. My specialist advised that no supplements would help me and I've since found that to be excellent advice. Where I've found good evidence of how immune boosters work, it has been by boosting lymphocyte production - and we don't need any more of those! There may be supplements that can boost other components of your immunity without boosting your CLL, but I have yet to find reputable research that clearly identifies anything that does this...'

Personally, I wouldn't try anything to boost your immunity unless:

1) You are having more frequent illnesses and/or you are taking longer to get over illnesses

2) You know you have neutropenia

3) You know how the immunity supplements work and can be sure they boost other components of your immune system but not your B-lymphocytes. If so, please share what you've found that is claimed to work along with reputable supporting research evidence.

With CLL, our immunity is also compromised because over time, less and less healthy B-lymphocytes mature into plasma cells which are our antibody/immunoglobulin factories. Unfortunately, the only way that this can be countered without treatment is by IVIG transfusions.

From what you've shared, I would expect your CLL consultant to state your CLL was stable, which is great news. Hopefully you also have feedback from your consultant that your spleen and nodes have also remained stable. You may well have a long W&W with CLL and never need treatment.

I commend you for your efforts to control your CLL, but I hope that after reading my long reply, you appreciate that you may well be wasting your money. The huge problem with chronic conditions like CLL is that it is very easy to be convinced that something works through a random alignment of trends. We really need carefully controlled studies with a statistically significant number of trial subjects to separate out any genuine effect from random variations. Some of what you are doing may well benefit you - perhaps in improving your overall health and thereby helping your body slow the CLL progression, but you'll need to look at the full picture - trends in blood counts (primarily platelets, red blood cells and neutrophils as well as the ALC), nodes, spleen, liver, bone marrow, infection frequency and duration, etc to be sure of any real effect. I'm not saying alternative/complementary treatments can't provide benefits. I suspect I've been able to slow my CLL progression by taking large doses of green tea and perhaps turmeric. My spleen enlargement hasn't changed noticeably in 7 years my nodes seem to be stable, but my neutrophils, platelets and immunoglobulins are worsening.

Neil

[Polfin in reply to AussieNeil]

Interesting, Neil. Thank you. I saw my haemotologist yesterday. After 13 years of W&W it seems likely that treatment will be necessary in the near future. I specifically asked her if there was anything I could do to delay that necessity. She said there was not and went so far as to recommend that I stop taking the mulivitamins and zinc gluconate supplements that I have taken for years, as they can affect 'readings'! She did approve of a glass of tonic water of an evening for controlling night cramps however, for which I am grateful as I have found it works.

Best wishes to you all

Polly

[JoanneIO in reply to AussieNeil]

Neil,

Thank you so much for sharing your knowledge with us. Really appreciate the time you devote to this forum.

I have so many friends/family over & over again recommending immune boosters. I always thought it was a bad idea for us.

Thanks for confirming my hunch.

But it does seem we are all an N=1 experiment. So kudos to Carrot_top for trying to improve their situation.

Jo

[LoganS in reply to AussieNeil]

Thanks Neil, I will diffenently be looking at my ALC by next blood test as I try to learn as much as possible about my disease.

[sun_flower]

Ha Ha really 😁

[Foggymind]

This topic reminds me of a similar one raised several years ago on another CLL forum. I have resurrected the basic content of that topic here.

Whilst undergoing the first of my Rituximab infusions several years ago there was a woman who like me had been diagnosed two years previously and this was her first infusion as well. She had followed a Vegan and a strict plant based diet for the last year prior to treatment. She was also taking immunity supplements of some kind although I don’t recall the names of them. She became ill during the third cycle of chemo but it was nothing to do with the chemo itself. She suffered very low energy levels, her skin condition was very bad and she lost her periods.

At first the specialists thought it was the chemo treatment because of the fatigue but a more detailed medical investigation indicated a gross vitamin and protein deficiency plus a large imbalance of her hormones all because of her diet. When "Normal" eating was resumed her health picked up again within a few weeks. I couldn't say what she actually ate or how strict she was with her diet but obviously it demonstrates there are those who may cause themselves more harm than good with both dieting and taking supplements as in her case. Further tests after she went back to a non-vegan diet showed a completely back to normal set of results with regards to vitamins, protein, and hormones. Most of what I have stated here the woman told us whilst we all underwent our treatment but it was reinforced by her haematologist coming to one of the sessions and warning us all of being careful of what we choose to eat and to try and ensure the food we do eat contains all the essentials a body needs.

Kevin – Essex, UK

[Cathy777 in reply to Foggymind]

Hi there. Just had my first ever two infusions of rituximab. How are you doing as you must now be seeing results. I am very interested in experiences of others. Its two weeks in and I am very impatient for results! I was told that whilst rituximab is used for some cancer treatments its not a chemotherapy drug. As a cancer patient I was keen to check this. I just hope it works!

Cathy - London

[Foggymind in reply to Cathy777]

Hi Cathy,

I assume from some of your other posts in the NRAS community that you are taking Rituximab for you rheumatoid arthritis; I really don’t have much experience of this. I was given Rituximab once every month as part of my six cycles of chemotherapy. You are of course correct that Rituximab is not a chemotherapy drug but it is part of one of the cancer treatments used for CLL. It belongs to a group of cancer drugs known as monoclonal antibodies. These drugs are sometimes called targeted (biological) therapies. They work by ‘targeting’ specific proteins (receptors) on the surface of cells and then trigger the body’s immune system to attack the cells and destroy them. I can only tell you that Rituximab worked fine for me as part of a combined drug cancer treatment. I have arthritis myself but had no idea Rituximab was used as a treatment for it, I find this very interesting and will investigate further.

I hope your treatment is a great success and wish you very good health for the future.

Kevin - Essex, UK

[Cathy777 in reply to Foggymind]

Hi Kevin

Sorry I keep slipping out of the RA site. I assumed you were posting on there. But it is very interesting and you have enlightened me a lot. Thank you. Yes I have RA and most of the initial drugs I was put on all seem to have ceased being of any benefit. I was offered one of the newer biological drugs and because of my cancer history rituximab happened to be my safest option as some can be risky if you have had cancer. I am told it can take up to 3 months to kick in but I have heard great things about its benefits for Rheumatoid arthritis. I live in hope. I hope your health is also improving and it might be worth you looking into this.

Best wishes

Cathy

[mgh348]

Again I would like to mention that humans evolved as hunter/gatherers, and developed large brains eating animal protein. I have read many stories of vegans loosing their teeth and having nutritional deficiencies. Google Denise Minger.

Maxine

[IsabelleAndJohn in reply to mgh348]

I have read about and met many meat eaters who have lost their teeth and struggled with nutritional deficiencies... I have even lived with some...

I have also read about and met vegans who have reversed gum disease and nutritional deficiencies eating a Whole Plant Based Diet... I have even lived with some and I am one of them too...

The vegans who end up with teeth and gum problems are those who (wrongly) believe that brushing their teeth with water once a day is enough to guarantee good oral health... They are the same people who stubbornly refuse to accept that a vegan diet cannot provide them with Vitamin B12, this is the only supplement vegans need to take a couple of times a week...

It is possible to eat an atrocious junk food filled vegan diet, and of course this will be as detrimental to health as a traditionnal SAD diet...

My mum has eaten meat and dairy every single day of her life for the past 67 years, she lost ALL her teeth before her 60th birthday, her mum before her had the same diet and the same full set of denture before she turned 60 too... Both of them are riddled with osteo-arthritis and suffer from obesity... My dad ate meat every day as well, with my mum, consummed fish and dairy too, lived in sunny Provence and yet, both of them were deficient in B12, D, Iron and Calcium, both had high blood pressure and high cholesterol, both took prescribed drugs by the handful whilst making fun of me and my lifestyle...

Some great books out there to help erase some of the myths circulating on the internet are "How Not To Die" by (the amazing) Dr. Greger, all books by Dr Neal Barnard and Dr MacDougall are good too, and Dr Esseltyn has decades of experience reversing heart disease with Plant Based Diets, so does Dr Furhman...

Just wanted to off set some of the negativity... Carrot_Top is doing an amazing thing, a courageous, brave, kind, smart and responsible thing... There is a video testimony on YouTube, from a channel called Chris Beats Cancer where a gentleman explains how he reversed CLL... Not everything that has been done for hundred of years is necessary right, safe or ethical... It wasn't that long ago that doctors promoted cigarette smoking...

Wishing everyone the best, always...

[Carrot_Top in reply to IsabelleAndJohn]

IsabellAndJohn

I have been following Dr. Gregor and Chris Wark of Chris Beat Cancer. The petrie dish experiment that Dr. Gregor talked about convinced me to become a vegan. I've also read The China Study and several other books that continue to make me believe this is the right thing to do for me. My stomach issues greatly reduced after becoming a vegan and I lost 15 pounds. I also follow Ty Bollinger of The Truth About Cancer and watch many health summits. I am just trying to soak up as much as I can about health and hopefully I will stay in W&W until I'm very old and gray, but have a good quality of life.

[helenolton in reply to Carrot_Top]

I agree with you I will try anything to prevent treatment. I want a dr. to find a cure for all of us without side effects. I really do not want to have to start treatment if my quality of life will be taken from me. I am praying for a miracle everyday.

[AussieNeil Partner Administrator in reply to mgh348]

Cathy777 , Foggymind , IsabelleAndJohn and mgh348 , Carrot_Top is to be commended for reviewing their diet; it's something we should all do when we find out we have a chronic illness. Restricting meat is a good ethical choice too, given our planet has a far better chance of providing our growing population with a nutritionally adequate diet if we eat plants directly. However, I'd argue that with a chronic illness, we should be widening the range of foods we eat, particularly where the illness is gradually going to increasingly impact our bone marrow's ability to make the blood cells we make billions of daily and recognising we are omnivorous and can reuse some nutrients from meat far more easily than from plants. Concern about adequate nutrition is why nutritionists have gone away from the strict neutropenic diet; concerned that more harm may be done on the restricted diet than from the good gained by avoiding infections: healthunlocked.com/cllsuppo...

Restriction is a driver for natural selection; organisms that can function better than others under the restraint will out compete those that become sickly and die (perhaps due to genetic damage preventing them from metabolising something). That's why people on restricted diets that don't make the effort to ensure they are still adequately nourishing themselves, end up getting papers written about them.

Our bone marrow is where our body works hardest to replace worn out cells; that's why it's the limiting factor in how much chemotherapy or radiation we can tolerate. If we do decide to cut out anything that provides us with essential starting materials, we need to work much harder on our diet to ensure we are still getting adequate nutrition, perhaps by taking supplements, which for healthy red blood cells includes B vitamins and iron which are easily obtained from meat. If anyone with CLL decides to change to a vegan diet, the best time to do so is early on before anaemia can become an issue. Importantly, those changing to any restricted diet need to understand that our bodies can store some essential nutrients that can last for months or years and sometimes our bodies can make do for a considerable length of time by drawing down on reserves - e.g. calcium from our bones. Looking for changes in monthly blood tests is unlikely to identify such developing deficiencies.

I've collected diet related articles here:

healthunlocked.com/cllsuppo...

Neil

[Cllcanada Top Poster CURE Hero in reply to AussieNeil]

Anyone changing to a vegan diet..needs to have their B12 levels monitored regularly... supplements may do little...you may require monthly injections.

But overall, no changes to anything until you discusses it with your CLL doctor, GP etc... that's the general advice.

~chris

[Foggymind in reply to AussieNeil]

Hi Neil,

I agree with your point about Carrot_Top deserving praise and being commended for their diet choices, and I hope I have not offended anyone with my earlier comments. I merely wanted to highlight the fact that we all need to be careful with not just what we eat but also what perhaps we don’t eat. I applaud everyone who strives to eat a sensible diet but I also believe that some of these diets have dietary shortfalls that perhaps are not so well recognised or documented. I did some extensive research myself a few years ago both in the library and online and after reading many books and articles on the subject came to the conclusion (possible wrongly) that moderate to extreme diet changes were not proven to be beneficial with CLL. As we all know there is a lot of conflicting news stories in the medical world with regards to what is good for us and what is not and I personally get quite confused by the stories that directly contradict something we thought we knew to be correct only a short while ago. Antioxidants were good for us for some years, now they are being linked to cancer. Coffee was bad, then good; chocolate was bad, then good, then bad again, Red wine was good…… and so on. If we paid heed to all the things researchers tell us can give us cancer, then we may have to give up eating and drinking altogether! I also read in a Focus science magazine recently that that the World Health Organisation (W.H.O) also states that the air we breathe is carcinogenic but I'm not giving that up!

In conclusion I will continue as I see fit with diets that I enjoy and quite possibly are not harming me in any way. There are risks with everything we do in life and we make our choices based on what we know, believe, and most importantly are comfortable with.

Well that’s my two-penneth, for what it’s worth!

Take care everyone and very good health to you all

Kevin – Essex, UK

[Cathy777]

As a vegetarian I like to point out that some of the strongest animals are vegetarian . gorillas, pandas and elephants to start with. I think its stupid saying that anyone who chooses a particular diet is more likely to suffer from detrimental effects from that diet. Provided we get our nutrients from somewhere it makes no difference what diet we prefer. Of course our genes play a big part in what happens to us as well.

[Carrot_Top in reply to Cathy777]

From the health summits I've been watching, more and more research is showing that genes are not as big of a part as we thought. They are saying that we turn on the bad genes by having an unhealthy lifestyle. So, since the literature my hematologist gave me said that secondary cancers are common with CLL, and both my parents and almost all my aunts and uncles (I had a lot) died of cancer, I'm trying not to turn on those bad genes!

[Cathy777 in reply to Carrot_Top]

I understand where you are coming from. Good luck with your plan and I think you are doing what's right for you. It is a positive reaction which can only help. You should check out Penny Brohn centre in Bristol.

[Que-sera-sera]

Then again...isn't there something called "The Placebo effect"??

Sure, eventually we will all succumb to something, but if a little " Placebo effect" can help us along the way, I'm all for it !

[deveritt]

I've been vegetarian for almost 50 years, and over the last 10 swapped to goats milk as I have a real intolerance for cows dairy.

The two issues I've had - and learnt from - were vitamin D deficiency, for which I now take supplements occasionally, especially during winter, but which picked up after starting goats milk and cheese; and B12, for which I have injections. I had been vegan and used soya milk, but found it poor compared to goats milk. The only other supplement I take is flax seed oil for Omega-3, which seems to improve my well-being, but it's hard to tell - I identified it as lacking in my diet. Im aware that none of this may have an impact on my (13q14del) CLL, but CLL has made me reassess my diet. Just sharing for any other cow-dairy-intolerant vegetarians in the same situation.

[Cathy777]

We are all uniquely different and, like finding the right drugs that work for us, we have to find the right foods. My veggie diet suits me and my only real food concern is the amount of sugar and salt we put into ourselves. I have had a lifetime of sugar and more sugar. We all have. My upbringing was in a time when sugar was not seen as such a danger. I am lucky I still have all my teeth but dread to think of the other damage my body has endured. Diet is important of course. If you feel better being on a strict alternative diet then you will feel better. Our minds play an important part in health too.

[carnvellan]

I just want to thank all contributors to this thread. I have read every one carefully and taken my time over it and found it really helpful. Thanks to all.

[Carrot_Top]

I had my 6 month checkup today and WBC is going down again. WBC is down to 13.3 from 16.4, ALC is up to 9, but I have had it as low as 4.63. I did actually get my WBC in the normal range last year and that is when my ALC was 4.63. My doctor told me to keep doing what I am doing - vegan diet, etc. So that is my plan. I do treat myself about 4 times a year to seafood because I LOVE seafood.

[AussieNeil Partner Administrator in reply to Carrot_Top]

Given you'll need to monitor your haemoglobin more carefully with CLL on a vegan diet, I'd strongly suggest you use one of these spreadsheets to keep track of your blood test results:

cllsupport.org.uk/cll-sll/s...

cllsociety.org/toolbox/keep...

Doing this will also give you a much better feel for how well you'll be able to fight off infections as well as track other blood counts that can be affected by your CLL, most importantly your platelets and kidney and liver function tests if you continue to take supplements.

Previously you said your ALC was 8 in February and it is now 9. Meanwhile your WBC has dropped from 16.4 to 13.3. This means that your other infection fighting white blood cells have dropped to around half what they were, from (16.4 - 8) or 8.4 to (13.3 - 9) or 4.3 if I have your figures correct. This is probably nothing to be concerned about; I expect you still have more than adequate neutrophils, monocytes, eosinophils, etc to keep you healthy and some of these were probably a bit higher in February because your body was dealing with an infection or reacting to an allergy, but without looking at individual counts we can't be sure. Doctors tend to ignore out of range results because white cell counts do jump around a lot with infections/allergies.)

I found out after my SLL/CLL diagnosis that I was neutropenic (low neutrophil count) 2.5 years before an investigation into worsening neutropenia led to my diagnosis, so with that and worsening fatigue, I'm fairly certain I had SLL for many years prior to my diagnosis (which was stage IV). My doctor back then had said my blood test results were fine! When I was diagnosed with SLL/CLL, my specialist was concerned enough to have me on monthly blood tests for 18 months and I used those frequent blood tests to see how the supplements I took influenced my blood test results. I found out that over the counter supplements I'd been encouraged to take to help my immunity by someone well meaning, along with the high dose of green tea was harming my liver by monitoring my ALT and AST liver tests. (These are included in the metabolic panel tests.) My ALT increased 4X above normal and twice the upper normal limit and my AST nearly doubled. I stopped taking the immunity boosters and cut back on the green tea after discussing this with my specialist and within a couple of months my liver test results were within healthy ranges again, but it took around 6 months for them to return to my normal levels.

Neil