I just been diagnosed with CLL, very curious about natural treatment options.
My WBC count is about 13000 and I have low blood platelets count, my main problem is I get bruises everywhere if I dump into something.
I’m searching for natural treatments how to get more blood platelets.
Hello & welcome to the group no one wants to join voluntarily. You are in the right spot, there are some great minds with diverse experiences on this cancer journey. I was diagnosed in 2009 when a large neck lymph node protruded from my neck after telling my doctors a year earlier that something was wrong with me because of extreme fatigue. They biopsied it & boom bang pow I have CLL Leukemia. I had 13yrs of Wait & Watch before needing treatment.
But let me say this, learn all you can about the disease from Peer Review Sources, reputable sources. Then or simultaneously find a CLL Specialist. I am a Naturalist too but I never found anything to increase my platelets. My first Oncologist was good & after the biopsy he ran all the needed FISH & IGVH blood test. He was able to tell me from all the data that I had an Intermediate type of CLL Leukemia. It means that my numbers will fluctuate. 30% never need treatment but that’s because they are diagnosed in their 70’s & die from natural causes I believe.
In any event learn all you can, get a CLL Specialist & take the best care of yourself. I did present with bruises when I was living with my boyfriend & I swore he was beating me up in my sleep lol. I don’t remember any great bruising issues but if I bumped into stuff yeah, so I stopped bumping into stuff🤷🏽♀️
My Lab has Normal Platelets range from 130-430, I was 115 for 10yrs & then when the platelets started dropping my bone marrow was full of lymphocytes 98% & last to drop was my Hemoglobin. I was weak, dizzy, enlarged spleen & my digestive tract was not functioning properly. I had a Sinus Infection that lasted 6 weeks on 2 different antibiotics. To me you have to find a way to strengthen yourself for the long haul. Your health has to become a priority!!! Many will respond & good luck on this journey 🙏🏾
Thank you so much for good Information 🙏🏻
Luckily my health has been top priority for the last 10 years as I work as a health coach.
I started complaining to my doctor that I felt fatigue about 2 years ago, he ran the basic blood test and found out that my platelets was about 120 and my WBC at that time was 9500, he assumed that this was due to some viral or bacterial infection.. when I did the test about a month ago my platelets was up to 168👍🏻, but my WBC was up to 11500, so we waited one week and ran another test, then my platelets was below 100 and my WBC was 13500, then he sent me to the hospital for a bone marrow test and the results was CLL!!
Are there any natural interventions I can do, like exercises or dietary supplements that can be helpful for CLL?
As you are already a health coach I doubt you need any advice on diet or exercise, so I am afraid the short answer is No. The majority on this site will I believe agree that when your haematology consultant, and that should be a CLL specialist, says it time for treatment you accept that advice and discuss treatment options.
Colette
Thanks for your reply, yes sure as I health coach I know a lot about diet and exercise, but I think that exercise for healthy people and people with CLL can have different effects on our health..
Ex sample is HIIT training good for CLL, or should I slow down to do Peter Attila’s zone 2 training without HIIT, for strength training is it good to go all the way to my x-rep max, or is it wisely to hold back a bit?
I was searching but couldn’t find any studies about this for CLL patients..
For diet are there any studies showing that plant protein diets are better than red meet diets? Is it good to eat lots of greens, and what greens can have the best effect of blood platelets?
I have lots of unanswered questions as a newbie on CLL. I appreciate all your comments thank you 😊
There is an ongoing study on the effects of CLL and HIIT taking place currently at Surrey University lead by Dr Peter Bartlett ( previously he did research at Duke in USA ) I was involved in the early part of the study but stopped because of an incident of Afib, which can be linked to the use of Ibrutinib. Early days but you might some information is available.
I am not aware of any specific food and CLL studies, although Dr Bartlett is looking at participants diet.
Not CLL specific, but interesting, is the Zoe research in London done by Dr Tim Spector on nutrition.
joinzoe.com should work.
Colette
Hello, you're in a great place for help and information. My 2 cents after having been through treatment and now remission for 3+ years, is avoid stress and those who bring it or add to your stress. Of course we can't control what comes in life and it's easy to say don't stress, but I've found I can be my own worst enemy sometimes. I do my best to stay out of the what if's.I avoid it for my health sake!
hello, had a recent initial finding of cll in Jan2024 Lymphs29k, 88% of total WBC Platlets of 198. Just had my 3 month follow up and number are similar but Platlets have dropped to 140 and CT scan revealed mild enlarged Spleen. My Doctors have said like I'm sure most in this group would agree there nothing really proven to change the progression of CLL in the wait and see period and need to focus on the overal long term health of you heart, spleen, liver etc. As a person who is proactive and is uncomfortable the phrase "Wait and Watch" I've been researching many different things. So far knowing there not much can do with CLL until treatment may happen I pivoted to possible ways to hold back progression through diet, exercise and supplementation. Goal is too keep my liver/spleen healthy and clean and support RBCs. Ive started an anti-inflamatory high protein low carb diet, weight training and walking. Consulted with a Homeopathic/nutritionalist Dr friend who specializes in Leukemia/Lymphoma who recommended avoiding high mucus causing foods and fats to prevent "slugging" effect on Spleen and vitamins of Vit D w/ K2, B12, Mulit B and some others. Supplements suggested Mushrooms extracts to help support RBSs and liver like AHCC(Immuno kinoko) Raise Qi, Eight treasures. For anti inflamatory just taking a fresh tumeric/Ginseng shot. NOTE: I am more of a traditionalist with medicine but Ive known this Dr for many year so will give some of it a try. Worse case my over health should improve. working to get to a BMI of 17%, liver enzymes normal and possible reduction in spleen size. we will see. I have blood work follow ups in Sept & Dec and can communicate on progress if interested
Yes i’m interested to see your progress report. I’m still under evaluation, waiting for the results of my CT scan and bone marrow test.. I will update when I get the results!
Welcome to the group no one wanted to join!
How were you diagnosed - did they perform a flow cytometry? This is the usual way CLL is diagnosed. Do you know what your markers were? From your complete blood count (CBC) do you know what your absolute lymphocyte count (ALC) is? The ACL is the the number of B cells.
This probably sounds like strange questions, but with the dramatic drop in platelets, Thrombocytopenia (ITA) can be either a primary condition or a secondary one. As I understand it acute ITA can be triggered by a viral infection and resolve itself in about 6 months. It can also be secondary to the CLL because CLL is a cancer of the immune system which can cause all kinds of dysregulation.
As Neil pointed out platelets can be low but stable. My immunoglobulins are all low but I haven't had repeated infections. CLL is a frustrating, confusing disease so in my limited knowledge it is worth asking your doctor if the platelet drop could be acute ITP and the CLL was an incidental finding, which means your platelets could well stabilize.
On the natural, I would suggest having a metabolic panel done so you have a baseline & know what your levels are & if any are deficient.
Please let us know how it goes.
try a b complex and high dose C. Lots of water no alcohol consumption. Also a D3 with K or eat a ton of green leafy veggies. I’m doing all of them and seeing improvements
A word about low platelets, that term has various shades of meaning. Mildly, moderately, or severely are what needs to be determined.
That's why we encourage people to share their labs (obviously remove personal information). One gets a clearer picture, one reference range states anything below 130K as low, my doctor isn't worried about my 89K -94K and has ok'ed me for two surgeries so far.
It's best to pre-determine before hand what you and your doctor consider absolute red line numbers where action will be taken. The closer you partner with your doctor the less you worry in the future. 🙂
There are defined severity levels for thrombocytopenia (low platelets) and it's when they drop below 50(,000) that they become of concern. With CLL, platelet transfusions are recommended when they drop below 10(,000), or 20(,000) when ill. (There are two commonly used platelet reference volumes, whereby the normal range is either 150 to 450 or thereabouts, depending on your lab, or 150,000 to 450,000.)
The thrombocytopenia related consideration for beginning treatment used to be when they dropped below 100(,000). That recommendation changed in the iwCLL and ESMA (European) guidelines in 2018, where a lower, stable platelet count was acceptable. My platelets were stable at around 90 for a couple of years before treatment was recommended. They dropped to the low 50s for a while before I started treatment and I didn't particularly notice any increase in bruising, but did when I started treatment and they dropped below 30. CLL treatment drugs, other drugs and some foods can lower platelet counts, which is why it's important to commence treatment with a platelet count buffer. "Blood thinning" medications also increase the risk of bleeds/bruising. Platelet transfusions only last about 4 days, unfortunately.
When we have CLL, the most common cause of thrombocytopenia is CLL bone marrow infiltration. Other causes as experienced by people without blood cancer can still occur. Dietary changes to increase the nutrients and vitamins required to support blood cell manufacturing might help in such cases, such as Folate (Vitamin B9) and Cobalamin (Vitamin B12), provided there is a dietary insufficient or absorption issue.
There's continually growing evidence for exercise providing many worthwhile benefits when we have CLL, as referenced in this post healthunlocked.com/cllsuppo...
There isn't convincing evidence supporting the use of any supplements to try and slow CLL progression. That's because CLL cells are excellent at establishing a protective Tumour Microenviroment (TME) in the nodes, spleen and bone marrow which counters any effect from supplements. healthunlocked.com/cllsuppo... There isn't a TME present in in vitro testing (microscope observations of CLL cells on a slide) of supplements and it's this research which is generally used to argue for the purported benefits of taking supplements.
Neil
I am also in w and w but being as proactive as I can to keep myself healthy. I have found an integrative oncologist and have an upcoming appointment. It has been sugested to me to read
"n of 1 - One man's Harvard Documented Remission of Incurable Cancer Using Only Natural Methods" by Glenn Sabin and "Life Over Cancer" by Keith I. Block, M.D. I just ordered the books so can't say much about them.
I have met with a lifestyle specialist in Integrative Medicine who looked at my diet diary and sugested some changes. I have changed to an 85% plant based diet with fruits, vegetables, whole grains, beans, nuts and seeds. I eat very little meat, fish or dairy. I also upped my exercise quite a bit. I did it for CLL but my blood pressure went from about 160 down to 130! and I feel more energetic.
Good luck with what you do. There is a lot out there and I have confidence that people are smart enough to make their own decisions about what to do and to determine for themselves what natural and alternative treatments are right for them.
Hi Montieth ,, i have been doing the same routine and have experienced the same results ..once you see the video forks over knives or the game changers it just reinforces the obvious benefits of diet and lifestyle and hopefully convince the naysayers to give it a try ..keep up the good work your body and family will love you for it .. blessings , james 👍
cold exposure.. I found some interesting studies on cold exposure and blood platelets. Anyone tried something similar?
pubmed.ncbi.nlm.nih.gov/221...
That's a small study from 2011 in "Fifteen healthy subjects (13 males and 2 females)" (my emphasis, as in further underlining below). It is also in 6 degree Celsius water. There are risks with swimming in water colder than 15 degrees Celsius.
Per the review article of 104 studies on this topic from 2022, Health effects of voluntary exposure to cold water – a continuing subject of debate ncbi.nlm.nih.gov/pmc/articl...
Clear conclusions from most studies were hampered by the fact that they were carried out in small groups, often of one gender and with differences in exposure temperature and salt composition of the water. CWI seems to reduce and/or transform body adipose tissue, as well as reduce insulin resistance and improve insulin sensitivity. This may have a protective effect against cardiovascular, obesity and other metabolic diseases and could have prophylactic health effects. Whether winter swimmers as a group are naturally healthier is unclear. Some of the studies indicate that voluntary exposure to cold water has some beneficial health effects. However, without further conclusive studies, the topic will continue to be a subject of debate.
:
Negative health effects of cold-water immersion
While this review has concentrated on the possible health benefits of CWI, the possible negative health effects also need to be mentioned. The negative health risks to CWI are complex and include many factors such as age, general health condition, body size/composition, experience, water temperature and immersion duration. These have been dealt with in many previous publications and are discussed in some detail in the narrative review on cold water swimming by Knechtle et al [99]. The effect of accidental immersion in cold-water, particularly in extreme situations such as falling overboard from a boat into very cold water is beyond the scope of this review although, many of the potential negative effects of recreational swimming in cold water are similar. The most prevalent risks are related to cardiorespiratory problems that are often related to the initial cold shock when entering cold water [39,100–102]. The risk of hypothermia and its well-known consequences is very prevalent. Understanding the risk of hypothermia and its consequences are nicely described in a popular article [103]. In more extreme situations, both freezing and non-freezing cold injuries are possible, although these are more common in cold related activities not related to immersion in cold water [104].
So it's not something you should do without medical supervision.
If your platelet production is constrained by CLL bone marrow infiltration, you may not be able to force increased platelet production. Even if you can, you are likely to find it difficult to continue doing so should treatment eventually be required, because you aren't feeling well enough to do so and/or your infection risk is too high, given neutropenia is a common side effect during treatment. In that scenario, your platelet count could well drop down into dangerous territory.
Risk of Bleeding is based on the Platelet Count
USA Range, Australian and most other country Range, Risk of bleeding
100,000 - 149,000 cells/mm^3, 100 – 150x10^9/l, Little to no risk of bleeding
50,000 - 99,000 cells/mm^3, 50 – 99x10^9/l, Increased risk of bleeding with injury
20,000 - 49,000 cells/mm^3, 20 – 49x10^9/l, Risk of bleeding increased without injury. Spontaneous bruising will be seen (mostly on the arms and legs)
10,000 - 19,000 cells/mm^3, 10 – 19x10^9/l, Risk of bleeding greatly increased
Less than 10,000, <10, Spontaneous bleeding likely
Grades of thrombocytopenia, using international counts x10^9/l
1 LRRL – 75 (LRRL = Lower reference range limit, typically 150)
2 75 – 50
3 50 – 25
4 <25
How low has your platelet count dropped?
Neil
Thanks for your detailed answer Neil 👍🏻
On my last blood test my platelet level was 98 and yes I know this isn’t “very low” but I get a lot of bruising for almost nothing and they last for up to 2 weeks..
when it comes to cold plunging this has been done in north of Norway the last 50 years. There are groups of people meeting 1-2 times a week to have a bath under the ice, but more like short exposures 1-5 minutes. This people claim that they have excellent health outcomes from this cold plunges.
There is a new study from a danish scientist about cold plunges, that claims it’s give the participants lots of health benefits, but this study does not point to CLL patients and blood platelets..
healthsciences.ku.dk/newsfa...
So back to my personal story, I’m living in Thailand 6 months every year, and this season when I was in Thailand I didn’t know about my CLL. My lifestyle for the past 10 years has been exercise healthy food and doing different interventions to my own health for better for quality of life. So I did cold plunge 2-5 times a week for 6 months, when I arrived back in Norway I was doing my yearly health check and then my blood platelets was 168, but my WBC was a bit to high 11500.. so my doctor recommended me to have another blood test 2 weeks after just to see if the levels of WBC would drop. So the next test 2 weeks later showed increased WBC to 13500 and my blood platelets dropped from 168 to 98 in only 2 weeks.. so I just thinking maybe this happened because I stopped my could plunging several times a week. So I will do another test about my cold plunge theory when the water gets cold enough here in Norway to see if it affects my blood platelets.
our daughter and adult granddaughter started doing cold plunges 2 years ago .. our daughter had poor health and a facial butterfly type rash ; like lupus .. she went to several doctors and naturopaths . but without much improvement .. she is a vegan now and 3 months into the cold plunges the rash was finally gone ,, she is doing and looking great .. she feels better now then she has for years .. she is 53 years old and swears the cold plunges were the most effective treatment ..
Has she tried to cut out the cold plunges and remain vegan, then the opposite combination, or stop one or the other to isolate, the variable? Of course, some solutions are a combination and aren't single variable.
Still, it leaves one hanging as to any answer this provides. What is the doctor's take on this routine?
the vegan helped but the cold plunge really made a difference .. the doctor said give a try ..you are younger and have a strong heart and exercise .soooo ...they are impressed ... they usually want to attribute the positive results to something else ..
Excellent charts, Neil, I've wanted a reference like this for a while now. Do you have a source that I can use for this, or any other charts that correspond with RBC's etc.? Thank you!
SofiaDeo referenced a source for blood count severity levels used in clinical trials here healthunlocked.com/cllsuppo.... I linked to it in my reply to lankisterguy 's pinned post on considerations for starting treatment.
There's also this pinned post specifically on thrombocytopenia, which includes the severity levels I quoted above.
healthunlocked.com/cllsuppo...
Neil
Many thanks
Hi - there’s interesting information on the exercise study that Mrsjsmith mentioned at:
cllsupport.org.uk/conferenc...
I have been in touch with them, and was offered a copy of the exercise programme they’re using, which might be of use to you. I understand that part of they’re trial is with remote participants so you might be eligible.
Good luck
Chris
I have done the HIT 12 week programme with the University of Surrey and it certainly did me a lot of good and I know I need to do more. Contact either Dr David Bartlett or Ellie Miles, his PhD student. I met an electrical contractor from Norway who had a mangled little finger so I asked him how he did it "I was swimming in the fijord and I do not see the ice" He then said "I swim in the fijord every day, summer and winter" It didn't seem to have done him any harm! Then again, I was on a ship trying to anchor in Gierangerfijord when a crewman fell overboard; they launched a motor whaler to rescue him, took him ashore and he went to hospital, rejoining the ship in Kristiansand. He clearly suffered cold water shock.
""I met an electrical contractor from Norway who had a mangled little finger..."It didn't seem to have done him any harm!". Is this a joke by you or by the the plumber?
Regarding exercise, I do a little bit of working out with weights and play on an adult baseball team but my main passion is cycling. I do about 500 miles a month in the warmer seasons. I love to push myself and even competed in a mountain bike race this past weekend. I'm convinced that it helps keep the CLL at bay. I'm over 2 years now since treatment with V&R. My numbers are great and I feel great. Push through the fatigue and make yourself stay active.
Comantin: The best advice I can give you, is to seek out a CLL Specialist. I wish I had the knowledge to do that when I started my journey with CLL. After 5 years and two treatments, I now have one. It has made the difference in me being here today.
Bill
Hi,
I am interested in your diagnosis of thrombocytopenia. I was diagnosed with CLL in September 2023 with a very low platelet count and abnormal but not high lymphocyte levels. My consultant's view was that I had CLL associated ITP - not caused by bone marrow infiltration but by a "disorganisation" of the immune system resulting in the instruction to kill platelets. The result from me is a sudden crash in platelet levels rather than a remorseless decline. The treatment route has so far been to use the same medication as for ideopathic ITP - high/tapering dose of Prednisolone and Rituximab IV. Steroids alone were tried first - which did the job while I was taking them, but platelets immediately crashed after I stopped.
Rituximab has been effective so far. But I need to be vigilant for bruising and petechiae. Severe ITP will result in bleeds - including in the brain. Micro bleeds there can impact brain function. So you need to be vigilant and no contact sports.
I keep of a stock of Tranexamic Acid for emergencies to control bleeding and I have asked for an emergency supply of Prednisolone for when I go on holiday.
I should say that it is assumed that my ITP is CLL related. Conceivably there could be another cause e.g virus, vaccination (Covid!). I recently went to an ITP conference and I was the only one there with CLL.
I wonder whether it be worth checking out what sort of thrombocytopenia the medics think you have.
Hope that makes sense.
Papaya extract. It really works.
My suggestion is to run any supplement one is thinking of taking through
medlineplus.gov/druginfo/na...
Look closely at there evaluation policy "Natural Medicines Comprehensive Database"
medlineplus.gov/druginfo/na...
Unless, you can produce a study that holds to these guidelines, sadly, personal endorsement just doesn't work. Better perhaps to say, "I believe it really works".
No one here needs to be reminded at the high expense of treatment, if and when that time comes. To be paying $37.94/oz. [amazon.com/Papaya-Extract-O...] one isn't really saving towards one's care cost.
This a non- professional opinion from one who has watched too many with unrealistic hopes suffer.😞✌️
thank you
it is all natural and it works. I learned of this on another cancer site and my husband’s platelets have gone from low to now into normal zone. He went several years with low platelets until I learned of this. After he started papaya extract, the platelets basically went up 45 points every three months. In a year we no longer had a platelet issue at all. It was simply amazing.
He is now receiving chemo. After chemo they drop, but in two weeks they come back up. Still no platelet issue.
I have told several others and it has helped them as well. I am confident you will be pleased!!
According to the MSKCC Integrative Medicine Herbs, Botanicals & Other Products database; Papaya leaf extract was found to increase platelet count in patients with dengue fever.
mskcc.org/cancer-care/integ...
There haven't been any CLL specific studies. Without a randomised clinical trial healthunlocked.com/cllsuppo...
you can't be certain it will work and indeed, other members have reported no difference.
Also, Pregnant women and those with liver impairment should use caution as animal studies have raised concerns about potential toxicities in these groups with long-term use (15). (My emphasis)
Neil
I was diagnosed with cll nearly 30 years ago and i am still in wait and watch. My platelets hover between 120 and 140. I was taking papaya powder and did not see any change. I will try the extract...perhaps that will work better? I read that supplements and certain pain relievers can reduce platelet counts. I have, in the past, taken a bit of ibuprofen on account of i have a bad knee and i love to play pickleball. I stopped taking it, replaced it with turmeric/curcurmin and my platelets rose a bit to 150. Not a very scientific test... but i do try to limit my ibuprofen and other pain relievers/supplements as much as possible.
crazymazie, I, too, only get relief with ibuprofen when my sinus headache gets bad. Knowing now it lowers platelets, I take less times. My platelets have slightly risen in the last 3 months since I put that restriction on myself. I tried Tylenol and it didn't help. Antihistamines help sometimes. I live in a high humidity area and my body was not made to handle it.😊Sandra
I take wheat grass. My platelets have bounced between 250-315. I think it helps. I have been in remission for 9 months from O&V treatment.
I suggest you read THE METABOLIC APPROACH TO CANCER by Dr. Nasha Winters
The optimized, genetically-tuned diet shuns:
Grains, Legumes, Sugar, Genetically modified foods, Pesticides, Synthetic ingredients
The optimized, genetically-tuned diet emphasizes:
Whole, wild foods. Local, Organic, Ferments, Heirloom, Low-glycemic
CLL feeds on fat not sugar. Won't find sugar take up in nodes or bone marrow of a CLL patient on a PET scan (but will for DLBCL).
CLL patients should avoid live fermented food that hasn't been pasteurised.
It may have an effect on solid tumours but not for CLL blood cancer.
RITUXAN transfusion for CLL patient with ITP (Low platelets)?
platelets low
Platelet count
White blood cell count
