i have joined this forum after searching for alternative treatments to chemo for my dad (83) CLL 8 years on. I am very open minded with a slight bias against chemo after watching my mum suffer and pass from breast cancer. So not wanting my dad to have chemo unless it’s a last resort.
As such i have looked to alternative treatments largely unseen and unsupported in main stream medical communities. I recently attended a medical tour with my dad with Prof Angus Dalgleish & Dr Paul Marik. I understand many will consider these specialists as conspiracy theorists and black banned from the main stream but i consider their years of service to the cancer field valuable and worth considering. Dr Paul Marik has released a book called Cancer Care which discusses repurposed treatments both natural and synthetic. Some of which i have had my dad trying for 2+ years. As such his Hematologist has remarked the bloods are not bad and at one point dropped alot which was good. However she is now recommending chemo tablet and nothing else. Has anyone else tried alternative and /or synthetic treatments and if so was the result positive? Things like vit d3/k2, vit c, zinc, quinine, and the shunned ivermectin (gasp!). Also he saw an article suggesting immunotherapies called Venclexta & imbruvica. Hope my thoughts don’t get me burned at the stake! Im genuinely looking for treatments which are not bad in side effects and have a positive effect on keeping the CLL at bay. Thanks for understanding in advance. 😀 look forward to hearing ideas.
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Not knowing anything about your Dad's CLL treatment history or markers I'm still surprised chemo would be the only option offered. There are a number of highly effective targeted drugs that have good results in treating most forms of this disease with Venetoclax and Ibrutinib just being one combination of orals.
Others with far more disease experience can weigh in, but if he's not seeing a true CLL specialist that would be my first recommendation.
Thank you Bigfoot, cycle wonder & spark plug! I have heard chemotherapy on blood cancers can be different to solid tumors but reading the potential side effects in the brochure was not nice.
I am obviously quite uneducated on CLL because all the points people make show me how much i don’t know. So i need to get up to speed. I didn’t know there are CLL specialists. Hopefully they will advise about options like BTK inhibitors. I’ll look for one in Victoria- thanks for that tip!
His GP referred him to this hematologist clinic 8 years ago and i think in that time he has been under 3 different hematologists. I have only been allowed to join one appointment so far. He has been on watch & wait until 6 months ago where the first and only option was the chemo tablet. He decided to wait and review in 3 months. Hematologist thought his symptoms may be thyroid but they weren’t. He’s due in December to go back. Bloods are due in November.
I will look at the blood markers you listed and compare to the previous to see if they are doing what you suggest. Again thank you!
We both feel the vit d is making a difference & will keep at that & other supplements as he has no side effects so they cant hurt. I make home made quinine drink and when he runs out he starts to feel worse so we’ll keep at that. We tried black seed oil but he got a rash. We tried castor oil wraps for spleen discomfort and they help so will keep at that. Symptoms are vague. Lethargy, aches and pains, chills.
Notably his elder brother has a different type of leukemia smouldering multiple myeloma but he is much worse and advanced and has tried every main stream treatment he has been offered to no avail so is considering assisted dying sadly. He is in a different state. He also doesn’t ask questions and just goes with what he is told.
I want to be more involved without bring intrusive for my dad! Thanks for the info i will research! 🧐
For what it's worth. I was diagnosed as Vitamin D deficient in 2019 (5+years before my CLL diagnosis) and have been taking 50mg of D3 daily. I'm still taking it and my CLL (which has some aggressive markers) has been reasonably indolent in my first year of the disease. I intend to continue taking it and hope it extends my W&W. When treatment time comes I'm hoping my first treatment is a BTKi + BCL2 combo unless a better option is available at that time.
Yes i think the vit d is wonderful! I’m glad to hear the disease is behaving and hope this continues for you! I have found a possible specialist at St Vincents & will see if we can get a referral- hopefully he can actually educate us rather than just saying what treatment path is recommended. Ideally i want to understand the ins and outs better to make informed decisions. Thanks again 😀
We see a number of people with initial resistance to the best available treatments because of previous experience with cancer treatments. CLL is a completely different beast compared to solid tumors cancers. Many advances have been made and chemotherapy is rarely the first line treatment.
CLL is also different in that it is usually not treated immediately. Instead, doctors watch their patients until treatment is needed. While an elevated white blood cell count may lead to a CLL diagnosis, CLL specialists rely on other indicators to decide treatment is warranted. CLL specialist look at how the patient is feeling, whether they are losing weight without trying, experiencing night sweats, and if they feel fatigue that affects their daily living.
They also look at blood test results: Hemoglobin dropping below 10, platelet count dropping below 100, neutrophil count dropping, and if the absolute lymphocyte count doubling within six months. These blood test results often correspond to how a patient feels.
Based on a CLL specialist assessment, the specialist may recommend a treatment. There are BTK inhibitors, non covalent BTK inhibitors, and other pills and infusions.
The BTK inhibitors have side effects but are generally mild compared to chemo. People don’t lose their hair or experience severe nausea. And these are very effective.
The goal of these medications is to force the deformed lymphocytes out of lymph nodes and the spleen into the bloodstream. Then the medications flip a switch that allows the lymphocyte to die.
Vitamin D has been associated with a longer Watch and Wait period.
I would ask that you spend some time on this site learning about what treatments are available for your father and not to reject these treatments because they are medications. You would be doing your father a huge service by using the resource of a CLL specialist.
The body is very complicated and when you delve into what causes CLL and what helps a patient with CLL, it can be mind boggling. New discoveries are being made which illuminate new communication pathways between cells.
I'm not going to tell you what you don't want to hear. However, chemo is going the way of the do-do, with monoclonal antibodies and small molecule medicines progress and treatment is becoming the norm.
One thing that I find encouraging is that if a certain combination has poor results (ineffective, or intolerable side effects) there are other classes of these newer drugs that may be suitable.
One thing to bear in mind all substances have the potential for adverse side effects to some degree. If you're not looking for a magic bullet, there's plenty of ammo to help your dad live and retain a measure of quality of life. 🙂
Probably one of the best CLL specialists in Melbourne is Dr Philip Thompson at the Peter Macullum.
I'm 6 years younger than your father and in my 19th year with CLL, but still symptom free and without treatment. I have endeavoured to live an unmedicalized life and so far so good. I am on a similar page to you and your father as far as chemo-avoidance is concerned, but should the need arise, a CLL specialist would help manage symptoms with a softer approach. You don't try to cure an 83 year old.
I don't use any supplements, but rather rely on diet, exercise, lifestyle and mental well-being. But we do what we understand best.
You aren't the first to post with concern about how hard chemo treatment might be for CLL patients, after witnessing the effects of chemo treatment for other cancers. I hope that you now appreciate from earlier replies, that there's been a revolution in CLL treatments. a few years ago, only chemo treatments were available for Australians with CLL. Thanks in part to our members submitting their experiences and support for targeted therapies to Australia's Pharmaceutical Benefits Advisory Committee, we now have subsidised targeted therapy options funded on Australia's Pharmaceutical Benefits Scheme. Targeted therapies are very selective for B cells and while healthy B cells are also unavoidably targeted, CLL cells tend to over-express the targets and hence are more susceptible to treatment. There are some off-target effects, but new generation versions of proven drugs are regularly being approved, after clinical trials show that they have equal or better efficacy to earlier targeted therapies with similar or better adverse event risks, typically with a lower side effect profile. Older chemo treatments (specifically the chemoimmunotherapy (CIT) treatments FCR and BR for CLL) weren't easy for older patients. FCR was only recommended for those 65 or younger. Targeted therapies are generally well tolerated for people even in their 80s. Those that do well on treatment have no reason to post! If your Dad ever does need treatment, I would expect BTKi therapy would be best. BTKi drugs (acalabrutinib, ibrutinib, zanubrutinib, etc.) work slowly and keep CLL under control rather than curing it. Only about 10% of patients on the BTKi drug ibrutinib got to undetectable MRD levels after 4 years of treatment after which some patients can stop taking it for up to several years. Fixed term combination targeted therapies also work more slowly than older chemo treatments, which were completed in 6 x 4 week cycles. They wouldn't be appropriate for your Dad, but a course of combination targeted therapy for CLL usually takes at least a year to complete.
With respect to Professor Angus Dalgleish and Dr Paul Marik, I first heard of Dr Marik back in 2017, because my CLL caused chronic severe neutropenia and I was at high risk of sepsis, which can quickly prove fatal without emergency IV antibiotic treatment. I've had a few episodes of febrile neutropenia requiring around a couple of months of IV antibiotics in hospital in total, so when Dr Marik reported great success in reducing sepsis fatalities I closely followed the unfolding events. Unfortunately his treatment protocol couldn't be replicated elsewhere. The high incidence of deaths due to sepsis is a well recognised emergency care problem internationally, so there was a great deal of interest in his protocol by emergency care doctors. When I've presented to emergency with what I suspect is febrile neutropenia, I get treated with the same urgency as if I had a suspected heart attack or stroke - that's the standard of emergency care in Australia and hopefully elsewhere when it comes to the risk of sepsis.
Why Dr Marik's protocol failed elsewhere is, I suspect, due the reason why we have randomisation in clinical trials. See: healthunlocked.com/cllsuppo... Basically, when doctors are trying something new, they can subconsciously assign patients who they think will have a better chance of survival, to their new protocol, rather than the standard of care comparison arm. This is also why we have blinded and even better, double blinded clinical trials, when neither the doctor or the patient knows what treatment the patient is being given.
I expect you are aware that Paul Marik went on to become one of the founding members of FLCCC, which promoted hydroxychloroquine and ivermectin for prophylaxis and treatment of COVID-19. Both treatments were found to be ineffective in that regard. (The interest in ivermectin was the result of a reputable Australian report into in-vitro research in Vero/hSLAM cells in rhesus macaquessciencedirect.com/science/a... ). I followed the resultant research closely and while I was initially skeptical, given the research was in-vitro, not in humans and required higher than approved dosage of ivermectin in humans for de-worming, ( Just 5% of therapies tested in animals end up as human drugs healthunlocked.com/cllsuppo... ) I began to wonder if I was wrong, when the news broke that the largest study supporting the use of ivermectin was faked! You can read my regular coverage of the long, drawn out saga here: healthunlocked.com/cllsuppo... Eventually a very large, well performed study confirmed that ivermectin doesn't help with COVID-19 healthunlocked.com/cllsuppo...
With respect to the use of ivermectin for the treatment of blood cancer, the reference I found dates back to 2010 and was for Chronic Myeloid Leukaemia, which derives from the myeloid stem cell line, not the lymphoid stem cell line from which CLL arises Further, only mouse model studies were done. pubmed.ncbi.nlm.nih.gov/206...
Professor Dalgleish has a conflict of interest when it comes to COVID-19 vaccines. He's a medical board member of a pharmaceutical company that has developed Biovacc-19: A Candidate Vaccine for Covid-19 pmc.ncbi.nlm.nih.gov/articl...
With respect to his claims about DNA in COVID-19 vaccines, Dr Susan Oliver, who has a PhD in nanomedicine looks at the evidence in this video
The best evidence for managing CLL without expensive drugs is simply keeping fit! healthunlocked.com/cllsuppo... with greater evidence building all the time Maintaining an adequate level of vitamin D is also worth doing healthunlocked.com/cllsuppo...
I've documented my research into many of the suggestions into proposed alternative treatments for CLL here
Thanks Neil! Very informative. I’ll read the links and watch the videos. It is uplifting to hear the treatment protocols have changed and are now available in Australia on the pbs. Sounds like members have been instrumental in making that happen! I don't recall the name of the chemo he was told to start but it was to be for life. The BTKi path sounds promising and i’ll research that more thanks. Sorry to hear about the neutropenia and that the protocol of dr Marik couldn’t be replicated. Hopefully there are more double blinded clinical trials in the pipeworks which offer viable solutions for this and more. I haven’t seen anything specifically on ivermectin and CLL but have seen promising things for other cancers so will watch that space with hope. I agree lifestyle plays a massive part and am encouraging dad to reduce sugar, keep active etc. hopefully a holistic approach works for him and many others!
Good on you for encouraging your Dad to live a healthier lifestyle; it may be all that he needs to avoid treatment. Given the treatment suggested for your Dad would be for life, it would be a BTKi drug as I mentioned, which could well be a better one by the time he needs treatment if that ever happens. Targeted treatments are colloquially called 'chemo' as in a drug that treats cancer, but they don't affect the cancer DNA so we term them 'non-chemo' in our community to differentiate them from the older, tougher to take chemoimmunotherapy treatments.
With respect to Paul Marik and his FLCCC co-founder Pierre Kory, "The American Board of Internal Medicine revoked the certifications of Pierre Kory and Paul Marik, two physicians known for continuing to promote ivermectin, an anti-parasitic medication, as a treatment for covid long after the medical community found it to be ineffective." unmc.edu/healthsecurity/tra... Such de-registrations are rare and the process is lengthy, so they are notable.
With respect to anyone promoting an alternative treatment approach, watch what they say and then watch what they sell. With the pandemic over, the cynic in me wonders if falling sales are behind the switch to promoting ivermectin as a cancer treatment. The only way to be sure is a double blinded randomised trial. Promoters of alternative treatments argue about the cost of doing such a trial for FDA (or the equivalent authority in other countries), particularly for low cost drugs, but there's nothing stopping anyone from properly recording how their patients do on their protocol and publishing the data openly for interested parties to study.
You are correct Neil it is a BTKi. Unfortunately not understanding the difference and the hematologist calling it chemo put us on defense! It is called Acalabrutinib. With respect to Ivermectin i can only hope the double blinded clinical trials are conducted by someone and a definitive answer can be made known. Until then we can only try what we can. It looks like thanks to this forum i have alot of leads and research to do!!
Acalabrutinib is definitely not Chemotherapy. I am not a medical linguistic expert, but I do know that. I, like many on this forum, was put on the Ibrutinib and Venetoclax combination for 2 years and since then have been on a reduced dosage of Ibrutinib. As Neil described above, I was one of those who did NOT get cured, but my reduced dosage has kept the disease at bay. All numbers are good, no symptoms, and very few, if any, side effects. I was 65 when I started the drug and am 73 now. Now, I think of my CLL as the “diabetes” of blood cancers. I live an almost completely normal lifestyle. The BTK i’s have literally been a lifesaver to many.
CLL has seen so many treatment advances.. Myelomas so relatively few.. my uncle passed with AML 30 years ago, and the treatment options remain limited.
If your dad is seeing an expert consultant, and all options are on the table, treatment doesn't need to be chemo, and your fears of chemo side-effects don't have to be realised; breast cancer can be very resistant to treatments 🙏
My first CLL treatment was delayed a little too long.. led to complications/harm to my kidneys and fewer treatment options..
Thanks Shedman. I am sorry to hear about your complications and resulting fewer treatment options. I’m grateful for all the advances in CLL as my dad is very important to me! I hope some of these can give you a new approach too? Dad is just under a regular hematologist currently but we are going to chase a lead for a CLL specialist at St Vincents in victoria. Professor Constantine Tam. Hopefully we can get in to see him after a waiting period no doubt.
I've long recognised importance of nutrition; used to have multiple deficiencies (white spots appearing on nails : minerals; wind sensitive eyes : vit A; asthma : worse for low vit D, maybe magnesium; .. egg allergy unidentified : inflammation) - I quite regularly take a multi vitamin containing methylated B vitamins, trace elements, vit c, d, k2..and I helped an MECFS patient recover.. mostly, in their case, a Vit A deficiency.Be aware that quinine is complicated; a little tonic water containing quinine is okay, a couple of litres can land you in hospital. I've not read any suggestion it helps our CLL.
Ivermectin isn't indicated, though excellent for treating / killing parasite worms.
Thanks Shedman- agree totally! Lifestyle and supplements where indicated are great. Yes aware too much quinine can be an issue but we both have a couple of mouthfuls of the drink daily which is just the peel of lemon and grapefruit boiled and cooled then liquid squeezed out and peel disposed. Even i have noticed if i get a sore throat i have an extra mouthful and its gone within the day. My das says it helps reduce his inflammation and aches and pains and notices when he runs out.. so i’m sold based on personal experience! ☺️
youtu.be/Xt46BNxd8qc?si=k_H... this is the recipe i follow. But when i look up quercetin recipes it is very similar and has similar purposes. Interesting
Well, Tracey is confused - you get quercetin from these citrus fruit piths, not quinone (nor hydroxyquinine HCQ) ! Always check random online sources !
The other thing to check is drug interactions: grapefruit (and Seville orange marmalade) impacts the CYP enzyme.. It's a no ❌ when taking ibrutinib and a few other drugs..
Thanks Shedman. The recipes are the same from what i can source, same ingredients, same process, same end product. Here’s one which calls it quercetin youtube.com/watch?v=ddVYUv6.... All i know is that it keeps nasties at bay for me & aches & pains at bay for dad. But yes i did read that grapefruit needs caution with many meds including the BTKi one he's been told to start so if he does we’ll have to stop it. I have looked to see if it is dangerous drinking a byproduct of the peel and not the flesh/fruit or juice but cannot find anything definitive. Only info on flesh & juice which he doesn’t consume. The peel is thrown away also so its hard to stay if it brings the same risk.
If there were alternative therapies that could keep CLL at bay, people would not be taking super expensive immunotherapy tablets. Which are not chemo. Unless those guys are CLL specialists you can forget them right away.
True LeoPa, but i guess new ideas have to start somewhere and hopefully with time and legit studies more will be known as to efficacy of all such things. I try not to discount anything until absolutely proven.
If you check my bio and posts you will see plenty of alternative strategies there but none of them collide with proven conventional therapies. When the time comes to treat, there is no more wiggling room. Until then, lots of things can be done. I point out most of them I think.
have been on Alacabrutinib (Calquence ) for 2 years and now in remission it is a tablet but classed as chemo no great side effects apart from bruising go for it
Acalabrutinib is not chemotherapy. It is cytotoxic, cyto = cells, toxic = kills em. Don't let anyone tell you it is chemo, that stuff damages DNA when it is being copied during cell division.
The bold text above is from last sentence of 2nd paragraph of this link.
Hi Wella. It’s possible your answer may be closer than you think. Can you clarify what you mean by a “chemo tablet?” I’m not aware of any such thing. What is the drug?
I’ve had this discussion with medics on many occasions and they will insist on describing my Zanubrutinib as ‘oral chemo’. It seems to be used as a medical coverall for convenience. They did the same with Ibrutinib & Venetoclax.
Frankly I find it easier to describe my treatment in these terms to others such as relatives and friends because the technicalities baffle them (as does CLL as a condition!) 🙄
Hi Lily Pad Master, i think i have figured it out! It seems as others have pointed out that Acalabrutinib is often explained as an oral chemo tablet by hematologists etc. but know i understand it is in a different category of the BTKi ones. I am relieved that it is not Chemo per say! Thanks 😊
The best to your dad and so awesome he has such a good advocate learning the ropes and gathering the info! That is a priceless gift to him and I am sure means so much to him! Love beating up on cancer!💓
I am all for natural remedies as a first line of treatment for small stuff, but when it comes to cancer I'm not messing around. Modern medicine is my first line of defense. Healthy lifestyle is always a good idea. If you are in the US the CLL Society offers a free 30 minute second opinion with a specialist once you are narrowing down your choices. Wishing your dad well.
Some of the greats have chimed in on your post! This is an amazing community. I kind of knew you were going to get a ton of really great information, so mostly, I was just saying "Hi. Welcome."
Best of health to you and your Dad. May you find your way to these drugs. Here's something you likely already have. Just wanting to help!
FWIW I'd like to point out some "language usage" that the docs may use, that perhaps needs clarification for you.
Many medical professionals may use drug therapy terms colloquially; so a medication used to treat a patient's heart disease may be "your heart med" even if the drug has other disease uses. So the same med maybe a "heart medicine" for one person, and a "hypertension medicine" in another.
This can be confusing with cancer treatment. Because the colloquial term for certain single drug agents, in addition to a combination of drugs given in a standard protocol, maybe referred to as "chemo". Even if drugs in the protocol aren't considered standard chemotherapeutic agents, office staff may refer to a patients "chemo".
So some meds used in CLL may be standard chemotherapeutic agents (chlorambucil, bendamustine). They may be immonotherapy (monoclonal antibodies [MABs] antagonizing CD20 like rituximab and obinituzumab) or they may be "targeted" agents. Currently our targeted drugs include the kinase inhibitors against BTK and PI3K (the drugs generally ending in "ib"), and BCL 2 antagonists (venetoclax and sorontoclax; I would bet $$ that all new BCL2 targeted agents end in "ax" moving forward).
I know this is confusing, but if a doc is talking about "immunotherapy" they are probably referring to the MABs, and "targeted agent/targeted drug" would be the "ib" and "ax" ending meds. On top of it all, to cause even more confusion, staff may refer to any of these agents, or their combos, as "your chemo". Because they mean it as "the drug(s) being used to treat the cancer."
So ask more questions; when that doc says "chemo tablet" they may actually be referring to a targeted agent. Which can and does cause immune suppression like the standard chemotherapeutic agents do (as well as the chemoimmunotherapy ones), but the drug classes that aren't "standard chemotherapy" generally don't cause the extreme immune suppression & severe GI effects and extreme hair loss. Not to say it never happens, but the severity generally isn't the same. Plus, nowadays, one can potentially switch treatment if a particular drug or combo is causing severe side effects.
Thanks Sofia! Such a helpful explanation! Really appreciate that as I'm a novice ! I set sone time aside to digest it all. But i agree asking questions is best! ☺️
Hi, You will think I am crazy when I say this is a good time to be treated for cll.My Dad died in 1968. I was aged 10. As a child I didnt know anything about his illness but my Mum has given me some facts. He lived 3 years after being diagnosed and he had already got symtoms which shows he had had cll a while. There was nothing to treat him and he needed blood transfusions to change his blood. This is an example of not being treated. He was only 45.
I was diagnosed age 43 with cll in 2001. It was in the early stages and it was 9 years before I needed treatment. Chemo was the only thing but with the addition of a drug called Rituximab which was a game changer. It was for 6 months and nothing like as bad as I expected and I didnt lose my hair. It worked and I didnt need more treatment for 8 years.
In 2019 I began a tablet called Ibrutinib. I imagine your Dad is being offered a drug like this. These drugs are being developed and improved more quickly than you realise.
Its amazing to think that you can take a tablet and go about your life.
If you look up Btki inhibitors and how they work you will be amazed. Scientists can look at a single blood cell and see what part of the cell is multiplying , I cant explain that properly but the tablet is the inhibitor.
Sorry for my long post but you can see how over the years we have gone from no treatment to chemo to chemo with Rituximab and now tablets It is nothing like the chemo that your Mum had. Some people have no side effects and others have relatively mild ones. I had aching joints. As time goes on these improve or the dose is lowered.
If your Dad has spleen pain, there must be a reason he needs treating. Over the years people have tried to avoid the medical way but it just puts off treatment. Why dont you find out what drug they intend to use? Let your Dad try it. You need to insist on going with your Dad and the haematologists need to explain what is going to happen.
This site will give you advice and help you, all the best Anne uk
Hi Anne, thanks for showing me that trajectory. I am so sorry you lost your dad. You were both too young. I’m so glad to hear you’re going well with your treatment. Dad is being offered acalabrutinib. Which i have learnt here is a BTKi. Looking at a single blood cell sound so amazing and i hope we get to look that in depth at this and really understand it. Yes i have to insist on going with him now. I just wanted to not overstep. But i think this has led to him not asking any questions and us not understanding anything as a result. Thanks and all the very best for your treatment 😊
Acalabrutinib is very successful I have read. Dont be afraid to ask the doctors for advice. Write down lots of questions so you come away informed. I have had cll for 23 years. Your Dad is older than I was and its possible the treatment will give him a longer life. I have a few issues but I will see the specialist in 4 weeks.Stay strong, Anne uk
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