At the start of my CLL treatment some eight years ago HealthUnlocked was an invaluable resource. I knew nothing of the disease, of the new generations of drugs, of the role of the bone marrow and the constituents of the blood. Administrators and contributors who had gone through what I was going through guided me through unknown and scary territory.
I unsubscribed from CLL HealthUnlocked over a year ago. I withdrew because only scientific or modern Medicine was valued. Alternative or Holistic methods were given short shrift. Science based medicine knows nothing about how you feel. It can only tell you whether your blood values are within norms for a person of your age and gender.
As an elderly man I am still haunted by the ghosts of the kindly doctors who were interested in me and in my illness. This is no longer the reality. My CLL Specialist peers into his computer screen contemplating my blood values. "HG 15.1, White blood cells 6.60, red 5,00. The Alcalabrutinib seems to be working." "That's good;" I respond before shamefacedly admitting, "But I feel terrible."
Two months later the same scenario, similar results. The blood-clotting thrombocytes still hover around a lowly 50. To my surprise, the Specialist asks if I have any suggestions. I suggest reducing the dosage of Acalabrutinib on the grounds that, in a previous treatment, Ibrutinib had been suppressing the re-emergence of red blood cells, perhaps Acalabrutinib was doing the same to the platelets.
With a reduced dosage, remarkable changes take place over the next two months. My skin improves. I no longer feel so weak, fatigued, or become so easily confused. My eyes focus better. My joints are not so painful. My co-ordination, movement and balance improve. All these symptoms are listed side-effects of Acalabrutinib. Reducing Acalabrutinib reduced the side-effects. There were no negative effects on the blood values.
The strength and weakness of the latest CLL drugs is that they are highly focused. However, they are not 100% on target. To be approved they must have more benefits than draw backs. Perhaps many of the side-effects are caused by the misguided part of the drug.
Finally, I come to the main point. Three weeks ago I spent two weeks in a German hospital ward dedicated to Natural Health and paid for by normal health insurance. I was treated with acupuncture, herbs (in all forms including cabbage leaves on swollen joints), infusions (through the veins) various massages to reduce toxins, and so on. After a week I was walking with a spring in my step and a smile on my face. Most astonishing was the disappearance of the burning sensation in my feet and legs which had been worsening for years.
What, I wonder, would the hardliners of the CLL Forum make of these heretical developments? Once the pharmaceutical companies catch on that there is money to made from these crackpot ideas, they will be investing and trade-marking alternative methods faster than McDonalds began churning out veggie burgers.
The latest CLL drugs saved my life on several occasions. My life is not only about quantity, of how long I can live, it is about the quality of my life that makes it worth living. At last I have hope, desire and joy back in my life.
Glad you are feeling better, I guess your "last post" wasn't the last post.
Many of us, including me, have had to reduce our cll medicine doses to deal with side effects. It can be trial and error getting the best benefit we can with the least amount of side effects we are willing to tolerate. Stories like yours of people reducing doses and about their side effects are helpful to the community.
I think the characterization of mostly volunteer moderators as "hardliners" is not correct, as is the assumption that natural remedies on here cannot be discussed. I see our moderators as gatekeepers who use their judgment to protect an often vulnerable community from unproven and sometimes dangerous so called natural remedies.
I use massage therapy for my back. I dont have much faith in acupuncture, but its well accepted by many and a fair topic if we are talking about using it for joint pain relief. if someone is claiming acupuncture reduced their lymphocyte counts, I want to see the study and I consider that potentially dangerous misinformation. I have heard cabbage leaves having anti-inflammatory properties and using them as a salve on an aching joint seems reasonable. You did not tell us what infusions you took. I don't think anyone on here doesn't believe we can benefit from certain natural remedies. Its just that if someone is going to insist we can cure our cll by fasting or green tea or not eating wheat, people on here are going to want to see the science of it.
I think you were appropriately proactive having a conversation with your doctor about reducing your acalabrutinib dose to get symptom relief. That sounded like a wise and reasonable discussion to have. I am on a reduced dose of venetoclax due to stomach problems with it and neutropenia.
I cant tell if you are back to report your are feeling better or if you are back to revive your complaints with the administration of the site, maybe its both Either way, welcome back and congrats on your improvement.
Hi Peter, I can identify with most of your symptoms, especially the joint issues numbness, tingling struggling to walk and the profound fatigue.
What saddens me, is after being on Ibrutinib for over 8 years I was hoping to transfer to Alcalabrutinib believing that the side effects were not as bad as Ibrutinib, but having read your post I am now none the wiser.
Clinical trials can't tell (yet) whether an individual will do better on BTKi treatment A or BTKi treatment B. They have largely informed us of who will do better on FCR, vs BR, vs a BCL-2 inhibitor or a BTK inhibitor, etc. However they can (and do, for ibrutinib vs acalabrutinib) inform whether the group treated with drug A does better or worse than the group on drug B and where the specific differences occur. If you are likely to develop atrial fibrillation, the following head to head comparison shows acalabrutinib to be superior. Interestingly, following this trial, ibrutinib is being marketed as the only approved BTK treatment for which you only need to take your tablet once a day!
Acalabrutinib Versus Ibrutinib in Previously Treated Chronic Lymphocytic Leukemia: Results of the First Randomized Phase III Trial
Hi Neil I do very much appreciate your comments and do indeed agree with what you say.
But the issue for me is having other medical issues. On the one hand I am told that one benefit of your Leukemia is that it has dampened down your Behcets and on the other hand, I am told all your symptoms are related to the CLL and too much medication.
In addition I have been living with a pars fracture and forward slip of the L5 vertebrae and other complex spinal issues since the mid 1980’s, which have impacted on my mobility.
I was told that I needed surgery but it was not an option for me because of my tendency towards deep vein blood clots, I have now been on anticoagulants for 57 years and this condition has also affected my mobility.
With regards to the Ibrutinib, it has certainly worked for me but the side effects continue and have never eased up. I am now awaiting a decision on my erratic blood pressure and if this will necessitate a change of treatment.
I was taken off Ibrutinib because it started to effect my heart. My dosage had been reduced from three to one tablet a day. Over a period of 18 month the CLL re-emerged and, after a failed trial, I began Acalabrutinib, which is meant to be kinder to the heart. If you are not having problems with Ibrutinib, perhaps there is no need to change.
The list of side-effects of either drug is disarmingly long. Patients react differently to these.
I had the mistaken idea that when I was in remission I would also feel better. If my blood counts were in order and my Hg was 15+, why didn't I have more energy? My working hypothesis is that a lot of my body's energy is consumed by fighting the various side-effects of the drug.
I hope you find a good solution to your dilemma. Best wishes, Peter
Hi Peter, I thank you for your message. I am still awaiting a decision regarding my erratic blood pressure and if this is related to the Ibrutinib.
It was 6 months or so that I requested that the I brutnib be stopped as I felt that it was affecting my pre-existing symptoms from my Behcets mainly my mobility and joint and muscle pain. However I have continued with the treatment for some 8 years now. I know it has worked in respect of my CLL but I am still struggling with its side affects.
I am hoping that one of the other new treatments maybe better for me, but of course this all depends on what the doctors believe.
Welcome back , Peter. It is good to hear you are feeling better and that you have broached the subject of your dosage with your Dr. and gotten some relief with that endeavor.
Here's hoping you continue to feel better and have a good working relationship with your Dr. whom it would appear is very open to your being a partner in your treatment of your CLL.
Good to see you back Peter and to hear that you are doing well. I was very concerned that you were going to blow your life savings on Gerson therapy, though I can appreciate the temptation. Don't worry, some pharmaceutical companies are investing big in supplements. No FDA hurdles with year long multimillion dollar trials, just vague claims of improvements in animal studies and you can market your new supplement range - no testing required. Just check out the regularly offered 50% off sales to appreciate the profitability.
There shouldn't be a divide between proven and holistic therapy. Ideally we would have medicos who recommend what treatment has been proven to save our lives and complementary therapies to improve our quality of life. The problem is that there is money to be made out of people frightened because they have cancer and are worried by the possible off target effects. Consequently there's a huge overlap in what is meant by complementary, integrated, holistic, alternative, etc., with proven scammers offering treatments that don't work, but are natural and side effect free, but not free of cost. You did well finding something paid for by normal insurance. You haven't shared whether your normal insurance paid for your course in total (thanks to the premiums of others on that insurance plan), or whether your two weeks of therapy required a co-pay by you. I'm just pointing out that we pay somehow for services rendered.
I hope that spring in your step lasts, but please remember that it is scientifically based clinical trials that can work out what specifically gave you that spring in your step - just as it determined which drugs to use to save your life. Without this scientific method, we'll never know what intervention most helped you enjoy life again and whether more people can likewise benefit, for example by finding ways to reduce the treatment time to say a week, doubling the number of people who can likewise join you in better health.
Very well put, Neil. Without RCTs and multi-center, well-conducted, multi-armed open label clinical trials we would not have achieved our current base of knowledge. I am a physician and CLL patient and also a pharmacology researcher. I have long been a believer in optimal nutrition, exercise, and sleep hygiene as well as nutriceuticals and other so-called complimentary therapies. Knowing the appropriate role of all of these approaches is the key - let's not forget the complexity of cancer treatment and tip our hats to the dedicated researchers that got us to now as well as the tireless docs who do their best to take good care of us every day.
Thank you Peter for bringing to light the holistic side of care. I believe a balance between medicine and holistic methods creates a balance within the body, mind, and soul.
I used to work at the cancer centre where I am now a patient - I am in the UK. At that time - some 20 years ago, there was a lot of information floating around amongst cancer patients about various alternative treatments. And patients were choosing to stop treatments such as chemotherapy and radiotherapy in favour of aromatherapy massages, powdered sharks fin etc. They were getting these things, and other herbal remedies, from various "holistic pharmacies" around the city - from people who hadn't any training is pharmacy. The patients mostly died, a few chose to come back to conservative treatment. My point here is that you were treated in a hospital by doctors who knew what they were doing, funded by your health insurance. Alternative medicine is fine when used properly, given by people who know what they are doing with the substances, have been trained on appropriate use of TENs machines, etc. I am really glad that it has helped you.
I think people have been very polite and respectful in response to your post, I'm afraid I do not feel that way.
"I am still haunted by the ghosts of the kindly doctors who were interested in me and in my illness. This is no longer the reality. My CLL Specialist peers into his computer screen contemplating my blood values."
In the UK we have many similar uneducated media and individuals criticising doctors.
I can only speak from personal experience, but I am sure it is true of doctors worldwide. I have two sons who are Consultant doctors working in leading London hospitals. One trained in medicine at Cambridge for five years, then spent five years training firstly as a neuro surgeon then a cardiologist whilst passing membership of Royal College of Surgeons and Royal College of Physicians. He then spent four years PhD at Oxford University studying embrionic stem cells and their application to mammalian illness. Finally he trained for five years to become a Dermatologist. After that he went on half pay for 12 months to take a Fellowship in skin surgery. He now runs weekly Melanoma and Mohs surgery clinics.
The other did similar medical training for five years then trained in General Surgery for three years passing Membership of the Royal College of Surgeons exams. He then switched switched to Radiology. That involved five years training and eleven examinations to become a Fellow of the Royal College of Radiologists. He then took further specialist training in Interventional Neuro Radiology for three years (12 months of which involved training in Toronto). If you have a Stroke he has the skills to remove the clot from your brain without opening your skull. Not sure that cabbage leaves would help.....
Congratulations on the success of your sons. They sound like wonderful men and I’m sure they will help many in their careers.
Peter has been critical of doctors in the past but not in a malicious manner, in my opinion. He writes in an unvarnished and eloquent way about his struggles with CLL and how the disease has sapped his vitality and ability to enjoy life. A topic many of us wrestle with in our own lives. I don’t view his exploration of alternative treatments as an attack on the medical establishment but rather as part of his effort to regain what he has lost.
I do apologise if my response to Peter was OTT but I just wanted to emphasise from my personal experience that the CLL Specialist, whichever country they live in, (or any qualified doctor) "sitting behind a computer screen" has actually studied medicine and their speciality for many years. The complexity of modern medicine has increased hugely and CLL patients like me have reaped the benefit. Young doctors these days have to be incredibly dedicated and single minded to do their job properly. If you want an illustration of the complexity look up 'Mammalian Polycomb Proteins' on Wiki - those were the subject of my son's PhD.
With the best will in the world I can’t see how a Haematologist can be holistic on a 5 minute phone call every 9 months! I have just had 3 biopsies (from December 2019) for suspected skin cancers and recently finished antibiotics for yet another urinary infection (follow up call in November). The numbers look good, but do I?
It's said that half the German population has used complementary and alternative medicine (CAM), and so integrated into the healthcare system is it that one survey found that 85% of GPs - schooled in conventional medicine - use CAM in their practice. These are not snake oil salesmen and charlatans. Why would they?
"How German general practitioners justify their provision of complementary and alternative medicine" provides some insights bmccomplementmedtherapies.b...
I am so glad you found what works for you and you are enjoying life. Years ago I asked my oncologist what else I could do to support my well-being. She is an out of the box thinker. She told me to have a more alkaline diet which I follow and take antioxidants. I just did blood work and will see her virtually on Monday so hoping my numbers are still good. Stay well
It is also hard to tell what exactly put the spring in your step since you had multiple things going on. Did one thing do the trick, etc? How do/did they work together? On the other hand, was it just the BTK dose reduction kicking in?
Hi Peter! I started my CLL journey on alternative GERMAN Biological Medicine, a month after my diagnosis at end of 2010. I am a fan for sure!!! Previously I was very sick with my CLL. German biological changed that.Yes it was expensive! and yes it was worth it to me! Wow did I feel good for a long time It really seemed to help with not only my blood work but all my CLL side effects however NOT my lymph nodes After chemo in 2015 it was the nodes again and high%of cancer cells in bone marrow that moved me to Ibrutinib/ Venetoclax trial (dose was reduced and UMRD around one year into trial) Almost 2 years in remission now. If I could afford it I would be on German biological again. However, the biggest YAY goes to the trial that saved my life Absolutely no doubt about that but alternative medicine did indeed put a spring in my step That is for sure
This is an important discussion. We are all trying to stay as healthy as we can while dealing with a very complicated and difficult condition. At the same time CLL is very heterogeneous, to the point that we may have common symptoms but very different reactions to treatment or medication. That’s why I feel I need to have one foot planted with conventional medicine and another on the alternative practices camp. It’s not as easy as it sounds, taking care of our health is a full time job. I look at food as a form of medicine. I pay attention to what supplements I put in my body as much as what medicine I take. Ideally we’ll have both types of doctors to consult, one that is a specialist on conventional medicine and one that helps us with more natural ways of helping us to stay healthy. I use accupunture, massage therapy, consult herbalist, chiropractor, etc., but I don’t miss my regular oncologist’s appointments. This is a complicated condition and the healthiest we face it, the better the outcome in my opinion. It is not a sprint, it’s a marathon… peace to all 🙏
Delighted to see you posting again Peter. Well done on taking control of your situation and getting yourself well. German complimentary medicine is fantastic. Note I don't use the word "alternative". I think there's a place for both allopathic and complimentary medicine. In fact I know some allopathic doctors practice acupuncture. I think/hope medicine evolves to include both in the future.
I've had similar experiences to you. ie "well the bloods look good", but that's cold comfort when you don't feel well. One of my sons is a doctor. My daughter is a complimentary practitioner. Guess which is my "go to" person!
BW,
Anne
The new generations of drugs are increasingly effective in bringing CLL into remission, which is, of course, not the same as a cure for the disease. This site is very good at giving out this information. Alternative or natural medicine is not effective in slowing CLL, but this is not to say it is useless. There are many diseases that can be treated by alternative methods. CLL is not one of them, but this is not to say it has no role in the treatment, particularly in the reduction of side-effects listed in pharmaceutical drugs. If I can be successfully treated by alternative methods in a state hospital in Germany, then HealthUnlocked should not be closed off or dismissive to such approaches.
Perhaps you remember a few years ago the "shock"and "amazement" headlines that doctors had discovered that diabetes could be reversed by a drastic change in diet. This was, of course, common knowledge in many alternative fields. Many diabetes sufferers take pills rather than change their lifestyle. Patients who are interested in "Well being" want to support their body heal itself.
Peter, We do have members who have shared how they have controlled their diabetes or even prevented their progression to diabetes through changes to their lifestyle, via changes to their diet and exercise. My GP told me I was prediabetic over a decade ago and that it was only a matter of time. I looked into the evidence and medical science behind why diabetes occurs, made suitable changes to my lifestyle and I don't have diabetes.
Per my first reply to you, I accept that there's a need for complementary treatments that support members to improve their quality of life during treatment. We are very complex beings and supportive therapies have an important role.
Getting back to your mention of diabetes, some of us may be able to slow the progression of our CLL by lifestyle changes and we support those where the evidence exists. If some treatment provides improvements in a person's survival, then there must be some reason behind why that happened. Understanding the science helps us weed out the therapies which have a chance of working and those that can be largely dismissed. If some therapy claims to work, then it shouldn't be afraid to be tested and we have very effective tools to do that.
At least in the US, one can't patent the various herbs and treatments used, so no one is pushing to study them IMO.
I wouldn't say holistic or alternative treatments are being given short shrift; if no one is posting much about them, it's because no one is posting much about them. We get to speak our mind. I've posted intermittently about how massage, or Far Infrared, or specific foods, or exercise, have helped; so have others. If there aren't posts headlining alternative treatments, it's because no one is motivated to do them. So that's one of the several factors at play here. IMO (this is my opinion, I am not stating it as a fact) HU has a problem with people making statements purported to be "facts" without documentation, if it goes against current documented medical publications and worldwide accepted medical knowledge. We can discuss studies that may or may not be faulty, we can give opinions as to what helped us or not, but we can't make *medical claims* unless there is hard data. It's the difference between saying "I tried this and it worked for me" versus "I tried this, it worked, so don't do what your doc says, do this instead". Or putting out links to invalid studies that "prove" whatever the person wants. There's a huge, huge problem in medicine where data can be twisted and manipulated, and there is an entire science behind setting up studies in such a way that whatever comes out is truly meaningful across large populations. If people make posts and claims from studies that aren't done correctly and have faulty conclusions, *that* is what is not allowed.
Regarding your acalabrutinib. There are always outliers like yourself, who apparently need a lower dose than *originally* recommended in early studies, and made it into the official monograph. Please remember, cancer drugs are rushed to market using the smallest amount of data/patients to verify the medicine actually works without causing more harm. It will take time, and more patients using a drug, to fine-tune the dose requirements. And these may *not* show up in the drug monograph (at least in the US) because it costs a lot of money to "officially" change these. People just use the drug based on what newer studies show, without waiting for the "official drug monograph" to be changed. If you read a lot of my past posts regarding drugs and dosing, I am one of the advocates for *individualizing the dose* of the oral agents. Medicine eventually did it for the original IV cancer chemotherapy meds, but it took *time* to learn that weight based dosing was the way to go. Or Body Surface Area, or whatever. IMO the future of these oral agents, like many heart disease and blood pressure and diabetes medications, is to titrate doses based on side effects. Many CLL specialists do it, but unfortunately many may be unwilling to step outside "the approved doses". Diabetes, heart disease, and hypertension patients also have many of these problems; the drugs are working, the patient is miserable from side effects, the patients have to advocate for themselves, to change the dose.
It sounds to me like you have a good doc, who asked for your input, and was willing to try your request.
SofiaDeo, thanks for sharing your user experience of posting in this community with respect to "Alternative treatments". I meant to mention to Peter the importance of suporting such claims with references from reputable sites, but you've answered it way better than I had planned to do.
Incidentally, it is possible to patent the use of herbs in treatment - or more specifically the extracts thereof. Following on from your comments about dosing and side effects, one of the challenges of using herbs in treatments is indeed achieving the correct dose. Peter, there's this oft repeated fallacy in alternative treatment promotions of "herbs being natural and natural products can't hurt you", side effect free treatment for your cancer etc. Obviously if a herb has an effect on you, that effect will have some dose response. Further, there are likely to be other effects. Which is the desired effect and which is the side effect depends on what you are trying to treat. Active ingredient levels in herbs depend on so many factors. The process of extracting them is patentable, as is mixing them with proven treatment drugs for a synergistic effect. Mitsui Norin has US and European patents for their EGCG extraction process from green tea leaf. Mayo Clinic has several patents for the use of EGCG with proven cancer drugs for the treatment of lymphomas. If the active ingredient in the cabbage leaves in one of your treatments was determined, then the variety with the highest concentration could be selected. A way to extract it would be patentable and the resulting oil, etc could be provided year round.
There's lots of you've mentioned that is interesting, but these topics in particular stood out:-
"And having seen the data after i participated in the ARQ 531, that in such a small group, there was a relatively high percentage of patients who were removed from the statistics at the company's discretion... Makes me wonder if they had a reason to eliminate my N=1 from their data."
I looked for any published results for your trial, but couldn't find them. Are you able to find this study trial report?
" deep skepticism for both alternative offerings and clinical trial data from studies funded by the pharmeceutical companies themselves"
Skepticism is good, and where research, as you have done, turns up inappropriate behaviour, that needs to be made public if we are to see any improvement in what, after all affects people's lives and may even be responsible for the avoidable loss of life. We do have fairly dedicated specialists/researchers hopefully looking out for what's best for us. Life expectancy with CLL is definitely improving per SEER reporting (see plots below).
With respect to alternative offerings, do you have any study examples approaching the quality of reporting compared to that regularly shared from clinical trials, even with your concerns? Given your comment, "if it's not been proven by clinical trial it's bunk" mentality here, what standard of evidence do you expect for an alternative offering and do you have any examples?
Neil
5 and 10 year relative survival for CLL in the USA from SEER data.
I take your points, although Chris/CLLcanada also referenced the MSKCC botanicals database years back. There have indeed been some serious scandals with the inappropriate approval of some drugs, etc. With the pandemic, we've also seen quite a few examples illustrating what can happen "When any scientist or researcher becomes attached to an outcome, there's a possible problem"
Peter,
With respect to your and Hawkeagle's concerns about how patients feel, I've been required to complete about 7 different questionnaires on my quality of life at each AVO clinical trial appointment.
Our specialists should look at our health holistically and in my opinion there should be better communication between our specialists and our GPs/PCPs. Complementary medicine has an important role to play and many cancer centres incorporate complementary practitioners. Unfortunately many otherwise reputable centres allow practitioners that go beyond the complementary role, simply because there is patient demand for it, irrespective of its scientific plausibility.
Before your edit, the numbers of omitted trial participants didn't look untoward, particularly given the trial was runing during a pandemic. People pull out of trials after all. The small trial size also means the use of percentages exaggerates the apparent issue.
Your subsequent edit however does further highlight the importance of explaining this situation. The BTK market is highly contested and already one pharmaceutical company has decided not to proceed with their next phase study. I would think that any company trying to compete where their is any uncertainty over the validity of their trial data would be in a perilous place financially and reputation wise.
Neil
Hello Jammin_me,
If HealthUnlocked position was "we will only comment on only empirically verified pharmiceutical drugs" I would happily accept this. I have always said that the information I have received about this has been excellent.
However, their position, at least in the CLL forum, is that empirical verification is the standard by which all other claims to knowledge are assessed. This is a belief, not an objective, verifiable truth. The consequence of this belief is that alternative approaches will always fail this criterion and, therefore, will be given short shrift.
Medical science tries to explain illness in terms of causes. However, human beings are sentient beings who mostly explain their behaviour in terms of reasons. Science observes from the outside. The inner, subjective, life of human beings on which alternative/complementary health is based, is out of the reach of scientific research. To claim that only one form of knowledge is valuable, against which all others are judged, is an opinion. We know lots of things that are not empirically provable. It does not make them worthless.
It is disconcerting that tautological put downs of natural health approaches are built into the fabric of the CLL site. Meanwhile, HealthUnlocked is waxing lyrical about its platform with phrases including terms such as "well-being" and "Holistic" health, terms which are plucked from alternative approaches to health. What is going on? Is the CLL site, with its insistence on science, an anomaly? Or is HealthUnlocked to blurring the lines by appealing to a wider audience on questionable grounds.
I really don't know what HealthUnlocked stands for. At least I have raised my confusions, much to the annoyance of some.
There are several hundred communities on HealthUnlocked of which CLL Support, the online support presence of the UK CLL Support charity, is one. Our community of 20 thousand members, of which 4 to 5 thousand members are actively engaged, happens to be the largest CLL support community in the world by a considerable margin. There are many other CLL support communities that allow the discussion of alternative treatments if that's your preference.
The HealthUnlocked company provides its Terms of Use at the bottom of non scrolling pages: support.healthunlocked.com/... which includes the requirement that:-
You further agree that you are responsible for everything that you transmit to or in relation to Our Site and you specifically agree that your contributions and communications must not:
:
- promote false cures for illnesses, anti-vaccination advice, manipulate contents to mislead users by distorting the truth of events, misinformation or post content that originates from disinformation campaigns;
:
Per the introduction in HealthUnlocked's statement on Community Guidelines, with my emphasis: support.healthunlocked.com/...
How communities are safeguarded?
Every community at HealthUnlocked has its own ethos, rituals and language. To recognise the uniqueness of every community, when safeguarding the communities we use a layered approach to allow us to:
- Standardised expectation of users' behaviour and contributions
- Detailed guidelines to navigate every community space on the platform
Point one is available through out Terms of use. We have create a summary below of HealthUnlocked's Terms of use, and specifically section 8. Acceptable use here. As a complement, members can find our Misinformation Policy here. support.healthunlocked.com/...
Community Guidelines posted by each community moderation team that regulate their unique space can be found on "Pinned posts" within the Posts section.
Our community guidelines are currently available via our About page, because they are published on the UK CLL Support website. Our item 13 states "Please do not promote the use of alternative treatments, as opposed to complementary therapies. Alternative treatments may deter members from seeking appropriate professional medical assistance."
As part of my admin role, I encourage members who have been recommended a treatment that I consider does not fit within the established international iWCLL guidelines , which are agreed on by CLL specialists around the world, to seek a second opinion. I might quote from the iWCLL guidelines to explain why I think a second opinion is likely to provide them with a more suitable treatment choice. Likewise if a member asks about an alternative treatment option, I check for evidence of its successful use with CLL and provide information on that.
You've questioned how our community fits within HealthUnlocked's wider coverage of "well-being" and "Holistic" health and askwhether "empirical verification is the standard by which all other claims to knowledge are assessed". Frankly, the reason is that we support people with cancer and cancer can kill, which is why the last sentence in item 13 of our community guidelines is "Alternative treatments may deter members from seeking appropriate professional medical assistance."
As you have acknowledged, "The latest CLL drugs saved my life on several occasions."
Our community guidelines allow the discussion of complementary therapies to life saving treatments per "Please do not promote the use of alternative treatments, as opposed to complementary therapies."
When it comes to claiming "proof" regarding medical treatments that seem to work in large populations, the statistical sciences and clinical trials have evolved as a way to determine who is most likely to benefit from any given treatment, IMO. Since Chinese and other alternative treatments, although being used up to centuries previously, haven't yet done this, IMO this is why the discussion of "alternative" treatments (not complementary) is fraught. There is no way to know the factors, if any, contributing to which patient subset got benefit, if any, from an alternative treatment. And the problem IMO seems to be, when attempts to study alternative treatments have been done, any positive results are not readily reproducible. Being able to readily reproduce something is pretty much the basis of what we consider "scientific fact". You seem to think otherwise, but empirical verification is necessary when discussing things that are *objectively measured/assessed.* In medicine, in physics/bridge building, in many many things, we needs must follow empiric data to get the same results time after time.
I agree we "know" things that aren't empirically provable, but offhand I can't think of any outside of *subjectively measured* criteria. Hard science, house and bridge building, readily reproducible medical outcomes, all depend on empirically gathered data. So while people are free to *discuss* whatever, or have an opinion, if it's something that has not been able to be readily reproduced, it isn't allowed to promote it as a "better treatment" or even a "treatment". It's the difference between saying "IMO ivermectin helped me get through Covid faster" versus saying "ivermectin is always helpful in Covid, you are foolish to try anything else." The first is allowed, the latter isn't.
And like I said earlier, if there aren't a number of post on various alternative or complementary therapies, it's because us, the members, aren't posting about them. HU isn't a university dedicated to teaching, where one might criticize if certain thoughts and beliefs aren't discussed in the classroom as part of a comprehensive analysis and study of a certain body of knowledge. It's a bunch of people asking questions and talking about what we feel like. I was very interested in reading your experience at the spa, and if I ever have the opportunity I would try it too. But if it helped me, I wouldn't come and post "don't do the standard treatments, do this instead." I would do as you did, share an experience you had.
And if you choose to start a series of posts discussing what is known about various things other cultures and non-Western medical practitioners are doing, that will be interesting and I would welcome it. But please don't be upset at us if no one has been interested in starting the conversation on any of those topics.
I’m still reeling with the contention that I’m a ‘hardliner’. In the past I’ve tried acupuncture, reflexology, herbal supplements and managed to transform a diabetes diagnosis to under pre-diabetic levels for over 7 years without medication. However, whilst type 2 diabetes can lend itself to massively improved glucose control with moderated diet and exercise, absolutely nothing I did had the slightest impact on my CLL progression. It moved at its own pace until I was fortunate enough to be enrolled on a clinical trial for I&V.
Yes I’ve been left with pretty substantial fatigue and have the delightfully named co-morbidities to contend with on a daily basis. I suffer constant pain. It would be easier to feel bitter, robbed and rage against the world but for now I’m grateful my CLL is under control. I criticise no one for taking whatever measures they feel improves their lives, particularly in terms of quality but desperation can lead to desperate and untried, exploitative ‘alternatives’. If trying to warn fellow members against them makes me a ‘hardliner’ then I’m guilty as charged.
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