hi all a bit of a random question here I suppose
My mother in law has chronic leukaemia (diagnosed 5 years ago) and wanting to go the all natural route, what would be the prognosis with no treatment? I understand this might be a unclear question to answer, I am a medical professional and gently trying to guide her towards seeing a haematologist/specialist.
Hi Medi_c and welcome to our community. First off, does your mother in law have Chronic Lymphocytic Leukemia, as there are different types. Secondly, you haven't shared where you live, or your mother in law's age. Both affect treatment options and hence prognosis. Finally, do you have any idea of her prognostic markers? That she was diagnosed 5 years, means it is likely that she has good prognostic markers. She may never need treatment, depending on her age and markers.
Neil
Thanks Neil - sorry if it came across as vague, she is in her 60s (roughly mid 60s) and in Adelaide. She doesn’t talk about her diagnosis so I’m not sure I know she is only being monitored by her gp for blood tests. She does not want any treatment and only wants to do holistic treatments.
Ironically, I have been maintaining a list of the evidence for all the integrative, holistic, alternative, etc., treatments mentioned by members over the last 8 years or so, but the post was automatically banned by HealthUnlocked, because the content triggered their spam/misinformation detection system! I have a request in to restore the post.
It's also ironic, if you think about it, that CLL specialists around the world, even with the breakthrough switch from chemo treatments to kinder targeted therapies, still recommend being monitored until one or more recommended triggers for starting treatment are reached. See healthunlocked.com/cllsuppo... Yet those interested in holistic treatments, etc, are prepared to pay out for arguably unneeded treatments that are generally not reimbursed by Medicare or private health insurance! What's more, it's not unusual for those interested in holistic treatments, to complain about 'Big Pharma'!
Perhaps your Mother in law can be reassured to know that targeted therapies are available in Australia and are covered by Medicare and the PBS, so financial outlay is not likely to be a concern. Targeted therapies also are extending life expectancy, so that CLL specialists are now happy to advise that those with CLL are now likely to live out a normal life expectancy, providing people look after their general health (good diet, keeping physically fit, taking care to avoid infections, keeping up to date with vaccinations/boosters and so on. There's plenty of information in our pinned posts section on this; healthunlocked.com/cllsuppo... One major holistic trap to be aware of is that any immune boosting supplements should be avoided, because when you look into the the evidence for them, they invariably are shown to boost lymphocyte growth and activity - just what you don't want when you have CLL! The best evidence for what to do to slow CLL progression, is to keep fit; evidence that just keeps getting better the more research is done into this. See healthunlocked.com/cllsuppo... With regard to supplements in general, the quality of research isn't the best, as you can see from my analysis of the research (which was already disappointing) for turmeric See: healthunlocked.com/cllsuppo...
With respect to CLL expertise in Australia, the centre of excellence is in Melbourne, but Australian haematologists keep in touch and Adelaide has good expertise in the public health system. For example, Flinders Medical Centre has done some original CLL research as has been reported here previously.
If your Mother in law is particularly interested in some specific holistic approaches, please reply, listing them and I'll respond with whatever I have on record about them.
Neil
I’d love to hear of holistic therapies Neil. I’m in remission and had Venclexta and Rituxin. However, I’d like to do more. The fatigue is rough. I’m 67, unmutated with 13Q and otherwise good markers.
I'm sorry you are struggling with fatigue. For some of us, it can be the hardest part of living with CLL. Sadly, sometimes treatments don't help, or it can take some time - many months or longer to recover from them. I struggled badly with fatigue early on in my journey, but in my case, that was I think considerably due to my challenges fighting off illnesses, because I was so very neutropenic. I did find that if I absolutely didn't have to rest, just getting out for a walk helped. It's of course important to investigate other causes for fatigue besides CLL.
With respect to holistic medicine, regular medicine is supposed to take a holistic approach, but with the deep specialisation sometimes required, patient support can become frustratingly fragmented. Do keep pushing your PCP and specialist for help, because "Holistic medicine is another rebranding of alternative medicine. In this case, the words balance and holism are often used alongside complementary or integrative, claiming to take into fuller account the "whole" person, in contrast to the supposed reductionism of medicine."
and
"The alternative medicine sector is a highly profitable industry with a strong lobby,[1] and faces far less regulation over the use and marketing of unproven treatments. Complementary medicine (CM), complementary and alternative medicine (CAM), integrated medicine or integrative medicine (IM), and holistic medicine attempt to combine alternative practices with those of mainstream medicine. Traditional medicine practices become "alternative" when used outside their original settings and without proper scientific explanation and evidence. Alternative methods are often marketed as more "natural" or "holistic" than methods offered by medical science, that is sometimes derogatorily called "Big Pharma" by supporters of alternative medicine. Billions of dollars have been spent studying alternative medicine, with few or no positive results and many methods thoroughly disproven."
en.wikipedia.org/wiki/Alter...
Neil
Thanks Neil. I’ll work on it.
Just to add to Neil’s excellent and succinct response, if you read various responses on this site, you will see that a great number of contributors will have years, if not decades, of watch and wait and no treatment with cll. During that period, we have been told to watch our weight, exercise, eat healthy, practice hygiene and have meaningful social supports.
Given that a compromised immunity generally goes hand in hand with cll, the biggest risk to your mother-in-law, at least in the short term, might be that any “innocent” infection rapidly turns into something more serious and even deadly (septicaemia). At the very least, you should suggest prompt attention for any infection, no matter how small, and for any unexplained fevers.
If possible you might get her to share some of her test results eg. neutrophil count and IGG for an indication of the extent of her immune deficiency
Hello Med-c. I am not an expert on cll, but for having it for nine years ago and the reading I do.
I think the simplest answer to your question as to the prognosis for someone who has cll and does only natural treatments for cll is that they will die an early death from a very treatable cancer.
How long someone with untreated cll has to live is quite variable and largely dependent on the genetic variation of cll they have. Untreated cll can kill in a number of unpleasant ways. It can trigger dangerous autoimmune diseases such as hemolytic anemia, as it did with me. Cll can over time drop hemoglobin and platelets into dangerous areas. It can swell our spleens to the point of bursting and lymph nodes can get so large as to interfere with swallowing and such. Cll can degrade our immune systems to the point where we can get unusual infections that can be fatal. Even normal infections become more risky, Cll patients had some of the highest mortality rates with the original strain of covid.
There is a small percentage of people who never need cll treatment either because they were diagnosed at a very late age or had genetically indolent cll. And there are many people who will claim that green tea or pomegranates or a no meat diet or an all meat diet or fasting or whatever cured their cll. These stories are almost all anecdotal and unsupported by the science. Most all accomplished cll doctors recommend we eat healthy and exercise. I am not aware of any Cll doctor at a major cancer center who thinks natural remedies alone will stem the tide of advancing cll in any meaningful way.
The good news for your mother in law, aside from the fact that cll is very treatable for most people with very tolerable drugs, is that cll is typically slow growing. A delay in treating of just a few weeks or months can be a fatal decision with many types of cancer that can grow and spread quickly. With cll, we wait to treat. She can try her natural route and wait until cll symptoms force her to treat and hope she hasn’t waited too long. A lot of us know when its time to treat either from the relentless fatigue untreated cll can cause, drenching nights sweats and swollen nodes that can become quite painful despite some literature that says they are not.
Good luck with your mom. I hope she is one of the lucky ones who has a more indolent variety of cll who will not need to treat. I hope my answer did not come off as too harsh, I just cant really think of a gentle way to tell someone that untreated cll can lead to an uncomfortable and unnecessary early demise.
What do you feel her underlying reasons may be? It is one thing to say she wants to be holistically healed and wants the natural way. Look for what may be what she doesn't want to say, I'm afraid of. . . spending months in hospital, . . . losing my hair, . . .vomiting, etc.
If she thinks doing something is going to make it happen, make it real, she's dealing with fear of the unknown. Does she want certain thing that are a part of her life style that she doesn't want to keep being reminded about, smoking, weight loss?
If she really wants a holistic approach, she should start with her emotions and thoughts, it will take as much energy despite the manner of treatment, the patient's attitude is the largest ingredient in a successful outcome.
😌
Wouldn’t it be wonderful if indeed there was a natural cure for CLL. I totally empathise with your mother- in-law on this. Unfortunately though up until now there has not been any such cure found and it is unlikely it will be in our time.
In the meantime I live in hope as I watch and wait that I might be in the 30% who may never need treatment and that I will die with CLL rather than of it. I have stepped down from letting it rule my life to ‘living life to the fullest’
I live in New Zealand where first line treatment is still chemotherapy and I have been advocating for the same equal access here to drugs as there is in Australia and other developed countries. I have given up on that and just want to get on with life. I guess my advice to your mother-in-law is to live the best life she can, eat a balanced diet, exercise and try to forget that she has CLL ( easier said than done!)
Medi_c, you've had some further helpful responses. Spark_Plug 's reply reminded me that we have occasionally had a few very concerned posts from members or those who care for people like your mother in law, who have witnessed very bad treatment experiences by people close to them for other cancers. Even before the advent of targeted therapies, chemoimmunotherapy treatment options for CLL were thankfully generally not in the same league as other cancer treatments. Losing your hair (understandably of more concern for women than men), doesn't happen, though some do experience temporary hair thinning. Nowadays, many are able to take one of the growing number of approved 'brutinibs', the BTKi targeted therapy drugs that started the treatment revolution, to keep their CLL in check with negligible or with quite tolerable minor side effects. The more recently approved BTKi drugs acalabrutinib, pirtobrutinib and zanubrutinib have a considerably lower side effect profile than ibrutinib, which ushered in the treatment revolution. Because those who are doing well on treatment have no reason to post, asking for advice, reading our community postings, is misleading in regard to how tolerable modern treatments are for most of us.
Neil
To keep it short, an infection or organ failure would kill a patient with untreated chronic lymphocytic leukemia. To get to that point would be no fun towards the end. Given the available treatment options in Australia, I'd think twice about what she wants to do if I was her.
I think the OP, being a medical professional knows this. I doubt the blunt direct approach will move their relative.
It has been said, that tact is the ability to step on another's toes without disturbing the shine on their shoes, it seems that persuasion is the better tool for the job.
Until the OP has discovered the obstacle clearly, they cannot assist their relative to see that active surveillance is a reasonable step if treatment does become an issue.
Ultimately, it will still be up to the patient regardless, take that away and what drive will they have to live anyway?🤔
Yes, one can mull over it day in day out, weighing all kinds of aspects. But the question was specific, so was my answer 😁.
I didn’t find offence at all! To be honest I think their tactic of going all natural (looking at treatment centres in Mexico) a bit selfish and ignorant. Particularly when after doing simple research I can see that CLL is treatable when caught early. I’m just gathering information for when I can gently talk to my partner but ultimately it’s up to my MIL.
I was diagnosed in 2001. Luckily my blood numbers were only slightly raised and it was 9 years until I needed treatment. Scans showed my spleen and internal lymphnodes were enlarged.I think the emphasis is to say how lucky we are that the treatments are so effective and many just require taking a tablet or 2. She will be able to carry on with her everyday life.
I had chemo in 2010 with a drug called Rituximab added. Before then my life would have been shortened.
I have since had a drug called Ibrutinib and I am in remission.
My Dad died in 1968 aged 45. That is the answer to the question. He had pneumonia and pleurosy and for 3 years was ill. He had boils under his arms and fell asleep continually.
There werent treatments and he had continual blood transfusions.
Many people have their heads turned by different treatments because they are scared.
We are so lucky that there are treatments and very clever scientists are working to find a cure. Your Mother in law probably has a different impression of being treated.
She may not need treating yet. Maybe your partner can find out what stage she is at.
Anne uk
Everybody's CLL presents differently and nobody's CLL takes the same course. It's not possible to say, this will happen, and then this and then you die like this.
30% never need treatment.
80% die with CLL rather than from CLL.
There are absolutely no holistic approaches with proven effect. Vitamin D is important. Supplements, Green Tea, Curcumin, whatever, the amount that has to be used to approach a therapeutic dose is toxic. Curcumin they have been trying intravenous but that's obviously no longer holistic. One patent for Curcumin had an one hour IV, 5 days a week protocol. I'm guessing it would have been 7 days a week but the clinic was shut at weekends. Think I would prefer the medical approach of a half a dozen tablets a day with breakfast.
So ways to die.
For the 80% that die with CLL it will be any of the other ways people die (including other cancers) plus infections that take hold and fail to respond to treatment due to reduced immune system.
For the 20% that die from CLL. CLL is a proliferation of B-cells that take up residence in proliferation centres, spleen, liver, kidneys, marrow and lymph nodes. The spleen can rupture. Liver or kidney function can be damaged. Or lymph nodes cause problems pressing on vital organs, obstructing airways, GI tract and circulation system. The marrow will start to fail as the B-cells crowd out the production of normal blood cells. That can result in three main effects, low red blood cells - anaemia, low platelets - IPT resulting in haemorrhage, or low neutrophils - neutropenia and sepsis.
There has been a massive change in the treatment landscape since your mum in law was diagnosed. Five years ago most counties with Universal Health Systems only allowed the very high risk with TP53 aberrations to have targeted therapies. Everyone else got chemotherapy. Short duration targeted therapy treatments of more or less than a year are now generally available. Targeted therapies are not chemotherapy. Swallowing a pill of proven targeted therapy is little different to swallowing a pill of any unproven supplement. About 50% go though treatment with no side effects at all.
Medi_c, two decades ago when i was first diagnosed i found some epidemiological research on CLL life expectancy in the days before decent treatments were available. The data show that life expectancy depends on diagnosis--bad markers usually lead to bad outcomes.
As you can see, the data were from an article in the New England Journal of Medicine in 2000, showing the range of outcomes based on what was available over the prior decades. I extracted the data for a 2018 article on the CLL Society web site about my frightened reaction to my diagnosis (11q, unmutated, complex karyotype).
Thank you kindly
I understand her position completely because I used to be of the same mind. A bad case of AIHA and becoming more educated about CLL (through this forum) changed my mind. My previous decision to reject any necessary treatment was based on my distrust of conventional medicine and the fear of traditional chemo (which as has been mentioned is not used often). I am guessing your MIL may have similar feelings. Another negative influence was having my watch & wait blood tests done in a local hospital with a general hemo/oncologist. Seeing other patients looking so sick with other cancers is not a good advertisement. So, step one is seeing if you can convince her to have a consult with a CLL specialist. Another influence for me in accepting treatment was seeing my brother’s lack of success in avoiding treatment for his prostate cancer. It spread to his bones and killed him within two years. I just lost him this past February. The last year was not pretty. Ultimately, my choice to accept treatment was easy. My hemoglobin was tanking, the blood transfusion did not work — so it was rituximab or death. I chose life in October 2023, and my fears were wrong. The treatment of 4 infusions was very tolerable.As of December 23, 2024, all my CBC numbers were finally normal. Praise, Jesus. I still have the AIHA but am stable. Two more points — God — I realized rejecting treatment would be a form of suicide, which I would not do. Lastly, as I have learned from this forum, the CLL patient has a lot of empowerment as to the selection and timing of treatment. Lack of choice equals fear, but that is not the case with CLL. PS — at diagnosis, my brother ran off to an alternative treatment center in AZ. He later regretted it.
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