No treatment or cure the doctor said. Just watch and wait. Uh huh, just trees are born to watch and wait I thought. Found the only doctor brave enough to do Linus Pauling IV Vitamin C therapy. 3 months and 23 sessions later new blood tests indicated WBC dropped 28%. As Neil has said in his wisdom the cancer cells can be anywhere and many other measurements- CT Scans and bone marrow biopsy need to be taken. I dread the idea of the biopsy. I hear it can be painful.
So 28% reduction WBC and then symptoms appeared and got worse, mainly sweating and unbelievably relentless energyless fatigue. Haven't been able to work for 6 months and my social security from the richest country in the world is $318 month. I am 73 now. Was a professor of psychology but quit everything 25 years ago and went to a wild and wooly ashram in Pune, India.
Checking alternative treatments - IV C, Green Tea, Iscadore mistletoe, and medical cannabis. Especially interested in hearing from anyone who has done any of these, particularly medical cannabis, which seems to have 600 medical applications and a strong history in cancer treatment.
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I appreciated you trying everything natural. I am trying anything I read that will help me. While I prayed this morning a thought passed thru my mind why are there not more natural clinical trials. I am in Wait and Watch and I hear about all the side effects from these drugs and my heart goes out to all the people having to be in treatment,
Despite numerous studies, the benefits of Vitamin C espoused by Linus Pauling seem very hard to replicate, which makes me suspect that if they are real, it is only under very specific circumstances and offhand I'm not aware of any Iscadore mistletoe/CLL studies. Do you know of any references?
When it comes to medical cannabis, don't confuse the number of words on the topic with actual (rather than anecdotally claimed) benefits! If you haven't already done so, read healthunlocked.com/cllsuppo... and the included references/links.
Unfortunately as you have found from personal experience, WBC or more accurately ALC - which better measures your B-lymphocyte tumour burden in your peripheral blood, doesn't correlate with symptoms, which doesn't help when it comes to getting understanding/sympathy from the medical fraternity .
A good starting point for alternative treatments is the paper Maintenance Therapy for B-Chronic Lymphocytic Leukemia by Susan O’Brien, MD, and Neil E. Kay, MD, both highly regarded CLL specialists. ncbi.nlm.nih.gov/pubmed/213...
Green tea/EGCG gets a significant mention (unsurprising, since Dr Kay was involved in the Mayo Clinic green tea (Polyphenol E) trial), but there's no mention of vitamin C or mistletoe, .
I'm sure we have all had the experience with regard to complementary/alternative medicine suggestions along the line of "I got the reference from a Swiss friend whose father used it for his cancer."
I'd want to know a few facts regarding such tips before investigating them more seriously:
1) Did the patient have CLL/SLL or was it another blood cancer or even a solid cancer? CLL/SLL is rare, and such references are nearly always for some other cancer. Even if it is another blood cancer, successful treatments vary by blood cancer - and even within CLL, vary depending on the genetic damage causing the CLL.
2) Was there an actual improvement in the patient's measurable symptoms - e.g. did they drop back a stage or more or was there a measurable improvement in blood counts, lymph node sizes, bone marrow infiltration and so on? Even that can happen for other reasons than because a patient was taking a supplement. The patient feeling better or surviving longer than anticipated don't really cut it in my opinion.
NCI provides an excellent repository of information - but you have to check that it is current. The reference you provided is good and reasonably current (last updated a year ago) but I've read enough for me to discount Iscador/mistletoe as worthy of my further investigation for these reasons:
1) From Point 3 of the PDQ, "there is limited evidence that mistletoe's effects on the immune system help the body fight cancer"
2) From Question 2 part 2 "Extracts of mistletoe have been shown to kill cancer cells in the laboratory and to boost the immune system"
Huge warning signs there!
a) CLL cells are fragile - they die easily in the blood and practically anything can kill them outside the body (in vitro). A tell tale sign of CLL is the appearance of smudge cells in the blood slide (i.e. ruptured CLL cells - because CLL cell walls are fragile). Killing CLL cells in lymph nodes and bone marrow where they protect themselves is beyond some approved CLL treatments - hence the poor response rates reported for some patients even on the latest drugs!
b) Unless we know exactly how the immune system is boosted by a substance, we should steer well away from anything which claims to do that. We may well be boosting the growth of B-lymphocyte CLL cells, because lymphocytes are part of our immune system.
c) From Question 2 part 3, "Mistletoe extract is studied as a possible anticancer agent because it has been shown to -> Protect the DNA in white blood cells in the laboratory, including cells that have been exposed to DNA-damaging chemotherapy drugs.'
Protecting the DNA of white blood cells (remember CLL cells are white blood cells) is the last thing you want to do if you want to kill CLL cells! Chemotherapy works by damaging the cancer cell's DNA, triggering the cell's apoptosis mechanism, so taking this mistletoe extract while on chemotherapy could negate the effects of the chemotherapy! And if you aren't on traditional treatment, surely you'd want something that is more likely to damage the DNA of CLL cells and hence kill them?
3) There are no current clinical trials listed by NCI.
I would appreciate hearing what you know about bone marrow biopsy. I understand it is not necessary for confirmation of diagnosis anymore since the use of flow cytometry (sp?)
It seems to be useful only if a person is going to have chemotherapy to track the effect of treatment. It can also track speed of progression and how bad it is.
If a person chooses not to do the chemo, then what would be the use of a more detailed diagnosis?
I have heard there are reliability problems in that one part of the bone will give different results than other parts of the bone.
I would really really appreciate your sharing on this and from anyone else who has an opinion about the necessity and usefulness of BMB.
If reading these doesn't answer your questions, I suggest you ask them in a new post.
I'd say that in summary, BMB's are rarely needed unless required as the condition of a trial or if there is insufficient/conflicting information from other tests. They do have the advantage of telling your specialist exactly what's happening with your CLL, as peripheral blood tests are a proxy measurement for what's happening in your marrow. They can be advantageous to have at the end of chemotherapy treatment and provide you with an accurate measure of how well your treatment has cleared your bone marrow and hence an indication of how long your remission may last - or you can wait and find out!
If done well/by an experienced operator, they aren't a painful procedure, (and some centres do them when you are mildly anaesthetised) but occasionally you can have a bad experience.
I have CLL was diagnosed in 2010 still in W&W stage. But I work where they do bone marrow biopsies. Usually done on right hip doctor freezes the skin over the hip the biopsy is done the patient lays with a rolled towel on that hip for 15 minutes then they go. Very minimal pain for the patients, usually the freezing is the worst. We tell them they can take ibuprofen or Tylenol when they get home. I check with the patients because this will be me one day.
I have been taking low dose naltrexone 4.5 mg since diagnoses and my blood work is still half what my original diagnoses was!
Hi shec8. Great news re. your counts! Have all your CBC counts (e.g. platelets) remained stable since starting low dose naltrexone? Any side-effects? Thanks.
Just a note to let you know the fear of a bone marrow biopsy was much worse than the actual procedure. Mine went well and was worth doing in finding more about my particular diagnosis. I hope your doctor is a CLL specialist.
If you went to India for 25 years then you must not have paid into Social Security for very long. I hope you have other investments to help you. I'm glad you have found this forum. So many brilliant and kind people to help with our journey. I've learned so much in a short time. Best of luck.
Watch and Wait may not be fun but is a place some people might be for decades. The truth is e eyery human being is on watch an wait, we will all eventually die it's just how and when not if. Watch and wait to me is an eye opener to enjoy every moment and live each day as you stole it. I though of the natural cures but you don't know what make something worse. The safest bet is to eat healthy and avoid alcohol and make sure you excercise. Watch and wait is the best place to be and I'll be happy to spend another few decades here if I can.
I'm taking CBD oil, which is without THC. I will take the oil with THC as I understand it works better. It became leagle last week here in PA. I am new to CLL, only known I have had it for 7 months, Neil on here says pay more attentenion to ALC then WBC.
I take Turmeric with the CBD and black pepper you need to take them together to get the best results . B17, Baking soda and honey, ginger and garlic tea, Hydrangea root + rosehips+ selenium, vit A,E,C. Cod liver oil, castor oil and krill oil. I use Japanese knotwood honey as it has cancer fighting properties in it. I take milk thistle, dandelion and yelow dock to help the liver. Two teaspoons applecider vinegar. I also do thyroid message, and I bounce 15 min a day to promote the lymph system to work. I also change my diet, job, stress level..I started chi gong and I am looking into something called grounding. I juice apples, celery, carrots and red beets everyday. I add what ever I want beside those 4, but must have those 4 in it. Many of these combinations of things I take has results of fighting cancer, so many websites say, and people giving their story. But I like the saying "CLL is like a fire, it takes many firetrucks to fight the fire".
I AM NOT TELLING ANYONE TO TRY ANY OF THIS STUFF, I AM SAYING WHAT I CHOOSE TO DO.
You can look at my blood results in my past post..
I too will be happy to stay in watch and wonder ( wait) as long as I can. I can tell the difference in my engery level when i miss my juice for the day..lol
I get blood test done reg to check on my levels of the extra vitamins I take.. so far so good.
There are no trials on herbal treatments becasue pharmaceutical companies pay for trials of their drug so they can make money..herbs can't bring in the kind of money durgs do. But buying supplements is tricky, they are not all good products, you have to really investagate the ingredients of the product and the integrity of the brand..
THIS IS MY VEIW ON TRIALS, I NOT TRYING TO CONVINCE ANYONE OF ANYTHING
BMB for me was no problem. Some have the light sedation, but I don't.
Am newish to CLL , and my plan is healthy eating, staying hydrated with water, getting exercise and adding nothing in terms of supplements beyond multivitamin. My reasoning is that watch and wait CLL looks for patterns and trends and changes and I don't want to complicate matters by experimenting with unknowns/unprovens. I can't expect my CLL specialist, as brilliant as he is, to evaluate me long term if I am all over the place trying to heal myself with alternatives, so I can better help myself and him with consistency. Just my decision. I can see how you might lean toward alternatives having spent so much time in India.
I totally understand what you are going through. I too thought the same way, alternative treatments would be able to help cure my CLL. I could not just sit around and "watch & wait", there must be a way to nutritionally build up my body to offset the cancer. Weekly 50 gram Vitamin C drips, laetrile, alpha lipoic acid, enzymes, more and more supplements. I followed a strict protocol. Third year after diagnosis, despite the nutrition, I needed monthly then bi-weekly packed red blood cell transfusions, 2 platelet transfusions, and 2 hospital stays. I endured this for a little under 2 years. I was convinced that the treatment would work and one day I would wake up and be fine. Totally not the case for me anyway, and that is all I can speak from, my own experience.
I was also going to an Oncologist/ Hemotologist, who was extremely patient with me, thank goodness, as most doctors would push a conventional treatment or show me the door. I needed her, as she was affiliated with the hospital where I got my blood transfusions. Notably, I was referred to her by my alternative doctor, who also told me at my first visit with him, that I start conventional treatment along with the alternative. And if not, to promise him that I would seek a conventional treatment, at very least when I needed monthly blood transfusions. I was baffled at that point, the thought of a transfusion was the last thing I ever thought I would need. I was still in W&W, I felt fine. He knew I was totally against conventional treatment, actually I was very fearful of it, since I recently lost a few of my close relatives from cancer and I blamed it on the conventional treatments. When I explained that was the reason to my oncologist, she told me their cancers were very different than CLL, and they were all diagnosed at a very late stage. I knew she was well meaning, but I was still very reluctant, and stalled her for a few more months, while enduring more transfusions. Every visit, she shook her head and told me what I was doing was not enough, and to please consider the treatment. She suggested Bendamustine Rituxamab, and she would start me on a proper dose at first because I was very thin (I think she really meant very sick). I then let her do a bone biopsy (really only to keep her as my doctor), I was so stubborn. The results came back with my bone marrow being 85% packed with the leukemia. I still thought the protocol I was on should help miraculously cure the CLL. It was only when the alternative doctor called me when I was in the hospital and told me he was afraid I may die if I didn't start the conventional treatment. I promised him I would start as soon as possible. Spoke with my oncologist and made the decision to begin the BR the next week.
Fearful as I was, the treatment wasn't as horrible as I anticipated it would be. Thankfully, I have a most caring, knowledgeable oncologist. I can't say enough kind words about her. She patiently waited until I was ready, and promised me, I would not die. Yes, I was that afraid. She gave me the right doses of pre-meds, so I didn't get sick at all. I drank gallons of water to flush the dead chemo cells out of my body. I finished the treatment on February 4th & 5th. 6 rounds of treatment for 2 days every 28 days. I now feel great. I've gained healthy weight back, and have regained my strength. There was a time when I could not walk up the stairs without my heart pounding, I was so anemic, I had no energy, except for a few days after a blood transfusion. That is no way to live. I didn't realize how sick I was until now that I'm better. I'm grateful to my oncologist for the patience and compassion she showed to me, while I was being so stubborn. I am also grateful to the alternative doctor who told me to take the conventional treatment as what we were doing, just wasn't enough. They actually worked together for me. I do feel the Vitamin C drips may have helped me with the BR, however, I don't know, I can't prove that. I still get weekly drips, which I still believe keeps me healthy, however, I can't prove that either. I hope my CLL never comes back. I continue to see my oncologist for follow up blood work and will always trust her. If it should come back, I will not hesitate to undergo another treatment under her direction.
If I have any advice to offer, if you choose to go the alternative route, so be it. However, please don't discount the healing power of conventional medicine, it truly does save lives.
That is briefly my story.
best wishes for good health & happiness,
carol_h
PS. I believe the bone marrow biopsy helps the doctor know which medicines will work for the type of CLL you have and also to see how far the CLL has infiltrated the body.
Carol, thanks for sharing your experiences with both alternative and conventional medicine. Sadly many people unnecessarily suffer and die (arguably including Steve Jobs, co-founder of Apple), by totally refusing conventional medicine or leaving it too late, trusting in alternative medicine to restore their health. You were most fortunate to have an alternative medicine practitioner that could see the benefits of both alternative and conventional medicine and put your best interests foremost.
For those interested, here are a couple of articles explaining why Steve Jobs may have survived if he hadn't put off the conventional medical approach until it was too late:
Hi carol thank you so much for sharing this with us, I’ve just been diagnosed with cll about 2 month ago , I’m so scared about it all, the main word cancer scares us all, I really don’t know what to exspect , again I’m scared out of my mind, I served queen and country and got through that fine, but to have something running through my blood I carnt fight is so scary, I have been taking cannabis oil every night before bed, my son got it me cause he said it will help , he hopes , and me and everyone else, I know cannabis helps most cancers, do you know from your experience if it does or if you have heard , I’m a bit scared of it all so I’m trying everything early , many thanks Paul
I had a bone marrow biopsy about a month ago. It was much worse in my head than in actuality. Uncomfortable but really not bad. RE alternative treatments, I have not done research on it but have been told that Essiac has had positive results with cancer, not sure if CLL would be affected. Best of luck
Given high dose green tea has been shown in a clinical trial to reduce node size and lymphocyte counts for most taking it, another tea product I hadn't heard of took my interest. From Wikipedia: "Essiac's purported effect on cancer has been reviewed by several major medical and scientific bodies, including the U.S. Food and Drug Administration (FDA),[7] the National Cancer Institute,[4] and the American Cancer Society.[2] The American Cancer Society states that "Reviews of medical records of people who have been treated with Essiac do not support claims that this product helps people with cancer live longer or that it relieves their symptoms."[2] The NCI states "Essiac and Flor Essence have not reported clear evidence of an anticancer effect",[4] and the FDA described Essiac as a "Fake Cancer 'Cure' Consumers Should Avoid".[7] Researchers at Memorial Sloan-Kettering Cancer Center have written that Essiac continues to be a popular cancer therapy despite unsubstantiated claims of its effectiveness.[8]" : en.wikipedia.org/wiki/Essiac
and Cancer Research UK: cancerresearchuk.org/about-... also notes that there is "no scientific evidence that Essiac can help to treat cancer or control its symptoms" and cautions that "Essiac may interact with some types of cancer treatment so it is very important to tell your doctor if you are thinking of taking Essiac."[5]
Note also from the above reference that: "Essiac is not recommended for people with kidney or liver problems. This is because the plants in Essiac contain chemicals called oxalates which can damage the liver and kidneys."
So sadly, another commercial product giving false hope...
Interesting, thanks for taking the time to look it up. Someone had mentioned it to me and did say if you were in treatment you should not take it so I didn’t bother to look at it.
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