Hello All,
Update on my mom's case. It has been 2 weeks since the doctor prescribed her the treatment, her lymph nodes are growing by the hour and she lost her energy in the past 2 days. So I decided we cannot wait anymore for the program and went and paid for the first batch of Acalabrutinib.
However it is not available and it will take 2-3 extra days to arrive. She is in lots of pain and the lymph nodes are tender and painful. Is there anything that helped you with the lymph nodes?
sorry you’re going through this, I have swollen nodes in my neck, and I’ve noticed improvement after physical activity like a long walk. If that’s not an option, a steam shower or sauna might temporarily relieve some symptoms.
My swollen lymph nodes went away gradually when I adopted an anticancer diet (described in Paul Pitchford's book Healing with Whole Foods) and drank fresh carrot and vegetable juices and drank 5 cups of sencha green tea in the morning and had food with turmeric in the evening or took curcumin tablets (not a huge dose). There is a scientific basis for why the green tea and curcumin taken at different times helps kill the lymphocytes that accumulate in the lymph nodes. I had a poor prognosis back in 2008 but am still W and W, though I have had my infections and other battles.... I wish your mother luck! And you! Caregiving is a big deal, bless you.
ncbi.nlm.nih.gov/pmc/articl...
indeed she was on a green tea and curcumin supplements + healthy diet for almost 5 years and she was doing great, but suddenly she worsen in the past few months
Mdsp7, I too took EGCG and turmeric and in large doses, guided by the paper you referenced along with other papers. I took EGCG in the morning, alternating with turmeric in the evening. Good to hear you are still in watch and wait.
The paper you referenced, after discussing in vitro, not human trials, states "... several groups are working on altering curcumin to increase its absorption when taken orally (4,5,9,13). Based on the biologic properties of curcumin alone or in combination with EGCG or other compounds, these second generation curcumin moieties should be explored for the treatment of CLL and other cancers." This post of mine examines the resulting disappointing research into a "second generation curcumin moiety" in a human clinical trial. healthunlocked.com/cllsuppo...
Given that the paper you referenced states "Sufficiently high doses of EGCG and of circulating curcumin will be necessary to overcome stromal protection in vivo.", from the disappointing results of the turmeric trial on people with CLL outlined in my post, it seems that it's either not possible to get a high enough serum concentration of curcumin, or stromal protection is too effective.
Paula, see if your mother can get some relief from using heat packs on her swollen nodes, perhaps alternating with cool packs. There was some discussion ages ago in one CLL support community about using castor oil soaked heated wheat bags I think, but it's probably the heat and cool that encourages extra blood circulation that can help reduce discomfort
Neil
I guess I had read Paul Pitchford's book prior to having gotten sick, so I was naturally somewhat concerned about possible toxic effects of large doses of supplements, and have stuck with smaller doses. These powerful molecules have many effects so I try for dosage ranges present in normal foods, and have just kept at it. It took me awhile but I did get a lot better. I still drink the green tea and put turmeric in my food. No way of knowing, of course, whether these are the changes that have kept me fairly well, but they are the two things that I am disciplined about, even on days when I eat pizza.
I wish everyone luck finding the right path for themselves.
Wish I would have thought of alternating the heat and cold when my nodes were so big and uncomfortable Recently discovered alternating 3 min of ice and 30 seconds of heat completely took away my VERY painful Sinuses Could work for nodes No wonder my maneuver to get in my infrared sauna for an hour with castor oil packs was a failure
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So very interesting to know. I will definitely try these. I am fit and we'll and bloods are all normal but the lymph nodes in my neck are growing. My consultant is going to order a PET scan and may start Rituximab and venetoclax. I was diagnosed in 2018 and had FCR in 2019. I have felt fine since. X
I too am so sorry to hear this about your Mom. I am a 13yr CLL Leukemia Survivor who has received no conventional treatments as of yet. I reached stage IV 2yrs ago based on my left mid abdominal pain. I detox my body because the lymph nodes become inflammed with infection. Lemon Water 32oz daily, 16-32 oz of cold pressed juice (both room temp) & hot herbal tea with Moringa or Spirilina. I stay away from people because I was stable until 2020 & I blame Covid. I ate an organic plantbased wholefood (no meat, fish or dairy) diet that I cooked in a Dehydrator at 115 degrees to keep all the enzymes & nutrients in the food. I witnessed the lymph nodes & general edema/inflammation decrease because I could not eat ‘regular food’ because the abdominal inflammation acted like an obstruction. I also take herbs that improve your immune system & detox your body in general. Gargling with hot salty water, as hot as you can take it plus steam Inhalation with peppermint or eucalyptus oils. Oregano Oil kills but must be used with caution because its so strong #GODSPEED on getting the medicine & it working to relieve her pain🙏🏾🙏🏾🙏🏾
I admire your disciplined and wise approach to healing yourself! Do you have any books you recommend?
Robert Lustig MD: METABOLICAL
Did she take the green tea and curcumin staggered or at the same time? I'm glad she has had 5 good years and hope she has many more!
She was taking them on alternative days, 3 days 1500mg ECGC per day followed by 2 days curcumin. In addition to cell renewal supplements from Life Extension. However her kidneys now are not functioning properly and I am really worried that it is not due to the long period of these supplements. Her doctor says it is the CLL affecting all organs and we should reevaluate once she starts Acalabrutinib and her numbers come down.
I have no experience with the ECGC supplement, I just drank green tea in the morning which I bought from Japan and brewed for 10 minutes in slightly cooler water. I usually just cook with turmeric but when I don't have it in my dinner I take a small dose before bed, not very much. And not every day.
The Paul Pitchford book will give dietary suggestions for helping kidneys recover, depending on the different constitutions. It deals with all the organ systems and how they lean on one another. It also addresses different constitutions, for example, a weak, often cold person needs certain foods, a more robust person does better with other foods. I think the book is, while a little weird sometimes, also brilliant, and is really worth the money and time invested in reading through it. Some of it seems a little out there, but there is a lot in it which is extremely helpful.
Don't give up!
They prescribed steroids for me. They helped very quickly.
We were also told, if you have access to a sauna, the sweating drains the lymphatic system of toxins.
Before my doctor put me on Acalabrutinib, she had me on obinutuzumab (Gazyva) for 4 months. It worked wonders. It is not a pill though and the first treatment was brutal. After that it was smooth sailing and definitely worth the discomfort.
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