Has anyone been troubled with dehydration with CLL?
My CLL was diagnosed in July as result of hospital admission for acute sigmoidal diverticulitis (never had this before). I am on W&W, my ALC was 20 from what I remember during that acute illness. RBC's, platelets and Hgb all preserved. Since that time, I have changed my diet, eliminated sugar and switched to a mainly plant based diet with salmon and chicken, eggs and cheese added in as well. I have lost 12 pounds following the diverticulitis and diet changes ....my BMI is healthy at 22, was closer to 25 before all this. I have been very mindful to drink plenty of fluids everyday - mainly a combination of water, water with lemon and green tea at times, rare carbonated sugar free water and 1 cup of coffee in the morning - easily 2-3 liters per day. I take turmeric 1000 mg 1-2 times per day, EGCG once daily, vit D 5000 units, Vit c 1000 mg. I am on no daily medications.
Prior to this week, I was feeling great and walking 4-6 miles per day. This week I have noticed a dull headache and feeling very dry - mucus membranes dry, BP low and I currently have UTI symptoms like burning, frequency, urgency. I tried to treat with cranberry juice and increased water - but symptoms remain. My Doc just called in a prescription for Bactrim DS (antibiotic) which I have yet to start.
When ill in July, I was treated for the diverticulitis with IV fluids and antibiotics and it took several weeks for the inflammation to settle down. I am scheduled for follow up colonoscopy. CT scan identified lymphadenopathy and mild splenomegaly. I had an oncology consultation in the hospital (not my usual hospital -I was on vacation) and a flow cytometry was done identifying a chronic B cell proliferative lymphoma/leukemia. When I returned home, I had a video consultation with an oncologist at the University of Michigan who confirmed a diagnosis of SLL/CLL but no physical exam or any other prognostic genetic markers done. I was staged at Rai II. Her plan is to do PET/CT and repeat labs (3 months from previous labs) including Flow cytometry, as my flow in July revealed that I am CD 5 and CD 10 negative.....so she is trying to confirm either atypical CLL or a different low grade lymphoma. I really feel like something is being missed......and I am not thinking waiting another month is the best idea. All these questions that remain unanswered drive a lot of anxiety. Any insight into this situation would be greatly appreciated.
Sorry for the long story.
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peacethruthestorm
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peacethruthestorm, the following is an overview of dehydration symptoms that might help you sort out what is happening.
Note the urine color can help you determine if you are dehydrated and some medicines OTC or prescribed can be culprits. Also coffee and tea and alcohol can work can not be counted on to help with hydration.
Hi, I am sorry you have had this shocking diagnosis. This is a chronic leukaemia and there is no need to panic. Fortunately the majority of us are told that they will be monitored. Its called watch and wait or as many call it watch and worry.
It will be a long time before you need to be treated. There will be others on this forum who can explain blood numbers better than I can.
I have had cll for 20 years. I am being treated with a tablet that I take once a day. Treatments have changed dramatically in the last 10 years and if and when you need treatment it will be even better. There may be a cure.
You have made big changes to your diet and are doing a lot of excercise. Is it possible that you are cutting calories and sugars too low? You may need advice on how to keep your energy levels up and the headache may be because of this. You were feeling good before and just a tweak to your diet may be all you needed.
Over time you will learn more about cll but please dont panic. I was only 43 when diagnosed and I am coming up to 64 now. When this has sunk in you will be able to get on with life.
You are being looked after. There is no rush. Wishing you well, Anne uk
I noticed your mention: "I take turmeric 1000 mg 1-2 times per day, EGCG once daily" and would suggest you try pausing that for a few days. Those drugs can have some strong side effects. Also, I believe some people take them on alternating days. AussieNeil may want to contribute some comments about this.
I'm puzzled by your symptoms and wonder if a metabolic panel blood test would offer some clues, maybe with a CRP test to check for infection/inflammation? With respect to cranberry juice and UTIs, evidence of its effectiveness has become less certain in the past decade. Have you started your antibiotics course yet?
You are taking a very high dose of vitamin D. Do you really need that high a dose to achieve an acceptable blood serum level? You would get some sunlight produced vitamin D on your runs. The evidence for vitamin C and CLL is uncertain, with some evidence that it could be a lymphocyte stimulant. I appreciate you don't yet have a confirmed diagnosis
I took green tea (for EGCG) and turmeric for over 10 years, based on, then modified according to the best available information. That was the phase I and II Polyphenon-E Mayo Clinic trials and various in vitro studies, where the effect on CLL cells sourced from blood samples are studied. Until the relatively recent Australian turmeric trial on 21 CLL subjects, there were no human in vivo trials of the effect of turmeric, just in vitro testing. Per this paper pubmed.ncbi.nlm.nih.gov/192... taking green tea and turmeric at the same time lessens their effectiveness and they should be taken sequentially.
Then came this interesting Australian in vivo study of specially formulated turmeric for high absorption, where I would argue that even the disappointingly low response rate from taking turmeric is an artefact of the study methodology.
healthunlocked.com/cllsuppo... If turmeric has any effect at all on CLL in human subjects, it will probably be if it is taken sequentially with EGCG, which hasn't properly been assessed in human subjects.
Inadequate regulation of herbal remedies in most countries resulted in Dr Neil Kay, one of the principal authors of the Mayo Clinic EGCG/polyphenon-E study reports, to advise us against taking EGCG "because we don't know what's in it". Then, more recently, we have this paper from Dr Anthony Mato
clinical-lymphoma-myeloma-l... which concluded that there was no benefit. That surprised me, as I consider that EGCG had the best evidence for a herbal remedy for CLL. Unfortunately, the trialled compound was a pharmaceutical grade extract provided to the trial participants by Mitsui Nori, who subsequently abandoned oral Polyphenon-E research, concentrating on a topical cream application for genital warts, for which they achieved FDA approval. So sadly we have no long term EGCG data from what was a relatively small clinical trial.
Like you, I also concentrated on my physical fitness. There's a huge amount of excellent evidence for physical fitness resulting in better outcomes with cancer.
I hope this insight encouraged by Len/ lankisterguy helps you. Please keep us updated.
I didn't have my level drawn or look at calcium level, but my symptoms seem to correlate with too much Vit D. I've never taken it before and honestly don't know what my level is. I'm outside a lot, so this dose is probably too much. It was recommended as a way to prevent getting covid, so I started taking after my diagnosis in July. I'm going to stop it immediately. Thank you for bringing my dose to my attention. I know many people take a lot more than I, but I think 5000 is too much for me. Says symptoms should resolve within 1-4 weeks probably in direct correlation to how much toxicity has occurred.
Thank you for your thoughtful response. I just started the antibiotic so hope to have some resolution soon for the urinary symptoms. I've only been taking the supplements for the past month after receiving the diagnosis and researching a bit about CLL. I will consider your comments on the Vit D dosage, maybe not take it every day. I spent my entire career in Cardiology, so blood cancers are not in my area of expertise. Would have preferred to leave it that way given the choice.
So you stopped taking the turmeric and EGCG after Mato's paper?
Per my disclosure statement, I stopped taking turmeric after learning of the Australian research, which showed only 4 in 21 'responded' and independently working out from the study data, that the average lymphocyte count progression was barely better for the 'responders', than the 'non-responders'. Given the latter were specifically chosen as responders I thought it was pretty telling evidence of no statistical benefit. The trial methodology still didn't sit easily with me until I later recalled the 'Regression to the mean' statistical observation. I later ceased taking green tea because I needed treatment and doing so understandably wasn't permitted as a condition of the joining the clinical trial.
Did you happen to notice my reference to this study of high dose vitamin D and turmeric?
Diabetes did come to mind....I've never had any glucose issues on previous blood work, but may consider following my home glucose levels for a bit to see if something has changed. Good thought. Thank you
Unsure whether applies to you but been on W & W year and half & seems unbalanced electrolytes has become an issue so trying one of the sugarless powders combat it?? Of course also helps dehydration too.
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