Hi to all my CLL friends , i was doing well after 9 months on calquence ... i had minimal side effects which were occasional stabbing pains in my joints and muscle stiffness . I also had petechiae in my lower legs and feet as well as purpura on my hands and arms . to me this was no big deal compared to last year when ibefore i started taking Acal. my hemoglobin was 7.1 and my spleen was 2 1/2 times normal size ...with much discomfort and some pain .... after starting Acal. my spleen shrank and then i had 2 iron infusions in jan of 2022 and my hemoglobin went to 12.8 and my absolute lymphocytes were 8432 ... begining in feb. my platelets were 172 ... by the end of march they were at 80 .. mid may - 70 ....... by july 15 th they were at 44 . i reported this sad trend to the forum and some of you responded with good advice .THANK YOU !!! .... i called my oncologist and his nurse said that my onc. would get back to ... i already had an appointment the following month so i guess he was not that concerned yet since platelets can go up and down frequently ..... i did some research and in the mean time i decided to start taking papaya leaf extract as well as drinking beet root /barley green powder drink every day . it gave me more energy which was nice ...... after 1 month it had slowed the falling platelets to 37 but it did not increase them .. so it must have helped my platelets ....... my onc. finally called for my regular scheduled appointment and prescribed 4 days of 40 mg. of dexamethasone .. terrible .... i had stopped taking the papaya leaf extract a couple of days before so i would not have any conflict with the DEX. after that another blood test ... so with the papaya leaf extract and green drink my platelets only dropped 7 points in one month ... after i stopped the papaya extract and took the DEX. for 4 days then my platelets had dropped to 26 .an 11 point drop ......that was only 12 days after my 37 platelet count .... ...the Dex. did not increase my platelets like it was suppose to . instead they went down more ---- even faster then before .. he had me stop the ACAL. immediately . by the way my white blood cell count also dropped to 3.8 . i don't think it has ever been below 8 .... that was last week ... now i am scheduled for an infusion of Rituximab and a bone marrow biopsy . i also ordered more papaya leaf extract . any advice would be most appreciated at this time . blessings to all of you dear people . james
Follow up on low platelets and stopping Acalab... - CLL Support
Follow up on low platelets and stopping Acalabrutinib
Sorry to hear of your recent events. I am going through similar events myself. My Platelets go anywhere between <10 to 17 on a daily basis. Currently having platelet transfusion every other day. Just finished having Rituxamab 3times a week for the past 4 weeks and it's made no difference. My consultant has told me that my bone marrow is so full of CLL that the Platelets can't get out. This has been going on for nearly 3 months and as you can imagine is very demanding being hospital so frequently.
I hope your treatment improved your count so 🤞
Take care
Hi Nicebaps , thanks for your quick response . i remember corresponding with you some time ago ..we had prayed for a better outcome for you ... after hearing of your experience i am going to tell them i want the bone marrow biopsy before i get the rituximab infusion to see what is really going on and what would be the best procedure after looking at the bone marrow .. even if we are not in the best condition God has not changed , so keep looking up and moving forward , blessings , james
Sorry to hear you are off Acalabrutinib after doing well. Were you on Acalabrutinib while taking papaya leaf extract? Was your doc aware you were taking it? I was taking it while on w&w. It increased my platelets to my doc’s surprise and three month’s later, they decreased a bit. Since I was about to go on Acalabrutinib he said stop papaya since he didnt think it was working, although I felt it was stabilizing the platelets. Pharmacist said she didn’t think it would harm continuing papaya while on Acalabrutinib, but I decided to go with doc’s decision. Now I am wondering if my platelets are going to fall even more without the papaya. I will know at end of this month when bloodwork done. Are you going to start papaya extract again now that you are off the treatment?
Hi Curling 123 , thanks for the reply .. it will be interesting to see how you do once you start taking it again ... yes i was taking the papaya leaf extract while i was on Calquence . it definitely helped . 2 days after i started taking it my nosebleeds stopped .. i was having them after eating a warm meal at lunch time .... you can look at the research from India and see that it is one of the first supplements prescribed after denge fever has caused low platelets . of coarse these folks do not have CLL so the extract is going to work much better for them . the reports say within a few days it works very well .i was taking the capsules i think the liquid would be even better . i bought it on amazon so i could read the reviews . i always buy organic herbs-veg caps -the product needs at least 100 or more reviews and an overall rating of 4 1/2 stars .. .. the one i was taking meets this criteria .. the people who have the best results are the ones that take it twice a day for a month or 2 . i have not tried that yet . please send me an update after your blood work .. and yes i am going to start taking it again as soon as it arrives ... hope you improve without it . take care , james
Hi James, yes, I have read up about it. Interesting it helped with your nosebleeds. Hope it raises your platelets once you start again. I will be anxious to see my platelet count after being off it for a month.
I would stop the supplements. It's not known how they may or may not interact with the meds, and in the US, unless you are buying only certain brands there's no guarantee of the quality or lack of contaminants. Also, while there are a number of websites like this:
orgonlighthealth.com/raise-...
making large print claims of "proven medical benefits" with the smaller print bullet pointed statement "may help"..... with 2 animal model studies, one that was a Dengue Fever study and really wasn't relevant to platelet study, and a single parent publishing they think papaya leaf extract helped their baby.
Please don't take unproven supplements until you get this under control, and your doctor OK's them. Papaya leaf extract *may* improve platelets in people *with Dengue Fever* but there are no good studies for other causes of thrombocytopenia let alone enough evidence to say it always helps in people with Dengue Fever.
mskcc.org/cancer-care/integ...
Hi Sofia , thanks for the links --- they are good ones ..... here is a quote from the sloan kettering cancer center link--- "Papaya leaf extracts should not be used in cancer patients or for low platelet count until more is known about dosing, safety, effectiveness, and adverse effects in humans." this study will never be done . there is no money for it or incentive to do it . i'll let everyone know if it helps ... i do know one thing the side effects of 40 mg. a day of Dexamethasone --were terrible and it did not help my platelets ----- i always appreciate your input .. hope you are doing well. james
Well, studies actually are being done in India because it seems that there is indeed a beneficial effect on platelets in patients with Dengue Fever. It is thought it's related to platelet activation, specifically CD110 receptors on megakarocytes, and may turn out to be effective across disease states.
pubmed.ncbi.nlm.nih.gov/338...
My take on it, with regards to US people specifically, is that any "supplement" may not be efficacious, as well as possibly contaminated, because of the problems surrounding supplements and their regulation in the US. There's a huge, huge problem with people being able to sell substances that are other than what it says on the label. So in the US at least, one needs to realize this and seek out only the companies doing QC testing for efficacy and purity.
pubmed.ncbi.nlm.nih.gov/269...
pubmed.ncbi.nlm.nih.gov/277...
I am a huge proponent of things found in nature to use as medications. Aloe vera gel is the classic example of a natural compound that no one has yet been able to identify exactly what makes it so good at skin healing; it's the gel complex in it's entirety that has beneficial effect. The
same is probably true for other natural extracts of various plant products, since some plant extracts must be done a certain way or the active ingredients aren't available.
The problems with extrapolating use in one specific use/disease state across others, is that it may or may not work and if one chooses to use *only* untested, unproven remedies based on extrapolation, outcomes will be worse. Unlike yourself, who has tried other mainstream things and *know* you react adversely, and are now seeking alternatives. And happily, have found one. As opposed to people who will jump on the alternatives as first choice. As well as websites/sellers who make definitive claims. Or point to animal studies that should be the basis for further research, as "proof" something will work in humans. But I still maintain that when trying new things (papaya leaf extract) having unknown interactions with the other meds, I would stop the supplement/other meds and keep the variables down to a minimum. We don't know how rituximab will be affected, if at all, by a compound that (if this is the mechanism) affects CD110 receptors on megakaryocytes. Or how the extract might interact with the rituximab. I would hold all the extra stuff, and see how I reacted to the rituximab, before judiciously adding back things one at a time. I wasn't intending my post to be a pushback against using it at all, just, trying to control variables in a new situation. I would make the recommendation if it were mainstream meds as well, recommending caution if the drug hadn't been tested against rituximab.
Like, I took CBD oil for years until I got on the CG-806 trial. It helps with pain for me, but I didn't want to confound results with an unknown in the mix.
Hi Sofia , another good post ...thanks . glad to see you found the research from india .. the papaya leaf extract definitely helped me as apposed to the dexamethasone ... i was still taking the calquence when i took both of them ... i stopped the extract one week before the dex. so the dex would not be hindered by the extract ............ and you are quite right about the bogus herbal claims some people unfortunately buy into hoping for a cure .... lots of herb combos that are for sale don't have enough of the herb to be of any therapeutic value either .plus who knows where or how they got them .. yes the aloe gel has been a real blessings for me... sometimes i drink it .. but since stopping the calquence i have had hives almost daily .. large welts the size of a dime ... the aloe gel COLD from the fridge brings quick relief and in 4 hours or so they are gone .without the aloe they are still there and get worse at night .... this went on 4 about a week -- now i have not had an attack for the past 3 days . before my cll got worse i had never had hives in my life .. i could sleep in poison oak and have zero reaction . life is different now .. and yes i will not use the extract till i see how the rituxamab does ... i want to have the bone marrow biopsy before the R also .... hope you have a good day .. james
my consultant said I could take papaya leaf
Hi Sunshine , thats good and pretty amazing that they would give you the O.K. ..i take the veggy cap ones ; two -1200 mg. caps. once a day .. and occasionally the liquid but it tastes awful...the clinic i go to has never even heard of it let alone would give me the go ahead to use it .... i will do a report on it in a week or so after my next blood work .. it does not dramatically increase my platelets but it " Definitely" helps with the clotting issue .. hope you are doing well . blessings , james
I had good success with papaya leaf while I was on Acalabrutinib. It brought my platelets up about 40 points, but more importantly, they stopped declining once I started it. I did not rely on my oncologist to advise on the papaya leaf, since like most, mine has no training or experience with such things. Their business is based on prescribing pharmaceuticals and that’s what I see them for. I declined steroids because the risk/benefit for me was just not worth it. I have since done rituximab infusions although not specifically for platelets. My platelets did bounce around a lot after the infusions although I can’t say the net effect was harmful or helpful in that regard after a half dozen of them. Every situation is different though. What works for one doesn’t necessarily for others and vice versa.
hi Flipper , thanks for the reply .. you are correct there are very few oncologist or doctors that know anything about herbal remedies or hydrotherapy or even the work that a chiropractor can do ... they are busy in their field so they do not have time or incentive to figure it out , yes i have done the prednisone and the dexamethasone ... my oncologist is going to have to give me a good explanation of why i need it if he prescribes it again ... it is great to hear that you had good success with the papaya leaf extract ,,.how many milligrams did you take per day and for how long ??? and you also had the rituximab ... how are you doing now ??? yes we are all different .... we all have hands and we all have CLL but are finger prints are unique only to us .... how the treatments work for each of us can be as different as our finger prints ,,,,,, here is a quote from one of the journals about HM = Herbal Medicine " German doctors can obtain a postgraduate qualification for “naturopathy,” which includes HM. At the end of the year 2011, 15.949 German doctors had the qualification “naturopathy,” with 70% thereof working in the outpatient sector [4]. However, recent data suggests that far more doctors prescribe or recommend HM to their patients. In a cross-sectional study, more than half of the responding general practitioners (GPs) recommended HM in their day-to-day practice, most of them having no additional qualification for “naturopathy” ....... notice more than half . it is to bad that the U. S. is so far behind countries like Germany is this regard .... it would be great to have both the targeted therapies and the Herbs ...... blessings , james
Sorry, but you can't attribute your improvement in your platelets to starting taking papaya leaf, unless it's something mainly seen when starting papaya leaf and less likely otherwise. You just can't tell without a placebo arm in a clinical trial and papaya leaf hasn't been tested with CLL.
For the record, in my acalabrutinib + venetoclax + obinutuzumab clinical trial, my platelets dropped from the 50s to 70s range they'd been in the past year, to the low 30s a week after I started acalabrutinib. I was in hospital for febrile neutropenia at the time, having daily blood tests, so I have excellent records. Two weeks later, my platelet counts were in the 40s a month later, they were in the 70 to 120 range. Had I started taking papaya leaf at the time, it would be tempting to attribute it to that, but correlation doesn't necessarily mean causation. I consider it was the acalabrutinib clearing out my bone marrow and shrinking my spleen that boosted my platelet count by around at least 50.
That brings me to why it's important to have a CLL study. Low platelets when you have CLL can be caused by one or more of the following:-
- an enlarged spleen sequestering and filtering out platelets
- bone marrow CLL infiltration, leaving less capacity for platelet production
- immune thrombocytopenia purpura (ITP)
- treatment drugs impacting on platelet production (when in treatment)
Per the How it Works section of mskcc.org/cancer-care/integ...
Major compounds identified in C. papaya leaf are rutin, carpaine, manghaslin, papain, and clitorin (15). Papaya leaf extract modulates the immune system by enhancing the production of Th1 cytokines such as interleukin-12, interferon-gamma, and tumor necrosis factor-alpha. Fractions with molecular weight less of than 1000 are most active in inhibiting tumor cell growth (1). Papaya leaf extract also has antioxidant effects (5) and contains antibacterial and phenolic compounds (6) (8) but the mechanism of action remains Major compounds identified in C. papaya leaf are rutin, carpaine, manghaslin, papain, and clitorin (15). Papaya leaf extract modulates the immune system by enhancing the production of Th1 cytokines such as interleukin-12, interferon-gamma, and tumor necrosis factor-alpha. Fractions with molecular weight less of than 1000 are most active in inhibiting tumor cell growth (1). Papaya leaf extract also has antioxidant effects (5) and contains antibacterial and phenolic compounds (6) (8) but the mechanism of action remains unclear.
Per The molecular mechanisms that control thrombopoiesis ncbi.nlm.nih.gov/pmc/articl...
The primary regulator of platelet production is thrombopoietin, an acidic glycoprotein produced primarily in the liver, kidney, and BM. (bone marrow)
Someone else with greater biological knowledge might be able to hypothesise a mechanism by which platelet production is boosted by papaya leaf, but I can't see one. I'll add a plot of my platelet drop and recovery later.
Neil
I commenced acalabrutinib treatment on the 3rd December, when my platelet count was 53. On 9th December my platelets dropped to their lowest count of 29. They troughed in the range 29 to 30 until 18th December, when they commenced their recovery into the 80+ range.No papaya leaf needed! craterlake take note 
The plot ends when I had my first obinutuzumab infusion, after which I had one lower count of 66, before my platelets continued their improvement to around the 120s.
hi AussieNeal , so if you had a choice between rituxamab and obinutuzumab which one you choose ? thanks for the info .. james
Definitely Obinutuzumab.
thanks . i will discuss this with my onc.
I am doing ok, thanks. My platelet issue was over a year ago and they have been in the high 90s to upper 100s rage for a while now. They bounce because I’m heavily treated (3 drug combo) lately. I took the papaya for about 4 months. It was a liquid extract and I don’t recall the mg equivalent. Once I stabilized in the mid 100s I tapered off the papaya with no ill effects. I will never take steroids again unless there is an acute life or death situation and compelling evidence they can help. I hope you can get your platelets sorted out. Going about day to day with our counts so poor gets old real fast.
Hi Flipper , i just sent you a private email .. no need to respond to it . you already answered my questions . glad that you replied here so others could benefit from your testimony about the papaya extract in spite of the push back .. very glad you are doing well . it is always good to hear positive news from someone who has suffered with this disease .... it also gives my wife and i hope that i will be better some day . blessings , james
No problem James. Pushback is an odd situation but everyone is entitled to an opinion. Having spent a career in pharmaceutical development and clinical research, I do appreciate the bias my industry has against folks utilizing natural means to improve outcomes for various health situations. There is a widespread campaign to discredit anything that might present itself as competition which often trickles down through healthcare providers and even among end users. The primary argument of demanding a clinical study for everything we consume and the resulting fear mongering is an old and tired one. It’s all about influencing behaviors to maximize profits. With regard to platelets, I do realize that controlling the disease is key to maintaining healthy levels and interventions be it with diet, pharmaceuticals etc., to directly influence platelet levels are a temporary fix at best. The situation gets tricky when the methods we rely on to control the disease also adversely affect levels. In my situation, I opted for rituximab over obinutuzumab as there is much less risk with the former both for acute and long term adverse effects.
craterlake and flipperj, who is trying to compete and build market share? Craterlake described his experiences with falling platelets while on acalabrutinib. I illustrated my similar experience. He credited papaya leaf for improving his platelet count, something not prescribed by his medical team. Both of us saw our platelets recover similarly, only I didn't spend money on papaya leaf extract.
flipperj do you have references for your statement
"rituximab over obinutuzumab as there is much less risk with be former both for acute and long term adverse effects."? I accept that you can experience rather strong infusion reactions with obinutuzumab - I had one in my first infusion, but none in the next 8. Infusion reactions happen with rituximab too. I've not heard of differences in long term adverse effects.
Neil
The risk for me was with the infusion reactions, increased neutropenia and infection risk, and long term suppression of antibody production, as much as 2 years out in my doctors experience. In his view, in light of my current situation, he advised against the O. I did also have a pretty horrific reaction to a steroid in the past that nearly killed me. Not willing to repeat that. I got through the R with infusions with only careful monitoring.
Not everything in healthcare fits well into a clinical study model and that system can easily work to our detriment when over relied upon. When this happens, the only tools we have at our disposal are chemical interventions. Not a very desirable or healthy situation to me.
Adding rituximab to fludarabine and cyclophosphamide improved progression free survival and has a proven cure rate* of about 55% for IGHV mutated folk.pubmed.ncbi.nlm.nih.gov/209... That's how this chemoimmunotherapy treatment became the gold standard treatment for CLL for about a decade - provided you were young (65 or younger) and 'fit'. I gather this is because chemo needs dividing CLL cells so the FC can corrupt the dividing cell's DNA so apoptosis (hopefully) kicks in. Any CLL cells not dividing during chemo treatment cycles can survive. That is unless you add the anti-CD20 monoclonal antibody rituximab finds the CLL cell and triggers its destruction. So the price you pay for a higher complete response rate and a higher percentage achieving uMRD and longer remissions, is an extended period of immune compromise. Until we have treatments that selectively target CLL cells and leave healthy B cells alone, this is the conundrum we face. The above success is a factor behind the decision to add rituximab, obinutuzumab or ofatumumab to targeted therapies to hopefully develop a fixed term therapy that would deliver very long remissions. Arguably not a good idea in a pandemic though .
My experience fits with your doctor's experience. Blood tests didn't detect B cells until 20 months after my last obinutuzumab infusion. However the experience of myself and another trial participant showed a possible benefit of obinutuzumab for those who are severely neutropenic. We both breezed through the venetoclax ramp up, which had me worried, given the propensity of venetoclax to cause severe neutropenia. Another trial participant not on the obinutuzumab arm, struggled to get through the venetoclax ramp up due to developing neutropenia with each dose increase. I was injecting G-CSF daily prior to starting the obinutuzumab infusions, which allowed me to wean myself off them. For the first time in 11 years I was no longer neutropenic.
I agree that clinical trials are not appropriate in all circumstances, but as the two above experiences with platelet recovery illustrate, you really do need a clinical trial to prove platelet recovery when taking papaya leaf extract is not a matter of chance or timing, but due to the properties of the extract.
* by cure, I'm talking about IGHV mutated folk who manage to achieve 7 year remissions not progressing after 20 years.
Neil
That’s really interesting about the O and neutropenia. I have been battling neutropenia for the last 8 months on R plus V plus recently Zanubrutinib triple therapy. The situation is really holding me back with my treatment and depending on growth factor injections is not my preferred path forward as the duration I have been taking them for has not been well studied. Plus, I hurt like heck for days and they really mess with my gi tract.
As far as validating papaya for health promotion, I’m not too interested in that. My days are already taken up in research and there is a burn out associated with pouring over study data. My platelet levels were in decline for months and spiked a few days after consuming the leaf. For me personally it was a simple, cheap, easy and low risk endeavor that paid off. I did a quick check for CYP interactions and never really gave the topic much more thought than the foods I regularly consume.
If it's any reassurance, I was reliant on G-CSF injections for about 2 years and had over 200. I never had any problems with them, other than bruising when I had low platelets. Bone pain is a fairly common side effect, but responds to Tylenol/Panadol/APAP.
Neil
For what little it may be worth, my platelets were extremely low when, in March 2020, I began a suboptimal level of Ibrutinib—280 mg daily—because of a high percentage of those in a clinic trial experiencing respiratory issues, of which I've had too many to count. Interestingly, the ibrutinib caused my malignant white blood cell count to soar immediately to over 75,000 from 22,000, while doing nothing to increase (or decrease) my platelet level. *** Upon researching the matter, I found a number of sites touted organic wheatgrass for increasing platelet levels—and, indeed, I firmly believe that organic wheatgrass powder, manufactured by Amazing Grass, is the sole reason why my platelet levels began increasing to the point where over the past year or so they have been consistently at or even above the mid-level of what is considered a normal range.
I can't find any papers on wheat grass boosting platelet production on PubMed and the MSKCC entry for wheat grass makes no mention of it.
mskcc.org/cancer-care/integ...
Maybe it's providing a nutritional benefit not obtained from the rest of your diet?
You've reminded me of a friend from my high school days, who sadly lost his lovely wife to liver cancer. My friend was convinced that the wheat grass he lovingly grew for her would cure her. She hated the taste. Sadly there are no significant scientific studies to substantiate claims that wheatgrass can help cure or prevent cancer.
Neil
One of the top sites [allremedies.com/foods-to-in...], among a number of them, lists papaya first, pomegranate seeds second, and platelets third. Here's what it says:
3. Wheatgrass
If you are looking for the best foods to increase blood platelets instantly and naturally, you should not ignore wheatgrass. According to a study revealed in the International Journal of Universal Pharmacy and Life Sciences, wheatgrass is effective in boosting the level of platelets in the blood [3]. This study has also shown that wheatgrass can increase the red blood cells (RBCs), white blood cells, and hemoglobin. It is due to the appearance of chlorophyll in wheatgrass. Another reason is that the molecular structure of wheatgrass is similar to the hemoglobin molecule in human blood. For this treatment, you add a few drops of lemon juice to a half cup of wheatgrass juice and then drink it daily to elevate the platelet count.
Hi Pogee,
Thank you for providing your reference, which I am pleased to see also provides references. Unfortunately, as is typical with herbal and supplement recommendations, these papers are, with the exception of part of the pomegranate one, Pomegranate juice consumption reduces oxidative stress, atherogenic modifications to LDL, and platelet aggregation: studies in humans and in atherosclerotic apolipoprotein E-deficient mice pubmed.ncbi.nlm.nih.gov/107...
about animal studies! The pomegranate study isn't about boosting platelet counts, but the possibility of reducing the size of atherosclerotic lesions, fed on part by platelets, which can block blood vessels.
Emphasis in the following quotes is mine.
The papaya study is a mouse model study Does Carica papaya leaf-extract increase the platelet count? An experimental study in a murine model
ncbi.nlm.nih.gov/pmc/articl...
"Fresh C. papaya leaf extract significantly increased the platelet and RBC counts in the test group as compared to controls. Therefore, it is very important to identify those chemicals of C. papaya leaves as it can be recommended to be used as a medication to boost thrombopoiesis and erythropoiesis in humans and in animals in which these cell lineages have been compromised."
They used dosing of 0.2mL (2 g)/mouse/day and 0.5 mL (5 g)/mouse/day. A mature lab mouse weighs about 25 grams. So weight for weight for an adult 80kg/176 pound human, that translates to 1.6kg of papaya leaf extract per day! At the lower dose of 0.2ml, that's still 640 grams or about one and a half pounds! Also, 0.2ml is around 0.2 grams, not 2 grams! (Reportedly, supplement studies are considered to be amongst the poorest quality medical science papers.)
The wheat grass paper INVESTIGATION INTO THERAPEUTIC ROLE OF TRITICUM AESTIVUM (WHEAT) GRASS IN BUSULFAN INDUCE THROMBOCYTOPENIA is determining whether low platelet counts in rats, caused by the chemo drug busulfan, which interestingly is used to treat the blood conditions CML and MDS, can be reversed by feeding the rats wheat grass.
Per the abstract "The present study was planned to evaluate beneficial effects T. aestivum on busulfan induced thrombocytopenic animals. We have made the unexpected observation that fresh juice, methanol and acetone extracts of T. aestivum significantly increase Hb levels, RBC, total WBC and differential WBC counts in pancytopenic rats."
Per table 2, they found the wheat grass preparations increased the lymphocyte count by between 26 and 63% over the control group. What does that mean for CLL?
What's interesting is how much wheat grass an adult human would need to consume, weight for weight. It works out at two glasses of wheat grass juice per day, which seems doable, but I'm not sure of the methanol and acetone extracts, which work out at 4kg or about 9 pounds per day for an 80kg adult!
Importantly, these are studies in mice and rats that provide no guidance on the dose or safety of the dose in humans. Nor do we know how they translate. They may or may not have same effect.
Neil
You are, Young Man, an incredibly valuable resource, devoting your life and intellect for so many of us, and I, for one, cannot begin to put into words just how much of an inspiration you are. With regard to your extended commentary here: many, many thanks! As always, it's replete with exhaustive references and commentary.
*** I would just like to note that so many studies that begin with lab tests on mice and rats ultimately prove to be invaluable to humans; thus, for those who have certain medical conditions requiring interventions where previous interventions have failed, I would be loathe to disparage such preliminary studies or anyone grasping at straws, as it were. Of course, I'm fully aware of all the scams out there based on unproven claims; however, the question I would put to you is this:
*** If no medically accepted treatment was working for you, and you were in constant physical pain and mental anguish and/or otherwise facing your mortality with fear, would you consider alternative treatments, even if unproven, or would you resign yourself to "fate" because you refuse to try anything that's not scientifically established beyond question and/or medically approved? I would suggest that you, of all people, would not easily walk away from available options.
Pogee, I took 2g per day of EGGC for nearly 11 years, based on the promising Mayo Clinic research. I also took turmeric for most of that period, because at least there was in vivo human research. In vitro results were eventually underwhelming and illustrated the poor quality study concerns of supplement studies, so I wouldn't recommend it today. See healthunlocked.com/cllsuppo...
This was before targeted therapies were available in Australia.
Seriously, treatments have advanced so much in the last decade, with far better response rates than were achieved a decade ago. That's why I very much doubt that there would be any alternative treatment likely to come on the scene that would offer any real hope, if medically accepted treatments were no longer working for me. I haven't seen anything come along with more promise than EGCG in over 12 years. As we saw, wheat grass might worsen CLL, given the rat trials showed all formulations tested boosted lymphocyte counts, including beyond the normal control in one case. With respect to boosting platelet counts, we have five approved drugs: drugs.com/drug-class/platel... plus platelet transfusions.
Neil
Thank you for your, as always, clear and well-researched response. Although we live in an Age of Better Living through Chemistry, I have a healthy skepticism for virtually all drugs. Without any evidence, I nonetheless think the odds are good that each of the five approved drugs for increasing platelets that you mention has more adverse effects than positive ones. Not having taken or read anything about any of them—other than the information on your linked site—I can't make any definitive statements; however, looking at that linked information does nothing to inspire me to take any of them, short of a critical need where all else has already failed.
*** It appears to me that you aren't a believer in alternative medicines and/or treatments, and that would certainly be your right. However, I believe it's well-established that Western medicine and its partisan advocates have far too many biases and inconsistencies, along with adherence to a rigid set of allegedly inviolable beliefs, to be the be-all, end-all of health-related practices. However, this being a subject that has numerous political overtones, I'll say no more—other than that you previously shut me down for writing about Covid-related issues that were allegedly "triggering" some rather sensitive site members.
*** In any event, be well—and be open to things beyond your ken.
Good morning , Well said Pogee , there are zero man made drugs that do not have some side effect in the body ... no free lunch so to speak ---- i always try to take any supplements using the whole herb .. if you read the research that is done using herbs one of the first things stated after finding out they worked is that they need to find out what compound in the herb is giving the positive results instead of just giving the patient more of the herb to get the desired effect .. what process is used for the extract ,???? some of them are harmful solvents .... when i take golden seal for the flu ,which fortunately i seldom get ,i take the whole herb that is ground up into a powder ... if i could get the papaya leaves whole i would boil them and then drink the tea . that is the preferred method when people use sour-sop / graviola for medicinal purposes .. fortunately you can buy the whole dried , organic leaves on amazon and make your own tea. i also have taken the EGCG extract before i started the calquence . it slowed the upward trend of lymphocytes but did not lower my platelets either like the calquence has done ..as soon as it is a little cooler i am going to start drinking the green tea instead . I have spent years traveling in the tropics doing missionary work for a hobby . i have tried most drugs for intestinal problems ( gut bugs ) NOTHING works as good as activated charcoal powder in a glass of water . you keep taking it till the vomiting or diarrhea stops . you start feeling better right away . then golden seal twice a day for 3 or 4 days with lots of water to re-hydrate plus prayer and your good to go ... am i glad that they have all the targeted drugs . of coarse .... could they find more natural herbs to use if they tried . of coarse . look at the research they did with the Neem plant for leukemia they said it helped cause apoptosis in the lymphocytes , then they stated that more research need to be done using the neem and i have not found out if that was ever done and so it goes . in the mean time we will just have to do the best we can and leave the rest with God . blessings to you Pogee . james
Although I can't immediately reference the site, I recall reading that ECGC has a synergistic effect, along with ibrutinib and possibly other BTK inhibitors, on one of the kidney enzymes (P450?), which could overload the kidneys with harmful waste, and is to be avoided. That's why a number of anti-carcinogenic mushrooms, such as lion's mane, cordyseps, and tiger's tail, are high discouraged by my oncologist. Hopefully, your taking ECGC didn't have an adverse effect on you, but I, personally, would advise others to carefully consider the possible consequences of such a synergistic effect before taking it.
The Mayo Clinic phase 1 and 2 EGCG study reports noted that some patients did not like the nausea and digestive system disturbances. Other patients were removed from the studies due to concern with the degree of liver system poisoning. Transaminitis limited the dose that trial participants coulld tolerate.
Mayo Clinic took out several patents of EGCG in combination with proven leukaemia drugs.
Neil
Thank you for the Mayo info. I was mistaken: it's possible overload on the liver enzyme CY3P4, not kidneys. My bad.
Good morning Pogee ,, i starting taking barley green powder but i could always use some wheat grass powder instead to see if that helps so i ordered some last night .. thanks 😊.. hope you are doing well . 👍 blessing , james
Blessings to you, too.
Hi James,
So you aren't concerned that this wheat grass trial on rats showed that all wheat grass formulations boosted the lymphocyte count by 26 to 63% after chemo treatment, with the response to one formulation boosting the lymphocyte beyond the normal, non-chemo treated control? See Table 2 in the study report: researchgate.net/publicatio...
Interestingly, while there are some studies on barley grass and acute leukaemias, I can't find any studies on wheat grass or barley grass and CLL.
Neil
Hi AussieNeal , not at all . my main concern is with my platelets ... as of last thursday my lymphocyte count was 3.8 so even with a 63 % increase my lymph. count would only be 6.2 ..... besides the green drinks are good for the rest of the bod .... they may even help produce a few good lymphocytes instead of malignant ones .. i always appreciate your input VERY much .. you are to be commended for sticking with the EGCG for all those years ... plus all the up to date info you are able to articulate so well . thanks again .. blessings , james
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