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JHP

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JHP last won the day on March 13 2023

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  1. I'll chime in. Trusting random theories without any scientific basis or without understanding fully what the unknown is is dangerous. There will never be perfect, fully comprehensive data to work with. For example is butter good or bad. They say dousing cell lines in bleach will kill it but also humans, so read cell line data warily. I think the best anyone can do is to understand the science and studies available and base their decisions on what level of evidence they're comfortable with, because obviously, the doctor's bar of evidence is required to be different. As you may have already seen from googling, there will be evidence for in vivo, in vitro, observational studies, retrospective studies, etc. Obviously, the gold standard is double blind as much as ethically possible in design and this is what the doctor recommends. Sometimes they find out that animal studies don't translate well to human studies, or you come across a successful animal study with promising results and no evidence of harm BUT for whatever reason, funding or whatnot, there's no human study. That's a decision people have to make. With these adjuvants, more open-minded oncologists may use the words "there is insufficient evidence at the moment" for example, when I asked about the findings report by a major center about the role of allergy medications being beneficial. The oncologist said they saw that report too. The evidence for this is on the level of a theory + retrospective study. But science doesn't understand the mechanism enough enough yet, and there are some people who this won't help. Is it even effective? What if it causes harm in some people under some circumstances? Is it just correlation? Same with fasting. The oncologist said they would not recommend it. It has shown good results in mice as an adjuvant in the context of chemo/radiation treatments, and there is a human study showing some benefits. Does random 12-14-16 hr IF have benefits outside of the chemo or radiation protective benefits, who knows? What kinds of fasting (there are several kinds), to what extent are its benefits, what percentage of people can it benefit, can it cause harm (paper mentioned fasting before but not after radiation otherwise potentially harmful), these are all unknown. People who don't do this can do fine too. Doctors probably wouldn't recommend it. Given this information, whether one wants to try or not is a personal decision. I don't know in what context a doctor would mention "no evidence". For mushrooms which used to be standard in Asia but "alternative" here until more studies came out...Before those studies came out, people had to decide if it has been used for many years (which precludes harm for most people), and it seems to provide some benefit, should they take it? Well, studies have come out and people taking it do experience some immune benefits and slightly increased LE. Science thinks this benefit comes from immuno-modulation. Some TCM plants has been disproven by modern science, some have been proven or has potential and continues to be studied. A lot of the theories would be study shows _e.g. antioxidants/plant/greentea__ are beneficial, but it's discovered that taking them in supplement form overall or in conjunction with standard treatment is harmful. While reading, there was a case study of a man in Korea Stage 4 who cured himself via IV ginsenosides but that hasn't been replicable so that's why it remains one case study. On the other hand, one of the TCM adjuvant recs for lung cancer is sanghuang which is fairly unheard of here. Supposedly, it calms lung inflammation and was used to treat SARS patients. There are people who follow such and such protocols but these are unstudied off-label uses.
  2. Thanks, @Tom Galli. Yes, it is worthy of celebration. I hope that it will continue working. Maybe I'll bring this up next time, I don't want to take up their time over this. When they mentioned it, I thought it was a treatment, but it sounds like it's a mechanism that can be targeted possibly using more than one method.
  3. CTs show shrinkage by half at the six month mark. Brain CT TBD. The oncologist says that this is all good news, and the plan is to keep on going with the Tagrisso. I was reading things again in the past few nights; it always happens before the appointments. I asked about BLU-945 trials, but the oncologist said only those with progression would qualify. The accompanying intro for this drug in the research journals is anxiety inducing. I also asked the oncologist hypothetically, what would happen if some spots persist? The answer was increased dosage only for brain mets, otherwise radiation to the specific spots or something like nucleotides. I tried to find info on nucleotides without much success. Are nucleotides an actual actionable treatment or is it this which still seems to be in clinical trials https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9044757/? Does anyone know what this is exactly or have experience with it? It sounds like a type of immunotherapy...
  4. @LilyMir Glad this was of help IF has several types which include the one mentioned here and more which this paper talks about here. From <https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7490158/> There is an elevated risk of gallstones when fasting very severely so that has to be weighed against possibly beneficial outcomes as an adjuvant for people undergoing treatment. The thought is that something about plunging the body into near starvation mode modulates the immune system and primes the targeted cells to be more responsive to treatment relatively speaking. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7490158/ I believe the calorie number is the most important so technically it wouldn't have to be brown rice and broccoli but downing a calorically equal amount of soda probably wouldn't be an efficient way to go about it. I get it though. This isn't for everyone and people can do fine without it. It'd be hard to eat like this long-term, which according to the papers is not necessary though, only when paired with ongoing chemo/radiation treatments. There are some papers studying the timing of fasting when paired with treatments. IIRC, there was a specific paper saying fasting before radiation is beneficial but continuing to fast after is harmful, etc. The timing is important. They have known for a while about this mechanism, but I believe this is a recent human study. Article from 2012 on benefit with chemo https://news.usc.edu/41212/fasting-makes-brain-tumors-more-vulnerable-to-radiation-therapy/ Considering that statistically people eating the typical western diet are getting fatter, that checks out in general. Consuming excess calories in general can cause excess weight -> obesity is a major cause of inflammation -> inflammation is associated with many conditions including development and progression But speaking specifically about fasting, there's some beneficial mechanism there...
  5. I agree with everyone about sugar. It certainly won't hurt to reduce added sugar if excess amounts are being consumed, but carbs are turned into glucose too so you're not really removing glucose from the body by removing sugar. If one were to consider trying to affect the body via the fact that cancer cells have a higher metabolism, then there seems to be some benefits to reducing the body's glucose levels beyond normal...but people who are severely weakened and who have lost a lot of weight shouldn't try according to the papers. There's more literature out there about combining IF with radiation/chemo. source
  6. I was exactly where you are now back in December except my dad could no longer walk or turn his head. He managed his pain with pain killers and accupuncture for about two months before going to the ER and getting diagnosed. Worst of all, it was an insurance quamire since he was moved across state lines after the admitting hospital decided this was beyond their scope (their surgeon was not specialized in this and the risk was paralysis) and they wouldn't allow any oncological treatment before returning to state. To their credit, the biopsy and biomarker testing was done at the second hospital. After this choosing a facility ordeal, my advice is to find an oncologist specializing in LC at the best facility overall that you can, because they will be more up to date with LC specific treatments and have more resources. For example, waiting for scans has never been a problem at the current place because it's as simple as if the doctor decides that it's urgent they let him jump the line same day (not the case with the two previous hospitals he was at). My dad's oncologist became the main point of contact to coordinate with other specialists like radiation oncologist, brain mets specialized radiation oncologist, neurosurgeon, etc. I don't personally know anyone who has a drug addiction, so maybe it's different for people who did witness addictions all around them. Imo, if your mother is hurting and unable to sleep, and being able to rest is important, now is not the time to worry about developing a lifelong drug addiction. I worried a bit about this too and asked if he should wean off after his condition improved a bit, but the oncologist's attitude was basically you never know what will happen in the near future and any fears at this juncture should be weighed against giving the patient a good quality of life at this moment. I highly encourage you to reach out to facilities you're interested in with oncologists + radiation oncologists by phone to inquire about possible appointment times because they'll need to be brought on anyway. If surgery is needed later, the oncologist can always refer you, but you don't necessarily need to see the surgeon before trying to make these appointments. I coordinated with the hospital's patient outreach to get him appointments with the place he's at now, but idk about your insurance. If your mother is already diagnosed, then reach out to the pcp or whoever diagnosed her to try getting a referral to where you want to go. Also, do your own research about the facilities. Before they discharged him, Dad was given the choice of going back to the subpar original hospital that transferred him or going to a good NCI but with a 2 week wait time for oncological treatment. I later asked about a third option and it was actually available and even sooner, but they just routinely recommend to the good NCI.
  7. The early days are the worst when you don't have any knowledge of what is happening and all that waiting to get appointments. The most important thing is getting a full diagnosis first. What kind of LC is it? If it is NSCLC, then biomarker testing. Before getting the biomarker testing done and knowing what kind of mutation he had, the local hospital's plan for my dad was to just do lots of radiation. After he moved to a hospital with more resources and got the biomarker testing results, it turned out that radiation would only be a small part of his treatment plan, and it would mainly be targeted therapy. Maybe you can ask the specialist she's seeing if they offer biomarker testing. If they don't or if you're looking for an alternative place for long term-treatment, you could start with NCI facilities. The designation basically means that they have better outcomes relatively speaking than local hospitals or other places without the designation. Ideally, find a oncologist specializing in LC. The doctor can prescribe oxy or other strong painkillers. Yes, the sooner the better. They'll be able to tell pretty soon after getting a tissue sample what kind of LC it is under the microscope, but the biomarker testing has a longer turnaround time for tissue vs liquid biopsy. For my dad who got both, it was 3 weeks vs a little over a week. The biomarker testing will determine whether targeted therapy or immunotherapy would be applicable.
  8. I also second Karen's advice on becoming your own best advocate or have someone be your advocate. My dad chooses to not know too much about his condition while I have over four hundred pages of notes now. Thankfully, some of it is no longer relevant. The doctors are the experts, but you need to do your own thorough research and be prepared to ask them questions. If you are not seeing an oncologist specializing in lung cancer, it would be your best interest to do so. They might have a better idea about treatment methods, chemo combos, and clinical trials relevant to your situation vs a general oncologist. Please look into clinical trials too. Sometimes it is not about a cure but controlling it long enough for the next advance. One of the mods in another group has been battling her condition on and off for maybe 20 years now but everyone is different. My dad is not taking fenben but I did buy some months ago as a backup plan. Hopefully he will never have to take it. He is going through the traditional medicine route because he is eligible for targeted therapy. We are giving him adjuvants like calcium + d3 as advised by the doctors due to his bone mets, but also mushrooms and fish oil which don't interfere with the targeted therapy and which have been cleared by the doctors. From lurking in that FB group months ago, in hindsight, some people also on Tagrisso are taking supplements that could interfere with the medication. Before taking anything, please research and run it by a doctor first. Don't quote me on this, but iirc, curcumin can interfere depending on which kind of chemo it is, because it could possibly be chemoprotective which means it would protect the targeted cells from chemo as well but it could also be chemosensitizing which means it sensitizes targeted cells to the chemo. It depends on what kind of chemo. It might be beneficial for radiation and immunotherapy. All the best
  9. Fenben is said to be promising and needs more research, but most scientific authorities have definitely come out to say ivermectin is not effective. You'll still see people taking it in the FB group. They don't shut it down because who are you to deny people who believe in essential oils when you can't give them a certain alternative? You may want to check if NRG1 belongs to the hormone related group. There have been reports from people who have HER that it worsen things. By vaccine trials, I mean personalized vaccines. This is the newest scientific advance where they radiate a portion of a tumour and create a tailored vaccine from the material. So sorry to hear about that. They say that NRG1 is identifiable and they could find a way to target it. Just FYI you should consult your healthcare provider ... because consuming higher amounts of curcumin — found in turmeric capsules, for example — may interfere with certain chemotherapies, making them less effective. From <https://www.mskcc.org/news/what-are-benefits-turmeric-and-can-it-be-used-prevent-treat-cancer-here-s-what-science-says> Preliminary findings suggest that fish oil supplementation increases efficacy of chemotherapy, improves survival (38), and helps maintain weight and muscle mass (39) in patients with non-small cell lung cancer (NSCLC); and improves quality of life scores in gastrointestinal cancer patients (81). But conflicting data suggest otherwise (59) (82) although a positive correlation was reported between adherence to supplementation and the ability to reduce weight loss during radiotherapy (83). Additional studies found an EPA-enriched oral supplement improved tolerability of chemotherapy in advanced colorectal cancer patients (40); and when combined with chemotherapy, fish oil supplements may delay tumor progression in those with colorectal cancer (49). From <https://www.mskcc.org/cancer-care/integrative-medicine/herbs/omega-3> Palliative chemotherapy is aimed at increasing survival and palliating symptoms. However, the response rate to first-line chemotherapy in patients with nonsmall cell lung cancer (NSCLC) is less than 30%. Experimental studies have shown that supplementation with fish oil (FO) can increase chemotherapy efficacy without negatively affecting nontarget tissue. This study evaluated whether the combination of FO and chemotherapy (carboplatin with vinorelbine or gemcitabine) provided a benefit over standard of care (SOC) on response rate and clinical benefit from chemotherapy in patients with advanced NSCLC. Patients in the FO group had an increased response rate and greater clinical benefit compared with the SOC group (60.0% vs 25.8%, P = .008; 80.0% vs 41.9%, P = .02, respectively). The incidence of dose-limiting toxicity did not differ between groups (P = .46). One-year survival tended to be greater in the FO group (60.0% vs 38.7%; P = .15). Conclusions: Compared with SOC, supplementation with FO results in increased chemotherapy efficacy without affecting the toxicity profile and may contribute to increased survival. From <https://pubmed.ncbi.nlm.nih.gov/21328326/>
  10. Trowbee, There is a Tippens FB group that may know more about this topic. Fenbendazole supposedly works via the process of cancer cells having higher microtubule turnover compared to normal cells. With fenben the known risks seem to be liver enzyme raises in rare cases that reverse after stopping, it doesn't work, or possibly it makes hormonal cancer much worse. It's not very bioavailable, so people have ideas about how to make it more so. You mentioned rare genome...have you inquired about vaccine therapy trials? Not sure if this is available for lung or if this is the genome you're referring to, but the news mentioned vaccines being promising against KRAS-driven mutations. If your leg swelling is fluid...my dad also had a lung clot and severe leg swelling. The doctor prescribed a blood thinner for the clot but didn't want to prescribe anything for the swelling and just suggested elevating his leg, wearing compression socks, and eating less salt. Just these didn't help. What helped for him was eating more diuretic vegetables in addition to the above. Specifically for him, it was daikon radishes and wax gourd but google says there are many more.
  11. @Judy M2 Thank you for your sage advice. I've come to that conclusion too. He's getting the best care available to him right now. You're right that this is not true for all types and stages. I watched this and they mentioned that the blood biopsies could pick up on something that the tissue missed. In stage four nsclc the lack of circulating dna isn't really an issue, and this really has to be considered with things like the risks of repeated tissue biopsy procedure and of course the turnaround time.
  12. About curcumin (the supplement, not turmeric spice for cooking) and ginseng tea, the pharmacist warned me that curcumin had the potential to be an inducer and cause over-absorbtion which would increase adverse event risk. If you're just using a normal amount in cooking occasionally, that should be okay but check with your doctor. Turmeric's curcumin is very poorly bioavailable and clears out very quickly which you can get around via supplement form. They try to increase its bioavailability with black pepper or by a nano-sized water soluble formula. You'd have to eat a huge amount of its spice form to equal the supplement form. Regarding ginseng, the pharmacist recommended against taking it because they just know know for sure yet how it works in humans. The pharmacist said it could be an inhibitor or an inducer or it may clear drugs out too quickly, they just don't know. It's a theoretical reaction same with curcumin. Fyi, imatinib is another TKI drug just like tagrisso. MSK states: Imatinib: A case report indicates that P. ginseng may increase risk of hepatotoxicity (24). CYP3A4 substrates: Certain ginsenosides can induce CYP3A4 and may increase the clearance of substrate drugs. However, effects in humans may not be clinically significant https://www.mskcc.org/cancer-care/integrative-medicine/herbs/ginseng-asian Both curcumin and ginseng have mentions about potential to overcome TKI drug resistance in research papers. Best wishes
  13. I spoke with the pharmacist about dad's tagrisso and you can check with yours about what specific supplements you're considering. You want to be wary of cyp3A4 enzyme inhibitors which might mean absorbing too little of the tagrisso. Grapefruit is a known strong inhibitor. Many other herbal sources are also inhibitors to varying degrees theoretically but the pharmacist said if it's occasional and part of a normal diet to not worry about it. They're more worried about extracts in higher doses taken or things taken on a continual basis. Inducers may mean absorbing too much which increases adverse events. MSK supplements is a good resource to check.
  14. @Tom Galli I think the sequence change is due to scheduling more than anything, not for medical reasons. They approved the radiation plan today and they can take him tomorrow, but they don't offer radiation on weekends and Monday is a holiday. So it will be 2 on, 3 off, 3 on. My dad says they must be okay with it if they scheduled it like this, but if there's an advantage to continuous M-F, or at least starting next week so it'll be 4 on, 2 off, 1 on, then that's definitely something to consider. He wants to go tomorrow and I don't think I'll be able to reach anyway now. I wonder if I should leave things be, but I don't know enough about this topic. I did read that 5 or more interruptions was associated with significantly poorer outcomes, but that should be for people doing longer treatments. His will be only be 5 in total, and as you said, maybe palliative doesn't need to be continuous.
  15. Does anyone know if radiation should be given five days in a row vs started in the middle of the week with weekends off then resuming the second week? I've looked around and it says that the M-F schedule with weekends off protects cells, but I haven't found any five treatments done over two weeks information. They're giving this for dad's bone mets on a palliative basis. They gave us an appointment for tomorrow, so they seem to be okay with it but I'm just wondering if it's better to wait until Monday so he can have continuous treatments. Is there any advantage that the M-F gives vs the other option?
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