JHP
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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.
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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...
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@LilyMir Glad this was of help
IF has several types which include the one mentioned here and more which this paper talks about here.
QuoteInterestingly, SF (SF is a complete cessation of all caloric intake for a limited interval of time), CR, and a KD could exert radioprotective effects because healthy cells would more efficiently adapt to glucose starvation than cancer cells, which led to a concept of a “differential stress resistance” (37–39) (Supplemental Figure 1).
The rational explanation supporting differential stress resistance is that metabolism of healthy cells is censored by suppressive control checkpoints [Rb, p53, p21, phosphatase and tensin homolog (PTEN), sirtuin-3 (SIRT3)], and is thus more flexible than cancer cell metabolism, which lacks censoring mechanisms (40, 41).
Similarly to SF and CR, KDs induce chronic glucose starvation since, in contrast with normal cells found in healthy tissues (in particular, the brain, heart, and muscle), cancer cells cannot catabolize either exogenous (supplied by dietary intake) fatty acids or endogenous ketone bodies (derived from FAO and released by the liver) to produce energy (55,56) because they lack catabolizing mitochondrial enzymes [i.e., 3β-hydroxybutyrate dehydrogenase (3β-OHBD) and succinyl-CoA:3-ketoacid-coenzyme A transferase (SCOT)] (56).
Concerning the interest of protein/amino acid restriction, it must be noted that biosynthesis and proliferation of various cancer cells lines can be supported by other nutrients than glucose (i.e., glutamine), especially in case of glucose starvation (57,58). Starvation in amino acids can inhibit tumor proliferation, as shown by arginine (59,60), serine, glycine (61), or methionine deprivation (62). Interestingly, cisplatin-resistant cells appear to be very sensitive to glutamine starvation (63). Arginine deprivation can counteract cancer development because the molecule is a precursor of polyamines, NO, and proline. An arginine diet could be effective in many cancers knowing that arginine-succinate synthetase 1 (ASS1) is commonly reduced or lost in liver cancer, metastatic melanoma, renal cell carcinoma, platinum refractory ovarian tumor, and in almost 90% of sarcomas regardless of their subtypes (60).
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/
QuotePreclinical experiments suggest that a short period of fasting prior to radiation, and/or transient caloric restriction during treatment course, can increase tumor responsiveness. These regimens promote accumulation of oxidative lesions and insufficient repair, subsequently leading to cancer cell death. Due to their more flexible metabolism, healthy cells should be less sensitive, shifting their metabolism to support survival and repair. Interestingly, these regimens might stimulate an acute anticancer immune response, and may be of particular interest in tumors with high glucose uptake on positron emission tomography scan, a phenotype associated with poor survival and resistance to RT.
QuoteI am not sure how they go from observation of correlation to causation on a small set of patients in this study though. Also, looking at their diet, one wonders if such life is better than cancer, I mean how long can one tolerate brown rice and broccoli?
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/
QuoteShort-term fasting has been shown to improve chemotherapeutic treatment with etoposide [40], mitoxantrone, oxaliplatin [41], cisplatin, cyclophosphamide, and doxorubicin [42] in transgenic and transplant mouse models of neuroblastoma, fibrosarcoma, glioma, melanoma, and breast and ovarian cancers. Alternate day fasting has also been shown to improve the radiosensitivity of mammary tumors in mice [38, 43], likely due to enhanced oxidative stress and DNA damage during short-term fasting on cancer cells. Fasting has also been shown to control circadian clock genes, the expression of which usually oscillates at specific intervals throughout the day and is coupled to processes such as oxidative stress response and DNA damage repair [44]. Chemotherapeutic treatment administered at different times of the day has been found to improve efficacy, believed to be due to circadian rhythmic control of stress responses [45]. Fasting may therefore improve the efficacy of anti-cancer therapies in part by controlling the circadian rhythm.
From <https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-017-0873-x>
QuoteI recall hearing from a top researcher that they believe the best way to have a very long life is to eat half what we now typically eat.
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...
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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.
QuoteThe blood marker analysis included information from 99 people in the study. Overall, the fasting-mimicking diet:
- reduced blood glucose levels by 18.6%
- reduced blood insulin levels by 50.7%
- reduced insulin-like growth factor 1 (IGF-1) levels by 30.3%
Research shows that high levels of blood glucose and insulin are linked to a higher risk of a number of cancers, including breast cancer. IGF-1 is a hormone that helps support cell growth and development, including cancer cells. The researchers also reported results from a very early analysis of how the first calorie-restricted part of the diet affected the immune systems of 22 people diagnosed with breast cancer. This analysis was part of another ongoing study: the DigesT study.
For the DigesT study, the people followed the first five calorie-restricted days of the fasting-mimicking diet seven to 10 days before breast cancer surgery. The researchers compared:
- levels of tumor-infiltrating immune cells and activated immune marker genes in cancer tissue samples removed during biopsies before the people started the diet
- levels of the same things in cancer tissue samples removed during surgery after the people completed the first five days of the diet
The analysis showed that levels of tumor-infiltrating immune cells were higher after the fast-mimicking diet. There were also changes in the activated immune marker genes, indicating that the immune system was beginning to recognize the cancer as something it should attack.
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Quote
I'm not sure if things are moving fast enough, as she clearly needs something more fitting for the pain right now, and it doesn't seem there was any speak of a biopsy or meeting with a lung cancer oncologist or any oncologist yet. She thinks the surgeon will lead her to one after speaking with them Friday, but I'm not sure if things are moving fast enough at that rate since it seems up in the air. I might / probably will try to find a lung cancer oncologist in the Pittsburgh area to email today, to get things moving.
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.
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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.
QuoteFind out what she can take right now for reducing the back and rib pain so she can sleep properly at night (looking into CBD edibles or THC, doesn't matter, just anything that will help the pain that's not Aspirin or similar).
The doctor can prescribe oxy or other strong painkillers.
QuoteGet a biopsy scheduled to figure out exactly what kind of gene mutation she has as soon as possible to devise a treatment plan
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.
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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
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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/>
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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.
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@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.
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Justin, I am not sure how UK hospitals work, but after going through three hospitals here in the US with varying degrees of quality, my opinion is that the best possible hospital your insurance covers and that isn't too prohibitive time-wise is something worth going after. Especially for surgery. When I was wondering if we should accept a sooner appointment time for dad at the worse local hospital (that transferred him away initially) or go to a specialized center with a cancer center designation to begin his oncological care, someone from another board told me she got better care at a specialized facility after receiving poor care at the local hospital and she would advise everyone to switch if they could. The choice for dad came down to a good cancer center or a top cancer center hospital. Fortunately, the latter had an earlier appointment. Regular non-designated hospitals in the US rankings mainly score below average on how their patients fare compared to to specialized cancer centers. Waiting weeks to go to a better specialized place might not be worth the delay in urgent situations, but for long term care, it's definitely something worth looking into.
Just some of my observations...when my dad was first diagnosed via scans and they didn't know it was NSCLC, the local hospital said it could be sclc but only planned on tentatively biopsying it a week later. Btw, MD Anderson #1 hospital in the US can do next day treatments for SCLC. Then they held onto him for a week doing absolutely nothing before deciding they didn't have the specialists needed and transferred him to a different hospital for what in hindsight was a non-urgent matter. This delayed his oncological care by three weeks after diagnosis. At the top hospital he's currently at right now, their website says that SCLC diagnoses get seen same day. They do blood biopsies instead of tissue which means a 1 week vs a 2-3 week turnaround, plus blood biopsies are supposedly superior at checking for biomarkers. There are always oncologists, pharmacists, and nurses available 24/7 here, while at the other two hospitals, I was able to speak to one resident briefly per hospital after several days of waiting. He's been able to get same day CT and MRI scans at the doctor's request. While researching each place's equipment, I realized that the local hospital actually had the least amount of radiation machine types at their disposal.
In the SCLC material, they presented this miraculous case of a lifelong smoker granny who got whole brain radiation after many reoccurances and still had NED decades later. They are coming out with new advances all the time. Hang in there Justin. Whatever you decide, best wishes.
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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 significanthttps://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
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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.
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@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.
- Justin1970, LouT and Tom Galli
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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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I remembered your topic here and thought I'd share what I learned from the pharmacist. If you are taking tagrisso, you need to look out for interactions with the Cyp3A4 enzyme which affects the metabolization. https://en.wikipedia.org/wiki/CYP3A4
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Thank you Karen for your advice and encouragement.
I did the majority of intense mourning in the first two weeks of this month. It was two nightmarish weeks from the day hospital 1 told us it could be SCLC before they did a biopsy at hospital 2. At the current top hospital, he got a blood biopsy done the very first day and the biomarker results came out a week later. Lo and behold, the biomarker results from hospital 2's tissue biopsy done three weeks ago came out on the same day. And it seems that tissue biopsies are less accurate anyway. I read before that there are statistically signficant differences in outcomes based on the quality of the hospitals or ERs admitting the patients, but now I really have a first-hand view.
It is L858R and Tagrisso. I just noticed that you're using Tagrisso as well. The doctors seemed to be cheered by the news. There is the implication that if this works it will be longer than the original average prognosis (given assuming he didn't qualify for immunotherapy and could only start chemo). The Tagrisso websites show the improved median results for Stage 1-3 compared chemo, but they don't give any stage 4 data. There's still a lot of reading I need to do.
There are so many unknowns. All I can do is not let what hasn't happened affect the present moment.
Best wishes to you
- LouT, Justin1970 and Tom Galli
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Radiation ended up not being necessary after all. They're only planning on palliative bone mets radiation right now but otherwise it will be targeted therapy. They told us he is EGFR so that is the best news that could be possible in this situation. Which is true, he will get to try the medical advance of this decade.
The radiation oncologist asked me specifically, why aren't you smiling? Of course, I obligingly smiled. If my mask was off, people would think I was the Joker. He also said it's so rare, it's really fortunate to find this mutation. To which I asked is it really rare? Don't almost half of the Asian population with NSCLC have it? [I saw this in one of the lungevity talks where they said this mutation was more common in the Asian population whereas with Nordic? ones it was less than 10%] He turned red, laughed, and said yes. I didn't mean to put him on the spot, that was an automatic reaction. Neither the radiation oncologist nor the medical oncologist mentioned the 5-7% transformation chance or how long on average this medication could work, and I didn't want to ask in front of my dad. He could do with some hope. I have to work on being grateful. A month ago before the biopsy, the doctors at the local hospital originally said it could be SCLC.
I think I know too much; I don't wish to know less though. This past month the words someone said on the news in the aftermath of a great tragedy kept echoing in my head. They said I have to move on no matter what because everything ends in this life (Buddhist meaning). That thought makes you live in the present but tinges every moment with terrible sadness. While reading, I stumbled on another way of thinking that will be more helpful for the present situation.
"I cannot defeat the fear of death. However, death, the cause of that fear is in the future. The future is merely an illusion that doesn't exist yet. If one does not imagine the next moment, then any human can jump off a cliff."
Of course, I did not share these thoughts with dad who earlier said no thanks when I created a powerpoint to go over the material the doctor said. He doesn't want to know too much. I respect that.
Here's to hoping the medication will be effective for decades and decades. They say with all the mRNA advances, a cure could be possible in this decade.
- Tom Galli, LouT and Justin1970
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We were given a prognosis of an average 2 years due to the various mets. She said there's no reason not to have hope, but this can't be cured. The doctor used the word average, not median. He's not a candidate for immunotherapy due to low PD-L1. The liquid biomarker test results will still take week to be out, so I am praying desperately that targeted therapy will be possible. He's not a candidate for any clinical trials since he can't walk right now, but the vaccine clinical trial I asked about was not open. When I helped them check out, I saw my mom helping my dad put on his coat in the wheelchair from across the room and suddenly I wanted to cry.
- LouT, Justin1970 and Tom Galli
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Thanks @Tom Galli and @LouT for your advice. I feel more sure about this choice now. I did not know about the physicist part, but I did suspect it would not be easy to switch doctors mid-way.
I discussed this with them and their decision is of course we're going to go with the best doctor we can get. At least we can put the what if we got a better doctor question to rest, because the what if this had been treated sooner boat sailed about 2.5 months ago. It's only a few days worth of difference. Hopefully when the compression massager arrives that will ease his pain. He was fine in the hospital without pain meds as long as the massager was running all day, but without the massager he had to take the oxy they prescribed.
- Tom Galli, LouT and Justin1970
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The gears are rolling after discharge. They were going to keep him longer and make him miss his appointments, but after I communicated with them about the misunderstanding, he was discharged in hours. That was the fastest they've ever responded since admission. I was promised a call with someone on the team about the biomarker test a week ago, it'll just be quicker to ask the next doctor. Everyone means well, but they are not in a hurry. He has medical and radiation oncology appointments scheduled at the top hospital, transport arrangements to his appointments, his medical equipment is now acquired, PT is in the works, and compression massager will arrive next week since he was using them at the hospital.
I just have some lingering doubt about should I try moving things even quicker. The radiation oncologist assigned is extremely experienced in dad's relevant mets issues, has all the titles and research background, teaches, and is one of the dept chairs. In terms of pedigree, he doesn't lose to any of top places elsewhere. Given that he will be designing the radiation plan, I really think this doctor should remain our choice. I'm going to call to see if there is an earlier opening probably every other day for the next week for this doctor...but if the choice comes up, should we just make a choice with a different doctor to see them earlier? They are still a top hospital doctor...so they will be more or less excellent. I guess one con about that doctor that compared to other younger doctors is that he might not be very available to contact...
It's just that dad has been in pain for two months. He is complaining about pain through the night and mom has to stay up to take care of him. She hasn't sleep a full night since this started. The pain is supposed to decrease with just one radiation treatment, and it takes anywhere from 1-7 days after this appointment for them to arrange the radiation start. At most, changing doctors will make this process quicker by a week. Is it worth it?
- Tom Galli, LouT and Justin1970
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@Judy M2He has but the results have not come out yet. I tried asking if this was common or comprehensive, but he doesn't have an actual oncologist assigned to him there. It's someone on the team who can be consulted, but that person has not been reachable for the two weeks he was there.
- Justin1970 and LouT
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1 hour ago, Judy M2 said:
I know that people do use FenBen but others are adamantly opposed.
Regarding keto diets, I was on one for most of 2019. Then I was diagnosed with Stage IIIB EGFR+ NSCLC in October of that year. That diet did nothing but mask the real cause of my weight loss. After undergoing radiation and chemo and now targeted therapy (for almost 3 years), I am NED and back to good health. The only supplements I take are what my primary doctor recommends for other conditions (like osteopenia). I'm skeptical of claims about both sugar and supplements, and in fact some supplements can interact with targeted therapy drugs.
Sorry to hear that. Congratulations on NED!
The science is definitely still out regarding keto. Don't mean to imply that I thought keto is good, just that they have been aware of the glucose mechanism since a long time ago. Personally, I think keto's claims are overrated.
There is a lot to be said about the role of glucose and pathways though whether it is through using caloric restriction, fasting, drugs, and to a lesser degree supplements. Yes, I've also researched the drug interactions, and I will be sure to check. Who knew taking antioxidant supplements during therapy was bad because it lowers the effectiveness of the drugs which work via oxidation?
I am sure some people do fine just with conventional treatment, but some people, especially those in Stage IV, want to improve their odds. I've already gotten turkey tail and reishi for my dad and studies out say taking is better than the non-taking control. They're standard adjuvants in the Old Country for anyone who can afford them. Sadly, some rare stuff is out of my $$$ reach.
Integrative Medicine or Alternative Therapies
in GENERAL
Posted
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.