How are people with liver mets doing?

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  • lulubee
    lulubee Member Posts: 903
    edited June 2018

    Hey Z, I think of you often as well and I try to keep up with your shenanigans! It's Taxol for me, and yep, I'm at 18 months now. What a time to be alive. LOL.

    Thrivingmama, good advice. It's important to be gentle with our embattled bodies, for sure. I am curious what you have landed on to support your liver. I'll steep some dandelion tea for us all if you'll spill the beans. ;-D

  • Kattysmith
    Kattysmith Member Posts: 688
    edited June 2018

    When I was diagnosed with liver mets in April, I thought immediately about taking Milk Thistle as a supportive measure, but was reminded through some reading that it is estrogenic. Since I'm ER+/ PR+, I shelved that option for myself, at least for now.

  • Frisky
    Frisky Member Posts: 1,686
    edited June 2018

    good morning everyone!

    Blainej— thank you for your explanation. i measure my BS two hours after a meal and try to achieve around 120 but it's impossible if I eat a carb rich meal and don't take 1000mg of metformin with it. When I measure in the morning, sometimes I'm around 100 but a lot of times is a bit higher. Afinitor wreaked that delicate balance and I was measuring around 200 two hours after the same type of meal and 130/140 before I ate anything. That was the number one reason to ditch Afinitor, it was so destructive to my system.

    I too use fats to curb my sugar cravings. The one you described is very powerful, but my favorite is a glass of frozen tiramisù that I make with eggs, stevia, and imported mascarpone cheese, flavored with vanilla beans and dark chocolate shavings. That provides a level of fullness and satisfaction that is hard to achieve otherwise. The eggs have to be separated and beaten into airy frothy frenzy that turns the concoction into the richest ice cream known to mankind. The ration is one egg to 2onces of mascarpone.

    Z— thank you for all that information and reference material about cancer and nutrition. I will look at it carefully. You're absolutely right about the danger of the insulin spikes, but unfortunately for some of us with insulin resistance it's kind of too late. The difference between simple and complex carbs no longer makes much of a difference in keeping insulin and sugar levels low. It's question of quantities, therefore the wisdom of intermittent fasting, and measured amounts and carbs in relation to fiber and fats.

    I take 600 mg of NAC daily to support my liver, in addition to around 60 other supplements as prescribed by the infamous MO Nicholas Gonzales before he left this reality, does anyone knows if I shouldn't take the NA?

    This naturopath MO has conducted a study on the effect of sugar on cancer patients.
    https://natureworksbest.com/blog/2014/05/27/sugar-feeds-cancer-growth/

    Sugar: The Fuel That Feeds Cancer Growth

    Sugar and Cancer is There a Connection?

    In Conclusion

    Consuming sweetened foods (other than stevia sweetened foods) made a significant difference in patient outcome across both all stages and all types of cancer among patients presenting to our clinic. Therefore, we recommend that the diet of cancer patients not contain sweeteners other than stevia.


  • Scout-a-bout
    Scout-a-bout Member Posts: 24
    edited June 2018

    Hi Folks-if I recall correctly Babs did participate in GDC-0077 as I did. They expelled me after eight weeks stating I had progression in my adrenal glands that has not shown up on any on Scan. I had terrible hyperglycemic side effects, where it took 4 oral meds to control, and the fatigue was profound. I actually have a significantly better quality of life on Abraxane. Hoping to see other meds targeting this cell mutation in the near future.

  • blainejennifer
    blainejennifer Member Posts: 441
    edited June 2018

    MM,

    If you hear a knock at your door, it's me, asking for the tiramisu recipe. Sounds amazing. I could probably figure it out by what you posted, but if you are in the mood to post a step-by-step, I'd be so grateful.

    Jennifer

  • zarovka
    zarovka Member Posts: 2,959
    edited June 2018

    Miaomix - I stopped almost all supplements (except milk thistle, fish oil and a multivitamin) while my liver was severely impaired. I did not want to risk stressing it. I was too stressed to research which ones might be a problem, so I ditched 90% of them.

    Recently, in the last break between fasting/FMD, however, I gained weight eating veggies oils and whole grains. Clearly, my liver is in fine form again, making the most of every frickin calorie. Time to supplement again. Returning to my supplement routine. It is not as extensive as yours, but it does include NAC.

    I totally forgot why I was taking NAC. So, since you asked, I looked at some papers. The effect of NAC on the liver is well researched. NAC lowers liver markers and generally supports liver regeneration. In this paper, they gave NAC in high dose IV form to patients with liver failure and cut the mortality rate in half. I need look at it some more, but in hindsight I feel I probably should not have dropped the NAC while my liver was impaired. I am definitely taking it now. GREAT QUESTION. Thank you.

    I have no familiarity with insulin resistance, so all your points are well taken. What a challenge!! You have solid data on how what you eat effects you because you can measure your glucose levels ... and you do. Nice work managing your diet with data... hat's off I couldn't do it. I have one of those devices from a brief study I participated in, I can't prick myself regularly.

    Everyone can agree added sugar/simple sugar is a bad idea for cancer patients, although different folks come to the conclusion in a different ways. Eat your veggies and good (fish, olive, nut) oils ladies ...

    >Z<

  • zarovka
    zarovka Member Posts: 2,959
    edited June 2018

    Well this is interesting. You can order pretty much any blood test you like through online labs, including CBC CMP and TMs. I found two with a quick google. I had no idea ...

    https://www.walkinlab.com/

    http://requestatest.com

    You have to get a blood draw by a phlebotomist, but my local lab will do that for free.

    >Z<


  • hartrish
    hartrish Member Posts: 290
    edited June 2018

    so how much NAC do you take?

    Also, I found out ALA binds with metals so if you are taking a metal based chemo like platinums(carbo, cis) you probably do not want to take for a couple days prior to and after your infusion

  • cure-ious
    cure-ious Member Posts: 2,869
    edited June 2018

    Hi Scout,

    I agree, hope they can find the drug to inhibit that enzyme, however the hypoglycemia is a direct effect of the drug hitting its target, so I guess that will probably always be a side effect, unless they can find a drug that does not touch the normal cells but only hits the cancer ones which have the mutant enzyme. Until then, we are stuck with affinitor as the only drug available in this category. The GDC-0077 results have yet to weigh in, perhaps there will be a bigger benefit, but the blood sugar is a big problem for these drugs. For what its worth, they say even people on it a short period of time benefit because it does rapidly degrade the mutant PI3K, and causing your cancer to go back to being estrogen-dependent.

  • cure-ious
    cure-ious Member Posts: 2,869
    edited June 2018

    Scout-how long since your stage IV diagnosis? (surely not 2003) and what else did you have before GDC-0077 and Abraxane?

  • zarovka
    zarovka Member Posts: 2,959
    edited June 2018

    So, here's some news out of ASCO ... NKTR-1 is a more tolerable form of Interluken-2 that clearly improves the performance of PDL-1 inhibitors. Interluken is nasty stuff but it looks like they found a more tolerable and possibly more effective form ...

    Aldesleukin, recombinant human IL2, is an effective immunotherapy for metastatic melanoma and renal cancer, with durable responses in approximately 10% of patients; however, severe side effects limit maximal dosing and thus the number of patients able to receive treatment and potential cure. NKTR-214 is a prodrug of conjugated IL2, retaining the same amino acid sequence as aldesleukin.

    Very early results, and not in ERPR+ MBC but ...

    In a group of 13 melanoma patients, treatment with NKTR-214 and Opdivo demonstrated a impressive tumor response rate of 85 percent. That means 11 of the 13 patients responded.

    The companies enrolled another 15 melanoma patients, and the response rate dropped. In the update, 14 of the now 28 treated patients (50 percent) showed significant tumor shrinkage. That means only three of the 15 added patients responded; however, the patients enrolled later in the study have not been followed very long. When they are, the companies expect more tumors to shrink, boosting the response rates.

    The study presented at ASCO on Saturday night also included a group of patients with kidney cancer. Here, the initial response rate was 64 percent. Seven of 11 patients responded. But then 15 more kidney cancer patients were enrolled and the response rate dropped to 46 percent. Bristol and Nektar expect tumor responses are expected to get better over time.

    The companies also pointed to data presented Saturday showing NKTR-214 may trigger tumor responses in so-called PD-L1 negative patients who don't typically respond to Opdivo alone. Five of 12 melanoma patients with PD-L1 negative tumors (42 percent) responded to the combination of NKTR-214 and Opdivo. For the 17 PD-L1 negative kidney cancer patients, the response rate was 53 percent.

    Lisajo - the articles discuss kidney and renal cell cancer but most NKTR-214 trials accept TNBC patients. I have not dug in to side effects. That is a BIG question. Death is one of the possible side effects of Interluken ... Interluken is one tough treatment. TNKTR-214 is significantly different, but in that same class of drugs.

    >Z<

  • thrivingmama
    thrivingmama Member Posts: 133
    edited June 2018

    lulubee - happy to share what I land on and why. I am still waiting for some test results to come back and then I will take a holistic look at all of my supplements, herbs, etc. So, I'll get back on here once I've decided. Things I am taking (not necessarily for liver support): probiotics, vit D, vit B, CoQH, curcumin, magnesium, reishi, and cordyceps (I believe cordyceps in particular are good for liver support). Considering sulforaphane, r-lipoic acid, milk thistle (which was recommended NOT to take), green tea extract (recommended NOT to take). Again, this is all so specific to each person... but always helpful to learn what other people are using or have considered!

  • Celebrate_Life
    Celebrate_Life Member Posts: 76
    edited June 2018

    Such good discussions everyone about liver support. Thanks for picking me up off the ground.

    You are an awesome group of people!

    Therese

  • momallthetime
    momallthetime Member Posts: 1,375
    edited June 2018

    thrivingmama the question i always have is how do you know what vitamins or herbs.

    All the info here from all of you knowledgeable ladies, is just priceless. I just get so upset thinking Dani didn't have any opportunity to take a/t to help her liver. Doc did not take her symptoms seriously. She also had this damn bladder hemangioma that took time out from her being able to concentrate on what she needed to do for her liver. And to think she had that because of her life saving chemo years ago, at the beginning. She really got the short of e/t. The pain she had. I so wished that we knew of all these helpful hints. (it's just me sounding off)


  • cure-ious
    cure-ious Member Posts: 2,869
    edited June 2018

    Mommatt, I know its so sad, but ain't none of us out of the woods at this point...

  • Frisky
    Frisky Member Posts: 1,686
    edited June 2018

    Aaaahhhh the plot thickens!! More correlation is being found between cancer and funguses. Go Simoncini!!!


    Antifungal drug kills dormant colorectal cancer cells

    In experiments conducted on mice, Dr. Buczacki and team found that the antifungal drug may be able to trigger the death of a type of colorectal cancer cell typically immune to treatment.

    These tumor cells are found in a state of inactivity, or "dormancy," so they do not respond to the usual therapies, such as chemotherapy, that target and destroy active cancer cells.

    So, even as a treatment is effective in destroying most malignant cells, these dormant units will remain unaffected, putting the person at risk of having a recurrence of the cancer later on.


    From Cancer Research, a Flipboard magazine by Adam Warlock

    Colorectal cancer is the fourth most commonly diagnosed type of cancer in the United States. Though various treatments are available for it,…

    Read it on Flipboard

    Read it on medicalnewstoday.com

  • zarovka
    zarovka Member Posts: 2,959
    edited June 2018

    Hartrish - The oral NAC dose in this study was 600mg twice per day. That is twice the recommended dose on the product I use. Participants also did IV NAC which is much higher. NAC is an anti-oxidant, so if you are on chemo where one of the mechanisms is oxidative stress, you might drop the NAC around the day you receive treatments.

    Miaomix - Interesting stuff. That study was on colorectal cancer. I never know how much research on one type of cancer translates to MBC.

    >Z<

  • Frisky
    Frisky Member Posts: 1,686
    edited June 2018

    Z— I think those recent findings are relevant because it could lead to finding the cause also for breastcancer.

    Some scientists think there is a connection between cancer and a yeast or fungal overgrowth known as Candida albicans -- and sugar affinity is likely the common denominator between them! For years, researchers have known that bacterial and viral infections caused several types of cancer, so it may not be so farfetched to stretch causation to fungal overgrowth. And from there, we have another powerful argument linking sugar and cancer.

    For example:

    1. Both cancer and Candida feed on sugar.
    2. Both grow and reproduce only in anaerobic (low oxygen) environments.
    3. Both need an acidic environment to survive.
    4. When you probe cancer cells within the human body, they appear white in color and uneven in texture just like yeast.
    5. As the use of antibiotics in our food supply and consumption of sugar increases, so are the rates of all cancers


    The rise of cancer rates over the last 80 years could be due to the modern carbohydrate-rich diet. Carbohydrates in the form of processed white sugar, refined flour, high-fructose corn syrup and other foods with high-glycemic counts feed the yeast fungus so that it grows rapidly and disrupts the normal balance of good and bad flora, lowering immune response

    Over the years, many researchers have documented the co-existence of cancer and a specific fungal overgrowth known as Candidiasis ( Candida albicans ) with correlations of 79% to 97%. At least 10 other researchers suggested a causal link between Candida and cancers of the larynx, lung, esophagus, tongue, intestine, pancreas, and lymph system.

    Cancer and Infections

    Research has long shown that infections by microorganisms can contribute to or even cause cancer. In 1994, the International Agency for Research on Cancer classified the bacterium Helicobacter pylori (H. pylori) as a carcinogen, and since then it has been increasingly accepted that colonization of the stomach with H. pylori is an important cause of gastric cancer.In 2003, Danish researchers linked the Epstein-Barr virus the cause of mononucleosis, to a malignant lymphoma known as Hodgkin's disease. Human papilloma virus (HPV) is known to cause cervical cancer and some oral cancers. In 2012, scientists at the University of Liverpool identified a type of Escherichia coli (E. coli) bacteria that is linked to the development of colon cancer . And Hepatitis B virus (HBV) is a proven cause of about 80% of liver cancer (primary hepatic carcinoma).

    Maybe, just maybe, candida creates an environment in which all sort of viruses can thrive. Ultimately what makes this very upsetting, is the reality that even if this correlation was conclusevely proven, we still don't have any means of fighting candida, can only be managed, and maybe stage four means is systemic. But could changing our diet and supplementing with naturali antifungal unknowingly help our plight? I don't know, but it might be worth a try....

  • zarovka
    zarovka Member Posts: 2,959
    edited June 2018

    That was kinda my take away ... the only way to manage candida is diet, but I don't know much about candida and what diet would help. If it is basically the same diet as the consensus cancer diet, as I suspect, then there is one more reason to double down on diet. I will say that anytime I see the phrase "cancer feeds on sugar" it's makes me suspect the rest of the story, sources and research. It is a sort of true statement, but grossly over simplified and misleading. All cells feed on glucose. If there is sugar around, and there always is, cancer cells do a better job of commandeering it and will take resources from normal cells. Cancer will go as far as eating normal cells to get nutrients. There is no way to starve cancer of sugar.

    That said it is harder for cancer to get nutrients if they are pickled in glucose. A piece of my strategy is to stress the cancer temporarily with low blood sugar. I am mid-fast at the moment, get my chemo today. Heading to IV with low glucose levels that I hope are stressing the cancer and making it more susceptible to chemo. Low glucose should also be causing my normal cells to nap, waking occasionally to enjoy a light snack of their own broken parts (autophagy). Since the normal cells aren't growing or metabolizing much, they may be less sensitive to the chemo. I have referenced research in previous posts that shows that brief interventions to lower blood sugar may help sensitize cancer to chemo and protect normal cells. However, long term you can't stop eating carbs. Cancer cells get what cancer cells need even if they have to eat the normal healthy tissue around them ... see cachexia. It is the normal cells that suffer. The basic cancer diet is a healthy balanced diet that focuses on feeding the normal cells.

    The article you post then goes on to focus on refined sugar as the problem ... and that makes sense. Elsewhere the terms are unclear and by my read they conflate complex carbs and refined sugar and blood serum glucose levels. There is a complex relationship between these very different forms of carbs and with cancer. But if by sugar they mean cotton candy then, yeah, zero refined sugar.

    There is a lot going on in that article ... every sentence would require a research paper or 4 to substantiate. I wish they had really focused on the cause and effect of the fungus relationship and provided references. My gut is that you are right about the fungus/cancer relationship. Whether there is cause and effect, I am not sure. Cancer does require a certain environment. It may be the same as what is required for fungus. Does that mean fungus causes cancer such that an anti-fungal would kill the cancer ... ?

    >Z<


  • Scout-a-bout
    Scout-a-bout Member Posts: 24
    edited June 2018

    Hi Cure-ious - initial dx of bilateral breast cancer in 2003. ER/PR 100% positive Her2(-). Dx in 2013 with bone mets, letrozole was the treatment. Bone marrow infiltration in 2016, Faslodex and ibrance was the treatment. Liver mets dx in November 2017. Tried the gdc-0077 trial for eight weeks. When they expelled me, I started and am currently on Abraxane

  • Frisky
    Frisky Member Posts: 1,686
    edited June 2018

    Z— it's not about eliminating carbs in general. It specifically mentions: Carbohydrates in the form of processed white sugar, refined flour, high-fructose corn syrup and other foods with high-glycemic counts feed the yeast fungus so that it grows rapidly and disrupts the normal balance of good and bad flora, lowering immune response, and aren't these the same culprits that are also involved in other horrible diseases such as diabetes and Alzheimer which they call type three diabetes? In view of some of these findings isn't logical why your modified starvation diet would work so well during TX?

    There's just too many coincidences.

    I will continue to investigate this angle because it empowers me while continuing my current standard TX that as we all know wil fail me at some point.

    Just today fresh off the presses: A new study funded by the American Cancer Society has found that colorectal cancer rates for Americans between 20 and 29 years old have been rising at a surprising rate. The cancer typically affects adults over the age of 50, however since the mid-1980s, rates have been dropping for older adults—ages 50 and over—but rising in younger populations, and rising fastest for people in their 20s.

    As the researchers explain, "specific, unhealthy dietary elements, like high–glycemic load carbohydrates, may trigger a cascade of detrimental health effects beyond caloric content."

    So there you have it...one could also call it the feed thecandida diet....

  • KPW3
    KPW3 Member Posts: 127
    edited June 2018

    I'm looking for opinions....Abraxane has stopped working. My next treatment will probably mean a decision between:

    1. NCT02983045-

    A Dose Escalation and Cohort Expansion Study of CD122-Biased Cytokine (NKTR-214) in Combination With Anti-PD-1 Antibody (Nivolumab) or in Combination With Nivolumab and Anti-CTLA4 Antibody (Ipilimumab) in Patients With Select Advanced or Metastatic Solid Tumors (PIVOT-02)


    2. NCT02513472-

    Study to Evaluate the Efficacy and Safety of Eribulin Mesylate in Combination With Pembrolizumab in Subjects With Metastatic Triple-Negative Breast Cancer (mTNBC)

    One is close to my hometown and the other is at Dana Farber.

    Thoughts?

  • MJHJAN1014
    MJHJAN1014 Member Posts: 622
    edited June 2018

    Hello, piping in about the Candida issue. I guess I've never had a clear understanding of systemic overgrowth of Candida. It definitely can happen in elderly or immuno-comprimised individuals esp. after bacterial or viral infection and prolonged antibiotics. When it shows up in blood, sputum and urine cultures, this patient is really sick, and on heavy anti fungals. Have a hard time getting my head around people walking around with candida predominating. it is among normal flora in the gut and vaginal canal, but I'm unaware that it or any bacteria just normally hang out in organs. I'm with you Z, on the the fact that "sugar feeds cancer or Candida in the body" being a very oversimplified statement. Best, MJH

  • zarovka
    zarovka Member Posts: 2,959
    edited June 2018

    KPW3 -

    I just posted about the trials combining NKTR-214 with PDL-1 and CTLA4 inhibitors above. It's worth reading. They are getting spectacular results in small populations. They have not reported results with MBC patients who typically express PDL-1 at low levels. However, PDL-1 expression is transient and they don't measure PDL-1 on white blood cells (they biopsy cancer cells). The later may be important. I'd have questions about efficacy in TNBC patients ... the trials allow TNBC patients but they are not reporting results for this group. I'd have questions about side effects. I have not seen side effects reported. They have had 60-100 patients on this drug, they have reports on side effects and a responsibility to be transparent ... push that one hard.

    The second one which combines Halavan and Keytruda is another great idea. Barbara Bigelow is a MBC patient on Facebook who entered that trial 22 months ago. She went into remission and remains in remission to this day. She is in the Closed Metastatic Breast Cancer group. You need to join and then search for her posts. She had a strong immune response and got very sick, but it worked.

    Two great options, IMO!!! You have a GREAT doctor who would propose these two winners. We want to know everything you learn, please.

    >Z<


  • KPW3
    KPW3 Member Posts: 127
    edited June 2018

    Thanks >Z<

    I've read both clinical trials and NCT03435640 (added NKTR-262) which isn't yet available here in the Northeast....although coming in the summer according to NEKTAR; but I'm going to need to start something ASAP. Whichever one I try I wouldn't be able to participate the other in the future due to the Inclusion/Exclusion Criteria in the trials. My DH wrote this to me in an email answering one of my questions:

    Over the weekend at the ASCO meeting, preliminary results from NKTR-214 + nivolumab were presented. This is the one that Tolaney
    said was looking very good when we last saw her. Now there are more patients and more preliminary data. Side effects were mostly
    tolerable in 162 patients. The most common was flu-like symptoms. Overall response (complete response or partial response) was
    about 52% in 60 patients with all types of solid tumors; 78% had at least a stop in progression. They only reported on 3
    triple-neg BC patients, so the BC data is very sparse and hard to make much of. Of the three, one patient responded and two did
    not. Its odd that they only had data on 3 BC cases; not sure why that would be.
    Source: http://abstracts.asco.org/214/AbstView_214_217651.html
  • Grannax2
    Grannax2 Member Posts: 2,387
    edited June 2018

    Ladies, you are too deep for my brain today!

    Does anyone know what the average length of time of no uptake after y90 is? I’m one year out and still no uptake. Maybe there are no studies on that subject.

    I figure if anyone knows, it would be one of you. Thank

  • momallthetime
    momallthetime Member Posts: 1,375
    edited June 2018

    Grannax too deep for me too. Super interesting but my brain is fried.

    Z i saw Dr Longo's video very interesting indeed, but then i went further and saw this

    video, and it really left me confused, if i understood he's even saying that maybe his diet should bot be followed in on itself? At the end...

    And what exactly do you do on your fasting days? Just water? It's fascinating, but complicated.

    Miao you will never believe, but i am taking Phospadilseryne for well over 1 week, and my mind is in terrible shape. Do you think i am beyond help. I could be talking to you, or just have heard something and not even have a clue of what is was about.


    https://www.washingtonpost.com/news/to-your-health...

    This makes me very mad. I don't trust them. Very similar to the idea when they were trying to tell women not to get mamograms so often, and the age should be over 50. In the same article, there is another video re: prostate cancer, how they told men that there is no real need to have early or often PSA tests, and DER and bam now they are saying that most cancers are being seen in advance stage. I'm so sick from this game. Saying that women will be spared chemo, and oh it's terrible side effects, it makes me sick. Yes, but they will prefer to be alive many years later. The same idea as before, saying how horrible for all those women that had to wait for results of mammos and biopsies, of false positives, oh give me a break, i go through that, i had biopsies etc.. we all know there is much worse things than that anxiety. Now they messing with all these women, maybe the ones with the low Oncotype maybe but for the ones in the middle, they gonna play roulette and then we'll hear about it in a few years, how they thought they could do away with chemo but NOT.


  • Frisky
    Frisky Member Posts: 1,686
    edited June 2018

    Doctors hail world first as woman's advanced breast cancer is eradicated SillyHeart

    "It feels miraculous, and I am beyond amazed that I have now been free of cancer for two years," Perkins said.

    i'm sure this news will please everyone! Time to rejoice for Judy Perkins, may she be the first of many. although experts caution that the treatment has only proved itself in one woman and that the clinical trials are needed to see how effective the therapy could be in other cancer patients. Researchers point out that while the treatment could in principle work for many different kinds of cancer, it will not help everyone.

    Regardless, if you've been stashing some bottles of Veuve Cliclot, Russian caviar and blinis, candida be damned, now it's the time to pop them open! I'm going out to get a few bottles myself....Loopy

    https://www.theguardian.com/science/2018/jun/04/doctors-hail-world-first-as-womans-advanced-breast-cancer-is-eradicated?CMP=Share_iOSApp_Other

    Immune cells from the woman's own body used to wipe out tumours

    Jessica GlenzaLast modified on Mon 4 Jun 2018 12.24 EDT

    A woman with advanced breast cancer which had spread around her body has been completely cleared of the disease by a groundbreaking therapy that harnessed the power of her immune system to fight the tumours.

    Doctors who cared for the woman at the US National Cancer Institute in Maryland said Perkins's response had been "remarkable": the therapy wiped out cancer cells so effectively that she has now been free of the disease for two years.

    The doctors treated Perkins by injecting 80 billion of the carefully-selected immune cells into her body. The therapy was given alongside pembrolizumab, a standard drug that can help the immune system to attack cancers. Tests after 42 weeks showed Perkins was completely cancer free. She has remained so ever since.



    image

    Z— how is this procedure different from the one you underwent in Japan? Was it just the lack of keytruda?did she get the keytruda because she was estrogen negative?

  • zarovka
    zarovka Member Posts: 2,959
    edited June 2018

    Mom - I did not quite parse your post, but I did watch the video. At the end Longo says that after observing people attempt the Fasting Mimicking Diet (FMD) by themselves and not doing it right, he does not feel anyone should do the FMD by themselves. I am guessing that is the comment you refer to?

    Vongo feels you need to use the Prolon system from L-Nutra to do the FMD. That may appear self-serving (he owns L-Nutra); however, I agree with him. He donates all the proceeds from L-Nutra but whether he makes money or not, I would never try to recreate it on my own. I will say that I have done the FMD using the Prolon system three times now, so that comes from personal experience.

    Vongo describes the principles of the FMD in his book: a brief (~5 day) period of restricted calories (<800/day) low carb, low protein, high fat. In principle, it's should not hard to do on your own but it really is. The problem is that what you have to eat is so specific, so limited and not particularly easy to prepare.

    I "fast" before and after chemo in two different ways. I either do the 5 day FMD (3 days before chemo, 2 days after) or a true 4 day water only fast (2 days before chemo, one day after). A water only fast is not hard to execute properly on your own, but the transfer from glycolysis to ketosis is harder. In clinical trials, they had poor compliance ... many people did not complete the water fast and they could tell that some people who said they did were not compliant from their blood work. I don't find the 4 day water fast so difficult that I cannot do it, but it is hard. The transition from glycolosis is much easier on the FMD, but it takes 3 days rather than 2. The pluses and minuses of the different strategies more or less balance out. So I end up alternating ... often my chemo schedule drives the decision.

    In most respects, I feel better on this chemo/fasting regime than I did prior to cancer and cancer treatment. Granted I am on Abraxane which is one of the most tolerable chemos and I am not without side effects. Fasting did nothing to prevent hair loss, I have muscle weakness, weird rashes and trouble healing wounds. However, I have energy, I am alert, very active and focused. In the trials, the protection of the digestive system is the strongest effect they see. There are improvements across the board in all side effects, but digestive issues dropped to zero in all patients regardless of the type of chemo. I have no nausea/vomiting or other digestive issues. That alone is game changing because it allows me to eat well. A good diet, but above all being able to absorb the nutrients in that diet, is the cornerstone of staying well. I feel great and I have no trouble maintaining weight despite the fasting.

    It's a good video. A fair portion of it addresses the high protein vs low protein diet discussion we have been having here...

    Miaomix - The diagram as it does not specify the type of immune cell involved. If I were to guess that diagram is attempting to describe the famous Tumor Infiltrating Lymphocyte trial at the NIH. It is run by Dr. Rosenberg who is called the father of Immunotherapy. I know a couple women with MBC who have done that and are in remission. I also know a couple of people who did it and promptly had progression. There have been a couple patients who died. They have tweaked the protocol and they are more selective about who they accept. I have not heard of anyone dying in that trial lately, but it is still one tough therapy.

    All that said, given our position, it is a shot at remission that is reasonable to consider. I did Natural Killer Cell therapy and Dendritic Cell Vaccines. The former is not practiced here, the later is pretty common in clinical trials. Vaccines are taking off here, although MBC is currently not driving the research. Neither have anything in common the TIL trial/strategy. There is as much variety in immunotherapy strategies as there is in all other cancer treatment strategies combined. The range of approaches make using the term and discussing immunotherapy generally very challenging.

    KPW3 - Thanks for the abstract. Hang on to that husband!! If NKTR-262 is not available, look into Halevan and Keytruda. Just ask about side effects ... demand data. And make sure that information informs your decision. I

    >Z<



  • Tennille76
    Tennille76 Member Posts: 79
    edited June 2018

    Hi all, Just completed 1st cycle of Abraxane. Tumour markers dropped by 150 points and my liver is functioning as a normal liver although had a fair amount of mets.

    As far as supplements go: I take 5 vit D tabs, 4 extra strong fish oil, 2 extra strong tumeric, 1 35000mg milk thistle, apple cider vinegar, basica (which alkalines the body), extra strength glucosamine and a candida strength probiotic every single day.

    With the combination of chemo, supplements and prayer I hope to get cancer under control. I am currently very healthy and feel most days like I dont even have cancer even though I am riddled from scalp to knees. My liver is the only 'life giving' organ involved. Side effects of Abraxane at this stage are pretty much nil.

    Will always accept new suggestions on what I can do better though.