J. Trowbridge

[Trowbee]

I’m a 60yo male and have been diagnosed with lung cancer in august of 2021. My family doctor ordered a ct scan of my chest in June of 2021 due to weight loss. The ct scan showed a 9mm nodule in my upper right lung. I was then referred to an oncologist who ordered a PET scan that showed a 1cm in September. I was sent for a biopsy but one could not be done safely due to its proximity to the aorta. I was then sent to a surgeon who would ultimately perform a wedge resection of the lung in Nov of 21.  Post surgery showed malignant carcinoma but lymph nodes showed no cancer in the area. I was considered cancer free at the time going for ct scans every 6mos. My first one in June of 2022 showed no cancer. My second scan Nov. 22 showed significant spreading of the cancer. Small nodules in both lungs swelling of lymph nodes in my chest. I was ordered to take another PET scan in Dec of 22 and that showed cancer in the lungs and lymph nodes along with met of a rib bone where the wedge resection was performed. My oncologist ordered blood work to try to determine if a gene was driving my aggressive cancer. After a couple of months it was found that a rare gnome is driving my cancer. I was given a few months to live while three chemo drugs were given on my first round of chemotherapy in Feb of 2023. Meanwhile I developed several DVTs in my right leg and ultimately a pulmonary embolism in my left lung. The hospital categorized my stay in the hospital in late Feb as hospice, The doctor on duty at the hospital informed me that my cancer has spread to my liver, spine and new nodules in each lung while the known tumors have grown. Released the next day with xarelto I’m still having issues with swelling in my right leg along with moderate pain if I walk any great distances. I know I don’t have long and likely won’t make my third chemo treatment unless some miracle or a medication is introduced, I was told about a dog dewormer called Fenbendazole by a friend in the medical field who said it really woks and advised to research it and that I did. A man named Joe Tippens found that in 2017 he was given three mos to live he started taking 222mgs of fenbendazole along with turmeric once a day that not only showed that it shrunk his tumors but eliminated them altogether. Joe is alive and well today. He has to take the fenbendazole because fenbendazole is not a cure and quitting it will likely result in the cancer returning. Many more medical studies have been done on fenbendazole and all show that it really does break down the cancer cell walls and eliminates the cancer in tumors, lymph nodes and bone metastasis. I ordered a bottle and will try it because at this point what do I have to lose anyway? The fenbendazole is safe for human consumption and unlike chemo has no side effects. I spoke with my oncologist today about using fenbendazole. She said sh never heard of it but if it truly does what I’m saying then she has no problem as long as I continue my chemo treatments . It’s now march 11th and I do round 2 chemo Tuesday the 14th. I will be starting the fenbendazole today or Sunday. Fenbendazole starts working within 24hrs of the first dose. More to come/to be continued 

[LouT]

Trowbee,

I'm sorry to hear about your recurrence and present condition.  I read your whole post and then did a bit of research on fenbendazole.  Articles and studies by NIH seem to indicate that taken alongside standard chemotherapy the drug appears to be generally safe but did not show proven efficacy against cancer.  Despite the aforementioned finding NIH stated "this general class of compounds merits further investigation".  Johns Hopkins (in a 2014 article) felt there could be some use for this substance in cancer treatment in mice as those treated with this dewormer showed reduced or no growth of cancer cells in an experiment.  It appears that more work needs to be done before anyone can say that fenbendazole is a viable cancer treatment.  There were no statements I could find about studies done with "genome triggered cancers".  My prayers go out for you to find a treatment that works and please keep us updated here.
Lou

[Trowbee]

True there aren’t enough clinical studies to scientifically prove that the efficacy of fenbendazole or whether it has any effect on cancer in humans. While I do not promote to anyone here I can only tell my story and if it works or not in my case. I have found many firsthand accounts of it eliminating cancer in a lot of people. I haven’t yet to find mention of gnome driven cancer in anything I’ve read however Joe Tippens’ lung cancer sounds very similar to mine in that it spread relatively fast throughout his body and by the time they started his chemo and there was little hope he’d live much longer. Metastasis of the bone, lymph nodes and other organs are all present in my case as well as his. My oncologist is planning to pull the carboplatin from my treatment soon leaving only the keytruda and one other chemo drug. I’m scheduled for a CT at the end of the month flowing my second chemo treatment. The keytruda is effective in reducing tumors of fast moving cancers so my hopes are to see reduction in size and growth of my cancer at the time of my CT.

[JHP]

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.

 

 

[Trowbee]

The regiment I’m taking with the fenbendazole includes curcumin and vitamin E. I don’t exactly know why the vitamin E but the curcumin helps to lower the liver enzymes if they’re high. I also use a statin drug for cholesterol and curcumin is also recommended for that. Yes success stories for fenbendazole usually end in the truth that they must continue fenbendazole for the rest of their lives even if they are cancer free due to the cancer returning when or if they quit. The upside to that is that you only have take it once a week if cancer free rather than every day and the fact that you won’t have to take chemo anymore. 
The gnome driving my cancer I believe my oncologist said is an NRG1. She said it’s rare and there are no known treatments available for it but there may at some point be a trial med available. I have haven’t been told about vaccine trials but if it is relative to ivermectin I know some about it and how it is promising in treatment of certain types of cancers. I looked into comparison of ivermectin and fenbendazole and made my decision based on effectiveness treating lung cancer, availability (time) and side effects. 

[JHP]

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/>

 

 

[Trowbee]

57 minutes ago, JHP said:

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.

Yes that’s kinda how my oncologist put it. She said no known drug was available. Originally she said if they can identify the gnome then she could prescribe me an oral med that would atleast half my tumors in size if not better. It took a long time for precision genomics to identify my gene, time that I really needed to be getting some treatment. It’s when I went for bloodwork that identified clotting they gave me an unscheduled CT scan I was informed my cancer spread to other areas. Known tumors grew. Time is not on my side here. That’s where if it does work for me the fenbendazole is my only real hope of survival. Precision Gnomics used blood and pathology of lymph nodes in their search.
Im not familiar with the term HER. 
 

[Karen_L]

Trowbee, 

You've gotten clobbered and I'm so sorry to hear it. You are taking it on with a lot of gumption.

I did a fast search using NRG1 lung cancer and came upon articles talking about possible TKIs (tyrosine kinase inhibitors) for treatment. I don't know where you are being treated, but it sounds like you would benefit from a second opinion. A major cancer center would be ideal. 

And, the GO2 Foundation has a service where they can help do a search of clinical trials. 

Hang in.

[Trowbee]

On 3/12/2023 at 12:37 PM, JHP said:

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/>

 

 

 

[Trowbee]

JHP - thanks for your reply. I did quit the curcumin because of the way it curbed my appetite and right now that’s not a good result for me. The curcumin was added to the regimen because some people are subjected to higher than normal liver enzymes while taking the Fenbendazole. I was not aware of it interfering with chemo treatment however and I’m glad I quit that. As for fish oil I’m taking 3600mg daily and 125mcg of vitamin D3. 

[Trowbee]

Karen L. Thanks for your reply! 
I am not certain of my gnome although I’m quite sure it is NRG however the number associated could be in error. I had a televisit the day my oncologist informed me of it and may have jotted down the wrong number afterwards. I meant to ask her again during my next appointment and there were so many developments I was overwhelmed and forgot. I will definitely find out 

[Karen_L]

Trowbee, 

I don't know how deeply you've read about lung cancer. I hope you'll go explore some of the Lungevity intro materials so you can get some basics under your belt-- especially an understanding of biomarkers and how they work.

I also urge you to have someone with you at all your appointments so they can take notes and you can review them later-- it is like being hit by a tsunami at the beginning and another pair of ears is very helpful.

I want to make three points here. 

I. You need to start learning to become an advocate in your own case. That means finding doctors who will stand should to shoulder with you and throw everything they have at the disease. General oncologists do not have the specialized knowledge necessary to deal with lung cancer. Heck, the field is advancing so rapidly, even lung cancer specialists have to work overtime to keep up. Here is information about becoming your own advocate-- I think it's an excellent resource.

I happened to be reading through some slides of a doctor's recent presentation that had info related to my own situation and found several references to your biomarker. There *is* being work done on it. 

II. Apparently the FDA granted Fast Track approval for serimantumab for use in NRG1 gene fusions. You need a doctor who has worked with this medicine to guide you and your local oncologist!

This article reviews the study that led the FDA to take that action. There are two doctors mentioned:  "Tejas Patil, MD, assistant professor of medicine–medical oncology at the University of Colorado School of Medicine in Aurora, discussed the trial and its implications in a recent edition of Between the Lines presented by CancerNetwork®. He was joined by Alexander I. Spira, MD, PhD, FACP, assistant professor of oncology at Johns Hopkins School of Medicine in Baltimore, Maryland, and director of the Virginia Cancer Specialists Research Institute."  I dunno about you, but I'd track them down and ask if they or someone they know would consult with you. You might have to travel to see that person. 

You may need some help navigating this process. Lungevity has a support service you can call. Read about it here. 

III. Afatinib is also showing some impact. There is a trial called TAPUR with a number(see below) that will make it easier to search for. 

You can learn about clinical trials here . That page also includes information about how to connect to someone who can help you find a trial, specifically, the one mentioned above. I urge you to use these Lungevity resources. 

You are determined enough to seek out paths outside of traditional medicine. I urge you to exhaust traditional medicine's approaches with just as much determination. 

All the best.

Karen

[JHP]

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