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Jcancom
(@jcancom)
Joined: 5 years ago
Posts: 558
 

@johan, I welcome your comments and the opportunity for a vigorous debate about clinics/treatments etc.. After all of these years of posting to the compass and to this forum and blog, I have largely stayed away from commenting on specific clinics or commercial products. My interest has been almost exclusively in an ongoing effort to understand cancer and help patients who are coping with cancer. Given a choice I would prefer to continue with such a method. 

However, dng050 has presented us with a new aspect of cancer management. I noted early on in this thread about the very notable results published by Chemothermia for metastatic lung cancer patients. The historical comparison group had survival of ~8 months; Chemothermia reported 42.9 month survival. My hope had been that this could be something that was on the backburner possibly for even a few years as other conventional approaches such as the current ROS1 therapy demonstrated effectiveness.

From what we can currently infer, the opportunity to delay metabolically supported chemotherapy is no longer perceived to be viable. dng050 has shown very good judgment to date and it is reasonable to suspect that this choice has been made after careful deliberation (even given the current difficult circumstances). I greatly wish that my suggestion will be seen as beneficial to his brother.

I am quite uncomfortable about the commercial implications involved, though, in this suggestion. There is a great deal of money involved and if the forum were to be dragged into often making such commercial endorsements the entire focus of our discussions could be lost. It would be highly preferred if medically trained consultants could be hired to give an independent assessment of the various alternative cancer clinics. However, such consultants do not appear to be available.

I am very glad that you have voiced concerns about making these suggestions, as I myself share these concerns. Alternative medicine even when published in reputable medical journals can have various methodological differences with conventional medicine that it is not easy to clearly determine what invalid assumptions might have been made. Ironically, with the Chemothermia clinic one clear potential bias is that the patients who attend the clinic need to be able to access upwards of ~ $50k for their treatment at the clinic. One could expect that more advanced patients might be less able to afford such a sum.

My motivation, as always, has been to suggest what given my current understanding is in the best interests of the patient. While Chemothermia likely is not in some utopian sense the best possible choice, though given dng050's current insight into how to manage cancer, I think it offers substantial potential to improve the outcome for his brother. If we are able to locate an even better option, then this would be even better still. In fact, I have posted to another thread research about how carboplatin can be amplified; perhaps this will also be of help to dng050.

johan, you have made many valuable contributions to this forum and have helped many people coping with cancer. I hope that you will continue to make these contributions and continue to demonstrate your high sense of personal integrity by offering your protection to vulnerable posters on forum. Challenging others on forum can help us all learn and grow in our understanding of cancer.  Best Wishes, J 

 

 

 


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johan
(@j)
Joined: 3 years ago
Posts: 638
 

@jcancom

I know how much you like 3BP but the fact is you're turning a blind eye with regard to the false claims by dayspring. And that's not a good basis for the advice you're giving. Where, if not there, do you draw the line in the sand?

But let's move on, I think there's enough said on this topic.

 

 


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dng050
(@dng050)
Joined: 2 years ago
Posts: 46
Topic starter  

@finnan Thanks for the suggestion on LDN. Do you know a reliable source? I have come upon https://www.buylowdosenaltrexone.com/, but I do not know if it is reliable. 


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dng050
(@dng050)
Joined: 2 years ago
Posts: 46
Topic starter  

Dear @asafsh,

Do you have any thoughts on the ChemoThermia Clinic in Istanbul? I understand you are from Turkey? Right now, my brother and I try to decide which is the best option, Turkey clinic or transpulmonary chemoembolisation for NSCLS.

Kind regards,
dng050


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dng050
(@dng050)
Joined: 2 years ago
Posts: 46
Topic starter  

Dear friends,

I have been in contact with prof. dr. Thomas J. Vogl at the University Hospital in Frankfurt, Germany. He has proposed this treatment for my brother:

"yes i think we can assist here
in two steps
first further downsizing and deactivation using TACP and TPCE and then later thermal ablation using MWA"

The idea of regional chemotherapy administrated through transarterial chemoperfusion (TACP) and transpulmonary chemoembolisation (TPCE), with lesser side effects than systemic chemotherapy and also without lung surgery, sounds good.

I have not succeeded in getting a more in-depth explanation from prof. Vogl (perhaps due to time constraint on his part) on the chances of remission undergoing such treatments.

Kind regards,
dng050

 


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Daniel
(@daniel)
Admin
Joined: 6 years ago
Posts: 1058
 

Hi @dng050,

Whenever I or others communicated with prof Vogl, had the same experience. Short and to the point communication. When you are in the hospital you will understand why: this is one of the largest hospital in Germany and not a small clinic, while Vogl is the director of the institute, sees patients in the morning, does the intervention, sees patients in the evening and answer to the patients (not his secretary) all day and night. I went there with my wife as a patient and saw all this. What I find impossible is that he is answering during the mid night, while I heard he goes to work very early in the morning at something like 5am on the bike. And he has a wife and kids :))) This is crazy to me. Usually, I did not like that kind of short communication, but than I learned to appreciate that because I could speak directly with him about my wife instead of secretary.

I don't think he will go into speaking about chance of remission. But what I can tell you is that I know people who had complete responses, partial, stable and others who did not responded. Therefore, this approach can also lead to very positive results for some patients.

You should also know that while most of the people have no side effects other than constipation a few days after the intervention, I also know a few who had some side effects and one person even passed a weak or so away after the second intervention. Not clear why but the immune system collapsed. It was assumed that they made a mistake in combining the following: advanced cancer patient and weak, doing chemotherapy and adding on top of that TACE. This is the only case I've heard of some years ago.

If I would go for this treatment I would also consider to build up a strategy to support and increase the chance of effectiveness of the intervention.

In my view, this is a great option for local treatment with good chances of results. However, systemic treatments may still be required after that to address potential circulating tumor cells or micromets.

I hope this helps, shows the potential, but also makes the readers realise that when fighting cancer nothing comes without risks. It's always about balancing the risks vs rewards, and addressing the highest risks first.

Kind regards,
Daniel

 

This post was modified 2 years ago by Daniel

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Jcancom
(@jcancom)
Joined: 5 years ago
Posts: 558
 

D, this sounds like a good one. A TACE variant debulking before metabolic therapy? Makes a great deal of sense to me. I will be very interested to hear your suggestions on how this could be amplified with pre-metabolic treatment. I am sure that you have mentioned this many times before, though it would be important to state it again. Fasting, metronomic 2-DG? This would be a very good opportunity to observe how powerfully effective strong metabolic pressure can be. Is this a new medical treatment? Metabolically supported interventional chemotherapy? Would need to run all this by them beforehand; also might want to coordinate this with Chemothermia (if the plan is to follow on care with them). Starting with a debulked tumor mass should give their metabolically supported chemo an even better chance at being effective.  


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Daniel
(@daniel)
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@jcancom Hi J,

Thank you for the questions. Indeed, it would take a lot of time to write all what I would consider to build around TACE, but I would at least consider addressing various resistance mechanisms including antioxidants, pH, MDR, micro circulation, autophagy and for patients where tumors are larger I would also consider addressing intratumoral bacteria as a resistance mechanism.

After TACE I would consider supporting it with metabolic options including Metformin and 2DG metronomic. Would also try to inhibit inflammation and fibroblasts that may try to "cure" the potential wound created by effective treatments.

These are some mechanisms that come now to my mind. But I would not combine this with another clinic providing chemo due to the risks mentioned above.

Alternative to TACE, if I my medication would be halted and would want to consider treatments, I would consider with IPT or a combo of natural treatments including Vitamin C, Curcumin IV, and hyperthermia that can be accessed at many many clinics in Germany or around Europe, since the patient is located in Europe. Here is a list of clinics (not all but most addressing oncology) we included on a map so that it is easy to see where the clinics are located https://www.mcsformulas.com/doctors-and-clinics/

Kind regards,
Daniel

 

 

 

but like I mentioned elsewhere 


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Jcancom
(@jcancom)
Joined: 5 years ago
Posts: 558
 

@dng050, this is somewhat out there, though it might be worthwhile to at least contact them. They are making claims here that are too strong to be ignored.

"Objective results are guaranteed to be observed in the first two weeks of initiated treatment." Um, Ok. I'll pay you (or not) in 2 weeks then. If they believe in what they are selling, then they should accept such an offer.

"We accept the enrolment of patients with inoperable or metastatic cancers in which we believe, based on our experience, that the complete eradication of the disease is likely with atavistic chemotherapy.  ... Most cancer patients previously treated with traditional chemotherapy are excluded. Scientific studies have shown that over time traditional chemotherapy makes cancers more aggressive, metastatic, and resistant to other treatments.  ... Only occasionally, we see complete disease regression following atavistic chemotherapy in cancers previously treated."
 
All of these treatments are FDA approved and familiar to us. Would like to hear D's take on this.

https://atavisticchemotherapy.com

https://clinicaltrials.gov/ct2/show/NCT02366884

 

Drug: Anti-Bacterial Agents

Doxycycline, Paramomycin, Clarithromycin, Clindamycin, Dapsone, Miltefosine

Drug: Anti-Fungal Agents

Itraconazole, Amphotericin B liposomal, Fluconazole, Terbinafine, Voriconazole

Drug: Anti-Protozoal Agents

Nitazoxanide, Chloroquine, Albendazole, Ivermectin, Mebendazole, Metronidazole, Praziquantel, Levamisole

 

Hope this is helpful to you. Best Wishes, J


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Jcancom
(@jcancom)
Joined: 5 years ago
Posts: 558
 

https://www.researchgate.net/post/High-dose_intravenous_ascorbate_as_an_important_weapon_against_cancer_Whats_your_experience_with_high-dose_intravenous_ascorbate_against_cancer

 

Creator of atavistic chemotherapy makes the highly flamboyant claim that all chemo naive patients have achieved a complete response (June 22, 2019 post). 100% in 2 weeks?


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Yudaitheska
(@yudaitheska)
Joined: 3 years ago
Posts: 32
 

@jcancom

Reading Dr. Arguello's comments reminds me of Dr. Alberto Halabe so highly defending that citrate was the cure. I believe it is the combination of approaches what really makes a change. Prooxidant therapy along with this Atavistic theraphy would be interesting


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dng050
(@dng050)
Joined: 2 years ago
Posts: 46
Topic starter  

Thank you, @jcancom. I will take a look at this, although travelling to Mexico for treatment at this time would pose a challenge. 


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Jcancom
(@jcancom)
Joined: 5 years ago
Posts: 558
 

dng050, no tacos for you! I was thinking more of treatment in place; contact them, discuss details of the treatment and then treat where you are. These are all FDA approved treatments and could be conveniently taken outside of a hospital setting. This is one of those instances where if it works, then it would be fantastic; if it doesn't, then move on to plan B; no great loss. 

If I were going to defraud people, then I would never make the claims that they are making. We went through this logic a few times on the compass thread. Con men make non-falsifiable claims. They use lots of wiggle words. Some people, some of the time, during certain unknown phases of the moon.

But 100%? Within 2 weeks? All complete responses (only condition naive to traditional chemo?). There is not a great deal of wiggle room. They do though speak of some possible selection that might be involved. The patients nevertheless appear to have serious stage IV cancer. I am not sure whether they would stage your brother as part of their treatment cohort.   

Of course, many of these treatments are highly familiar to us. It would not be entirely unexpected that this could be as claimed.

I was surprised that the clinical trials gov site was not more specific about the exact dosing involved. I suspect that such information typically would be disclosed in some public document ... somewhere.

It would be helpful if clinical trials were to allow global enrollment as it would demonstrate that the treatment had ecological robustness and validity. However, I am not sure whether the investigators would accept a call in enrollment from Norway-- even with COVID.

 

Interesting. If you go to the clinical trial gov page you see that the original trial appears to use

Doxycycline, Paramomycin -- Anti-Bacterial Agents

Nitazoxanide and Chloroquine -- Anti-Protozoal Agents

Itraconazole and , Amphotericin B liposomal -- Anti-Fungal Agents

Apparently they added in the new agents as they gained experience in the trial. D probably has knowledge about all of these if you needed dosing assistance. I am not sure whether we have talked about liposomal amphortericin B, though. They also started with a US site and then went all Mexican.

dng050, this could be very helpful to you. Contact them, see what they say. See what D says. Perhaps get a prescription for ~10 of the treatments, though many of these appear to be similar. The anti-protozoal agents have 3 "azoles". Perhaps levamisole is also in the "azole". D could help with choosing.  

 

 


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Jcancom
(@jcancom)
Joined: 5 years ago
Posts: 558
 

dng050, sorry for all of this confusion. It does make life so much easier when there is one simple plan that can be followed instead of all of these potential choices. Yet, these choices could be very useful. If atavistic chemotherapy truly could change your brother to NED, then you would still have the ROS treatment to fall back upon for an extra layer of cleanup along with several other ideas that we have mentioned. Having more choices is a good thing.

On the Combo syrosingopine thread there has been a great deal of excitement over formulations with chitosan. Perhaps formulations with the atavistic drugs might even be helpful, though at this time perhaps not practical.

 

 

Two other lung cancer treatments that have caught my eye recently. These are obviously in the preclinical stage though with most metabolic ideas, there is generally never a clinical stage. This is a variant of our favorite idea of dual inhibition. Phenformin as a standard OXPHOS I inhibitor; this time gossypol (?) as a ALDH1L1 inhibitor. Apparently, ALDH1L1 can add NADH as an energy source for OXPHOS (some uncertainty though). 2 of the 7 treated mice had a substantial response. Gossypol has been used for decades in China as a male contraceptive. It is often described as toxic though the 2 main toxicities male infertility (~90% resolves within one year) and hypokacemia would seem to be manageable. They might be even more manageable yet as a new chitosan formulation for gossypol as recently been published. 

 

 

I have also read up on carboplatin and its enhancement in lung cancer through the manipulation of the CTR-1 (copper and carboplatin transporter). The more carboplatin that reaches a tumor the more effective it can be. A recent formulation for carboplatin have been published. There are a great deal of options available to you. This one might now not even be one of the stronger ones; avoiding chemo if possible would be for the best.

Best Wishes, J

 


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Jcancom
(@jcancom)
Joined: 5 years ago
Posts: 558
 

dng050, I have been reading up further on atavistic chemotherapy. Popular science media have picked up on it and have considered it quack medicine. It is somewhat difficult to understand how that could be true, if the 2 week rule stands. Yet, it might reflect highly selective trial entry conditions. I did notice a few odd aspects of the clinical trial that is underway. For example, is it years past its reporting data; no dosing is given on the clinical trials gov page; no clarity to what exactly the treatment drugs involved are etc. etc.. The problem could be related to the idea that once the exact treatment were disclosed than it would largely be beyond patent protection. This money aspect appears to play a prominent role.

I had not believed that it could be this murky, given claims that are made. However, it does seem quite unclear. It would probably be worth at least some investigation, though if they do not appear to be willing to help then it would be best to move on to other options.  


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johan
(@j)
Joined: 3 years ago
Posts: 638
 
Posted by: @jcancom

dng050, I have been reading up further on atavistic chemotherapy. Popular science media have picked up on it and have considered it quack medicine. It is somewhat difficult to understand how that could be true, if the 2 week rule stands. Yet, it might reflect highly selective trial entry conditions. I did notice a few odd aspects of the clinical trial that is underway. For example, is it years past its reporting data; no dosing is given on the clinical trials gov page; no clarity to what exactly the treatment drugs involved are etc. etc.. The problem could be related to the idea that once the exact treatment were disclosed than it would largely be beyond patent protection. This money aspect appears to play a prominent role.

I had not believed that it could be this murky, given claims that are made. However, it does seem quite unclear. It would probably be worth at least some investigation, though if they do not appear to be willing to help then it would be best to move on to other options.  

I'm glad you realize the danger. It reminds me of a beautiful young lady, she was a popular health blogger. She chose the gerson diet, but rejected standard therapy , her mom also got cancer, breast cancer, and also rejected chemo. Both died, and they did not exceed life expectations for their diseases, they actually did worse. 


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dng050
(@dng050)
Joined: 2 years ago
Posts: 46
Topic starter  

Dear friends,

In my quest to find complementary treatments, I have stumbled upon Salvestrols. These are a group of natural compounds found in certain vegetables, fruits and herbs. What is interesting about them is that they can be metabolised by CYP1B1, which practically only exists in malignant cells. When salvestrols are metabolised in cancer cells, they will induce apoptosis in these cells - thus providing a targeted anticancer treatment. 

Here are some references:

1. Salvestrols—Natural Products with Tumour Selective Activity
2. Bitter is better, an introduction to salvestrols
3. Case studies with salvestrol treatment - 2007

The scientific research behind salvestrols seems plausible and the case studies are promising. Since there are no reported adverse side effects, it would not harm to try. 

What do you think? Anyone tried Salvestrols or heard of anyone been taking them?

Kind regards,
dng050


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Daniel
(@daniel)
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Joined: 6 years ago
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Hi @dng050,

Thank you for sharing! Indeed, we used them intensively with my wife in 2014/2015. I cannot say if they helped or not as we were taking a lot of other supplements, rep drugs (and IVs) but we had good time in 2014/2015 (while we should not according to statistics). 

I am considering to have them also at MCS Formulas, but before deciding I would need to look again deeper into the science behind.

That is the only feedback I can give at this point, but when I looked into them 5 years ago seemed relevant enough to start using them.

Kind regards,
Daniel

 

This post was modified 2 years ago 2 times by Daniel

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dng050
(@dng050)
Joined: 2 years ago
Posts: 46
Topic starter  

Thank you for the input, @daniel

We are now waiting for the Salvestrols to arrive, and we are eager to start on them. Will let the forum know whether my brother gets a response from this supplement.

With the coming Brexit, it might be difficult to source Salvestrols from Great Britain, which is where we have sourced our Salvestrols. It would be great to have a source within the EU/EEA too.

With regards to information on Salvestrols, I have found International Health News to be a good source. At least they might be a starting point. Here are the newsletter editions in which I have found Salvestrols mentioned:

1. http://www.yourhealthbase.com/archives/ihn240.pdf
2. http://www.yourhealthbase.com/archives/ihn247.pdf
3. http://www.yourhealthbase.com/archives/ihn265.pdf
4. http://www.yourhealthbase.com/archives/ihn270.pdf
5. http://www.yourhealthbase.com/ihn303.pdf

Kind regards,
dng050

 


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dng050
(@dng050)
Joined: 2 years ago
Posts: 46
Topic starter  

STATUS UPDATE

Dear friends,

My brother failed to rechallenge crizotinib (due to elevated liver enzymes), so we had to look for another TKI option. His oncologist has applied for entrectinib, which has shown promising data in clinical trials. While we wait for the application to be approved, hopefully, we have to try to contain the cancer. Since entrectinib has not yet been approved for sale in Norway, the estimated time for application processing and approval for sale amounts to roughly two to three months. 

We are very anxious that this waiting time will allow the cancer room to proliferate and spread, especially having in mind that the ROS1 mutation is like having your feet pushed constantly on the gas pedal. Today, we received bad news of progression following the CT scan my brother did a couple of days ago of his lungs. From what I understand, the significant regression of the cancer which we saw on the crizotinib therapy, has now virtually been reversed. So back to square 1, basically.

While we wait for life-saving entrectinib, all we can do is to pray and try to contain the cancer with supplements. I am suggesting to my brother that he has to upp some of the doses, like melatonin (15 mg -> 60 mg at least), modified citrus pectin (10 g -> 15 g), and turkey tail mushroom (1.5 g -> 6 g).

Ref.
1. Phase 1 Clinical Trial of Trametes versicolor in Women with Breast Cancer
2. Dose-Dependency of Antitumor Effects of the Pineal Hormone Melatonin in Untreatable
Metastatic Solid Tumor Patients
 
I have also looked at Cimetidine, but reluctant that it might affect the gut microbiome negatively. LDN looks promising, but I am not certain whether I should introduce it at this point - with so many supplements going on.

Kind regards,
dng050


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Daniel
(@daniel)
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Joined: 6 years ago
Posts: 1058
 

Dear @dng050,

I am sorry to hear about the progression. If you thing it would be helpful to have feedback, please let me know:

1. What are the drugs and supplements used during the progression (and dose)
2. And you plan for the coming months while waiting for application approval.
[You already mentioned to possibly increase the dose of melatonin (15 mg -> 60 mg at least), modified citrus pectin (10 g -> 15 g), and turkey tail mushroom (1.5 g -> 6 g)]

Thank you.

Kind regards,

Daniel


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Jcancom
(@jcancom)
Joined: 5 years ago
Posts: 558
 

dng050, this is really tough news; I feel for you and your brother. The treatment plan outlook had appeared quite positive with a strong targeted conventional therapy as a base and then down on the horizon possible rotation to metabolically supported chemotherapy.

I am uncertain now of how you want to approach this: Are you considering visiting a clinic or do you want to focus more on some of the many ideas that we have posted to the forum? Some of the posters to the forum with nearly around the clock treatments have achieved substantial disease control. There are a great number of generic metabolic therapies (e.g., citrate, IV vitamin C, fenbendazole, and many others) that could form the foundation for a more elaborate treatment. For example, fenbendazole has been found to have substantial synergy with DCA and 2-DG; etc.. Of course, these treatments, unfortunately, do not have extensive clinical trial research to match that of crizotinib.   

Without targeted ROS1, it will become more of a scramble to keep up with potential progression. It is especially worrisome that as you noted ROS1 can result in aggressive tumors. I greatly hope that at some point it will be possible to reintroduce crizotinib. 

Best Wishes, J


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dng050
(@dng050)
Joined: 2 years ago
Posts: 46
Topic starter  

Dear @daniel and @jancom,

This is the medications and supplements my brother has been taking while the cancer progressed:


Medications

  1. Crizotinib, 200 mg/day --> on/off depending on liver values (typically he would take 200 mg for a couple of days, and then go off for about two weeks waiting for the liver enzymes to calm down)
  2. Tenofovir, 25 mg (for hepatitis B)

 

Supplements:

  1. Turkey tail mushroom, 1 500 mg/day
  2. Melatonin, 15 mg/day
  3. D-vitamin, 1 600 mcg/day
  4. Vitamin K2, 75 mcg/day
  5. Honokiol, 1 000 mg/day
  6. Milk thistle extract (Legalon), 280 mg/day
  7. Modified Citrus Pectin, 10 g/day
  8. Artichoke leaf extract, 1 000 mg/day
  9. R-alpha Lipoic Acid, 240 mg/day (has gone off this yesterday since my brother complained he was taking too many pills)
  10. Specialised pro-resolving mediators (SPM), 2 capsules

 

Salvestrols and co-factors:

  1. Salvestrols, 10.000 points/day [started 28.07.2020]
  2. Vitamin C, 2 g/day
  3. Magnesium, 350 mg/day
  4. Biotin (vitamin B7/H), 425 mcg/day
  5. Niacin (vitamin B3), 420 mg/day
  6. Riboflavin (vitamin B2), 20 mg/day

Our original plan was to keep the cancer under control with a targeted drug while seeking adjuvant metabolic/alternative treatment. But after having failed crizotinib, we have not been able to proceed to the second step seeking out adjuvant treatment. Ours hands are full trying to apply for another TKI. Thinking that we might not get another TKI approved, we have been looking at other options as well just to be prepared, like regional chemotherapy with dr. Vogl in Frankfurt, hyperthermia witg dr. Herzog (also in Frankfurt), and immunotherapy with dr. Ralf Kleef (in Vienna).

If travelling is ruled out, and there are no TKI for us, I was thinking of giving my brother what I have, which is LDN, mebendazole, metformin, atorvastatin, dipyridamole, hydroxychloroquine, and cimetidine - depending on what his liver can tolerate.  

Kind regards,
dng050


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Jcancom
(@jcancom)
Joined: 5 years ago
Posts: 558
 

dng050, Crizotinib has been such a successful treatment for your brother and yet the side effects are preventing continued treatment. What if, you could remove the side effects? Properly formulating crizotinib could achieve such a result. Typically a properly formulated treatment can lead to over a 100 fold dose reduction. At such a dose side effects would probably disappear.

There is already published research that formulates crizotinib. The Chitosan hydrogel might not be exactly what you want, though +Viagra formulation might be worth considering. Perhaps also a simpler Chitosan-Crizotinib nanoparticle might be synthesized.

Properly formulating crizotinib could be an extremely powerful way of treating your brother's cancer. You already know that crizotinib is effective from previous treatments; the formulations will focus the treatment directly to the tumors and allow very large dose reductions.      

It might take some effort to find a lab to do this, though there would be a substantial payback for such exertions.

Best Wishes, J

 

Chitosan-Crizotinib Hydrogel

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5444739/

+Viagra

https://pubmed.ncbi.nlm.nih.gov/24623484/

Prodrug

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7179202/

Patent +Chitosan (inhaled?)

https://patents.google.com/patent/WO2013017989A1/en

 


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Jcancom
(@jcancom)
Joined: 5 years ago
Posts: 558
 

@dng050


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Jcancom
(@jcancom)
Joined: 5 years ago
Posts: 558
 

@Daniel, could you help out here? I think the idea of formulating crizotinib is too good to let slide. I do, however, fully understand how people can be intimidated by the thought of laboratories. What I have thought might be of help is a compounding pharmacy. Do you know of German (or other) compounders that would such a service? Properly formulating drugs is one of their areas of expertise. In this instance it would seem critically important to formulate critzoninb in such a way as to give the therapeutic benefits without the side effects. Given that many of these formulations can reduce dosing by >100 fold while maintaining effectiveness, exploring this option for dng050 could be of considerable help. This is all the more true because we already know that crizotinib is effective for dng050's brother; he has the scans to prove it!

J


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Daniel
(@daniel)
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@jcancom Hi J, 

Your idea is very good but in reality there is no pharmacy to my knowledge specialised in doing something like this other than the pharma companies. So in this case, when a patient wants to move on this line he has to be in the driving seat. He needs to know what he is looking for and find some specialist that could do it. As a patient, to jump in to this starting with no knowledge in the field is close to impossible. This is why as a society, we need to build organisations that could support - but that is far away. A more realistic picture is that a patient who has no experience in the field, starts with low hanging fruits (accessible treatments) and as he gets more knowledge, he can step into areas such as those that you mentioned - as Manuel did. So I think, getting to such a formulation is a journey J, for most (of knowledge and confidence in own actions, in a new field).

Kind regards,
Daniel


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Jcancom
(@jcancom)
Joined: 5 years ago
Posts: 558
 

D, it is frustrating there are sometimes products out there that can help patients and there is actually a legally regulated vehicle that could take them there first class and yet there are these obstacles that prevent them from getting what they need. I had not realized until recently that even Coley's Toxins are still available. Sometimes you need to really know where to go and sometimes need to really know the right people.

I was also wondering whether dng050 could simply buy some of Manuone's liposomes, add in a small amount of crizotinib and then stir? I think that chitosan is probably a better formulation, though add and stir basically is at the chemical competency of everyone.

https://en.wikipedia.org/wiki/Compounding


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dng050
(@dng050)
Joined: 2 years ago
Posts: 46
Topic starter  

Dear friends,

@jcancom, the articles you referred to looked quite intriguing. Ideally, my brother would have continued on crizotinib since he de facto has responded incredibly well on this drug. I am, however, a little bit intimidated by the experimental nature of those projects.

@daniel, our plan now is not paradigme shifting. Basically, we continue with the same supplements with some minor tweaks in dosing. E.g. my brother was taking 15 mg melatonin (liquid) at night hitherto, but today I am thinking about starting him on melatonin powder 40 mg. We will get answers next week whether our entrectinib application will be approved. Even if there is a positive outcome, we have to wait about 8 weeks for the meds. 

I will keep an eye on my brother during this waiting time. I will consider adding LDN. If his condition worsens, I might suggest to him that we go to Germany, either to dr. Herzog in Frankfurt, or to Vienna at dr. Kleef, to get "light" treatment in hope of containing the cancer. I was thinking perhaps IVC, IV curcumin, mistletoe, and perhaps hyperthermia, etc. to strengthen my brother's immune system, but no "big guns" like immunotherapy, chemo, or radiation. I am anxious that such treatments would push the cancer to mutate and, thus, render it resistant to entrectinib even before we have started on the drug.

So, basically this is waiting time for us, praying and hoping that the application will be approved and that the medicine will arrive in time for my brother. Fortunately, we have received some positive initial signals that the application will be approved, but nothing certain yet.

Kind regards,
dng050 
 


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Daniel
(@daniel)
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Joined: 6 years ago
Posts: 1058
 

@jcancom J, you are right and I agree! That is what I would try also.


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