Would someone be willing to help with my proposed protocol?  

Page 1 / 3
  RSS

grant
(@grant)
New Member
Joined: 2 years ago
Posts: 15
27/04/2018 4:05 am  

Hello.  First time posting, but have much appreciated this site.  In six years of searching while fighting cancer, this is the very best I have ever seen.  Thank you to all who have made it a reality.

The background is I have SCCHN diagnosed in Sep 2012 as stage IV metastasized resulting in right neck dissection.  I refused the recommended surgery, chemo, radiation in favor of natural alternatives.  Doctors said I would be dead in less than a year on a couple of occasions and was put into writing by one of the doctors and  given to life insurance company to qualify for prepayment of benefits.  Did well on a variety of natural protocols, but stress, competing life issues or perhaps just disease progression resulted in massive tumor growth in base of tongue, oral tongue and tonsil.  Consequently, went to MD Anderson in Houston for treatment.  Had 6-8 weeks of inductive TPF chemo, followed by 37 proton and full field radiation treatments ending in Sep 2015.  In November 2016 had a cancerous node removed in neck, lung biopsy and told had spread to lungs.

The only option given was immunotherapy.  Started Nivolumab in May 2017 which has continued to date.  In February 2018, the chemo doctor said I would likely expire in about 6 months.  Am male, 71 years.  I have spent the last couple months intensively researching alternatives and have a tentative plan, but feel I am running out of time to make sure it is a reasonable approach.

I have read much of the site, but cannot seem to reach final conclusions…and feeling quite overwhelmed and like it is taking too long to get started on a protocol.

Any help or comments through other eyes than mine would be greatly appreciated.

Protocol:

  1. Continuing Nivolumab infusions every 14 days.
  2. Treating cancer as a metabolic disease per Dr. Thomas Seyfried, et. Al.
  3. Ketogenic Diet, aiming for a Glucose-Ketone Index (GKI) of ≥1. Utilize Intermittent Fasting (IF) to maximize ability to keep close to the GKI target.
  4.   Use of Exercise with Oxygen Therapy (EWOT) as a better alternative

than Hyperbaric Oxygen Therapy (HBOT).  Fifteen minutes twice per day.

  1. Adjuncts to Keto Calorie Restricted Diet and Oxygen Therapy:
  2. Metformin: 2000 mg day/divided doses
  3. Dichloroacetate (DCA) Planning on 2 weeks on, one week off.

As soon as possible, dosage of 40-50 mg/kg per day in divided doses

  1. Thiamine B-1 750 mg/day split according to taking DCA

Many say Benfotiamine is preferable to Thiamine due to producing higher concentrations?

  1. R-Alpha-Lipoic acid (R-ALA) 500 mg with DCA doses
  2. Acetyl L-carnitine (ALCAR) 500 mg/day
  3. Ubiquinol 200-400 mg/day
  4. Pyrroloquinoline Quinone (PQQ) 20-40 mg/day
  5. Mebendazole (MBZ) 200-500 mg/day
  6. Cimetidine 400 mg, twice daily.
  7. Doxycycline 200 mg/day
  8. Use high dose liposomal vitamin C in conjunction with Doxycycline

Not sure whether the Doxycycline and Vitamin C are done concurrently or sequentially.  I have found no reference making that clear.

  1. Daily Use of Molecular Hydrogen (H2) gas and drinking H2 infused water.  Breathing H2 done over night with cannula and immediately after EWOT
  2. Daily use of photon sound beam (PSB), including while taking redoxed minerals and preliminary to EWOT.
  3. C3 Curcumin,10 gm and Boswellin PS 10 gm daily. Fermented and predigested in raw goat’s milk kefir.  Also may include ginger and pine pollen.
  4. Daily use of Probiotic & Prebiotic blend which includes Lactobacillus plantarum, Ashwagandha, Vit D 10,000 units / day,  Organic sulfur, Organic Coconut Oil,  Astaxanthin,  Fermented Skate Oil, Fermented Cod Liver Oil, Dried Dandelion Root powder (self made), Essiac tincture.
  5. Raw Goat’s milk kefir I make myself
  6. I also have used Red Desert Clay, a calcium montmorillonite clay, but wonder if it would not obviate some of the drugs/substances in the protocol?
  7. Considering to add Avemar and Artemisinin, dependent on finances.
  8. Per posts on the forum, I believe I need to add Procaine, Diclofenac or Sulindac to increase SMCT1, and Omeprazole. Although 80 mg/day as a recommended amount seems quite high.

Would pantoprazole do the same thing as Omeprazole? 

Would lidocaine do the same as Procaine?

  1. Per posts on forum I need to avoid iodide, quercetin and resveratrol.

This is long, my apologies for that.  My rationale is that since several doctors are predicted my demise sooner rather than later, it seems that I should do as much as I can afford without creating conflicting situations where one thing cancels out another, e.g., quercetin and resveratrol and DCA.

 As long as I continue taking Nivolumab I have access to quarterly PET/CT scans for monitoring.  If I am put on palliative status, insurance will no  longer pay for scans.

I am worried that I may have conflicting parts or have missed critical issues.  Since according to doctors my time is getting short, I cannot afford to make mistakes, as it may be my last chance to slow down the cancer.

Thank you so much to anyone who might help me with this.


Quote
Alex
 Alex
(@snake)
New Member
Joined: 2 years ago
Posts: 14
28/04/2018 12:18 am  

Dear Grant.

First of all, that looks like a very difficult protocol to start and keep. Toxicity? Side effects?

Some things in there are not compatible or even worth adding/doing.

I may be wrong....

But it sounds to me like you should have your medical papers checked for genetic profiling of the tumor, something to give you a better idea of what you are faced with, other than images on a CT/PET/MRI scan.

Specific mutations of the tumor cells that could perhaps be targeted with established specialized drugs or therapies, by doing so, you'd get much better results, and maybe adding a few things on the side with the doctor's consent and approval or recommendation would also help.

I fairly believe that life should be lived not replaced with therapies, day in and out.

It is unfortunate but cancer in so many situations does tend to succeed despite treatment, regardless of the sophistication, and then.... that little time that was left, was wasted with useless expensive things.

On the other hand, yes something must be done, but it shouldn't take you all day, every day if it can.

And yes there are chances of you coming out successful, you never know.

I understand that some tumors are fairly in reach, tongue? The fastest route between two points is a line.

Reading your comment made me think you're a very inteligent person, so please don't confuse yourself with highly complex stuff, take the direct route, use ointments, oils, apply them on the surface of your tumors or skin covering the tumors, they will infiltrate the tumor tissue, and some substances could prove useful in your fight with the disease. Diclofenac gel could be one and other anti-inflamatories etc.

It also sounds like your cancer is well versed in the art of metastasis, so maybe you wanna point your gun at making metastasis harder to achieve.

Reading here can be very educative but the real deal is out there, you have to talk to your doctor, see what your tumor is saying at a genetic level, and then target those weak points. You may be interested in a CTC test or even a chemosensitivity test, they have the pottential to give you helpful information that you and your oncologist can then use to apply the best protocol with approved methods.

If a biopsy is needed, and you didn't do one, you will have to decide weather to do one or not.

From what i understand biopsies have the potential to release more cancer cells into the blood stream and increase the level of metastasis.

 

Remember, everything you do, you should do with a doctors approval, and if the doctor's word is no longer important to you, do what you feel is best, when you feel it is. Just because someone said something, like me... it doesn't mean they are right.

 

I wish i could be of actual help.

Alex

Thank you very much,
Alex

Together We Can Do it!


ReplyQuote
Daniel
(@daniel)
New Member Admin
Joined: 4 years ago
Posts: 400
28/04/2018 1:50 am  

Dear Grant,

I am currently traveling and will be back home on Monday. If I can I will respond before that, otherwise it will be beginning of next week.

I think the treatment strategy should be build around Nivolumab with the goal of enabling or increasing its effectiveness. Are you taking it 2x/month? What is the dose? 3mg/kg?

As a side note, one of the best clinic in Germany on immunotherapy is actually using DCA prior to Nivolumab. On that line, I am not sure if I would use Metformin here. I will think about that.

Also, I would not use Doxycicline - not a good combination with Nivolumab in my opinion.

Kind regards,
Daniel


ReplyQuote
grant
(@grant)
New Member
Joined: 2 years ago
Posts: 15
28/04/2018 3:31 am  

Dear Alex,

Thank you for taking the time and effort to reply.  Regarding difficulty of starting and keeping…not too bad.  As for Toxicity and side effects.  I have seen nothing so far that has concerned me overly.  Toxicity should not be an issue and potential side effects seem manageable…particularly when you compare to side effects I have from chemo and radiation, the potential side effects are minimal.

I would be interested to know what things are incompatible and not worth doing.

I have asked about genetic profiling, both at MD Anderson, Houston, and local oncologist.  It was not judged by either to be cost beneficial since I would have had to pay a couple thousand or more for it.  At MD Anderson and where I live, it is not regularly done.  I do know that the SCCHN is HPV relation, P16 positive.

At both locations, their opinion was I had only nivolumab or keytruda as options, and perhaps cetuximab, but they were not keen on the value of the later.

My local oncologist is in my opinion excellent.  He is Russian, attended med school in Russia.  Consequently, he has a more open understanding about issues outside of the standard of care than US trained doctors.

He has seen the proposed plan, and prescribed Metformin, Doxycycline, Cimetidine, and Mebendazole for me.  He was not aware of the situation with MBZ in the U.S., but it is impossible to acquire unless you can afford $400-$600 USD / 100 mg tablet. 

He recently said there were not good options for me unless possible clinical trial, but would be a longshot.  The nivolumab has not had a noticeable positive result after one year.  His statement was that during trials, the positive results were about 16%, and they found that patients who continued for a second year, yielded about and additional 15% responders.

I had asked and him and the people at MD Anderson about checking for markers etc. before deciding what to do, and it was deemed not necessary.

The reason I put together this particular protocol was the idea of cancer as a metabolic disease rather than a disease according somatic mutations makes more sense to me.  The main result of the genome project has been to create more data than can even be accessed except for institutions with exceeding computing capability and to reveal the extreme heterogeneity between and particularly within various “kinds” of cancer.  When thousands of variations occur within a type, the heterogeneity would seem to argue against the wisdom of targeting single issues.  On the other hand, there are similarities and commonalities shared by virtually all kinds of cancers, that is metabolic issues and survival issues.  So even from a betting proposition, it makes more sense to me to look at commonalities rather than the excessive variations of genetics.

Just one last comment to reveal my bias.  I am mostly persuaded that the SMT theory of cancer is not the best theory.  I think it suffers from a chicken or egg error and severe lacks parsimony… i.e… simplicity.  Seems that the genetic damage is more a result of cancer…than the cause.  In fact, a respectable amount of research supports that conclusion.

In any event, I do wish to be argumentative at all.  I mention the above to reveal my biases and why I have put the emphasis and cancer as a metabolic disease, and to explain my lack of confidence in Nivolumab.  For a treatment option that has a price tag over $30,000 per month, it does not seem to be justified given the scant impact of results. 

I greatly appreciate your comments and particularly your suggestion of topical application to tumor area.  I had wondered if DCA might be used topically, as in Canada I believe that is so.  I will look into Diclofenac gel. 

I will ask my doctor about CTC.

Thank you Alex.  I believe you were actually helpful to me, and I appreciate it very much.  One thing I appreciate on this forum is a European frame of reference and experience.  The U.S. standard of care and the impossibility of meaningful integrative initiatives is a constant disappointment to me.

Best wishes for your mother.

Grant


ReplyQuote
grant
(@grant)
New Member
Joined: 2 years ago
Posts: 15
28/04/2018 3:46 am  

Dear Daniel

Thank you for your reply.  I trust you will have safe travels.  Just a couple brief comments for now.

I believe the Nivolumab is at the 3mg/kg level, every 14 days.  It seems my chemo doctor suggests continuing with the Nivolumab even though after one year it is not apparent that it is making a difference.  He believes to just continue it for a second year as extending after a year of no/limited  response has increased total response rate from about 16% to slightly over 30%.  I am somewhat hesitant to build a total approach around it but it is an idea I would consider and check with my doctor.  The metformin, Mebendazole, DCA and adjuncts to reduce side effects were ideas out of those who view cancer as a metabolic disease.  The doxycycline and high dose C are things I saw on this forum about the cocktail.  I would like to hear why Dox and Nivolumab not best together.  The only thing that went through my mind was the damage to gut flora and the importance of gut flora to immune system.

In any event, thank you so much.  I will be anxious to hear from you as you have time after your return home.

best regards

Grant


ReplyQuote
siven01@yahoo.com
(@siven01yahoo-com)
New Member
Joined: 2 years ago
Posts: 2
29/04/2018 7:47 pm  

Hello , 

https://www.drugs.com/drug-interactions/nivolumab-index.html?filter=3&generic_only=

From what I read I know that only patients with metastasis and MMR and / or MSI-H deficiency are accepted for treatment with Nivolumab or Pembrolizumab, because studies have shown that only in these conditions the drugs have maximum effects.


ReplyQuote
siven01@yahoo.com
(@siven01yahoo-com)
New Member
Joined: 2 years ago
Posts: 2
29/04/2018 8:10 pm  

Are ongoing studies in which Nivolumab is used in combination with Trametinib with or without Ipilimumab


ReplyQuote
Alex
 Alex
(@snake)
New Member
Joined: 2 years ago
Posts: 14
30/04/2018 12:27 am  

Dear Grant,

Diet change, did nothing in relationship to cancer
Oxigen, she's taking it... helps only with breathing and that's it.
Metformin only helped with pain,
DCA, That i am not sure.... good or bad, still not sure, there were marker values changes, but can't say if for good or bad.
B1, did nothing good, maybe bad.
Alfa Lipoic Acid, nothing
Mebendazole, nothing.
Vitamin C, increased appettite.
Probiotics, nothing
Budwig Diet, nothing
Oils of many types, did nothing.
Artemisinin the plant/tea did nothing.
Diclofenac helped with pain.
Omeprazole did nothing!?
Others were tried:
Aspirin low and high dose, helps with pain.
Germanium, nothing
Apigenin, nothing
Graviola and Paw Paw, increased blood flow.
Ginger tea, increased immunity, blood flow.
Green Coffee enemas, increased blood flow.
Beta-Glucan, nothing
Resveratrol, nothing
Simvastatin, nothing
HCA, nothing.
Citric Acid, prevented DCA from doing anything, good or bad.
Mebendazole, nothing.
Silimarin, nothing.
Vit D, E, nothing noticed.
So on and so on.

Some drugs or supliments may have done something, but the perception was that they didn't or markers didn't change for the good.

Ergin here, he may be able to add more things he and his mother triend.

However, i only wish to share and not discourage.
My mom has no distant metastasis to other organs, so maybe something helped more than we expected.

It is my fair belief that my mom has had a very healthy diet complete with vitamins and minerals that would make anyone feel more than great. Since she found out she has cancer, she has choosen to never smoke again and she hasn't and she also gave up on meat completely except for fish.

My mom sinceerly states that she has cured cancer of the skin by applying iodine on the skin, where the tumor was.
This of course was a tumor the size of an ant.

So having tumors exposed, can possibly give awesome advantages.

1, you could have sample tissue sent to a lab, anywhere around the world to check for genetic mutations that may be targeted by drugs, i understand that living in america is not all that great from that perspective. My mom had it done for free here in Romania. And thus Tarceva and Zometa were prescribed to her after first line carboplatin.
These appear to help, but the help is sadly limitted in it's capability compared to the cancerous cell's ability to addapt to changing situations.
We are now curious of itraconazole, it appears to help her considerably, time will tell for sure as today she took her 4'th pill.
Getting as much information about the tumor will give your oncologist a more clear view about the best protocols to be implemented.

2, take photos of your tumor, with high quality camera, to be able to compare over time, see if your visible tumors are being fed by large blood vessels or not, if they are visible with ease, this should indicate that your cancer is possibly more vulnerable to anti-angiogenesis therapies.

3, seeing is believing, so if the visible tumor grows, and you can see that by comparison in photos, than you have some ideea if things are working as they should or not.

4, you can pretty much target a visible tumor with just about anything, chemicals, light, heat etc.... However don't be tricked, they harm the surrounding tissues too, so if you apply something in your mouth, the gums and teeth and maybe digestive tract could be suffering. IF you want to do something to the tongue, isolate it with a condom, i know it sounds stupid. Use a small sponge to have the substances drawn in it and use that as a reservoir for your drug, have the sponge then placed in a condom, and slide the condom on your tonge, after that be sure to place the sponge so that it touches the tumor.
This achieves some level of isolation of your boddy from the drug but also ensures that the drug is delivered between those cancerous cells, so that they die. heck, even table salt is toxic in sufficient quantity, that's why it stings and burns.

While i wouldn't want you to think i'm some expert or wizzard, i have to remind you i'm not a doctor, and have never ever received any medical training of any kind.
I'm not sure what exactly is incompatible with what over there in your proposed protocol but Daniel should help more when he can. I'm also interested in his opinion as soon as he can about itraconazol synergies with other things, drugs.
You have to realize that nobody actually knows how to cure cancer for sure but your best bet is your oncologist so do be sure to check with him, however personally i think you should trust your senses too, but not ignore the science, why? because ignoring it will mean you have to come up with new science, and it's kinda late to do that now as a sick person.
I know i wish i was i genius in oncology but, no real time for that, to save my mom at least, motivation came in too late, as is probabbly the case with many.

You have to do what you feel is best for you,
Hope for the best but expect the worst, and prep for it while there is time. Don't forget to live and enjoy time.

Meanwhile, a look at these may be worth it, if not i apologize.

https://youtu.be/OjkzfeJz66o

https://youtu.be/EoIPtsu83VQ + the rest of episodes.

These to my mind are the best videos out there about cancer, and i seen a few more than a lot.

Dr. Siddhartha Mukherjee just made the most sense to me.

Take care of yourself, stay strong, you need it, conserve your ammo, don't spend money on things at random.
In Romania many things are offered trough insurance but then there's the other stuff... and even if you are covered by it, dealin with cancer is expensive in so many ways and it will drain fast if you are not conservative in making the right choice even in lifestyle.

sorry for the long reply, i hope something here is of some help. I wish i could do more.

Alex

Thank you very much,
Alex

Together We Can Do it!


ReplyQuote
Daniel
(@daniel)
New Member Admin
Joined: 4 years ago
Posts: 400
01/05/2018 9:57 am  

Hi Alex,

In order for us to be able to make use of the feedback you shared above, it would help if you could also share the following info related to the supplements/drugs you used: 
- what daily dose you used and how many times/day
- for how long time
- how did you concluded something works or it doesn't
I understand answering these questions take time - so please answer whenever you find the time.
Thank you.

Kind regards,
Daniel


ReplyQuote
Daniel
(@daniel)
New Member Admin
Joined: 4 years ago
Posts: 400
01/05/2018 2:33 pm  

Hi Grant,

Indeed, Doxy and Nivolumab are not a good match due to the negative impact of Doxy on the immune system. In my opinion any treatment strategy should contain at least one powerful component and use that as a priority when deciding what other drugs and supplements to add. Nivolumab comes with both good potential of effectiveness and also of side effects and related risks.  So it's a pity to use drugs or supplements that may work against it. 

If on the other hand you do not want to fully rely on immuno therapy as the only core of your treatments (which I understand and I would do the same), you could off-coarse chose to add a second core to your treatment strategy - I understand you prefer the metabolic one. So now you would have two cores around which the treatment strategy can be build. Doxy would be a good addition to the metabolic treatment but would on the other hand work deeply against the first.

As a side note, there are various strategies that are discussed on this website and that can be chosen as core approach. That includes immuno therapies, metabolic approach, pro-oxidant approach, pH modulation approach, hormonal approach, cholesterol modulation approach, cellular division modulation, and others. Each of these approaches may contain drugs or supplements overlapping other approaches or working against other approaches.

When building around immune therapies such as Nivolumab, here are some aspects I would consider:

When building around metabolic therapies, two major energy production engines have to be addressed:

  • respiration via mitochondria
  • fermentation via cytosol (glycolisis)

Meformin, Doxycicline, Ketogenic Diet, DCA and ALA are fitting well the metabolic approach. However, using only these drugs, will not address well fermentation. Also, I am the biggest supporter of Ketogenic Diet, at least not on long term, because the body finds it's own way to produce glucose at levels even higher than normal via mechanisms such as discussed here  https://www.cancertreatmentsresearch.com/addressing-gluconeogenesis/ while it feeds tumors with the essential building blocks required to build cellular membrane as required for fast division. But this is just my personal view on KD. I like it from a scientific point of view, but not practically.

However, for those using KD:
- I think SGLT inhibitors would be of much help as discussed here  https://www.cancertreatmentsresearch.com/glucose-absorption-inhibitors-to-inhibit-tumor-growth/
- as well as lowering gluconeogenesis  https://www.cancertreatmentsresearch.com/addressing-gluconeogenesis/
- In addition, to lower the potential negative impact of the high fat from the diet, fueling tumor growth, I would use some of the elements of this strategy  https://www.cancertreatmentsresearch.com/reduce-cholesterol-in-cancer-cells-to-fight-cancer/ such as Statin and HCA.

Maybe using the above could be the key for an effective KD diet, that could change my opinion about this approach.

So, from a metabolic point of view, if I would look for what can be added to the list you are already using, I would think on the line of inhibiting fermentation using substances such as:
- 2DG  https://www.cancertreatmentsresearch.com/2-deoxyglucose-2-dg/
- Methylglyoxal  https://www.cancertreatmentsresearch.com/methilglyoxal/
- 3BP  https://www.cancertreatmentsresearch.com/3-bromopyruvate/
- GLUT inhibitors  https://www.cancertreatmentsresearch.com/phlorizinphloretin-a-strong-glucose-transport-inhibitor/
- Maybe Propranolol  https://www.cancertreatmentsresearch.com/propranolol-hexokinase-2-inhibiton-a-similar-anticancer-mechanism-as-that-of-3-bromopyruvate-3bp/ but not for those with low heart beat rate
- MCT4 inhibitors  https://www.cancertreatmentsresearch.com/a-few-words-on-monocarboxylate-transporters-and-their-relevance-in-cancer/
- SGLT inhibitors  https://www.cancertreatmentsresearch.com/glucose-absorption-inhibitors-to-inhibit-tumor-growth/

The first 4 from the list above are more powerful glyco inhibitors, while the others are less powerful but more accessible.

I hope this helps you in creating a coherent approach that you can further discuss with your doctor. Treatment coherence (to address multiple targets at the same time) is essential. For that you will need to spend some time reading some of the articles indicated above. If you have questions please let me know.

Kind regards,
Daniel


ReplyQuote
grant
(@grant)
New Member
Joined: 2 years ago
Posts: 15
02/05/2018 8:35 am  

Daniel

Thankntoubao much for your thoughtful and thorough reply.  I will read all the references and am sure I will have questions.  Having started the process of digesting the information, I am making a list of questions.  

There are difficult, virtually insurmountable problems accessing some drugs/substances in the US.  3-BP and 2 DG are two.  And in fact, Mebendazole is impossible unless money is no object.  And it is unlawful to buy it abroad and have it shipped here.

A major hurdle in U S is finding oncologists who are willing, and frankly, knowledgeable enough, to deviate from the strict standard of care options.  Even the use of things that radically reduce side effects from chemo and radiation, while at the same time having been demonstrated to notably increase chemo and radio sensitivity and effectiveness are essentially taboo.  That I know well, having been decimated by receiving what the doctors characterized as the "worst chemo and radiation" possible.  I went to what is regarded as one of the top cancer centers in US, MD Anderson Houston.  Prior to going there, I looked into four other top national cancer centers and one good local center.  Everyone said the treatment would be surgery, chemo, radiation...period.  MD Anderson was unique in that they said they did not typically do surgery for SCCHN as that was "old school"-- which is why I went there.  They said I had one chance to get rid of the cancer (was stage IV mets with a massive tumor in base of tongue up into oral tongue and right tonsil.  They said if do not get it on first attempt that the outlook was bleak...to put it mildly.  Even though much research has been done with adjuvants within MD Anderson...for example mebendazole in 2002 and Curcumin both with notable benefits on side effect reduction and improved results, I was restricted to just the standard of care.  That was exceedingly discouraging as I had amazed the diagnosing team by outliving their spoken and written predictions of my demise after rejecting their surgery, chemo, radiation standard of care treatment in favor of natural alternatives.  Notably, after 6 years, two of the doctors cannot explain why I am still here.  Both of them were good docs, and have been sympathetic and helpful but essentially could not stray from the rigid standard of care.

Sorry for the diatribe, but the possibility of finding a willing integrative doctor to help guide me is an unlikely event.  Tomorrow I have a Nivolumab infusion and hope to see how far he may be willing to go.  He has prescribed metformin, doxycycline and MBZ...so is able to provide some support, but I don't know how far he is able or willing to go.  He has been very encouraging and supportive of alternative ideas, for which I am grateful.  He is Russian and went to med school there, so he is exceedingly better than US trained (indoctrinated ...couldn't resist making the parenthetical comment), but yet his hands are somewhat tied by our system.  He is a superior Doc, has my full respect and trust but I am not sure how much more he can help with the issues you speak about.

I am going to arrange for a PET/CT scan in a couple weeks to see what current situation is.  My last scan, Feb 21, revealed a 41% increase in area size ( not volume, just 2D area of the tumor in my tongue).  All other locations in neck and lungs were stable.  After discussing this and the results of scan with Dr I should have the information to make a decision on an approach.

Thank you again for your kind and meaningful reply.  I am sure I will have questions.

As a final comment, I am hesitant to put too much emphasis on the Nivolumab as have not seen much to conclude it is doing much after a year.  Recently I read ( I think someplace on your site, but maybe in an article someplace else,) that perhaps a useful approach is to use more drugs or repurposed drugs etc to directly try to influence the cancer in a hard hitting way, and then switch to strategies more focused on building immune system performance and improving the terrain.  Sort of the idea of a one-two punch.  Which struck me as similar to Thomas Seyfried's stress/pulse idea.  So I am inclined to try the metabolic core and add to it as you mentioned.

Thank you again.

Grant


ReplyQuote
grant
(@grant)
New Member
Joined: 2 years ago
Posts: 15
02/05/2018 9:01 am  

Alex

Thanks for your comments...I appreciate them and will write back about them at first chance.  I have done many of the things you listed your mother has done, over the last 6 years and many other things as well.  However, I rarely noticed any specific results.  The most significant result is that I am still alive against all the odds doctors have given me including four or five expected times to live.  But which things contributed in what degree...I have no clue.

The tumor in my tongue is touchable with a finger but completely below the surface, so pictures would not show it.  But topical applications could be possible.  If I had my preference I would opt for high intensity focused ultrasound (HFUS) but it is not done in US for head and neck cancer.

That your mother has not had mets is certainly a positive global criterion, even though individual things may not have provided noticeable results. Best wishes to her.

Grant


ReplyQuote
Shanti
(@shanti)
New Member
Joined: 2 years ago
Posts: 25
06/05/2018 4:06 am  

Hi Grant,

If you are interested in 2DG, I was able to purchase some overseas without any trouble, I supplied the details in the thread on this post:  https://www.cancertreatmentsresearch.com/drug-cocktail-that-could-double-the-average-survival-time/#comment-7340.  

Although purchasing medications from overseas, 0n-line pharmacies is technically illegal (depending on the medication), I have never heard of a case where customs or the FDA went after an individual (unless they were doing something off the wall, like trying to purchase loads of opioids or testosterone). The worst I have heard of is customs seizing the item and not releasing it, but I think even this is rare for medications that are not high risk.  Here is an interesting article from WebMD on the situation:  https://www.webmd.com/healthy-aging/features/letter-and-spirit-of-drug-import-laws#1.   I'm not saying resorting to an online, overseas pharmacy is risk-free, but it is a calculated risk that could be considered. 


ReplyQuote
Shanti
(@shanti)
New Member
Joined: 2 years ago
Posts: 25
06/05/2018 4:31 am  

Hi Daniel,

It has been my thought that, although not harmful, it may not be optimal to pair DCA with mito inhibitors such as doxycyline or with antioxidants, especially those that may be active in the mitochondria.  What are your current thoughts on this? A 'no, no' or 'ok' but if you really want to optimize DCA these aspects should be considered?  Thanks in advance.  - Shanti


ReplyQuote
Shanti
(@shanti)
New Member
Joined: 2 years ago
Posts: 25
06/05/2018 4:43 am  

Looking at the MOA of Doxy: "chronic treatment with the FDA-approved antibiotic Doxycycline effectively reduces cellular respiration, by targeting mitochondrial protein translation. The expression of four mitochondrial DNA encoded proteins (MT-ND3, MT-CO2, MT-ATP6 and MT-ATP8) is suppressed, by up to 35-fold. This high selection pressure metabolically synchronizes the surviving cancer cell sub-population towards a predominantly glycolytic phenotype, resulting in metabolic inflexibility. We directly validated this Doxycycline-induced glycolytic phenotype, by using metabolic flux analysis and label-free unbiased proteomics." ( http://www.oncotarget.com/index.php?journal=oncotarget&page=article&op=view&path%5b%5d=18428&path%5b%5d=59195)

It seems that doxy could limit DCA effectiveness, but not the other way around.  Also just noticed on your DCA post that metformin can actually help with DCA effectiveness. 


ReplyQuote
Page 1 / 3
Share: