Alternative Treatments

mikes · Senior User Joined: 25 Jul 2005 Posts: 143

Given the poor prognosis for Stage IV NSCLC, I am surprised that there is not more discussion here about alternative treatments for this terrible disease.

On the other hand, the conventional treatments don't even claim to be curative for Stage IV NSCLC.

There are many treatments out there. They range from treatments that have been subjected to the standard phases of studies to ones that have had limited (non-double-blind) studies to untested, and of course, quackery.

PSK has been used to good effect in Japan for many years and is considered mainstream there.

Melatonin has been used for some time in Europe (especially Italy) and has undergone much testing in this country. Much of the testing has been favorable. It has a much better efficacy than Tarceva, for example.

Melatonin is used at Cancer Treatment Centers of America and at North Central Mississippi Regional Cancer Center and probably others.

Incidentally, North Central Mississippi Regional Cancer Center appears to be a very innovative and successful clinic. They specialize in a particular form of immunotherapy, and Dr. Smith there holds a US patent on the application of IL-2. While they do offer chemotherapy, it is not the main emphasis.

Dr. Sun's Soup has many favorable reports, but much of its testing is considered unsientific. He holds a US patent on the formulation.

All of these therapies have a favorable side-effect profile when compared to conventional treatment.

IL-2 and Sun Soup are quite expensive, melatonin and PSK are relatively inexpensive.

If you check out these few treatments I have mentioned, they seem to have mostly favorable reports when searching on Google. This even includes some mainstream sites.

I wish I would have been aware of these in time to do something about it.

There are a number of supplements of the type found at GNC that are used by some clinicians, mostly as an adjunct to standard treatment.

Of course beware of fantastic claims made by some proponents of fad cures and quacks, but rather, check things out for yourself.

It appears that most any product that improves a person's health and immune system would be a good thing. This includes certain supplements as well as a proper diet. Most mainstream clinics advise this, but some don't put as much emphasis on it as they should.

Used in a complementary fashion, Sun Soup and melatonin appear in a number of studies to reduce the side effects and improve the efficacy of chemotherapy. This can be seen at the NIH site and others.

Of course, beware of people who are selling something. It may be OK, but check it out carefully. In the case of melatonin which has the most scientific credentials, the people testing and using it don't sell it. You can but it almost anywhere.

adr22367 · Experienced user Joined: 17 May 2005 Posts: 78

How is spirulina?

mikes · Senior User Joined: 25 Jul 2005 Posts: 143

It looks like spirulina is used to enhance the immune system, which should be a good thing.

Since posting the first post in this thead, I ran across scorpion venom, which also has good reports.

The reason I am so interested in this subject is that I recently lost my wife to NSCLC. She received chemotherapy, radiation, and Tarceva. We were not aware of all of these alternative treatments. I spent all of my time taking care of her, so I did not have much time to do the research that I am doing now. We were never advised of the grim prognosis we faced. If we would have been aware that her treatments had no chance of cure, we would not have taken chemo. The toxic side affects of the chemo are what got her.

If you check around, you will see that nobody (advocates or opponents of chemo) suggest a possibility of cure of NSCLC Stage IV using chemotherapy or radiation therapy.

There are a large number of natural and herbal treatments out there but no comprehensive list of these treatments and possible interactions between them.

Since the mainstream of conventional treatments have produced no real progress in the last 35 years, I think it time to look at alteratives.

These people are too busy blaming tobacco to have any time left for anything else.

Tarceva may extend life for a short time, but is not the breakthrough people have been hoping for. At least it has a better side-effect profile than chemo and radiation.

The kind of thing I would like to see would be information that tells what combinations of alternatives could be used together to provide the maximum effect. Also, what alternatives could be used with Tarceva for a better result. For example could a person take Tarceva, PSK, melatonin, and spirulina together?

Although her oncologist never suggested any alternative treaments, he repeatedly stated that as long as she was strong, the cancer would have less chance to progress. I think more emphasis should be placed on nutrition. In some sense, some of the alternatives represent nutrition. In most cases they are referred to as nutritional supplements.

Since most oncologists are grossing several thousand dollars per patient per treatment using chemo, don't look for them or the rest of the cancer industry to contribute to the knowledge of alternative treatments.

adr22367 · Experienced user Joined: 17 May 2005 Posts: 78

I'm so sorry about your wife. My Dad's oncologist doesn't even recommend vitamins, they all just want to make money. My Dad tried Tarceva and his tumors grew. Now he's on Carboplatin and Gemcitabine. I have my Mom going out tomorrow to buy melatonin and grapeseed extract. I'm buying astragalus and Natures Herbs Cat 's Claw Bark. I just read an article on the internet about a man who used these and his tumors shrunk 50%, hopefully it will work on my Dad.

mikes · Senior User Joined: 25 Jul 2005 Posts: 143

I am praying for your Dad.

The official Tarceva web site states: Indication and Usage
Tarceva is indicated for the treatment of patients with locally advanced or metastatic Non-Small Cell Lung Cancer (NSCLC) after failure of at least one prior chemotherapy regimen.

So you can see it it unusual to give Tarceva first and than go to chemo. It is normally the other way around.

The side effect profile of melatonin is very good.

Side effects include vivid dreams, headaches, and drowsiness the next day.

Do not take melatonin if you are taking Procardia (nefedipene) or any steroid such as prednisone or dexamethasone.

The studies on melatonin show that it helps limit the side-effects of chemotherapy. It also helps keep the body's clock in sync and enhances the immune system. Most of these studies were done in Europe. Many are published by NIH/NCI. Just Google with 'melatonin nsclc nih' to see the results of the studies.

The doses given in these studies is quite high (10-40 MG before bedtime) and many warn that you should check with your physician before taking such doses. Other studies show that taking even larger doses over a period of time had no adverse side effects.

adr22367 · Experienced user Joined: 17 May 2005 Posts: 78

I am praying for your Dad.

Thank you very much Smile

So you can see it it unusual to give Tarceva first and than go to chemo. It is normally the other way around.

I have to say I'm not too thrilled with his Oncologist, and am thinking of making him switch after the next 2 treatments.

Do not take melatonin if you are taking Procardia (nefedipene) or any steroid such as prednisone or dexamethasone.

My Dad has to take prednisone the night before his CAT scans, should I have him stop the melatonin a week before, or just not let him take that at all?

The studies on melatonin show that it helps limit the side-effects of chemotherapy. It also helps keep the body's clock in sync and enhances the immune system. Most of these studies were done in Europe. Many are published by NIH/NCI. Just Google with 'melatonin nsclc nih' to see the results of the studies.

Thank you, will do!

mikes · Senior User Joined: 25 Jul 2005 Posts: 143

The reason that you should not take melatonin and prednisone at the same time is that melatonin enhances the immune system while prednisone suppresses the immune system. So you see, they will be fighting each other.

You should check with your care giver(s) as to the melatonin dosing and scheduling. I'm in no position to give such advice. It's one thing to take melatonin on your own and quite another to do so while on other medication.

My wife's schedule on Gemzar/Carboplatin was:

Week 1 Gemzar/Carboplatin
Week 2 Gemzar
Week 3 Gemzar
Week 4 Rest

This constitutes one round. After 3 rounds, the rest week was used for a cat scan and bone scan to check progress.

You might also want to check out PSK and Sun Soup. The main problem with Sun Soup is that it is quite expensive and insurance usually does not cover it. Also, it isn't supposed to be all that tastey.

Bless

adr22367 · Experienced user Joined: 17 May 2005 Posts: 78

What is PSK and Sun group?

I won't even allow my Dad's doctor to know he's taking any herbs, he will be totally against it....this is a doctor who doesn't believe in vitamins at all.

My wife's schedule on Gemzar/Carboplatin was:

Week 1 Gemzar/Carboplatin
Week 2 Gemzar
Week 3 Gemzar
Week 4 Rest

My Dad's is
Week 1 Gemzar
Week 2 Gemzar/Carboplatin
Week 3 & 4 Rest

This is one round, he does 2 and then the CAT scan. He also gets a shot of Neulasta the night after the double dose. As of yesterday he also needs to get a shot of Procrit, his blood test came back a bit off.

mikes · Senior User Joined: 25 Jul 2005 Posts: 143

PSK and PSP are extracts of a mushroom called Coriolus versicolor. It is widely used in mainstream Japanese cancer treatment. I have seen a couple suppliers in this country.

Sun Soup or Dr. Sun's Soup is a mixure of herbs, vegetables, and mushrooms. Dr. Sun owns a US Patent on the concoction, and if you type 'sun soup' on Google, you will see that the NIH even has a page about it.

Both PSK and Sun Soup have an excellent side-effect profile. The only side effect of Sun Soup is that some people just can't eat it.

Some people warn of not telling the doctor what supplements you are taking because of possible interactions with your medications.Just because the herbs are not prescription does not mean that they are not powerful.

You need to find a doctor you can work with. (Easier said than done?)

In case you were not aware:

Neulasta is for low white cells and Procrit is for low Hemocrit which is used to build red cells. In my opinion these drugs are much preferable to undergoing transfusions.

One other note: As I mentioned to you on another thread, make sure that the creatinine level remains acceptable (<1.3) or you may experience renal failure from the Gemzar/Carboplatin. This will in turn lower the natural Hemocrit levels because the forerunner of Hemocrit is manufactured in the kidneys.

adr22367 · Experienced user Joined: 17 May 2005 Posts: 78

You need to find a doctor you can work with. (Easier said than done?)

I'm going to meet with an Oncologist in NJ Monday morning, and will ask him how he feels about herbs.

I agree about not having to go through blood transfusions. He has been getting Neulasta since he began the chemo and now just had to begin Procrit.

One other note: As I mentioned to you on another thread, make sure that the creatinine level remains acceptable (<1.3) or you may experience renal failure from the Gemzar/Carboplatin. This will in turn lower the natural Hemocrit levels because the forerunner of Hemocrit is manufactured in the kidneys.

I did tell my Mom to ask about that, and the level was perfect Smile

mikes · Senior User Joined: 25 Jul 2005 Posts: 143

You mentioned NJ in your last post.

The Sun Soup people are in Milford, CT.

[url]http://www.sunfarmcorp.com/[/url]

They don't mention if they allow visitors or plant tours, but the site has their phone number and email address. The mailing address is a PO Box, so I don't know if they give out their street address.

[url]http://www.nci.nih.gov/cancertopics/pdq/cam/vegetables-sun-soup/healthprofessional[/url] has about 8 pages of information about Sun Soup. These are NIH/NCI pages.

I have not contacted Sun Farms, but read somewhere that the cost per month for Sun Soup is about $700.00.

[/url]http://www.herbalremedies.com/cormusex4090.html[url]

is a source for PSK (Coriolus Mushroom Extract).

Good luck finding a new doctor.

adr22367 · Experienced user Joined: 17 May 2005 Posts: 78

Thank you so much, I will look into them. I live in NJ, my parents are still in NY.

I doubt I'll find a doctor who will accept herbal treatments, oh well, as long as my Dad does good on them is all that will matter.

mikes · Senior User Joined: 25 Jul 2005 Posts: 143

I called Sun Farms to see if they had a list of alternative treatment oncologists and they said that they do not have a doctor's list.

I forgot to ask them if they allow vistors.

adr22367 · Experienced user Joined: 17 May 2005 Posts: 78

I called them too, they're an office. She said I can go pick it up if I didn't want to pay the shipping. I'm going to speak to my Dad about this later. Thanks again for all your help.

mikes · Senior User Joined: 25 Jul 2005 Posts: 143

It would be nice if you could have a sample to see if your dad could eat it. If you paid the money and got a full month's supply and he couldn't stand it, that would be bad. I don't know if you can purchase a small amount for taste testing.

I read somewhere that you can add flavoring or seasoning to make it taste better.

On the other hand some people either like the flavor or at least don't mind it too much.

If you read the information on this soup, you probably noticed that it had the best results of anything out there. The critics claim that the trials were too limited to prove anything. This could be true. It could also be envy.

If you find yourself or a loved one diagnosed with NSCLC Stage IV, at least it offers some hope. Of course it may work for some and not others.

The following is from one of the NIH/NCI pages:

"In the toxicity arm, all 5 patients either gained weight or had no change in weight, which was measured twice, i.e., at study entry and 4 to 12 months later. The KPS score, which was also measured twice (at study entry and 3 months later), improved for 4 of the 5 patients and remained stable for the fifth. All 5 individuals were reported to be alive and well 24 months after diagnosis, and none developed a recurrent tumor during follow-up. The actual duration of Selected Vegetables/Sun?s Soup treatment for these patients ranged from more than 17 months to more than 24 months. From these data, the researchers concluded that Selected Vegetables/Sun?s Soup was safe, nontoxic, and well tolerated.[4]

In the survival arm, the average duration of Selected Vegetables/Sun?s Soup treatment was 7.3 months (range, 4-17 months). The median survival time from diagnosis for the 6 patients who ingested Selected Vegetables/Sun?s Soup was 15.5 months (range, 8-24+ months), compared with a median survival time from diagnosis of 4 months (range, 1-12 months) for the 13 patients in the control group. This difference in median survival time was reported to be statistically significant.[4] "

If this is really true, then it is very impressive compared to any treatment I have seen either conventional or alternative.

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