[SPIRAL SCAN RESULTS]

BJ,

I have a met to my right adrenal gland. It hasn't produced any symptoms I know of. My onc. said that the adrenals are one of the most likely places to get mets from NSCLC. My last CTs showed no change in the adrenal met.

I'm scheduled for another set of CTs in less than 2 weeks but I'm trying not to think about it yet.... This time is a biggie for me as I expect to either validate or invalidate a very non-traditional therapy I'm been on for about 6 weeks now. Sorry for rambling on.

Dave S

[Hall pass to go to Disneyland please!!!!]

Hi Lisa,

Since you are going to Disney, can we assume a new picture will appear? I see your current photo was taken at Disney last year...

Just kidding, I like your current photo. Someday I'll figure out how to reduce the size of one of me enough so I can have a photo too. I love when people have a picture of themselves on the board. I guess a picture IS worth 1000 words.

Have a great time.

Dave S

[Wonderful Wife of 43yr's and 9 children dxed sclc stage 4??]

How very odd. I live in upstate NY and recently traveled to Wichita KS to see a Dr for the treatment I have been wanting for over 1 1/2 years. Now I see there are 3 of you in this thread all from Kansas. How very odd indeed....

Dave S

[CT results & more tests]

Kat,

9 months PRIOR to my NSCLC diagnosis I started having transient blind spots. They started in the center of my field of vision and gradually changed shape to a "boomerang" like shape and then slowly drifted out of my field of vision. Total duration always 30 to 45 minutes. I saw opthamologists and neurologists who ran many tests but found nothing.

I still have them occasionally but just ignore them. They pale by comparison to the other collateral damage I have accrued aloing the way. My guess is they were and are somehow the result of some component of blood chemistry which is out of whack. As I said I've never found a cause (after Brain CTs, MRIs, TEEs. EEGs and even a brain angiogram). At this point I have bigger fish to fry...

If youir symptoms are similar perhaps yours too will defy diagnosis. Just a thought.

Best Wishes,

Dave S

[Carbo/Taxol Severe Joint/Bone Pain]

Diane,

I was on 21 day Taxol/carbo for a total of 10 cycles. I also had the nasty bone/joint pain you refer to. My Dr's seemed to think this was "normal". I took percoset and got relief from the pain. It helped me tolerate the pain when I started to consider it a sign that the chemo was "working".

Best Wishes, Dave S

[Looking for experience with IV vitamin C]

Melinda,

Thanks for the info, but I was looking for anyone on this board who has experience with IV C. I already have a Dr who perscribes the IV C for me (although he's not in NY).

I believe Cheryl has taken some IV vitamins but I don't think she has taken the mega doses required to produce the pro-oxidant effect using C. It takes a lot. I'm currently taking 50 grams (that's 50,000mg) twice per week.

Dave S

[Supplements]

I'm delighted to see others posting the supplements they take or believe in. My list has changed numerous times as my circumstances have changed and as I have encountered new data. My current list is as follows:

alpha-Lipoic Acid , 600mg

Beta Carotene , 25,000 IU

Biotin , 3000mcg

Calcium , 1110mg

Celebrex , 400mg

Co-Q10 , 200mg

Flax seed oil , 4000mg

Folic Acid , 800mcg

Glutamine , 30g

Grape Seed Extract , 150mg

Green Tea Extract , 450mg

Magnesium , 266mg

Melatonin , 15mg

MGN-3 , 1000mg

Selenium , 400mcg

Vitamin A , 24,000 IU

Vitamin B12 , 1000mcg

Vitamin B6 , 100mg

Vitamin C , 18,000mg

Vitamin D , 400 IU

Vitamin E , 1200 IU

Zinc , 50mg

Quantities are daily totals. Some are taken in split doses. I'm currently considering some changes but haven't decided for sure yet.

Thanks again for the info. I'll be checking into the things I'm not already familiar with.

Dave S

[Not much posting here, is there?]

Grumpy, Thanks for sharing your info.

Dave S

[Supplements]

Hebbie,

My wife has been on Synthroid for about 15 years. A few years ago her TSH levels became erratic and she was told also to take the synthroid at the same time each day and at least 1 hour before eating which helped with the erratic TSHs. BTW she recently switched to Armour Thyroid (contains T3 also) from Synthroid (T4 only) and is very happy with it. Something to keep in mind in case your response to the Synthroid ever starts to fade.

Best Wishes, Dave S

[Copper Therapy (TM)]

Cary,

Thanks very much for posting the info. It sounds like I should be more interested than I previously thought in copper reduction therapy. I'll certainly do a bit more research on it. Of course since I have one of the worlds most conservative oncologists, I'll have a difficult time getting a Rx (assuming one is needed).

Thanks again, Dave S

[Copper Therapy (TM)]

Thanks for the info, Hebbie. I have read about this in the past but my impression was that it is strictly an anti-angiogenisis therapy. My feeling has been that suppressing new blood vessel formation limits the size of individual tumors but does NOT stop their formation or reduce existing tumors. For these reasons I have not put much emphasis in this area. I do take Celebrex (400mg/da) to discourage new blood vessel formation.

Do I have the right take on all this?

Dave S

[Not much posting here, is there?]

Grumpy,

Our goal here is to help each other. Anyone who feels they have a treatment regimen which helps is encouraged to share it here.

If I understand you message correctly, you feel you have been helped by some non-Rx meds of some sort. You are invited to share that info here so that others might benefit from it or at least be given the opportunity to evaluate it for themselves.

Regards, Dave S

[Why is he so tired?]

Tess,

In December of 2003 I started on Iressa. Three weeks later my breathing had deteriorated so much that I was at risk for having to be put on a ventilator. At that time I started radiation to shrink tumor masses which weere compressing the main bronchi to all 3 lobes of my right lung. After 15 daily treatments I started back on chemo. I was never so sick before, ever.

My point is that the nasty effects of radiation take a long time to go away, and when you start chemo and add those side effects you can easily get to a horrible level of cumulative side effects. In my case I declined further chemo because I felt the treatments were killing me. It took me about 4-6 weeks to begin to feel as if I might survive. In my case the Dr's didn't seem to place any importance on how I was feeling, they only cared about their area of treatment, (ie.rad. dr. only cares about radiation and med. dr. only cares about chemo, etc.).

It's likely your husband has simply reached tilt with the accumulated toxicities of the radiation and chemo added together. I know I did. In my case I went on heavy doses of anti-oxidants to help my body recover (my idea, not the dr's), and it seemed to help some. I'm still on them.

I had Neulasta and Procrit because my blood counts were so low but I can't say they helped me to feel any better. I just don't know.

One of the many things I hate about this disease is the way it keeps forcing us to choose between undesireable options....

Regarding the port: I went 18 months without one thinking "I'm almost done with chemo". Finally I gave in and got one. It makes life easier and I recommend it.

I hope Rob feels better very soon, Dave S

[Not much posting here, is there?]

Ginny,

First of all I have been through a fair amount of chemo (mostly Taxol/carbo) and radiation. I did have a brief (6 months) remission. Through all this I gradually expanded the supplements I take (up to 22 at last count I think).

After the shock of my initial diagnosis at stage 4 and the grim predictions about my longevity I decided to look for other options for the day when traditional treatment no longer seemed appropriate. My very top choice has always been IV vitamin C. I would have tried it much sooner but I could never find a physician to cooperate ("it's not approved, etc."). Finally I found a clinic which not only offers the treatment but is headed by the Dr widely regarded as the world's leading authority on the subject. So that's where I went.

I'm currently taking 50 grams by IV 2 times per week. Side effects are nil. I feel 100% better now than I did prior to starting treatment just a month ago. Two months ago I couldn't walk more than 30 feet without resting. I was on oxygen. Today I have given up the oxygen and move around and even climb stairs without restriction. I get pain at the site of my tumors after infusion but I regard that as a good thing and a by-product of tumor necrosis. Please understand I can not yet prove that the IV C is responsible. But I have strong suspicians.

The therapy is based on the fact that one of the differences between normal cells and cancer cells is a huge (10 to 100 fold) difference in their catalase content. This substance is required to neutralize peroxides and aldhydes. Without sufficient catalase these toxic substances build up in the cancer cells and kill them in a short time.

Vitamin C is antioxdant in small quantities but becomes very pro-oxidant in large quantities. So the goal of the IV C therapy is to induce the pro-oxidant production of peroxide in the cancer cells which they are unable to neutralize (and therefore die). One of the attractive things about IV C is that it kills cancer cells directly and in a very short time. Chemo and radiation seek to damage cancer cells so much that they can't reproduce, but they don't kill them.

The C also produces a bunch of beneficial effects I won't go into here. There's a lot of info available on the web but you have to dig for it. For a quick non-technical overview take a look at

http://www.canceraction.org.gg/index2.htm

This therapy has actually been through stage 1 and stage 2 clinical trials at a mid-western university, but since it was privately funded the money ran out before stage 3 trials could be completed. The treatment has been around for years and was first proposed and tested by the Nobel prize winner Linus Pauling.

As you can tell I have high hopes for the treatment. I hope I'm right...

Dave S

[A MUST READ]

Ray,

You are right to be concerned. Actually the problem is even deeper than it appears. The FDA is the controlling body over such things and rules with an iron fist. Although well intentioned, the evolution of things has produced some undesireable situations. Many major pharmaceutical companies have very close ties to the FDA and even volunteer senior personnel to "serve" in influential positions in the FDA. Conversely, FDA officials who are friendly to the major pharmaceutical companies very often get attractive job offers from those same companies. I'm not comfortable casting aspersions, but clearly there are many potential conflicts of interest in such circumstances. If you look at the P&L of the major pharmaceuticals by product line and strip away the amortization of development expense you begin to see the enormous profit of current approved cancer treatments.

The approval process required by the FDA is necessarily VERY EXPENSIVE. This means several crucial things:

1. Funding must be provided by someone. Who can make enough money from a successful result to pay off the expenses and still generate a profit?

2. Any potential treatment therapy which lacks the potential to generate huge future profits can NOT ever make it through the approval process.

3. It is possible for a desireable treatment to be suppressed by a company who purchases the protected rights to it and fears it may undermine the sale of highly profitable current product (like chemo at nearly $10,000 a treatment?).

4. If a common "unpatentable" substance could cure cancer and have no side effects, no one would/could sponsor it to the extent required to get FDA approval (hundreds of millions $?).

I know these are chilling thoughts but I'm afraid they may be valid. I'm not in a postion to prove or disprove the above but I have encountered these facts/opinions from folks who are in a postion to know.

I don't know what the answers to these potential problems are. Perhaps each of us needs to consider the possibility that traditional FDA approved treatments may not encompass the entire universe of options for us.

May we all have the wisdom to choose wisely,

Dave S

[Not much posting here, is there?]

My Dear Friends,

I notice there is very little activity here in the Alternative and Complementary therapy forum. I'm puzzled as to the reason why. Clearly those of us who are not surgical candidates are offered only limited hope by traditional US medicine. Survival statistics are grim and yet certain individuals go on to defy the statistics and outperform the predictions regularly. It's probable that many on this board have knowledge which could help us all if it was shared here.

Does anyone have any idea how we can build participation in this forum and begin to more freely share this potentially life extending info? It's challenging to separate the truly useful information from the fraudulent opportunist marketing which is so abundant out there. Surely we can find a way to help each other in this area. It's not as if we don't have enough at stake.... Any thoughts would be most welcome.

Best Wishes, Dave S

[Totally confused]

Pain can be caused by different things. Any treatment that actually kills cancer cells will cause pain if the tumor load is large enough and the tumor kill rate is fast enough. As the cells die they release toxins into the body which cause pain. Eventually they are cleaned up and the pain disappears. So pain is not necessarily always a bad thing.

I had significant pain after treatment which later was shown to have resulted in complete remission. I'm on a different therapy now since my progression and this time I welcome the pain.

Dave S

[newcomer husband has stageIV lung]

In June of 2002 I had 1 cycle of carbo/Taxol then radiation, hip surgery and then back to chemo. I also developed a rash like you describe after the 2nd chemo. I talked to the onc. about it and they said they didn't think it was related to treatment.

In my case it continued to worsen through cycles 2-3 and then went away. I had a total of 8 cycles at that time and it never returned. I used Aveeno (sp) soap and such to minimize the symptoms and waited patiently for it to go away. I suppose it was some sort of allergic reaction but we never figured it out.

I hope it goes away quickly. Best of luck, Dave S

[2 CT Scans on Monday for pain - prayers please]

FWIW, When my chemo was finally starting to shrink my 5cm tumor down to nothing, I had a lot of back pain. I complained to my infusion nurses about the pain and they suggested I might want to consider the possibility it was a good thing (reflecting tumor kill and the toxins released by necrotic tissue).

It turned out it was. In my case a full remission resulted. Since then I've had a progession (rats!) and am now involved in a non-approved but very appealing therapy. Once again I have back pain at the site of the known tumors which always coincides with the timing of my alternative treatments. Needless to say I'm hopeful it's a GOOD thing once again. I can't say whether others have had similar experiences or not. I've never asked.

Best Wishes and prayers to you, Dave S

[Demerol for pain.. anyone else?]

I think pain meds affect everyone differently. I had morphone after hip surgery to pin my cancer weakened femur and it didn't work for me despite very large doses. The pain med of choice for me is generic Percoset. It worked wonders when I had intense bone pain after later courses of chemo.

Now I'm on large doses of IV vitamin C and I get significant pain at the tumor sites starting 6-8 hours after infusion for a day or so (twice a week). I take the Percoset and get along just fine. Sometimes I feel a bit "loopy" but the worse the pain is the less "loopy" I feel. If I couldn't control the pain I would be less inclined to take the very treatments I hope will succeed where chemo and radiation have failed.

I think everyone has to try the different pain meds to see what works for them and go with that.

Wishing pain-free for all of us,

Dave S

[Hi after 18 month absence]

Cheryl and Jack,

Thanks for the reply. It sounds like what you did was an antioxidant (nutritional) therapy. I do that too, with many oral supplements and I'm convinced that they have been a signifcant factor in my survival to date.

What I'm referring to here is a bit different though. I'm referring to the technique described briefly in http://www.canceraction.org.gg/inext.htm. I've been researching for nearly 2 years and this is my favorite alternative to traditional chemo and radiation for non-surgical candidates like me. It isn't that chemo and radiation don't work but rather that they seem to be more often temporary rather than permanent fixes and they have significant accumulative toxicities (at least for me they have). The science behind this is extremely appealing to me. I find it quite compelling. Most alternative therapies don't appeal to me because I can't understand what they do or how they could work.

Anyway thanks for the info and my very best wishes to you and all the others who were kind enough to reply.

[Looking for experience with IV vitamin C]

Hi All,

I've recently started IV vitamin C after experiencing increasing side effects with chemo. Has anyone here had any experience with IV C?

Dave S

[Hi after 18 month absence]

Hi all,

I was on the predecessor board and have been out of touch for a year and a half. I'm now 2 years into a life expectancy of 6 months at the time of my diagnosis. I've used supplementation as well as traditional radiation and chemo. I was diagnosed at stage 4, so surgery was never an option.

I recently started IV Vitamin C. I'm wondering if anyone else has experience with intravenous vitamin C as a treatment protocol? If so, would you please contact me? I'd like to compare notes.

Thanks, Dave S