Wednesday, April 28, 2010

Hyperthermia Clinic in the New York Metro Area?

Does anyone know of a hyperthermia clinic in the New York metro area? I am most eager to add it on to the chemo and nutritional support I am doing.

Chemo went fine yesterday. Dr. Linchitz says he sees me putting on some muscle and that we are going in the right direction. Tally ho! Let's hope so. A long way to go to get back to normal weight, but going in the right direction is the key of course.

Edema in legs nearly gone after 2 weeks. Nurses impressed. It is probably the intravenous albumin along with everything else that is doing it.

Thursday, April 22, 2010

Biofocus Chemosentivity Testing

Biofocus is a laboratory in Germany that offers a chemosentivity test that allows you to know which chemotherapeutic agents will work most effectively against your particular cancer cells. My results are due back in 1-2 weeks, and I can't tell you how excited I am to soon have this knowledge as a resource in my cancer management plan. The traditional approach is to make the patient the petri dish, and see over time--sometimes 6 months per drug if not longer--if a chemotherapy drug works. The Biofocus kind of testing in a matter of 2-3 weeks accelerates the knowledge that might otherwise take years to discover if the patient continues to remain the petri dish. Let the lab technicians first do their testing to see what works, and then jump ahead of wasted months to years of ineffective therapies--and cancer patients most often do no have that kind of time.

We all talk about biochemical individuality, but cancer therapy does not incorporate it unless this kind of testing is done for each cancer patient. And, such a test would save money for the healthcare industry, because patients would arrive at the correct drugs faster. It boggles the mind how such testing is not a standard part of cancer care.

Think of this kind of testing as a kind of GPS for your cancer drugs. You will arrive at the place you want to be more directly and faster. There are other places that offer this kind of testing as well, and I cannot say which test is best. But some sort of testing for chemo drug efficacy should be done for all cancer patients if we truly want to call the medicine we practice in this country both compassionate and state-of-the-art.

Hydrazine Sulfate

Does anyone, patient or practitioner, have experience with hydrazine sulfate? The research is impressive, both for cancer and cachexia, the latter being an especially urgent concern of mine (I am 151 lbs, usually 190 or more):

Dr. Joseph Gold discusses hydrazine sulfate

The Syracuse Cancer Research Institute

I would appreciate any feedback. And where does one get it? A compounding pharmacist? Dosage?

Love,
Robert

Chemo Went Fine Today

I receive chemo twice a week in the IPT program for now, and it's Tuesdays and Thursdays. Today's session went fine. Got my blood sugar down to 39 before they began infusing the Folfari drugs intravenously.

Side effects: it seems that a day after the IPT, I am a bit dizzy, less sure on my feet, and that seems to be gone after 2 days. Also, they give me an anti-nausea drug that is a steriod before treatment, and it makes it hard to sleep the night after chemo sometimes. So, those are the only side effects I have noticed overall, and not much to complain about. No nausea or bodily aches. But again, that is because this is 10% the dose, not because I have a strong constitution.

And: does anyone know the best place to get organic liver? I need to eat a lot of it and it is hard to find around here. Thank you.

Love,
Robert

Tuesday, April 20, 2010

This Can't Be Chemo

Sung to "This Can't Be Love":

This can't be chemo 'cause I feel too good
No chills, no aches and no pains
This chemo doesn't torture like it could
I've thrown off medicine's reigns
I don't throw up
Or lose my hair
My doctors and nurses
Really seem to care
This can't be chemo 'cause I'm feeling fine
And hoping health will be mine

Second chemo treatment today, and it went well. They got my blood sugar down to 41 before they pushed in the Folfari chemo drugs, again at 10% the normal dose. No side effects, except from the momentarily induced hypoglycemia-dizzyness that goes away in 10 minutes (not a good time to learn new dance steps). But the question is, will this low dose targeted therapy work for me? Are the cancer cells gobbling it up, with their 16x greater number of insulin receptors than normal cells, after they gave me 5 units of insulin? I hope so. My chemo sensitivity tests come back from Germany in 2 weeks--more info to work with. For a book about this therapy, I am reading The Kinder, Gentler Cancer Treatment. Short, to the point, with a chapter written by Dr. Linchitz.

I do feel good--but then, after the chemo, I received 20 grams of vitamin C and 1 gram of glutathione intravenously, and 100,000 IUs of D because the latest test shows my vitamin D is 41--and Dr. Linchitz wants all his patients above 70, which is right on in my book. My D was in the 20s 3 years ago, and after taking 10,000 IU or more orally a week of D in olive oil, I am still low! Wow. Great to get more D. We know it is a risk factor for many cancers, insulin resistance diseases, and of course poor bone health. Have you checked your D lately?

So maybe it is all that C, D and Glutathione that has me feeling fine. I am a big fan of intravenous glutathione for yours truly--makes me feel so good. When I found out it was available, I asked it be added to the regime. They checked with the doctor, and "sure!" was the response. What else can you ask for in terms of patient care?

Last night sister Gigi, who is my main caretaker, brought over some DELICIOUS bone soup with a recipe from Donnie Yance made by a family friend, Archie. Archie is a caterer and who went all over Chinatown in NYC to get all the Chinese herbs for it. Thank you, Archie! I could live off this bone marrow rich, blood building soup.

Tomorrow Sherri and Sue visit. Time for rest. Today was a big day, and one filled with gratitude. Thank you, everyone. I feel more love now than I ever have in my life.

Sunday, April 18, 2010

Sanoviv

Anyone have experience with the Sanoviv Medical Institute in Mexico? I am getting strong recommendations from doctor friends to go for three weeks to bolster my system.

2 Days of Blood Infusions

My hemoglobin was 7 this past Friday due to bleeding tumor. Dr. Linchintz ordered me to the hospital to receive blood. Received 3 units of blood, and now my hemoglobin is above 9. Ready for chemo this week, and feeling better. Now in my White Plains apartment. I have left New Jersey to be closer to my friends and doctors, and because I can no longer afford the mortgage with the medical bills I have. A studio apartment is easier. Weight up a bit.

Thursday, April 15, 2010

On the Rails of Love

I remember a week or so ago, lying in my hospital bed at night, still absorbing everything from the day my mother, her husband, and my sister had all visited. I had also spoken to my brother in San Francisco on the phone. I thought of my father, in Dallas, slated for cancer surgery in the upcoming days. And I felt enveloped in love from and to them all. I felt, lying there in the dark with the machines beeping around me and the hospital noises from the hall occasionally breaking my train of of thought, that I was on a rail, much like like a train, but firmly on the rails of love. And thoughts of death, the end of life, seemed suddenly not so important to me or even real. "There is no birth, no death," the chemist Lavoisier said. "There is only love," a million Beatles songs add. And it is true. Enveloped in that love, feeling the guidance of the connection to those I love the most, there was no fear, no death, no anger, no regrets, none of the erroneous ideas our mind creates like a fun house when we are not in the folds of love. So may we always be there, and may we always experience its peace, its wholeness, and the joy of connection it can bring us. We all want love, and it's all we want I feel. I wish always to be in that place of connection, always. May you always be there as well.

First Day of IPT Chemo

The day went well, and so far, only feeling good after the chemo which ended four hours ago.

The goal with insulin potentiated chemo (IPT) is to first lower the blood sugar until I show signs of hypoglycemia--in my case, on the first day, that number was a glucose of 51. I began to sweat on my brow and have slight palpitations. They then gave 5FU as a push, which running the rest of the Folfari as a drip through my port. It was, well, really cool to be part of the procedure. I felt better after than I began. My vitals were strong at the beginning and end. They then gave me 25 g of albumin to help bring those levels up. I left the clinic feeling energized and hungry. I have eaten 2,000 calories in the intervening four hours, and will eat another 3,000, the desired amount for someone so thinned out by cancer as me, David Vaughn advises me. Something about the procedure really kicked up my appetite. That's extra special good news.

So, lets see in the next days whether there are any side effects. So far, none but feeling better and feeling hungry. Next treatment is on Tuesday, April 20th.

At the clinic, I met more refugees from traditional chemo who were happy to use this IPT chemo which only 10% the dose, and eliminates nearly all the side effects. One woman was proud to show me her hair was growing back, and that the bones in her legs, so debilitated during normal chemo she was in a wheelchair before begining IPT, were now better enough after 13 IPT treatments to allow her to use a walker instead. "Why would you want to do anything else?" she said, saying this is the way standard chemo drugs--which is what we are all taking--should be administered from now on.

Wednesday, April 14, 2010

More on the Tumor

The tumor is a large, slow growing mass in the lower part of my abdomen, and is connected to my vena cava and other vital parts of my anatomy down there, so it could not be removed during the surgery of 3/31/10. The strategy suggested by my surgeon was to go after it with chemotherapy, and then it would shrink enough so it can be removed.

We know also that tumors love and live off sugar, and so the nutritional part of the approach will be to starve the tumor. That means no sugar in the diet (perhaps some fructose now and then--not more than say 10 grams per day), and lots of protein and even more fat to get my weight up, along with some low glycemic index carbs. The tumor can be starved out. We know this from research in other cancers:

Abstract #1
Traditionally, a ketogenic diet is given to drug-resistant children with epilepsy to improve seizure control. Inducing a ketogenic state in patients with cancer may be a useful adjunct to cancer treatment by affecting tumor glucose metabolism and growth while maintaining the patient's nutritional status. A ketogenic diet consisting of 60% medium-chain triglyceride (MCT) oil, 20% protein, 10% carbohydrate, and 10% other dietary fats was provided to a select group of pediatric patients with advanced-stage cancer to test the effects of dietary-induced ketosis on tumor glucose metabolism. Issues of tolerance and compliance for patients consuming an oral diet (consisting of normal table foods and daily MCT oil “shakes”) and for patients receiving an enteral formula are reviewed. Preliminary use of the MCT oil-based diet suggests a potential in pediatric patients with cancer. J Am Diet Assoc. 1995; 95:693-697.

Abstract #2
Effects of a ketogenic diet on tumor metabolism and nutritional status in pediatric oncology patients: two case reports

Journal of the American College of Nutrition, Vol 14, Issue 2 202-208

OBJECTIVE: Establish dietary-induced ketosis in pediatric oncology patients to determine if a ketogenic state would decrease glucose availability to certain tumors, thereby potentially impairing tumor metabolism without adversely affecting the patient's overall nutritional status. DESIGN: Case report. SETTING: University Hospitals of Cleveland. SUBJECTS: Two female pediatric patients with advanced stage malignant Astrocytoma tumors. INTERVENTIONS: Patients were followed as outpatients for 8 weeks. Ketosis was maintained by consuming a 60% medium chain triglyceride oil-based diet. MAIN OUTCOME MEASURES: Tumor glucose metabolism was assessed by Positron Emission Tomography (PET), comparing [Fluorine-18] 2-deoxy-2-fluoro-D-glucose (FDG) uptake at the tumor site before and following the trial period. RESULTS: Within 7 days of initiating the ketogenic diet, blood glucose levels declined to low-normal levels and blood ketones were elevated twenty to thirty fold. Results of PET scans indicated a 21.8% average decrease in glucose uptake at the tumor site in both subjects. One patient exhibited significant clinical improvements in mood and new skill development during the study. She continued the ketogenic diet for an additional twelve months, remaining free of disease progression. CONCLUSION: While this diet does not replace conventional antineoplastic treatments, these preliminary results suggest a potential for clinical application which merits further research.

So: no sugar and less carbs is not the whole story and is not a cancer cure. But I think it is a big part of the healing picture, particularly with people with solid tumors such as me.

What to do when wanting a treat? I have found high quality balsamic vinegar, aged at least five years and imported from Italy, put on veggies and other low carb foods, to be a worthy and delicious investment. Anyone else with fun and tasty low carb and no carb ideas?

Starting Low Dose Chemo Tomorrow

Tomorrow, April 15th, I will begin low dose Folfiri potentiated by insulin at Richard Linchitz, MD's office in Glen Cove. I had a 2 hour consult with him today. He is a caring, brilliant, and open-minded nutrition savvy physician, and knows his nutritional biochemistry quite well.

Thanks to Sue for driving me 2 hours each way to his office,

Love,
Robert

Monday, April 12, 2010

Is Insulin Potentiated Chemo More Effective?

This week I will be meeting with Richard Linchitz, MD to discuss insulin potentiated chemotherapy instead of the standard treatment, which I am thinking of putting on hold as it is so toxic and negates effect of so many standard therapies. By using insulin with chemo, Dr. Linchitz and others have found the tumors take up the chemo more, and you only need to use 10% of the dose to get the same if not better results--so I am told. I will go down and have a 2 hour visit with him this week. He seems really sharp nutritionally and overall.

Had 800,000 IU shot of vitamin D today and other intravenous nutrients through my port. I feel more energized because of it.

Now decompressing, and grateful to be outside all day driving around on such a beautiful April day. Thank you Jonathan for driving me around all day and being such a great friend.

Saturday, April 10, 2010

Finding the Right Chemotherapy

Today, as I receive much advice from physician friends, many say hold off the chemo for this coming Wednesday, and wait until I do testing with Functional Tumor Cell Profiling from the Weisenthal Cancer Group and the Target Now testing to find out which chemo will work best against my particular cancer. Sounds reasonable, and even exciting, to think such kind of pinpointing is available. I found out about the Functional Tumor Cell Profiling a bit late, until after my exploratory surgery, and they need a fresh biopsy to be able to do their tests. I have to find out what getting such another biopsy would involve.

I am eager to get going with some chemo regimin, and don't know how long I can wait being 50 pounds underweight to begin a regimin that will begin to attack the disease process and help me put weight on.

I expect to begin the Folfiri on Wednesday, and follow up on what testing I can at the same time. Due to my underweight, now is not the time for waiting on more testing, but for action against the cancer, however imperfect it may be at the beginning. But I await the final recommendations of my doctor advisors on Tuesday before knowing for sure I will go ahead on Wednesday.

Friday, April 9, 2010

Today

I am a 48 year old single overworking male who had extreme fatigue which I attributed to various causes such as work and stress, but finally went into the hospital to be evaluated. My hemoglobin was 2.9, and basically they didn't know why I was still alive. Nine units of blood later, it was around 10, still low but much better. My weight was also down significantly.

Also, a CAT scan of the upper body, then a colonoscopy, revealed a diagnosis of colon cancer stage 4.

Today, I am recovering from exploratory surgery in my gut 10 days ago, and thankfully now out of the hospital staying with loving friends. Chemo to start next Wednesday, Folfiri. I hope it is effective. Doctors say that perhaps it will extend my life, not cure the cancer. My friends in natural medicine are more optimistic. I remain in learning mode about the whole thing, not knowing.

I was at White Plains hospital in NY, and loved the staff. I feel so blessed by their help. I will continue to work with the physicians and surgeons there and explore my treatment options and share my experiences. That is what this blog will be about.