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Nausea Relief Comes From Shocking Place

nometex-device-202x300I wanted to step back and talk about a shocking new discovery to help me with this chemotherapy-induced nausea that I was introduced to by Dr. Andy Pippas. It is literally a “shocking” find and it is providing me with some real relief at a time when I have needed it the most. After 15 months on Votrient, the nausea, vomiting and my inability to eat has robbed me of energy and left me with a feeling of hopelessness and malaise. On edge. Out of sorts and just irritable. Ask Jill, she’ll tell you.

Dr. Pippas has seen what nausea looks like on the face of a patient. In fact, ALL the patients in his care who are receiving some kind of chemotherapy are probably dealing with some level of nausea if not every day, then certainly around the days when they have some kind of chemotherapeutic infusion. These drugs are very potent and they use their ability to disrupt some kind of pathway to try to keep the cancer cells confused about what good cancer cells do — kill their host.

So, Andy looked at me in his office a fews days ago and said, “You need Nometex.” And he used his thumb and index finger on his wrist like he was adjusting a watch band as he said it. I remember thinking, “Surely he isn’t talking about one of those magnetic bracelets. He better hope that is not the case! I will make giving him hell my next job if that is what he is suggesting.” I love Andy Pippas, but if he needs his chops busted, I’m just the guy to do it. Old age and cancer definitely diminish the effectiveness of a robust, verbal governor. Thankfully, Andy wasn’t trying to slip some kind of snake oil band onto my wrist. He was, in fact, talking about what has turned out to provide me shocking relief from my nausea.

I listened to Dr. Pippas explain the Nometex medical device. He explained that it is a drug-free, non-invasive prescription therapy with no drug interaction complications. The device is designed to be recommended to patients whose nausea and vomiting have NOT been controlled with standard anti-emetic regimens. I knew that my Zofran, Phenergan, Marinol therapies were missing the mark because a person who isn’t nauseated, doesn’t sleep with a vomit bucket on the floor beside the bed. And more often than not, the first hint that I’m sick happens as I first wake up, sometimes in the middle of the night out of dead sleep. The smell of food cooking makes me sick. The thought of eating meat makes me sick. The other things that make me sick are a mystery until they happen. It is almost like air, sometimes, makes me sick. Go figure!

We were told that the device requires a doctor’s prescription and that they weren’t sure how our insurance would treat it and that it would cost, before insurance, between $150 and $180 to get it. I started doing a mental calculation of recent co-pays, colored by my realization that we’ve just come through a lovely holiday that required that we spend some money on gifts for our friends and family, so I really wasn’t interested in forking over that much money for something I wasn’t sure would work.

I’m a writer, for goodness sake, I thought. I’ll just get in touch with the Nometex folks and see if I can get one of them to try out. Then I can give it a good trial and write about my experiences with this new anti-nausea therapy. So that is what I did. Out of complete transparency, I want to disclose that I have received a complimentary sample of the device and have been trying it out for several days during the worst of the nausea I’ve experienced since the cancer diagnosis.

Let me tell you how this thing works: First, let me tell you that it DOES work for me. If I feel nausea coming on, I fish the bracelet out of my pocket, put a drop of gel on the inside of my right wrist and strap the bracelet on in just the right spot, so that the median nerve responds to the light shock it receives every four seconds. The shock goes right up through the palm of my hand and out between my “bird” finger and my ring finger. I guess that must be why they call it the median nerve. It is right in the middle of your hand.

What is supposed to happen inside your body is that the median nerve triggers the “vomit center” of the brain via the vagus nerve. This gentle pulsing stimulation seems to work to disrupt that nausea reflex when I wear the bracelet and have it turned on. And, the best part, is that it works in less than five minutes. It quickly makes the nausea go away!

I will ask Dr. Pippas for a prescription for the Nometex device next time I’m in his office. Now that I know it works for me, I won’t want to be without one in my pocket should the need arise. The other thing I found out during my research of the Nometex device is that patients who have pacemakers should take care to make sure they follow directions for the proper use of the device.

 

January 22, 2014 | Tagged With: chemotherapy induced nausea and vomiting, Dr. Andrew Pippas, Jill Tigner, Marinol, median nerve, nausea, Phenergan, vagus nerve, vomiting, Votrient, Zofran| Filed Under: kidney cancer, renal cell carcinoma | 8 Comments

Drug Side Effects Still Taking a Toll

On the surface it seems we have been successful in relegating my case of stage IV renal cell carcinoma (kidney cancer) into acting like a chronic disease. Something like diabetes. Something you can live with and keep at bay with medication. It doesn’t appear to be actively trying to snuff me out and thankfully it also appears that the oral chemotherapy I’m taking daily, although it is making me very nauseated and giving me constant diarrhea, has done a number on at least two tumors on my left adrenal gland. The tumors are gone!

Jill and I met with Dr. Andy Pippas yesterday morning. Except for a slightly elevated billirubin count, my lab work is exceptional. The higher than normal billirubin is a direct result of my taking the Votrient, which is an oral chemotherapy drug called a tyrosine kinase inhibitor. Our discussion with Dr. Pippas went toward the shocking weight loss I’ve experienced — now almost 100 pounds! He looked at my chart and proclaimed that I’d lost about 10 more pounds since I last saw him just 4 weeks ago. He is concerned, as are we, that I’m really starting to lose muscle mass and tone.

We talked about my nausea a lot during this visit, I guess because it has gotten worse over the past month. I am really having a difficult time eating almost everything EXCEPT Vietnamese food. I’m surviving on a dish at Uptown Vietnam Cuisine called hu thieu, which is a pork broth based soup, similar to pho (pronounced  /f?/). It fills me up. It makes it happy and it is a very healthy dish, according to Beth Bussey, my nutritionist. Other than that meal, I am finding it very difficult to eat a single other thing without feeling nauseated. For a former fat foodie, this is really quite difficult to take.

Dr. Pippas prescribed a timed-release patch containing a drug called ondansetron (trade name Zofran), and the idea was for it to provide me with a constant infusion of the drug for a solid week and keep my nausea at bay. I applied the patch yesterday afternoon and so far, I have been nauseated almost every waking moment. I’m not sure if I’m experiencing a “breaking in” period or whether there is something else going on, but I’m at the edge of a dry heave all the time. So far, today hasn’t been much fun.

Dr. Pippas also told me about another product which is a wristband that gently stimulates the median nerve in the wrist and signals the “vomit center” in the brain not to fire. Who knew the brain had a vomit center? I am doing some research on that product now and may add it to my anti-nausea regime to see if we can get me back to a better place.

So, all things considered, I am in a pretty good position right now for someone with stage IV cancer. I’m not in immediate danger of dying. I’m able to enjoy my family and friends. And, even though I have a real intimate relationship with my toilet, I can enjoy and fairly respectable amount of good time during a day. As I see it, things could be a lot worse. If this is all there is, I’m happy to have it.

The other news is that I’m feeling like I might be able to write again and I hope that will translate into my being more communicative in this blog. Time will tell. In the meantime, I hope you have a fabulous Christmas with your family and friends. If you celebrate other holidays at this time of the year, I hope yours is a great one! For all my brother and sister cancer sufferers out there, hang on, there’s a better year coming.

 

December 20, 2013 | Tagged With: adrenal gland, Beth Bussey, billirubin, diabetes, diarrhea, Dr. Andrew Pippas, hu thieu, Jill Tigner, nausea, ondansetron, oral chemotherapy, pho, tyrosine kinase inhibitor, Uptown Vietnam Cuisine, Vietnamese food, Votrient, weight loss, Zofran| Filed Under: kidney cancer, renal cell carcinoma | 10 Comments

A Piece of Cupcake

Jill and I slept in this morning after a ridiculously early evening dinner with sons, Michael and Adam at Cafe di’ Sol in Atlanta’s Poncey Highlands area near their neighborhoods. All I could think about was the Seinfeld episode where Jerry’s parents often went to dinner in time to get the early bird special. Last night, we got it. The special was looking stupid enough to be the only diners in a great little place, only that was special for everyone else. We looked like idiots. But I really don’t care. I’m the guy who bared his fat stomach for all to see on a video last night. Why should showing up early for dinner with my Seinfeld tip calculator in my pocket cause me even a moment of alarm. It didn’t.

We had breakfast at a great old Atlanta breakfast place near our hotel, The Silver Skillet. I love diners. I just love them, especially ones like this one that obviously has a ton of history to tell. I reached in my jacket pockets and populated a clean napkin with a pile of pills that I needed to take before my procedure that would take place today noon.

Dr. Stapleford gave me a steroid, decadron, to control potential swelling at the site of the tumor, Zofran for nausea, and Zantac for heartburn. I popped them all at breakfast and another 1.5 mg of Xanax. We finished our meal and by the time we got over to Emory Midtown, I was reaching the point that my give a damn was not quite busted but was in serious repair.

We had about 15 minute wait for my “stargate” as some of you have described the machine that we used to do battle with my spine tumor. My sweet Jill tuned the radio into something other than Christmas music — Mexican Christmas music. It was different enough so that I didn’t realize that Rudolph is something like “Rodolfo.” I didn’t really care and that she would take the time to try to appease my listening media was just another reason why I love her so much.

The best news about this day is that the machinery and circumstances involved in bombarding your body with a whopping 16 grays of radiation is really not much trouble. Once I got dosed up enough with the Xanax, I laid there in complete comfort while this massive gantry rotated around me spewing cat scan images and radiation. Absolutely no pain and zero discomfort. I have to have another MRI within the next 30 days and another office visit with Dr. Pippas and with Dr. Stapleford within 6 weeks.

The scariest part of the day occurred on our way back to the hotel, when Jill says I make an attempt to jump out of the car to head out across 2 moving lanes of traffic to get a cupcake at a renowned local bakery. She managed to shut me down, only to have me give her the ugly stare that I reserve only for those people who get between me and some particular food that I want.

I can’t really tell any difference in the chronic back pain I’ve experienced over the past few months. I’m hopeful it will go away. Thank you to you all who have posted on the blog, facebook, my journal and the cool T-shirt that I took with me to Emory yesterday.

Love to you all. I’ll be home tomorrow with my eye on NED mountain.

December 2, 2010 | Tagged With: Adam Venable, Cafe Di' Sol, cupcake, Dr. Andrew Pippas, Dr. Liza Stapleford, Emory Midtown, facebook, Jill Tigner, Michael Venable, MRI, NED, Seinfeld, The Silver Skillet, Voice of the Valley blog, Xanax, Zantac, Zofran| Filed Under: kidney cancer | 19 Comments

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