Caffeine & Research

Caffeine for the CauseJust so you know, the lovely folks at Honey Dew Donuts donate to the Cause all year ’round, not just in October. They give $100,000 every year to the National Breast Cancer Foundation to pay for free mammograms, and in October, they encourage sleepy New Englanders to do the same. Last year, when I was getting radiation, I was pleased to stop in at 6:00 a.m. every morning for my shot of caffeine-for-the-cause before I began the drive to the Big City for my daily frying at 7:00 a.m. Now, just over a year later, I had my most recent cup of early morning caffeine from them yesterday as I drove to U Conn Health Center for what was to be my final visit as a fatigue research subject.

To review the full panoply of my bitching and moaning about Cancer Related Fatigue, visit this fatigue link for a list of my previous posts on the subject. Regular readers already know that I’ve been participating in a research study on a potential treatment for CRF. As promised to my friend, Professor Flavin, I’m going to explain what this is all about, so prepare yourself for a crash course in Scientific Research 101.

First of all, here’s a link to a description of the study at the National Cancer Institute website: TRH for Cancer Related Fatigue. And here’s a link to a downloadable PDF that you can give your doctor. Now to ‘splain it. This is a double-blind, cross-over, Phase II trial. That means that the researchers are testing a potential medication only to determine whether it has any effect on the problem or condition they are hoping to treat. They are administering the medicine in such a way that neither they nor the research subject will know whether the drug itself or a neutral placebo is being given to the subject at each visit, but they will be able to determine that later when they interpret the results. When they finish the Phase II trial, they will start a new project which is, logically enough, a Phase III trial, in which they will be able to administer the medication in pill form that the subjects can take themselves each day for, say, sixty days, to see if it makes any difference. Phase III and Phase IV trials are the ones that we often hear about in the process that may lead to FDA approval of a new medication.

This study is being conducted by two physicians who are psychiatrists at the University of Connecticut Health Center, which is a large hospital in Farmington, CT that is affiliated with its medical school. One of them, Dr. Kamath, helped write the informational section on CRF for the National Cancer Institute website and treats patients for cancer related fatigue and depression at the U Conn Cancer Center. The primary researcher is Dr. Andy Winokur, who is the Director of the Neuropsychopharmacology Treatment, Research and Training Center (NTRTC) in the Department of Psychiatry at the U Conn Health Center and a full professor. I can personally attest that he and Dr. K are very nice, accessible guys who have been nothing but kind and responsive in all my dealings with them. They are trying to find out if a substance call thyrotropin-releasing hormone, lovingly known as TRH by its close friends, could be an effective treatment for CRF. If you are currently being treated for breast cancer, prostate cancer or really any other kind of cancer, or have been treated for it in the past year or two, and you are suffering from fatigue, then by all means click on one of the above links, where you will find their email addresses, and shoot off a message to one of them. They still need to screen several more folks for this Phase II trial so they can move on to the Phase III study.

Thyrotropin or TSH, which stands for thyrotropin stimulating hormone, is a substance secreted by the pituitary gland that in turn regulates the thyroid gland. TSH production is controlled by thyrotropin-releasing hormone (TRH), which is manufactured in the hypothalamus. The thyroid gland in turn creates its own hormones, which are very important because they control cell metabolism throughout our bodies. So, TRH is an important hormone in helping our thyroid gland to help our bodies achieve and maintain homeostasis. Drs. Winokur and Kamath have found in previous research that, in particular, there appears to be a potentially therapeutic relationship between TRH and the function of our immune systems that may have a direct bearing on Cancer Related Fatigue. This research relates as well to a study I have cited in previous blog posts that found actual marker substances in the immune systems of breast cancer patients that correlated with those women who were suffering from CRF. Therefore — are ya still with me?? — Drs. W and K think that TRH might be useful in treating CRF. Whew. I hope you realize that, despite the fact that I have a master of science degree, it requires an extreme act of will to get myself to write like this because of my own CRF, not to mention my cancer-therapy associated cognitive change, which you can read about in my last post.

Honeydew DonutsSo, anyway, I’ve been driving to Connecticut on Friday mornings for the past few weeks to get some blood tests and to receive an IV infusion of either saline or saline containing TRH. The study requires only four infusion visits in total. I also did an initial intake visit to see if I was an acceptable subject for the study. That involved an interview, an EKG and some labs that included blood counts and a check of my thyroid function. The infusion visits themselves take about three hours, for which they pay me $75 a visit, plus they give me a $5 voucher for use in the hospital cafeteria, which is pretty good. Between visits, I have to soak some small cotton cylinders in my saliva and save them in the freezer, and fill out a survey about my fatigue level each evening. That’s it. If you are within driving distance of Farmington, CT, I urge you to look into participating in this. Feel free to email me first to ask more questions at

As it turned out, I felt a little faint for about five minutes while I was getting my second infusion last Friday. Nothing big. I’d been out having fun at Tickled Pink the night before, a breast cancer fundraiser for a local hospital, and I got woken up at 3 a.m. by somebody’s dog and didn’t get a full night’s sleep. So, I was a tad peaked. After the IV was finished, I was given another EKG to make sure I was okay. I was. The docs treat us research subjects very conscientiously, however, so they decided that I’d had enough. At yesterday’s visit, they told me that they were releasing me from the last two infusion visits. They assured me that they did get usable data from my first two visits, so it was still worthwhile, which made me feel better. After I got the word yesterday, I got a free consult with Dr. Kamath about how to treat my fatigue now that I was done with the study. Instead of going back on Provigil, he suggested I try taking a 300 to 450 mg daily dose of Wellbutrin XL, an antidepressant that in larger doses has been found to help CRF. And if that ends up not working, I can always go back to Provigil or its cousin Nuvigil. They even have some coupons for a free month of Nuvigil that they will send me. Whatever happens, both docs have offered their continuing assistance and support. For free. They’re just a phone call or email away. Research visit: $75. Expert long-term support: priceless.

So, I kinda flunked out as a research subject, but now I’m onto what I hope will finally be a way out of this bloody fatigue. And I feel good about being a small part of something that might help others suffering from CRF in the future. We’ll see. In the meantime, Professor Flavin, I hope you will at least give me an A for effort.

Please click on the post title or the comment link below to post a response.

This entry was written by Kathi, posted on Saturday, November 07, 2009 at 01:11 pm, filed under Fatigue, Health & Healthcare, Making A Difference, Radiation, Research and tagged , , , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

4 Responses to “Caffeine & Research”

  1. Mos def, A. Wow. Thank you for this, Kathi. Though a bit scary, re: reaction at second infusion. (Perhaps a dumb question, but do you think you were getting the drug?)

  2. Kathi,
    I thought I’d researched everything… and never realized there is actually a title for cancer-related fatigue! About 14 months ago, I had a CAT Scan of my brain performed at a Teaching Hospital… long story, but they told me to see my PCP, or Oncologists, about having an MRI of my brain, because a lesion was identified on the Pituitary Gland. When I asked the PCP, and Oncs, about it, they scoffed at me, and said that Pituitary Lesions are a common occurance. I have been saddled with extreme fatigue, headaches, body aches, chemo-brain… big-time. I feel like a useless, lazy, worthless sub-human… and have watched my life crumble into little pieces, while living and breathing… but so incredibly exhausted… and it gets worse with time… I keep waiting to feel better, while my body has become old, achey, and swollen… among other things. I sometimes think I’m crazy, as these doctors have convinced me to believe I am supposed to be back to normal… and that none of the disgusting treatments had anything to do with my present condition. They claim it was all pre-existing… I was never like this in my life… and have suspected thyroid issues. My PCP abandoned me in my crisis, and I returned to the care of my original Oncologist and Surgeon.
    I am so excited to read this testimony about Cancer-related fatigue due to Thyrotropin Releasing Hormone, as a possible cause, and a definition to the pain and fatigue!
    I cannot express how much it means to me to have found this information!
    Thank you, thank you, thank you…
    I’ll be seeing my Oncologist in September, because I post-poned the doctor visit… my attitude being, why bother, if they just upset me and waste my time?
    I’m looking for a new PCP… in the meantime, but this is wonderful… I can download the information, and call my misery… Cancer-related Fatigue…
    Thank you 🙂

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