Hi, All - finished Cycle 24 of the Sutent Clinical Trial on Tuesday night.. It was kind of a crappy cycle - Hand-Foot Syndrome was painful and I had it on my hands in addition to my feet. Also very fatigued.
Still, it wasn't the worst it's been and I'm very grateful to be part of it.
I'll have a CT scan late next week and will go down to St. Louis to get the results on February 3.
Thanks for your continuing support.
John
Thursday, January 21, 2010
Wednesday, December 23, 2009
Wednesday, December 9, 2009
Ended Cycle 23
Hi, Folks - I ended Cycle 23 of my Sutent Clinical trial yesterday. This cycle had the usual side effects, but for the Hand-Foot Syndrome wasn't nearly as bad as it has been in other recent cycles.
I've been using DMSO gel on the patches and that seems to help with the burning, but I really think splashing around in the Gulf of Mexico for a week at the end of October helped as much as anything. My feet healed up after Cycle 22 really well and stayed better throughout this entire cycle.
I wonder if Blue Cross would pay for a trip to the ocean after each cycle if an oncologist prescribed it? ;-)
Thanks for your continuing prayers and support.
John
I've been using DMSO gel on the patches and that seems to help with the burning, but I really think splashing around in the Gulf of Mexico for a week at the end of October helped as much as anything. My feet healed up after Cycle 22 really well and stayed better throughout this entire cycle.
I wonder if Blue Cross would pay for a trip to the ocean after each cycle if an oncologist prescribed it? ;-)
Thanks for your continuing prayers and support.
John
Wednesday, November 18, 2009
When Cancer Muddles the Mind By KAIROL ROSENTHAL - from the New York Times
November 17, 2009, 10:23 am
When Cancer Muddles the Mind
By KAIROL ROSENTHALI’ve become one of those people who, by the time I walk from the couch to the kitchen, can’t remember why I’m standing in front of an open fridge. Some people can laugh off these memory blips as old-timer’s disease. But I’m only 37. And it doesn’t feel funny staring into an abyss of cartons and containers unable to remember that I want a glass of orange juice.
Like many thyroid cancer patients, my memory decline began nine years ago after my first treatment. Usually a quite curable disease, my body doesn’t respond to the standard treatment. After multiple surgeries, I’m still living with two tumors lodged in my neck. My doctor does not expect I’ll be cured anytime soon. Nor does he think this will kill me. I face the luckier of two fates for young adult cancer patients: I will hopefully live for decades and decades.
I’m grateful to be alive, but not every moment. Long-term side effects have reconfigured my body and mind. I’m still learning how to adjust. I’ve grown accustomed to my thinning hair, gaunt physique and flimsy immune system. The cognitive side effects of my cancer, however, make me feel old before my time and have tanked my self-esteem.
I bumble through each day feeling my brain slip through my fingers. Before leaving my apartment, I check four times to make sure I have my keys. I have to reread a recipe eight times to grasp the order in which to add flour and milk to a cake batter. After reading a magazine article, I can’t tell you five minutes later what it was about.
I’m familiar with the argument that I.Q. tests aren’t accurate measures of intelligence, and online versions of those tests are supposedly even more fallible. Still, a few years ago, I sat at my computer and took one. I hoped a concrete score on the screen would help convince me that despite my mental potholes, I’m still an intelligent woman. Like any good vice, it was only a quick fix; I felt empowered by my I.Q. score for about 20 minutes. What lasted longer was the shame I felt about needing an online quiz to prop up my self-esteem.
I’ve turned to my doctors for validation. But, like dozens of thyroid cancer patients I’ve spoken with about memory loss, my doctors do not acknowledge my symptoms, much less explain the causes. Chemo is rarely used to treat thyroid cancer. So, is our memory loss caused by our radioactive iodine treatments? Is it the result of our therapeutically induced hyperthyroidism used to prevent cancer cells from growing? I grill my top-notch doctors and scour medical journals for answers. I have only found a 2003 study conducted at the University of Texas M. D. Anderson Cancer Center explaining that thyroid cancer patients reported more memory loss than other cancer survivors and that further inquiry was needed. I have hung it above my desk.
I’ve tried to mitigate the emotional stress of my memory loss. I’m sad that I will quite likely never enroll in grad school or a doctoral program because my brain can’t hack it. But I’ve adapted by becoming a writer and consider the book I wrote the equivalent of a diploma. I’m frustrated when arguing a point that I can’t remember all the facts. But I’ve learned to preface these moments with a disclaimer about my memory, which takes some heat off of the cognitive spotlight. Still, I’m not over the loss of having my brain turn to Swiss cheese in my 30s.
I can’t remember conversations I’ve had with friends a few months ago. But curiously, I have impeccable recall of social situations in which I flush red with brain fog embarrassment. Chatting at a cocktail party a few years back, I wanted to say “rose garden” but couldn’t think of the word garden. It finally came out as “rose gorden.” “Rose Gordon?,” a guy replied in an over-the-top, fake Brooklyn accent. “I remembah Rose Gordon!” Everyone listening cracked up. I’m known for my gift of gab, but that night I kept my mouth shut, fearing the incoherent garbage that might fly out.
Cancer survivors are often known for becoming risk takers and living life on the edge after getting a diagnosis. For me, life on the edge is continuing to put my thoughts and ideas out into the world even though I might fumble miserably and reveal to friends, colleagues and strangers my shoddy synapses. My big leap is not quite as glamorous as running a marathon or climbing a mountain after treatment. But it is hard work just the same. Exposing my rickety mind is getting slightly easier with time. Hopefully I’ll have decades to practice.
Kairol Rosenthal is the author of “Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s” (Wiley, 2009). Dana Jennings, who writes each Tuesday about coping with cancer, is on vacation.
Living With Cancer
Stories from the front lines of cancer treatment and recovery.
I bumble through each day feeling my brain slip through my fingers. Before leaving my apartment, I check four times to make sure I have my keys. I have to reread a recipe eight times to grasp the order in which to add flour and milk to a cake batter. After reading a magazine article, I can’t tell you five minutes later what it was about.
I’m familiar with the argument that I.Q. tests aren’t accurate measures of intelligence, and online versions of those tests are supposedly even more fallible. Still, a few years ago, I sat at my computer and took one. I hoped a concrete score on the screen would help convince me that despite my mental potholes, I’m still an intelligent woman. Like any good vice, it was only a quick fix; I felt empowered by my I.Q. score for about 20 minutes. What lasted longer was the shame I felt about needing an online quiz to prop up my self-esteem.
I’ve turned to my doctors for validation. But, like dozens of thyroid cancer patients I’ve spoken with about memory loss, my doctors do not acknowledge my symptoms, much less explain the causes. Chemo is rarely used to treat thyroid cancer. So, is our memory loss caused by our radioactive iodine treatments? Is it the result of our therapeutically induced hyperthyroidism used to prevent cancer cells from growing? I grill my top-notch doctors and scour medical journals for answers. I have only found a 2003 study conducted at the University of Texas M. D. Anderson Cancer Center explaining that thyroid cancer patients reported more memory loss than other cancer survivors and that further inquiry was needed. I have hung it above my desk.
I’ve tried to mitigate the emotional stress of my memory loss. I’m sad that I will quite likely never enroll in grad school or a doctoral program because my brain can’t hack it. But I’ve adapted by becoming a writer and consider the book I wrote the equivalent of a diploma. I’m frustrated when arguing a point that I can’t remember all the facts. But I’ve learned to preface these moments with a disclaimer about my memory, which takes some heat off of the cognitive spotlight. Still, I’m not over the loss of having my brain turn to Swiss cheese in my 30s.
I can’t remember conversations I’ve had with friends a few months ago. But curiously, I have impeccable recall of social situations in which I flush red with brain fog embarrassment. Chatting at a cocktail party a few years back, I wanted to say “rose garden” but couldn’t think of the word garden. It finally came out as “rose gorden.” “Rose Gordon?,” a guy replied in an over-the-top, fake Brooklyn accent. “I remembah Rose Gordon!” Everyone listening cracked up. I’m known for my gift of gab, but that night I kept my mouth shut, fearing the incoherent garbage that might fly out.
Cancer survivors are often known for becoming risk takers and living life on the edge after getting a diagnosis. For me, life on the edge is continuing to put my thoughts and ideas out into the world even though I might fumble miserably and reveal to friends, colleagues and strangers my shoddy synapses. My big leap is not quite as glamorous as running a marathon or climbing a mountain after treatment. But it is hard work just the same. Exposing my rickety mind is getting slightly easier with time. Hopefully I’ll have decades to practice.
Kairol Rosenthal is the author of “Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s” (Wiley, 2009). Dana Jennings, who writes each Tuesday about coping with cancer, is on vacation.
Thursday, November 12, 2009
Hi, All - Just a quick update on my Sutent clinical trial for thyroid cancer.
I flew down to St. Louis on November 11 and got the results of latest CT scan. The news was good - no new tumors and no growth in the existing cancer - Yea! The cancer is considered stable and I've been approved for 2 more cycles of the drug.
The side effects have been the usual: Hand-Foot Syndrome remains the most troublesome for me, along with anemia, fatigue, and elevated blood pressure. These have been worse the last couple cycles. I did get go off the drug a few days early this most recent cycle and really feel better for having done so. My hope is that the side effect won't be as noticeable this new drug cycle since I'll be starting it at a higher level (physically and mentally). Oddly enough, I've had less pain from the tumors these last couple cycles even though the side effects have been more pronounced. It seems like a fair trade-off.
I got to go off Sutent early so we could have an early Christmas present and enjoy a few days in Florida. We were on Sanibel Island off the west coast and had a great time. While it was rainy and cold in Lincoln, it was sunny and hot (temps in the mid-90s) all the time we were there. We sat on the beach and played in the Gulf and ate lots of seafood - it was wonderful!
I'll go down to St. Louis to get the results of my next scan on February 3, 2010. (Boy, it feels odd to write that.)
Thanks for all your continuing prayers and support. Thanks also, Rosemary and Pam, for lunch and for chauffeuring me around St. Louis last week!
John
Saturday, October 24, 2009
Ending Cycle 22 Early
Hi, Folks - I'm ending Cycle 22 of my Sutent Clinical Trial tonight rather than on 10/27 as scheduled. We have having guests over the weekend and we're going to Florida for a few days next week and I want to feel good for both!
Wednesday, September 30, 2009
Ended Cycle 21 last night
Has been kind of a hard cycle. Really tired, feet hurt a lot.
Oh, well, it's done and I've gotten through another cycle. Now I have 2 weeks off, which will be nice. I'll start up again on September 30.
My next CT scan is not scheduled yet, but will be sometime in early November.
I wish someone would do some research on Hand-Foot Syndrome. It seems like there are a lot of us out there who suffer from it and not much being done to help us.
I wonder sometimes about what the Sutent is doing to my liver and other vital parts. And I wonder what all the CT contrast is doing to my kidneys.
I guess as long as I have things like H-F Syndrome, livers, and kidneys, to worry about I shouldn't complain about having cancer! ;-)
Oh, well, it's done and I've gotten through another cycle. Now I have 2 weeks off, which will be nice. I'll start up again on September 30.
My next CT scan is not scheduled yet, but will be sometime in early November.
I wish someone would do some research on Hand-Foot Syndrome. It seems like there are a lot of us out there who suffer from it and not much being done to help us.
I wonder sometimes about what the Sutent is doing to my liver and other vital parts. And I wonder what all the CT contrast is doing to my kidneys.
I guess as long as I have things like H-F Syndrome, livers, and kidneys, to worry about I shouldn't complain about having cancer! ;-)
Subscribe to:
Posts (Atom)