I know it has been over a week since I last posted to this blog, but there hasn't been any real new developments and I have had a lot of out-of-town company visiting that has been keeping me busy. I am completely out of the radiation fog now so no longer spacey and feeling like my old self. My energy is pretty good, although I am pretty tired by the end of the day. I am sleeping through the night almost every night now. The radiation burn at the base of my neck is almost gone - just a thin red line remains and it doesn't bother me at all. The rash from the Tarceva is minimal and not causing me any real problems. And finally, my right hand is getting better all the time and I can now write a paragraph or more at a time with my right hand.
I will see Dr. Bonomi this Tuesday but don't expect to get any news. I think he will just be checking for how I am reacting to the Tarceva. We will no more about the progress of the cancer treatments after Thanksgiving when we do the CAT scan and brain MRI. On Wednesday, I will see my neurologist, Dr. Angelopoulos for a check-in. I probably won't post again until after these two appointments unless there are new developments in the meantime.
Thanks for checking on my progress here and for all of the concern and support you all continue to show me. It makes all the difference!
Thursday, October 28, 2010
Monday, October 18, 2010
Positive Signs
It's been almost two weeks on Tarceva and so far, no major problems. I may be seeing signs of a slight rash near my neckline by the bottom of my ears, but it isn't causing me any discomfort and doesn't look too bad. The radiation burn on my neck is much better - only about an inch of redness and much less angry than before. I've been off the steroids since last Thursday and have slept through the night ever since. I am feeling more and more like my old self and less spacey with each passing day. And finally, my right hand seems to be improving. I can sign my name when needed now and yesteday, I was able to write continuously with my right hand for about four or five sentences before the shakes got too bad.
I think that given my re-emergence toward normalcy, it is probably time to stop taking advantage of the generosity of my friends and neighbors and start cooking for ourselves again after this week. To everyone who has supplied a meal to us, we are so very, very grateful and I'll have you all know I actually gained weight over the past two months because of it! The food has been delicious and we have been spoiled more than we deserve. Thank you all so very much. If things take a turn at some other juncture, I promise I'll let you know if we need to start up the gravy train again!
I think that given my re-emergence toward normalcy, it is probably time to stop taking advantage of the generosity of my friends and neighbors and start cooking for ourselves again after this week. To everyone who has supplied a meal to us, we are so very, very grateful and I'll have you all know I actually gained weight over the past two months because of it! The food has been delicious and we have been spoiled more than we deserve. Thank you all so very much. If things take a turn at some other juncture, I promise I'll let you know if we need to start up the gravy train again!
Wednesday, October 13, 2010
Keep on keeping on...
This post is in memory of Bob Harmon who died yesterday. Bob was our friend Matt's father who was diagnosed with lung cancer many years ago and has battled multiple rounds of the cancer's recurrence throughout the years to live well beyond his initial prognosis, all the while surviving his wife's own battle with cancer after she finally succumbed to it after defying the odds as well. Although I didn't know Bob personally, he was kind enough to reach out to me when Matt told him I was diagnosed with lung cancer and share his and his wife's experiences as a source of comfort, knowledge and inspiration to fight. I will forever be grateful. Rest in peace, Bob and my heartfelt condolences to Matt, Becky and the rest of the Harmon family.
I think the fog of the radiation is starting to gradually clear. Although I still feel spacey a lot of the time, I've been able to concentrate on things long enough to get some work and volunteer project tasks done each day. Yesterday was especially productive so I am encouraged that I am getting closer to normalizing. It has been two weeks since I completed the radiation and I recall the doctors saying the side effects last about two weeks. I am still pretty fatigued by the end of each night right now though. The radiation burn on my neck is healing, although I still have about a 2 inch scab there. The burn on the forehead is fully healed. I have just 2 more days left to finish off the steroids and in spite of the fact that I am up at 4 a.m. right now, overall I have been sleeping better. My right hand is still very shaky but I can write about a sentence at a time with it so there is improvement there as well. I've been on Tarceva for one week with no ill effects so far and hoping that lasts as long as possible. So all in all, things are going well.
I think the fog of the radiation is starting to gradually clear. Although I still feel spacey a lot of the time, I've been able to concentrate on things long enough to get some work and volunteer project tasks done each day. Yesterday was especially productive so I am encouraged that I am getting closer to normalizing. It has been two weeks since I completed the radiation and I recall the doctors saying the side effects last about two weeks. I am still pretty fatigued by the end of each night right now though. The radiation burn on my neck is healing, although I still have about a 2 inch scab there. The burn on the forehead is fully healed. I have just 2 more days left to finish off the steroids and in spite of the fact that I am up at 4 a.m. right now, overall I have been sleeping better. My right hand is still very shaky but I can write about a sentence at a time with it so there is improvement there as well. I've been on Tarceva for one week with no ill effects so far and hoping that lasts as long as possible. So all in all, things are going well.
Wednesday, October 6, 2010
Yesterday's Doctor's Visit - What's Next and What to Expect
I have been having some challenges with Google lately where I haven't been able to get into my blog to enter new posts, so this is part of the reason for the delay in getting this posting out today.
The Short Version
Yesterday's appointment with Dr. Bonomi was very positive. Basically, the Tarceva has a 70-80% chance of successfully containing and/or shrinking and/or eliminating the cancer cells in both my lung and brain and with relatively minor side effects of a rash on my face/scalp/chest/neck; diarrhea; dry skin and some mild fatigue. When my hair does grow back, it will likely be wavy or curly and thinner by the temples. It will take a long time to see progress but slow and steady wins the race. When I see Dr. Bonomi again on November 2, we will do some blood work to make sure things are holding steady, but won't really have any tests that show us what progress we are making. Those will occur in the appointment I will have with him after Thanksgiving, where we will do an MRI and CAT scan to see the number and size of tumors and lesions at that point. So it's really a waiting game until that point. In the meantime, we just find the best way to treat and minimize the side effects. The other thing that came out of the appointment is we've decided to wean me off the steroids since they don't seem to be doing much at this point anyway. My hand is still very shaky. So over the course of the next 9 days I will ramp down the dosage and then be done with the steroids. Yeah!
The Longer Story
My visit started with getting some baseline blood work to look for any tumor markers in the blood and make sure my liver and liver enzymes were at healthy levels. Some tumors shed proteins which show up in the blood and this can be used to track the tumors' activity over time, with a reduced rate of these proteins indicating the tumors are shrinking. The results of my blood work did not show any elevated proteins from the tumor activity, so this probably won't be a good source of information for my progress going forward. The reason for the liver testing is that Tarceva is metabolized through the liver and they monitor the liver function to make sure there are no problems. This will be a regular part of my blood work tests for each visit.
I also agreed to submit a sample of blood for a study the hospital is doing to identify a set of tumor markers released in the blood to help determine which treatment strategy is best for individuals. The markers may also be used to diagnose lung cancer at an earlier stage. Although this won't affect my treatment at all, anything I can do to advance the cause of diagnosing, treating and ultimately eradicating this disease is a worthwhile investment in my book.
Most of my visit at Rush was with Dr. Bonomi's nurse, Irene, who is very patient, thorough and detailed with covering all the important information I needed to know about my treatment. We first talked about the side effects and when they would likely occur. I will probably start to see the rash in about a week. It should peak in severity in 4-6 weeks and then subside in about two months. I will work with my dermatologist to try to mediate the effects of the rash, but Irene already offered some suggestions for some topical antibiotics. Ideally, I would also take an oral antibiotic but I have allergies to the most common ones - penicillin and sulfa antibiotics, so this will pose a challenge.
The dry skin will be a constant. There are likely to be some changes in my nails - making them weaker. And the hair, when it grows back, will likely be curly or wavy as long as I am on the Tarceva. There is also a possibility of some "peach fuzz" light facial hair. The diarrhea has more than a 50% likelihood of occurence, but should not be severe and nothing that Immodium can't treat. Ironically, a healthier diet makes it worse! The fatigue should be minimal - definitely less than I am having now as a result of the radiation treatment.
Unlike chemo, Tarceva will not lower my immune system so there is not an increased chance of infections. They felt it was still a very good idea to get a flu shot, so I did this while I was at the doctor's office yesterday. I do need to be careful to wear sunscreen as I will be more sensitive to the sun.
I asked about how the Tarceva works on the cancer cells. Essentially, it stops the growth of the cancer cells. Over time, as the cells can no longer divide to grow, they die. So although Tarceva does not work as aggressively at killing cancer cells as chemotherapy does (which just kills everything - good, bad and ugly), it does ultimately shrink and kill the cancer cells. Because I have the EGFR mutation, I have a 70-80% likelihood of success with the Tarceva therapy.
In terms of our process going forward, I will see Dr. Bonomi once a month. On the first month, like on my November 2 visit, it will be just a check in on how I am doing and getting some blood work. Every two months, starting the first visit I have after Thanksgiving, we will do a CAT scan to see how the cancer mass in my lung is doing and make sure it hasn't spread elsewhere. We will also do an MRI to check on the brain lesions at that time, but we may not do an MRI every time we do a CAT scan. As long as they do not see tumor growth, I will likely stay on the Tarceva.
After Dr. Bonomi, Irene and I discussed the fact that my right hand is still very shaky and the steroids don't seem to be helping this, we agreed I should start weaning off of them, cutting the dosage by 2 mg every 3 days until I stop completely after 9 days. Hopefully, after the inflamation from the radiation has subsided, my right hand will become more steady. Again, we have to just wait and see.
The Short Version
Yesterday's appointment with Dr. Bonomi was very positive. Basically, the Tarceva has a 70-80% chance of successfully containing and/or shrinking and/or eliminating the cancer cells in both my lung and brain and with relatively minor side effects of a rash on my face/scalp/chest/neck; diarrhea; dry skin and some mild fatigue. When my hair does grow back, it will likely be wavy or curly and thinner by the temples. It will take a long time to see progress but slow and steady wins the race. When I see Dr. Bonomi again on November 2, we will do some blood work to make sure things are holding steady, but won't really have any tests that show us what progress we are making. Those will occur in the appointment I will have with him after Thanksgiving, where we will do an MRI and CAT scan to see the number and size of tumors and lesions at that point. So it's really a waiting game until that point. In the meantime, we just find the best way to treat and minimize the side effects. The other thing that came out of the appointment is we've decided to wean me off the steroids since they don't seem to be doing much at this point anyway. My hand is still very shaky. So over the course of the next 9 days I will ramp down the dosage and then be done with the steroids. Yeah!
The Longer Story
My visit started with getting some baseline blood work to look for any tumor markers in the blood and make sure my liver and liver enzymes were at healthy levels. Some tumors shed proteins which show up in the blood and this can be used to track the tumors' activity over time, with a reduced rate of these proteins indicating the tumors are shrinking. The results of my blood work did not show any elevated proteins from the tumor activity, so this probably won't be a good source of information for my progress going forward. The reason for the liver testing is that Tarceva is metabolized through the liver and they monitor the liver function to make sure there are no problems. This will be a regular part of my blood work tests for each visit.
I also agreed to submit a sample of blood for a study the hospital is doing to identify a set of tumor markers released in the blood to help determine which treatment strategy is best for individuals. The markers may also be used to diagnose lung cancer at an earlier stage. Although this won't affect my treatment at all, anything I can do to advance the cause of diagnosing, treating and ultimately eradicating this disease is a worthwhile investment in my book.
Most of my visit at Rush was with Dr. Bonomi's nurse, Irene, who is very patient, thorough and detailed with covering all the important information I needed to know about my treatment. We first talked about the side effects and when they would likely occur. I will probably start to see the rash in about a week. It should peak in severity in 4-6 weeks and then subside in about two months. I will work with my dermatologist to try to mediate the effects of the rash, but Irene already offered some suggestions for some topical antibiotics. Ideally, I would also take an oral antibiotic but I have allergies to the most common ones - penicillin and sulfa antibiotics, so this will pose a challenge.
The dry skin will be a constant. There are likely to be some changes in my nails - making them weaker. And the hair, when it grows back, will likely be curly or wavy as long as I am on the Tarceva. There is also a possibility of some "peach fuzz" light facial hair. The diarrhea has more than a 50% likelihood of occurence, but should not be severe and nothing that Immodium can't treat. Ironically, a healthier diet makes it worse! The fatigue should be minimal - definitely less than I am having now as a result of the radiation treatment.
Unlike chemo, Tarceva will not lower my immune system so there is not an increased chance of infections. They felt it was still a very good idea to get a flu shot, so I did this while I was at the doctor's office yesterday. I do need to be careful to wear sunscreen as I will be more sensitive to the sun.
I asked about how the Tarceva works on the cancer cells. Essentially, it stops the growth of the cancer cells. Over time, as the cells can no longer divide to grow, they die. So although Tarceva does not work as aggressively at killing cancer cells as chemotherapy does (which just kills everything - good, bad and ugly), it does ultimately shrink and kill the cancer cells. Because I have the EGFR mutation, I have a 70-80% likelihood of success with the Tarceva therapy.
In terms of our process going forward, I will see Dr. Bonomi once a month. On the first month, like on my November 2 visit, it will be just a check in on how I am doing and getting some blood work. Every two months, starting the first visit I have after Thanksgiving, we will do a CAT scan to see how the cancer mass in my lung is doing and make sure it hasn't spread elsewhere. We will also do an MRI to check on the brain lesions at that time, but we may not do an MRI every time we do a CAT scan. As long as they do not see tumor growth, I will likely stay on the Tarceva.
After Dr. Bonomi, Irene and I discussed the fact that my right hand is still very shaky and the steroids don't seem to be helping this, we agreed I should start weaning off of them, cutting the dosage by 2 mg every 3 days until I stop completely after 9 days. Hopefully, after the inflamation from the radiation has subsided, my right hand will become more steady. Again, we have to just wait and see.
Sunday, October 3, 2010
A Poem from my Brother-in-Law, Jim Tilley
My sister Deborah and her husband Jim were in town this weekend visiting. Jim is an accomplished and award-winning poet and as we were talking about how I am teaching myself to write left-handed, he found inspiration for a poem that captures my cancer battle. I think this is just lovely and thought it was worth sharing with those of you following this blog. Enjoy.
Learning to Write
by Jim Tilley
—for DonnaLee
Her left hand grasps the fat, soft-leaded pencil
and makes broad strokes between the wide-ruled lines
that the tops and bottoms of characters
must barely touch, smooth cursive strokes,
straight and curved, double-size for capitals,
letter by letter through the alphabet,
a lifetime of experience telling her she has choices—
the modern-style, lower-case r she learned
in grade school or the old-fashioned one
with a serif on the leading edge and a gentle cusp
on the way down, the style to which she switched
in high school after reading a packet
of her grandmother’s letters. And the letter p
she could leave open at its base the way the Sisters
taught her, but now feels a need to close,
though doing so makes getting to the next letter
more difficult, having to retrace her path
before going on, taking steps backward more often
than she’d like. She’s as slow and awkward now
as she was then with everyone grading her progress.
Her script isn’t beautiful yet, not like the calligraphy
her right hand could form before the tremors.
But she discovered how beautiful she is
when her husband shaved her head after whole-brain
radiation took away her shoulder-length red hair.
She can see the smooth curves of her ears
and the diamond studs he gave her last birthday.
And now there’s a new slant to all her thank-you notes.
Friday, October 1, 2010
The Afterglow...
Well, it is nice to have the radiation treatments over with and no longer have to run to the hospital every day. However, I think they must have given me a supercharge on the last day because the past couple days have left me feeling a bit more loopy than usual where I have to really concentrate my focus more than I had before. It hasn't stopped me from doing anything, but it takes a bit more effort to stay in tune with my environment. They said the effects of the radiation were cumulative and so I could be feeling a little off for another couple of weeks. I'm hoping it won't last that long.
I also just developed a bit of a burn along my forehead and the base of my skull from the radiation. They said this was a possibility. It is very similar to a sunburn, red in color and sensitive to the touch. My wig specialist, Lori, recommended neosporin with pain reliever and that seems to alleviate any discomfort pretty well.
My right hand is still really shaky so I'm still at the higher dosage of steroids. The doctors are hoping once the inflammation from the radiation subsides so will that shaking. (I'm crossing my shaky fingers that is the case!) In the meantime, the steroids tend to make me wake up for at least an hour or so in the middle of the night. I'll be glad when I can cut back on them.
I was still at the hospital anyway yesterday to get about 10 small vials of blood drawn. Since I am willing to attack this cancer on a variety of fronts, a naturopathic doctor named Dr. Rubin from Arizona is working with me and wanted to get about eight different tests done on my blood to identify why my body's immune system didn't fight off this cancer. A lot of these tests are not well known so my primary doctor, who had to order the tests, had to do quite a bit of research before she could even get the tests ordered. It will probably take a week to ten days to get the results back since a lot of analysis is being done in places like Mayo Clinic. Dr. Rubin also has me keeping a food journal for about 5 days and once we have all this information collected, will have some ideas to share about what I can do on the nutrition front to beat the cancer.
I also just developed a bit of a burn along my forehead and the base of my skull from the radiation. They said this was a possibility. It is very similar to a sunburn, red in color and sensitive to the touch. My wig specialist, Lori, recommended neosporin with pain reliever and that seems to alleviate any discomfort pretty well.
My right hand is still really shaky so I'm still at the higher dosage of steroids. The doctors are hoping once the inflammation from the radiation subsides so will that shaking. (I'm crossing my shaky fingers that is the case!) In the meantime, the steroids tend to make me wake up for at least an hour or so in the middle of the night. I'll be glad when I can cut back on them.
I was still at the hospital anyway yesterday to get about 10 small vials of blood drawn. Since I am willing to attack this cancer on a variety of fronts, a naturopathic doctor named Dr. Rubin from Arizona is working with me and wanted to get about eight different tests done on my blood to identify why my body's immune system didn't fight off this cancer. A lot of these tests are not well known so my primary doctor, who had to order the tests, had to do quite a bit of research before she could even get the tests ordered. It will probably take a week to ten days to get the results back since a lot of analysis is being done in places like Mayo Clinic. Dr. Rubin also has me keeping a food journal for about 5 days and once we have all this information collected, will have some ideas to share about what I can do on the nutrition front to beat the cancer.
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