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5/10/2008
I am feeling better. No fever, chills, rigors or headache. My absolute neutrophil count (white cells) is back to normal range (2,300) and the doctors have decided to resume my weekly chemo dose.
My painful swallowing has also improved. I am taking 1-2 tablets of oxycodone, plus a cocktail of Mylanta/topical lidocaine anesthetic by mouth. On the hospital scale I have lost ten pounds this week, but I am not dehydrated.
I am in bed most of the day, but I feel more alert and energetic. I still have a cough but I am now able to sleep at night.
In the last few days I have developed a radiation skin burn on my upper chest along the midline and mostly on my back. It feels like sunburn but the skin is very dry and dusky in color (looks like a botched up job at a tanning saloon). Thank God it is not a total body tan!
5/2/2008
In the past 4 days I have been experiencing more fatigue and pain with swallowing. I have a new cough which keeps me awake at night (early radiation pneumonitis?). I also have persistent nausea, and a restless feeling (probably from the steroid dexamethasone) which appears to be subsiding. Eating is an effort but I am not losing any weight. I am trying to rest more during the day.
4/29/2008
Yesterday I had another visit with the medical oncologist. Follow up chest x-ray taken yesterday found no visible cancer nodules in my lung fields! Although this is not the most sensitive test and there is no information regarding the lymph nodes, it is very reassuring to know the chemotherapy is continuing to do its work.
I have been scheduled for surgery on June 5. The plan is first to perform a thoracoscopy (endoscope inspection of the left lung cavity through a small opening). If the examination shows no evidence of tumor involvement in the left upper lobe and/or pleural lining, then the surgeon will perform an open surgery to remove my left lower lobe.
This is the same operation I previously declined because I chose instead to complete 4 full cycles of chemo and the 5 weeks of radiation to the lymph nodes, before any surgical procedures.
According to my oncologist, the chances of a pathologic CR (no evidence of any cancer in the surgical specimen) is 3% or less; however, given my excellent response to chemo, it could be higher. The bottom line is, there is no reliable data on which to base my medical decisions, and the whole approach to my treatment for Stage IV cancer, including surgical resection, is not standard of care.
I have completed my fourth and last full cycle of chemotherapy as of yesterday. As usual, I am getting some hiccups (this typically lasts a few days and interferes with my sleep), and I have a persistent moderately-severe body rash. So far I have not experienced any nausea this time around.
I tire easily by mid day, but I am keeping up with my daily walking exercises. A friend took me fly-fishing (my favorite hobby) for a couple of hours last weekend, but it was very cold (19 degrees) and I caught nothing (not even a cold!).
I will continue to receive a weekly IV dose of a monoclonal antiboy (Cetuximinab), and I will be on this drug (or a similar drug in pill form, Tarceva) for at least five years. This is the drug that gives me a bad rash, so I am not looking forward to it at all!
I have now received three weeks of radiation therapy (out of five weeks, for a total of 25 total doses) and I began experiencing esophagitis symptoms (painful swallowing) two days ago. The good news is that I am still able to eat and drink and I have not lost any weight. And so far I have no skin burn.
The most feared complications of radiation are pneumonitis and spinal cord injury, so thank God that I do not have those! The side effects of radiation are expected to get worse during the last week of treatment and for another week thereafter.
This end of treatment period (mid May) will coincide with our national GI meeting in San Diego, CA, which I still plan to attend. My wife Alice plans to go with me while my dear brother and sister-in-law (Michael and Myrna) will come from Vancouver, BC to take care of the kids.
I will be careful to pace myself while at the meeting, but regrettably it probably will still too cold to lie down on the beach! You could pray that my stamina will hold up, to enable me to present the talks and research presentations that I am responsible for. One of my colleagues has agreed to do my last oral presentation so that I can come a day early.
4/19/2008
It has been two months since my cancer diagnosis. I have now received two weeks of radiation treatment (out of five weeks) and eight weeks of chemotherapy (3 out of 4 full cycles). My nausea has completely cleared and appears to have been due to chemo (when I get the full dose every 3 weeks); the skin rash problem persists and is my most troublesome symptom. I am now getting 3 drugs instead of the original four (Avastin was discontinued during radiation).
So far I have not experienced any noticeable side effects from radiation (daily treatments from Monday to Friday), although the remaining 3 weeks of treatment is expected to be worse. My body tires out easily by mid day, but I am in good spirits emotionally and spiritually.
Alice and the children are also doing very well. We gather as a family each night at bed time for a brief time of sharing and prayer. We continue to feel a strong sense of God’s presence in this journey, and rejoice in the experiential truth of Isaiah 40:31 (New Living Translation):
“But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.”
4/11/2008
Many of you have written or emailed to see how I am doing with my treatment. Alice and I are very grateful for your concern; we know that you will understand if we are unable to respond to all your inquiries.
Today is day 4 of my radiation treatment (given 5 days a week for the next five weeks). Major side effects of radiation therapy include bone marrow suppression (manifested by low blood count), pneumonitis (inflammation of the lung tissue), and esophagitis (inflammation of the food pipe, manifested by painful or difficulty swallowing, heart burn, and poor oral intake).
Most side effects of radiation therapy are reversible upon completion of treatment. However, pneumonitis can cause lung fibrosis (scarring) which may compromise lung function and proper exchange of oxygen. Careful pre-treatment planning of the paths of radiation beams are designed to minimize this potentially serious complication. Rarely esophagitis may cause scarring and narrowing of the food pipe, requiring dilation.
Overall the side effects of radiation therapy are cumulative, specially when combined with chemotherapy. During my first six weeks of chemotherapy prior to starting radiation therapy, I was able to continue working using a modified schedule. However I may not be able to keep this up in the coming weeks, depending on how well my body tolerates the combined effects of chemo-radiation therapy.
So far during this first week of combination treatment, my main symptoms are moderate nausea, loss of appetite, easy fatigability, severe skin rash, dry and cracked skin, and severe itching of my scalp. I was able to perform two days of endoscopic procedures this week but had some difficulty getting through the day.
4/5/2008
April 5, 2008
The Tumor Board met on March 31 and reviewed my PET/CT scans. Because of my excellent response to chemo the Board suggested that I consider the option of inserting a scope into the left lung to determine the extent of tumor involvement of the lining of the lung and/or surrounding lobes. If the cancer was found to be limited to a single lobe, then open surgery to remove that lobe could be performed at the same time. This would mean postponing radiation therapy and additional chemotherapy for at least 3-4 weeks while my body recovers from the operation.
This unconventional approach could significantly improve the chances of a good response to radiation therapy (since radiation therapy to the satellite nodules in the lung is impractical), and possible long-term cure. On the other hand, surgical complications could occur and this may delay the resumption of chemo and/or initiation of radiation therapy.
In the final analysis there is no solid clinical data to fall back on and this was a very difficult decision for Alice and I. After prayerful consideration of the options, we decided to decline surgery at this time.
The new plan is to continue chemo and simultaneously begin radiation therapy to the lymph nodes next week. It is anticipated that radiation side effects will significantly affect my ability to work, particularly towards the latter half of the 5-week course.
Surgery and/or stereostatic radiotherapy to the primary tumor in the left lung, and possibly to the single spot in the spleen, are still considerations for the future.
Please pray that the combination of radiation and chemo will be effective, that the radiation side effects will be minimized, and for God to give us and the oncology team His wisdom as we assess treatment response and additional treatment options at a later date.
3/29/2008
Yesterday morning I had a follow up PET/CT scan. The results showed a dramatic tumor response after only two full cycles of chemotherapy – all the “hot spots” (representing tumor activity) previously noted on PET scan in my left lung, lymph nodes, and the spleen are no longer "hot" (suggesting effective tumor destruction).
The fact that the “hot spot” in the spleen also responded to chemo means it was probably a tumor metastasis (suggesting that the cancer is Stage IV) but the good response is great news! In addition, the primary tumor in the left lung is reduced in size (from 3.3cm to about 1.7cm), and all the satellite nodules are either smaller or are no longer detectable. Similarly, the lymph nodes are much smaller and are no longer “hot”.
The Tumor Board will meet this coming Monday to review the results and discuss the next step.
Thank you so much for your prayers!
3/19/2008
My worst symptoms are from side effects of steroid pills (dexamethasone) taken to counteract the side effects of chemo. The steroids made me really edgy and tense, and I found it difficult to sleep, sit still, or to focus for several days. I probably will decide to skip the steroids, or at least reduce the dose next time.
I am so very grateful for the many expressions of love and concern (cards, emails, phone calls, visits, prayers, meals, music CDs and other “cheer-you-up” gifts, rides to chemo, time with the kids, and many other acts of kindness) from my family, staff and colleagues, my church family, and friends from around the world!
Thank You!
3/14/2008
I received my second full cycle of chemo today. My chemo rash has improved. I am experiencing the same chemo side effects as before (nausea, fatigue, rash, dry skin, etc) but the symptoms are less severe. I have a little more sympathy for you ladies who experienced bad morning sickness during the first trimester of pregnancy!
So far I still have a full set of hair …albeit a little grayer (and hopefully a little more distinguished looking)!
3/13/2008
I saw my medical oncologist today for my 3-week follow up. Chest x-ray obtained this morning showed substantial reduction in the size of the tumors in the left lung. This is all good news after only one full cycle of chemotherapy
The encouraging response indicates we are going in the right direction with the chemo.
I also had my first consultation with the radiation oncologist today. Radiation therapy is a future option only if the satellite nodules in the left lung respond to chemo. But it is too early to make a determination at the present time.
Several radiation treatment approaches (Cyberknife stereostatic radiosurgery and IMRT 3-D radiotherapy, proton beam therapy, etc) may be considered about mid way through the chemo cycles
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