Blog about my life and experiences after learning that I have stage IV lung cancer in April, 2007. Includes travel experiences, treatments and status info, as well as other misc comments.
Tuesday, June 14, 2011
gallbladder
Met with a surgeon today to discuss my gallbladder attack. He gave me lots of info re: attacks, causes and treatment. We discussed and scheduled surgery to remove my gallbladder in early July. In the meantime, I need to be careful what I eat to avoid triggering another attack. After the attack on Saturday, no way I want to go through that again. If it does happen again, I will now be able to identify it and I have some strong meds to take to ease the pain.
Sunday, June 12, 2011
gallbladder attack
Experienced a severe gallbladder attack late yesterday. Have never had extended, severe pain like that. Really scary. Went to the emergency room. Several tests and lots of pain med. Apparently, I have gallstones. Feeling better today. Going in to see my doc tomorrow. I imagine the docs will want to remove my gallbladder.
Thursday, June 9, 2011
June 9, 2011 retina follow up
More retina photos and saw Dr Phan. Retinal hemorrhage in right eye is the same as last visit. Continue with Nevanac drops and wait. Apparently, takes time. While there are treatment options, this type of thing typically clears up on its own over time. Next visit in August.
Wednesday, June 8, 2011
June 8, 2011 status
Had a chest and abdomen CT this morning and saw Dr Einhorn afterward. Everything looks good. He indicated that there has been a little reduction in the lung cancer mass and the fluid. Abdomen is clear. Left lung continues to be clear. No new significant side effects. Will continue with the 250 mg 2X per day dose of crizotinib.
Lots of news about crizotinib this week because the American Society of Clinical Oncology had a national conference this weekend in Chicago. Two of the links are copied below.
http://www.huffingtonpost.com/2010/06/05/crizotinib-lung-cancer-dr_n_601729.html
http://www.washingtonpost.com/business/experimental-pfizer-cancer-pill-may-sharply-boost-survival-of-lung-cancer-patients/2011/06/05/AGtTraJH_story.html
Lots of news about crizotinib this week because the American Society of Clinical Oncology had a national conference this weekend in Chicago. Two of the links are copied below.
http://www.huffingtonpost.com/2010/06/05/crizotinib-lung-cancer-dr_n_601729.html
http://www.washingtonpost.com/business/experimental-pfizer-cancer-pill-may-sharply-boost-survival-of-lung-cancer-patients/2011/06/05/AGtTraJH_story.html
Sunday, June 5, 2011
New crizotinib news
There are quite a few recent news articles about crizotinib. Apparently, a national conference of oncologists has included presentations about the very positive results from this study drug. I have certainly experienced the kind of results that are being discussed. Below are links to a couple of the articles.
http://www.huffingtonpost.com/2010/06/05/crizotinib-lung-cancer-dr_n_601729.html
http://www.washingtonpost.com/business/experimental-pfizer-cancer-pill-may-sharply-boost-survival-of-lung-cancer-patients/2011/06/05/AGtTraJH_story.html
http://www.huffingtonpost.com/2010/06/05/crizotinib-lung-cancer-dr_n_601729.html
http://www.washingtonpost.com/business/experimental-pfizer-cancer-pill-may-sharply-boost-survival-of-lung-cancer-patients/2011/06/05/AGtTraJH_story.html
Wednesday, May 18, 2011
May 18
Saw Dr E today. No CT this visit. Everything looks fine. No new side effects.
Started eye drops in right eye today. I expect it will be at least a few days before I see any change.
Started eye drops in right eye today. I expect it will be at least a few days before I see any change.
Monday, May 16, 2011
Eyes
Turns out the retinal hemorrhages are late effects from the full head brain radiation 2 years ago. Dr Phan said this is common. Lots of funky pictures of the retina + with a dye. Apparently, these normally clear up on their own. But she will watch them frequently. She will call me after she studies the pictures closely. In any case, we're headed to NC to see the kids.
Talked to Dr Phan while in NC. She is sending eye drops to help the right eye.
Talked to Dr Phan while in NC. She is sending eye drops to help the right eye.
Thursday, May 5, 2011
Right eye issue
For a couple weeks have had distorted vision in my right eye. Eye doc told me today that I have a small hemorrhage on the retina. See a retina specialist next week.
Wednesday, May 4, 2011
4 year survivor
Hurray!! It has now been 4 years since my first chemo treatment for lung cancer on May 4, 2007. I remember that we were nervous and apprehensive when I was diagnosed on April 26, 2007. But, we faced it and battled as we always have. I've had obvious ups and downs. Some pretty significant side effects from 7 different kinds of chemo and high levels of radiation on my brain.
Loss of energy, significant fatigue. I've been pitiful at times. Complete loss of appetite - it really sucked to have no appetite. Food had no taste. At one time, I lost 75 lbs in about a year. I was already balding; but, with chemo and radiation, I lost what little hair I still had. It is now just a little bit of baby fuzz. Several multi-day hospital stays - including one when they did a procedure to remove fluid build-up in my lungs - they removed a total of 1 1/2 gallons. Experienced a pulmonary embolism (blood clot in the lung) in the middle of all this. Radiation caused cataracts and needed surgery in both eyes. Tethered to oxygen for months. Giving myself shots to thin my blood.
Per the American Cancer Society, 75% of those diagnosed with Stage IV Lung Cancer die within 2 years. But, I am still here! I have had a couple periods of remission - one 18 months and one 9 months. Despite the challenges of the past 4 years, I look forward to being around for quite a bit more time.
We have continued find ways to cruise to many parts of the world. We have been to so many places in the last 4 years - Denmark, Iceland, Norway, Greenland, the Caribbean, Alaska, Hawaii, Spain, Italy, Greece, Turkey, Galapogas, Ecuador, Columbia, Costa Rica, Panama, Belize, Morocco, Monaco, France, Portugal, Croatia, Butchart Gardens in British Columbia - Canada, and so many other places. Sometimes I had to drag around a heavy oxygen machine; but, we managed anyway.
Currently, I am on a study/test drug that has been a miracle. In about 6 months, my lung tumor mass has reduced almost 70% and I have not experienced any significant negative side effects from the crizotinib.
As I reflect on the past 4 years, I have been a very lucky person.
Loss of energy, significant fatigue. I've been pitiful at times. Complete loss of appetite - it really sucked to have no appetite. Food had no taste. At one time, I lost 75 lbs in about a year. I was already balding; but, with chemo and radiation, I lost what little hair I still had. It is now just a little bit of baby fuzz. Several multi-day hospital stays - including one when they did a procedure to remove fluid build-up in my lungs - they removed a total of 1 1/2 gallons. Experienced a pulmonary embolism (blood clot in the lung) in the middle of all this. Radiation caused cataracts and needed surgery in both eyes. Tethered to oxygen for months. Giving myself shots to thin my blood.
Per the American Cancer Society, 75% of those diagnosed with Stage IV Lung Cancer die within 2 years. But, I am still here! I have had a couple periods of remission - one 18 months and one 9 months. Despite the challenges of the past 4 years, I look forward to being around for quite a bit more time.
We have continued find ways to cruise to many parts of the world. We have been to so many places in the last 4 years - Denmark, Iceland, Norway, Greenland, the Caribbean, Alaska, Hawaii, Spain, Italy, Greece, Turkey, Galapogas, Ecuador, Columbia, Costa Rica, Panama, Belize, Morocco, Monaco, France, Portugal, Croatia, Butchart Gardens in British Columbia - Canada, and so many other places. Sometimes I had to drag around a heavy oxygen machine; but, we managed anyway.
Currently, I am on a study/test drug that has been a miracle. In about 6 months, my lung tumor mass has reduced almost 70% and I have not experienced any significant negative side effects from the crizotinib.
As I reflect on the past 4 years, I have been a very lucky person.
Saturday, April 30, 2011
Milestones in my cancer
This week, April 26 is the fourth anniversary of my actual lung cancer diagnoses. Next week, May 4, is the aniversary of my first chemotherapy treatment. I feel very lucky to still be around to fight the battle with cancer.
Thursday, April 28, 2011
CT & tests April 27
CT and bloodwork yesterday. Saw Dr Einhorn. He indicated that my lung cancer is stable. I received the following from the Research RN today. "Followup that radiology agreed with Dr E – there has been further shrinkage of abdominal fluid/omental disease. Labs were stable…." and "The lung ct was spot on stable…the omentum was ½ cm smaller…the fluid was eyeballed smaller (difficult to measure)" Apparently, the omentum is the area in my abdomen where they have previously spotted an unidentified mass that has reduced during the crizotinib treatment. So...test appear to be good news.
Thursday, April 7, 2011
April 6 - on since Nov 11
5 three week cycles so far, Even cycles I get scans, bloodtests,exam. Odd cycles I get bloodtests and exam. Discussions about breathing, coughing, pain, appetite, visual trails in my sight, and any oddities I have been feeling. This week nothing really new. Dr E is happy that I have managed to keep some of the weight that I gained on the cruise. My appetite has been good. He is also happy that my liver function has improved. It had been getting slightly worse during recent weeks. With improvement this week, no need to consider adjusting the criotinib dosage.
My physical condition puts some limits on what we can handle. But we are making the most of what we can. During upcoming weeks/months, we will visit our son and his wife to see their new home, we will make a trip to Joliet to see family, we'll try to get over to see Julie, we will attend a family wedding on Dominica and we will visit NY and do a cruise of New England and Canada.
Our challenge is to keep ourselves well enough to handle all the travel. Good Luck to us.
My physical condition puts some limits on what we can handle. But we are making the most of what we can. During upcoming weeks/months, we will visit our son and his wife to see their new home, we will make a trip to Joliet to see family, we'll try to get over to see Julie, we will attend a family wedding on Dominica and we will visit NY and do a cruise of New England and Canada.
Our challenge is to keep ourselves well enough to handle all the travel. Good Luck to us.
Thursday, March 17, 2011
March 16 CT
Got my regular CT yesterday - along with bloodtests and saw Dr E. He indicated that lung tumor reduction has continued - I hope to get details next week from Debb. No new side effects. Apparently, the crizotinib is effecting my liver slightly; but, Dr E said he will just watch it for now. If necessary, in the future, he will adjust the crizotinib dosage. He examined my right side since I have been having a dull pain; but, it is probably still from the pleurodisis a while back. Nothing on the CT and Dr E's exam doesn't show anything. He commented that "the cruise ship food must have agreed with me" and indicated that I had gained 7 lbs. Clearly, the crizotinib has not reduced my appetite. I'm betting that will go away now that I am back eating my normal diet at home.
Friday, February 25, 2011
ENT Feb 25
Saw ENT (ear, nose, throat doc) today. He checked ear tubes. Rt was plugged & he removed it. I had been having fluid in the rt ear. He recommended I use "ear planes" (special plugs) when I fly tomorrow to help level out pressure. Hope it works. If no issues, I go back in 6 months.
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