Van55
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Posts posted by Van55
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I was told that it was unlikely that I would lose my hair as an effect of the carbo/alimta/avastin regimen. Though my male pattern baldness seems to have sped up a bit, I have not lost my hair in clumps as many chemo patients do. I hope you have the same good fortune, Sandi.
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My sweet husband, Mark, was diagnosed with Stage 4 NSCLC in March of 2010 and fought so very, very hard. He just passed away on Friday, October 15th at 10:00 am at the age of 52. I was his champion through his treatment and stood by his side during the last days of his life - so I know I was strong and wonderful - but I miss him sooooo much and am angry that this terrible cancer has such little support. If there are others in my position who can tell me how they are surviving without the love of their life, help me.
My sincere condolences. The loss of a loved one is staggeringly hurtful. No way to make it better. May you find solace from your grief.
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I'm also sorry to be late in welcoming you.
I was diagnosed with Adenocarcenoma of the lung back in March. On my first meeting with my oncologist he looked at me very seriously and advised that the mean survival time for people with my diagnosis is a year, meaning that 50% don't last a year. That was very distressing to my wife and me, of course.
I have since learned that the statistics are practically meaningless when it comes to individuals such as your mom and me. They should be ignored. Our survival time depends entirely on individual circumstances and our response to treatment.
I hope and pray for your mom, and I empathize with your distress over her condition. As her son and care-giver you must provide her with optimism, hope and support. Your grief over her diagnosis may be contagious. What she needs is hope and prayer, not grief and dispair.
It's funny that both my adult children wept when I told them of my diagnosis. It was I who comforted, consoled and reassured them. They didn't understand that "cancer" is a word, not a sentence. They've since become great sources of support for me.
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Sandi --
Welcome to the club no one in their right mind wants to join.
I don't know how I missed your posts earlier, but I did.
It sounds as if you may be participating in the same clinical trial that I am. The medical sponsor is US Oncology and they call the study "Point Break." This phase III study is to compare the efficacy of the standard of care treatment (Carboplatin + Taxol + Avastin) to the experimental treatment (Carboplatin + Alimta + Avastin). Whichever arm of the study you are randomly assigned to, you get four cycles of treatment on three week intervals followed by maintenance therapy -- in my case on Alimta and Avastin -- every three weeks indefinitely.
I began my trail on May 26 and had a great response. I have had no progression of disease since. For me, the side effects have been quite manageable, with the worst being extreme fatigue. My white and red counts are knocked way down in the two weeks following chemo, but have rebounded to the point that I haven't missed a scheduled infusion.
Best of luck to you and thanks for volunteering for the trial! My prayers are with you.
Do I correctly assume that the biopsied tissue were sent for testing for the EGFR, ALK or K-RAS mutations?
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Wonderful! How are you doing outside the medical arena?
Well, I am back to playing tennis on a weekly or biweekly basis, and enjoying it. Saturday I was on the winning side of all three sets of doubles, so I felt pretty good. That was before I went home and napped for 3 hours! The problem with my therapy is that I am so tired of feeling so damned tired.
I'm able to work some hours, which is fulfilling.
Psychologically, I am great. I feel like if have the cancer cornered, if not defeated. But I'll stay with the maintenance chemo in case.
Thanks for asking! Hope you are well.
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Another CT Scan shows NO PROGRESSION! Can't hate that!
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Judy, I read about your not so great news over at Grace and didn't have time to post a reply.
I really am sorry you have suffered a progression and I am putting up big time prayers that it reacts favorably to Tarceva and that you suffer zero side effects. Cyber hugs!
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Welcome to the forum and congratulations on what looks like a great, long-term survivorship.
You don't say when you were diagnosed or operated on, so we can only speculate from other facts how long you've had the credentials to join this supportive club.
I don't have practical advise for you to keep a positive outlook, other than to treat each day as an extraordinary gift. And keep giving back to others.
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Yay for Van! Hoping for scar tissue!
So you stay on maintenance and scan in 3, 4, or 6 months?
Maintenance dose every three weeks and CT every six weeks until disease progresses or treatment is too toxic. That is the clinical trial protocol.
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CT Scan results today show NO PROGRESSION OF DISEASE. Physician assistant says that the visible, measurable lesions could even be scar tissue rather than active tumors. Might be wishful thinking, but the maintenance Alimta/Avasitin is keeping whatever they are cornered for now.
I am proud to be a six months survivor since diagnosis.
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Welcome to this caring community.
We all hope and pray you are doing well with whatever therapy or therapies you have undergone since diagnosis.
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15 days after my final infusion with Alimta, Carbo and Avastin, my CBC showed very low hemoglobin, platelets and white (ANC) counts. A transfusion was recommended, which I declined as my pattern has been for the counts to rebound dramatically after day 15. Pattern held true, and I had my first maintenance infusion of Alimta and Avasitn the next week. 8 days later my hematocrit and hemoglobin levels were very low again. This time I agreed to a transfusion.
We were hoping that the Carbo was chiefly responsible for my low counts, but it now appears that Alimta may be as responsible or more so.
Does anyone have experience with transfusion(s) for anemia secondary to chemotherapy? I am feeling a bit better, but not as perky and energized as I had been led to believe I would.
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Wife is enrolled in the Bachelor of Interdisciplinary Studies program of the University of Va. Here in Virginia Beach. Daughter is a Freshman at College of William & Mary.
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I've updated my signature, but thought I would post as well.
After 4 cycles of chemotherapy last Friday's CT Scan showed 50% shrinkage overall since baseline and lymph nodes look normal. It's hard to complain about a response like that, even though it's well short of NED. I started maintenance on Alimta and Avastin today and hope for a long progression-free survival on that or perhaps even some further shrinkage. If the disease progresses, I will still potentially be able to get Pfizer's drug for my ALK arrangement.
As I told the doc today, I hope and pray that I will be around long enough to see my daughter and her mom get their bachelors' degrees in May of 2014.
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I was diagnosed in March. It hasn't been pleasant, but I am responding positively to chemo so far and, aside from the fatigue, I am withstanding the side effects quite well. My wife has been a Gibraltar of support.
Last week one of my wife's coworkers went to the doctor complaining of a cough. He was diagnosed with lung cancer the same day and told there was nothing that could be done for him. Their company arranged to transport him to New York for hospice care near his family. He is just days from death.
Somehow it doesn't seem fair. Like you, Jopette, I feel blessed.
Long may you survive!!!!
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Welcome. As with others I am sorry you needed to find this place.
From the point of view of the patient, I can't tell you how very important it is for you to supporty your mom in a positive, optimistic way. As the saying here goes, "cancer" is a word, not a sentence.
When I told my 20-something children of my diagnosis, they wept. That was not what I needed, I had enough sorrow for myself! When they walked with me through the processes I have experienced and learned the facts etc. they came to be my optimistic support group. Keep the faith!
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I love your attitude and am glad to know that you are definitely NED!
Stay that way. I hope to be able to join you there soon. Either way every day on this side of the grass is a blessing to be enjoyed and shared with others.
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On July 1, I had my first CT Scan after starting the chemotherapy infusions. After two infusions the report is "Substantial improvement overall. This is consistent with a positive response to therapy."
While an NED report would have been preferable, this is fantastic news for me and is tremendously encouraging.
I had my third of four scheduled infusions today and look forward with hope to continued improvement.
Thanks again to all for your support and good wishes.
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Hi and welcome to the forum. So sorry you needed to look for it.
As a LC patient, I can hardly express to you how vital the support of my family has been in facing treatment and an uncertain future. You have a huge job ahead of you supporting your husband, but keep the faith for him and with him. My prayers and good wishes are with you.
Van
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My he rest in eternal peace, and may you and his other loved ones and friends find solace from your grief.
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Judy, you've been so kind and supportive. My heart goes out to you and my prayers go up for you. Feel better, please.
Van
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I've been on this site almost three years and I keep hearing new treatments showing some success. ALK is new to me. I'll be interested in checking it out.
Judy in KW
Here's a recent article on the early results of clinical trials of the Pfizer experimental pill. http://www.medscape.com/viewarticle/723075
Apparently only 3-5% of us with adenocarcenoma of the lung carry the ALK genetic marker -- mostly non-smokers or people who quit smoking long ago. Still, the trend of anaylizing each specific patient's cancer cells and attempting to target treatment for the specific type of cancer cells found seems to show tremendous promise.
This Crizotinib pill may be for the ALK carrier what Tarceva seems to be for the EFGR carrier.
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Chemo round two was Wednesday, and I am still suffering no debilitating side effects from it (touch wood). I actually enjoyed a tennis "lesson" with my wife and a pro last evening. I spent an hour on the court with no shortness of breath. I was even able to run down a few balls. The exercise did me a world of good.
I will have a CT Scan on July 2 to measure how the chemo is affecting the lesions. Meanwhile, even if I'm not better, I might then be eligible for the Pfizer pill, Crizotinib, that is showing amazing results in trials on ALK lung cancer patients who did not get better with chemo.
I deeply appreciate all the good thoughts and wishes from my new "family" here. Thanks to each and every one of you.
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The pulmonary specialist to whom I was referred after a CTScan ordered by the PCP never said the words "pleural effusion" though that was exactly what the Scan showed. Here merely said, "This could be something not good."
Not good was right. I know how you feel. Welcome to the forum and good luck. Sounds like you have a resectable tumor, which would be good news.
8 Years Now
in LC SURVIVORS
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Great news, Don. Here's to eight more years!
On second thought, lend me a few of those years, will you? I'm at 10 months now and doing really well.