Cheryncp123
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Posts posted by Cheryncp123
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Marc, I am very excited to hear that you are a fellow ALKie. I have been on Xalkori (crizotinib) now for 15 months. I am stable with no signs of progression. Everyone's body reacts differently, but I can tell you the side effects that I have experienced have been minimal. In the beginning I had some visual disturbances such as flashes of light when going from a darkened room into a lighted room. If I take my medication without eating something first I will get nauseated and vomit. If I eat before taking my med I have no problem. I have had some severe bouts of diarrhea that have resolved with a probiotic. If I did not have to take my pills I seriously would not know that I have cancer. I do all the things I have ever done. I am praying that your results will be as good as mine have. God be with you.
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I think we all deal with our anxiety in different ways. I don't stress easily so I really don't give it much thought. I have a strong faith and that helps. Staying busy and focusing on other things can be helpful. Stress is not good if you don't already take an anti anxiety medication you may want to discuss that with your doctor.
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Scooter49, I was diagnosed nearly 15 months ago with stage 4 metastatic adenocarcinoma that tested positive for the ALK mutation. I was immediately started on an oral targeted therapy drug Xalkori (crizotinib). I had some minor side effects in the beginning such as visual disturbances and diarrhea but those have now resolved and other than taking 2 pills a day I would not even know I have cancer. Although I can't say I am "cured" I am stable and there has been no progression. I have gotten my energy back after several months of feeling very run down, which is to be expected from what we have gone through, I am still working, traveling enjoying my family and friends and doing all the things I did before my diagnosis. I am praying for great results for your husband on his therapy.
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Marc, it took about 2 weeks to get my genetic test back. It was closer to a month from the time of diagnosis to the time treatment began. Cancer is not considered an emergency except to the person diagnosed with it
Work on your patience because it is going to be a waiting game for sure. Waiting on appointments, waiting on test and scans, waiting on results waiting, waiting, waiting. Praying for you -
Marc, when you have cancer nothing is normal and everything is normal. Keep leaning on our Heavenly Father the Great Physician.
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The cancer can re-mutate while on targeted therapy drugs and if that happens there are newer more effective drugs than the one I am on that hopefully will work for me. I was not a candidate for surgery.
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I was diagnosed with stage 4 adenocarcinoma and tested positive for the ALK mutation nearly 15 months ago. I was not a candidate for surgery. I was immediately started on an oral targeted therapy drug Xalkori (crizotinib) and have had no progression and have remained stable on this drug. I had a few side effects in the beginning mostly some visual disturbance when walking from a dark room into a lighted room. I had several bouts of diarrhea which was resolved with a probiotic. If you test positive for certain gene mutations targeted therapy is recommended for the first line of treatment in many cases.
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I am an ALKie also. I have been on Xakori (crizotinib) now for 15 months and am still stable. So glad to know there is another line of defense if and when the Xalkori becomes ineffective.
Update: after being on Xalkori for 29 months with great results I began having some progression so was switched to Alecensa (alectinib) 5 months ago and it is working even better than the Xalkori with fewer side effects. So thankful for all the advances in lung cancer treatments.
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Stevo, you have come to a great place. I think you might find a lot of help here and on the Inspire forum also. I was diagnosed with stage 4 metastatic lung cancer and tested positive for the ALK gene mutation in April of 2015. You did not say whether or not your physician tested your tumor for any mutations so I am assuming either that was not done (highly unlikely) or that you do not have one of these mutations. All of this is new to you now as it was for all of us at one time so of course you are scared and confused that is totally understandable. Please know that lung cancer is not the automatic death sentence that it was years ago, there are so many new and more effective treatments out there and more coming out everyday, don't lose hope. I think by reaching out to others that are going through or have gone through what you are is a great help and comfort. I wish you well and please keep us posted. Cancer is a hurry up and wait game so you will need to practice your patience and there will be good days and bad days and all I can tell you is to make the most of those good days and know that the bad ones won't last forever. God be with you.
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I am sorry for your diagnosis Mandy. You have many friends here though that totally understand what you are going through. What you are experiencing is what the cancer community calls scanxiety and we all go through it to some degree. Keep us posted on your results. Praying for the best.
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I am going to be setting up a booth to bring awareness and raise funds for Lung Cancer at local fairs and festivals. My booth will provide information, bandies and a donation bucket. I have acquired a small list of venues to set up my booth but would like to hear from everyone on any ideas they may have on any other settings to get our message out. I live in Mobile, AL. Thank you for any suggestions.
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I wrote this poem for my precious mother in law who lost her battle with colon cancer. I wanted everyone that did not have the pleasure of knowing her before her illness that she was so much more than that, and so are you. I hope you enjoy it.
My name is Eleanor
I have cancer, but it is not who I am.
I am not a number or the result of a
lab test.
My name is Eleanor
I am a baby at my mothers breast.
I am a toddler being thrown high in
the air by my father and giggling.
I am a young girl playing with my
dolls and my trucks.
I am a teenage girl going on my
first date full of nervous anticipation.
I am graduating high school and
trying to figure out what next.
I am a young woman walking down
the aisle with the love of my life.
I am an employee and a homemaker
I am a new mother.
I love my family, my friends, roses, cooking
and reading.
I love watching sappy old movies and
going through a box of tissues while
munching on popcorn.
I love to dance and sing.
I am a woman, a wife, a mother, a sister,
a granddaughter,a niece, an aunt, I am
a grandmother and a great grandmother.
I am all of these things and more but what
I am not is a disease.
I have cancer and it may destroy my body
but it cannot touch my spirit or my soul.
So you see although my body may have cancer it does
not have me.
My name is Eleanor. -
I went in on the 11th of this month (April) and had my routine blood work after a 3 month reprieve. My oncologist said everything looked good. When I got on line a couple of days later and pulled up my reports there were a few things that I was not sure of. If anyone can tell me if these numbers are something to be concerned about I would appreciate it. I am not very knowledegable on lab test results. I have come to trust my friends on here more than anyone else.
I am only posting the ones that were out of range, everything else looked fine.
WBC 2.9
RDW-SD 44.3
MONO 12.0
Neut 30.0
ALT 38
ALBUMIN 3.5
TOTAL PROTEIN 6.0
I had a PET/CT done today and will see the doc on Monday of next week so thought I would get your opinions before I ran them by him again since he said they looked good.
Thank you
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My husband and I were fortunate enough to walk for Lungevity in the Breathe Deep event in our hometown of Mobile, Alabama last month. We met some awesome people there who are working hard to raise awareness and funds for this terrible disease. We want to say a great big thank you to everyone who is out there giving of themselves to help garner support for lung cancer research. We literally owe you our lives!
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I was diagnosed stage 4 adenocarcinoma last April and tested positive for the ALK mutation and was started on Xalkori (an oral targeted therapy drug). I have done remarkably well on this drug. No evidence of disease 11 months out and very few side effects. Prayers going up for you both. I had a large pleural effusion also and am a non smoker which this particular gene mutation is more often found in non smokers.
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Jean, you sound like a wonderful, caring daughter. It sounds like you are doing all you can by being there for your mom and going to the doctor appointments with her. This cancer journey is confusing and an extra set of ears is always a good thing. You have come to the right place here at Lungevity you will find so many caring, helpful people. God be with you and your mom.
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I have not used Cancer Centers of America but I feel like you will get good treatment there. Good luck to you.
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Although I waited for over a month for surgery and then a couple more weeks to begin treatment I do think 4 months is a long period of time. I would definitley be asking questions of my oncologist. There may be reasons why they haven't started treatment yet possibly due to your other lung conditions, but they do need to convey that to you.
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I had VATs surgery and although I won't tell you it was a walk in the park, it was not the worse thing I have ever experienced either. I was in the hospital for 3 days (due to the fact my blood pressure dropped very low) but as for the surgery itself it went very well, I did well at home with minimal assistance and was up and out of the house within the week. God be with you as you undergo your surgery and your recovery.
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I am stage 4 adenocarcinoma ALK+ have been taking Xalkori (crizotinib) for 6 months now. I understand that this med does not protect the brain.
Anyone with brain mets? if so did you have any symptoms before finding your cancer had spread to your brain? If so what symptoms did you have?
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Newbie, how are you doing on it, any side effects? blood work ok?
I am suffering with low pulse and BP and I have always had high BP I understand the Xalkori can lower your pulse rate.
Work on your patience because it is going to be a waiting game for sure. Waiting on appointments, waiting on test and scans, waiting on results waiting, waiting, waiting. Praying for you
They figured me out...
in NSCLC GROUP
Posted
Exactly, Marc. There is a group on Facebook called Living with NSCLC ALK mutation that you may want to check out. Tom and Merita Carroll started it because Merita has the ALK mutation also. It is a closed group only for ALK positive patients.