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Mally

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  1. Like
    Mally reacted to HelenHJ in Immunotherapy for EGFR+ NSCLC   
    Seventhson,
    Thank you so much for your kind words.  They literally brought tears to my eyes.  Even though I have a loving family and many, many wonderful friends, I feel so alone fighting this battle sometimes.  It is reassuring to be in touch with people who have "been there, done that" and I truly appreciate your message.
    Hugs,
    Helen
  2. Like
    Mally reacted to HelenHJ in Immunotherapy for EGFR+ NSCLC   
    Thank you Lauren H. and Tom Galli.  You are correct, Tom.  I have stage IIIA adenocarcinoma, EGFR positive, negative PD-L1 in the primary tumor.  Supposedly ineligible for immunotherapy and frankly extremely anxious about potential side effects of Tarceva.  Seeing the oncologist on Monday, immediately following the stent pre-op.  Wish me luck!
    Thanks to both of you for your responses.
  3. Like
    Mally reacted to BridgetO in Immunotherapy for EGFR+ NSCLC   
    May you live long and prosper! There is life after and with cancer. I'm 73, have had two other cancers besides my lung cancer, one of them Stage 3 and with a "dismal prognosis". And here I am today, NED (no evidennce of disease) on all 3 cancers.  I have some long term side effects from treatment, but my life is good, I travel (when I can afford it!) and I'm getting ready to start a new part time job, to add to the travel fund. So don't throw in the towel. I look forward to hearing how the stent procedure goes.
  4. Like
    Mally reacted to HelenHJ in Immunotherapy for EGFR+ NSCLC   
    I'm new to this site and to such forums in general, but I'll give it a try.  In July I was diagnosed with lung cancer.  At the time a bronchoscopy was unsuccessful with respect to typing and staging the cancer, so I underwent a right lower lobectomy.  It was determined that I have (or had) Stage IIIA adenocarcinoma.  The tumor was successfully removed, together with numerous lymph nodes, many of which were malignant.  The tumor was negative for PD-L1, although the immune cells were 5% positive for PD-L1. Regardless, the oncologist said I was not eligible for immunotherapy based on the PD-L1 results.  He wants me to start a regimen of Tarceva and I am hesitant to do so based on the reported side effects.  I am a 68-year-old caucasian female and the results of a recent CEA rest showed 1.0.  The test indicated that anything less than 2.5 in a non-smoker is "normal" and I am taking that to mean "cancer free."  I am so confused and overwhelmed.  Any advice?
  5. Like
    Mally reacted to BridgetO in Immunotherapy for EGFR+ NSCLC   
    Hi Helen and welcome.
    I don't know the answers to your questions. There are some forum members who probably do, and i hope you'll hear from them. My only advice is to keep asking questions (including of your oncologist until you get answers that make sense to you. If you don't like or don't understand what your onc is telling you, a second opinion is an option. Are you being seen at a major cancer center? 
    Hang in there!
    Bridget
  6. Like
    Mally reacted to LexieCat in Immunotherapy for EGFR+ NSCLC   
    Hi, Helen, and welcome.
    No, the results do not mean you're "cancer free."  The fact that cancer was found in your lymph nodes means it has spread, and that's also what the staging tells you.  The lobectomy removed the primary tumor, but not the cancer cells that have spread to your lymph nodes (and possibly other parts of your body).  So you will need to have some kind of drug-based therapy to kill those other cells.  
    Not everyone experiences the same side effects, nor with the same intensity.  Side effects can be managed--there are lots of folks here who can give you tips for ways to do that.
    I hope you will continue with treatment.  Cancer treatment is improving all the time, and you could have many, many years of life ahead of you if you opt for treatment.
  7. Like
    Mally reacted to HelenHJ in Immunotherapy for EGFR+ NSCLC   
    Thank you Bridget0 and LexieCat.  I am getting increasingly depressed.  I don't feel strong enough to weather the storm as it were.  Maybe after I have the stent placed in my right coronary artery on Tuesday -- if I survive that -- I will feel better, but right now I am overwhelmed.  I am very anxious about starting Tarceva and the prospect of becoming even more tired and nauseated.  Also, I'm not sure if I can qualify for payment assistance from the drug manufacturer and I darned sure can't afford to pay a $4,000 monthly co-pay.  I'm not the type for pity parties, believe me, but I'm about ready to throw in the towel.  Should I try to enroll in a clinical trial, assuming there is one available nearby to where I live?  I am currently running a small animal rescue organization by myself and I need to continue working at my paralegal job in order to afford my supplemental private insurance.  Sigh.  
  8. Like
    Mally reacted to LexieCat in Immunotherapy for EGFR+ NSCLC   
    I'd suggest talking with a social worker or patient advocate or patient navigator at the place where you're receiving care.  They often know about ways to help pay for care.  There's almost always a way to do it.  
    Hang in there, but do reach out and let people know who might be able to help.
  9. Like
    Mally reacted to BridgetO in Immunotherapy for EGFR+ NSCLC   
    Hang in there< Helen. Are you taking an antidepressant. A lot of cancer patients and survivors, including me, find them helpful in coping with cancer and treatment. 
    Bridget O
  10. Like
    Mally reacted to Susan N. in Newly joined.   
    Dear All,
    My name is Susan. I got diagnosed with stage 4 lung cancer that met to the spine over the memorial weekend. Never smoke, never drink, and only 41 years old. We cried out loud,cried with no tears, feeling like the life stops for me, no more will to live. But then I found this forum where I can find myself not alone. Please keep me in your prayers. Thanks everyone.
     
  11. Like
    Mally reacted to Tom Galli in Newly joined.   
    Susan,
    Welcome here.  I am so sorry I am late responding to your welcome post.  I've had a trying week.  But then, so have you.
    You are a 41 year old, never smoker, diagnosed with stage IV, unspecified type, lung cancer with mets to your spine.  Memorial Day weekend was no fun.  So, here is the bottom line up front. You are wondering what are your changes of surviving this mayhem.  I'd say about as good as mine.  I had a horrible journey from diagnoses through no evidence of disease (NED) #1, to NED #2, to NED #3 to NED #4.  Four recurrences from my diagnosis date of February 4, 2003 through my current NED date of March 7, 2007.  If I can live, so can you.  Oh by the way, since you are alive after diagnosis, you are officially a lung cancer survivor!  Welcome to our club!
    When things in your life settle down a bit, we'll need to know more information about your lung cancer to help you understand and cope with what is ahead treatment wise.  Lung cancer comes in different in two basic types: small cell, and non small cell.  Non small cell has three major sub types: adenocarcinoma, squamous cell, and large cell.  You can and should read about lung cancer types here.  If you've had your biopsy, the pathology report will identify your type.  Let us know if you are comfortable revealing the information.
    If you are stage 4, then surgery is generally not an option.  Fifteen years ago, your situation would have been bleak.  Now however, believe it or not, your treatment and outcome expectations have real success opportunities.  There are so many new treatments from precision radiation to immunotherapy to targeted therapy. (I've hyperlinked each new treatment so you can read about it.) Then we have new clinical trials that are showing very promising results. Once we know your type of cancer, we can suggest trials but to wet your appetite, read this about exciting new trials underway at the National Cancer Institute as but one example. So, there is more than hope for you; there is a meaningful probability of extended life.  How long?  I'm still counting.
    You are not alone.  We've been down the path you are on.  We will help you navigate treatment and share our tips and tricks.  
    Read into our disease.  Knowledge provides the power to ask the "terribly preceptive questions" of your treatment team.  We are part of your knowledge base.  Ask us questions.  I dare say we have a full spectrum of survivors on board who stand ready to lend their support.
    Please try and not consult Dr. Google about survival statistics.  They don't mean much these days because they are based on outdated information and do not reflect the survival impacts of new treatments.  Moreover, they are very weekly constructed statistical data with uncontrolled inputs and unknown outputs. By that I mean that only age, type, stage, date of diagnosis, race and gender are inputs to the national data base for everyone diagnosed.  But no medical history is included so someone could have say heart problems and that symptom would not be included in the data.  Moreover, there is very little information on the cause of death, when death occurs.  A survivor could be hit by a bus and it still counts as a statistical death by lung cancer.  So for a lot of reasons, steer well clear of Dr. Google and his take on survival statistics. If you are interested in understanding the shortfalls of medical statistics, listen to this essay by Dr. Stephen J. Gould.
    I know this is a lot to take in but take your time, read in, and ask your questions.
    Stay the course.
    Tom
  12. Like
    Mally reacted to pammie in Here's What I Did To Fight SCLC   
    Thanks for you tips Don. I do have a question. some nutionists think corn syrup or a lot of sugar is bad for people with cancer. Do you think drinking a lot of water washes the blood sugar out or corn syrup thing is another theory without any merit? thanks pammie
  13. Like
    Mally reacted to Addie in Here's What I Did To Fight SCLC   
    Don....
    This post is wonderful. It's such an expression of your spirit and your survivorship.
    You know, part of what works or doesn't work, I think, is in the BELIEVING that it will work! Of course, some good common sense things to do to take care of ourselves helps a lot. And your message is full of such things.
    I never realized what you said about thin skinned fruits...but I can tell you that the one fruit I've eaten even thru chest rad, was cantaloup. I still crave it sometimes! I do eat an apple once in a while but I cut the skin off.
    I'm so pleased you are doing well...and I'm going to print out your advice. I'm not saying I can or will follow it all...but so much of it is sensible and easy, that I'll beef up my efforts.
    Love your comment about the fat cow...AND until our recent trip west and a loss of just 4-5 lbs, my weight has stayed stable and I work at keeping it that way!
    Thanks again for your great advice! Stay well.
  14. Like
    Mally reacted to ginnyde in Here's What I Did To Fight SCLC   
    Don,
    Thank you for all this useful information. You truly do understand the spirit of this site.
  15. Like
    Mally reacted to Calintay in Here's What I Did To Fight SCLC   
    Thank you so much Don. Everything you said made so much sense.
  16. Like
    Mally reacted to Don in Here's What I Did To Fight SCLC   
    This will be long so sit back relax and say I CAN DO THIS:
    1. Had a long talk with the lord of course one sided, he choose not to speak. I explained that this cancer thing was alot bigger than I could handle and ask him to handle it. Said Lord, I know if I die that I will wake up and be in heaven and attend a real big family reuinon and I thought that was great. If I wake up here thats OK too. I have my wife, family, friends, my horses, dogs, cats, and maybe I can help someone else so you handle this. My promise to him was I would always talk to someone everyday about the lord, someone everyday about their cancer (not mine), and I would encourage people to quit smoking like me(3 weeks before I was told I had cancer). Well a friend gave me a coin with a cross on one side and the prayer from Mark on the other that said: With God ALL THINGS ARE POSSIBLE. Well I carried this coin in my pocket at all times and when I was scared, nervous, or unsure I would rub that coin between my fingers until I remembered that my faith was stronger than the cancer.Today I buy those coins by the box and pass one out everytime I go somewhere. Especially when I go and visit at oncology ward.
    2. I had to realize that I wasnt punished just bad luck. I went to the hospital for radiation and chemo and I would sit in the lobby at Brook Army Medical Center and watch people come in without legs, arms, young kids from Iraq with their faces nose, ears burnt off. And I mean off. They are 19 and 20 and will walk the rest of their life with these marks. Hm can you see my cancer. Nope. So I would make it a habit to sit and talk with them over lunch and let them know that its whats inside that counts and again, the lord will take care of them.
    3. Well after my pity thing was over I began to start a new life, a life with cancer living inside of me. Now you have a choice here: Let the cancer control your life or you control the cancers life. By now you know what I did..
    4. Now here is the plain facts and its so simple.
    I raise horses and cattle and I remembered a old saying of mine. Have you ever seen a fat cow die. NOPE. The skinny ones do all the time. So here I am with a fried throat from radiation and cant eat and the doc's want to put a tube in my belly. Hm, again not a chance that this is going to happen so for 4 1/2 months while I couldnt eat solid food I drank 4-5 ice cream shakes a day, bowls and bowls of ice cream, Nestle's milks of banana's, vanilla, 3-4 cans of boost and I went from 165 to 210 during that 4 months. Also and here is a biggie hint, I ate a half watermelon everyday. Has that old vitamin (Lycopene) that doc's are now figuring out that helps fight cancer. Gave me the water I needed also and is a natural stool softner for me and I love ice cream and watermelon so seemed like a wise idea to me. LOL. Boost has many many vitamins in it so that really helps. Now while I am talking about vitamins I asked my onc, if I take vitamins during chemo can you for sure tell me that the vitamins will not help to heal cancer cells like it does good cells. He said and I quote, no, I cant tell you for sure that it will not help cancer cells to come back. Well, Boost is made to help your system with vitamins so that is all I used. After chemo stopped yes then I went on to a multi-vitamin called Miracle 2000 wich just seem to have a good balance but also had high seleium which is good to fight cancer cells. Got it at GNC. During chemo you do not want to eat thin skin fruit. Like apples, grapes, and such. The dirt and pesticides can lay under the skin so if you have to eat them make sure they are cooked. Eat lots of bananas, cantalope, watermelon and thick skinned fruit. All meat should be well done and please eat more fish than red meat. When your counts are down from chemo you can get any infection there is and then some. After I could eat I had plenty of cottage cheese with green olives. Lots of salads, veggies, carrots, and made up for 53 years of not eating veggies LOL my mom loved it.
    5. Drink one gallon of water everyt day. Each time you drink a glass think to yourself I am washing my cancer away. I am washing my cancer away. Positive mind picks up where the oncs leave off. I told myself that Cancer was a temporary inconvience and I believed it.
    6. Lots and lots of green tea. Hot with orange blossom honey in it. Very tasty. Would drop a peppermint or spearmint candy in it now and then. At night I couldnt sleep like most of you so I would have a big cup of sleepy time tea then take my sleeping pill. Well after awhile you condition your body to go hmmmm sleepy time tea , lights out. Got off the sleeping pills that way. Condition your mind and body to work for you not the cancer.
    They also have a Lipton Green Tea out now. Its a cold drink that has citrus in it and is very tasty. Remember Green Tea, GOOD.
    7. Your body heals best when you sleep so sleep away. I would get up in the morning so I could go lay on sofa and take a nap. Buy a big screen TV and rent lots and lots of movies. Take care of yourself, make yourself the number one priority in your life for a change. When you get better you can pick up where you left off or maybe change your life altogether.
    8. A pet is always a good caregiver. Will lay with you and give you something in your heart that will comfort you 24/7.
    9. Walking. When you can force yourself to walk and help them muscles. My wife and I would walk miles and miles when I could get up. Better to throw up outside than in the house anyway. By the way, after all this I am not on oxygen either and I believe its cause I walked alot even when it hurt.
    Well in closing this is not a commercial, ad or a must do. This is what I did cause I wanted too. I might die from a truck, a horse bucking me off, maybe a heart attack but I WILL NOT DIE FROM CANCER.
    Take care and God Bless,
    Don
    Feel free to ask me a question but ask it here where everyone can read it.
  17. Like
    Mally reacted to Keith1955 in A nodule   
    They called today with the results of my PET Scan and said they believe the nodule is benign. 
  18. Like
    Mally reacted to Tom Galli in A nodule   
    Ernest, Ray and Rbarlow, welcome here.
    I try and promptly welcome all the new folks but see you've met one another and are properly introduced.  I'm Tom and we all have but one thing in common.  We all are experiencing or have experienced life on the staging and typing trail.  My trail started on February 4, 2004 by coughing up blood and after a CT resulted in a diagnosis with a 7 cm long tumor filling the main stem bronchus of my right lung. One day I was fine, not even short of breath, and the next I was not.  A biopsy confirmed non small cell, Squamous cell, lung cancer.  
    You have nodules now and hopefully they will remain just nodules.  There are lots of causes and here is my go to source for the causes.  Staging by the way is a way of describing the extent of cancer.  Typing results from a pathologist examination of tissue from a biopsy.  Biopsies can be obtained by a needle, a surgical procedure, or as part of a surgical resection of your nodule.  The results of staging and typing allow a treatment plan to be formulated. 
    One of our members jokingly referred to me as a Jurassic Era survivor and indeed I've been around a long time.  I sum up all my experience with but two suggestions.  First, know the enemy -- learn about lung cancer.  I hyperlinked material from our Lung Cancer 101 resource.  I suggest reading every section from beginning to end, perhaps three times.  Second, read my profile, the About Me section.  After reading, I suggest that if you have lung cancer and I can survive, so can you.
    I sincerely hope your journey on the trail is a short one.  If not, then this place is where you'll find an unusual amalgamation of knowledge and experience that may advantage your treatment. So, welcome here.
    Stay the course.
    Tom
  19. Thanks
    Mally reacted to BridgetO in Welcome New Moderator BridgetO   
    I'm honored to have been asked to become a moderator for LCSC.  I'm a survivor of 3 primary cancers. I  had a Stage 1 breast cancer in 2008 with a lunpectomy and radiation. Then in 2011, a Stage 3 cervical cancer, a  rare and aggressive type of cervical. I had  a radical surgery, then concurrent chemo and radiation and additional chemo. I had a long recovery with a lot of late occurring treatment side effects, some of which are permanent. During a routine surveillance CT scan for that cancer, a nodule was found in my right lung. In November last year I had a right lower lobectomy, and was diagnosed, as Lauren said, with stage 1 adenocarcinoma, KRAS mutation. I'm now NED on all 3 cancers. Whoo! 
    I've learned a lot about lung cancer in the last year, much of it from the Lungevity website and this forum. And I've really appreciated the support and hope I've gotten  from forum members. I've been in a gynecologic cancer support group here in Portland, which has been great. I was hoping to find a lung cancer support group here, but surprisingly for a big city with a big cancer center, there doesn't seem to be one. So this forum has been especially important to me. 
    About me: I'm 72 years old. I was a case manager working mostly with adults with intellectual and developmental disabilities. I retired, sort of, at age 57. Since t then, I've been working at a variety of jobs, when not traveling or having cancer treatment. I spent a year teaching English in Poland. I've worked both as a volunteer and paid staff  with homeless and recently homeless people. Most recently, I was back working part time as a case manager. I decided to "retire" again a year ago when I began having tests for what turned out to be lung cancer.  I travel when opportunities arise, and I'm always looking for opportunities. I just got back from a women's cancer retreat in Montana. No trips planned right now, but I'm looking for something for spring. I read a lot, do water aerobics 2 or 3 times a week, walk usually daily, do beadwork, and volunteer with a  non-profit group for tree-related activities such as pruning small trees. I'm a member of my Neighborhood Emergency Team (NET, these are called CERTs in most parts of the country.) and I'm working with neighbors on my block to prepare for disasters- the most likely one in Portland is a devastating earthquake. It would be as bad as one of the big hurricanes and maybe worse since there would be no warning. So, as you can see I'm busy. I'm determined not to waste my "rare and precious life" ( I think that's from a poem by Mary Oliver), but to do things that I love and that have meaning to me. I try not to worry about the cancers, but of course I do anyway,  Generally, I am able not to use up too much energy on worrying.
    So, Forum folks, please post often. I love to hear what's going on with you and to learn from  all of you.  
    Bridget O
  20. Like
    Mally reacted to MaryTD777 in Happy cancerversary!   
    Susan, wonderful news!! Congratulations on your first cancerversary!! May there be many, MANY more!!



    Sent from my SM-N920V using Tapatalk


  21. Like
    Mally reacted to Susan Cornett in Happy cancerversary!   
    One year ago today, I was diagnosed with late stage lung cancer following a lobectomy of my upper left lung.  The rest of 2016 brought chemo, a second surgery, a second cancer diagnosis, and enough anxiety to power a small city.  But all that matters is I AM ALIVE TODAY.  There are so many cancer patients who don't make it this far and I will not take this for granted.  I have three trips planned this year and get to see my precious niece marry the love of her life in a couple of months.  
    Now I just have to get through tomorrow's scan results. 
  22. Like
    Mally reacted to Tom Galli in Just told I had a 1 cm spot on my lung   
    Pearl,
    Wow, that is a tough question. 1 cm is a very small nodule; in inches it would measure a little less than 1/2 an inch. First, understand what a lung nodule is and what causes them. Here is a Cleveland Clinic description I refer to often.  You can see there are many things that cause lung nodules.  So given your past test history with no finds and now this very small nodule, I'd say you have a decent chance.
    The only way to know for certain is to have a biopsy and the most common procedure is a needle biopsy.  A pathologist will view the biopsy sample and determine if it is lung cancer and if it is, what type of lung cancer.  So at this juncture, I'd try and relax until a biopsy is ordered.  There is a very real possibility that your doctors may want to postpone the biopsy.  The very small nodule is a hard to hit target and doctors may suggest waiting several months and repeating the scan so see if the nodule displays changes.  This type of delay for very small nodules is not uncommon, so prepare for that eventuality.
    If your mind is not at ease about waiting, you might ask your doctors to run a PET scan.  PET scans can display metastatic activity in areas of the body where there is cancer and if the PET shows no metastatic activity, you'll likely wait perhaps 6 months for a further scan.
    Stay the course.
    Tom
     
  23. Like
    Mally reacted to Tom Galli in Small cell   
    Michele,
    I've know many SCLC survivors who've been successfully treated.  Unfortunately, like any form of lung cancer, I know of those with small cell who achieved NED (no evidence of disease) but experienced a recurrence.  And, I know of those whose treatment did not have an effect.  Most importantly, all of my small cell acquaintances were before the emergence of new treatment method of immunotherapy.  You can read about it here and here.
    We don't use the word cure in the cancer community.  Regardless of type of lung cancer, it recurs frequently.  I still see my oncologist two times per year and I've lived more than 13 years after diagnosis.  So, extended life is achievable but no one knows how long the extension will be for any lung cancer patient.  
    Stay the course.
    Tom
     
  24. Like
    Mally reacted to Tom Galli in New to this, waiting on diagnosis   
    I completely agree with Susan.  There is no harm in calling the doctor's office that ordered the biopsy to see if results are available.  Generally, however, doctors want to see you to explain the results of a biopsy because the explanation will naturally evolve into a discussion of treatment possibilities.
    Here is an idea.  Check with the doctor's office staff to find out when biopsy results will be available, then schedule an appointment the day after that date.  If the results are late, then call and reschedule the appointment.  That way you have an appointment booked and the doctor will have time to explain the results and discuss treatment alternatives.
    Stay the course.
    Tom
  25. Like
    Mally reacted to Susan Cornett in New to this, waiting on diagnosis   
    I know this is a scary time; waiting on results is so nerve-wracking.  Did you doctor give you an idea of when he/she would call? There's no harm in calling his/her office to see if the results are available now.  Please let us know how it goes.  
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