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  1. Like
    Meloni reacted to Susan Cornett in Hi, I'm Susan - Stage IIIa adenocarcinoma   
    I've had a good experience with cisplatin and alimta, but that's not to say I haven't had some side effects.  My fabulous oncologist has kept my nausea under control with a combination of meds.  The most aggravating side effect thus far has been ringing in my ears.  I've also had some neuropathy.  My fourth and final treatment is Friday and I'm guessing the side effects will be a little worse the next couple of weeks.  Fatigue has been an issue, too, but I've quickly discovered that laundry can wait for a day or two until I feel good enough to deal with it.
    My advice to you is this:  keep your provider in the loop on your side effects.  Chemo side effects can be managed so much better than in the past.  Good luck to you and I'll keep you in my thoughts. 
  2. Like
    Meloni got a reaction from Tom Galli in Stage 2B adnocarcinoma - lobectomy and facing chemo next week   
    Hi Karen!
    I've completed two rounds of the same chemo that's being recommended for you. 
    I was diagnosed with IIIA NSCLC on February 15 of this year. I'm scheduled for a RML lobectomy on May 23, and I'll probably do some more chemo after surgery. 
    There are side effects, and the severity varies from person to person. Fortunately, they have great medicine to mitigate the side effects. They want us to successfully complete the treatment, because not completing the treatment is no bueno for kicking cancer's butt.
    Here are some side effects I experienced, as well as what doctors did to help me. Your mileage may vary. 
    Nausea - I disliked this one the most. Fortunately, they loaded me up with lots of anti-nausea meds, gave me IV hydration appointments in-between appointments, which included IV anti-nausea and anti-stress meds, and were willing to experiment with new meds if what I used wasn't strong enough.  Smells and Taste - I became hypersensitive to smells, and things began to taste funny. Some people prefer hot food during chemo, I preferred cold, because it had less scent.  Weight Loss - No doubt related to the above two side effects, I lost weight quickly, because I didn't feel well, and things tasted and smelt terrible to me. The doctors don't like this at all. They gave me doses of steroid, additional anti-nausea meds and hydration, and marinol to stimulate my appetite. Fatigue - This varies from day to day, and may vary at time of day. Naps are essential, but so are walks, even if they are baby strolls through the backyard.  Hair Loss - I haven't lost all of my hair yet. It's gotten noticeably thinner. I suspect it will get much thinner after the next rounds. The severity of hair loss varies from person to person.  I was very nervous as well. I'm nervous about the upcoming surgery too! Do you have a support system at home? Friends and family who can be there while you receive chemo? I have found that to be very helpful. Are you scheduled to actually receive the chemo on Monday, or are they still setting you up? If you are receiving it, have they installed a port, and given you an "education class", etc? 
    Although the above side effects look unpleasant, I agree with Tom. It's worth pushing through. You've been through the tough part. They really do have great ways of dealing with the unpleasant side effects, because THEY WANT YOU TO SUCCEED.
    Oh, and stay hydrated! It's really important.
  3. Like
    Meloni reacted to Tom Galli in Newly Diagnosed Adenocarcinoma - 40 year-old   
    Wonderful to hear from you again!  Glad you are almost finished with treatment.  I hope you don't have too much scanziety waiting for your post-treatment PET scan.
    You went down the same treatment path as me.  Pre-surgical radiation and chemo. Let us know what the post-treatment scan reveals.  If you are accepted for surgery, I'll give you my laundry list of surgical information.  For now, let's just focus on recovering your strength and hoping (praying) for a great post-treatment scan!
    Stay the course.
  4. Like
    Meloni reacted to KatieB in Newly Diagnosed Adenocarcinoma - 40 year-old   
    I'm looking forward to watching you "kick this stuff in the butt".  I've been reading and keeping up with your journey so far.  Sounds like you have a great team beside you and a good plan in place.  Best wishes for you during the nausea and side effects.  Hoping you recover swiftly.  Please keep posting and updating when you can,
    Best hopes,
  5. Like
    Meloni reacted to Tom Galli in INTRODUCE YOURSELF   
    Welcome aboard.  You've obviously been through treatment - a lot I'd venture with more than a decade of survival under your belt.  I'm still looking for answers also if it is any consolation.  
    This is a good place.  Settle in and get to know folks.  Your experience to the newly diagnosed will be invaluable.
    Was watching a re-run of The Shawshank Redemption last night.  This was in Andy's letter read by Ned near the end of the movie.  "Hope is a good thing.  Maybe the best of things and no good thing ever dies."
    Stay the course.
  6. Like
    Meloni got a reaction from KatieB in Newly Diagnosed Adenocarcinoma - 40 year-old   
    Hello all,
    It's been a chaotic time. I had lots of set-up last week. First chemo and radiation treatment happened yesterday, and my 2nd radiation was today. 
    We met with the RAD doc on Friday, and he said that due to my good health and age, he'd like to be more aggressive and consider surgery after this round of chemo and rad. He'd also like to pursue the genetic / mutation / whatever testing, even though my Stage cancer isn't typically approved (IIIA), and he's going to try to get an exception, or work something out. You can really see he's thinking steps ahead, but I think he also wants everyone tested, and the "system" just isn't there yet. 
    Anyway, I'm at work, trying to catch up with a few things. It also gives me some alone time. I'm feeling a little bit smothered. Everybody wants to talk about cancer. I'd like to talk about other things while I still feel kind of good. I see why Jesus needed 40 days and nights in the wilderness every now and again. : )
  7. Like
    Meloni reacted to Tom Galli in How to Help Someone with Lung Cancer / by Katie Brown   
    Five superb ways to help!
    I'd add one: Try to find a way to remind your physicians and medical staff who treat you that you are a person, not a patient.  A patient is a "thing".  Too many of us are treated like things.
    Stay the course.
  8. Like
    Meloni reacted to Tom Galli in New Caregiver-28 year old NSCLC   
    I'd rather not be welcoming you to our site.  Folks your age are still in the spring break phase of your lives, not the lung cancer treatment phase.
    The Cleveland Clinic has a superb reputation.  My reading of Gilotrif suggests it produces very good results for those Adenocarcinoma folks with EGFR and Del 19 presentation.  I had a similar drug in my early treatment (Tarceva) but at that time, doctors didn't really understand why it worked.  As it turns out it didn't work on squamous cell, my form of NSCLC.  It has two similar side effects - diarrhea and "skin rash".  I took a pill once a day and the diarrhea was a nightmare.  The rash came on later and, well, message me and I'll tell you about the rash.  When I went on line and asked for help with Tarceva's diarrhea, a fellow survivor suggested in have a bowl of plain steamed rice in the morning about 15 minutes before I took my pill.  My diarrhea laughed at Imodium but respected the rice.  Go figure!
    Strap in, lock and load and prepare for a wild ride.  Lots of us here have experienced the ride and are still strapping in.  If I can live, so can John.
    You'll have plenty of questions and we'll always try and provide answers.
    Stay the course.
  9. Like
    Meloni reacted to Tom Galli in Newly Diagnosed Adenocarcinoma - 40 year-old   
    OK - you are typed, staged and locked and loaded for treatment.  You've already received some great medical advice - a port installation will make vein access a non problem!
    For me, radiation was the inverse of March:  it came in like a lamb and left like a lion.  The first 2 1/2 weeks were a snap.  Then skin on my chest started getting red and painful and my throat became dry producing a non-productive, near constant hack.  Stock up on Solarcaine, Halls lemon drops, Chloraseptic, and don't hesitate to ask your radiation oncologist for the "magic mouthwash" elixir they often provide.
    If your chemo is concurrent with radiation, it may be adjunct therapy.  It will likely be administered once per week and it will be a reduced strength.  Radiation is the killing agent; chemo cleans up the blood stream and attacks cells dislodged during radiation.  So, you may not suffer chemo related side effects at all.  I had taxol carboplatin as my adjunct, once weekly, treatment and had just a twinge of unsettled stomach about 3 days after infusion.  I didn't even lose my hair!
    Use your smartphone calendar to track the onset of problems.  Also, some smartphones have notes apps that are really convenient for posting a "how I'm feeling today" daily journal.  You can use that journal when you have consultations with the radio oncologist or medical oncologist to discuss the onset and severity of side effects.  Timing is important because once you know how the chemo drugs are affecting you, the effect will be repetitive and taking mitigating medication just before onset of the problem is really helpful. Also use the note function to record all the medications and prescriptions (type, strength, dose) you are taking.  Even now, at my doctor visits, I just open up the note app and hand it to the nurse.  Your prescription status will become complicated. 
    Now that you are in treatment, you'll need to have a "cancer calendar" (paper or digital) and a "cancer notebook" (paper or digital).  I use my smartphone for both but in the early days, I walked around with a paper calendar and notebook in a 3 right binder.  Your calendar will quickly become complicated so schedule management is essential.
    Be prepared to be "knocked off your feet" the last several weeks of radiation.  I was so weak, I could hardly make it from the car to the clinic.  That was radiation's lion's roar for me.  I needed someone to drive me everywhere during the last 3 weeks of radiation and was pretty much confined to bed from an absolute lack of energy.
    Eat a lot.  My appetite disappeared during the last 3 or so weeks of radiation and food I enjoyed developed unappetizing taste.  Tart foods like dill pickles, cranberry juice, grapefruit, key lime pie, and lemon-lime gummy bears became my late stage radiation diet.  This is the wrong time to go on a diet because you'll likely lose weight and your body will need energy in the form of calories to replace cells disturbed by treatment.  
    Stay the course.
  10. Like
    Meloni got a reaction from bjacksontex in Newly Diagnosed Adenocarcinoma - 40 year-old   
    Thank you Mary, Barb, and all!
    My husband and I met with the oncologist on Friday, as planned. In a nutshell, the brain MRI came back clean (nuttin' going on upstairs, <snicker>). The cancer has been staged as IIIA. Doc says treatment will be with the goal of remission and cure, and we are going to start with chemo and rad therapy, done concurrently. Tomorrow I meet with the rad doctor for the consult (6 weeks of therapy, but she'll give me the rundown); Tues my chemo port will be installed, and Friday I meet with the ARNP for an education in chemo. Treatment for both will start the week after (March 7).
  11. Like
    Meloni got a reaction from bjacksontex in Newly Diagnosed Adenocarcinoma - 40 year-old   
    Thank you Barb and Tom!
    My MRI was on Tuesday. Like the CAT scan, PET scan, and bronchoscopy, it was my first of that type of procedure. Very noisy, and I felt like Hannibal Lector when the placed the hood device over my head and face.
    My next appointment with the oncologist is tomorrow, and it's been a test of patience, wondering what's going on in my body, and how my life will be changing.
    Tom, you have mentioned genetics in some of your posts. Do you have some keywords that might help narrow my research regarding that? The doctors have asked about my family history, and it was tough to immediately answer because the father who raised me, passed from lung cancer at 48, but he was not my biological father. All of my siblings (1/2 siblings, genetically speaking), are cancer-free, but I am also the oldest. My biological father, whom I have only recently reconnected with, has disclosed that he has COPD (industrial exposure), his father passed from lung cancer, his paternal grandfather passed from a type of cancer, and my father's sister passed from lung cancer last year. I have no idea if that's relevant, but thought I could add it to the info if it would be helpful. 
    Thank you for your help, and also about the notebook Barb!
  12. Like
    Meloni reacted to Tom Galli in Newly Diagnosed Adenocarcinoma - 40 year-old   
    I'm afraid I can't help you much on the genetic front.  The small amount of knowledge I have relates to the new science of developing targeted therapy to attack certain subtypes of cancer that display mutations in their DNA.
    My oncologist asked about my family history for lung cancer and also many other diseases.  I didn't have anyone who had it in my family.  That said, there is a book that you might read that provided me a wealth of information about cancer.  And, you may have some time on your hands that a good book might fill.  The Emperor of All Maladies by Siddharta Mukherjee is superb and there is a wealth of information about the genetics of cancer.
    I hope your consult goes well.
    Stay the course.
  13. Like
    Meloni reacted to Tom Galli in We finally have a diagnosis for step dad   
    Exactly my recipe of disease.
    Did the biopsy include a genetic mutation type?  If it did not, then you can have the pathologist test the sample for genetic mutation (pathology samples are always kept).  This is important because of new treatment methods that are very successful in treating NSC Squamous cell LC.  Here is the youtube cite for Dr. Lecia Sequist's video on advances in biomarker profiling for lung cancer - 
    Okay upper lobe left lung tumor location, proximity to trachea and radiation will yield challenges in radiation treatment.  I had those also.  Pain may increase as may swallowing difficulty.  It sounds like the radio oncologist is going to incrementally treat the main tumor to shrink it stages to minimize radiation induced side effects.  Get a prescription for "magic mouthwash" or that elixir given to radiation patients to relive irritated throat and dry cough.  Have some chloraseptic throat spray on hand.  During my radiation, I lived on Halls lemon drop cough drops.
    I don't know if he is going to have adjunct chemotherapy concurrent with radiation or full strength infusions.  Normally, during first line treatment, radiation is the primary therapy and chemo is secondary.  When this is the case, the chemo is referred to as adjunct therapy.  If adjunct, then it is typically given at a lower strength then when administered alone.  Ask your doctor to qualify if the taxol - carboplatin combination therapy is full strength or adjunct strength.  If adjunct, expect fewer side effects from chemo.  Here is a primmer on chemo side effects that might be interesting reading - http://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/chemotherapy
    As for survival statistics, leave those for later consideration.  Your dad is choosing treatment and therefore life.  Attitude, I believe is important to a successful outcome.  He and you need to believe you are going to have a successful outcome and that success yields far longer life than 6 to 8 months.
    Stay the course.
  14. Like
    Meloni reacted to Tom Galli in stage 3b non small cell/ my story   
    Welcome here.
    Excepting motherhood, I've been exactly where you are now.  At diagnosis, my surgeon told me I was not a surgical candidate.  But my oncologist figured out a way to shrink the tumor to allow surgery.  I had a years worth of post surgical complications from removing my right lung and during that period, the cancer migrated to my left lung.  I was then right where you are - on the 20% five-year survival curve.  Come February 4th, good Lord willing, I will have survived 12 years from non small cell, squamous cell, lung cancer.
    It took all kinds of treatment, most of that was unsuccessful.  I had lots of nervous time anticipating and waiting for scans, so much so, I coined a term for the special anxiety we lung cancer patients experience - "Scanziety"!  I was absolutely afraid, then depressed, then afraid and depressed.  But I believed I'd be one of the 20% and if I could live one year, why not five?  When I got to five, why not ten?
    After you digest this, I've got some information on understanding survival statistics that you may find comforting.  But for right now, I'll keep it simple.  You've got to want to survive to survive.  You've got to believe you will live to live.  I believe attitude is of ultimate importance in arresting your disease.  And, you can influence your attitude about survival, treatment and life.  You are in charge of your feelings and beliefs.  They are about the only thing you can control during lung cancer treatment, so grab the control and believe you are going to make that 20%.  Believe you are going to make the 1% or the 1/2% who go on to have lengthy lives after treatment.
    Show up to treatment armed with this positive attitude and unshakable belief in life and tell the doctors to "bring it on"!  
    Stay the course.
  15. Like
    Meloni reacted to bjacksontex in Newly Diagnosed Adenocarcinoma - 40 year-old   
    One other thing....always take your 3 ring binder with all your appointments and pages for questions...and map of facility. And blank pages to journal. To cuss & scream!
    Sent from my iPad using Tapatalk
  16. Like
    Meloni reacted to Tom Galli in Newly Diagnosed Adenocarcinoma - 40 year-old   
    OK - I understand now.  You've got an oncologist on board and you are going to a "results revealed" consultation.  Most important advice I can give is not to go to this consultation alone.  Most of my questions would evolve around treatment options and effectiveness of each option to eliminate my cancer.  There will likely be a range of treatments and a range of effectiveness.  You and your doctor need to make the right choice, for you.  Doctors I've encountered (my own and others where I've been the second set of ears) lay out a menu of treatments along with advantages and disadvantages of each.  
    Stay connected with us and I pray you have the best possible news after your consultation.
    Stay the course.
  17. Like
    Meloni reacted to Tom Galli in New to Forum Sister diagnosed Stage 4 Extensive SCLC   
    There is no playbook.  Stage IV SCLC with extended metastasis is nasty.  
    My father was so broken inside while I was in treatment, he couldn't talk to me.  I didn't understand then; I do now but he passed before my disease was arrested and we can't talk about it.  If I could, I guess I'd tell him there is a time to live and a time to grieve and he got the order reversed.  But, I understand why.  It's that feeling of hopelessness you are describing compounded by your belief that you can't help your family member.  But you can.  How?
    Focus on the little things.  While in treatment and uncertain about outcomes, my wife became a master of the little things.  She'd tell me in the morning, we were going to have breakfast for dinner at Denny's.  She'd describe all the Grand Slam possibilities and before I realized it, I was looking forward to something - to something I would enjoy.  Then, she'd bring me a bag of Gummy Bears and I inhale Gummys but she'd dole them out to me one at a time, making me keep one in my mouth till it nearly melted away.  Then she'd engage me in choosing the best flavor.  Then she'd argue with my choice.  Then, I'd forget about my cancer.  Just for a while but those thousands of little things my wife dreamed up strung together a long period of enjoyment.  
    It is not how much time we have left; it is what we do with the time we have.  Help your family member find joy in the little things he or she loves about life.  Be a master of the little things.
    Stay the course.
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