Meloni

Thank you both.  I'm approaching this as just a flare-up from a chronic illness.  I knew that a recurrence was highly likely but I was hoping I'd have a little more freedom before this hit.  But, in all honesty, I've felt almost guilty that my first year went as smoothly as it did, so to speak.  So many people have far greater challenges than I've faced.
If the lymph node lights up on the pet scan, oncologist will refer me back to my friendly thoracic surgeon for a biopsy and to remove the  node during the process.  What sucks about that? The surgeon would have to make an incision on my neck BELOW my thyroidectomy scar - he can't use the same one.  Oh well, nothing a little jewelry won't cover.  
My concern - the one that is always there - is my parents.  I'm sure I shared this on an earlier post, but I'm an only child.  My husband and I don't have kids.  If something happens to me, who'll look after them?   My mom is my dad's caregiver.  He's had two strokes and he is currently battling lymphoma and another blood disorder.  My mom is one tough cookie.
I love this forum because I can come here to share, whine, cry, and curse; everyone here understands. Thanks for being my therapist!

Got the results of my first post-treatment CT today. No evidence of cancer. Yeah! 
I think I amused my doctor because throughout this month I've been poking and prodding everything that's even a little bit sore. I circled all my spots with a Sharpie marker so they wouldn't be missed. 
Oncologist: I'm pretty certain the cancer hasn't spread to your hang nail.
Anyway, I'm scheduled to follow-up with a CT scan in three months, and of course flush my port in-between, since he thinks I should keep it "indefinitely" until we decide otherwise. 
Meloni

I'm NED today and my labs are within my "normal" limits (magnesium deficiency, and etc).  Am doing a small dance because I'm still recovering from pertussis and pneumonia.  But, scanziety is gone till end of month August when I have a CT scan and consultation.  No it never ends but today's session ended well for me.  
Stay the course.
Tom

Hello Ncagle. 
Tom is right; lymph nodes can become enlarged for several reasons. It's good that your appointment with the hematologist is tomorrow, but the fear is totally understandable. I get really nervous when waiting for answers as well. 
Do you have a list of questions to ask your hematologist? I recommend writing them down. If they don't answer all of them during their explanation, you can ask what doesn't get covered. 
Do you have a friend or a loved one going with you tomorrow? 
Meloni

Paula,
Sadly, I completely understand your dilemma.  Here is the way I think about things.  I personally do not hope for a cure; I hope for no evidence of disease (NED).  I had a CT scan on Friday and see my oncologist on Tuesday for results.  I still see him twice a year and its been 13 years since diagnosis, and 9 years NED.  He told me however, that lung cancer is very persistent, hence the twice yearly visit.  He's often seen recurrences even after long periods of NED so he doesn't use the term cure.  Therefore, when I think about my disease and 3 recurrences after NED scans, I need to remain ready to strap on my battle rattle and fight for my life.  So I don't focus on curing or healing, I hope for NED but need to stand ready for further treatment.  That reality suggests I make each NED day enjoyable because of the likelihood of difficult treatment days.
Death is inevitable.  The only uncertainty is when.  But, after diagnosis, death had a certainty about it that I wasn't prepared for.  Death from lung cancer was frightening.  Several of my doctors talked to me about hospice and that alleviated some of my fear, especially the fear of prolonged pain.  After learning I'd be comfortable, my fear waned somewhat.  I was however depressed, especially after each recurrence.  I was severely depressed after my last recurrence and was treated with counseling and medicine.  I needed both.  One mistake I made was not seeking help for my depression earlier.  
My daughter was in her twenties when I was diagnosed.  We were frank with one another about outcomes.  This frankness did not diminish hope but we both understood the reality of cancer, its persistence, and its lethality.  I was fortunate I didn't have to explain these things to a child because the discussion would have been much harder.  
If it makes you feel any better, if Tuesday's consultation is not good news, I'm not sure what I'd do or how I deal with the news.  My wife would engage and start treatment discussions with my oncologist, but I would be depressed and would need to find courage to endure treatment and uncertain outcomes.  I hope I can find courage.
Stay the course.
Tom
 

I was diagnosed with stage 4 lung cancer in January 2016. Started Opdivo in June after 6 sessions of platinum chemo. Each ct scan has shown no new growth and no new cancer, which is good. My last ct scan showed no growth in the original spot on my lung but did show several new minuscule spots. My oncologist and myself decided to continue the current Opdivo therapy and revaluate with the next ct scan in 7 weeks. Has anyone had this experience with Opdivo and if so, was there improvement when the original treatment was continued or more growth and a switch to a new therapy?

Cynde,
Every cancer patient should be so blessed to have someone like you in their life. I am so sorry that the two of you are having to endure the seemingly unendurable. I have said before, and I still believe it, that being the caregiver is harder than being the patient. You have all the stress, worry and emotional pain, not to mention the physical toll to your body, and frequently not enough emotional support & sympathy from others since you are technically not the patient.
It seems we  humans often lash out at those closest to us...maybe because we subconciously feel we can get away with it with the person we trust the most to not leave us or strike back. It sounds as if you are doing everything humanly possible for your wife, and her medical team is doing their part to acheive the best possible outcome. Please don't forget to take care of yourself & try not to take her anger personally. I imagine she is mad as hell at cancer, the unfairness of it all and not at you.
I hope you have some supportive people in your life who can be there for you. This is a good place to find empathy, much hard-earned wisdom as well as hope &  encouragement. I wish I could just give you a big hug...a cyber-hug just isn't the same, but here's one anyway ((( ))). Best wishes...please keep up posted.
Ruthie
 

Hi I'm Paula
I am struggling with depression over my imminent (spelling)  death. People want to believe I am being healed by God and I know that is always a possibility but I need those same people to understand it is a greater possibility that I am going to die from this. Does anyone ever live more then 1 or 2 year with SCLC?  I have SCLC that is metastatic? I am in my 3rd day of my 3rd treatment. I am always told I am doing so well in handling chemo and I guess I really am but then it seems to make me look not sick to those around me which is not always a good thing.  Most of the time I live my life to the fullest as much as I can. I do the thing I love the most which is to be with my loved ones. I also shoot some photography when I am up to it which is not nearly as much as I wish I could. That's about it for now.

You have a whole team of LCSC warriors here to support you, Meloni! Tom gives great advice and many of our other moderators and members are also here to listen and to share their experiences with you. I am more than happy to help you find resources or support through LUNGevity. Let us know what we can do to help!
Lauren
--
Digital Community Manager
LUNGevity Foundation

Meloni,
I am so sorry to learn about your biopsy confirmation.  
OK, by my count, this is your first recurrence after pre-surgical radiation & chemo, then surgery, then post surgery chemo.  So your first recurrence after NED.  Certainly, this is not good news but lung cancer is persistent and many here experience recurrence.  If my memory serves, you have adenocarcinoma, correct?  And, you report the pathologist is checking for genetic markers on your biopsy sample.  I'm sure you've read about targeted therapy.  Here is a good summary to prepare you with questions for your oncologist.
And, again to refresh your memory, here is a blog I wrote sometime ago about lung cancer and persistence.  My point is that recurrences are common and should be expected. You will likely emerge from your 20 February consult with a treatment plan, and you'll need to find the courage and determination to step up to the plate and put the treatment plan in play.  We unfortunately have a disease that requires persistence, but I firmly believe that outcomes are affected by attitude -- your attitude.  OBTW -- I'm in the scanziety zone also because I have a post scan consult with my oncologist on 28 February, after 13 years NED! 
You can do this thing.  Put your battle rattle on, lock and load, and proceed purposefully to destroy your lung cancer.
Stay the course.
Tom

Meloni,
So hoping the biopsy is negative.  Let us know the news.
Stay the course.
Tom

That's wonderful news, Meloni! I'm so happy to hear it!
Lauren
--
Digital Community Manager
LUNGevity Foundation

Got the results of my first post-treatment CT today. No evidence of cancer. Yeah! 
I think I amused my doctor because throughout this month I've been poking and prodding everything that's even a little bit sore. I circled all my spots with a Sharpie marker so they wouldn't be missed. 
Oncologist: I'm pretty certain the cancer hasn't spread to your hang nail.
Anyway, I'm scheduled to follow-up with a CT scan in three months, and of course flush my port in-between, since he thinks I should keep it "indefinitely" until we decide otherwise. 
Meloni

Got the results of my first post-treatment CT today. No evidence of cancer. Yeah! 
I think I amused my doctor because throughout this month I've been poking and prodding everything that's even a little bit sore. I circled all my spots with a Sharpie marker so they wouldn't be missed. 
Oncologist: I'm pretty certain the cancer hasn't spread to your hang nail.
Anyway, I'm scheduled to follow-up with a CT scan in three months, and of course flush my port in-between, since he thinks I should keep it "indefinitely" until we decide otherwise. 
Meloni

Clarry,
Your mom has stage IV, non-small cell (NSC) Squamous cell, lung cancer (LC).  To your questions:
It is not "totally untreatable."  It can be treated with conventional chemotherapy and that is often successful in extending life.  Moreover, as Susan indicated, there are immunotherapy advances that are just emerging from research that are proving useful in treating Squamous cell NSCLC.  Here is information on Squamous cell LC, and here is information on immunotherapy.  Your mom's age and general health may be complicating factors and her doctors are likely aware of that complication.
Two weeks or longer is not an unusual wait time for a treatment plan.  I'm not familiar with the UK medical system but it took about a month for me to navigate the diagnostic phase of my disease.  After a successful treatment that resulted in "no evidence of disease" (NED), we scheduled an extensive and expensive celebratory vacation.  Shortly before vacation day, a scan showed a recurrence and my oncologist advised we enjoy our trip forecasting no problem with a month delay in addressing the recurrence.  So, I'd say a month to no more than 6 weeks to start treatment is a US norm.  Again, I don't know about the UK medical system, but I don't think "first line standard of care" (the treatment administered to most all stage IV, NSC Squamous cell LC patients) will be hard to arrange.  One exception, however, is complicating medical conditions.
Advice.  Your mom will almost certainly receive chemotherapy as a treatment.  Understand that chemotherapy often extends life.  Help her to enjoy the extension. No one knows how long of an extension lasts.  Many of us were exactly where your mother is and we are still living the extension.  I've found in lung cancer, that persistence is required.  I had four unsuccessful treatments in the course of 3 years until the fifth yielded NED.  I wasted a lot of time fretting during that 3 year period when I could have been living.  Help your mom enjoy life.  
Guidance.  Read into the disease.  Once treatment is administered, there will be side effects to deal with.  Fortunately these are cyclic and will appear about the same time after each infusion.  Help your mom chart the onset of side effects.  My doctors advised starting my nausea medication shortly before the onset of nausea.  I did and I didn't experience nausea.  So, help your mom by creating her "cancer calendar".  Record her treatment days, post treatment scheduled tests (blood work), diagnostics (scans in treatment) and date and time of each side effect presentation.  Cancer treatment is a scheduling exercise.  Help her create and maintain a schedule.
More guidance.  Read steps four through ten.
There are miracles.  These are events where cancer stops growing without medical intervention.  They are rare and unexplainable.  There are no miracle cures so avoid falling into that pitfall.  But hope is not a miracle cure but I believe it essential to successful treatment.  This explains my belief of the importance of hope in lung cancer treatment.
We wish the best for your mother.  You'll likely have future questions and this is a good place to ask them.  And, to reinforce the importance of hope, if I can live, so can your mom.
Stay the course.
Tom

John,
With respect, I disagree.  I've heard and read about people trying to sell "non-conventional", "holistic methods" and the like in my 12 years of surviving this nastiness. I know people who died because they believed enough to try the non conventional.  Re-reading all your posts, it appears you are positioning yourself to peddle unproven methods using this site as a sales platform.
You are saying: "I know for a fact that certain fasts" (classic scam statement), citing "Dr. Valter Longo" (not a medical doctor but a PhD genetics researcher with interest in aging and has two preliminary studies on fasting that he admits are not conclusive) and the "Rife Frequency Generator"(doesn't even work when plugged in) as curative measures.  I'll be frank.  Are you trying to get purchase on this site to offer "non-conventional" or "holistic methods" as a viable means for effective treatment of lung cancer? 
I'm flagging your posts and bringing them to the attention of senior LUNGevity management for review.
Tom

I've known so many who have passed from this horrible disease.  Without exception they were late stage diagnosis, typical of lung cancer.  Moreover, like your experience, chemo was the only available therapy and it wasn't very effective.  I can say these things of the many I've known but none were tied by a bond of love.  To lose the love of one's life to lung cancer and watch the devastation unfold is unfathomable.  I cannot say I know how you feel.  I can try to imagine but that will fall far short. 
 
Yet, despite going through the mayhem of your loss, you return to minister to those who bear the burden of disease.  That is laudable, remarkable and speaks volumes of your heart and character.  Thank you for staying the course.
 
Tom

Karen,
 
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. 
 

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.
 
Mel

Meloni,
 
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.
 
Tom

Chris,
 
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.
 
Tom 

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.
 
Tom

Dagnabit!
 
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.
 
Tom

Meloni,
 
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.
 
Tom 

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).