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Meloni

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  1. Like
    Meloni reacted to BridgetO in Terrified newbie with questions   
    Hi Lbelle,
    Wow! You're getting great advice from everybody! I agree that it's important to be your own advocate. Ask lots of questions (including who can see you sooner) and ask for copies of test results. Some doctors assume we won't understand technical stuff, and sometimes I don't, but with the internet I can find out a lot. Information is your friend. Get as much as you can. If you can get someone to go with you to appointments, great! Make  a list of questions. Have your support person take notes.
    Hang in there! Lung cancer is my 3rd primary cancer and I'm hanging in there and living a good life. You can too.
  2. Like
    Meloni reacted to CIndy0121 in Terrified newbie with questions   
    I agree that your PCP is your health care advocate and should be able to expedite your diagnosis with the appropriate specialists. This is just my experience and my observations from posts by many other patients. I would go as directly as possible to the needle biopsy by an interventional radiologist. Of course, bronchoscope and needle biopsy do both depend to some extent on the location of the tissue to be sampled. I cannot tell you how many times I have read that someone's bronchoscopy reported either "inconclusive" or "no malignant cells". Mine was Sept. 30, but my final diagnosis by needle biopsies of both lungs wasn't made until Jan. and Feb. (stage IV).  It will ease your mind if it is negative, but if it is positive, you will still need to get to a medical/lung oncologist and complete the staging process. The scheduling and appointments is overwhelming on top of the devastating emotions and thoughts about the possibilities. We admit that it is difficult; we can say that because we have been there. We all hope and pray for the best possible outcome for you. The best advice you will get (and you will get it repeatedly) is that you have to be a proactive self-advocate. Please let us know if you make any progress next week.
    cindy
  3. Like
    Meloni reacted to Tom Galli in Terrified newbie with questions   
    Lbelle,
    Cindy is exactly correct to point out a needle biopsy performed by an interventional radiologist.  This specialist may be the easiest and best way to get confirmation about your mass.  Further, she's right about the downside of bronchoscope procedures.  My first could not obtain a biopsy sample.
    I had an interventional radiologist re-install a chest tube that fell out of my back. Actually two were involved in the procedure and they used a fluoroscope to determine where to make the new incision.  It was performed with a local anesthetic and was a piece of cake.
    The good thing about interventional radiologists is most medium to large hospitals have them and they are readily available.  Your oncologist ought to be able to arrange a consultation.
    Stay the course.
    Tom
  4. Like
    Meloni got a reaction from Susan Cornett in Recurrence & Treatment Update   
    We met with my oncologist yesterday to discuss the recurrence of NSCLC in my right supraclavicular lymph node. The thoracic surgeon who performed my lobectomy agreed to perform this surgery, and I'm scheduled to consult with him on March 9th. 
    The results are back on the tumor testing. It tested positive for ALK. The oncologist talked a bit about the drug crizotinib as a possible future treatment. 
  5. Like
    Meloni got a reaction from Mally in Recurrence & Treatment Update   
    We met with my oncologist yesterday to discuss the recurrence of NSCLC in my right supraclavicular lymph node. The thoracic surgeon who performed my lobectomy agreed to perform this surgery, and I'm scheduled to consult with him on March 9th. 
    The results are back on the tumor testing. It tested positive for ALK. The oncologist talked a bit about the drug crizotinib as a possible future treatment. 
  6. Like
    Meloni got a reaction from Melissa Blevins in Terrified newbie with questions   
    I agree with the others about getting seen sooner. I was diagnosed last year at age 40, and like you an atypical demographic for lung cancer. I got the run around a few times before finding a wonderful pulmonologist who scheduled me in the following day. Don't let the front desk schedulers put you off. Many don't know the difference between routine and priority needs. Make sure you speak with the doctor's nurse. Tom's idea of having your PCM advocate for you can be helpful as well. Also, how many pulmonologists are in your coverage area? 
    Please follow up. I hope to from you soon. <3 
  7. Like
    Meloni reacted to ngc4au in Update...Praying for NED   
    Update on my father...yesterday (Feb. 21) was his last chemo treatment with 7 radiation treatments to go!!!  I heard a recording of the radiation oncologist meeting and he said his lungs sounded clear (fingers crossed)!!  When he got home he ATE!!!  He has been unable to eat very much at all...he kept a small glass of baking soda water and took tiny sips to eat any food.  His follow up CT scan is scheduled for April 3rd and I am praying for NED!!!  He was not a candidate for surgery, so, I know that is probably our best hope and it is mine.  I haven't seen my father in at least two weeks.  I am a guidance counselor with a 9 year old and the FLU is terrible here.  We are both (me and son) terrified of bringing a germ to him.  I am hoping we will get to see him this weekend.  My sons has a runny nose and slight cough...so, we may wait a few more days.  It is so difficult.  I am so nervous and optimistic about him feeling better.   He was so physically strong and enjoying working outside before.  My mother said yesterday it will just make her day if he feels like going outside and sitting on the porch.  It is truly the little things. 
    Praying for NED!!!
  8. Like
    Meloni reacted to Susan Cornett in Mixed bag   
    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!
  9. Like
    Meloni got a reaction from RuthieThomas in Scan results - POST HERE!   
    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
  10. Like
    Meloni reacted to Tom Galli in Scan results - POST HERE!   
    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
  11. Like
    Meloni got a reaction from Tom Galli in Scared!   
    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
  12. Like
    Meloni got a reaction from Fred G in IV'e Got Veins, Maybe   
    This thread needs to be reactivated, especially for the new people coming on. 
    If you or your loved one has recently been diagnosed, ask about a port for chemo! It's been such a godsend for me. I've only had four chemo sessions to date, and my oncologist recommended I keep my port "indefinitely" for now, in the event we need to do more in the future (lo and behold, this may be happening soon). I hardly notice its presence, and the only maintenance it requires is a flush every 4-6 weeks. 
    My port has been used my port for chemo sessions and for the in-between hydration sessions. So much better than a stupid IV. I still get vein stuck for contrast imaging and outpatient blood draws. Also, if I go to the hospital, and somebody isn't port trained or seems fishy with their training, I don't let them touch it. Use your best judgment on that.  
  13. Like
    Meloni reacted to Tom Galli in Giving hope a chance?   
    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
     
  14. Like
    Meloni reacted to Jg_miller in Ct scan, where can I get feedback/posted 3 times   
    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?
  15. Like
    Meloni reacted to RuthieThomas in Dealing with it all   
    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
     
  16. Like
    Meloni reacted to Paulak64 in Hi, I'm Paula   
    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.
  17. Like
    Meloni reacted to LaurenH in Scan results - POST HERE!   
    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
  18. Like
    Meloni reacted to Tom Galli in Scan results - POST HERE!   
    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
  19. Like
    Meloni reacted to Tom Galli in Scan results - POST HERE!   
    Meloni,
    So hoping the biopsy is negative.  Let us know the news.
    Stay the course.
    Tom
  20. Like
    Meloni reacted to LaurenH in Scan results - POST HERE!   
    That's wonderful news, Meloni! I'm so happy to hear it!
    Lauren
    --
    Digital Community Manager
    LUNGevity Foundation
  21. Like
    Meloni got a reaction from Susan Cornett in Scan results - POST HERE!   
    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
  22. Like
    Meloni got a reaction from LaurenH in Scan results - POST HERE!   
    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
  23. Like
    Meloni reacted to Tom Galli in Mum has Lung Cancer...Help please   
    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
  24. Like
    Meloni reacted to Tom Galli in Has Anyone Used/Combined Holistic Methods with Conventional?   
    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
  25. Like
    Meloni reacted to Tom Galli in My journal   
    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
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