Jump to content

Susan Cornett

Moderators
  • Posts

    735
  • Joined

  • Last visited

  • Days Won

    85

Posts posted by Susan Cornett

  1. I think we can all agree that chemo stinks.  I had four rounds of cisplatin/pemexetred last year and I'm 3 weeks into 6 weeks of carboplatin/taxol for a recurrence.  Last year, my girlfriends and I decided to have themes for chemo. One session was 80s and the last session was Mardi Gras.  We had beads and boas for everyone.  We're doing the same thing again this year.  We had spring fling, beach fun, and today's pajama party.  For some reason, my husband wants no part of the costume concept!  :-D

    I'm sharing this in the hopes that it will inspire you to find a way to get through chemo with a smile.  If we don't laugh, we cry.  

    17990375_10209720461350776_3587108618652564911_o.jpg

    18156683_10209785267610892_3161395172134007489_o.jpg

  2. Hi Sandra.  I hope you find this forum useful.  Everyone is helpful. We understand where you are. My mindset is to treat lung cancer like a chronic disease with the occasional flare-up.  I was diagnosed in early 2016 during surgery to remove half of my left lung.  We later discovered that the lung cancer had spread to my thyroid, and I also had a separate thyroid cancer.  My treatment for the lung cancer was cisplatin and pemexetred.  I didn't have any treatment for thyroid because they got it all when I had a thyroidectomy.  I was NED for the lung cancer from July to the end of February this year.  I'm in the middle of 6 weeks of radiation and chemo.  Once I wrap this up, I move on and live 90 days at a time between scans.

    Please let us know how we can help you walk this path.

  3. Hi, Patricia. I'm sorry about Jason's diagnosis but glad you found this site. This diagnosis is scary and overwhelming and it just stinks.  I tell people to be sad and scared but move on to anger and use that anger to fuel the fight.  We have a lot of long term late stage survivors here. They give me hope every day.

    What next? Take a deep breath. When family and friends ask what they can do to help, tell them what you need- a meal cooked, laundry folded, whatever it is you need. You and Jason have a new normal and that will mean leaning on others. I had a hard time with that but I'm over it now! Get a journal. Take it to every appointment to take notes. Jot down questions between appointments. 

    You mentioned the possibility of immunotherapy so I presume his team is testing for mutations? There are quite a few members of this forum with genetic mutations who are finding great success with immunotherapy.

    I am a stage IV adenocarcinoma patient. I was diagnosed in early 2016 with mets to my thyroid (which by the way is very rare). My primary and Mets tumors were surgically removed and I underwent chemo. I am currently going through chemo and radiation for a recurrence in my chest.

    Please keep us posted and ask anything.

  4. Because I had the traditional lobectomy, I think my recovery was a little slower.  I was walking in the hospital the day after surgery.  On my first day home, Mom and I walked to the mailbox and over the next week I progressed to walking to the end of the block and back.  It was a struggle, though.  You might want to consider making arrangements to sleep downstairs for at least a few days until you start to really bounce back.  

  5. My words of wisdom are be patient with your recovery.  Whether its VATS or traditional lobectomy, take your time and listen to your body.  Definitely make friends with that danged spirometer.  

    I'm cracking up that you named your tumor "Larry".  I named mine "Norman" and now that I have a recurrence in my lymph node, we've named it "Larry".  If we don't laugh, we'll cry!

    Please keep us posted on your progress and ask if you can think of any more questions. 

  6. Mally,

    I had a CT and a brain MRI before I started chemo last year. I had last treatment in May and my next scan was July 1st, so I didn't have scans during treatment. Doc put me on a 90 day scan schedule.  I had clean scans from August until February of this year. I'm just getting started on a course of radiation and chemo now. To my knowledge, no scans until I finish this course of treatment. Hope this helps.

  7. Hi Suzanne.  I am a stage IV adenocarcinoma patient.  I was diagnosed in February 2016.  I made it 12 months before my first recurrence and my recurrence (as far as a recurrence goes) is minor.  I started treatment today.  Smoker, non-smoker - doesn't matter; lung cancer doesn't discriminate.  I just had my second brain MRI and that is the one that scares me, but my oncologist says the medical field is having great success with brain radiation. That said, fingers are crossed and prayers said for clean scans so you can move forward with treatment.

     

  8. Good morning.  I just wanted to say thank you to all who participate in this forum, whether it's a post, a response, or silent prayers and good thoughts from your home.  I sign on every day to read how others are doing, and to see if I might share experiences to help others.  This sight became my lifeline last spring and it's through this site that I discovered that a recurrence is not the end of the world, but merely a bump in the road.  I think of you all every day, send prayers, and cross fingers and toes for good results.  

    Thank you!

  9. Hi.  I'm stage IV NSCLC and I had four courses of cisplatin and alimta last spring.  My side effects were fatigue, nausea, neuropathy, and ringing in the ears.  My nausea was well managed with Prilosec and two prescription meds (Zofran, Compazine).  The fatigue hit me around the end of April and stuck with me into June.  The neuropathy finally subsided in the fall and the ringing in the ears is the gift that continues to give.  I did not lose my hair but it is my understanding that many people lose their hair with that combo.  My chemo also lasted nearly 8 hours each session due to the combination of drugs and fluids.  

    I was NED until the end of February this year when we found a recurrence in a lymph node in my chest, so I'd say that almost a year of NED is pretty good for stage IV.  I start 6 weeks of radiation and chemo (carboplatin and taxol) next week.

    I'm sure your team has provided you with information about the drugs and side effects, but I also recommend chemocare.com.  I have found that site to be very useful.  I hope I answered your question, but if not, please let me know.  Good luck to you!

  10. Hi Brenda.  I would ask how you are, but I know.  We all know.  That diagnosis will absolutely take you to your knees. But you will find members of this forum who are long term survivors of this crummy disease.  Do you know when you will get your PET results? Do you have a referral to an oncologist?  At the beginning, there are so many moving parts that it is easy to get overwhelmed.  Do you have someone who can attend appointments with you?  I found it better to have a second set of ears, in addition to the notes I took.  Let us know how we can help you.  

  11. Good morning, Carl.  Sorry about your diagnosis but glad you are here.  There are so many long term survivors on here - they are full of great information, experience, and perspective.  The cancer diagnosis is overwhelming and scary but all of us have been in your shoes.  If you'd like to share any details (staging, type, treatment plans), we'd love to hear from you and we might be able to offer some information.  Please let us know how we can help you navigate the lung cancer world.

  12. I wish I had information to offer you, but I don't.  My grandmother had SCLC that went to her brain, but she died very quickly after that was found.  Please know that I'm thinking about you and your family and am hopeful that you will get some answers soon.  

  13. Good morning, Judy.  You and I are walking a similar path for lung cancer.  I was diagnosed with stage IV adenocarcinoma last spring after a lobectomy.  I followed with four rounds of cisplatin/alimta.  Regular screening just found a recurrence in a lymph node in my chest, so I'm preparing to start 6 weeks of concurrent radiation and chemo (carboplatin/taxol). I'm told the chemo won't be as rough as it was last year.  

    Please keep us posted on your progress.  

  14. Good morning.  Do you feel comfortable discussing your mother-in-law's treatment plan?  There are so many different options with chemo, injections, radiation, etc., and we all react differently.  In my case, I had surgery to remove my primary tumor, followed by four rounds of cisplatin and alimta.  My side effects were manageable - nausea, fatigue, neuropathy, and ringing in the ears.  The only one that still lingers almost a year later is the ringing in the ears.  Depending on the course of treatment, your mother-in-law's physician may request a scan during treatment to check progress but may also wait until after treatment.  Frequent scans (i.e., every 90 days or so) will likely become a way of life.  

    I hope that you find this forum useful.  It has been a great resource for me.  Please keep us posted.

  15. Good morning.  Staging for lung cancer is based on the size of the main tumor, whether it has spread to nearby lymph nodes, and whether it has metastasized to other organs or bones.  Based on the move to the ribs and shoulder, stage IV sounds right.  That said, please don't get too caught up in staging numbers.  There are so many late stage survivors on this site.  With respect to the statistics, your oncologist is absolutely right.  Those numbers are an aggregate of many factors and don't consider an individual patient's age, health, treatment options, etc.  We've had several new treatment options in the last few years and people are living longer with this disease.  My mindset is to treat it like a chronic illness and expect a "flare-up" (recurrence) from time to time.

    Second opinions can be very helpful, and if you feel like it is warranted, trust your instinct and get one.  I haven't pursued a second opinion because I'm very happy with my current team.  If we reach a stage where my oncologist throws his hands up because he's out of ideas or options, then I'll go for another opinion.

    We all know how overwhelming this is.  There is nothing about this that doesn't stink. For me, I just have to keep moving forward.  A positive mindset and my faith keep me going.  Please keep us posted. 

     

  16. Welcome, Denise.  I'm sorry about your diagnosis but it sounds like it was caught quite early which is wonderful.  I have found this forum and its members to be incredibly helpful.  Please keep us posted on your progress.  

    I see you're from NW Florida - anywhere near Fort Walton? 

  17. I had four rounds of the cisplatin/pemexetred starting in March 2016 and ending in May 2016.  Starting next week, I'll have 6-7 rounds of carboplatin and taxol for a recurrence in my lymph nodes.  I'll also have 6-7 weeks of radiation.  

    Keep us posted on your progress.  Please be careful when flying - when I traveled for work, I almost always caught something and now is not the time for you to catch a cold!!

  18. Hi, Cindy. My primary tumor was in my upper left lung, but we didn't know it was cancer until after surgery.  The goal was just to remove the mass.  My metastatic tumor was on my thyroid, which is apparently quite rare. I also had a second cancerous (papillary) tumor on my thyroid.

  19. I had a pet scan yesterday as a follow-up to my CT in February.  As suspected, a lymph node near the aortic arch lit up.  But nothing else lit up so that's reason enough to do a happy dance.  I'll have a surgical biopsy to confirm it is adeno (same as primary tumor removed last year) and I will have a port put in.  I have 6-7 weeks of concurrent chemo (carboplatin and taxol) and radiation and I am not about to endure that without a port.  Doc will also send me for an MRI just to confirm the brain is still clear.

    Doc knows I have a trip planned for Hawaii at the end of May so he's trying to get this started so I can finish in time to take my trip.  I will probably feel pretty crappy by then, but I'd rather feel crappy sitting on a beach.  

    I was a little sad on Saturday - I presumed the misbehaving lymph node was cancer.  I was a little sad today and then mad, but now?  Let's get this fight started.  I've already had 13 months since my initial diagnosis and that's pretty damn good.  I'm ready.  

     

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.