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Deb W

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  1. Like
    Deb W reacted to Robert A. in It's been awhile update.   
    Hello group, hope all is well with your treatments during this pandemic. I last posted in September after my wife's 1st scan after being on Tabrecta for 3 months which showed her tumor had shrunk more than 1/2. It's been another 3 months on the same treatment so we went for a scan last Thursday with a Dr. follow up the 31st. The treatment has gone rather easy with the only side effect being swollen feet on occasion. The Dr. prescribed a water pill to take when needed. This medication has been so much easier because she can take it at home 2 pills in the morning and 2 pills in the evening. He's hoping that the Trabecta is still doing it's thing and will post the results in the New Year. I hope all of you have a safe and Happy Holiday and may the New Year bring us new treatments.  Robert & Vera
  2. Like
    Deb W reacted to Tom Galli in Wife Diagnosed w/ LS-SCLC stage 3   
    Thank you for your courage to persevere and for your forthright commentary on this sad episode. Your insight into this difficult time will help many. I pray for peace for both of you.
    Stay the course.
  3. Like
    Deb W reacted to GaryG in Wife Diagnosed w/ LS-SCLC stage 3   
    Hi Steve: You bring back so many painful memories of watching the suffering of a person you love while not making any sense of it all and asking why does it have to be like this?   At one point you just feel weightless, mindless and powerless but you still hang in to a faint hope that never comes.
    I remember going on guilt trips for not having the knowledge to help and learned that dealing with reality is difficult to learn. 
    If it's any consolation to you, I assure you that one day you will look back and realize that you did the best you could and be proud that you were there for your wife every step of the way.
    She is in good hands with Hospice and that should give you a piece of mind. We are also here for you, as family and friends,  thinking and praying for you and sending you love.  I wish you the best my friend.
  4. Like
    Deb W reacted to LexieCat in Wife Diagnosed w/ LS-SCLC stage 3   
    We are all thinking of both of you and sending you strength and peace. I went through this with my mom in the hospital--I'm glad your wife can be at home in familiar, comforting surroundings. 
    You're a great partner--I know how much this hurts but you're doing great.
    Hugs to you both.
  5. Like
    Deb W reacted to TJM in Wife Diagnosed w/ LS-SCLC stage 3   
    Please continue posting if you can. 
    We all have an expiration date...just us lungers have a bit more clarity.  Be there for her. Talk. Comfort. Do the best you can. You dont need me to tell you this.
    My brother passed from lung cancer at a very young age, with me at his side.
  6. Like
    Deb W reacted to Rower Michelle in Wife Diagnosed w/ LS-SCLC stage 3   
    We love you and will continue to keep you & the family in our prayers.   
  7. Like
    Deb W reacted to BridgetO in Wife Diagnosed w/ LS-SCLC stage 3   
    Hi Steve,  I'll be thinking of you during this difficult time,  It's good that you're hanging in there by your wife's side as her caregiver while things are so hard. I hope that your wife can be pain-free and at peace and that you can be, also, as much as possible. 
    Bridget O
  8. Sad
    Deb W reacted to MyWifeSCLC in Wife Diagnosed w/ LS-SCLC stage 3   
    Update: 3 months in hospice now.
    For a couple of weeks now, bowel movements have been difficult even though on stool softeners and no indication of constipation. Nurse is giving enemas and ... removing with fingers ... That was awful for both of us and perhaps a last straw for her. Pee has been dark also. Her apetite began failing and no longer drinking much. Been sleeping more and more and also more back pain and headaches. Nurse decided to come 3 days a week instead of 2 last Thu. I'm sure she suspected something now.
    Got up yesterday and she was just not feeling good and wanted Oxycodone and Tylenol for back pain which relaxed her somewhat. Also gave her Lorazepam which she also began taking a couple of weeks ago for anxiousness. Nurse got there and found heart rate in the 150s for 1st time in hospice with BP 90 something over 50 something. She had started coughing Monday afternoon just after the nurse had left. No indication on Monday that anything was wrong. I had missed her breathing being labored. The nurse asked for the "special package" sent when hospice started. Morphine to help with breathing ... I've read enough to know the symptoms but still a freaking shock. Nurse had just a few weeks ago thought maybe a couple of more months.  She told me a few weeks now and that her body was shutting down
    Sucks doesn't even cut it ... I cried like a baby (not around her). It's obvious that I'm one of those that has to be knocked upside the face to come to terms with this ... anyway it's all about keeping her comfortable and she's pretty much zonked out.
    I'll keep posting ... As I have mentioned before perhaps this will help someone else when the time comes.
    P.S. I guess the docs know what they know .. 2 to 4 months was what they said when she was sent home.
  9. Like
    Deb W got a reaction from LouT in Scan day   
    That's fantastic, Bridget!  I'm so happy for you.
  10. Thanks
    Deb W got a reaction from BridgetO in Scan day   
    That's fantastic, Bridget!  I'm so happy for you.
  11. Haha
    Deb W reacted to Rower Michelle in Spinal MRI last week   
    Ha, don’t trust me to do any happy dances either!  I successfully washed out of every sport with a ball & rules before junior high school with a trail of emergency room visits resulting in an interview from child protective services for being so accident prone!  I stick to rowing cause it’s a sitting down sport with idiot proof repetitive motion.  
    I hear by delegate the happy dances to @Deb W who knows the way around the tennis courts!!! 🤪
  12. Like
    Deb W got a reaction from catlady91 in Recurrence   
    I had stage 1B and had a ULL lobectomy in 3/19.  In 4/2020 I was told I had  Stage 4 and  it was a  recurrence , and they believe I had micro metastasis which couldn't be seen on the CT or PET during my follow-up scans  after surgery so they determined it was the same cancer.  Additionally, there was a new small nodule and endoscopy showed positive for adenocarcinoma in two lymph nodes and the left hilar mediastinal area.  Although the oncologist said it was a very small amount of cancer, it was still staged at 4.  I am happy to report that I've been in remission since August. 
  13. Like
    Deb W got a reaction from LouT in Sudden, inexplicable back pain   
    Sending good vibes your way - hoping for good results on you scan.👼
  14. Like
    Deb W got a reaction from LouT in Spinal MRI last week   
    Great news!
  15. Like
    Deb W got a reaction from GaryG in Spinal MRI last week   
    Great news!
  16. Like
    Deb W got a reaction from LexieCat in Spinal MRI last week   
    Great news!
  17. Like
    Deb W reacted to Rower Michelle in Spinal MRI last week   
    Just don't do a happy dance!  Leave that to us to do for you!   It seems to me in the first year of a Stage IV lung cancer diagnosis, many people have two off cycle scans for something (for me it was a spinal and brain MRI), so one way to look at this is you're halfway there!  The bumps in the road settle down after the first year.  Very great news to wake up to on a Monday! 
  18. Sad
    Deb W reacted to TNChuck in Sadness yet......   
    I've written a couple of post on here about my mother with Stage IV cancer and unfortunately last night she passed. She was going through chemo and needed oxygen and up until a couple of days ago she was relatively fine, but she went downhill fast. She had trouble breathing but said she wasn't in pain but then convulsed and died before medics could get to the house. She was in and out since she took morphine palliative care gave her but in her lucid moments she did tell us she loved us. I'm devastated she's gone with all we had planned but also relieved she's in no more pain from the cancer or the chemo. Just needed to write this down that yes Cynthia, you will be missed as a wife, mother, friend, nurse and a good-hearted person.
  19. Like
    Deb W reacted to Rower Michelle in Good news (scans/doc) today!   
  20. Like
    Deb W reacted to LexieCat in Good news (scans/doc) today!   
    So my latest scans were, as the doc put it, as good as one could hope for. "Completely stable." I asked for clarification--whether that's the same as NED. He said, essentially, yes. There are still a few small nodules, where they have been all along. No enlarged lymph nodes. The unhealed clavicle fracture COULD be indicative of an undetected bone met but was of no concern due to the terrific response elsewhere. So bottom line is that, in context, there is nothing that indicates any active cancer.
    Thus, today I started on the Alimta/Keytruda maintenance therapy. Same dosage/schedule as before. Since they eliminated the Carboplatin, they also eliminated the EMEND (anti-nausea infusion). Altogether, cut the infusion time just about in half, which is terrific, too. I confirmed that this therapy will continue "indefinitely." He said yes, with a caveat that they will re-evaluate whether to continue the Keytruda after two years. He said the Alimta would continue indefinitely, till something changes. That kinda surprised me, as I know most people here seem to drop the Alimta before the Keytuda.
    He moved up my back MRI (back still feeling OK ATM) to tomorrow from next week--he didn't want it to wait that long. Which I guess is a good thing, just wondering if he's concerned about bone mets. I'll ask him to call me as soon as he's seen the results. 
    I had my scan reports printed out and missed a couple things I wanted to ask about since I saw the doc--I'll send him a note to ask. One is that the scan reports talk only about the nodules in my left lung--this time the primary tumor was in the right lung. Oddly, one finding talks about a "cluster of sub centimeter nodules in the left upper lobe"--that's the lobe that was removed! The one thing it says about the right lung is "Band-shaped opacities in the perihilar right lower have not significantly changed." Does that mean the tumor identified on the right is gone? I also wanted to ask if the scan schedule will continue as it has been, with every other visit/infusion. Right now, I don't want them spread too far out from each other. 
    I really do love my doctor. I embarrassed myself momentarily reaching out to shake his hand, and he kindly reminded me not to touch. We did an "air elbow bump" instead. But really, I love the way he talks to me, explains things, and gets me whatever I need ASAP. I'm SO glad I chose him--this is Dr. Bauml, who was so impressive in his presentation for the Lungevity survivors' conference this year (which I didn't know at the time I met him!).
  21. Like
    Deb W reacted to Steff in 5 years later...   
    Thank you, my friends!  One day I will be less busy working and caring for my mom that I will be able to join in the conversation again!  
  22. Like
    Deb W reacted to Steff in 5 years later...   
    Hi friends.  I had planned to post yesterday, but the day got away from me, so here is the BIG news...
    My mom celebrated her 5 year lung cancerversary yesterday!!!  5 years to the day that she was diagnosed with NSCLC adenocarcinoma, stage 3a.  At the time of her diagnosis, she had less than a 25% chance of living to see yesterday.  Unfortunately she spent the day in the clinic, receiving fancy purple chemo for her recently diagnosed leukemia, so we held our celebration a few days early.
    During my mom's first treatment for lung cancer, she had chemo once per week, on Fridays.  I would take her to chemo every week.  We would sit together and then go to a local tea shop for a cup of tea.  I decided to continue our tradition and hold my version of high tea - with tea sandwiches, homemade scones, and cookies. And of course tea!  It was a nice surprise for her!
    Take Care,
  23. Like
    Deb W reacted to LouT in Keytruda - Every 6 weeks?   
    I'm always so lost in conversations about chemo because I have no personal experience, but I'm glad you are questioning this.  Based on what Michelle reported it would be worth checking in again with your doctor.
  24. Like
    Deb W got a reaction from LouT in Keytruda - Every 6 weeks?   
    Michelle - Thanks so much for that info.  It just didn't make sense to me that doubling the dose would feel the same way - I mean it has to be harder on the body.  Such a good point on the reimbursement - I wonder too.  I was even thinking about keeping the 3 week schedule and having the infusion at one of their locations closer to home.  My oncologist said that if I keep the 3 week schedule, I would only need to see him every 6 weeks.   I don't exactly like enjoy my visits with the oncologist.  I just open my notes and ask him all the questions I need answered and then it's finished.  
    Thanks so much for your input.
  25. Like
    Deb W got a reaction from LouT in Keytruda - Every 6 weeks?   
    Hi Gary,
    I had 4 rounds of Alimta and Keytruda.  Originally he said I would finish the Alimta in October (which it turned out to be 10-13) and then he changed it and said I would keep the Alimta until February.  Maybe it was the tumor board that said it would be better to have me on it longer, but I began to have some problems with fatigue...it felt like I hit a wall.  I took a 2 week break from treatment and at the next visit he dropped the Alimta.  I felt like someone turned the lights on after the Alimta was dropped.   Today I only had Keytruda.  So this is the 2nd round with Keytruda only.  I think if I didn't have the side effects I would have had the Alimta for 8 rounds.  Now if the next scan shows anything new, I think the plan will be for me to go back on Alimta for sure.  I have had two clear scans.    There is density near a lymph node, but he said that is always going to be there and he's not at all worried about it. 
    I hope it works as well for you as it did for me...also hope this information helps.  I think I'll always have thoughts of another recurrence, but I'm not going to let it interfere with living my life.  The are lots of people living with chronic conditions and have learned they can't worry so much or the quality of life is not would it could be.  I think of it as self discipline with my thoughts....most of the time it works.
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