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Deb W

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  1. Like
    Deb W got a reaction from LouT in Spinal MRI last week   
    Great news!
     
  2. Like
    Deb W got a reaction from GaryG in Spinal MRI last week   
    Great news!
     
  3. Like
    Deb W got a reaction from LexieCat in Spinal MRI last week   
    Great news!
     
  4. 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! 
  5. 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.
  6. Like
    Deb W reacted to Rower Michelle in Good news (scans/doc) today!   
    Onward! 
  7. 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!).
  8. 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!  
  9. 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,
    Steff
  10. Like
    Deb W reacted to LouT in Keytruda - Every 6 weeks?   
    Deb,
    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.
    Lou
  11. 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.
    Deb
  12. 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.
    Deb
  13. Like
    Deb W got a reaction from LouT in Keytruda - Every 6 weeks?   
    Hi friends,
    My oncologist told me  today that if my next scan (in 3 weeks) is still clear I can take Keytruda every 6 weeks (double dose) in stead of every 3 weeks.  I experience some  side effects - a lot of fatigue (I can manage) and some nausea.  When I asked what a double dose might feel like he said it won't be any different.  I asked him if there was any research on how people were doing getting Keytruda 1 time every 6 weeks vs. 1 time every 3 weeks.  I sort of think that a double dose might cause worse side effects.  The 6 week regimen is a newer protocol and I asked him if he had other patients on the 6 week regimen, he said that he had 5 patients and none reported a problem....but he also said it is a rather small number.  Part of me thinks if the FDA approved the 6 week treatment It should be o.k.  If you've had this regimen, were your side effects any worse than having it every 3 weeks?
    Deb
  14. Like
    Deb W got a reaction from GaryG 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.
    Deb
  15. Like
    Deb W got a reaction from JamesB 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.
    Deb
  16. Like
    Deb W got a reaction from JamesB in Keytruda - Every 6 weeks?   
    Hi friends,
    My oncologist told me  today that if my next scan (in 3 weeks) is still clear I can take Keytruda every 6 weeks (double dose) in stead of every 3 weeks.  I experience some  side effects - a lot of fatigue (I can manage) and some nausea.  When I asked what a double dose might feel like he said it won't be any different.  I asked him if there was any research on how people were doing getting Keytruda 1 time every 6 weeks vs. 1 time every 3 weeks.  I sort of think that a double dose might cause worse side effects.  The 6 week regimen is a newer protocol and I asked him if he had other patients on the 6 week regimen, he said that he had 5 patients and none reported a problem....but he also said it is a rather small number.  Part of me thinks if the FDA approved the 6 week treatment It should be o.k.  If you've had this regimen, were your side effects any worse than having it every 3 weeks?
    Deb
  17. Like
    Deb W got a reaction from Tom Galli 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.
    Deb
  18. Like
    Deb W got a reaction from LexieCat 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.
    Deb
  19. Like
    Deb W got a reaction from Rower Michelle 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.
    Deb
  20. Thanks
    Deb W got a reaction from GaryG 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.
    Deb
  21. Like
    Deb W got a reaction from Rower Michelle in Recurrence   
    I had a recurrence after the lobectomy.  My treatment was 4 rounds of Carboplatin/Alimta/Keytruda.  After that the Carboplatin was dropped I was put on maintenance of Alimta and Keytruda.  The plan was to keep me on Alimta and Keytruda until February 2020 and then drop the Alimta.  I made it until the end of October -   the fatigue was too much and so I asked my Oncologist if I could take a break from the Alimta.  He said yes, and didn't think it would matter.  So, the last 2 treatments were Keytruda only and I feel like a different person - it's like someone turned the lights back on.  I still have fatigue, but it's more toward the end of the day.  I will have a scan at the end of December.  My  next treatment is Tuesday and I'm not sure if he's going to add the Alimta back.  I will go with whatever he recommends because I trust his judgement.  He's a researcher and very up on the latest in lung cancer research and treatment.  He could benefit from  some skill development as a clinician, but sometimes we just don't get it all with an oncologist.
    Deb
  22. Like
    Deb W got a reaction from GaryG in Recurrence   
    I had a recurrence after the lobectomy.  My treatment was 4 rounds of Carboplatin/Alimta/Keytruda.  After that the Carboplatin was dropped I was put on maintenance of Alimta and Keytruda.  The plan was to keep me on Alimta and Keytruda until February 2020 and then drop the Alimta.  I made it until the end of October -   the fatigue was too much and so I asked my Oncologist if I could take a break from the Alimta.  He said yes, and didn't think it would matter.  So, the last 2 treatments were Keytruda only and I feel like a different person - it's like someone turned the lights back on.  I still have fatigue, but it's more toward the end of the day.  I will have a scan at the end of December.  My  next treatment is Tuesday and I'm not sure if he's going to add the Alimta back.  I will go with whatever he recommends because I trust his judgement.  He's a researcher and very up on the latest in lung cancer research and treatment.  He could benefit from  some skill development as a clinician, but sometimes we just don't get it all with an oncologist.
    Deb
  23. Like
    Deb W reacted to GaryG in Sudden, inexplicable back pain   
    It looks like there is no easy way out and hurdles appear when you least expect them. I am scheduled for a visit with a thyroid specialist tomorrow because the radiologist thinks one of them is cancerous. I was doing so well with the triplet and now this.
    Well this is not the time for all of us to get discouraged. We need to get into a new gear and plow ahead. I wish you ladies quick recovery and return to normal. 
     
  24. 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. 
    Deb 
  25. Like
    Deb W got a reaction from GaryG 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. 
    Deb 
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