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Steff

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  1. Like
    Steff got a reaction from TJM in My dad was diagnosed with Stage IIIC NSCLC in September   
    Hi Ellen,
    I'm sorry I am a bit late with my reply...your post resonated with me on many levels.  One of the questions you asked was: I just want to know if there’s hope that this will all pay off for him?  -my answer is - I don't know.  But I do know that without any treatment, the outcome probably isn't good.  From the past 5 years of caregiving for my mom with her original lung cancer diagnosis, a lung cancer recurrence, and now leukemia, I have had many of your same questions and concerns.
    When my mom was diagnosed with her lung cancer recurrence (NSCLC), her treatment plan included Keytruda + Alimta + Carbo.  She had a rough go with it.  In August of 2017, she spent 2 weeks in the hospital with pneumonia, infection, C-Diff, and fluid on the lung.  There were times that I thought I wouldn't be taking her home.  Despite having a chest tube, fluid continued to build up and her breathing was labored.  It was very scary, but she pulled through.  Your dad can too.
    During the nearly 2 years of Chemo + Keytruda (only the first 6 months with chemo, the rest with Keytruda alone) she had to take pauses between treatments because of the side effects.  If I recall correctly, her longest pause was 3 months - due to pneumonitis.  It's not uncommon to need to take pauses in cancer treatment.  In my mom's case, these pauses did not have a negative effect on her treatment outcome - she still continues to show no evidence of lung cancer.  While I understand that your dad's docs do not want to continue with Keytruda right now, if I were you, I would discuss the possibility of trying it again once he fully recovers.  None of the side effects that you are reporting necessarily points to Keytruda side effects.  His hip pain may or may not be related, especially if he had hip pain before Keytruda.  If his docs do not want to continue with Keytruda, I would request specific reasons why.  I am saying this because Keytruda can have very positive results.  Because Keytruda is a new treatment within the past 5 or so years, docs sometimes want to blame everything on it because they don't have as much experience with it as chemo.
    I can tell you that my mom did have to permanently stop Keytruda due to severe side effects - after about 18 months of taking it.  She ultimately stopped because she had severe lower GI inflammation.  Since she had been NED for over 1 year, her docs decided to stop treatment and see what happens.  Thankfully, her lung cancer has stayed away and she celebrated her 5 year lung cancerversary in December 2020.
    I wish I had a crystal ball to tell you what to expect with your dad.  I can say that the bad times got better with my mom and were luckily just a bump in the road.  I am hoping that this is just a bump in the road for your dad.  I'm not sure if you or other family are allowed to be with your dad while in the hospital (our hospitals are closed to visitors), but your dad really needs an advocate to make sure he is getting the he deserves and is paying for.  Some one needs to be his voice and demand top notch care.  During my mom's last hospital stay, over Christmas, she was not able to have visitors due to high COVID numbers in the community.  She was in the hospital for 3 weeks and she often had to wait over 20 minutes for a nurse to come and allow her to use the bathroom.  The excuse was they were overrun with COVID patients and short staffed on the Oncology floor.  She was taken off meds she shouldn't have been.  Without my advocacy and watching over her, she was out of her mind on Oxycontin that they were giving her for a headache!!  It took 4 days for me to make them take her off of the Oxy and give her something else for the headache.  My point is that now more than ever, we need to advocate for decent care for our loved ones.
    Sorry for my long post, my point of it is to hang onto hope.  
    Take care,
    Steff
  2. Like
    Steff got a reaction from LouT in My dad was diagnosed with Stage IIIC NSCLC in September   
    Hi Ellen,
    I'm sorry I am a bit late with my reply...your post resonated with me on many levels.  One of the questions you asked was: I just want to know if there’s hope that this will all pay off for him?  -my answer is - I don't know.  But I do know that without any treatment, the outcome probably isn't good.  From the past 5 years of caregiving for my mom with her original lung cancer diagnosis, a lung cancer recurrence, and now leukemia, I have had many of your same questions and concerns.
    When my mom was diagnosed with her lung cancer recurrence (NSCLC), her treatment plan included Keytruda + Alimta + Carbo.  She had a rough go with it.  In August of 2017, she spent 2 weeks in the hospital with pneumonia, infection, C-Diff, and fluid on the lung.  There were times that I thought I wouldn't be taking her home.  Despite having a chest tube, fluid continued to build up and her breathing was labored.  It was very scary, but she pulled through.  Your dad can too.
    During the nearly 2 years of Chemo + Keytruda (only the first 6 months with chemo, the rest with Keytruda alone) she had to take pauses between treatments because of the side effects.  If I recall correctly, her longest pause was 3 months - due to pneumonitis.  It's not uncommon to need to take pauses in cancer treatment.  In my mom's case, these pauses did not have a negative effect on her treatment outcome - she still continues to show no evidence of lung cancer.  While I understand that your dad's docs do not want to continue with Keytruda right now, if I were you, I would discuss the possibility of trying it again once he fully recovers.  None of the side effects that you are reporting necessarily points to Keytruda side effects.  His hip pain may or may not be related, especially if he had hip pain before Keytruda.  If his docs do not want to continue with Keytruda, I would request specific reasons why.  I am saying this because Keytruda can have very positive results.  Because Keytruda is a new treatment within the past 5 or so years, docs sometimes want to blame everything on it because they don't have as much experience with it as chemo.
    I can tell you that my mom did have to permanently stop Keytruda due to severe side effects - after about 18 months of taking it.  She ultimately stopped because she had severe lower GI inflammation.  Since she had been NED for over 1 year, her docs decided to stop treatment and see what happens.  Thankfully, her lung cancer has stayed away and she celebrated her 5 year lung cancerversary in December 2020.
    I wish I had a crystal ball to tell you what to expect with your dad.  I can say that the bad times got better with my mom and were luckily just a bump in the road.  I am hoping that this is just a bump in the road for your dad.  I'm not sure if you or other family are allowed to be with your dad while in the hospital (our hospitals are closed to visitors), but your dad really needs an advocate to make sure he is getting the he deserves and is paying for.  Some one needs to be his voice and demand top notch care.  During my mom's last hospital stay, over Christmas, she was not able to have visitors due to high COVID numbers in the community.  She was in the hospital for 3 weeks and she often had to wait over 20 minutes for a nurse to come and allow her to use the bathroom.  The excuse was they were overrun with COVID patients and short staffed on the Oncology floor.  She was taken off meds she shouldn't have been.  Without my advocacy and watching over her, she was out of her mind on Oxycontin that they were giving her for a headache!!  It took 4 days for me to make them take her off of the Oxy and give her something else for the headache.  My point is that now more than ever, we need to advocate for decent care for our loved ones.
    Sorry for my long post, my point of it is to hang onto hope.  
    Take care,
    Steff
  3. Like
    Steff got a reaction from Tom Galli in My dad was diagnosed with Stage IIIC NSCLC in September   
    Hi Ellen,
    I'm sorry I am a bit late with my reply...your post resonated with me on many levels.  One of the questions you asked was: I just want to know if there’s hope that this will all pay off for him?  -my answer is - I don't know.  But I do know that without any treatment, the outcome probably isn't good.  From the past 5 years of caregiving for my mom with her original lung cancer diagnosis, a lung cancer recurrence, and now leukemia, I have had many of your same questions and concerns.
    When my mom was diagnosed with her lung cancer recurrence (NSCLC), her treatment plan included Keytruda + Alimta + Carbo.  She had a rough go with it.  In August of 2017, she spent 2 weeks in the hospital with pneumonia, infection, C-Diff, and fluid on the lung.  There were times that I thought I wouldn't be taking her home.  Despite having a chest tube, fluid continued to build up and her breathing was labored.  It was very scary, but she pulled through.  Your dad can too.
    During the nearly 2 years of Chemo + Keytruda (only the first 6 months with chemo, the rest with Keytruda alone) she had to take pauses between treatments because of the side effects.  If I recall correctly, her longest pause was 3 months - due to pneumonitis.  It's not uncommon to need to take pauses in cancer treatment.  In my mom's case, these pauses did not have a negative effect on her treatment outcome - she still continues to show no evidence of lung cancer.  While I understand that your dad's docs do not want to continue with Keytruda right now, if I were you, I would discuss the possibility of trying it again once he fully recovers.  None of the side effects that you are reporting necessarily points to Keytruda side effects.  His hip pain may or may not be related, especially if he had hip pain before Keytruda.  If his docs do not want to continue with Keytruda, I would request specific reasons why.  I am saying this because Keytruda can have very positive results.  Because Keytruda is a new treatment within the past 5 or so years, docs sometimes want to blame everything on it because they don't have as much experience with it as chemo.
    I can tell you that my mom did have to permanently stop Keytruda due to severe side effects - after about 18 months of taking it.  She ultimately stopped because she had severe lower GI inflammation.  Since she had been NED for over 1 year, her docs decided to stop treatment and see what happens.  Thankfully, her lung cancer has stayed away and she celebrated her 5 year lung cancerversary in December 2020.
    I wish I had a crystal ball to tell you what to expect with your dad.  I can say that the bad times got better with my mom and were luckily just a bump in the road.  I am hoping that this is just a bump in the road for your dad.  I'm not sure if you or other family are allowed to be with your dad while in the hospital (our hospitals are closed to visitors), but your dad really needs an advocate to make sure he is getting the he deserves and is paying for.  Some one needs to be his voice and demand top notch care.  During my mom's last hospital stay, over Christmas, she was not able to have visitors due to high COVID numbers in the community.  She was in the hospital for 3 weeks and she often had to wait over 20 minutes for a nurse to come and allow her to use the bathroom.  The excuse was they were overrun with COVID patients and short staffed on the Oncology floor.  She was taken off meds she shouldn't have been.  Without my advocacy and watching over her, she was out of her mind on Oxycontin that they were giving her for a headache!!  It took 4 days for me to make them take her off of the Oxy and give her something else for the headache.  My point is that now more than ever, we need to advocate for decent care for our loved ones.
    Sorry for my long post, my point of it is to hang onto hope.  
    Take care,
    Steff
  4. Like
    Steff got a reaction from GaryG in My dad was diagnosed with Stage IIIC NSCLC in September   
    Hi Ellen,
    I'm sorry I am a bit late with my reply...your post resonated with me on many levels.  One of the questions you asked was: I just want to know if there’s hope that this will all pay off for him?  -my answer is - I don't know.  But I do know that without any treatment, the outcome probably isn't good.  From the past 5 years of caregiving for my mom with her original lung cancer diagnosis, a lung cancer recurrence, and now leukemia, I have had many of your same questions and concerns.
    When my mom was diagnosed with her lung cancer recurrence (NSCLC), her treatment plan included Keytruda + Alimta + Carbo.  She had a rough go with it.  In August of 2017, she spent 2 weeks in the hospital with pneumonia, infection, C-Diff, and fluid on the lung.  There were times that I thought I wouldn't be taking her home.  Despite having a chest tube, fluid continued to build up and her breathing was labored.  It was very scary, but she pulled through.  Your dad can too.
    During the nearly 2 years of Chemo + Keytruda (only the first 6 months with chemo, the rest with Keytruda alone) she had to take pauses between treatments because of the side effects.  If I recall correctly, her longest pause was 3 months - due to pneumonitis.  It's not uncommon to need to take pauses in cancer treatment.  In my mom's case, these pauses did not have a negative effect on her treatment outcome - she still continues to show no evidence of lung cancer.  While I understand that your dad's docs do not want to continue with Keytruda right now, if I were you, I would discuss the possibility of trying it again once he fully recovers.  None of the side effects that you are reporting necessarily points to Keytruda side effects.  His hip pain may or may not be related, especially if he had hip pain before Keytruda.  If his docs do not want to continue with Keytruda, I would request specific reasons why.  I am saying this because Keytruda can have very positive results.  Because Keytruda is a new treatment within the past 5 or so years, docs sometimes want to blame everything on it because they don't have as much experience with it as chemo.
    I can tell you that my mom did have to permanently stop Keytruda due to severe side effects - after about 18 months of taking it.  She ultimately stopped because she had severe lower GI inflammation.  Since she had been NED for over 1 year, her docs decided to stop treatment and see what happens.  Thankfully, her lung cancer has stayed away and she celebrated her 5 year lung cancerversary in December 2020.
    I wish I had a crystal ball to tell you what to expect with your dad.  I can say that the bad times got better with my mom and were luckily just a bump in the road.  I am hoping that this is just a bump in the road for your dad.  I'm not sure if you or other family are allowed to be with your dad while in the hospital (our hospitals are closed to visitors), but your dad really needs an advocate to make sure he is getting the he deserves and is paying for.  Some one needs to be his voice and demand top notch care.  During my mom's last hospital stay, over Christmas, she was not able to have visitors due to high COVID numbers in the community.  She was in the hospital for 3 weeks and she often had to wait over 20 minutes for a nurse to come and allow her to use the bathroom.  The excuse was they were overrun with COVID patients and short staffed on the Oncology floor.  She was taken off meds she shouldn't have been.  Without my advocacy and watching over her, she was out of her mind on Oxycontin that they were giving her for a headache!!  It took 4 days for me to make them take her off of the Oxy and give her something else for the headache.  My point is that now more than ever, we need to advocate for decent care for our loved ones.
    Sorry for my long post, my point of it is to hang onto hope.  
    Take care,
    Steff
  5. Like
    Steff got a reaction from GaryG in Scanziety.   
    Hi Deb,
    I hope your scan was uneventful today and your doctor appointment is even more uneventful tomorrow.  I wanted to chime in about your GI concerns.  My mom's severe colitis did not come on until 2 months after she was on a break from Keytruda.  The issues were severe enough that it landed her in the hospital.  Since she had been NED for about 1 year prior to her break, the severe colitis was the deciding factor to stop Keytruda permanently.  If there was a big concern for recurrence at that time, they would have paused Keytruda and administered steroids.  She would then start back up Keytruda to see if the colitis reappeared.  I cannot remember if you were one who was receiving a larger dose less often, but there is something to be said about increased side effects and larger doses. 
  6. Haha
    Steff reacted to LexieCat in Feels good....to feel good   
    Great to hear, Tom! LOL, my mom used to say certain things were "like hitting yourself in the head because it feels so good when you stop." I think chemo is definitely one of those things. 
  7. Like
    Steff reacted to TJM in Feels good....to feel good   
    I may have had a struggle with bleeding from blood thinners the last week, but overall I feel the best I have felt in a year. This is what I expected. Go thru the ordeal of Chemo and radiation in the Hope of good days. Well, good days are here.
    For all of you who are going thru the same ordeal....it can pay off.
    Peace
    Tom
  8. Like
    Steff got a reaction from catlady91 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
  9. Like
    Steff reacted to LexieCat in 5 years later...   
    You and your mom are real troupers! Congrats to both of you--and tell your mom I said hi.
  10. Like
    Steff reacted to Susan Cornett in 5 years later...   
    Hi Steff - 
    Congratulations to your mom and you - her caregiver! Wonderful news!!
  11. Like
    Steff got a reaction from Tom Galli 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
  12. Like
    Steff got a reaction from Deb W 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!  
  13. Like
    Steff got a reaction from Deb W 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
  14. Like
    Steff got a reaction from LouT 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!  
  15. Like
    Steff got a reaction from Jennedy 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
  16. Like
    Steff got a reaction from TJM 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!  
  17. Like
    Steff got a reaction from Susan Cornett 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
  18. Like
    Steff got a reaction from GaryG 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!  
  19. Like
    Steff reacted to BridgetO in 5 years later...   
    Happy cancerversary to you
    Happy cancerversary to you
    Happy cancerversay, dear Steff's mom
    Happy cancerversary to you.  And many MORE!
    Love to hear survival stories. Say hi to her from me.
    Bridget O
  20. Like
    Steff reacted to GaryG in 5 years later...   
    Hi Steff: Good to read from you again and celebrate with you your mom's survival. Sorry about the leukemia and hopefully  it will be in the rearview mirror just like lung cancer. When I wrote my first message under the name Triplet I was frightened, ignorant about lung cancer and ready to call it quit. You were first to respond to my post  with your Moms story and needless to say it was an attitude changer. You gave me hope and encouraged me not to give up. I am happy to let you know that my lung cancer is now reduced by over 90% so many thanks to you and your Mom and I hope we celebrate the next five years together again.
    GaryG
  21. Like
    Steff reacted to Judy M2 in 5 years later...   
    Steff, congratulations to your mom! Although I am sorry about her leukemia and hope that gets treated as effectively as her lung cancer was. 
    Stories like your mother's make me optimistic for my future. At the time of my diagnosis of Stage IIIB last year, I hoped to survive a year. But one year later and I'm feeling good. 
    Glad you both were able to celebrate this really great achievement. 
  22. Like
    Steff got a reaction from LouT 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
  23. Like
    Steff got a reaction from BridgetO 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
  24. Like
    Steff got a reaction from Rower Michelle 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
  25. Like
    Steff got a reaction from TJM 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
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