Neil ? Whats up with that tongue Jason

Limelife50
Limelife50 Member Posts: 476

Have not seen any posts or responses from Neil anyone know anything?

«13

Comments

  • NanoSecond
    NanoSecond Member Posts: 653
    Thanks for asking.

    I am still here - reading every message but refraining from posting as much as in the past.

    I developed a second case of pneumonitis this past week.  The treatment, like last time, involves my stopping taking Afinitor (which has kept my aggressive liver mets in check but not the slow growing lymph nodes) and taking a steroid (prednisone).

    However, this new case is not as severe as the previous one that landed me in the hospital for 4 days.  I will be able to restart Afinitor in another 2 days.

    I am afraid that nothing can be done regarding those lymph nodes though.

    Keep in mind that two immune drugs (a clinical trial of an experimental anti-PDL1 drug and later, Keytruda off label) have already failed me.  As has Sutent, Inlyta, and Cabozantinib.

  • Jojo61
    Jojo61 Member Posts: 1,309 Member

    Thanks for asking.

    I am still here - reading every message but refraining from posting as much as in the past.

    I developed a second case of pneumonitis this past week.  The treatment, like last time, involves my stopping taking Afinitor (which has kept my aggressive liver mets in check but not the slow growing lymph nodes) and taking a steroid (prednisone).

    However, this new case is not as severe as the previous one that landed me in the hospital for 4 days.  I will be able to restart Afinitor in another 2 days.

    I am afraid that nothing can be done regarding those lymph nodes though.

    Keep in mind that two immune drugs (a clinical trial of an experimental anti-PDL1 drug and later, Keytruda off label) have already failed me.  As has Sutent, Inlyta, and Cabozantinib.

    I have noticed your absence,

    I have noticed your absence, as well, Neiil. I am sure everyone has....wishing you a quick recovery!

    Hugs

    Jojo

  • sblairc
    sblairc Member Posts: 585

    Thanks for asking.

    I am still here - reading every message but refraining from posting as much as in the past.

    I developed a second case of pneumonitis this past week.  The treatment, like last time, involves my stopping taking Afinitor (which has kept my aggressive liver mets in check but not the slow growing lymph nodes) and taking a steroid (prednisone).

    However, this new case is not as severe as the previous one that landed me in the hospital for 4 days.  I will be able to restart Afinitor in another 2 days.

    I am afraid that nothing can be done regarding those lymph nodes though.

    Keep in mind that two immune drugs (a clinical trial of an experimental anti-PDL1 drug and later, Keytruda off label) have already failed me.  As has Sutent, Inlyta, and Cabozantinib.

    Glad to see you check in!

    Spent last night doing a lot of reading about tumor necrosis, (particularly extensive tumor necrosis as it pertains to chromophobe) and thought of you and all you the knowledge you have offered here for us.

     

    Thanks for the update!!!

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    sblairc said:

    Glad to see you check in!

    Spent last night doing a lot of reading about tumor necrosis, (particularly extensive tumor necrosis as it pertains to chromophobe) and thought of you and all you the knowledge you have offered here for us.

     

    Thanks for the update!!!

    Dang Neil!! ENUFF! 
    Yes, you

    Dang Neil!! ENUFF! 

    Yes, you have been missed. I am so sorry for what you are going through, again. Glad you responded though.. it means a lot to us, that YOU know,

    we care.

    That said, still...ENUFF!!

    Sending you gentle hugs and the knowledge that now I'll be thinking of you,

    more and more and more and more..

    Jan

  • jason.2835
    jason.2835 Member Posts: 337 Member
    Ha!

    Limer,

    Just a stupid selfie we took in Myrtle Beach this past year before we went on a jet ski "excursion."  First time we ever rode them; in the open ocean no less.  Scared to DEATH!  That was right before we pulled out of the dock.  

    I knew I had the tumor during that vacation; when we got back that next week I was scheduled to see the surgeon on Monday morning, so I will always remember that vacation because of all the stuff that was on my mind... I really tried to put it out of my head and have a good time.  I think we did :-)

    - Jay

  • hydrangea
    hydrangea Member Posts: 32

    Thanks for asking.

    I am still here - reading every message but refraining from posting as much as in the past.

    I developed a second case of pneumonitis this past week.  The treatment, like last time, involves my stopping taking Afinitor (which has kept my aggressive liver mets in check but not the slow growing lymph nodes) and taking a steroid (prednisone).

    However, this new case is not as severe as the previous one that landed me in the hospital for 4 days.  I will be able to restart Afinitor in another 2 days.

    I am afraid that nothing can be done regarding those lymph nodes though.

    Keep in mind that two immune drugs (a clinical trial of an experimental anti-PDL1 drug and later, Keytruda off label) have already failed me.  As has Sutent, Inlyta, and Cabozantinib.

    Glad you checking in

    Neil,

    It is good to read your posting this evening.  I am sorry to hear that you are taking prednisone but soon this

    will stop and you can restart Afinitor.  May Afinitor continue to help you.  I am also on prednisone for lung issues

    and can't wait to finish it!

    Please know how much your extensive knowledge had helped me to keep informed about our nasty disease.

    I appreciate all that you have done for everyone on this site.  I hope you will continue to read messages and

    post every now and then.

    Wishing you the very best,

    Diane

     

  • brea588
    brea588 Member Posts: 240

    Thanks for asking.

    I am still here - reading every message but refraining from posting as much as in the past.

    I developed a second case of pneumonitis this past week.  The treatment, like last time, involves my stopping taking Afinitor (which has kept my aggressive liver mets in check but not the slow growing lymph nodes) and taking a steroid (prednisone).

    However, this new case is not as severe as the previous one that landed me in the hospital for 4 days.  I will be able to restart Afinitor in another 2 days.

    I am afraid that nothing can be done regarding those lymph nodes though.

    Keep in mind that two immune drugs (a clinical trial of an experimental anti-PDL1 drug and later, Keytruda off label) have already failed me.  As has Sutent, Inlyta, and Cabozantinib.

    so glad

    you are doing some better.  Will be praying for you and that you will get back on your meds soon.  Thoughts and prayers are with you.

  • NanoSecond
    NanoSecond Member Posts: 653
    hydrangea said:

    Glad you checking in

    Neil,

    It is good to read your posting this evening.  I am sorry to hear that you are taking prednisone but soon this

    will stop and you can restart Afinitor.  May Afinitor continue to help you.  I am also on prednisone for lung issues

    and can't wait to finish it!

    Please know how much your extensive knowledge had helped me to keep informed about our nasty disease.

    I appreciate all that you have done for everyone on this site.  I hope you will continue to read messages and

    post every now and then.

    Wishing you the very best,

    Diane

     

    Thank you all

    Diane, Jan, and all who have posted such kind thoughts and support.

    Thank you.

    Today is my last day on prednisone so I will restarting Afinitor tomorrow.

    My major issue right now is, ironically only peripherally related to my renal cancer.  About a week ago I twisted or pulled a muscle in my back trying to lift something I should not have.

    Then, when I was dealing with the symptoms of pneumonitis last week I managed to twist or pull that same wound even further.  So now I experience excruciating pain when I stand up or get up from lying down.  Worse, I cannot sleep on my side because if I toss and turn the pain wakes me up.  And I am not used to sleeping on my back only. As such I have little sleep the past 3 nights - although I did manage to do better last night.

    Many thanks again,

     

    -Neil

     

  • APny
    APny Member Posts: 1,995 Member

    Ha!

    Limer,

    Just a stupid selfie we took in Myrtle Beach this past year before we went on a jet ski "excursion."  First time we ever rode them; in the open ocean no less.  Scared to DEATH!  That was right before we pulled out of the dock.  

    I knew I had the tumor during that vacation; when we got back that next week I was scheduled to see the surgeon on Monday morning, so I will always remember that vacation because of all the stuff that was on my mind... I really tried to put it out of my head and have a good time.  I think we did :-)

    - Jay

    Neil, that back issue was the

    Neil, that back issue was the last thing you needed on top of everything else. Hope it resolves itself and you get some relief and sleep. Feel better! Glad you can resume the Afinitor.

  • Jan4you
    Jan4you Member Posts: 1,330 Member

    Thank you all

    Diane, Jan, and all who have posted such kind thoughts and support.

    Thank you.

    Today is my last day on prednisone so I will restarting Afinitor tomorrow.

    My major issue right now is, ironically only peripherally related to my renal cancer.  About a week ago I twisted or pulled a muscle in my back trying to lift something I should not have.

    Then, when I was dealing with the symptoms of pneumonitis last week I managed to twist or pull that same wound even further.  So now I experience excruciating pain when I stand up or get up from lying down.  Worse, I cannot sleep on my side because if I toss and turn the pain wakes me up.  And I am not used to sleeping on my back only. As such I have little sleep the past 3 nights - although I did manage to do better last night.

    Many thanks again,

     

    -Neil

     

    OH NOOO!!! I am sorry you are

    OH NOOO!!! I am sorry you are going through a back issue too!! ENUFFFF!!!!

    I wonder if you'd consider using one of those lumbar, velcro back wraps that have magnets inside.

    I have used it for my back, my rib cage spasms that used to take my breath away. And I used it for two of my abdominal surgeries. You can tighten outside straps too, plus the overall wrap.

    THAT way your sore muscles get some support and it makes it

    much easier to get UP and such.

    Why not try that? Sold at most drug stores.

    I also put dry ice inside the wrap along the sore area to help with pain.

     

    Just a thought..

    Jan

  • NanoSecond
    NanoSecond Member Posts: 653
    Jan4you said:

    OH NOOO!!! I am sorry you are

    OH NOOO!!! I am sorry you are going through a back issue too!! ENUFFFF!!!!

    I wonder if you'd consider using one of those lumbar, velcro back wraps that have magnets inside.

    I have used it for my back, my rib cage spasms that used to take my breath away. And I used it for two of my abdominal surgeries. You can tighten outside straps too, plus the overall wrap.

    THAT way your sore muscles get some support and it makes it

    much easier to get UP and such.

    Why not try that? Sold at most drug stores.

    I also put dry ice inside the wrap along the sore area to help with pain.

     

    Just a thought..

    Jan

    Cold followed by heat

    Many thanks for that suggestion Jan.  I may just take you up on it.

    What I have been doing is using ice packs for 20 minutes (and then stopping for a few hours) but now I am going to switch to a heating pad.  Following recommendations found at Google University.

    It is slowly healing.  The big problem is trying to train myself to sleep on my back (only).  If I manage that I think I can lick this thing.

    Best wishes,

     

    -Neil

  • NewDay
    NewDay Member Posts: 272
    APny said:

    Neil, that back issue was the

    Neil, that back issue was the last thing you needed on top of everything else. Hope it resolves itself and you get some relief and sleep. Feel better! Glad you can resume the Afinitor.

    Sleeping

    Hi Neil,

    I'm sorry you are dealing with this on top of treatment.  If it's not one thing, it's another.

    I, too, am a side sleeper.  To minimize my rolling over when sleeping on my side, I stuffed pillows behind my back.  I sometimes slept in a recliner, but I don't know if that works for you.  I hope all of this settles down soon.

    Is Affinitor one of those drugs that weakens you immune system and makes you more susceptible to illness and infection?  It is the next drug my doctor has in mind for me.

    Kathy

  • I am alive
    I am alive Member Posts: 315
    NewDay said:

    Sleeping

    Hi Neil,

    I'm sorry you are dealing with this on top of treatment.  If it's not one thing, it's another.

    I, too, am a side sleeper.  To minimize my rolling over when sleeping on my side, I stuffed pillows behind my back.  I sometimes slept in a recliner, but I don't know if that works for you.  I hope all of this settles down soon.

    Is Affinitor one of those drugs that weakens you immune system and makes you more susceptible to illness and infection?  It is the next drug my doctor has in mind for me.

    Kathy

    Neil, I'm sorry you are in

    Neil, I'm sorry you are in pain and battling pneumonitis. You are such a stalwart here and on SP, so generous with your knowledge and compassion. I feel powerless to add anything worthwhile to what has already been said, but I want you to know that I am thinking of you and sending good thoughts & hugs your way. Please keep us posted. We care and worry about you.

  • NanoSecond
    NanoSecond Member Posts: 653
    NewDay said:

    Sleeping

    Hi Neil,

    I'm sorry you are dealing with this on top of treatment.  If it's not one thing, it's another.

    I, too, am a side sleeper.  To minimize my rolling over when sleeping on my side, I stuffed pillows behind my back.  I sometimes slept in a recliner, but I don't know if that works for you.  I hope all of this settles down soon.

    Is Affinitor one of those drugs that weakens you immune system and makes you more susceptible to illness and infection?  It is the next drug my doctor has in mind for me.

    Kathy

    Afinitor

    Hi Kathy.  Yes, I have tried that.  The problem is mostly psychological.  I am just not used to falling asleep on my back.

    And yes, Afinitor is immune suppressive.  Big time.

    Also, you must stop taking it while on any steroids like prednisone.

    However, I am off of prednisone as of today.  And will resume Afinitor tonight (I take it before going to sleep).

    Thanks for your suggestions,

     

    -Neil

  • foroughsh
    foroughsh Member Posts: 779

    Afinitor

    Hi Kathy.  Yes, I have tried that.  The problem is mostly psychological.  I am just not used to falling asleep on my back.

    And yes, Afinitor is immune suppressive.  Big time.

    Also, you must stop taking it while on any steroids like prednisone.

    However, I am off of prednisone as of today.  And will resume Afinitor tonight (I take it before going to sleep).

    Thanks for your suggestions,

     

    -Neil

    Neil, I'm happy to see your

    Neil, I'm happy to see your post,  often think of you as you're one of the first ones in this board who gave me lots of kidney cancer information by your document. wishing you all the best, hoping this drug does what it is supposed to do.

  • Limelife50
    Limelife50 Member Posts: 476

    Thanks for asking.

    I am still here - reading every message but refraining from posting as much as in the past.

    I developed a second case of pneumonitis this past week.  The treatment, like last time, involves my stopping taking Afinitor (which has kept my aggressive liver mets in check but not the slow growing lymph nodes) and taking a steroid (prednisone).

    However, this new case is not as severe as the previous one that landed me in the hospital for 4 days.  I will be able to restart Afinitor in another 2 days.

    I am afraid that nothing can be done regarding those lymph nodes though.

    Keep in mind that two immune drugs (a clinical trial of an experimental anti-PDL1 drug and later, Keytruda off label) have already failed me.  As has Sutent, Inlyta, and Cabozantinib.

    Hey

    I am just happy Neil to see you are still with us i am  how ever a litte concearned about the lack of responses you have been getting from your drug therapies.Hope you will be well soon enough to restart your treatment.

  • angec
    angec Member Posts: 924

    Afinitor

    Hi Kathy.  Yes, I have tried that.  The problem is mostly psychological.  I am just not used to falling asleep on my back.

    And yes, Afinitor is immune suppressive.  Big time.

    Also, you must stop taking it while on any steroids like prednisone.

    However, I am off of prednisone as of today.  And will resume Afinitor tonight (I take it before going to sleep).

    Thanks for your suggestions,

     

    -Neil

    Neil, when you say that the

    Neil, when you say that the pdl has failed you, did they actually give it enough time? I know when you take it the mets or nodes can swell. It seems tht little time has passed in between giving you differnt meds.  How about radiation on the nodes? They did that will little Joey, remember?  Praying for you!

  • NanoSecond
    NanoSecond Member Posts: 653
    angec said:

    Neil, when you say that the

    Neil, when you say that the pdl has failed you, did they actually give it enough time? I know when you take it the mets or nodes can swell. It seems tht little time has passed in between giving you differnt meds.  How about radiation on the nodes? They did that will little Joey, remember?  Praying for you!

    Failing anti-PD1

    Ange,

    Sometimes failure is just failure.  I was on it for about 3 months. I had to stop for risk of losing my liver yet again.

    Best,

     

    -Neil

  • todd121
    todd121 Member Posts: 1,448

    Failing anti-PD1

    Ange,

    Sometimes failure is just failure.  I was on it for about 3 months. I had to stop for risk of losing my liver yet again.

    Best,

     

    -Neil

    Hi Neil

    I just wanted to say hello and that I was glad to see your updates. I'm not reading or posting much and falling behind here.

    Hope the afinitor keeps things in check and your back heals up. I had cracked a rib before and remember how hard it was to sleep when you turn over it hurts in bed.

    All the best,

    Todd

  • NanoSecond
    NanoSecond Member Posts: 653
    todd121 said:

    Hi Neil

    I just wanted to say hello and that I was glad to see your updates. I'm not reading or posting much and falling behind here.

    Hope the afinitor keeps things in check and your back heals up. I had cracked a rib before and remember how hard it was to sleep when you turn over it hurts in bed.

    All the best,

    Todd

    Hi Todd

    Hi Todd,

    It is always a pleasure to read your posts.

    Yes, the Afinitor is working to stabilize my liver mets.  There may even be some shrinkage.  But it does not appear that it is effective against my lymph node mets (some of which are huge).  Still, the lymph mets are slow growing (so far).

    The pain in my back is still there but no where as severe.  In fact I have to push on the exact spot to feel the pain.  It is possible it is a bone met.  Yesterday I started back on Xgeva to deal with that possibility and a couple of other lytic areas that have just become active again.

    I hope all is well with you.

    Best wishes,

     

    -Neil