Neil ? Whats up with that tongue Jason

2

Comments

  • Jojo61
    Jojo61 Member Posts: 1,309 Member

    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

    Neil,
    Just wanted to say that

    Neil,

    Just wanted to say that I hope that things keep improving or stay stable and that your pneumanitis (sp?) is gone or at least very much improved.

    Hugs

    Jojo

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    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
    Glad to see you!

    Hi Todd

    Glad to see you! Don't worry about falling behind here! We are always happy to see you here and I hope you are doing okay now that you are back at work?

    Hugs

    Jojo

  • NanoSecond
    NanoSecond Member Posts: 653
    Jojo61 said:

    Neil,
    Just wanted to say that

    Neil,

    Just wanted to say that I hope that things keep improving or stay stable and that your pneumanitis (sp?) is gone or at least very much improved.

    Hugs

    Jojo

    Jojo

    Many, many thanks Jojo.

    The pneumonitis is gone so I am able to get back on Afinitor.

    I continue to regain strength each day so I am very much improved.

    Thanks for thinking of me.

    Best wishes,

     

    -Neil

  • angec
    angec Member Posts: 924

    Jojo

    Many, many thanks Jojo.

    The pneumonitis is gone so I am able to get back on Afinitor.

    I continue to regain strength each day so I am very much improved.

    Thanks for thinking of me.

    Best wishes,

     

    -Neil

    Glad you are getting better,

    Glad you are getting better, Neil! Praying for you!  What can they do/add to help with the nodes?  How are you otherwise? How are you managing with your weight and other things?  Hope you get to enjoy some of this spring weather, whenever it decides to live up to it's name! ;)

  • NanoSecond
    NanoSecond Member Posts: 653
    angec said:

    Glad you are getting better,

    Glad you are getting better, Neil! Praying for you!  What can they do/add to help with the nodes?  How are you otherwise? How are you managing with your weight and other things?  Hope you get to enjoy some of this spring weather, whenever it decides to live up to it's name! ;)

    Update

    Many thanks Ange.

    I am doing well now, all things considered.  My biggest issue is fatigue.  I can only sleep in a certain position on my side and it is difficult to "retrain" myself not to roll over, etc.

    Each day I do seem to gain just a little more strength. But only slowly. Very slowly.

    My weight is stable and my appetite remains excellent.

    We are working on some ideas for those lymph nodes - I'll know more later this week.

    After I started to recover from my first near death experience last summer my wife and I decided to (finally, after 20 years of talking about it) add a large screened porch on to our house.  It was completed in November - just days before the bitter cold and winter weather sit in, so no chance to try it out then.

    But in the last few weeks we have been thoroughly enjoying the weather and our new porch.  I am so glad we finally bit that bullet...

    I hope all is well with you and your family.

    Best wishes,

     

    -Neil

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    Jojo61 said:

    Hi Todd
    Glad to see you!

    Hi Todd

    Glad to see you! Don't worry about falling behind here! We are always happy to see you here and I hope you are doing okay now that you are back at work?

    Hugs

    Jojo

    Sending you a warm hug and

    Sending you a warm hug and hello Neil!

    Its okay if you only read these posts and rest up!

    Any improvment for your pneumonitis?

    And I cannot remember why you need to sleep on your back,

    but hope it won't be that long before you can get more comfy.

    Just know I am thinking of you and wishing you wellness.

    Hope the treatments help..

     

    Warmly, Jan

  • NanoSecond
    NanoSecond Member Posts: 653
    Jan4you said:

    Sending you a warm hug and

    Sending you a warm hug and hello Neil!

    Its okay if you only read these posts and rest up!

    Any improvment for your pneumonitis?

    And I cannot remember why you need to sleep on your back,

    but hope it won't be that long before you can get more comfy.

    Just know I am thinking of you and wishing you wellness.

    Hope the treatments help..

     

    Warmly, Jan

    Thanks for those hugs

    Hi Jan.

    My pneumonitis (2nd bout) cleared up about 2 weeks ago.

    I have to sleep on my back or side because I have large liver and lymph node mets.  I literally look like a pregnant walrus.  No, it is not a giant beer-belly - my abdomen is just all full of tumors.

    I am working on ways to be able sleep comfortably but it is a struggle.  I got very little sleep last night but the night before I slept like a baby. Go figure.

    As always, your kind thoughts and prayers are greatly appreciated.

    Best wishes,

     

    -Neil

     

  • Jan4you
    Jan4you Member Posts: 1,330 Member

    Thanks for those hugs

    Hi Jan.

    My pneumonitis (2nd bout) cleared up about 2 weeks ago.

    I have to sleep on my back or side because I have large liver and lymph node mets.  I literally look like a pregnant walrus.  No, it is not a giant beer-belly - my abdomen is just all full of tumors.

    I am working on ways to be able sleep comfortably but it is a struggle.  I got very little sleep last night but the night before I slept like a baby. Go figure.

    As always, your kind thoughts and prayers are greatly appreciated.

    Best wishes,

     

    -Neil

     

    Sorry, Neil, do not mean to

    Sorry, Neil, do not mean to bother you. But learning WHY you cannot get comfortable to sleep breaks my heart...sigh..

     

    Is it like ascites? I remember when I worked in addiction, those with end stage alcoholism would get ascites.. is it fluid too that you contend with? (besides the tumors I mean).

    Your resignment toward this part of your life.. is amazing to me. I think I would be either kicking and screaming a bit .. or.. laughing..

    But who knows until you truly have to face this.

    Extra hugs and prayers for you to find relief, Neil~

    Glad you built your 3 season room and can enjoy it.

    Would you make sure your wife or someone, would inform us on how

    you're doing when you are not up to it please? Please???

    Jan

  • Thanks for those hugs

    Hi Jan.

    My pneumonitis (2nd bout) cleared up about 2 weeks ago.

    I have to sleep on my back or side because I have large liver and lymph node mets.  I literally look like a pregnant walrus.  No, it is not a giant beer-belly - my abdomen is just all full of tumors.

    I am working on ways to be able sleep comfortably but it is a struggle.  I got very little sleep last night but the night before I slept like a baby. Go figure.

    As always, your kind thoughts and prayers are greatly appreciated.

    Best wishes,

     

    -Neil

     

    Neil- sorry to hear about

    Neil- sorry to hear about your troubles and the problems sleeping.  I'm a stomach and side sleeper too, and I had similar issues after my open partial nephrectomy.  I finally resorted to sleeping in a recliner.  When I got back to sleeping in bed, I tried propping pillows on each side of me to prevent rolling over. 

  • NanoSecond
    NanoSecond Member Posts: 653
    Jan4you said:

    Sorry, Neil, do not mean to

    Sorry, Neil, do not mean to bother you. But learning WHY you cannot get comfortable to sleep breaks my heart...sigh..

     

    Is it like ascites? I remember when I worked in addiction, those with end stage alcoholism would get ascites.. is it fluid too that you contend with? (besides the tumors I mean).

    Your resignment toward this part of your life.. is amazing to me. I think I would be either kicking and screaming a bit .. or.. laughing..

    But who knows until you truly have to face this.

    Extra hugs and prayers for you to find relief, Neil~

    Glad you built your 3 season room and can enjoy it.

    Would you make sure your wife or someone, would inform us on how

    you're doing when you are not up to it please? Please???

    Jan

    Successful nights sleep

    Hi Jan.

    Many thanks.  Yes, there are some ascites.  That is why I get Avastin infusions every 3 weeks (it works as a diurectic).  But the primary problem are the tumors.

    I did manage to get full night's sleep last night.  So my experimenting may have finally paid off.  I discovered that I can suppress my cough without having to resort to any low-dose Morphine! What a relief.  The secret?  Nasalcort.  I am amazed.

    My wife is lurking on SmartPatients and will post there when/if I cannot.  Her name is Judy.

    I am reluctuant to post much here about my future, etc. as I don't wish to diminish the great positive vibes and optimism displayed by all - especially Fox.  But for me death is the flip-side of life.  You can't have one without the other.  The luck of the draw for me (and for too many others, like Tex) is that my version mRCC turned highly aggresive. I am afraid that happens every now and then.

    Best wishes,

     

    -Neil

  • Srashedb
    Srashedb Member Posts: 482

    Successful nights sleep

    Hi Jan.

    Many thanks.  Yes, there are some ascites.  That is why I get Avastin infusions every 3 weeks (it works as a diurectic).  But the primary problem are the tumors.

    I did manage to get full night's sleep last night.  So my experimenting may have finally paid off.  I discovered that I can suppress my cough without having to resort to any low-dose Morphine! What a relief.  The secret?  Nasalcort.  I am amazed.

    My wife is lurking on SmartPatients and will post there when/if I cannot.  Her name is Judy.

    I am reluctuant to post much here about my future, etc. as I don't wish to diminish the great positive vibes and optimism displayed by all - especially Fox.  But for me death is the flip-side of life.  You can't have one without the other.  The luck of the draw for me (and for too many others, like Tex) is that my version mRCC turned highly aggresive. I am afraid that happens every now and then.

    Best wishes,

     

    -Neil

    Posting

    Neil:

    first of all, I am sorry that you are going through this downturn in your health; are you no longer able to take affinitor?

    Secondly, Fox started a thread for stage 3/4 to get beyond positivity if you chose to stay. You were so very helpful to me when my husband was first dx.

    Hang in there and get some sleep 

    Sarah

  • sblairc
    sblairc Member Posts: 585

    Successful nights sleep

    Hi Jan.

    Many thanks.  Yes, there are some ascites.  That is why I get Avastin infusions every 3 weeks (it works as a diurectic).  But the primary problem are the tumors.

    I did manage to get full night's sleep last night.  So my experimenting may have finally paid off.  I discovered that I can suppress my cough without having to resort to any low-dose Morphine! What a relief.  The secret?  Nasalcort.  I am amazed.

    My wife is lurking on SmartPatients and will post there when/if I cannot.  Her name is Judy.

    I am reluctuant to post much here about my future, etc. as I don't wish to diminish the great positive vibes and optimism displayed by all - especially Fox.  But for me death is the flip-side of life.  You can't have one without the other.  The luck of the draw for me (and for too many others, like Tex) is that my version mRCC turned highly aggresive. I am afraid that happens every now and then.

    Best wishes,

     

    -Neil

    But I think it's ok. We all need to embrace the flip side

    Hi Neil, 

     

    Part of what has helped me through this process with my husband (Stage 3) is learning from everyone here that is Stage 4. And to be totally honest: Learning to accept the inevitabliity of death and embracing that has helped me tremendously in my own journey as a spouse. I go to therapy and talk this type of stuff out. I think coming here to talk about it, no holds barred, should be something anyone should feel like they can do. 

     

    I've gradualy learned to accept the realities of my husbands locallly advanced Stage 3 diagnosis with extensive necrosis will likely be what brings him to the flip side. I love that the thread was started by Fox, as those are important coversations to be had and I think there are bonds formed here that allow them to happen in a safe place. If someone doesn't want to read it, then they should just not read it. 

     

  • NanoSecond
    NanoSecond Member Posts: 653
    Srashedb said:

    Posting

    Neil:

    first of all, I am sorry that you are going through this downturn in your health; are you no longer able to take affinitor?

    Secondly, Fox started a thread for stage 3/4 to get beyond positivity if you chose to stay. You were so very helpful to me when my husband was first dx.

    Hang in there and get some sleep 

    Sarah

    Afinitor still in the mix

    Hi Sarah.  No, I am back on Afinitor.  It is controlling my liver mets but not my lymph node mets.

    I am about to start an addition drug that may deal with the lymph nodes.  It was first used as part of a clinical trial but is available off-line so I can still get it.

    We'll see what happens...

    I did get a full nights sleep last night - first time in weeks.

    Many thanks.

     

    -Neil

  • foxhd
    foxhd Member Posts: 3,181

    Neil- sorry to hear about

    Neil- sorry to hear about your troubles and the problems sleeping.  I'm a stomach and side sleeper too, and I had similar issues after my open partial nephrectomy.  I finally resorted to sleeping in a recliner.  When I got back to sleeping in bed, I tried propping pillows on each side of me to prevent rolling over. 

    9 lives

    Neil, Somehow I manage to respond to treatments. At least for a while. but nothing lasts. I have likely used up my 9 lives myself. I see the writing on the wall. NED is not in my future. 8 out of 10 times I don'tthink too many people including me would have lived through my last episode in feb. I will enjoy my summer. But the end is closing in. I'm grateful for the time I've been given.

  • NanoSecond
    NanoSecond Member Posts: 653
    foxhd said:

    9 lives

    Neil, Somehow I manage to respond to treatments. At least for a while. but nothing lasts. I have likely used up my 9 lives myself. I see the writing on the wall. NED is not in my future. 8 out of 10 times I don'tthink too many people including me would have lived through my last episode in feb. I will enjoy my summer. But the end is closing in. I'm grateful for the time I've been given.

    Amen Brother

    I think we both know what the future holds...

    I fully agree that most others could have not have tolerated what you have endured (and with such grace and wit) on multiple occasions.

  • todd121
    todd121 Member Posts: 1,448

    Successful nights sleep

    Hi Jan.

    Many thanks.  Yes, there are some ascites.  That is why I get Avastin infusions every 3 weeks (it works as a diurectic).  But the primary problem are the tumors.

    I did manage to get full night's sleep last night.  So my experimenting may have finally paid off.  I discovered that I can suppress my cough without having to resort to any low-dose Morphine! What a relief.  The secret?  Nasalcort.  I am amazed.

    My wife is lurking on SmartPatients and will post there when/if I cannot.  Her name is Judy.

    I am reluctuant to post much here about my future, etc. as I don't wish to diminish the great positive vibes and optimism displayed by all - especially Fox.  But for me death is the flip-side of life.  You can't have one without the other.  The luck of the draw for me (and for too many others, like Tex) is that my version mRCC turned highly aggresive. I am afraid that happens every now and then.

    Best wishes,

     

    -Neil

    Please post

    Neil,

    I hope you'll post whatever you feel up to sharing, without worrying about diminishing anything at all.

    It's on all of our minds (maybe some more than others), whether we say it or not. I would like this to be a place of support for whatever we are going through. This is definitely the elephant in the room. It would not be very honest of all to be peering around it at each other with elephant feces up to our knees and then making joking and acting like it's not there.

    I'm not saying it should get all of our attention. But certainly it deserves a place at the table, and I truly hope you'll come, read, and post freely whatever is on your mind. I will most certainly be grateful for whatever you have to share of your knowledge and experience without judgement. If I've learned anything from this damn disease, it's not to judge anyone until I've been in their shoes.

    Thinking of you.

    Todd

  • NanoSecond
    NanoSecond Member Posts: 653
    todd121 said:

    Please post

    Neil,

    I hope you'll post whatever you feel up to sharing, without worrying about diminishing anything at all.

    It's on all of our minds (maybe some more than others), whether we say it or not. I would like this to be a place of support for whatever we are going through. This is definitely the elephant in the room. It would not be very honest of all to be peering around it at each other with elephant feces up to our knees and then making joking and acting like it's not there.

    I'm not saying it should get all of our attention. But certainly it deserves a place at the table, and I truly hope you'll come, read, and post freely whatever is on your mind. I will most certainly be grateful for whatever you have to share of your knowledge and experience without judgement. If I've learned anything from this damn disease, it's not to judge anyone until I've been in their shoes.

    Thinking of you.

    Todd

    Staying positive

    Hi Todd. Thanks for sharing your thoughts.

    I read every post here every day.  But no, I will not share my current thinking as I am now trying to focus more on death and I don't think this is a forum that needs to consider what I am going through.

    I only wish continued survival and a high quality of life for all here. But my path seems to be headed in a different direction now.

     

  • Jan4you
    Jan4you Member Posts: 1,330 Member

    Staying positive

    Hi Todd. Thanks for sharing your thoughts.

    I read every post here every day.  But no, I will not share my current thinking as I am now trying to focus more on death and I don't think this is a forum that needs to consider what I am going through.

    I only wish continued survival and a high quality of life for all here. But my path seems to be headed in a different direction now.

     

    Neil~ sigh.. I respect your

    Neil~ sigh.. I respect your wishes and glad we can at least know you are on day to day reading our posts/responses. Still.. we miss your words, information and well, just hearing from you..

     

    Again, HUGS, then yet..another sigh...

    Jan

  • Jojo61
    Jojo61 Member Posts: 1,309 Member

    Amen Brother

    I think we both know what the future holds...

    I fully agree that most others could have not have tolerated what you have endured (and with such grace and wit) on multiple occasions.

    Neil, you do what is best for

    Neil, you do what is best for you. Please know that we value your input, your tremendous knowledge, and all the care and concern you have shown others here. We would, in turn, like to support you any way we can.

    I will send my good thoughts your way for the best possible outcome for you.

    Big hugs

    Jojo

  • Footstomper
    Footstomper Member Posts: 1,237

    Amen Brother

    I think we both know what the future holds...

    I fully agree that most others could have not have tolerated what you have endured (and with such grace and wit) on multiple occasions.

    Guarunteed you'll be in our

    Guarunteed you'll be in our thoughts. Wishing you all that you would wish youself