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Neil ? Whats up with that tongue Jason

Limelife50's picture
Limelife50
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Joined: Nov 2011

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

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

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's picture
Jojo61
Posts: 1310
Joined: Oct 2013

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

Hugs

Jojo

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

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's picture
Jan4you
Posts: 1320
Joined: Oct 2013

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

hydrangea's picture
hydrangea
Posts: 32
Joined: Oct 2012

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

 

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

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

 

Jan4you's picture
Jan4you
Posts: 1320
Joined: Oct 2013

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's picture
NanoSecond
Posts: 653
Joined: Oct 2012

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

brea588's picture
brea588
Posts: 240
Joined: Jul 2012

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.

Limelife50's picture
Limelife50
Posts: 476
Joined: Nov 2011

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.

jason.2835
Posts: 337
Joined: Nov 2014

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

APny's picture
APny
Posts: 1947
Joined: Mar 2014

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.

NewDay's picture
NewDay
Posts: 273
Joined: May 2012

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
Posts: 316
Joined: Jul 2012

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's picture
NanoSecond
Posts: 653
Joined: Oct 2012

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's picture
foroughsh
Posts: 775
Joined: Oct 2014

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.

angec's picture
angec
Posts: 923
Joined: Mar 2012

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's picture
NanoSecond
Posts: 653
Joined: Oct 2012

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's picture
todd121
Posts: 1425
Joined: Dec 2012

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's picture
NanoSecond
Posts: 653
Joined: Oct 2012

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

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

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

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

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's picture
angec
Posts: 923
Joined: Mar 2012

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's picture
NanoSecond
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Joined: Oct 2012

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

Jojo61's picture
Jojo61
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Joined: Oct 2013

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

Jan4you's picture
Jan4you
Posts: 1320
Joined: Oct 2013

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's picture
NanoSecond
Posts: 653
Joined: Oct 2012

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's picture
Jan4you
Posts: 1320
Joined: Oct 2013

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

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

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
Posts: 482
Joined: Dec 2013

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

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

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

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

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. 

 

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

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's picture
NanoSecond
Posts: 653
Joined: Oct 2012

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's picture
Jan4you
Posts: 1320
Joined: Oct 2013

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

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

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. 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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's picture
NanoSecond
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Joined: Oct 2012

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.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

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

hydrangea's picture
hydrangea
Posts: 32
Joined: Oct 2012

Neil,

Please know that you are in my daily prayers.  I understand your position at this time and will support you in any way possible.  You have provided so many of us with such in-depth knowledge of this dreadful disease and I appreciate all of the knowledge that you have shared. 

My heart is heavy knowing your focus at this time but know that you are comforted by a loving family.

Sincerely,

Diane

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

Diane - thank you and everyone else for your kind thoughts and prayers.

I do wish I could contribute more but my greatest nemesis right now is extreme fatigue.

 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

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

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