Neil ? Whats up with that tongue Jason

NanoSecond said:

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

Hugs

Jojo

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 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

NanoSecond said:

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.

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

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

 

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

NanoSecond said:

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 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

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.

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

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

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

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!

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 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,

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