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Sending special thoughts and prayers to Neil F. / Nanosecond

angec's picture
angec
Posts: 924
Joined: Mar 2012

Neil, i know you have been having it rough for the past few months and I want to send a special message out to you, to let you know I am thinking about you!  I hope your scan goes well today and the Affinitor does the trick for you. In the meantime, I am praying for you. Keep up that positive attitude that you so generously spread around!  Sending you and your family HUGE hugs and deep prayers.  Get back to your ole self so you can share more valuable information with us, you have been our rock!  Wishing you the best!  XXOO

 

Angec

rook
Posts: 7
Joined: Feb 2014

I have been anxiously awaiting an update to Nanosecond's PD-L1 trial. Did he fail and move onto Afinnitor? Are you sure? Normally one progression is allowed due to tumor inflammation. Given the timeline, he should be still be getting infusions. I hope all is well.

angec's picture
angec
Posts: 924
Joined: Mar 2012

I don't know it is my place to address this but I will.  Neil actually did get off of the trial he was on.  I think it was the Ipl not PD-Ll.  Neil, correct me when you can! :)  He did go on Cabo and that also failed him, and now he is on affinitor, which from the news he just posted on Smart Patients, he said he is stable since the last scan two weeks ago! That is wonderful news!  Hoping Affinitor is the one for him! There are so many now to choose from and with more experience and use, the doctors will be better able to match patients with different ones. Although, the same drug can work differently on different people. Neil would be able to address any questions for you, Rook.  But hang in there, not to worry.  Are you also on the pd-l trial?  I haven't been on the boards too much these days due to too many family members with cancer and other ills. I hope to be more active here in the near future.  Take care..

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

Ange,

Thank you so much for posting on my behalf.  As you know, due to the pain meds I am taking, I have had some difficulty concentrating and even just staying awake.

Rook...

I am afraid that I did fail that clinical trial.  BTW, it was for an anti-PDL1 drug made by EDS Serono.  Apparently not many participants are doing that well on this particular drug either.

Regardless, I immediately moved on to Cabo.  But just as quickly failed it as well.

So a little over 2 weeks ago I started on Afinitor.  A CT-scan yesterday showed (thanks to the grace of God and the prayers and wishes of good will I have been so fortunate to receive) that there has been no progression.  This, for me, is a first.  I have failed, in order: Sutent, Inlyta, anti-PDL1, and Cabo.

Dr. Hammers was particularly shocked that I did not respond to Cabo at all.  He said I was his first failure.

Regardless, I have a reprive which, to be honest, I actually did not think was in the cards for me.

Thank you so very much,

 

-Neil (NanoSecond)

APny's picture
APny
Posts: 1998
Joined: Mar 2014

My thoughts and prayers are with you and I'm hoping Afinitor does what the other meds couldn't.

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Neil,

So glad to have your update. I had noticed few posts in recent weeks. You've been missed.

You're in my thoughts and I hope Afinitor does the job.

Best wishes,

Todd

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

So happy to see this drug is working for you.  I will pray for you daily.  God Bless you.

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Neil, sorry to hear you have been going through such a tough time. Thank god that Afinitor has come through for you, may that long continue! I am due to transfer to Afinitor, my Oncologist has a lot of faith in it. I will keep you in my thoughts and prayers Neil, I hope you start to feel more at ease soon:)

Djinnie x

I am alive
Posts: 315
Joined: Jul 2012

I recently ended 22 months on a trial with Afinitor & Avastin. Enjoyed stability the whole time - still stable, as far as I know. Left because of SEs. Like you, I have chromophobe. My onc told me Afinitor is one of the few drugs that chromophobe traditionally responds to so I am hoping you enjoy a nice long run on it. Wishing you all the best. Your posts on these forums are golden. Pax.

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

What more can I say?

Thank you all for your continued support and prayers.

I do hope to be participating more - but my pain medications have been limiting how much and for how long I can stay focused.  It is, of course, very frustrating for someone like me.

Many thanks to everyone,

 

-Neil

adman's picture
adman
Posts: 338
Joined: Jul 2012

 

...Sending you good thoughts and vibes, may God bless you and keep you safe!! 

 

 

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Angec, what a wonderful friend to offer this update. Thanks~

 

And Neil, I didn't know. So now I will no longer wonder.

Know this, although we don't know one another, I will be

joining the others by sending healing thoughts and prayers

your way. I cannot imagine all you have been through.

 

Whatever you are feeling is okay.

You are never forgotten, but remembered and appreciated

for your knowledge and help.

 

Gentle hugs,

Jan

angec's picture
angec
Posts: 924
Joined: Mar 2012

Jan, thank you so much, for your kind words.  I pray for everyone on these boards, patients and caregivers.  I am so thankfful for everyone here.  Everyone is a family! 

 

XX

DMike's picture
DMike
Posts: 259
Joined: Nov 2011

Hi Neil,

I've been wondering and worrying about you. It's good to hear from you. Sorry about the Cabo but very happy about the Afinitor. I wish you the best!

David

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

Oops.  I meant thanks to David - not Mike.

I guess my brain is still foggy...  :)

Darron's picture
Darron
Posts: 310
Joined: Jun 2013

I hate to hear that you have been struggling. Please know my thoughts and prayers are with you. 

 

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

Thank you Darron and Mike, very much appreciated.

I am doing and feeling much better these days.

a_oaklee
Posts: 567
Joined: Nov 2013

Congrats Neil!  So glad that you continue to feel better every day.  It is really great that you have continued to think of all of us and have shared your journey.  I hope you continue to feel better each and every day.

pam:  I really like what you wrote about drugs failing us!  Good Point!

Annie

cran1's picture
cran1
Posts: 139
Joined: Mar 2013

You are in my thoughts Nano.

pamstayner's picture
pamstayner
Posts: 111
Joined: Apr 2014

Neil, I think of you every day.  I have secured such comfort and security from all the information you have posted...

What I wonder, and it bothers me so greatly, is the wording:   "I failed the trial, or failed sutent, or Cabo, or infinitor.." or whatever. I have read that line so many times from other posts, and just have to say something about it here...

Personally, saying the words I failed makes it seem too defeatest... seems to me we do not fail the trial, or drug... the drug or trial failed us...

We work too hard on all this stuff and endure so much with side effects and QOL, that fail is not something WE do... I believe mind set is a huge percentage of our resolve in this fight... failure is just not something we do... we respond, we work, we DO THIS, and if mets progress, then it is the drug failure... not us.

Sorry for the rant... but I just have to get it out.

Pam...Battle On!

 

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

Thank you all.

Pam, I fully agree with you.  I my brain was not a bit foggy I would have caught that.  These drugs have failed me - not vice aversa.  Thanks for a very pertinent rant.

Right now I am dealing with a buildup of fluid in my lungs and my abdomen. 

It's always sumptin'...

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

Neil, maybe a change in diet will shock your system. A little food for the mind may do wonders. We are all still behind you. Stay dedicated. You are a good fighter. That will never fail.

angec's picture
angec
Posts: 924
Joined: Mar 2012

Sorry to hear about the fluid build up. I have heard that this is the side affect of affinitor on more than one ocassion.  I hope they can do something about this without taking you off of the drug.  In the meantime, i am glad you are feeling better.

I am alive
Posts: 315
Joined: Jul 2012

Excellent point re: the drugs fail us, not vice versa. 

Neil, I'm curious, since I, too, have been experiencing fluid in the abdomen - what has your doc been doing about it? And has the fluid buildup affected your breathing? In other words, do you sometimes get shortness of breath seemingly out of the blue? 

Ive been dealing with edema in the legs and abdomen.. Since getting off the drugs the edema in the legs has pretty much gone away, but there is still some in the abdomen. I still wear compression stockings and often a girdle-type compression undergarment. I've noticed that when wearing the undergarment I do  NOT have as many SOB episodes, if any. Have you experienced anything like this? I'm heading off soon to see my doc and will question him about this. 

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

Hi Neil,

You are in my thoughts and prayers. I hope this drug continues to work for you. You are an inspiratation to us all, as well as someone we all respect and admire. Wishing you strength and a quick recovery.

Big hugs,

Jojo

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

Thank you JoJo - and all of you.

Fox - I have multiple massive liver mets so alcohol is still definite no-no for me.  As for pizza - it actually is a possiblity if I can figure out a suitable substitute for the base (crust).

Afinitor severely raises blood glucose so I am more sensitive than ever to the effects of any excess sugars or processed carbs.

The fluid in my lungs (and abdomen) are due to the fact that my enlarged liver is pushing against various organs.  At first it was just the base of the right lung but now it is in abdomen as well.

One way to stop or possibly reduce fluids is by taking Avastin (this from Dr. Hammers) which is something I may yet try.  However, Diuretics may be just as effective so I am starting with one of them.

Many thanks for all your well wishes,

 

-Neil

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Neil I hope Afinitor does a good job on those liver mets, and the diuretics work quickly on the fluid problems. You must be so uncomfortable at the moment! 

When it comes to an alternative Pizza base cauliflower works surprisingly well. There are lots of recipes out there, might be worth checking it out:)

 

Djinnie 

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

Thanks Djinnie.  Great suggestion.  I will do so.

Of course I have been following your recent turn of events as well. But your attitude in the face of this latest adversity is truly inspiring.  I am there with you.

Best wishes,

 

-Neil

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Thank you Neil, it's a very tough road isn't it? You take good care of yourself! 

 

Djinnie x

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

Indeed it is.  But you please do the same. Don't be hesitant to question your doctors opinions and/or medical recommendations, when necessary.

icemantoo's picture
icemantoo
Posts: 3351
Joined: Jan 2010

Neil,

 

Keep up the fight and kick butt.

 

Icemantoo

danbren2's picture
danbren2
Posts: 311
Joined: May 2013

Nano,

     So sorry to hear about your very rough road right now! So used to reading your very explained remedies that can help us all with this hideious disease!  Hoping and praying everything continues to be stable for you with only the best results yet to come! 

                                                        Prayers for good health!

                                                         Brenda

twinthings's picture
twinthings
Posts: 409
Joined: Jun 2013

Neil, I am at a loss for words right now.  I've been off the board for a while and was just heartsick to read what's been going on with you.  Most everything has already been said and, like so many others, I have lifted you in prayer. 

It just seems wrong that someone who eats so healthy and seemingly takes great care of himself physically, doesn't respond better to treatment.  That's messed up!

I've got to say though, if anyone can beat this, it'd be you. Just got to get past this rough patch and then things will start looking up.  In the meantime, I'll keep you in my prayers.

Sindy

 

Sindy

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

Sindy, Brenda, IceMan (and so many others).

Thank you for your kind thoughts.  The good news is that Afinitor seems to be working and I am feeling much better these days.  My major issue right now is the slow accumulation of fluid in my lungs and abdomen.  Presently we are trying to reduce this through the use of a Diurectic (Spironolactone) but may actually move on to Avastin (just for the fluid - still staying on Afinitor of course) if this drug is not powerful enough to do much.

Of course my other issue is dealing with the side effects of Extended Release Morphine.

I hope everyone here has a very nice and relaxing weekend.

Thanks again,

 

-Neil

a_oaklee
Posts: 567
Joined: Nov 2013

When my husband was on Affinitor he had an extreme amount of fluid build-up in his lower extremities and up into his abdominal area.  At the time he still had his kidney and the thrombus was occluding the vena cava.  I thought at the time, that this was all due to the thrombus occluding return blood flow.  Lasix did not help at all.   I wonder now if in part it was due to the Affinitor.  Hmm?  New docs at a new medical center agreed to remove his kidney and post-op the edema subsided.  After he healed, he wasn't put back on Affinitor, even though it worked well for him.  I should say that it worked well for the bone mets, but the kidney tumor and thrombus were growing.  I have mentioned previously that I continue to find it interesting that the targeted therapy that we have tried has worked differently for the primary tumor versus the bone mets.  (I also know that we are very rare to have not been offered surgery when the tumor was found.  We are still bitter about that, and I hope that those feelings will eventually go away.  But I digress).  I know I have told you Neil, that my husband had few side effects from Affinitor.  I didn't know until now, that fluid retention could have been a side effect as well.

I hope that you continue to feel better Neil, and that you are also enjoying the beautiful weekend.

Annie

 

 

I am alive
Posts: 315
Joined: Jul 2012

Annie & Neil,

Afinitor can definitely cause edema in the abdomen and lower extremities. I recently completed 22 months of a trial using Afinitor and Avastin. About a year in my legs, feet and ankles began swelling. Within four months of the start of the swelling, one leg almost doubled in size.  By six months both legs were involved and the edema began moving into my genital area and abdomen. I wore compression garments and went to a lymphedema physical therapist for lymphatic drainage massage therapy. The therapist and lymphedema literature said I would have this condition for the rest of my life, but my oncologist said it would probably go away when I stopped the Afinitor. He was right. Three weeks after stopping the Afinitor I shed some 20-pounds of fluid and right now - two months after stopping the drugs - only my right leg seems minimally affected. Barely noticeable. Onc says it may disappear completely in time.

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

Thanks to both of you for those additional insights.

Annie - I did enjoy the beautiful weather (here) this weekend and just generally took it easy. I am feeling better except for this fluid issue.

The source of my fluid is both from Afinitor (new) and irritation from my liver mets pushing up against my diaphragm and my right lung.

My oncologist has suggested that we might be able to stop and even reverse (over time) the fluid build up by my taking Avastin.  So, hopefully tomorrow, I will get my first infusion.

In the meantime I have been taking a mild Diurectic which actually does work - but just not quite good enough.  It definitely has reduced the edema in my ankles and legs which is terrific.  But what I need to do is to reduce the fluid in my abdomen and at the base of my right lung.  Hence the Avastin.

Many thanks to both of you,

-Neil

a_oaklee
Posts: 567
Joined: Nov 2013

I hope it goes well for you today Neil.  Glad to hear the diuretic was also helpful. 

Annie

Skagway Jack's picture
Skagway Jack
Posts: 224
Joined: Oct 2013

Neil,

Very sorry to hear of your change of circumstances.  I have been absent from the forum for awhile due to work and personal travel.  I was disappointed to learn your current difficulties.  Though I met you only a few months ago, I appreciate your intelligence and wit.  I very much hope that you get a long term response that gives you a stable condition soon.  Best of luck, and keep the faith!

 

Jack

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

Many thanks for those kind thoughts, Jack.

But I do need to tell you that I am stable right now - thanks to Afinitor.  The latest CT-scan (a little over one week ago) showed no progression of my liver or lymph node mets.

Right now I am concentrating on stopping and then reversing the slow buildup of fluid at the base of my lungs and in my abdomen.  To this end I just started taking Avastin earlier today.  This is in addition to Afinitor.

Best wishes,

 

-Neil

twinthings's picture
twinthings
Posts: 409
Joined: Jun 2013

Good morning, Neil,

I haven't but a moment, as work is crashing down on me right now, but I wanted to log on right quick and check for updates on you.  Sounds like things are on a positive note, so I have every reason to believe Avastin will do the trick and stop the fluid buildup.  You were in my prayers this morning.

Try to stay relaxed and let these drugs have a fighting chance.  I think I can only imagine the coaster ride this must be but, keeping control of the coaster makes for a much smoother ride. 

Hope your day is great!!

 

Sindy

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

Sindy,

Thank you for such an upbeat message. 

Yes indeed, the Avastin is already working and I am feeling so much better.  Except, perhaps, for having to go pee every hour or so.  :)

Your prayers have certainly contributed to its success.

It has been a wild roller coaster ride but I am getting some much appreciated relief these days.

I hope all is going well with you and your family.

Best wishes,

 

-Neil

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