Sending special thoughts and prayers to Neil F. / Nanosecond

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. 

I am alive said:

Fluid in the abdomen

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. 

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 said:

Fluid

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

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 said:

Pizza crust

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

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

Djinnie x

NanoSecond said:

The road

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

Neil,

Keep up the fight and kick butt.

Icemantoo

danbren2 said:

You are so strong!

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

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 said:

Thank you!

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

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 said:

Afinitor can cause edema

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.

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

NanoSecond said:

Fluid

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

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 said:

Stable

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

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