update

NanoSecond

foxhd said:

coincidental?

I just don't know. When you read about complications from radiation and anti-carcinogenic medicine, pain is always listed as a potential side effect. But I have not been able to find anything that indicates where the pain might be. Is it limited to the primary cancer site? Or could the pain be anywhere? ..Neil, have you seen anything on this?..

One thing that I am clear on is that I was doing my regular exercise and running. I was working around the house and doing some painting. Nothing unusual. Then one morning I went downstairs to exercise. Suddenly I was unable to generate any strength. Exercises that I would do 10 repetitions of, were limited to only 2 reps! That is how fast it happened. The pain followed and I started on percocets.  It seems oncologists hear things that they can't always draw correlations to. Another of these, "Wait and see" things. So I saw a neuro surgeon and neurologist to rule out a disc injury. Which they did. MRI's had not shown anything at this point. A week or two later the dvt showed up and that is what we are carefully watching now.

What is the cause? Probably won't ever know. I guess we deal with this kind of thing alot. Aches and pains, dizzyness, weakness.Fatigue or insomnia. The list can be pretty long. We have no choice but to go with the flow.

Hmmm.

I'll try to look into this but it does not fully add up.  Usually radiation is adminstered to reduce pain.

However, one thing you might consider.  Both HDIL2 and anti-PD1, being immune therapies, may very well trigger some sort of minor auto-immune response at areas where you were injured in the past.  The pain may or may be associated directly with the exact location either.

I know that when I was in the anti-PDL1 trial at NIH I felt a minor diffuse pain in my upper right shoulder and back.  Sure enought, the CT-scan showed an injury I suffered decades ago - where I had dislocated my right shoulder.

aamdsi

Thank you

For being you Fox! You are an ispiration and ...a comfort, and a kick in the bum.

Just wish life would get easier for you!

Thank you

APny

aamdsi said:

Thank you

For being you Fox! You are an ispiration and ...a comfort, and a kick in the bum.

Just wish life would get easier for you!

Thank you

Nano's suggestion that it

Nano's suggestion that it might be an autoimmune response is very possible. But whatever the cause, hope it goes away and gives you relief.

foxhd

APny said:

Nano's suggestion that it

Nano's suggestion that it might be an autoimmune response is very possible. But whatever the cause, hope it goes away and gives you relief.

This may be

very likely. And therefore might last a long time. My poor wife will have to do all the snow shoveling this year. Thank god we don't live in up state New York. We have got our wood stove cranking. Did I mention that she stacked our 3 cords of wood?..and has been keeping the fire going.

mjl66

foxhd said:

This may be

very likely. And therefore might last a long time. My poor wife will have to do all the snow shoveling this year. Thank god we don't live in up state New York. We have got our wood stove cranking. Did I mention that she stacked our 3 cords of wood?..and has been keeping the fire going.

Thanks!

Thanks from a newbe! You as well as others give me hope that my husband can survive with cancer.  I hope he has the strength that I've seen in all of you. 

Hey, I live in Up State New York and yes WE ARE GETTING POUNDED!! My husband just came in after attempting to snow blow the driveway, and push our neighbors stuck car out of the road that hasn't been plowed all day, only to realize that he shouldn't have attempted it.

MJ

Djinnie

foxhd said:

This may be

very likely. And therefore might last a long time. My poor wife will have to do all the snow shoveling this year. Thank god we don't live in up state New York. We have got our wood stove cranking. Did I mention that she stacked our 3 cords of wood?..and has been keeping the fire going.

Last a Long Time!

We are all praying that won't be the case Fox! ... 3 cords thats pretty good going, I used to do my share of wood stacking, but hubby has worked alone this year. We have the woodburner going too, I love them so cosy! For your wife's sake I hope you don't have a deluge of snow this year, if it's anything like what's going on here, we already have signs of Spring!!

Djinnie x

Karen0074

Djinnie said:

Last a Long Time!

We are all praying that won't be the case Fox! ... 3 cords thats pretty good going, I used to do my share of wood stacking, but hubby has worked alone this year. We have the woodburner going too, I love them so cosy! For your wife's sake I hope you don't have a deluge of snow this year, if it's anything like what's going on here, we already have signs of Spring!!

Djinnie x

Wow

You are 1 amazing Fox, I think about how far you've come and your positivity on bad days. Mrs Fox is amazing too xx

 

alice124

First, let me apologize  to

First, let me apologize  to those of you not here 2-3 years ago and clueless about what I'm going to say, but  I want a  moment to reminisce with Fox.

Fox – remember long ago when Paula and I adopted the word soulnergy for this board?   It was a word we believed reflected the closeness and intense support and energy emanating from this board. Soulnergy reflected the light you found when lost and confused and in dire need of answers to "what next" questions.  Even though Paula and I were here for different reasons (patient/caretaker), we  felt the same way about the people on this board; we loved them. Fox, you were that soulnergy then and  continue to be to this day.  That—all by itself—is phenomenal, but then so are you. I just wanted to remind you of that with your current setback and pain.  

You’ve been Fox the invincible for so long, it's impossible to envision you any other way.  So get better please.  Know our strength is with you as yours has been with us.  

alice124

I am alive said:

Thoughts.....

Fox, is your current painful condition potentially reversible? Or are you just stuck with it?

I'm glad you spelled out this recent downturn. It was probably hard for you to unveil it. But I think it's important for us on this forum to also confront the really harsh stuff. While bolstering spirits and offering hope to the newly initiated is a highlight of the forum, us longer timers, the Stage4ers, have a lot of dark corners to peer into and find our way through. I am struggling with accepting the possibility that although I am feeling  great right now, a couple of nodes are growing - one is over 3 cm - and there actually may not be a viable treatment for me. The clinical trial I was in for 22 months - my first drug treatment - gave me heart failure & lymphedema!! (newbies,  note that these drugs really CAN BE toxic!) It's borderline to mild heart failure, which has almost reversed since getting off the drugs, but still......HEART FAILURE! ARE YOU KIDDING ME????? The heart sensitivity and lymphedema issues may prevent me from using other drugs, most of which are cardiotoxic. My kind of RCC doesn't respond to many of the available drugs to begin with.

 I had nothing wrong with me, other then asymptomatic kidney cancer, before the trial. And, even though the lymphedema showed itself a year into the trial, I felt like I pretty much skated through the trial, experiencing precious few of the usual side effects that derail most others. The heart failure didnt showed itself until the very end, by shortness of breath on exertion (walking uphill, rushing anywhere) and didn't SEEM like a big deal, until I heard its name. So I find it hard to get my head around the idea that I can feel perfectly normal and still be dead in six months, a year or whenever.Not that any doc has said that to me - we are currently in a wait & watch mode.

When our beloved Ron and others disappear overnight - from what, exactly? We'll never know. A heart attack or clot brought on by treatment drugs? - I gotta wonder if that's the way I will go. A lot of people on the smart patients site have died recently - well, 4 or 5 maybe. And that is jarring, too. Seems you can be doing your thing, feeling pretty good, then slide into steep decline. Boom. Just like that. Over and out in two weeks.

Am I bumming you out? Not to worry. Despite all this I am happy and still weirdly optimistic. Why is that? I don't know. Still cruising down DaNile? I don't think so. We humans, I think, are preternaturally programmed to survive, be hopeful, expect the best outcome. And that's a blessing. It's the right brain, left brain conundrum. On the one hand we know the facts, the stats and the probable end game. On the other, we cant imagine it actually happening to us, so we choose to hope that it won't. Not yet, anyway. We accept it. But we don't. We live a kind of schizoid life. Happy/sad. Then REALLY sad. Then happy again. So why not just turn up the music & rock on?

Peg (I am alive),

Great

Peg (I am alive),

Great post; thank you. Not a bummer, just realistic and  relevant. Addressing the issues is therapeutic for me forcing my brain to bring them to the surface rather than hiding them in my mind’s shadows.

 I too have followed the sad news on SP and find myself wondering WTF? John just got back from the cardiologist who is watching an aortic aneurysm (identified  last year). Happily no increase since last visit but still makes you wonder how it might be a factor in  the future.  And while John is feeling well, his last scan showed 6% tumor growth. This is the first growth in over two years. We won’t know if it’s the beginning of the end of his trial (nivolumab/votrient) until his next scan, but we’re praying it is just a “rogue” tumor and not an indication of overall progression. The next scan is on December 10 and should tell us something. He will not be tossed from trial unless growth reaches 20%.

 Anyway, sorry to be rambling. I’m just glad you addressed the issues so many of us were (consciously or subconsciously) wrestling with. Spot on.

foxhd

alice124 said:

First, let me apologize  to

First, let me apologize  to those of you not here 2-3 years ago and clueless about what I'm going to say, but  I want a  moment to reminisce with Fox.

Fox – remember long ago when Paula and I adopted the word soulnergy for this board?   It was a word we believed reflected the closeness and intense support and energy emanating from this board. Soulnergy reflected the light you found when lost and confused and in dire need of answers to "what next" questions.  Even though Paula and I were here for different reasons (patient/caretaker), we  felt the same way about the people on this board; we loved them. Fox, you were that soulnergy then and  continue to be to this day.  That—all by itself—is phenomenal, but then so are you. I just wanted to remind you of that with your current setback and pain.  

You’ve been Fox the invincible for so long, it's impossible to envision you any other way.  So get better please.  Know our strength is with you as yours has been with us.  

I've missed you Alice

But I have also been glad that you reached the point where you and John are living the best that you can. No longer needing to be here daily. Able to accept, and deal with each others health...How are you feeling? I hope being retired is working out for you. My wife has also retired so that she can be here for me and her mother who has moved in with us.

Boy, I miss Paula. I wish I knew about her. We were all awefully close. I sure loved you guys for that. It meant alot. Timing is everything.

soulnergy, I think our definition has to do with the type of Karma we generate. It has been missing here so I figured I would jump start it again.  We need people who will continue to relate like we did and share all these good vibes. Not just to come here, ask a couple questions and move on.

rainsandpours

foxhd said:

I've missed you Alice

But I have also been glad that you reached the point where you and John are living the best that you can. No longer needing to be here daily. Able to accept, and deal with each others health...How are you feeling? I hope being retired is working out for you. My wife has also retired so that she can be here for me and her mother who has moved in with us.

Boy, I miss Paula. I wish I knew about her. We were all awefully close. I sure loved you guys for that. It meant alot. Timing is everything.

soulnergy, I think our definition has to do with the type of Karma we generate. It has been missing here so I figured I would jump start it again.  We need people who will continue to relate like we did and share all these good vibes. Not just to come here, ask a couple questions and move on.

Oh Fox, so sorry to hear

Oh Fox, so sorry to hear about your pain .  Are they absolutely certain it's the clot causing it?  I've had random on/off shoulder pain and immobilisation for a few years.  I have a theory it's from surgical positioning.  They twist us like pretzels so it makes sense that the ol' joints rebel.  God, that pain is awful though.  Ugh.  You should ask for something better than Perc's though.  Demerol works well.

My bout of it last year was horrendous.  Couldn't open a door, hold a pen, or anything requiring function of right arm or shoulder.  And I'm right handed.  Sucked basically.  My original bout with it was a few years ago and I would scream in pain just turning my head.  They thought it was a torn rotator but me thinks it was my thyroid tumor pressing on the brachial nerve.

You're so incredibly strong.  Amazes me how positive you are.  I truly hope you feel better lickety split.

 

 

angec

foxhd said:

frozen shoulder

That was the first thing my oncologist said to me. Then I reminded her that I am the physical therapist. Not her. With frozen shoulder the shoulder joint loses range of motion. Not strength. Although strength loss is due to follow. Injury or trauma to the shoulder leads to immobilization due to pain. Then inflammation in the joint ligaments or" joint capsule" leads to some adhesions or scarring. This further reduces joint mobility. And pain with activity. As a result there is strength loss. It is a very painful condition. Therapists don't make many friends treating frozen shoulder or adhesive capsulitis. It hurts. Once mobility is returned, therapists are then appreciated by the patient. It can be a difficult thing to recover on ones own.  With frozen shoulder/adhesive capsulitis, assisted or passive range of motion is limited. Regardless of strength. If full range of motion is present, then it cannot be frozen shoulder. Maintaining my range of motion or "ROM" as we refer to it, was priority number one.  Shoulder motion is always goal number one. Once lost, it can be very difficult to recover. We worry about strength second. I have always told patients that regardless of what has happened to ones shoulder, they don't have a problem until they lose motion.

Fox, have you thought of

Fox, have you thought of going to  a chiropractor, or is that out of the question for you? Maybe a pulled muscle, ligament or a rib not where it should be? I am thinking this because of the way you describe how it happened, during exercise.  But you know best. I hope you feel better!

angec

foxhd said:

I've missed you Alice

But I have also been glad that you reached the point where you and John are living the best that you can. No longer needing to be here daily. Able to accept, and deal with each others health...How are you feeling? I hope being retired is working out for you. My wife has also retired so that she can be here for me and her mother who has moved in with us.

Boy, I miss Paula. I wish I knew about her. We were all awefully close. I sure loved you guys for that. It meant alot. Timing is everything.

soulnergy, I think our definition has to do with the type of Karma we generate. It has been missing here so I figured I would jump start it again.  We need people who will continue to relate like we did and share all these good vibes. Not just to come here, ask a couple questions and move on.

I was thinking about Paula

I was thinking about Paula the other day. Does anyone know her last name and where she lives? Maybe we can find out something about her.  TW always said he felt she wasn't still with us, but who knows?  I know in the past when she was down she would lurk the boards and come on after a short time away.  

 

Alice, sorry to hear that John has minor growth. Is is growth as in a new tumor, or is it growth on mets that were once stable? It is good that they let him stay on the trial until or if he reaches 20%. May that never happen.  Has he kept his weight on?  It is good to see you back on the boards, i come around when i can.  Mom had her last scan, NED last month for the first time. But now my brother 42 has thyroid cancer and my SIL is still with the uterine cancer and several close friends have it as well. It is constantly in front of me.    I hope John does well and the next scan is back to normal, maybe it is a freak thing or the test was messed up. Ya never know. I hope you are doing well, how are you feeling?

 

 

foxhd

angec said:

Fox, have you thought of

Fox, have you thought of going to  a chiropractor, or is that out of the question for you? Maybe a pulled muscle, ligament or a rib not where it should be? I am thinking this because of the way you describe how it happened, during exercise.  But you know best. I hope you feel better!

no ang

No chiropractor for me. This is a bizarre problem. Not from  exercise. I've been doing the exact same routine for years No muscle pulls etc..... I don't remember ever seeing  brachial vein thrombosis patient. Maybe  mastectomy patients. But that would have mostly been to deal with frozen shoulder issues. But I've seen dozens of deep vein thrombosis in the legs. The proper way these are treated is to disolve the clot to avoid it from traveling to the lungs or heart. Then it is an embolism. Death is likely. Unless I hear otherwise, this may  be what happened to Ron.

foxhd

rainsandpours said:

Oh Fox, so sorry to hear

Oh Fox, so sorry to hear about your pain .  Are they absolutely certain it's the clot causing it?  I've had random on/off shoulder pain and immobilisation for a few years.  I have a theory it's from surgical positioning.  They twist us like pretzels so it makes sense that the ol' joints rebel.  God, that pain is awful though.  Ugh.  You should ask for something better than Perc's though.  Demerol works well.

My bout of it last year was horrendous.  Couldn't open a door, hold a pen, or anything requiring function of right arm or shoulder.  And I'm right handed.  Sucked basically.  My original bout with it was a few years ago and I would scream in pain just turning my head.  They thought it was a torn rotator but me thinks it was my thyroid tumor pressing on the brachial nerve.

You're so incredibly strong.  Amazes me how positive you are.  I truly hope you feel better lickety split.

 

 

No R&P

I am not certain the clot is causing the pain. I had pain which showed no clots on previous scans and an mri. The clot showed up several months later. I don't know why I have a clot. But the brachial neuritis and brachial vein dvt are 2 different things. Kinda bizarre...Sometimes I say things for simplicity. If I said I take percs for relief, I actually take very few of them. I take oxycodone and oxycontin. They don't have the liver killer tylenol. Also take gabapentin which is effective for neurogenic pain.  I have had good results with dilaudid in the past. But the oxies are better when it comes to adjusting doses. I can always pop another one if needed. Easy enough. Tomorrow a friend is taking me out to see Junior "Guitar" Brown! I'll keep a pocket full of oxies. In case.

Last thing. Brachial plexus neuritis or Parsonnage turner syndrome can easily be mis diagnosed. It demonstrates symptoms of a disc bulge, rotator cuff tear, tendonitis or thoracic outlet syndrome. I saw both a neurosurgeon and neurologist who ruled them all out.

rainsandpours

foxhd said:

No R&P

I am not certain the clot is causing the pain. I had pain which showed no clots on previous scans and an mri. The clot showed up several months later. I don't know why I have a clot. But the brachial neuritis and brachial vein dvt are 2 different things. Kinda bizarre...Sometimes I say things for simplicity. If I said I take percs for relief, I actually take very few of them. I take oxycodone and oxycontin. They don't have the liver killer tylenol. Also take gabapentin which is effective for neurogenic pain.  I have had good results with dilaudid in the past. But the oxies are better when it comes to adjusting doses. I can always pop another one if needed. Easy enough. Tomorrow a friend is taking me out to see Junior "Guitar" Brown! I'll keep a pocket full of oxies. In case.

Last thing. Brachial plexus neuritis or Parsonnage turner syndrome can easily be mis diagnosed. It demonstrates symptoms of a disc bulge, rotator cuff tear, tendonitis or thoracic outlet syndrome. I saw both a neurosurgeon and neurologist who ruled them all out.

I'm glad you have the "good

I'm glad you have the "good stuff" on hand.  No one should suffer just because the docs haven't a solid answer for you.  My mom takes high doses of Oxy for her broken back and nerve damage.  It took her a long time to find the dosage that made her pain manageable and didn't leave her a zombie.  I really sympathize with chronic or acute pain sufferers.  Takes a strong constitution to keep on livin' with terrible pain that may never go away.

 

Thanks for that info about those various disorders.  I'm going to file it away for my next pain flare.

 

Enjoy your concert!

alice124

angec said:

I was thinking about Paula

I was thinking about Paula the other day. Does anyone know her last name and where she lives? Maybe we can find out something about her.  TW always said he felt she wasn't still with us, but who knows?  I know in the past when she was down she would lurk the boards and come on after a short time away.  

 

Alice, sorry to hear that John has minor growth. Is is growth as in a new tumor, or is it growth on mets that were once stable? It is good that they let him stay on the trial until or if he reaches 20%. May that never happen.  Has he kept his weight on?  It is good to see you back on the boards, i come around when i can.  Mom had her last scan, NED last month for the first time. But now my brother 42 has thyroid cancer and my SIL is still with the uterine cancer and several close friends have it as well. It is constantly in front of me.    I hope John does well and the next scan is back to normal, maybe it is a freak thing or the test was messed up. Ya never know. I hope you are doing well, how are you feeling?

 

 

Hi Ang,

Great to hear

Hi Ang,

Great to hear mom's NED. You certainly worked toward that for a long time, and it looks like your efforts and dedication have paid off. Hope you can work the same kind of magic on your brother and sister-in-law.

John has regained and maintained his precancer weight and basically feels good. In fact, his doc has told him "you've gained enough." And I'm not exactly sure of where the increase is in the tumor burden. I'm kinda hoping it was a misread or interpretation  error(s) by the tech reading it. I say that because when we first received the initial scan from Dr. Hammers everything was reported as stable. It wasn't until a couple weeks later we received the RECIST report that noted the 6% increase. We were shocked. Dr. Hammers doesn't know what to make of it at this point and wants to wait until the 10th before making assumptions. He mentioned a possible rogue tumor but I didn't see that on the scan so I'm not sure where that's coming from. We'll ask more questions on the 10th when we see what the next scan looks like. Keeping my fingers crossed there was a rookie tech behind the tech who overstated what she saw.

As far as Paula, several of us looked for her after she disappeared from the Board with no success ast all. She communicated with several of us privately up until a week before she vanished. We knew she wasn't doing great on the trial she was on. but she was a fighter determined to give her all. I don’t know her last name, but I seem to remember she was from the Atlanta area; Fox may have better recall on that. What I think I do know is her first and middle name was Paula June, and she was born on December 27, 1950, I know that because I referred to her at one point as my “little sister” and she corrected me saying she was my “big sister” (less than a month older).  Her name on the board was pjune127.

Take care Angie.

alice124

foxhd said:

I've missed you Alice

But I have also been glad that you reached the point where you and John are living the best that you can. No longer needing to be here daily. Able to accept, and deal with each others health...How are you feeling? I hope being retired is working out for you. My wife has also retired so that she can be here for me and her mother who has moved in with us.

Boy, I miss Paula. I wish I knew about her. We were all awefully close. I sure loved you guys for that. It meant alot. Timing is everything.

soulnergy, I think our definition has to do with the type of Karma we generate. It has been missing here so I figured I would jump start it again.  We need people who will continue to relate like we did and share all these good vibes. Not just to come here, ask a couple questions and move on.

I feel great Fox; thanks for

I feel great Fox; thanks for asking.  I have changed nothing in my life since the Leukemia scare except more frequent blood tests (3 x year), and,  other than an elevated white blood cell count and a few smudge cells, nothing seems out of whack. I love being retired and SO DO NOT MISS the politics that surrounded me when I did work. I didn't realize how ready I was to retire until I did! Hope your wife feels the same way.

Stay strong Fox. Soulnergy surrounds you.

 

P.S. Was thinking of your update and having it readily accessible. Couldn't you add it to your favorites in your CSN favorites or copy and paste it in your expressions area? Just thinking. . .

foxhd

alice124 said:

I feel great Fox; thanks for

I feel great Fox; thanks for asking.  I have changed nothing in my life since the Leukemia scare except more frequent blood tests (3 x year), and,  other than an elevated white blood cell count and a few smudge cells, nothing seems out of whack. I love being retired and SO DO NOT MISS the politics that surrounded me when I did work. I didn't realize how ready I was to retire until I did! Hope your wife feels the same way.

Stay strong Fox. Soulnergy surrounds you.

 

P.S. Was thinking of your update and having it readily accessible. Couldn't you add it to your favorites in your CSN favorites or copy and paste it in your expressions area? Just thinking. . .

Being retired

It is hard for my wife to sit still. She has never watched a movie in her life. No joke. So she hasn't sat down and put her feet up yet. She will probably go back to work when  her mother and I are gone. Me? I love not working. Office politics. Who could miss it?  But I live retired the best I can.  I only watch local news and important big news. .."and I like to sleep late in the morning,..I don't like to wear no shoes, making love to the women, while I'm livin, get drunk on a bottle of booze"..D. Bromberg......I try to do something every day. Figuring that after a few more years, I will have caught up on all the house and yard work. I live optimistically. Realistic or not. If it wasn't for this pain, I'd have a lot done. We work hard our whole lives to have a nice home. But work limits our time there. Now I enjoy my home full time. If I don't get something done today, there is always tomorrow, or next week. No rush. I'm retired!

We've become amateur detectives with the computer. Picking up clues about people.. Yeah, Paula was in the Atlanta area. I think I have a couple of her messages saved. She has never been back on board under her pjune name.  She told me how she just couldn't take the treatment they were giving her. You remember.  I thought of her a lot recovering from my Il-2 treatments. All I could imagine was her going through the same thing. If we had all lived closer, I think we could have helped her. I feel badly that we lost her. Where ever she is.

firedude21

I haven't posted for a while

I haven't posted for a while but I have been keeping up with the forum on a daily basis. As usual the fox is right on and I will try to be more of an acitive member.  I may have a slight excuse though. For the past few weeks I have been making numerous trips to UCLA in an effort to get into a trial. I've gone through two kidney biopsies, lab work, ct scan, MRI and EKG. If had a the needles that I've had stuck into me sticking out of me I'd look like a porcupine. I'm not complaining, just sayin'. The trial that I am trying to get into has three arms:   "A" is MPDL3280A (PDL1) + Bevacizumab (avastin)   "B" is PDL1 alone   "C" is Sunitinib  (Sutent). I am hoping to get into either A or B. I would think that they already have enough information on Sutent but maybe not. Anyway, that's what I've been up to lately. Anyone who has been through this process knows that much time is spent sitting in waiting rooms. I must admit that while waiting I checked into this forum many times. There are so many wonderful people here and the support and encouragment I have gotten here is unbelievable. Thank you.

I will post again when I find out if I am accepted into the trial and if so which "arm". If I am not accepted I believe that I will be starting on either sutent or votrient.

All the best to all of you.

firedude21