CSN Login
Members Online: 1

You are here

update

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

I think that all relatively new people aren't aware of some of our stories. I'll try to briefly do an update of mine.

I was a very fit 58 yo. Always played sports. I've weight trained since about 12 yo. I've been a runner since my late 20's. I've run several marathons including Boston and New York. I had picked up my training at 50 telling everyone that "When I died, I wanted to be in the best shape of my life." Little did I know......

In march 2011 I told my wife that I was beginning to feel like I was in my 30's again. That night I was doubled over in pain. Peeing blood full force. I was diagnosed as stage 3 and had my radical nephrectomy a couple days later. The pain was intense so there was no waiting time for me. Talk about a significant life change! But, however, I heard those glorious words. "We got it all." By october 2011 my scan showed mets in my nodes, lungs, liver, and bones. Enough to play both sides in a football game. I was told, "6 months." and there was nothing they could do. So I got another opinion. Then a third, and then a fourth. Same thing.

I tried again. Seeking Il-2 at the Smilow Cancer hospital at Yale-New Haven. I thought it was my only chance. Instead, I was offered a chance to participate in a new clinical trial of MDX-1106. I had nothing to lose. Besides, Il-2 would still be there to try. By spring 2012, 90% of my tumors had disappeared. I went from intense pain and barely walking while on constant percocets to resuming my weight training and running. I was becoming the poster boy for the newly named Nivolumab. What an awesome experience. I was on top of the world. Unfortunately I did have some minor tumor growth which meant I was pulled from the study. That stunk but protocol is protocol and I still had Il-2 to fall back on.

Il-2 is a highly toxic form of immunological therapy. It is usually done in an ICU setting.....by the way if anyone doubts the role of being physically fit, I would not have qualified for the trial or the interleuken if I wasn't so strong and healthy. I helped to keep myself alive....anyway, At Yale there is a unit dedicated to these intensive treatments whereas it is performed in icu's in most facilities. At Yale this drug is given twice a day for 5 days with a week off, then repeated. If after about 3 months there is improvement, the process repeats itself. Then we cross our fingers. Which I have been doing now since fall 2013. The few remaining tumors are small and have been stable. The drugs are still working for me. Incredible. I've been beating the odds. Somebody always does. Why me? don't really know. I am beyond lucky. The big message here is that you have to fight to stay alive. If one treatment fails you, then you must be alive for the next potential cure that is just around the corner. This is sooooo...important.

The clinical trial now called nivolumab may be the holy grail for clear cell renal cancer. It was an infusion every 3 weeks. Virtually no side effects. I got 18 months of heaven. Way too easy. It should be approved for renal cancer in a matter of months. I am thankful and proud to have been involved in this study. Our survival rates have just shot up.

Il-2 is not easy. As mentally prepared as I was, it pyschologically broke me. During my hospital stay I could not sleep. Or eat. All week. Explosive diarrhea. Constant vomiting or dry heaves. Peeling skin from toes to eye balls. This actually glamourizes the intense side effects without getting into just how severe they are. Inhumane and tortuous. After my 4th week of treatment, (which I could only tol. for a couple of days), I was discharged home. I had to beat the psychosis and it took a couple months. Completely broken. I was a pathetic sight to see. But I pulled through and got healthy again. My only cancer treatment from oct 2013 to now is a monthly zometa infusion to keep my bones strong. They don't give Il-2 again once you've been given it but I would go right back into the hospital today if they suggested it. I do believe that we can live through anything that they can do to us. I am fortunate and I know it. Thank you.

When fighting for your life, you take risks. After all why be conservative if your life depends on it. Who cares how many x-rays or ct scans you are exposed to if you are going to die. And I have had a ton of them. Over 20 ct scans in 2.5-3 years. Amazing. I have hair and teeth. As for the drugs,we'll see if they eventualy kill me. Everyday alive now is a gift. What ever the cost.

Maybe some of that has started. This past spring I began having pain in my neck that eventually involved my shoulder and arm. Nothing showed in ct scans or mri's. At first. More testing has shown a brachial neuritis. 90 % of my right upper extremity strength is gone. I also have developed a DVT or deep vein thrombosis in my brachial cephalic vein. So now it is long term coumadin. I can't afford a clot to break free. That could probably end things prretty quickly. I hope this is not what Ron went through.

So now I don't do too much. It certainly isn't safe to ride my Harley. It is difficult to drive. But lets here it for opiates. Because the pain is incredible. Everyday. For months now. Just something else in this journey started by kidney cancer. I have been on a long trip. Far away from, "Does surgery hurt?" or worrying about a 10" or lap scar. That is info best shared among the more recent cancer surgery survivors. I have more philosphical concerns. But anywho,....so goes the battle.

I have 3 years of posts. Some pretty involved regarding my treatments. I wish there was an easy way to pull them together. It all seems surreal. Maybe some new kidney patients would find my journey interesting. Maybe insightful and time saving. I won't be the only one . But I am here to share our stories.

One thing that may be of interest is my expectations and acceptance of this disease. 35 years of working in medicine as a physical therapist has given me a perspective most  don't have.  I have been a big part of the health care culture. I am familiar with the process and procedures of diagnosis, treatments, risks and outcomes. I know how to do research and find information. I look at death differently. I don't want to die, but I don't think I am afraid of it. Everyone dies from something. I now know what is likely to take me out. I accept it. I am happy to have found a doctor and health care team that I trust. I try not to second guess them. They know far more than I do about cancer. But I make sure that they know that when it comes to muscular skeletal or neurological issues they are in my house. There is a professional trust and I leave the complicated issues to them. I know they care about me. Now we hope for the best. Because until these issues clear up, I'll just stir up issues on the internet.

So, for most of you guys in their first year or two of treatment for kidney cancer, How you doin? Keep your mind open. This forum works best with interaction with others. The goal is to be here after 10 years like the old farts Donna and Iceman. Little details aren't so important. It is the long term big picture we chase.

.....any errors or discrepancies are unintentional and maybe the result of taking too many drugs.....

Share the Karma. Fox loves you. I've rambled way too much.

nsb748's picture
nsb748
Posts: 90
Joined: Feb 2014

This is the type of thing I come here to read

To sum it up...

I would say that there are four main points to this story that I keep in mind at all times. 

1.  Always be wary of "we got it all"

2.  Be your own advocate, and never settle when your health/life are involved.

3.  If you are small tumor/low grade, you are lucky and it could have been MUCH worse.

4.  If you are stage 4 and struggling, there is hope and it CAN get MUCH better

 

 

 

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

have said that in as few words. But it wouldn't have ben any fun.

nsb748's picture
nsb748
Posts: 90
Joined: Feb 2014

Very true

It's a good thing we have people like you to narrate these types of things, or it would be pretty dull.

I'm super analytical, so I think in bullet points.  (easy to type, not very exciting to read)

 

angelsnls
Posts: 67
Joined: Nov 2014

Wow foxhd that is one heck of a story, you are an inspiration to us newbies and as you said I hope that I am here as an old one in ten years time. I just found out today from my gp that my lung mets are shrinking but he told me that there has been reoccurrence where the right kidney was removed from I am scared now didn't know this could happen. I see the onc on 28th so hopefully get more info from him. Headaches are the worst side effect I am having on pazopanib (votrient) BP is very high so gp is trying to reduce it with meds.

Thanks for your story sending lots of love x

donna_lee's picture
donna_lee
Posts: 999
Joined: Feb 2009

Liked your story-hated the need to tell story.  So far, your outcome has been on the right side of the tracks.  I think our ages-iceman, too-have something to do with a resolution about life and death.  Yeah, we want to go with our boots on, being as active as we can.

Once there is a cancer diagnosis, the straight road starts taking a lot of side jogs.  Your first hand experience with two of the most successful drugs for RCC and the dialog you've opened has helped us all.

So sorry that your Harley is up on blocks.  As you know, I see lots of them riding US 101.  Wish I could see you ride by.

For myself, after taking the past few months to dig out of a really dark hole of depression and dealing with all sorts of tests, things are starting to look better.

Time to get back to work.   Hugs to the East Coast.

Donna

resistance2
Posts: 16
Joined: Feb 2013

Thanks very much for sharing the journey Foxhd, it really helps a lot of folks out there :), have a great holiday season.

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

Fox,

     Our timeline is almost the same, yours started in March 2011 and mine in October 2011.  I can honestly say that I was a mess before I found this forum.  I was so scared and had no idea what I was really dealing with except what I was told, which was I have Stage 4 Kidney Cancer, but when my right kidney was removed the Surgeon "was pretty sure he got it all"!  But even before the surgery I had to deal with pulmanary embolisms in the lungs, coumadin, and internal bleeding.  I thought it was the end of the world! Then I read some of your posts and realized that although nothing about cancer is good, I have only had to endure surgeries and nothing like what you or some of the others have been through.  It was these posts that have and are still helping to give me strength, hope, and faith!

    I am sorry we all have to be here, but I am very grateful to have others to talk to that are going through some of the same things that I am.  I just had my scans last Friday (Nov 14) and get my results this Friday, Nov. 21 and I can promise everyone reading this forum that scanixety does not get any easier with time! But, with the help and encouragement of others like Fox, Djinnie, Alice, Jojo, just to name a few, it does make waiting for results a little easier! Thank you all for helping me and others so much!

                                                     Love and prayers of good health to us all!

                                                     Brenda

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

And Fox said he was going to be brief? LOL  Fox, i have to hand it to you, you go above and beyond to help others not to be afraid. After I read your post, everytime, i am renewed and more confident about cancer.  Sorry that you cannot ride anymore and about the pain, but heck, can you still strum, eat pizza and sing? I bet you can.  Is accupuncture a thought?  I hope you can find some answers to work out that pain besides just opiates.  Praying for you! Sending hugs. ELF!

 

Angel, I am glad to see that your mets are shrinking.  That new recurrance they spoke about in the kidney bed. I just want to throw something out there. Not saying this is the case with you, but have a listen. My mom had her kidney removed. On her first scan they said she had to sites of recurrence, this went on for two further scans, however the recurrence was stable on the second scan even though she was not on any cancer meds yet.  It turned out that they were hematomas (blood clots from surgery).  They took a year to go away.  So, you might want to ask them if this might be the case with you.  Remember, always get a second opinion and always get a copies of all of your reports for bloods, scans, etc.

 

About your bloo pressure, they need to get a hold on it. My mom takes one pill in the morning, two in the afternoon (low dose) and one at night, this is working fine.  The high blood pressure usually indicates that the meds are working, so though it can take a while to get it under control, it might be a good thing. Praying all works out for you..

Phredswife's picture
Phredswife
Posts: 162
Joined: Apr 2014

Smile Thankyou for sharing and stirring us all up from our apathy. Wishing you well. Hugs Melissa xox

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

Well, I for one, Fox, appreciate your experience in story form. Yes, a lot to say for you right? But I do admire how NSB put it so succintly in bullet points.

I only knew bits and pieces of your journey, so now I can even admire and appreciate you more than I did before! I especially wonder how you found the fortitude to keep finding providers after so many gave you such a dire prognosis. Good for you!! And this new team must be learning so much from you as wel.

So, Fox, thanks for giving us a peek as to what you are enduring and surviving. It seems that going through these treatments are like a full time job!

Continue wellness, stability/improvemnt as you respond to life's lessons.. (dang enough sometime eh?).

Hoping you are finding things to smile about each and every day.

Sending you a warm smile from me to you!!

Gentle Hugs, Jan

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

That is quite a story foxhd.  Lesser men would have given up long ago.  Vigilance and diligence are important in a person's battle with cancer.  I feel lucky that my tumor was stage 1 and small. Thank goodness for my screwed up digestive system that caused a massive bowel obstruction in April that led to the CT scan that revealed my tumor. My Dad always said everything happens for a reason, and I'm glad the bowel obstruction cut my Spring vacation short.  I can only hope that my luck continues and that the worst I have to deal with is scanxiety every 6 monts for the next few years.  Keep fighting the fight.

I am alive
Posts: 315
Joined: Jul 2012

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?

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

I'm not too  optimistic about total reversibility. I've seen where it can be 3 years for a partial recovery. I will expect me to do better than that though. After all I am a physical therapist.  Having the pain subside is all I am asking for now. I'm really tired of taking drugs.....One of the ungodly problems I faced during my last session with Il-2 was heart failure. They kept asking, "Are you sure you've never had a heart attack?" I had the same problem with my skeletal muscles. My enzymes were pouring out like crazy. We know the surprised feeling.

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

Thanks for all you bring to us here, here's to 2000 more posts from FOX!!!!

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

I hope you get some relief from the constant pain. Do you think the brachial neuritis was caused by the chemo treatments or was it completely coincidental?

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

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.

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

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.

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

sblairc, Good catch.  Fox, keep on truckin! Hear Hear 2000 more! You are an inspiration to all of us here. 

 

My story....Just passed a year as a member.  I had a baseball sized tumour Stage 1b grade 3 removed in Oct, 2013. The folks on this forum helped me to deal with the aftermath of the operation and mental adjustments.  Specifically, Fox, Nano, Icemantoo, RonGS, Djinne and many others were always quick to respond and help.  Multiple follow up scans through 2014 and now on a yearly schedule for scans.  One of the hardest thing for me was the thought that I might never get my medical back as a pilot.  I managed to surmount that obstacle and I got my medical back and in the process maintain my professional life.  I promised to never take this blessing for granted.  As I continue my journey I will endeavor to take this wake up call and apply it to my life on a daily basis. If the C-monster returns I will be better prepared for him next time because of the people on this site.  Cancer dealt both of my parents fatal blows so I doubt that he is done with me.  In the meantime I will make my daily decisions count for something. 

I keep a hand written journal about my cancer experience.  some of it is pretty dry "just the facts mam" and some of it is personal journey stuff.  It doesnt get as much use lately as it did, because I am NED presently, but it is there before and after the scans and important milestones.  I think writing things down helps to crystalize ones thoughts.  Much of the darker stuff is not for those to see but just to get off ones chest without passing on to others.  My Mom used to say "if you dont have anything good to say dont say it"...so i write it in pen and ink instead. 

Now I am entering a new phase of my personal and professional life.  I have retired from one job and taken a new job which will give my wife and I a chance to be travel overseas more.  I plan to take full advantage of everyday given.  I will be here throughout all this though perhaps intermittently at times. 

Jack

alice124's picture
alice124
Posts: 898
Joined: Mar 2012

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.

myoung790
Posts: 75
Joined: Sep 2014

You are inspiration to all of going through.  Thank you for sharing your story.

Bellweather
Posts: 102
Joined: Jun 2013

Fox,

Your full accounts of your jouney through the halls of cancer care have helped us all along the way.  My sister is 66 and has never had Cancer.  On two occasions in the recent past she has had similar issues you have described regarding shoulder and arm extrimity strength loss.  MRI and CT's revealed no obvious cause.  She was diagnosed with 'frozen shoulder" or 'adhesive capsulitis".  She could not drive due to lack of strength to lift arm in position as well as visual focus issues with the eye on the side of the frozen shoulder.  She described the pain to me as almost fully debilitating.

I am sure you have looked at this diagnosis but thought  (hoped) it may be the cause and that the issue is not "C" related and would eventually resolve itself as my sisters issue did.  I am praying that your issues do in fact resolve themselves and allow you to carry on pain free.

 

Sincerely,

Bellweather

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

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.

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

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!

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

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.

aamdsi
Posts: 284
Joined: Apr 2014

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's picture
APny
Posts: 1998
Joined: Mar 2014

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's picture
foxhd
Posts: 3183
Joined: Oct 2011

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
Posts: 8
Joined: Nov 2014

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's picture
Djinnie
Posts: 945
Joined: Apr 2013

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
Posts: 64
Joined: Apr 2014

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's picture
alice124
Posts: 898
Joined: Mar 2012

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.  

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

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's picture
rainsandpours
Posts: 136
Joined: Apr 2013

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.

 

 

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

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's picture
rainsandpours
Posts: 136
Joined: Apr 2013

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!

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

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?

 

 

alice124's picture
alice124
Posts: 898
Joined: Mar 2012

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's picture
alice124
Posts: 898
Joined: Mar 2012

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's picture
foxhd
Posts: 3183
Joined: Oct 2011

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.

Alexandra's picture
Alexandra
Posts: 1309
Joined: Jul 2012
alice124's picture
alice124
Posts: 898
Joined: Mar 2012

Alexandra,

Thank you.  It's not what I had hoped, but  what I suspected.  Knowing for sure has lifted that gnawing ache that comes with uncertainty.   I can't tell you how many times I've unsuccessfully gone searching for her. Now I can finally put her to rest in my mind.

 RIP Paula. . .

 

 

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

So many of us tried our detective work and computer sluething with out results. You can probably find anything. How do you do it? I guess it really helps being smarter than me.

So sad. We were a tight little group. I think that I was pretty close to her. So it hurt when she finally sent me a message that said, "I can't do it anymore." And she left us without any more communication. I think that if we had lived closer to her, we could have helped. When going through the nastiness of my Il-2, I thought of her alot. I wondered if that was how badly she felt. She had family and friends but we all had something much more in common for offering suport.  I really miss her and still think of her often. Now we know.

Thanx Alex. By the way, I love you too. But you know that.

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

Alex, thank you so much for the information and the effort you put forth for us! Boy, did i have a big cry for the second time this week!  I see Paula died in April and it is not sitting with me too good. I am almost wondering if she took her own life. I know this sounds weird and probably not the case.  But she wrote to me the last time about four weeks before her death. She told me she was seeking out other treatment but just didn't feel like fighting. She was very discouraged, but at the same time she was encouraging me to go get check because i was having issues myself. She told me not to be afraid.  Her mets at the time was just a small spot or two. This brings me to question what happened to her. She was already off of the failed treatment for a few weeks by then. Tell me if I am wrong anyone who remembers.  So how did she suddenly pass away?  Questions that i know we won't find out.

Alex, how do you do it? How smart you are!  I didn't even see a mention of the JUNE part in her name. Thank you so much!  I wish i had your brain! I hope you are feeling well.

This brings me to a very important point.  I think that everyone on here is like a big family. Ok, we come and go, come and go.  But I think i am gonna stick around because i miss you all so much.  And, I want to be there for you all.  So, my point is that we need to have a secondary person to contact for each other. This way if we don't hear from someone for so long we can check up on them.  Or, each person designate someone to come to the boards to give us an update. Is this a good idea?  Can we start a link and leave our name and and alternate email addy or is there another way?  What does anyone suggest on what we can do?

About Ron, he texted emailed a few weeks ago saying the pain in his leg/foot was bad.  They did not know what it was.  He wrote on Sp that there were issues.  I mentioned the clot and he was supposed to find out. Since then i didn't see a post where he knew for sure what it was.  Neil, did you see any on SP from him confirming a clot?  Another mystery.  

Ron and Paula, two great friends will be missed....I don't know how TW knew, but he sure did have that feeling she was gone.

Alice, let us know what the doc says, i am thinking it is a marginal error.  Glad you are doing ok. Missed you!

 

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

No Ange.  I am afraid there was no further information on SP.  I actually emailed Ron (after he passed but before anyone knew it had happened) to try to get an update.

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

I think the buddy system, or getting a loved one to post for updates is a really good idea. It is hard hearing bad news, but it is even harder to hear the news late and to wonder and never know what happened to people we care about.

Food for thought.

And Foxy - you always have the gift of getting people to post. Thank you!

Hugs

Jojo

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

I try to get people talking. There has got to be more to talk about besides how long our scars are. Love ya, Jojo.

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

I jad been wondering about Paula for sometime also, and had asked about her from time to time and noone knew anything.  So sad to see she has passed on.  RIP Paula.

 

 

 

firedude21
Posts: 52
Joined: Sep 2014

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

 

alice124's picture
alice124
Posts: 898
Joined: Mar 2012

Will be thinking of you while you wait; know that's tough. Once you find out, I hope you start a new thread under the trial name so it doesn't get buried under this thread.  Good luck firedude! Keeping fingers crossed. . .

jason.2835
Posts: 337
Joined: Nov 2014

Fox,

The one things that strikes me about your posts is how genuinely you seem to squeeze the most out of each day... it's a beautiful thing to see and should be a benchmark for those who are ailing psychologically about a recent cancer diagnosis.  

Being a new member and new cancer survivor (One month tomorrow from surgery), I didn't find this particular forum until after my surgery had happened.  I'm not sure why my constant search engine burning didn't take me here, but I wish it had.  The 45 days between MRI results (which featured the first mention of the word "carcinoma") to my surgery are still like a stressful fog for me.  I told my wife a few days back that I have trouble even remembering some of what happened during that time; my mind was on a whole different planet as I struggled to make sense of my sudden medical dilemma.      

I wish I'd found people like you earlier, Fox.  People who have been THROUGH IT and come out on the other end with an appreciation of life that no one can take away.  It's damned inspiring, forgive the language.  I'm not one to talk, having had a (so far) relatively easy ride, but I know that in my limited knowledge I could never even imagine to be able spread the amount of hope and courage that you do, sir.  You're the man.  It's not every day that we can use that phrase and actually mean it; in this case, it's the total truth. 

Pages

Subscribe to Comments for "update"