update

foxhd
foxhd Member Posts: 3,181 Member
in Kidney Cancer #1

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.

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Comments

  • nsb748
    nsb748 Member Posts: 89
    #2
    This is the type of thing I

    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

     

     

     

  • angelsnls
    angelsnls Member Posts: 67
    #3
    Wow foxhd that is one heck of

    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

  • foxhd
    foxhd Member Posts: 3,181 Member
    #4
    nsb748 said:

    This is the type of thing I

    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

     

     

     

    I mean I could

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

  • nsb748
    nsb748 Member Posts: 89
    #5
    foxhd said:

    I mean I could

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

    Very true
    It's a good thing

    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)

     

  • resistance2
    resistance2 Member Posts: 16 Member
    #6
    Thanks very much for sharing

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

  • danbren2
    danbren2 Member Posts: 311
    #7
    Thank You!

    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

  • donna_lee
    donna_lee Member Posts: 1,045 Member
    #8
    angelsnls said:

    Wow foxhd that is one heck of

    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

    High 5 from an 'Old Fart'

    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

  • angec
    angec Member Posts: 924 Member
    #9
    And Fox said he was going to

    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
    Phredswife Member Posts: 162
    #10
    Love you too Fox!!

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

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #11
    Well, I for one, Fox,

    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
    Positive_Mental_Attitude Member Posts: 454
    #12
    That is quite a story foxhd. 

    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
    I am alive Member Posts: 315
    #13
    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?

  • foxhd
    foxhd Member Posts: 3,181 Member
    #14
    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?

    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
    sblairc Member Posts: 585 Member
    #15
    foxhd said:

    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.

    2000 posts!!!

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

  • APny
    APny Member Posts: 1,995 Member
    #16
    sblairc said:

    2000 posts!!!

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

    I hope you get some relief

    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?

  • myoung790
    myoung790 Member Posts: 75
    #17
    You are inspiration to all of

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

  • foxhd
    foxhd Member Posts: 3,181 Member
    #18
    APny said:

    I hope you get some relief

    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?

    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.

  • Skagway Jack
    Skagway Jack Member Posts: 224 Member
    #19
    sblairc said:

    2000 posts!!!

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

    Dittos!

    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

  • Bellweather
    Bellweather Member Posts: 102
    #20
    Thanks for continuing to post

    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
    foxhd Member Posts: 3,181 Member
    #21
    Bellweather said:

    Thanks for continuing to post

    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

    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.

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