Follow up to joint pain post & an interesting article

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Tim6003
Tim6003 Member Posts: 1,514 Member
in Head and Neck Cancer #1

Hello all.

As you all know I posted a thread recently about my worsening joint pain in my elbows and shoulder (in particular my right elbow, really quite painful).

I mentioned it to my regular oncologist around the same time and he said to take vitamin B to see if that helped and to take Aleve for the pain.  He also said on my next scheduled lab he would have a uric acid test ordered.

So Feb 21 just pass I was able to see a “visiting oncologist” from my cancer treatment center, (along with two other folks doctors / assistants in the room) they now make monthly trips to our small town and called and asked if I wanted to see this visiting oncologist up here rather than drive to Boise 100 miles south, to which I happily replied, yes!

So during my visit the visiting onco asks me how are things (they never read the charts do they) Sealed and I told her of my conversation with my regular onco and asked this visting oncologist how my uric acid looked (I had blood drawn 30 minutes before my appt as they requested).  She did not see a uric acid test request and then proceeded to ask a dozen questions at least.  

She then stated several things (try as I might to take mental notes, it was too fast for me).  1.  She said cancer cells can release secretions called (insert word here) that can often cause pain in the joints.  2.  She said cancer patients have to be closely monitored for spread to other parts of the body.  3. She used a big word that started with a “P” and that possible sounded like “polyu…..” (I have no idea what that is).

She then ordered quite a few tests to be completed another day, one for sure was an x-ray of the elbow and the other was a full blood profile. 

So today Feb 26 my wife gets a call from one of the three doctors / assistants in the room during my visiting oncologist appt and asks “why hasn’t he done the test we asked for yet”?Undecided

I found an interesting article on the web (I know, I know, we are not suppose to google anything) that was interesting, but I found no words this visiting oncologist used.  I’m still going to share with you all because that’s what we do on this forum.  We share so we do not feel alone in our quest to recovery, but we also share so that we can all be better informed and better educated to at least ask questions we might have not otherwise thought of.

www.nbcnews.com/id/26011251   

Oh, and just so everyone knows. I did share with this visiting oncologist all my activities I have been doing on a regular basis since September of this past year.  I told her about the hunting, cutting AND splitting wood (the old fashion way with an ax) as well as my recent new activities of hunting via snowmobile well in the backcountry.

She still said “you need to have these tests”.  So below is the link to the article I found interesting (I try hard to not post links that are not from accredited sites, but I am no doctor) and as I type this I tell you my elbow, forearms, especially the right elbow are quite painful (pain scale a 5-6) and I am going to have my tests done this week.

Other than that, I feel great, have lots of energy and just kind of wish the pain in the arms would go away so I can enjoy my activities a bit more, but the bottom line is I am thankful and not complaining for all I have.

Anybody with similar experiences or tests or knowledge of the words this doctor spoke of, feel free to share.

Tim

 

Sealed

Comments

  • Ingrid K
    Ingrid K Member Posts: 813
    #2
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    duh ?????

    Hi Tim,

    I must have woken up with less brain cells today as I re-read this post several times, and I just don't understand any of it.  Did the doc say what they are looking for with these tests ?   I would call their office and ask them to spell the words/tests out for me.

    Calling LongTermSurvivor !!  

    Hopefully you can translate and shed some light on Tim's post.

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #3
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    Ingrid K said:

    duh ?????

    Hi Tim,

    I must have woken up with less brain cells today as I re-read this post several times, and I just don't understand any of it.  Did the doc say what they are looking for with these tests ?   I would call their office and ask them to spell the words/tests out for me.

    Calling LongTermSurvivor !!  

    Hopefully you can translate and shed some light on Tim's post.

    Sorry it's so vague Ingrid ....

    I did ask her what specifically they were testing for and she hummed a bit about a direct answer but when pushed she said "cancer" ....but she quikcly added it is most likely Rheumatoid Arthritis or tennis elbow (I kind of looked at her funny as to why so suddenly would I have RA) and she then stated again to get the tests done and they would call me.

    I've been doing great as for feeling well, eating, not losing anymore weight or gaining weight ...and my lung scans that showed spots came back as just infection upon follow up ...so go figure.

    My share of this thread was more for just sharing and seeing if anybody else had the joint pain. I know you all give me a hard time (jk) about slowing down...but they said physical excercise is good for usTongue Out

    Tim

    Oh, and I guess they are looking at uric acid for "gout" (sp).

  • Ingrid K
    Ingrid K Member Posts: 813
    #4
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    Tim6003 said:

    Sorry it's so vague Ingrid ....

    I did ask her what specifically they were testing for and she hummed a bit about a direct answer but when pushed she said "cancer" ....but she quikcly added it is most likely Rheumatoid Arthritis or tennis elbow (I kind of looked at her funny as to why so suddenly would I have RA) and she then stated again to get the tests done and they would call me.

    I've been doing great as for feeling well, eating, not losing anymore weight or gaining weight ...and my lung scans that showed spots came back as just infection upon follow up ...so go figure.

    My share of this thread was more for just sharing and seeing if anybody else had the joint pain. I know you all give me a hard time (jk) about slowing down...but they said physical excercise is good for usTongue Out

    Tim

    Oh, and I guess they are looking at uric acid for "gout" (sp).

    R.A. ??

    I guess I would get the tests done.....why do they just blurt stuff out like that ?

    this was the visiting onc right, not your regular one....not that it matters, because you're right, they don't read your chart most of the time anyways.

    I know that I had some arthritis before C, but it sure has gotten tons worse since.

    I sure hope it turns out to be nothing other than you overdoing the lumberjack stuff.

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #5
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    Ingrid K said:

    R.A. ??

    I guess I would get the tests done.....why do they just blurt stuff out like that ?

    this was the visiting onc right, not your regular one....not that it matters, because you're right, they don't read your chart most of the time anyways.

    I know that I had some arthritis before C, but it sure has gotten tons worse since.

    I sure hope it turns out to be nothing other than you overdoing the lumberjack stuff.

    LOL...

    Yes, my "visting oncologist" .   I'm not making fun of her, she certainly was thorough.  What's funny is they tell you to report any and all new symptoms (I guess kind of like "you report, they decide") but when you report stuff you get that deer in the headlight look or tone like it's nothing from the treatments or not related.  I never say what I think or what I have researched on my own, I just report and wait for them to say something.

    I'm fine with what they tell me, but found it odd when I share the saaaammme stuff with this visiting oncologist that I shared with my regular oncologist she orders out the national guard and they are actaully calling me to see if I have done the tests!

    I like to think I have done a great job of not listening to that little voice we all hear at times when we get an ache or new pain / symptom, so I have been doing really well.  The visting oncologist even said my throat should not still be looking as red /swollen as it does this far out from rads, yet on February 6 my ENT did the scope and stuff and said everything looks good to him?  (my throat seems to come and go as to when it is swollen and red / raw feeling).  I of course attribute this to the new norm and the fact that I do breathe through my mouth often when outside doing the things I love to do in this 0-20 degree weather :)

    Thanks for the well wishes ...I'll keep you posted.

    Tim

    NOTE:  the article I posted mentioned joint pain as a symptom of lymphoma / leukemia ..so maybe she is checking for that??  Of course we all know joint pain can have a million reasons. :) ...but as is common sense, when you have had a cancer dx I guess you should be a little more astute about checking things out.

  • alligatorpointer
    alligatorpointer Member Posts: 131
    #6
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    Tim6003 said:

    LOL...

    Yes, my "visting oncologist" .   I'm not making fun of her, she certainly was thorough.  What's funny is they tell you to report any and all new symptoms (I guess kind of like "you report, they decide") but when you report stuff you get that deer in the headlight look or tone like it's nothing from the treatments or not related.  I never say what I think or what I have researched on my own, I just report and wait for them to say something.

    I'm fine with what they tell me, but found it odd when I share the saaaammme stuff with this visiting oncologist that I shared with my regular oncologist she orders out the national guard and they are actaully calling me to see if I have done the tests!

    I like to think I have done a great job of not listening to that little voice we all hear at times when we get an ache or new pain / symptom, so I have been doing really well.  The visting oncologist even said my throat should not still be looking as red /swollen as it does this far out from rads, yet on February 6 my ENT did the scope and stuff and said everything looks good to him?  (my throat seems to come and go as to when it is swollen and red / raw feeling).  I of course attribute this to the new norm and the fact that I do breathe through my mouth often when outside doing the things I love to do in this 0-20 degree weather :)

    Thanks for the well wishes ...I'll keep you posted.

    Tim

    NOTE:  the article I posted mentioned joint pain as a symptom of lymphoma / leukemia ..so maybe she is checking for that??  Of course we all know joint pain can have a million reasons. :) ...but as is common sense, when you have had a cancer dx I guess you should be a little more astute about checking things out.

    discussion about joint pain in another csn thread

    Here is a link to a csn thread where Hondo posted a comment about using Tramadol successfully for joint pain ... http://csn.cancer.org/node/140540

    I hope Hondo sees this and weighs in about it here.  From reading through the thread at that link, apparently joint pain is a common complaint post treatment.

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #7
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    alligatorpointer said:

    discussion about joint pain in another csn thread

    Here is a link to a csn thread where Hondo posted a comment about using Tramadol successfully for joint pain ... http://csn.cancer.org/node/140540

    I hope Hondo sees this and weighs in about it here.  From reading through the thread at that link, apparently joint pain is a common complaint post treatment.

    Thanks Alligator...

    Thanks Alligator .... I have heard joint pain is common among traditional chemo, but I have not heard if it is with Erbitux (what I had) ....and I wonder why the onco would act like it news to him if that was the case??  My regular onco anyway...this visiting onco as I said in the post ordered a bunch of tests ? 

    Thanks for the info...

    Tim

  • phrannie51
    phrannie51 Member Posts: 4,716
    #8
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    Tim6003 said:

    Thanks Alligator...

    Thanks Alligator .... I have heard joint pain is common among traditional chemo, but I have not heard if it is with Erbitux (what I had) ....and I wonder why the onco would act like it news to him if that was the case??  My regular onco anyway...this visiting onco as I said in the post ordered a bunch of tests ? 

    Thanks for the info...

    Tim

    I thought all side effects

    came a surprise to the Onc's and the Rad Docs....LOL.  So far, I've had damn little acknowledgement from either on what I know damn well are "side effects" of one or both.  More folks on here have what I see as common side effects, than get one of the Dr.'s attention.  They give me the blank stare like I'm weird, or pass it off to the "other Dr.'s treatment". 

    I tried to see if I could find the "poly....." word, but didn't have any luck.....

    p

  • josh r.
    josh r. Member Posts: 264 Member
    #9
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    arm and shoulder pain=frustration

    Hi Tim,

    I am sorry for all the frustration and pain that you are going through. I am fortunate to be a 21 year plus survivor who at times feels inadequite commenting on my brothers and sisters who are going through such difficult times with treatments that I am not familiar with. Fear, pain,and uncertainty I can definetly relate to for I live with them still and I probably always will. I try to fight off these feelings with faith, courage and love and these work most of the time. The fear subsides with the uncertainty as I am blessed with another day but the pain that you describe in your elbows, arms etc. does continue for me as well. The wonderful fact that you are "falling"trees and cutting them into units of heat and I am continueing with my activities and agricultural work is a pretty good sign that we are among the fortunate ones. I hear you Tim and wish all of us well. You are a wonderful example of strength through hard times. Thanks, josh r. 

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #10
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    A ventured guess

    Hi Tim,

    Just some thoughts based on your post. If they're testing for uric acid then they're thinking gout. It's a possibilty. I've had a couple of attacks over the last five years prior to cancer and it is quite painful....excrutiating actually. My attacks happened in my foot. 

    I've heard of joint pain from chemo. A friend who is a breast cancer survivor has joint pain issues. 

    I've had joint/arthritis issues for years in my shoulders, lower back and more recently in my knee. It was caused by weight training and a lower back injury/degenerative disc (L4/L5). Of course check with your doctors but I've had quite a bit of success with glucosamine/chondroitin/MSM complex supplement. It took a month or so of taking it and I felt a difference. It's a natural joint lubricator. The "popping" and pain in my shoulders when I lifted them disappeared and my lower back felt better than it did in years. I know it works as I've been off of the supp since my surgery (pills too big to swallow for now) and I'm starting to feel some discomfort again. 

    The fact that you're working out that arm and shoulder as much as you are in a repetitive fashion, could just be an indicator of arthritis. Chemo could be a contributing factor. The recent arthritis in my knee came on rather suddenly and was quite painful. I had some swelling and it was quite tender to the touch. Upon examination my primary physician said "Welcome to old age" ~lol~ Heck, I was 53 at the time for goodness sakes! Cold compresses helped to reduce inflamation as did tramadol. 

    I'm not familiar with what your doctor was saying but that's just my 2 cents worth. Hope they find out what's going on and help you with the pain.

    "T"

     

  • katenorwood
    katenorwood Member Posts: 1,912
    #11
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    You are very good with words !

    Hello Tim,

    I love the anology of the deer in the head lights lol.  Been there felt this way.  I can't express myself as well as you do my friend, but....there's a re-sounding loud voice in my head saying tell him KATE.  Tim YOU ARE YOUR BEST ADVOCATE !  If you don't understand what they are saying and the words are flying too fast and furious, put your hands up and say STOP !  The medical proffessionals may or may not get offended.  Tough for them, this is our lives !  I had a lung specialist throw a tantrum and leave the room, a few minutes later he was back.  Also, H/N patients especially after what we've been through physically and emotionally, have valid reasons why we go back in to these people.  Yeah like we don't have anything better to do with our lives ?  I pray this situation is as simple as minor arthritis......cause OA and RA hurt like heck.  Please keep us posted Tim, you are so inspiring and strong.    Katie

  • Grandmax4
    Grandmax4 Member Posts: 723
    #12
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    The gift that keeps on giving~~

    My surgeon told me when He did my surgery, ear to ear, that I would probably have some muscle damage because He had to move my shoulder muscle....this did not happen, I could raise my arms above my head the second day from surgery. Now, as of a couple weeks ago, I'm having some pain when I move my arm a certain way...it's not bad, but enough to drop my arm..I chalking it up to old age, 67 today...can't believe the years have gone so fast.

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #13
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    katenorwood said:

    You are very good with words !

    Hello Tim,

    I love the anology of the deer in the head lights lol.  Been there felt this way.  I can't express myself as well as you do my friend, but....there's a re-sounding loud voice in my head saying tell him KATE.  Tim YOU ARE YOUR BEST ADVOCATE !  If you don't understand what they are saying and the words are flying too fast and furious, put your hands up and say STOP !  The medical proffessionals may or may not get offended.  Tough for them, this is our lives !  I had a lung specialist throw a tantrum and leave the room, a few minutes later he was back.  Also, H/N patients especially after what we've been through physically and emotionally, have valid reasons why we go back in to these people.  Yeah like we don't have anything better to do with our lives ?  I pray this situation is as simple as minor arthritis......cause OA and RA hurt like heck.  Please keep us posted Tim, you are so inspiring and strong.    Katie

    Too funny..

    Phrannie..so true about what you said it's all a surprise to the docs...

    T thank you for that info

    Katie ...thank you for your nice comments and prayers

    Alligator ...I checked out that link...wow man, that pretty much covered a lot of info ....really good stuff

    Josh...thank you too for your input....

     

    If I missed anybody ...not on purpose...I always appreciate feedback from you all.  Did my tests / x-rays yesterday ...so I will wait and see.

     

    Tim

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #14
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    Grandmax4 said:

    The gift that keeps on giving~~

    My surgeon told me when He did my surgery, ear to ear, that I would probably have some muscle damage because He had to move my shoulder muscle....this did not happen, I could raise my arms above my head the second day from surgery. Now, as of a couple weeks ago, I'm having some pain when I move my arm a certain way...it's not bad, but enough to drop my arm..I chalking it up to old age, 67 today...can't believe the years have gone so fast.

    Happy B-day Grandma !!!!

    I hope it is a great day!!!!!

    Tim

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