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Arthritis vs. Bone Mets

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  • [Deleted User]
    [Deleted User] Member Posts: 344
    edited December 2009
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    Barbe, I'm really sorry to hear about the pain.  Okay, I know this sounds crazy BUT can you take tumeric aka curcumin?  It's a cox2 inhibitor but does not have the SEs of Celebrex.  If you want more info I can guide you to another site.

  • [Deleted User]
    [Deleted User] Member Posts: 344
    edited December 2009
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    kmmd, so far so good.  My family was here for Thanksgiving and I lived through it...LOL  The came on Wednesday and left Sunday.  I was POOPED!  But that's nothing new for me after the visits.

  • barbe1958
    barbe1958 Member Posts: 7,605
    edited December 2009
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    Oh, I'm staying off the iron for sure! That was a pain I could feel right in my bones....this one is a "soft tissue" pain....like what I imagine a sucker-punch to the kidneys would feel like.

  • barbe1958
    barbe1958 Member Posts: 7,605
    edited December 2009
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    Shirley I used to take Bextra which was a WONDERFUL Cox2 inihibtor! I was driving to work when I heard it was pulled off the shelves. I called my pharmacy and asked them to fill everything I had left for it (they hadn't heard yet). I asked if they had a lot and she shook the bottle and said tons! When I went to pick it up she gave me a bit of a dirty look and said she couldn't give it to me. How the heck do we hear first on the radio before the pharmacies do?

    As for tumeric, what form do I take it in? I'm game for anything as long as it doesn't affect my heart, which apparently Bextra would do.

  • [Deleted User]
    [Deleted User] Member Posts: 344
    edited December 2009
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    Hey, Barb.  I'm going to give you the links to the site.  I think we have to get permission to use his material. 

    Gina (Nosurrender) started this site.  Constantine (Edge) used to post here a few years ago until someone said something to him which insinuated law suits.  He's smart and does a lot of research.  He has his own website full of info.  If you ever need to ask Edge a question he will answer it when he has time.

    On the second link it will tell you what kind of Curcumin or Tumeric to buy.  Bioperene is need to absorb well.  However, I believe I've read not to take more than 15 mgs of Bioperene.  So, I bought some with and without.  I take the "without" with the "with"...LOL  I'm trying to increase my dosage after this stupid progression.

    At the end of his post you can click on his link and it will take you to his own site.

    Hope this is helpful. 

    Celebrex+curcumin? - No Surrender Breast Cancer Foundation by Survivor ~ for Survivor Message Forum

    http://www.nosurrenderbreastcancersurvivorforum.org/post?id=3795684

    Edge-CAM V2.6 [New: 9/6/09]

    http://www.nosurrenderbreastcancersurvivorforum.org/post?id=3654841

  • barbe1958
    barbe1958 Member Posts: 7,605
    edited December 2009
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    Okay, now I'm totally stumped! My PCP just phoned and told me that my iron is too LOW! He is actually calling in a prescription iron treatement for me. How could this be? I have no idea now....sigh. I told him my hip joints have felt better, but he thinks it could just be that I'm not in a Fibromyalgia flare right now. Weird.....

  • hrf
    hrf Member Posts: 706
    edited December 2009
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    barbe, sorry to hear about the iron thing. When I still having periods I was frequently anemic and at one point, I even had iron injections. I don't blame you for being frustrated with all this. Hopefully you will continue to be pain free. .....maybe it's time to eat more spinach?????

  • candie1971
    candie1971 Member Posts: 2,467
    edited December 2009
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    wowo Barb, that just happened to me. I went to give a pint of blood for myself for my surgery and the nurse said it would be low after the pint. Sure enough...My PCP did an iron workup and all came back ok. 2 weeks later I was supposed to give another pint, my DD's GF came to give for me as she has the same blood type. But when we got there, my hemoglobin was up again si I gave for myself which is always better. I idid take some iron pills but it give me diarrhia. HRF yes, spinach is good and I love it!!

  • mmm5
    mmm5 Member Posts: 797
    edited December 2009
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    Can I ask you ladies that do take Tumeric (curcumin) if that indeed does help pain, any other wisdom you can give on this supplement would be greatly appreciated.

  • candie1971
    candie1971 Member Posts: 2,467
    edited December 2009
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    Hi..what news I have:

     My PCP never got anything from the surgeon about my upcoming surgery. when I went to her for a medical release she was hesitant because she does not think I need a hip replacement, she feels it is a labral tear. She urged me to go for another opinion..I did..last night. The new surgeon said I have a labral tear...he is almost positive. He is sending me for hip arthrogram (with contrast) and 3 phase whole body bone scan to get the correct diagnosis and then we will talk about it from there. He doesn't think there is any cancer there but the bone scan will verify that. He is suprised the other 2 orthopedics didn't do these tests. He said I have minimal arthritis and can't see where I need a replacement just by the tests I have had done. so I will keep you informed... :)

    hugs and prayers

  • barbe1958
    barbe1958 Member Posts: 7,605
    edited December 2009
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    Oh Candie! I was so worried about you that I even talked about your situation with another bco member. I was wondering that the diagnosis for replacement was made on your "gait" and not backed by x-ray. I was excited for you to be out of pain, but the rehabilitation period might have been worse. Please keep us posted! Now I have to ask Dr.Google what labral tear is....

  • candie1971
    candie1971 Member Posts: 2,467
    edited December 2009
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    Thanks Jo and Barb. Yep, I was online yesterday looking up labral tear too...lol.

    I will post more later. I have a hectic day today...my dad , who is 86, a a couple of small strokes yesterday He is in hospital. Please keep him in your prayers. Thanks

    hugs andprayers

  • barbe1958
    barbe1958 Member Posts: 7,605
    edited December 2009
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    He is in my prayers now Candie, please keep us posted!

  • candie1971
    candie1971 Member Posts: 2,467
    edited December 2009
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    Thanks Barbe.

  • [Deleted User]
    [Deleted User] Member Posts: 344
    edited December 2009
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    Wow!  Candie, I'm with the other ladies.  Amazing!  And your PCP caught it and wanted you to have another opinion.  I'm really looking forward to your update.  Will be praying for your father.

    Shirley

  • candie1971
    candie1971 Member Posts: 2,467
    edited December 2009
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    Shirley ..yes, I am so glad my PCP is usually on top of thing...thanks for your prayers

    Jo, my dad is 86

    so far 2 CT scans and no damage to my dad. they are gonna do an MRI tonight to see how that comes out. They say he can probably go home Monday. He is driving us all crazy cause he wants to go home!!!

  • whoopsiedoodles
    whoopsiedoodles Member Posts: 224
    edited December 2009
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    Ladies,

    I haven't been on this thread for ages, but I wanted to share something.  I can't remember if I shared with you the ever-nagging fear that I am always terrified of bone mets (because I have chronic pain, can't tell the difference between bone or muscle pain, have arthritis everywhere, and like so many of us, have everything wrong with my body). 

    Well, at some point (I believe it was January), I started voicing several concerns.  Amongst these were digestive issues (turned out to be colon cancer), a pain in my belly that completely mimics the feeling of an ovarian cyst (wait till you hear what it really is), and a suddenly gigantor belly (I was told to stop eating fatty foods, I was told edema, post-op changes, and to do sit-ups.  Argh). 

    When I went to the doctor my friend insisted I go see, he immediately knew I had NO belly muscle (because it had completely torn apart). Problem solved.  (PS-this has been a growing issue since April). 

    I mentioned the dull pain in my pelvic area, he ordered an US as well as a PET scan (my first PET scan in 4.5 years.  All my docs insist it ruins quality of life because you worry if something shows).  Well, results came back saying my right ovary was fine (AND no cancerous warning signs WHATSOEVER!!!!!!!!!!!!!!). 

    Hmmmm......I was convinced there was a cyst there.  No cancerous warnings?!  What could it be, then?!?!??  I can't have arthritis in my ovaries....I know I have arthritis in my hips.....what the?.......

    Well, side note....I had been playing a lot on the Wii Fit and getting more active last year.  My knee had begun hurting so intensely I could NOT walk at all. I drove myself (yes, with a leg that was putting me in misery) to the ER and had a Doppler done (I was told I was FINE!  "You're FINE!  Take some NSAIDS!"

    Knee felt better, dull and maddening ache still there. 

    Now, present day.......I had gallbladder removal and basically a complete stomach reconstruction with lots of hernia repair.  As I was in the hospital, I was noticing that my leg was hurting like a mo-fo.  I asked what a blood clot felt like (as I wriggled uncomfortably in my hospital chair).  I was told it would feel hot, and look swollen.  I was told I would be in such bad pain I would not be able to walk. "Umm.....nope.  I can walk...." 

    Two days after such charades, my nurse listened.  I had a blood clot.  Fooey. 

    Well after finally getting released from the hospital, I called the doctor one morning to ask about the type of pain I was feeling.  As I talked to the nurse, she began to mutter to herself.  "Blah blah blah......superficial DVT behind knee.......bzzz bzzz bzzz......an even deeper clot in your groin......hootclick hootclick hootclick.......extensive clots nearly closing off the vein completely." 

    The moral of my story?  I was ultra-aware of my discomfort, I spoke up to a large number of doctors about these problems and not one of them made a connection to consider I could have clots.  To add insult to injury, btw, I have my clots because of a hereditary mutation.

    Anyway, I understand that it can be very difficult to dx a clot, I just wish that people in the cancer community would not only be trained to worry about/consider bone mets vs. arthritis.  With my story, I considered both, was told it was fine, and my blood clots just kept on growing. 

    I hope my story made some sense.  I've been trying to type this for quite some time, but my son keeps talking to me.  As if I don't lose my train of thought enough, already!! 

  • candie1971
    candie1971 Member Posts: 2,467
    edited December 2009
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    wow..blood clots....mmmm....I tell you, this medical stuff will drive me crazy....so what are they doing for the clots...are u ok?

  • [Deleted User]
    [Deleted User] Member Posts: 344
    edited December 2009
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    I don't understand some of these "medical" people.  After surgery seems like they should check symptoms for clots. 

    My friend's mother had heart bypass surgery several years ago (in her 70s).  My friend took very good care of her mom..she walked with her..did the exercises with her..everything.  A nurse would visit the home to check on the mom.  Mom was having pain in her leg...nurse said to keep exercising...complained about pain many times....nurse says to continue walking.  FINALLY, she was dxd with a clot and her foot is still swollen some to this day.

    On the other hand, my dh fell down a couple of steps on the front porch July 4th while watching my son-in-law do the fireworks.  My dd and my gks were sitting on the steps which did not give dh very much room to walk down.  I suppose he missed the last step.  Anyway, he messed up his knee and the top of his foot (ankle).  Our primary care doc had passed away unexpectedly (still cannot believe it).  I could tell his foot and knee was infected...foot red and swollen and wounds looked gross.  Anyway, we went to a walk-in clinic.  I have to say they took very good care of my dh.  He could BARELY walk.  Anyway, I think it was about two weeks after his fall he told the PA that his calf was hurting a little.  He thought it was due to the way he had to walk WHEN he walked...LOL  He was in the wheelchair when he'd go to the clinic.  Anyway, the nurse looked at him and said we need to take some more blood.  Well, low and behold she said the blood work showed he could have a blood clot.  They IMMEDIATELY sent him to the hospital for the doppler..and made HIM PROMISE to go there immediately.  I wasn't with him..was cleaning for my dd who was arriving.  Sure enough he had a clot.  He's still on Coumadine and will be off of it FINALLY in January.  Also, he was on an injection, Lovenox, that we did at home to the fat ole belly.  I can't remember how long...about 2 weeks.  He finally got a new doctor.  The doctor said that typically in a trauma they do the injections for the period of time he was on them.  He said that about six months of coumadine also.  And, that should take care of the clot.

    BUT HOW DO WE KNOW IT'S GONE?  As far as I know they won't be doing an ultra sound to find out.  I am grateful that the PA knew what she was doing.  However, being a trauma and his foot was still swollen and red (had celluitis too) she probably knew the symptoms could be a clot.

  • whoopsiedoodles
    whoopsiedoodles Member Posts: 224
    edited December 2009
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    Candie-Yes, I did have colon cancer (sorry, I didn't elaborate because I stupidly assumed the zillions of members here at bc.org knew that.  I really do have to remind myself sometimes that I don't actually "know" everybody here.  Sorry once again!).  It was in April.  I was feeling crappy, docs weren't really looking at the big picture, so I fired all of them and went to the PCP my hubby was going to (because it was on the way to his office, which is an hour away). This doc listened, and he listened well.  He had me do the fecal "poop stick" test, told me the next day I was definitely positive for blood, sent me to a gastro doc who did the endoscopy and colonoscopy, and my surgery was scheduled IMMEDIATELY because I had a pretty big polyp.  I was told the first biopsy was b9, I was told the initial pathology was b9, and finally, the following Monday I was told I had colon cancer. 

    It was stage 1, grade 1.    I wasn't stunned.  I didn't even cry.  I knew it was going to be cancer, just like I knew it was going to be MS, ovarian cancer, breast cancer, and, well, I knew I had a sleep disorder, but it is tentatively dx'd as narcolepsy/cataplexy.  I thought I was an insomniac, because I either avoided bedtime like the plague, or when I tried to sleep, I couldn't.  So, I'll give myself a partial point. 

    As an aside, the only dx. I've received that has shocked the heck out of me are the blood clots. 

    Jo-I am okay, just a nervous wreck (imagine the fear of breast cancer dx.  It's just like that!).  I had to take several days of shots (Lovenox) in my belly, and take Coumadin for the next year. 

    I get to wear compression stockings (just like Mama from MaMa's family).  I will wear these little beauties for life, as I now have some syndrome....can't remember the name of it! 

    Did I say this next part in the original post?  I can't look because my cat is sitting on both my laptop and I  as I type this and I am trusting the words are showing up on the screen because I can't see.  An amazing blessing in all this burden is that the clots were actually pretty major and extensive and had been growing for some time.  My vein in my leg was almost completely closed. 

    The horrible pain that had been labeled anything other than DVT could have killed me, because I had no idea it was there.  Not only that, I know now that I have Factor V Leiden.  My length of Coumadin therapy has been extended to a year as a precaution.

  • barbe1958
    barbe1958 Member Posts: 7,605
    edited December 2009
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    Jo, be careful. Nexium elevated my liver enzymes (Gamma GTs) so much that my PCP (at that time) accused me of alcohol abuse and we had a huge fight as I hadn't had a drink in over a year and he fired me!

  • candie1971
    candie1971 Member Posts: 2,467
    edited December 2009
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    Boy Whoopsie, what  a ride you have been on...hugs to you!!

  • barbe1958
    barbe1958 Member Posts: 7,605
    edited December 2009
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    Jo, it didn't take long to show up. My liver has been compromised by Tylenol. I used to take 12-14 Extra Strength Tylenol a day! (my stomach can't take aspirin) My doc at that time wouldn't give me anything for my Fibromyalgia pain...he told me it was all in my head!

    I don't know if my liver has repaired itself or not, but when I was in the hospital for a week in July after kidney stone surgery, the doc did tell me that they looked awfully hard at my liver before they found the kidney perfusion defect on the CT. So I feel pretty comfortable that nothing bad showed up or they would have used that as an excuse for my extreme pain.

    I'm pretty sure that LFT bloodwork has to be done pretty regularily with Nexium.

  • whoopsiedoodles
    whoopsiedoodles Member Posts: 224
    edited December 2009
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    Hi ladies,

    Quick note.....I don't think I mentioned in my post (can't look because my son and his little friend are running wildly so it's too hard to concentrate!).  Forgive me if I repeat....

    For the last 4.5 years I've been told that my liver is enlarged and has cysts on it.  I've also been told my spleen is enlarged.  I take Shaklee supplements and was encouraged to take Milk Thistle.  I did (for nearly a month), and when I read my surgeon report it said that my liver was completely normal in size and had NO lesions/cysts AT ALL.  My spleen was normal as well. 

    Once I am done with Coumadin, I am back to my supplements! 

  • barbe1958
    barbe1958 Member Posts: 7,605
    edited December 2009
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    I, too, am very cautious about herbal supplements. When my Dad was dying of cancer in a world-reknowned cancer centre there were posters all over the hospital begging patients to tell their doctors about any herbal supplements they were taking due to contra-indications with conservative treatments! That was an eye-opener.....

  • candie1971
    candie1971 Member Posts: 2,467
    edited December 2009
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    Always interesting facts found here.

    My dad is doing better and he is home. No effects from the strokes. Thank God!!

    I go for my whole body 3 phase bone scan tomorrow.I sure hope they don't find cancer anywhere.Well, we always have something to worry about , don't we!!  I am grateful my dad is ok.

    have a great day, friends.

    hugs and prayers

  • candie1971
    candie1971 Member Posts: 2,467
    edited December 2009
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    Thanks, Jo!

  • whoopsiedoodles
    whoopsiedoodles Member Posts: 224
    edited December 2009
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    Ladies, I spoke with my pharmacist (whom I trust completely) and he said that milk thistle is perfectly safe with ALL my medications.  I don't take any supplements right now, I just want to get used to coumadin.  Before this crap of a clot, I took milk thistle, cinnamon, and omega 3.  I wavered on taking red yeast rice but I love grapefruit and could not take the supplement if I wanted grapefruitt for breakfast!  The cinnamon and omega 3 (and red yeast rice) were all to help my teetering on the verge of becoming diabetic.   I took it religiously and my blood sugar was cut in half, my triglycerides became normal, and my cholesterol lowered quite a bit (still a bit to go). 


    Trust me, I am not one to go to the Herbalist or the Accupuncture clinic and talk to the elderly chinese herbalist.  Why?  I tried to do that and HATED IT!!!!! 

  • barbe1958
    barbe1958 Member Posts: 7,605
    edited December 2009
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    Aha! Grapefruit is one of the most dangerous foods that interacts with a TON of medications! It either cuts their efficacy or multiplies it!

  • candie1971
    candie1971 Member Posts: 2,467
    edited December 2009
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    Oh,Barb, I so love grapefruit. But I can't have it cause of a few meds I take....oh, I miss a nice juicy grapefruit!! Too bad, huh!! why is that, I wonder<