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artsyamerican
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Posted: Sun Oct 25th, 2009 02:38 am |
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I just found a link to this site from Cancer Compass - how awesome. For 2 years now I have complained with rib pain, lower back pain, and fatigue. After searching, searching, searching, on the Internet..I came across the symptoms of Waldenstron's disease. My PCP at the time thought I was nuts when I begged him to order a SPEP. To make a long story short...I have MGUS (IGG Kappa)- very low risk according to Moffitt in Tampa. They performed a BMB and FISH. Bone scan was normal. MRI of spine showed degenerative disc disease in L4 and L5 but absolutely no evidence of lesions. 24 hr Urine is always negative but spot urine was positive for Bence Jones. The other morning I got out of bed and felt something pop in my back. I've been in excruciating pain since. My GP gave me prednisone but I quit taking it - I am a teacher and feel I'm getting sick - sore throat, ear ache...etc...
Side bar comment: In 1982 I was exposed to high levels of toxins while living at Tarawa Terrace base housing aboard Camp LeJeune, N.C.
Question: If all I have is MGUS and RA tests have come back negative in the past...what on earth could be causing this severe bone pain?? I've been told on countless occasions that MGUS is symptomless!! Any clues? My doctors have all become very hostile toward me because I won't let this go. Maybe I need a psychiatrist!!
Last edited on Sun Oct 25th, 2009 02:40 am by artsyamerican
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Posted: Mon Oct 26th, 2009 09:49 pm |
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Hi,
You’re certainly asking the right questions. All your bone pain and the fact that you felt a pop in your back the other day would, at first glance, seem to indicate that there’s a very good chance you’ve progressed to multiple myeloma. And you are correct about MGUS; it should be asymptomatic.
How long ago did you have your MRI? Could the results be outdated? We’d recommend a PET/CT scan and an MRI not just of your lumbar spine but also of:
--the skull,
--whole spine (if you only had the lumbar spine scanned),
--sternum and proximal clavicles,
--shoulders and humeri,
--pelvis with upper femora.
Also, what are your serum free light chain results?
It’s really important to know if you’re progressing because, if this is the case, you’ll need to get treatment. It’s to your benefit to start treatment soon if it’s needed.
One of our myeloma specialists at Huntsman Cancer Institute would be glad to help you. If you’d like to make a clinic appointment, you can e-mail myeloma-web@hci.utah.edu or call 1-800-664-8268.
Please let us know if you have any other questions.
Take care,
Chat Moderator
Huntsman Cancer Institute Myeloma Clinic
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artsyamerican
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Posted: Mon Oct 26th, 2009 10:10 pm |
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Hi! Thank you for your reply!!! I was beginning to worry no one was out there! LOL. My last free light chain was 4/8/2009 and the free kappa serum was 11.2, the free lambda serum was 11.5, and the K/L Ratio was 0.97. Before that it was free kappa serum 16.10, free lambda 13.6, and K/L Ratio was 1.19 on 10.03.08.
The MRI of my spine was done on 4/2/09 - it was w/wo contrast. A total bone scan was done a month ago and no lesions were present.
I would love to get a second opinion but I don't think I could afford the trip to Huntsman at present. What do you think I should do? The Dr. I saw at Moffitt was supposed to be one of the best...so my family thinks I'm off my rocker to even still be pursuing this! Like I want to be sick! Ughhh.
Amy
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Chat Moderator
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Posted: Tue Oct 27th, 2009 01:40 am |
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In our opinion, bone scans are not very informative if you're looking for myeloma. They are not very sensitive for lesions, which is why we generally don’t use them and it’s possible something is being missed. In our experience, patients can have several lesions but still have a negative bone scan.
So, we’d still recommend getting a PET/CT. Also, an MRI of more than just your spine.
As for your serum free light chains, they are indeed consistent with MGUS. However, this does not rule out the possibility that you have myeloma.
I would follow your instincts with regard to getting a second opinion and do what you feel is right for you. If you are worried that something is not being caught (which I think is a very legitimate concern given the situation you are in), then it can’t hurt. The amount of pain you are in is just not normal, so it’s important to get to the root of this problem so you can do something about the pain.
Take care and keep us updated,
Chat Moderator
Huntsman Cancer Institute Myeloma Clinic
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artsyamerican
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Posted: Tue Oct 27th, 2009 03:14 am |
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Thank you so much. I will let my GP know of your recommendation. Hopefully I won't have to battle my insurance company to get the CScan/Pet Scan and the MRI. I will surely keep you updated. Again - thank you!
Peace,
Amy
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artsyamerican
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Posted: Tue Oct 27th, 2009 10:30 pm |
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I sent a fax to my PCP asking for the tests be run that you recommended - his secretary called me and said he did not feel comfortable ordering those tests and that I should see an oncologist. I fired him. How uncomfortable is ordering a PET SCAN/CT scan for crying out loud? I truly think that doctors here are paid incentives not to order expensive tests!!!
Could you recommend an oncologist in Florida? Not at Moffitt?
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DougC
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Posted: Wed Oct 28th, 2009 12:52 am |
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I see you brought fighters personality with you from cancercompass ;-) I wish you could get to the Huntsman...I've been very happy/pleased with their care of me. Anyway, I hope you find the answers you seek. btw, if ordering both tests are too much for your insurance company, I'd go with the PET/CT first and 6 months down the road get the MRI. The PET/CT is good for showing cancer hot spots and lesions. However, the MRI not only sees the lesions, but also the bone marrow. I know my insurance made us choose at one point and we went with the PET/CT first. Maybe the moderator will say something different....not sure.
Welcome and my best to you
Doug a.k.a UTboy
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Posted: Wed Oct 28th, 2009 02:20 am |
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Hi,
The purpose of this message board is to provide general insight about myeloma to patients and/or family members based on the knowledge and opinions of our medical experts. Please know that we cannot make recommendations regarding specific oncologists nor do we intend to criticize any oncologist or general practitioner.
As a general insight, though, many insurance companies would probably not approve a PET/CT scan or MRI for a myeloma/MGUS patient if it is ordered by a PCP.
Hope this helps,
Chat Moderator
Huntsman Cancer Institute Myeloma Clinic
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artsyamerican
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Posted: Wed Oct 28th, 2009 11:23 am |
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| Thank you for your insight.
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denesepete
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Posted: Fri Oct 30th, 2009 02:59 am |
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Amy. try try and TRY again to get to Huntsman. They have absolutely saved myhusband's life. Doug C is correct. Don't wait, our original Oncologist told us my husband had 6 months to live. That was a year ago 10/23. He has been at Huntsman since December 08. 2 transplants and a tough nine months, he is doing amazing. Can't say eough for the treatment from Trictot and Zangari at Huntsman. They are absolutely the GOLD STANDARD for Myeloma treatment. Best of luch. keep us informed - please know you are in our thoughts and prayers.
denese (caregiver)
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