When my blood work was done, they then move me from the blood work room to the backroom to wait to see the doctor. He came in and, as I said, spent about 3 minutes with me. He does not have the results that quick on the blood work, and he comes in without any paperwork or clipboard like most doctors do.
He ask if I have had any changes since last visit and I told him, my back seems to be more intense pain (feels like pain is inside my body, like bone pain), it does not hurt to touch, it is movement pain. I cannot lay down flat in my bed. If I do, my pain level causes my blood pressure to spike. Last MRI I had done, they had to take me straight over to the ER, because my BP was 198 / 135 and they put me in the hospital for observation for high blood pressure.
My oncologist also knows I am on a Butrans (buprenorphine) pain patch that I have to replace every 7 days. This helps a little with leveling the pain, but I also take 10 mg Flexril (cyclobenzaprine), 10-325 hydrocodone and gabapentin 300 mg every 6 hours just to be able to move around and function as a realtor, but my back by mid afternoon finally puts me in a chair, because of the back and leg pain. I also just stated getting severe left back pain.
Bottom line is I was sent to the oncology doctor by my orthopedic doctor because the test he did to try and find out "The WHY" I have osteoporosis, and his test showed signs of multiple myeloma, but the cancer doctor just said in my opinion, I don't believe you have multiple myeloma, but we did not even get the results of the blood work until the next day after he saw me and I don't get any calls from the doctor. or the office telling me the results of my blood work.
Luckily they do have a patient portal and I am able to print the results of the blood work, but not an explanation telling me what all the numbers mean and what is next. Most people that I talk to say they should be doing a bone marrow biopsy, but the cancer doctor said he did not think I needed that at this point.
I am so frustrated and feel so scared. As a 54 year old male trying to work with this pain and all these red flags on my blood work, drains me mentally and physically. I also have been having severe diarrhea about every 7-10 days and it is so violate, it does not stop until I am cleaned out, then I start eating soft foods again and this has been happening since May of this year and the cancer doctor knows this too, but no explanation.
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Re: Doctor found signs of myeloma - help with lab results
Kroger, I am alarmed by the indifference you seem to be receiving from your oncologist. I am a 49 year old male with multiple myeloma. I have osteoporosis with multiple compression fractures in my spine and lytic lesions throughout my body. After having great doctors aid me, I've learned now (with assistance from Myeloma Beacon members) to question all aspects of opinions on my condition. Get a second opinion now!
If that is too slow, have a follow-up with your oncologist to have him quantify his opinion on your blood work. This disease is literally like peeling an onion, you have many layers that, once pulled back, tend to reveal themselves.
I wish you good luck and I hope I was of some assistance.
Kully
If that is too slow, have a follow-up with your oncologist to have him quantify his opinion on your blood work. This disease is literally like peeling an onion, you have many layers that, once pulled back, tend to reveal themselves.
I wish you good luck and I hope I was of some assistance.
Kully
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: Doctor found signs of myeloma - need help with lab resul
krogers,
Please get a second opinion immediately. We are not physicians, but your presentation is consistent with active myeloma and at a minimum, should require immediate attention / treatment of some sort.
I do not understand all these things. Did they check to see if you have a paraprotein (it would be called an m-spike). I would think you should not only have some scans done to check your bones, but also a bone marrow biopsy.
The one thing I've found with most physicians is if I tell my physician I would be more comfortable having a test done so that I can find out for sure, they usually agree and will order the tests.
Wishing you all the best.
Please get a second opinion immediately. We are not physicians, but your presentation is consistent with active myeloma and at a minimum, should require immediate attention / treatment of some sort.
I do not understand all these things. Did they check to see if you have a paraprotein (it would be called an m-spike). I would think you should not only have some scans done to check your bones, but also a bone marrow biopsy.
The one thing I've found with most physicians is if I tell my physician I would be more comfortable having a test done so that I can find out for sure, they usually agree and will order the tests.
Wishing you all the best.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Doctor found signs of myeloma - help with lab results
Thank you and I plan to get a second opinion. The doctor also did do xrays of the complete body and that was the only thing he did tell me, which was he found -- what I understood him to say -- 2 lesions on my skull, but we would continue to monitor those.
Re: Doctor found signs of myeloma - help with lab results
Krogers,
You have two lesions on your skull on top of the other things you've mentioned? Glad you are getting a second opinion (who I am sure will be more communicative than your current doc)! Like Toni said, if you let us know where you live, folks on this forum can help locate another institution and doc. This link might be a good starting point for you in the meantime.
https://myelomabeacon.org/resources/treatment-centers/
You have two lesions on your skull on top of the other things you've mentioned? Glad you are getting a second opinion (who I am sure will be more communicative than your current doc)! Like Toni said, if you let us know where you live, folks on this forum can help locate another institution and doc. This link might be a good starting point for you in the meantime.
https://myelomabeacon.org/resources/treatment-centers/
Last edited by Multibilly on Sun Sep 28, 2014 8:46 pm, edited 1 time in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Doctor found signs of myeloma - need help with lab resul
krogers - ok, glad to hear you are pursuing. Please let us be supportive of you in anything you need. Understand that we are all highly concerned about your condition and feel you need immediate evaluation and attention.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Doctor found signs of myeloma - need help with lab resul
Thank you for the link. I live in Myrtle Beach SC, so it looks as if Duke may be the one that is close to me. I am also originally from Charleston SC, so I may be able to check with MUSC. Not sure, but we are checking into them now to see if they would know if I could make an appointment and take my records to them. I have been printing the results and putting them in a notebook, so I can hand the book to them for reference. Also gives my wife something to put her hands on, in case I get in a situation I cannot.
Re: Doctor found signs of myeloma - need help with lab resul
It sounds like you and your wife are doing an excellent job staying organized and prepared. Even with just MGUS I was able to get in to see a myeloma specialist within a week of my initial phone call. I hope you will be able to get in right away.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Doctor found signs of myeloma - need help with lab resul
Hi krogers,
In addition to Duke, you may want to consider seeing if you can get an appointment with Dr. Peter Voorhees at UNC's Lineberger Cancer Center. Dr. Voorhees is a myeloma specialist who has been helping patients in caregivers here in the forum for several years. You can view his postings here,
https://myelomabeacon.org/forum/search.php?author_id=695&sr=posts
and you can find additional information about him, including how to make an appointments with him, here,
http://findadoc.unchealthcare.org/directory/profile.asp?dbase=main&setsize=5&pict_id=0002024
Best of luck to you, and please let us know what you find out and if we can be of any further assistance.
In addition to Duke, you may want to consider seeing if you can get an appointment with Dr. Peter Voorhees at UNC's Lineberger Cancer Center. Dr. Voorhees is a myeloma specialist who has been helping patients in caregivers here in the forum for several years. You can view his postings here,
https://myelomabeacon.org/forum/search.php?author_id=695&sr=posts
and you can find additional information about him, including how to make an appointments with him, here,
http://findadoc.unchealthcare.org/directory/profile.asp?dbase=main&setsize=5&pict_id=0002024
Best of luck to you, and please let us know what you find out and if we can be of any further assistance.
Re: Doctor found signs of myeloma - help with lab results
"Monoclonal paraproteinemia" is in my patient portal as noted in the assistant's notes. What is this?
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