A year ago I was diagnosed with Rheumatoid Arthritis. Rheumatologist said I definetly have it. He did mention with the blood test results I was anemic.
I also have nail deformities on two nails and was suffering with exzema horribly which could ony be controled with a steroid cream. That has recently improved after many years.
Than I went in for a physical and my doctor said I had protein in my blood and still anemic recently.
I was sent to a hematologist who I believe is very new to multiple myeloma and when doing my tests said he was confused many times. He said I was only showing one antibody in my blood and he said multiple myeloma shows two.
My bone scan showed nothing to support multiple myeloma or RA. Very healthy and strong bones.
Did all the different urine tests including the 24 hour and they are perfect.
But than I had a bone marrow bioposy and he said it showed 50% plasma cells so the diagnosis of multiple myeloma.
My question is, can any thing else cause excessive plasma cells? Like Rheumatoid Arthritis?
He recommended two new drugs and than a marrow transplant using my own cells but I don't like the idea of a transplant one bit and have refused that. I am not sure what to do and I am not sure about my diagnosis and don't want to rush in treatment decisions.
I am calling tomorrow to talk a MD that also does natural medicene to look at all my tests results and get a different point of review.
What do you all think?
Forums
Re: Newly diagnosed and full of questions!
I am not a doc, I am recently diagnosed, but I have been talking to multiple myeloma specialists over the past couple of months. I would really suggest finding a Multiple Myeloma specialist in your area. Nothing against a natural medicine MD, but I would personally utilize such a professional in tandem with a specialist that handles many cases of Multiple Myeloma every year. Most oncologists/hematologists only deal with Multiple Myeloma on an occasional basis. If you see a Multiple Myeloma specialist (or better yet, a couple) that treats many multiple myeloma patients each year and live and breathe this disease, you will at least have all the "conventional" options and data in hand from a multiple myeloma specialist as you engage with a natural medicine MD. At least, that is my two cents.
Also, did your recent tests re-confirm that you are still anemic?
Did they perform blood serum tests in addition to the bone marrow tests and urine tests? Do you know your various immunoglobulin (IGA, IGG, IGM), and kappa and lambda free chain numbers and if you have an M-Spike (paraprotein)?
I'd also be really curious to hear what your natural MD comes up with diagnosis-wise and what he would recommend as a course of treatment if he does indeed confirm that you have Multiple Myeloma.
Also, did your recent tests re-confirm that you are still anemic?
Did they perform blood serum tests in addition to the bone marrow tests and urine tests? Do you know your various immunoglobulin (IGA, IGG, IGM), and kappa and lambda free chain numbers and if you have an M-Spike (paraprotein)?
I'd also be really curious to hear what your natural MD comes up with diagnosis-wise and what he would recommend as a course of treatment if he does indeed confirm that you have Multiple Myeloma.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newly diagnosed and full of questions!
My family doctor said I had a spike in protein in my blood, the hematologist said my light chain was high but the other chain was fine. I didn't know the questions to ask. I wasn't given any other info. Just because I have extra plasma cells in my bone marrow I was diagnosed, and yes the same blood test showed I was anemic.
Where do I find a specialist? Yes, he seemed very new to the disease.
Thank you.
Where do I find a specialist? Yes, he seemed very new to the disease.
Thank you.
Re: Newly diagnosed and full of questions!
Oh, I also remember he said there was no calcium in my blood.
Re: Newly diagnosed and full of questions!
1. I would request copies of ALL your lab reports and CDs of your xrays so that you can start to understand your own results better, as well as making it easier to share this info with other docs. Ask your doc to explain each of the items that matter the most and and/or are out of normal range. You can also try searching the forum for the big city names close to you.
2. If you volunteer which city/state you are in, folks on this site can likely offer some recommendations. I got my two intitial recommendations for specialist centers in Colorado from one of several doctors that monitors and chimes in on this site.
3. You can also try googling "Myelmoa Trials <Your State Name>" . If a place is doing multiple myeloma trials, it likely has multiple myeloma specialists on its staff.
4. Also check out the resources section on this site: https://myelomabeacon.org/resources/treatment-centers/
5. You might also find this thread helpful in navigating your way through all the choices in initial treatment.
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
6. I believe it is common when you have a light chain problem, that only ONE of the types of light chains is out of range. What's important is the ratio of the two, which also has a normal range. Having just one of thee light chains out of range (either low or high), will then throw the ratio off. From what you've said here (50% plasma cell, the presence of an M-Spike, one of your light chains being off and anemia (which fulfills one of the CRAB criteria), you should definitely be following up with a multiple myeloma specialist to confirm all this...and if he does say you have multiple myeloma, you should also be getting chromosome/FISH tests to help with figuring out just how well you will respond to various treatment options.
Good luck...it is quite overwhelming at first, but you will eventually start to get your head around all this. Ignore all the survival rate data that goes along with many of the reports you will read...they are all dated and don't reflect the state-of-the-art treatments and novel drugs, which have dramatically improved survival times over the past few years. There's a lot of good hope for those of us with multiple myeloma and I'm personally looking forward to living a nice, long quality life.
2. If you volunteer which city/state you are in, folks on this site can likely offer some recommendations. I got my two intitial recommendations for specialist centers in Colorado from one of several doctors that monitors and chimes in on this site.
3. You can also try googling "Myelmoa Trials <Your State Name>" . If a place is doing multiple myeloma trials, it likely has multiple myeloma specialists on its staff.
4. Also check out the resources section on this site: https://myelomabeacon.org/resources/treatment-centers/
5. You might also find this thread helpful in navigating your way through all the choices in initial treatment.
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
6. I believe it is common when you have a light chain problem, that only ONE of the types of light chains is out of range. What's important is the ratio of the two, which also has a normal range. Having just one of thee light chains out of range (either low or high), will then throw the ratio off. From what you've said here (50% plasma cell, the presence of an M-Spike, one of your light chains being off and anemia (which fulfills one of the CRAB criteria), you should definitely be following up with a multiple myeloma specialist to confirm all this...and if he does say you have multiple myeloma, you should also be getting chromosome/FISH tests to help with figuring out just how well you will respond to various treatment options.
Good luck...it is quite overwhelming at first, but you will eventually start to get your head around all this. Ignore all the survival rate data that goes along with many of the reports you will read...they are all dated and don't reflect the state-of-the-art treatments and novel drugs, which have dramatically improved survival times over the past few years. There's a lot of good hope for those of us with multiple myeloma and I'm personally looking forward to living a nice, long quality life.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newly diagnosed and full of questions!
Thank you. The hematologist told me if I don't do any thing 3-5 years but no idea on survival rate with treatment.
I am in Spotsylvania Virginia. The big hospitals around here do the bone marrow transplant, which I am not interested in.
I am in Spotsylvania Virginia. The big hospitals around here do the bone marrow transplant, which I am not interested in.
Re: Newly diagnosed and full of questions!
Yeah, but I've found that the transplant centers are often times where the specialists are. I'm engaged with two multiple myeloma specialists at two of Colorado's transplant centers. Just because you are going to a facility that does transplants doesn't mean that your only option is a transplant as you talk to these guys. As you read through the thread on my treatment discussion that I sent, you will find that there are quite a few folks on this site that are both for against transplants...I'm on the fence myself waiting to find out if I am truly symptomatic...and then I would still be debating whether to do an allo or an auto. I suspect that many of the folks not doing a transplant are still seeing specialists that operate in a facility that does transplants.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newly diagnosed and full of questions!
OK. Take a step back. First, how anemic are you? What's you're hemoglobin number? 13.9 is low/normal. I've hovered from 12.5 to 13.8. My specialist was never concerned.
What's your Creatinine number? This has to do with kidney function. There's a tie-in to light chains here but, I've been told to watch that number as well as my hemoglobin. Thankfully, both are OK.
Have you had a skeletal survey to check for bone lesions? This is important. It may pick up areas of involvement. But, PET scan and MRI are better.
You said you have no calcium issue. This is good.
From what you say, you may be smoldering/asymptomatic. You have no symptoms and, at this point probably don't need treatment. That said, find a Myeloma specialist.
And, The NIH in Bethesda, MD is a place that may be of great help to you. Do some research, find the specialist, get all the tests done. Good Luck to you.
What's your Creatinine number? This has to do with kidney function. There's a tie-in to light chains here but, I've been told to watch that number as well as my hemoglobin. Thankfully, both are OK.
Have you had a skeletal survey to check for bone lesions? This is important. It may pick up areas of involvement. But, PET scan and MRI are better.
You said you have no calcium issue. This is good.
From what you say, you may be smoldering/asymptomatic. You have no symptoms and, at this point probably don't need treatment. That said, find a Myeloma specialist.
And, The NIH in Bethesda, MD is a place that may be of great help to you. Do some research, find the specialist, get all the tests done. Good Luck to you.
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Stan W. - Name: Stan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: SMM-April 2012
- Age at diagnosis: 58
Re: Newly diagnosed and full of questions!
Thank you. Yes the bone scan and bone density test show my bones extremely healthy. When they did the bone marrow bioposy they had trouble getting thru the bone to get the marrow because my bones are so strong.
I did all the kidney tests and two doctors said every thing came back normal. My kidneys are fine.
However, the concern is my anemic level is around 9 and the bone marrow showed 50% plasma cells. I just wonder, is there a difference between myeloma plasma cells and regular plasma cells or is it if they are more of them they have to be myeloma?
I have an appointment tomorrow with another doctor to read my tests, but of course my hematologist office is still closed so I am going to call in the morning and hoping they will send them that morning before I see the new doctor. I just want another opinion that is not a specialist so he can look at the whole me and all the tests with a different view.
So it sounds like I may be close to smoldering except for the anemia. That is the only symptom I have at this time. The crazy thing is I actually feel better than when I was first diagnosed with anemia. I have more energy. I don't know.
I did all the kidney tests and two doctors said every thing came back normal. My kidneys are fine.
However, the concern is my anemic level is around 9 and the bone marrow showed 50% plasma cells. I just wonder, is there a difference between myeloma plasma cells and regular plasma cells or is it if they are more of them they have to be myeloma?
I have an appointment tomorrow with another doctor to read my tests, but of course my hematologist office is still closed so I am going to call in the morning and hoping they will send them that morning before I see the new doctor. I just want another opinion that is not a specialist so he can look at the whole me and all the tests with a different view.
So it sounds like I may be close to smoldering except for the anemia. That is the only symptom I have at this time. The crazy thing is I actually feel better than when I was first diagnosed with anemia. I have more energy. I don't know.
Re: Newly diagnosed and full of questions!
I don't recall the percentage of plasma cells determining what level you're at. There are also different protocols for measurements, etc. Very confusing. You may even be MGUS. And, your anemia could be attributed to RA.
Like you, I feel OK. But, my numbers may tell another story.
Like you, I feel OK. But, my numbers may tell another story.
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Stan W. - Name: Stan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: SMM-April 2012
- Age at diagnosis: 58
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