Since I became ill in March of this year, I have had many tests. The most recent was a bone marrow biopsy and aspiration. I was supposed to see my oncologist on July 7th to find out the results of this test. Today, my oncologist's office called me and said that my reports were in and that he has an opening this week to go over them with me. I scheduled that appointment with them, and then called the medical records department to ask for them to e-mail my report to me, considering I has signed a release for them to do that the day of the biopsy.
Ok, now I am trying to figure out what they mean. I know that my doctor will go over them on Friday, but when I read the following, I became worried.
Results: Abnormal Myeloma FISH Panel. Gain of 1q21, Deletion of 13q with some aneuploidy, Aneuploidy-Gain of chromosomes 7,9, and 155, Loss of FGFR3/4p16.3
Gain of chromosome 7 22.0%, gain of chromosome 9 23.0%, gain of chromosome 15 14.0%, deletion of 13q with some aneuploidy in 41.0%, a gain of 1q21 in 15% and a loss of FGFR3/4p16.3 in 32.0% of nuclei.
If anyone knows how to understand this, please let me know. Previous tests included the follow reports:
Protein Electrophoresis Serum
Gamma Globulin 1.7 H, ABN. Protein Band 1 1.1 H,
Immunofixation Serum: An IgG (kappa) inmmuoglobulin is detected,
Immunoglobulin QUANT. IGG 1841 H, IGA 67 L, IGM 42
Free Light Chains: Free Kappa Light Chain 351.1 H, Free Lambda Light Chain 10.6, and Free Kappa/Free Lambda 33.12 H
Every blood tests shows white blood cells are high, MPV is always low, Neutrophil, Absolute is always high, Glucose is always high, and Alkaline Phosphatase is always high.
I'm really not sure if this means I have MGUS, or multiple myeloma. I would just like some help understanding it.
I also have a spine lesion that came back with the following results: L3 Deep Bine Biopsy: Trabecular bond and none marrow showing marrow with trilineage maturation. Focal small paratrabecular plasma cell aggregate present on CD138 immunohistochemistry. No evidence of metastatic carcinoma, lymphoid infiltrates, or granulomata. Immunohistochemistry with CD3 and 20 show a random scattering of CD3 and 20 positive cells. Immunohistochemistry with CD138 aggregate adjacent to one of the trabeculae.
The thing that concerns me is that the spine lesion isn't an area that has been causing great discomfort, but there is an area in my spine that is in the middle of my back that started as pressure and now is painful and growing in size that does bother me. I also have an area in my right hip and groin that is always in pain.
My legs hurt, it's getting harder to walk all the time, and my legs cramp at night. I have a cough that is with me everyday and shortness of breath. I keep getting cold sores, and battling cold-like symptoms. I have a place in my ribs that has a bump that is very painful, and I can't get answers for any of this. I also have bone x-rays that have provided a report that says it appears as though I could have carpal tunnel.
Again, I'm just looking for answers and each tests show something abnormal, but I haven't any clear answers. If you have any ideas or similar experiences, please share with me.
Thank you!
Forums
4 posts
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tamshock64 - Name: Tammy
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: June 2015
- Age at diagnosis: 50
Re: Searching for Answers
Tamshock64,
This is probably not the answer you want to hear. Because these initial labs for the purpose of making a diagnosis have just been made and they have not been reviewed yet with you by your doctor, I believe it would be a bit irresponsible for somebody, especially without a medical license, to make a diagnosis and comment too much about these labs over an Internet forum.
There are many Beacon readers who have a great deal of knowledge about labs like these and having lived with myeloma for a long time. And you will see, it is real common to see people post lab results here and for people to ask questions about them. And there are Beacon advisors medical doctors who are myeloma specialist who certainly are qualified to comment on your lab results.
But at this time this given the context of where you are at I feel it is really important that you go over these lab results with you doctor in person first so he or she, who has examined you and has all the information, can be sure to give you the correct information about just what your situation is. It would be horrible to have the wrong information or a miss diagnosis over the Internet that would cause you to worry excessively between now and Friday when you do not need to. And if these results are your worst fears, it is important that in a hospital setting there will be staff and other people there to support you at that time.
When I got the bad news I had myeloma there were consolers there who evaluated my mental and emotional state, guided me through what the next steps were going to be, and provided information on support groups and financial assistance should I need them. I walked out with a stack of materials and other information. That is not going to be there for you at home.
Like you though, I also got a glimpse at my lab results posted on line by my HMO and knew something was clearly not right. I did not know what it might be though but I was worried because a lot of the possibilities I could determine from researching on the Internet like you are doing now looked like this could be something serious, but some worse than others.
I really feel that getting a look at lab results in a situation like this before seeing them with your doctor is a bit of a curse. But I can understand the impatience and anxiety to look at them as soon as possible. I felt that way. I wish it were possible to see the doctor the very next day after the labs are available in a situation like this but that rarely seems to be the case for most people.
I recommended to try and stay calm as you can between now and Friday and not let your mind run away with fear contemplating the worst case possibilities. Also have somebody go with you to that appointment on Friday if at all possible to take notes if needed, you make get information overload. That can be a big help.
Best wishes and please let follow up and let us know how it goes for you,
Eric
This is probably not the answer you want to hear. Because these initial labs for the purpose of making a diagnosis have just been made and they have not been reviewed yet with you by your doctor, I believe it would be a bit irresponsible for somebody, especially without a medical license, to make a diagnosis and comment too much about these labs over an Internet forum.
There are many Beacon readers who have a great deal of knowledge about labs like these and having lived with myeloma for a long time. And you will see, it is real common to see people post lab results here and for people to ask questions about them. And there are Beacon advisors medical doctors who are myeloma specialist who certainly are qualified to comment on your lab results.
But at this time this given the context of where you are at I feel it is really important that you go over these lab results with you doctor in person first so he or she, who has examined you and has all the information, can be sure to give you the correct information about just what your situation is. It would be horrible to have the wrong information or a miss diagnosis over the Internet that would cause you to worry excessively between now and Friday when you do not need to. And if these results are your worst fears, it is important that in a hospital setting there will be staff and other people there to support you at that time.
When I got the bad news I had myeloma there were consolers there who evaluated my mental and emotional state, guided me through what the next steps were going to be, and provided information on support groups and financial assistance should I need them. I walked out with a stack of materials and other information. That is not going to be there for you at home.
Like you though, I also got a glimpse at my lab results posted on line by my HMO and knew something was clearly not right. I did not know what it might be though but I was worried because a lot of the possibilities I could determine from researching on the Internet like you are doing now looked like this could be something serious, but some worse than others.
I really feel that getting a look at lab results in a situation like this before seeing them with your doctor is a bit of a curse. But I can understand the impatience and anxiety to look at them as soon as possible. I felt that way. I wish it were possible to see the doctor the very next day after the labs are available in a situation like this but that rarely seems to be the case for most people.
I recommended to try and stay calm as you can between now and Friday and not let your mind run away with fear contemplating the worst case possibilities. Also have somebody go with you to that appointment on Friday if at all possible to take notes if needed, you make get information overload. That can be a big help.
Best wishes and please let follow up and let us know how it goes for you,
Eric
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Searching for Answers
My diagnosis came yesterday. I guess each case is very different. My oncologist said that all of my tests looked as though I would be considered MGUS, until the FISH came back. Although I have been diagnosed with myeloma, I do not need treatment at this time. However, I am having even more test completed. For example: I have pain that nobody has been able to explain, so I had CT scans completed yesterday, and I am having some ultrasounds done this coming week with so biopsies of some fatty tumors. I really don't know what will happen next. I guess it is like any other day, I can only take one day at a time. That's all anyone in this world can do. I just hope to be able to teach this fall, and be here for my children as they finish their childhood.
I would still appreciate any help from those of you who have been where I am now. I still feel like I am alone in this. Even though my family and friends are praying for me, there is nobody that I know who has any idea what this disease involves.
I would still appreciate any help from those of you who have been where I am now. I still feel like I am alone in this. Even though my family and friends are praying for me, there is nobody that I know who has any idea what this disease involves.
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tamshock64 - Name: Tammy
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: June 2015
- Age at diagnosis: 50
Re: Searching for Answers
Hi tamshock64,
I'm sorry to hear that you got the myeloma diagnosis instead of MGUS. If your doctor doesn't think you need treatment now, it sounds like you have smoldering myeloma rather than active myeloma. Is that right?
The main thing I can tell you at this point is that you most definitely are not alone. Many of us have gone through the same seemingly endless tests that you're doing now. And we've gone through the stage of wondering what the final diagnosis will be and how we will deal with it. So we understand what you're going through. It's no fun.
But another thing I can tell you is that you're going through probably the worst phase now. Once you get all the results back and develop a plan with your doctor - even if it is a watchful waiting plan - you will enter a new normal and start to feel better mentally.
One final piece of advice. If your oncologist is not a myeloma specialist, meaning that he or she sees primarily only myeloma patients, I strongly suggest that you seek out a second opinion (no matter what your oncologist says) from a myeloma specialist. They live and breathe this stuff everyday and are up on the latest developments in the rapidly changing diagnosis and treatment arenas.
Best wishes to you. Please keep us posted on how you're doing.
Mike
I'm sorry to hear that you got the myeloma diagnosis instead of MGUS. If your doctor doesn't think you need treatment now, it sounds like you have smoldering myeloma rather than active myeloma. Is that right?
The main thing I can tell you at this point is that you most definitely are not alone. Many of us have gone through the same seemingly endless tests that you're doing now. And we've gone through the stage of wondering what the final diagnosis will be and how we will deal with it. So we understand what you're going through. It's no fun.
But another thing I can tell you is that you're going through probably the worst phase now. Once you get all the results back and develop a plan with your doctor - even if it is a watchful waiting plan - you will enter a new normal and start to feel better mentally.
One final piece of advice. If your oncologist is not a myeloma specialist, meaning that he or she sees primarily only myeloma patients, I strongly suggest that you seek out a second opinion (no matter what your oncologist says) from a myeloma specialist. They live and breathe this stuff everyday and are up on the latest developments in the rapidly changing diagnosis and treatment arenas.
Best wishes to you. Please keep us posted on how you're doing.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
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