... cause it seems as if what I've learned ... well, it goes in one ear and out the other.
In Oct 2010 my right humerus popped in the middle of my upper arm which would be a weird place for that bone to fracture or pop. Had it x-rayed and it showed an almost 8 inch long tumor. Had it biopsied and it was a plasmacytoma tumor. Had radiation and that bone ended up an empty shell that kept fracturing. I had that bone cut out and replaced with a steel rod. Now my arm doesn't have much mobility but at least I don't have the pain I had and I can live with it.
So I continued to see my oncologist regularly and my protein level stayed low for quite a while and then it started to rise. I had another bone marrow biopsy and the pathologist wasn't able to find any myeloma cells but my doctor says I have it. Last August I found a huge lump under my arm. Biopsy came back as a plasmacytoma and the doctor said I have the soft tissue kind of multiple myeloma. CT scan showed 7 or 8 lymph nodes that are affected.
I stopped Velcade (had serious side effects from Revlimid/dex) and had another round of radiation on the tumors but it didn't do much for them. So now I'm back on Velcade/dex .
I have this cancer and I don't feel sick but I feel stupid cause i don't know much even tho I ask questions and my doctor always answers them for me. I don't know what MGUS or smoldering means. I'm not sure of my treatment, they are being careful with me cause of the heart/respiratory failure I had while on Revlimid.
So that protein level is low again, 0.04 and I'm unsure what that means. I don't know how sick I am. I know I want those tumors gone, at least the huge one under my arm. It doesn't hurt but I feel grossed out that its there.
I read materials about multiple myeloma but still don't understand it all. Its like I have a mental block or something keeping me from understanding. Maybe denial. Or maybe everything is just to technical for me and I need it to be more simple.
Thank you for listening to me vent. I really needed to talk about this.
Forums
10 posts
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Retired813 - Name: Joyce
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 55
Re: I have multiple myeloma and I feel stupid ...
Hi Retired - So sorry you are going through all of this!
I am also new to the multiple myeloma family my mom was just recently diagnosed. I too have been confused at times and find a lot of the information to be so technical that I have no idea what is being discussed.
I find that as I read when I come across something I do not understand I google it and read about it until I do understand. Some I don't expect to until we start dealing with my Mom's own treatment.
There are a couple of things I can answer MGUS stands for Monoclonal gammopathy of undetermined significance. It means there is an abnormal protein in the blood. There is usually no symptoms with it. The way I understand it is that it is a precursor to another disease including some forms of blood cancer.
Smoldering Myeloma is the beginning of myeloma - it is characterized by abnormal plasma cells in the bone marrow. At this point they "watch and wait" the patient is not exhibiting symptoms of myeloma.
After smoldering, multiple myeloma is characterized by 3 stages as it progresses.
Its an incurable, slow growing cancer. Goal is to put it in remission.
I wish I could offer you more information but I don't feel that I know an n'th as much as the other folks on this forum. I am sure someone will give you the answers you need.
Best to you and glad to hear you don't feel sick!
I am also new to the multiple myeloma family my mom was just recently diagnosed. I too have been confused at times and find a lot of the information to be so technical that I have no idea what is being discussed.
I find that as I read when I come across something I do not understand I google it and read about it until I do understand. Some I don't expect to until we start dealing with my Mom's own treatment.
There are a couple of things I can answer MGUS stands for Monoclonal gammopathy of undetermined significance. It means there is an abnormal protein in the blood. There is usually no symptoms with it. The way I understand it is that it is a precursor to another disease including some forms of blood cancer.
Smoldering Myeloma is the beginning of myeloma - it is characterized by abnormal plasma cells in the bone marrow. At this point they "watch and wait" the patient is not exhibiting symptoms of myeloma.
After smoldering, multiple myeloma is characterized by 3 stages as it progresses.
Its an incurable, slow growing cancer. Goal is to put it in remission.
I wish I could offer you more information but I don't feel that I know an n'th as much as the other folks on this forum. I am sure someone will give you the answers you need.
Best to you and glad to hear you don't feel sick!
Re: I have multiple myeloma and I feel stupid ...
Joyce,
Please don't feel stupid. I was diagnosed in November & still don't understand blood test results or any of the ramifications of this disease. I like and trust my doctor very much but if my husband didn't go with me to each visit, I would not know which end is up. I always say on the way home to explain to me what he said.
They have many different ways of explaining the results of the blood test that I am not sure if I am at a big risk for all kinds of problems or if I should just be patient and wait. I have no symptoms but the tests show I have it.
I learn more from the people on this board than I ever do at the doctor's office. Just give yourself time and read the posts and the doctors on this Forum. They seem to go into more detail and are able to explain things better to those of us who are new to this disease.
I wish the very best for you and if you keep in touch with the people on this board you'll feel more confident that, in time, you'll know the best way to go. (I'm counting on this myself -- I have seen it happen to people on this Board.)
Please don't feel stupid. I was diagnosed in November & still don't understand blood test results or any of the ramifications of this disease. I like and trust my doctor very much but if my husband didn't go with me to each visit, I would not know which end is up. I always say on the way home to explain to me what he said.
They have many different ways of explaining the results of the blood test that I am not sure if I am at a big risk for all kinds of problems or if I should just be patient and wait. I have no symptoms but the tests show I have it.
I learn more from the people on this board than I ever do at the doctor's office. Just give yourself time and read the posts and the doctors on this Forum. They seem to go into more detail and are able to explain things better to those of us who are new to this disease.
I wish the very best for you and if you keep in touch with the people on this board you'll feel more confident that, in time, you'll know the best way to go. (I'm counting on this myself -- I have seen it happen to people on this Board.)
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barbara1200 - Name: barb
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 75
Re: I have multiple myeloma and I feel stupid ...
When I was first diagnosed I had to get on a steep 'learning curve', since I didn't know very much about myeloma, other than it is a blood cancer.
What I found to be very helpful were all the booklets (which are also available online) published by the International Myeloma Foundation. If you go to their website, follow the link for newly diagnosed patients. I live in Canada, and in my case read the similar booklets published by Myeloma Canada. They have the different units of measurements in them that we use here.
I just pored over those booklets, and also did other reading, along with the help of my family who work in medical fields. Eventually I began to get the 'big picture' of myeloma treatments and the biology of the disease. Of course I ask my oncologist questions too, but I found the reading to be very helpful in getting the background I needed to talk about myeloma.
I didn't discover the Beacon website until more than a year after my treatments started, but have also found the info provided here to be really helpful. Hope that helps. Best wishes to you all.
What I found to be very helpful were all the booklets (which are also available online) published by the International Myeloma Foundation. If you go to their website, follow the link for newly diagnosed patients. I live in Canada, and in my case read the similar booklets published by Myeloma Canada. They have the different units of measurements in them that we use here.
I just pored over those booklets, and also did other reading, along with the help of my family who work in medical fields. Eventually I began to get the 'big picture' of myeloma treatments and the biology of the disease. Of course I ask my oncologist questions too, but I found the reading to be very helpful in getting the background I needed to talk about myeloma.
I didn't discover the Beacon website until more than a year after my treatments started, but have also found the info provided here to be really helpful. Hope that helps. Best wishes to you all.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: I have multiple myeloma and I feel stupid ...
Retired-
We've all been in your shoes to some extent. I really didn't learn much about myeloma and the different pre-cursors until after I started treatment. I started treatment when my arm broke and it was found that I had developed bone lesions everywhere. I had been in the "watch and wait" category of Myeloma for a year after I was diagnosed.
I found that going to a support group really helped me to begin to understand what I have learned about myeloma. The one I attend is very educational with a guest speaker most months. Talking with other people with myeloma who had already traveled the path that I was embarking on also helped me to learn about this cancer. And, then talking with my oncologist, a myeloma specialist, and reading, reading, reading has also helped.
It seems that once you get a fairly good handle on the information more comes out that one has to wrap their brains around. So, don't despair. Keep reading and asking questions. If you aren't being seen by a myeloma specialist, I would suggest that you do so.
Nancy in Phila
We've all been in your shoes to some extent. I really didn't learn much about myeloma and the different pre-cursors until after I started treatment. I started treatment when my arm broke and it was found that I had developed bone lesions everywhere. I had been in the "watch and wait" category of Myeloma for a year after I was diagnosed.
I found that going to a support group really helped me to begin to understand what I have learned about myeloma. The one I attend is very educational with a guest speaker most months. Talking with other people with myeloma who had already traveled the path that I was embarking on also helped me to learn about this cancer. And, then talking with my oncologist, a myeloma specialist, and reading, reading, reading has also helped.
It seems that once you get a fairly good handle on the information more comes out that one has to wrap their brains around. So, don't despair. Keep reading and asking questions. If you aren't being seen by a myeloma specialist, I would suggest that you do so.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: I have multiple myeloma and I feel stupid ...
Good grief Joyce don't say stupid, under informed maybe? 
I was diagnosed in '09, did Velcade/prednisone, stem cell transplant in 2010, and I'm now coming out of remission.
I had BMB a few days ago and got the results yesterday and I still have no idea beyond the comments as to the results. I suppose it depends on what each individual wants to know. I tend to want to know the degree and try not to get into the information too far. One question does lead to another and it can be maddening , at least for me.
I suppose the one thing I do know is that our odds are much improved. I lost my sister to the disease in '95 and unfortunately treatments then were few and there was no remission. We do still have a future.
I was diagnosed in '09, did Velcade/prednisone, stem cell transplant in 2010, and I'm now coming out of remission.
I had BMB a few days ago and got the results yesterday and I still have no idea beyond the comments as to the results. I suppose it depends on what each individual wants to know. I tend to want to know the degree and try not to get into the information too far. One question does lead to another and it can be maddening , at least for me.
I suppose the one thing I do know is that our odds are much improved. I lost my sister to the disease in '95 and unfortunately treatments then were few and there was no remission. We do still have a future.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: I have multiple myeloma and I feel stupid ...
Hi Joyce. No no no, not stupid!! I, too, had to come up a steep learning curve. Who had even heard of myeloma??
It helps to have someone with you to take notes during your first few visits. My oncologist encourages it. It also helps to come with questions. I keep a notebook that I take with me whenever I have an appointment with the oncologist. It's a standing routine between us now - he asks his questions, then I ask mine.
You said you don't know how sick you are. If you know that you are MGUS or smoldering or in one of the cancer stages, then research it. There is great information on this site, the Multiple Myeloma Research Foundation's site, and the International Myeloma Foundation site. The International Myeloma Foundation also has an app for smartphones.
When I was diagnosed, I also did research on the National Cancer Institute's site, the American Cancer Society site, and the Leukemia and Lymphoma Society's site. They're ok to start, but watch out how dated the information is, especially on the American Cancer Society site.
Also, some of the sites have very outdated discussions of topics like life expectancy. The data is old and does not reflect either the benefits of the newer treatments or the fact that myeloma is now striking a younger population.
Dana
It helps to have someone with you to take notes during your first few visits. My oncologist encourages it. It also helps to come with questions. I keep a notebook that I take with me whenever I have an appointment with the oncologist. It's a standing routine between us now - he asks his questions, then I ask mine.
You said you don't know how sick you are. If you know that you are MGUS or smoldering or in one of the cancer stages, then research it. There is great information on this site, the Multiple Myeloma Research Foundation's site, and the International Myeloma Foundation site. The International Myeloma Foundation also has an app for smartphones.
When I was diagnosed, I also did research on the National Cancer Institute's site, the American Cancer Society site, and the Leukemia and Lymphoma Society's site. They're ok to start, but watch out how dated the information is, especially on the American Cancer Society site.
Also, some of the sites have very outdated discussions of topics like life expectancy. The data is old and does not reflect either the benefits of the newer treatments or the fact that myeloma is now striking a younger population.
Dana
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: I have multiple myeloma and I feel stupid ...
Never feel stupid. Myeloma is a rare and complex disease. It takes time and patience to begin to wrap your head around the disease itself, let alone all of the additional complexities of therapy, drugs, antibiotics, transplant options ...
It takes time and everyone has there own level of understanding and even what they want to know. So, learn at your own pace. Participate in support groups and forums like the Beacon's - they are great resources. As you will note, the Beacon and support groups are full of individuals (patients and caregivers) who care and want to pass on the their knowledge and/or experiences to help others.
This is the beginning of a long journey.
It takes time and everyone has there own level of understanding and even what they want to know. So, learn at your own pace. Participate in support groups and forums like the Beacon's - they are great resources. As you will note, the Beacon and support groups are full of individuals (patients and caregivers) who care and want to pass on the their knowledge and/or experiences to help others.
This is the beginning of a long journey.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: I have multiple myeloma and I feel stupid ...
Thank you all for your replies. I try to be so positive but I have my moments when fear takes over and I feel out of control. Especially if I am doing a lot of reading on multiple myeloma and I can't quite understand what I'm reading. I appreciate you taking the time to help reassure me that I'm really not stupid. I know I'm not.
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Retired813 - Name: Joyce
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 55
Re: I have multiple myeloma and I feel stupid ...
I think when all of us started this path we had a hard time figuring it out. There is so much involved trying to learn it and make informed decisions along with the shock is just too much. My spouse goes blank as soon as the doctor starts to speak. He asks questions but can't remember the answers. I use binders and write down everything said at each appointment. We review it together when he is ready to absorb the information and write down any questions he has about it for the next appointment. Perhaps there is someone you can bring with you to help you with this?
And as others have said. Keep coming back here. Post any questions you have. The wealth of information from people who have walked this path is amazing.
And as others have said. Keep coming back here. Post any questions you have. The wealth of information from people who have walked this path is amazing.
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Terrilynnn - Name: Terrilynn
- Who do you know with myeloma?: Boyfriend
- When were you/they diagnosed?: May 18 2013
- Age at diagnosis: 46
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