So 5 days ago my dad got diagnosed. My mom called me crying on the phone and it was like the air got sucked out of the room. I tried to not let my 2 and 4 year old babies hear their mommy crying in the kitchen, and then I had to go wake up my husband so that I could cry in his arms.
We were so sure he would be MGUS that this was so shocking and horrific to hear. Even his hematologist thought he would be after everything else was ok. Then the bone marrow comes back as plus 10%.
My dad's symptoms are fatigue with exertion and some episodes of confusion. I'm assuming because of the m-proteins? Has anyone else experienced this? What can be done, if anything, to help this? He is still working and would prefer to continue, but he is on his feet all day.
Has anyone been seen at NIH or Penn?
We just found out, so he's still trying to get his bearings. I've been trying to help out by researching stuff so that he has some information. And at the same time I don't know what to do. My mom cries all the time when out of his ear shot. I kind of feel like maybe getting the evaluation will help them to ease some anxiety with more information. But maybe that's an impossible dream.
Any thoughts would be appreciated. Wishing you all the best. I hope you won't hold it against me if I say that I wish I never had to come to this website, but now that I'm here, I hope to get some valuable information to help my dad to make some decisions for his treatment. Thanks.
Forums
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Julielk - Name: Julie in Phila
- Who do you know with myeloma?: My dad
- When were you/they diagnosed?: Feb 10 2014
- Age at diagnosis: 73
Re: Father just diagnosed with smoldering myeloma
I'm sorry to hear that your father has been diagnosed with smoldering myeloma. All of you should take a deep breath. This isn't the end of the world. There are lots of wonderful treatments available that can improve your father's health and quality of life. Many of us have continued to work at all kinds of jobs for many years while undergoing treatment. I was a physical therapist for 5 years following my diagnosis with short medical leaves due to a fractured arm and for a stem cell transplant. I retired because of age not because of myeloma.
I have been treated at Penn since my diagnosis in 2008. They have a very good Myeloma team there with 4 physicians treating only people with Myeloma. I have been happy with my experience there. My oncologist treats me as a colleague and an active participant in the decisions about my treatment. We discuss research and how it relates to my disease.
You may want to get second and third opinions from Myeloma specialists before you decide on where you want your father to have his care. Read up on as much as you can about Myeloma, the treatments/drugs available, and what's in the pipeline for new drugs. Don't pay attention to survival statistics because they are statistics, not individual people. Contact the IMF and the MMRF for information. They both have really good patient materials explaining what Myeloma is, what treatments there are, what the lab tests mean, etc. Ask as many questions as you can think of. Ask the IMF if there are any support groups in the area where you live. I go to one in Philadelphia monthly and it is a real help. They are very educational and it is good to be around people who understand Myeloma. In the group I go to there are people who are newly diagnosed, people who are in all stages of treatment and people who have lived with Myeloma for 20+ years.
Most of all, don't despair. Myeloma isn't a death sentence. It is another branch in the journey of life that can be lived fairly normally.
All the best to your father and to the rest of your family.
Nancy in Phila
I have been treated at Penn since my diagnosis in 2008. They have a very good Myeloma team there with 4 physicians treating only people with Myeloma. I have been happy with my experience there. My oncologist treats me as a colleague and an active participant in the decisions about my treatment. We discuss research and how it relates to my disease.
You may want to get second and third opinions from Myeloma specialists before you decide on where you want your father to have his care. Read up on as much as you can about Myeloma, the treatments/drugs available, and what's in the pipeline for new drugs. Don't pay attention to survival statistics because they are statistics, not individual people. Contact the IMF and the MMRF for information. They both have really good patient materials explaining what Myeloma is, what treatments there are, what the lab tests mean, etc. Ask as many questions as you can think of. Ask the IMF if there are any support groups in the area where you live. I go to one in Philadelphia monthly and it is a real help. They are very educational and it is good to be around people who understand Myeloma. In the group I go to there are people who are newly diagnosed, people who are in all stages of treatment and people who have lived with Myeloma for 20+ years.
Most of all, don't despair. Myeloma isn't a death sentence. It is another branch in the journey of life that can be lived fairly normally.
All the best to your father and to the rest of your family.
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: Father just diagnosed with smoldering myeloma
Julie,
Do get a second opinion and do hook up with a specialist that lives and breathes multiple myeloma. And like Nancy said, take a deep breath and start to dig into the disease to better understand it. If you let us know what part of the country you are in, folks on this site can make recommendations on doctors and/or facilities to seek out that may be close to you.
But also remember that SMM isn't something one typically treats and your Dad may very well smolder the rest of his life without ever requiring treatment (care). The current ills that your dad is feeling may very well not be associated with SMM (typically, smolderers don't experience any health issues, but this isn't always the case). Only a specialist can tell you if these health issues are associated with his SMM diagnosis. I assume that your doc has already verified that your dad has no CRAB issues (CRAB =high Calcium level, Renal (kidney) isues, Anemia, or Bone issues) if he has a diagnosis of SMM?
There are some treatment trials available for those hat are classified as being "high risk" SMM, and only high risk SMM patients. The NIH is one of those places that is conducting such an early trial investigation. The risk stratification of SMM is based on specific genetic mutations that should have been reported in your Dad's lab results from his bone marrow biopsy (FISH, etc). You need to know which (if any) mutations he has to figure out if he is high risk or not. He could very well not have any adverse mutations associated with multiple myeloma (this is the situation for many smolderers, including me).
Folks here on this forum are happy to help you.
Do get a second opinion and do hook up with a specialist that lives and breathes multiple myeloma. And like Nancy said, take a deep breath and start to dig into the disease to better understand it. If you let us know what part of the country you are in, folks on this site can make recommendations on doctors and/or facilities to seek out that may be close to you.
But also remember that SMM isn't something one typically treats and your Dad may very well smolder the rest of his life without ever requiring treatment (care). The current ills that your dad is feeling may very well not be associated with SMM (typically, smolderers don't experience any health issues, but this isn't always the case). Only a specialist can tell you if these health issues are associated with his SMM diagnosis. I assume that your doc has already verified that your dad has no CRAB issues (CRAB =high Calcium level, Renal (kidney) isues, Anemia, or Bone issues) if he has a diagnosis of SMM?
There are some treatment trials available for those hat are classified as being "high risk" SMM, and only high risk SMM patients. The NIH is one of those places that is conducting such an early trial investigation. The risk stratification of SMM is based on specific genetic mutations that should have been reported in your Dad's lab results from his bone marrow biopsy (FISH, etc). You need to know which (if any) mutations he has to figure out if he is high risk or not. He could very well not have any adverse mutations associated with multiple myeloma (this is the situation for many smolderers, including me).
Folks here on this forum are happy to help you.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Father just diagnosed with smoldering myeloma
Thank you so much for your replies. It has taken me 5 days to do what you said, Nancy, and take a breath. After reading many of the posts on this forum, and about the more recent therapies and advances, I do feel much better. My parents, having both been in allied medical fields, had the old impression of "diagnosis equals a year" that this disease used to carry. Thankfully this does not generally hold true any more.
I threw myself into research this week while they were still reeling from the news to help them get a head start on a direction. I feel that once the specialist visit is over, they will feel much better. I felt better with some knowledge .
I am not sure what type of SMM he has. He has to get test copies. He kind of glazed over during his conversation with the hematologist I think, but he seemed to remember that she thought that he has two high risk markers.
That's a good question. Do you guys ask for copies of all tests? Do you keep files at home? Is there a system of organizing that you found helpful to you?
Multiibilly, thanks very much for your advice. We are shooting for the specialist at NIH and we need the name of a good person at Penn. Nancy, do you have any recommendations there?
I have stopped reading all of the stuff that's out there. I think it's a waste of time right now until I know more about his particular case. It's so individual that I'm just spinning wheels unless I know values and protein levels, etc.
Multibilly I had read about confusion and weakness being a side effect of m-proteins in the blood. His are not that high, though, so it is puzzling. Hoping that the specialist can help figure it out -either it's part of the disease or not, and if not, then what is it? Maybe all of the testing that they'll do will get to the bottom.
Again, many thanks from a worried daughter
Sorry for the long post.
I threw myself into research this week while they were still reeling from the news to help them get a head start on a direction. I feel that once the specialist visit is over, they will feel much better. I felt better with some knowledge .
I am not sure what type of SMM he has. He has to get test copies. He kind of glazed over during his conversation with the hematologist I think, but he seemed to remember that she thought that he has two high risk markers.
That's a good question. Do you guys ask for copies of all tests? Do you keep files at home? Is there a system of organizing that you found helpful to you?
Multiibilly, thanks very much for your advice. We are shooting for the specialist at NIH and we need the name of a good person at Penn. Nancy, do you have any recommendations there?
I have stopped reading all of the stuff that's out there. I think it's a waste of time right now until I know more about his particular case. It's so individual that I'm just spinning wheels unless I know values and protein levels, etc.
Multibilly I had read about confusion and weakness being a side effect of m-proteins in the blood. His are not that high, though, so it is puzzling. Hoping that the specialist can help figure it out -either it's part of the disease or not, and if not, then what is it? Maybe all of the testing that they'll do will get to the bottom.
Again, many thanks from a worried daughter
Sorry for the long post.-
Julielk - Name: Julie in Phila
- Who do you know with myeloma?: My dad
- When were you/they diagnosed?: Feb 10 2014
- Age at diagnosis: 73
Re: Father just diagnosed with smoldering myeloma
Yes, you want to get copies of ALL records of blood and serum lab tests, including the bone marrow biopsy pathology report, FISH report, etc. You should also request CDs of the whole body imaging he had done and also request copies of the radiologist's reports. You should always request these before you leave the office. Just keep the tests in chronological order in a big folder as you get them on each visit and take them with you when you to to various doctor's visits. I also find it helpful to graph some of the key results on a spreadhseet over time to see how things are going. But, that's not for everyone though.
In your case, it would also be good to have a copy of the doctor's diagnosis that you can also share with the other docs you will be seeing. Make sure to take all these earlier lab results, CDs and doctor's diagnosis when you see the other docs for second opinions. It will make the appointments a lot more efficient. The other docs may actually request copies of all these materials before meeting with you.
I don't know what to make of the fatigue and confusion for a SMM patient. I personally have never experienced any health issues. When you say he has a low M-Spike, what is it? I assume he has no signs of anemia (low hemagloglobin, low red blood cell (RBC) count, etc) if he was designated as SMM? Others on this forum may chime in that have had similar experiences to your father's.
In your case, it would also be good to have a copy of the doctor's diagnosis that you can also share with the other docs you will be seeing. Make sure to take all these earlier lab results, CDs and doctor's diagnosis when you see the other docs for second opinions. It will make the appointments a lot more efficient. The other docs may actually request copies of all these materials before meeting with you.
I don't know what to make of the fatigue and confusion for a SMM patient. I personally have never experienced any health issues. When you say he has a low M-Spike, what is it? I assume he has no signs of anemia (low hemagloglobin, low red blood cell (RBC) count, etc) if he was designated as SMM? Others on this forum may chime in that have had similar experiences to your father's.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Father just diagnosed with smoldering myeloma
Hi Julie, I live just outside of Philadelphia in Haddonfield, NJ. I am both a patient at UPenn and the NIH. I did the CRD trial at the NIH and am monitored still by them. I am also monitored at UPenn by Dr. Stadtmauer the head of the Myeloma Section at UPenn' Abramson Cancer Center. UPenn has a large myeloma section with several experts. They are also a world leader in developing engineered T Cell Therapies for blood cancers. By the way, NIH myeloma patients were recently informed that Dr. Landgren, chief of the NIH's myeloma office, is leaving the NIH to be the head of Sloan Kettering's myeloma service as of May 1, 2014. I am not sure they are taking on new patients and I think they are downsizing the the myeloma section eventually. Check with them for details. Send me a private message if you want further details. Best. Terry L.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Father just diagnosed with smoldering myeloma
It is always appropriate to seek out second opinion at Myeloma center. Smoldering multiple myeloma, by definition is a cause for close observation and is without symptoms or organ damage. Further, outside of a clinical trial therapy is not warranted until symptoms present. Typically, the organ damage is defined by the CRAB criteria (hyperCalcemia, Anemia, Renal/Kidney failure, and Bone disease). As the other posts have stated, it is important to get all of the facts and to determine the contribution of the myeloma to your father's confusion and fatigue. If related to myeloma. then therapy should be initiated. Importantly, this disease needs to be put in context we are getting better and better and making myeloma a chronic disease. I would urge you and your family to consider the words from the other posts and continue to seek expert care for your father's myeloma.
Best of luck and please keep everyone updated.
Best of luck and please keep everyone updated.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Father just diagnosed with smoldering myeloma
Oh, another important thing to do is to write down all of your questions ahead of time and keep track of them and the answers when you meet with the doc. I actually record my appointment conversation on my smartphone.
It's really easy to get "caught like Bambi in the headlights" during the appointment, especially when the doc mentions something unexpected during the appointment. You can then can easily forget to ask all the questions or simply forget some key details that the doc had mentioned. Some folks on this forum also like to bring along another person just to have second set of ears, especially during the first couple of appts where everything (including the jargon) is so new to the patient.
It's really easy to get "caught like Bambi in the headlights" during the appointment, especially when the doc mentions something unexpected during the appointment. You can then can easily forget to ask all the questions or simply forget some key details that the doc had mentioned. Some folks on this forum also like to bring along another person just to have second set of ears, especially during the first couple of appts where everything (including the jargon) is so new to the patient.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Father just diagnosed with smoldering myeloma
Wow thank you all so much. I am quickly learning the value of this website! I have really learned a lot from everyone.
Thank you Dr. Shain for responding. My father is without CRAB symptoms as far as we know. He has no bone lesions. His bone marrow biopsy showed >10% infiltration, hence the hematologists SMM diagnosis. However, through my research, as well as the excellent recommendations of everyone on this website, we are seeking out multiple myeloma specialists for further diagnosis and understanding. We need to get copies of all his tests and studies before I'm able to comment further on his specific protein levels, etc. but I know it was pretty low.
We don't know what the deal is with his weakness with exertion and the one episode of confusion he had. Can SMM cause this? I know it's generally without symptoms, but can it happen? His head MRI was negative, so we don't think stroke. He said it felt almost like a hypoglycemia incident. He worked out vigorously, lifted weights, then an hour or so later apparently started acting weird and forgot my name and was really spaced out. Potassium maybe? Metabolic? He has no blood sugar issues. Liver and kidney readings are fine, 24 hr urine was good. Hoping it's not pancreas. And now he says he just feels generally weak and gets easily tired - just out of gas, with any exertion. I think he had normal EEGs. Puzzling, to be sure. Even more reason to seek specialists as you and everyone have recommended.
Multiibilly thank you for the recommendations regarding questions and recording all appointments. I think that's a great idea. I've had that problem myself, at my own appointments, hearing something unexpected then zoning out in my own thoughts while the Dr. talks on. Especially important here because of limited time in front of the specialists. I'm sure my mom will go, but she may have the same problem, esp. in light of her ADD haha
Terry, thank you! I was looking to find out who was the head of Myeloma at Penn. I have already emailed Dr. Stadtmauer's assistant Danielle, but wasn't sure if he was the guy. Good to know I went to the right man! We are getting an appointment with Dr. Landgren at NIH. He was very nice to me and replied extremely quickly and kindly to my emails. He was very upfront about his new position, so I think we'll be seen at NIH then move to Sloan Kettering after he leaves if we need to follow-up. He agreed to do this, so feeling good about that. I will PM you because I do want to talk to you. That you so much for the offer!
Again, thank you all so much. I can't tell you how much it means to me. It's a daunting prospect, as you already know, to just figure out how to start. I am truly grateful to have so many people willing to help me and my family get a roadmap, or even a starting point to initiate care with the right people.
Thank you Dr. Shain for responding. My father is without CRAB symptoms as far as we know. He has no bone lesions. His bone marrow biopsy showed >10% infiltration, hence the hematologists SMM diagnosis. However, through my research, as well as the excellent recommendations of everyone on this website, we are seeking out multiple myeloma specialists for further diagnosis and understanding. We need to get copies of all his tests and studies before I'm able to comment further on his specific protein levels, etc. but I know it was pretty low.
We don't know what the deal is with his weakness with exertion and the one episode of confusion he had. Can SMM cause this? I know it's generally without symptoms, but can it happen? His head MRI was negative, so we don't think stroke. He said it felt almost like a hypoglycemia incident. He worked out vigorously, lifted weights, then an hour or so later apparently started acting weird and forgot my name and was really spaced out. Potassium maybe? Metabolic? He has no blood sugar issues. Liver and kidney readings are fine, 24 hr urine was good. Hoping it's not pancreas. And now he says he just feels generally weak and gets easily tired - just out of gas, with any exertion. I think he had normal EEGs. Puzzling, to be sure. Even more reason to seek specialists as you and everyone have recommended.
Multiibilly thank you for the recommendations regarding questions and recording all appointments. I think that's a great idea. I've had that problem myself, at my own appointments, hearing something unexpected then zoning out in my own thoughts while the Dr. talks on. Especially important here because of limited time in front of the specialists. I'm sure my mom will go, but she may have the same problem, esp. in light of her ADD haha
Terry, thank you! I was looking to find out who was the head of Myeloma at Penn. I have already emailed Dr. Stadtmauer's assistant Danielle, but wasn't sure if he was the guy. Good to know I went to the right man! We are getting an appointment with Dr. Landgren at NIH. He was very nice to me and replied extremely quickly and kindly to my emails. He was very upfront about his new position, so I think we'll be seen at NIH then move to Sloan Kettering after he leaves if we need to follow-up. He agreed to do this, so feeling good about that. I will PM you because I do want to talk to you. That you so much for the offer!
Again, thank you all so much. I can't tell you how much it means to me. It's a daunting prospect, as you already know, to just figure out how to start. I am truly grateful to have so many people willing to help me and my family get a roadmap, or even a starting point to initiate care with the right people.
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Julielk - Name: Julie in Phila
- Who do you know with myeloma?: My dad
- When were you/they diagnosed?: Feb 10 2014
- Age at diagnosis: 73
Re: Father just diagnosed with smoldering myeloma
Hi Julie,
Again, I'll ask the question about anemia? Have you looked at his hemaglobin and red blood cell levels? Anemia is one of the four classic symptoms of symptomatic multiple myeloma and could explain fatigue and confusion. These values should be in his standard lab results if they were screening for multiple myeloma. Might be called "Hb" or "Hgb" for hemaglobin level in the lab test. Could be "RBC" in the lab printout for the red blood cell level.
Again, it might be something completely unrelated to multiple myeloma, but that would have been my first suspicion. Remember, we aren't docs...except, of course, for the great docs that do chime in on this site
Again, I'll ask the question about anemia? Have you looked at his hemaglobin and red blood cell levels? Anemia is one of the four classic symptoms of symptomatic multiple myeloma and could explain fatigue and confusion. These values should be in his standard lab results if they were screening for multiple myeloma. Might be called "Hb" or "Hgb" for hemaglobin level in the lab test. Could be "RBC" in the lab printout for the red blood cell level.
Again, it might be something completely unrelated to multiple myeloma, but that would have been my first suspicion. Remember, we aren't docs...except, of course, for the great docs that do chime in on this site
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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