Julie-
I agree with Multibilly that your father's hemoglobin might be low and causing the fatigue and confusion. That also was my first thought. I also agree that you should keep track of all of the lab tests, scans, etc that your father has. The IMF has a free computer program that you can download to keep track of all of your test results. It doesn't work with Mac computers.
The doctors at Penn are Stadtmauer, Vogl, Weiss and Cohen. Dr. Cohen is one of the medical advisors on this forum. Dr. Stadtmauer is the chair of the Myeloma department and is my doctor. You couldn't go wrong with any of the doctors. If your parents decide to be treated at Penn, they have a service that you can sign up for where your lab results will get posted. Doctor appts also get posted and reminders are sent. You also can request refills on prescriptions, send messages to your treatment team, etc through the program. Since some of the lab tests take a few days to a week to be completed, it makes getting all of your results easy.
Dr. Vogl presented the highlights of the ASH 2013 conference at our support group this month. At the end of his presentation he listed all of the active clinical trials that the Myeloma group is doing at Penn and mentioned several that are going to start within the next few months. There are at least 20 trials currently accepting patients.
Feel free to contact any of us personally if you like. Some questions you may not want the entire forum to be part of.
Nancy in Phila
Forums
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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
Sorry it's taken a few days. I have a 2 and 4 your old at home and they both got sick this week. Trying to type this out before they realize I'm on the computer and lose it. 
Multibilly, thank you for the idea about hemoglobin. Is that something that can fluctuate day-to-day, or does that remain relatively stable? His test results that I mentioned in my second post were that he has no CRAB symptoms, and blood and urine are normal except for low m-protein elevation (0.9 I think). And his bone marrow is >10%. Hematologist did not mention any abnormality in his hemoglobin level. Unless hemoglobin can fall or rise dramatically day-to-day...almost wish this could be the case, because it would be an easy answer. It's frustrating to not understand why. He's getting appointments in mid/late March with Penn and NIH, so hopefully that will be more revealing. Perhaps his situation has changed in the last month since he's been tested.
Nancy and Multibilly, thank you for your advice on paperwork. I have found it helpful for myself to have my own copies of medical records, so I'm sure my dad will find it equally useful.
Nancy, how easy is that IMF computer program to use? We have Windows, so I assume that it works on that platform. I am going to PM you about Penn. I am interested about the doctors and programs. It's comforting to know that there are so many trials and research programs in the works.
My dad was wondering about aspirin therapy while having multiple myeloma. His neurologist suggested taking 1 adult 325 mg (?) tab of aspirin per day as preventative therapy against blood clots. Have any doctors recommended avoiding NSAIDS due to increased kidney problems, since they have a role in suppressing prostaglandins? I told him to call his hematologist, but she may not know as it related to myeloma.
Thanks everyone!
Multibilly, thank you for the idea about hemoglobin. Is that something that can fluctuate day-to-day, or does that remain relatively stable? His test results that I mentioned in my second post were that he has no CRAB symptoms, and blood and urine are normal except for low m-protein elevation (0.9 I think). And his bone marrow is >10%. Hematologist did not mention any abnormality in his hemoglobin level. Unless hemoglobin can fall or rise dramatically day-to-day...almost wish this could be the case, because it would be an easy answer. It's frustrating to not understand why. He's getting appointments in mid/late March with Penn and NIH, so hopefully that will be more revealing. Perhaps his situation has changed in the last month since he's been tested.
Nancy and Multibilly, thank you for your advice on paperwork. I have found it helpful for myself to have my own copies of medical records, so I'm sure my dad will find it equally useful.
Nancy, how easy is that IMF computer program to use? We have Windows, so I assume that it works on that platform. I am going to PM you about Penn. I am interested about the doctors and programs. It's comforting to know that there are so many trials and research programs in the works.
My dad was wondering about aspirin therapy while having multiple myeloma. His neurologist suggested taking 1 adult 325 mg (?) tab of aspirin per day as preventative therapy against blood clots. Have any doctors recommended avoiding NSAIDS due to increased kidney problems, since they have a role in suppressing prostaglandins? I told him to call his hematologist, but she may not know as it related to myeloma.
Thanks everyone!
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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
Julie,
NSAIDS should be avoided with myeloma because they can affect the kidneys which is a problem with myeloma. Usually aspirin is not recommended unless you are taking Revlimid, thalidomide or any of the other medications that have blood clots as a possible side effect. Since I take Revlimid I am taking one 325 mg of aspirin a day.
People do say that the IMF program for keeping track of lab results is easy to use. I have an Apple computer so I have never used it. But, I receive my lab results online from Penn and I can graph all of my results for the last 6 years to follow trends. The IMF also has lots of patient information that you can either download or request hard copies be sent to you with information about lab tests and what they mean, Myeloma 101, etc. You can also ask them if there is a support group in the area where your parents live. These are really helpful in that you can meet other people who have just been diagnosed and people who are at all stages of this journey in their treatment. The one I go to has a few people who have been living with myeloma for about 20 years.
Nancy in Phila
NSAIDS should be avoided with myeloma because they can affect the kidneys which is a problem with myeloma. Usually aspirin is not recommended unless you are taking Revlimid, thalidomide or any of the other medications that have blood clots as a possible side effect. Since I take Revlimid I am taking one 325 mg of aspirin a day.
People do say that the IMF program for keeping track of lab results is easy to use. I have an Apple computer so I have never used it. But, I receive my lab results online from Penn and I can graph all of my results for the last 6 years to follow trends. The IMF also has lots of patient information that you can either download or request hard copies be sent to you with information about lab tests and what they mean, Myeloma 101, etc. You can also ask them if there is a support group in the area where your parents live. These are really helpful in that you can meet other people who have just been diagnosed and people who are at all stages of this journey in their treatment. The one I go to has a few people who have been living with myeloma for about 20 years.
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
I wanted to post an update, specifically so that I can thank those of you who very generously replied to my questions, and helped me through PM's.
My father had two appointments with two different myeloma specialists this past week, and I am so grateful to say that he is not a candidate for treatment at this time. The reason I am grateful is that his SSM is not considered as aggressive as we had originally thought. His potential for turning symptomatic is in the 5% per year range after all, which is not quite the impression we had gotten previously from the hematologist.
As I have learned and you told me, the hematologist is not the one to see. The myeloma specialists are the ones to see.
All of the advice I was given by the members of this forum was spot on. I was able to really help my parents in a meaningful way, and to relieve them of some of the daunting work of finding the right places to go and the right people to see. I was able to help them make informed decisions, and it was done very quickly. All because you guys cared enough to answer my posts.
NStewart, thank you so much for your information and help.
terryl1 I can't tell you thank you enough times.
You guys have all given a great gift to a family you have never met. We thank you very much.
My father had two appointments with two different myeloma specialists this past week, and I am so grateful to say that he is not a candidate for treatment at this time. The reason I am grateful is that his SSM is not considered as aggressive as we had originally thought. His potential for turning symptomatic is in the 5% per year range after all, which is not quite the impression we had gotten previously from the hematologist.
As I have learned and you told me, the hematologist is not the one to see. The myeloma specialists are the ones to see.
All of the advice I was given by the members of this forum was spot on. I was able to really help my parents in a meaningful way, and to relieve them of some of the daunting work of finding the right places to go and the right people to see. I was able to help them make informed decisions, and it was done very quickly. All because you guys cared enough to answer my posts.
NStewart, thank you so much for your information and help.
terryl1 I can't tell you thank you enough times.
You guys have all given a great gift to a family you have never met. We thank you very much.
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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
Julie,
Delighted to hear this worked out the way it did. I remember thinking it was the end of the world when I was first diagnosed with smoldering myeloma, but now those feelings are gone and I simply hope to smolder away the rest of my life. Even if I do progress and require some sort of drug treatment in the future, I can take it in stride at this point.
Best of luck to you and your dad.
Delighted to hear this worked out the way it did. I remember thinking it was the end of the world when I was first diagnosed with smoldering myeloma, but now those feelings are gone and I simply hope to smolder away the rest of my life. Even if I do progress and require some sort of drug treatment in the future, I can take it in stride at this point.
Best of luck to you and your dad.
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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
This is a wonderful story and a testimony to what a wonderful resource the Beacon is for patients (note that I do not get paid by the Beacon, so I do not have a financial conflict of interest!). Thanks to everyone for pointing Julie and her family in the right direction!
Pete V.
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
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