Multiple Myeloma

Posted by MZ @mehz4802, Jul 27, 2016

I was diagnosed after a bone marrow biopsy as having indolent myeloma 4 years ago. My oncologist says I now have multiple myeloma. I have not been receiving any kind of treatment, just blood tests every 4 mo. followed up by an office visit. The doctor prescribed some iron pills. A friend of mine also has multiple myeloma. She started taking calcium pills and her doctor is seeing some good results. I started taking calcium/vitamin D3 supplements. My primary care doctor diagnosed me with osteopenia (as well as high blood pressure and high cholesterol). My oncologist says that as long as he’s not worried, I should not be worried. But I keep feeling like there must be something that I can do to improve my situation.

@patbrun

I was going to a clinic for years and was told I was anemic. They gave me iron pills. A few years down the road I started having pain in my ribs. Went twice to the hospital and was diagnosed with chest wall pain and given ibuprofen. The pain happened again. I went to Johns Hopkins who diagnosed me with multiple myeloma. They referred me to the cancer unit where a biopsy revealed I was Stage 3. You need to see a hematologist or cancer oncology doctor. I am in my eight year with Multiple Myeloma Bone Cancer doing chemotherapy and Immunotherapy.

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Hi @patbrun, a late welcome to Connect. If you don't mind sharing, how are you doing now with your diagnosis with multiple myeloma?

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@mehz4802

Thank you.

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Joke don't eat t-bone steaks. Carol

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Hi MZ- I would most definitely get a second opinion. My husband's brother has multiple myeloma, which is very serious. (and can also be hereditary- so any siblings should be tested (bloodtest). He was diagnosed about 6 years ago and had surgery involving stem cells, etc. Quite serious. He has been in remission. He goes to Mass General or Brigham and Women's in Boston, but he lives in Rhode Island. Prayers and hugs for you! Kathy D

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I am new to this group so please forgive my mistakes. I see a recurring theme of getting diagnosed late and then not getting all the information you need. Our story is similar, my husband kept going to the doctor with a back ache and they kept telling him it must be a pulled muscle. Then when a sneeze brought the strongest man I know to his knees, I sent him to a doctor I knew and said “please don’t send him home without answers”. By the end of that day we knew he had holes in every bone in the chest ct scan. They scheduled him for bone biopsy. My best friend had passed in about a year with multiple myeloma so when they said he had it. ( I had already been reading) I asked for a referral to The Mayo Clinic in Rochester. We are now 2 ASCT, and multiple treatments down the road. It has been 9 years and he is doing pretty darn good. The doctor that Mayo sent us to in Oregon, was at Mayo which was our gain, always reminds us, that this is a marathon, not a sprint. In my opinion, if you or a loved one has mm, then you should seek the best help you can afford. We drove to Mayo and stayed in simple lodging, but the co pays were not higher, they were less, and our doctor here works with Mayo. If your doctor doesn’t play well with others, I would seek out a second opinion. Next, I would get informed, there are many sites on line with information. I love the international Myeloma Foundation because I can ask for help with understanding things if I need it. Next, get organized, you need to track all your own blood work and treatments because if you get sick on vacation and end up in a strange hospital you will likely need all of that information. It isn’t always easy, but it is always worth it.

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@auntieoakley

I am new to this group so please forgive my mistakes. I see a recurring theme of getting diagnosed late and then not getting all the information you need. Our story is similar, my husband kept going to the doctor with a back ache and they kept telling him it must be a pulled muscle. Then when a sneeze brought the strongest man I know to his knees, I sent him to a doctor I knew and said “please don’t send him home without answers”. By the end of that day we knew he had holes in every bone in the chest ct scan. They scheduled him for bone biopsy. My best friend had passed in about a year with multiple myeloma so when they said he had it. ( I had already been reading) I asked for a referral to The Mayo Clinic in Rochester. We are now 2 ASCT, and multiple treatments down the road. It has been 9 years and he is doing pretty darn good. The doctor that Mayo sent us to in Oregon, was at Mayo which was our gain, always reminds us, that this is a marathon, not a sprint. In my opinion, if you or a loved one has mm, then you should seek the best help you can afford. We drove to Mayo and stayed in simple lodging, but the co pays were not higher, they were less, and our doctor here works with Mayo. If your doctor doesn’t play well with others, I would seek out a second opinion. Next, I would get informed, there are many sites on line with information. I love the international Myeloma Foundation because I can ask for help with understanding things if I need it. Next, get organized, you need to track all your own blood work and treatments because if you get sick on vacation and end up in a strange hospital you will likely need all of that information. It isn’t always easy, but it is always worth it.

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@auntieoakley Welcome to Mayo Clinic Connect! Your insight and experience is very well written, and will no doubt be a help for others. I am being monitored, with a diagnosis of MGUS about 2 years ago. My next appointment is in July. Thank goodness you had a Dr who was on the ball, and knew where to send you.
Ginger

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@auntieoakley

I am new to this group so please forgive my mistakes. I see a recurring theme of getting diagnosed late and then not getting all the information you need. Our story is similar, my husband kept going to the doctor with a back ache and they kept telling him it must be a pulled muscle. Then when a sneeze brought the strongest man I know to his knees, I sent him to a doctor I knew and said “please don’t send him home without answers”. By the end of that day we knew he had holes in every bone in the chest ct scan. They scheduled him for bone biopsy. My best friend had passed in about a year with multiple myeloma so when they said he had it. ( I had already been reading) I asked for a referral to The Mayo Clinic in Rochester. We are now 2 ASCT, and multiple treatments down the road. It has been 9 years and he is doing pretty darn good. The doctor that Mayo sent us to in Oregon, was at Mayo which was our gain, always reminds us, that this is a marathon, not a sprint. In my opinion, if you or a loved one has mm, then you should seek the best help you can afford. We drove to Mayo and stayed in simple lodging, but the co pays were not higher, they were less, and our doctor here works with Mayo. If your doctor doesn’t play well with others, I would seek out a second opinion. Next, I would get informed, there are many sites on line with information. I love the international Myeloma Foundation because I can ask for help with understanding things if I need it. Next, get organized, you need to track all your own blood work and treatments because if you get sick on vacation and end up in a strange hospital you will likely need all of that information. It isn’t always easy, but it is always worth it.

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Hello @auntieoakley, I'd like to add my welcome to @gingerw's. I also second her comment that your first post was well-written and contained helpful insight for other Connect members talking about multiple myeloma. Newer members to the multiple myeloma discussion, @patbrun, @robinraig, and @larsmayo may find your experience helpful in addition to the rest of the members in this discussion.

@auntieoakley, it sounds like you did a lot of advocating for your husband to get the best care possible and made sure to seek professionals that had open minds when it came to collaboration with other medical providers. You also mentioned is doing well 9 years later. If you are comfortable, what are some of the challenges you still face?

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Thank you, for your kind comments. Our lives are not challenge free for sure. My husband is on a 5 lb limit for life, because Myeloma ate holes in all of his bones before he was diagnosed. This is moderated some by the bone strengtheners but preventing more fractures is crucial to his quality of life. Although we have a great oncologist less than 60 miles away, the local medical climate is one of closed minds and doors and does not play well with others. This creates a bit of tension if there is an emergency. My husbands has a very limited immune system and has had to be hospitalized once locally for a pneumonia gone wrong. He also some other typical age related health issues that become a little more difficult when the Myeloma and bone disease have to be considered before physical therapy. All new prescriptions for thyroid, prostrate etc. must go through the interaction filter for the drugs he is already receiving. That being said, I manage his medications, and he is careful with his bones, and we try avoid exposure to viruses, and still we enjoy our time traveling within our region, watching movies, and visiting with friends and family. I am a patient advocate for anyone who asks locally, and spend a bit of time educating people about how to be a part of your own medical team. All of which I learned from our experiences at Mayo Clinic. We were blessed to be able to have his stem cell transplants there, being part of that amazing system makes you long to help others who have to try and manage complicated diseases without that kind of help.

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@auntieoakley

Thank you, for your kind comments. Our lives are not challenge free for sure. My husband is on a 5 lb limit for life, because Myeloma ate holes in all of his bones before he was diagnosed. This is moderated some by the bone strengtheners but preventing more fractures is crucial to his quality of life. Although we have a great oncologist less than 60 miles away, the local medical climate is one of closed minds and doors and does not play well with others. This creates a bit of tension if there is an emergency. My husbands has a very limited immune system and has had to be hospitalized once locally for a pneumonia gone wrong. He also some other typical age related health issues that become a little more difficult when the Myeloma and bone disease have to be considered before physical therapy. All new prescriptions for thyroid, prostrate etc. must go through the interaction filter for the drugs he is already receiving. That being said, I manage his medications, and he is careful with his bones, and we try avoid exposure to viruses, and still we enjoy our time traveling within our region, watching movies, and visiting with friends and family. I am a patient advocate for anyone who asks locally, and spend a bit of time educating people about how to be a part of your own medical team. All of which I learned from our experiences at Mayo Clinic. We were blessed to be able to have his stem cell transplants there, being part of that amazing system makes you long to help others who have to try and manage complicated diseases without that kind of help.

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Hi! As both patient and Mentor, I see your post as valuable on more than one level. Any chance you are encouraged to make other contributions at another time?
Nancy

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@1nan

Hi! As both patient and Mentor, I see your post as valuable on more than one level. Any chance you are encouraged to make other contributions at another time?
Nancy

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I would love to, I am inspired to contribute in any way that I am able and thank you.

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@auntieoakley

I would love to, I am inspired to contribute in any way that I am able and thank you.

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Wonderful. I will look forward to any posts you make. Bet I won't be the only one! Stay well.
Nancy

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Hello members of the multiple myeloma discussion. As I am sure many of you have already met and discussed with @1nan, I thought I would share her member spotlight with you so you could get to know her a bit more in a different way, https://connect.mayoclinic.org/page/about-connect/newsfeed-post/thinking-smart-not-scared-meet-1nan/.

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@JustinMcClanahan

Hello members of the multiple myeloma discussion. As I am sure many of you have already met and discussed with @1nan, I thought I would share her member spotlight with you so you could get to know her a bit more in a different way, https://connect.mayoclinic.org/page/about-connect/newsfeed-post/thinking-smart-not-scared-meet-1nan/.

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Thank you Justin. There are pretty wonderful folks in this group. It has been my pleasure to get to know them.

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My MGUS may have become active MM. Results of latest bloodwork indicate something has gone awry [sp?] Protein levels through the roof after being above normal for a long time. Pet-CT scan scheduled 7/23, and possible bone marrow biopsy again. My nephrologist and hematologist oncologist are on top of it all. Couldn't come at a worse time. I move 700 miles away I. 3 weeks.
Ginger

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@gingerw

My MGUS may have become active MM. Results of latest bloodwork indicate something has gone awry [sp?] Protein levels through the roof after being above normal for a long time. Pet-CT scan scheduled 7/23, and possible bone marrow biopsy again. My nephrologist and hematologist oncologist are on top of it all. Couldn't come at a worse time. I move 700 miles away I. 3 weeks.
Ginger

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Ginger, I know we have chatted before, but there is a Mayo trained and used to be a regular Mayo doctor just two hours from your new home. It is worth the drive to get great care.

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@auntieoakley

Ginger, I know we have chatted before, but there is a Mayo trained and used to be a regular Mayo doctor just two hours from your new home. It is worth the drive to get great care.

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@auntioakley Yes, I wrote his name down and will be contacting him tomorrow or Monday, to see if he will take me on as a patient. My current h-o was surprised but pleased I had already been thinking ahead. Now to get a nephrologist and internist who will work with Dr. Yasenchek.
Ginger

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