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.

@robinraig

My 67 year old brother was recently diagnosed with full blown mm. He is getting the results of his bone biopsy today. He feels fine and has no physical symptoms.

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His initial doctor wants him to start chemotherapy immediately. He is currently looking for a specialist in the Spokane area but may have to go to Seattle.

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@robinraig

His initial doctor wants him to start chemotherapy immediately. He is currently looking for a specialist in the Spokane area but may have to go to Seattle.

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I was diagnosed with Stage 3 Multiple Myeloma in December 2017. Mine is one of the most aggressive forms of MM. I was in Renal Failure and did Dialysis three times a week for all of January. Luckily my kidneys are now functioning on their own and no longer need Dialysis. I’m being treated at Aurora (Chemo) and switching over to Froedtert (possible Vertebraoplasty) in Milwaukee, WI. I had a couple of vertebrae fractures in the upper Thorasic area, back in December that have healed some and now have about fractures in the lower Lumbar area, L2,L3, and L5. I was not told of Kyphoplasty or Vertebroplasty options until they also started to heal. Radiation was not a good option because it makes the bones even weaker. In January I was put on a VCD Chemo regiment of; Velcade and Cytoxan three times a week, and Dexamethasone once a week. A genetic test was done in March in preparation for an Autologous Stem Cell Transplant (ASCT) and I found out that I have several gene deletions. The Chemo regiment appeared to stop working and I still had 30-40% of cancer in my bone marrow. The ASCT is also on hold to see if a new KRD Chemo regiment of; Kyprolis, Revlimid twice a week, and Dexamethasone, once a week, will get the cancer below the 30% range. I went without Chemo for three weeks between Chemo regiments, and shouldn’t have, and took a drastic decline. I went through a lot of emotional turmoil adjusting to the first week of Revlimid. Now I’m doing much better. Hopefully with another month and a half I’ll be able to have the ASCT which could give me a couple more years to live.

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@larsmayo

I was diagnosed with Stage 3 Multiple Myeloma in December 2017. Mine is one of the most aggressive forms of MM. I was in Renal Failure and did Dialysis three times a week for all of January. Luckily my kidneys are now functioning on their own and no longer need Dialysis. I’m being treated at Aurora (Chemo) and switching over to Froedtert (possible Vertebraoplasty) in Milwaukee, WI. I had a couple of vertebrae fractures in the upper Thorasic area, back in December that have healed some and now have about fractures in the lower Lumbar area, L2,L3, and L5. I was not told of Kyphoplasty or Vertebroplasty options until they also started to heal. Radiation was not a good option because it makes the bones even weaker. In January I was put on a VCD Chemo regiment of; Velcade and Cytoxan three times a week, and Dexamethasone once a week. A genetic test was done in March in preparation for an Autologous Stem Cell Transplant (ASCT) and I found out that I have several gene deletions. The Chemo regiment appeared to stop working and I still had 30-40% of cancer in my bone marrow. The ASCT is also on hold to see if a new KRD Chemo regiment of; Kyprolis, Revlimid twice a week, and Dexamethasone, once a week, will get the cancer below the 30% range. I went without Chemo for three weeks between Chemo regiments, and shouldn’t have, and took a drastic decline. I went through a lot of emotional turmoil adjusting to the first week of Revlimid. Now I’m doing much better. Hopefully with another month and a half I’ll be able to have the ASCT which could give me a couple more years to live.

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Hi again Robinraig, I’m actually taking The Revlimid for 21 days and a week off. What I was going to say was that Specialists seem to be more on top of options. And I would definitely recommend starting Chemo right away.

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@larsmayo

Hi again Robinraig, I’m actually taking The Revlimid for 21 days and a week off. What I was going to say was that Specialists seem to be more on top of options. And I would definitely recommend starting Chemo right away.

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Thanks so much for giving me an idea of what’s ahead. When I spoke with him last week, the chemo was going going to start soon. It’s a bit overwhelming as I’m sure you know. They are still pursuing a specialist. I do not know what the bone marrow numbers are just that they are going ahead. He had an MRI some years ago for something else. It showed 3 spots on his spine that they think are from mm. The red flag was a kidney stone that was removed recently. They followed up with a blood test and then the bone marrow biopsy. All that has been going on over the last few weeks.
I hope all continues well with you and the stem cell treatment happens. My brother was told that will be in his future.

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I am new to this mm thread but joined Connect this year because of my hearing loss. It was a bonus to find this after I got the sudden news from my brother that he has full blown mm. Total surprise to him.

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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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@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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In reply to @mehz4802 "Thank you." + (show)
@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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