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.

@lorrainechavez

I am currently being worked up for multiple myeloma. Makes a lot of sense given my history, symptoms, and signs. Please advise me of the most important things to remember going forward. I feel so very confused. Something is very wrong with my health and it is not just a relapse of disabling psoriatic arthritis i’ve been treating with biologics for the last 15 years years continiously, up until last Oct, 2016, when my rheumatologist said “no more biologics until you are rediagnosed due to increased chronic infections over the previous 1-2 years”. 40 ccs of “abnormal” fluid was drained from my knee a month ago, i was given the go ahead to resume a biologic, but more and more tests have been ordered. And i keep getting sick. Over six months without the immune suppressing biologic and i still got one “flu” right after the next. Strange episodes of extreme pain all over fatigue, fever, throwing up, disorientation. And extreme, persistent pain in my right elbow, right in the bone! Mouth sores. Chronic insomnia. I have over 7 specialists and no clue what is really wrong with me! Constant aches and pains everywhere, pain, and more pain!

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Thank you for the information. Do you go to Mayo? I've been to two doctors there but no one has suggested the anti fungal, anti bacterial or the Fossamax. 
They sound like they would be very helpful. 

Linda

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@lorrainechavez

I am currently being worked up for multiple myeloma. Makes a lot of sense given my history, symptoms, and signs. Please advise me of the most important things to remember going forward. I feel so very confused. Something is very wrong with my health and it is not just a relapse of disabling psoriatic arthritis i’ve been treating with biologics for the last 15 years years continiously, up until last Oct, 2016, when my rheumatologist said “no more biologics until you are rediagnosed due to increased chronic infections over the previous 1-2 years”. 40 ccs of “abnormal” fluid was drained from my knee a month ago, i was given the go ahead to resume a biologic, but more and more tests have been ordered. And i keep getting sick. Over six months without the immune suppressing biologic and i still got one “flu” right after the next. Strange episodes of extreme pain all over fatigue, fever, throwing up, disorientation. And extreme, persistent pain in my right elbow, right in the bone! Mouth sores. Chronic insomnia. I have over 7 specialists and no clue what is really wrong with me! Constant aches and pains everywhere, pain, and more pain!

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Hello,

No. I did not go to Mayo. I’m in the Chicago area. I was identified at Rush. My treatment began at Northwestern. I am now at Lutheran General.

The 3 you responded about were begun simultaneously (spelling?) with the actual treatment along with a script for anti nausea med. Thankfully that one has never been needed.

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@lorrainechavez

I am currently being worked up for multiple myeloma. Makes a lot of sense given my history, symptoms, and signs. Please advise me of the most important things to remember going forward. I feel so very confused. Something is very wrong with my health and it is not just a relapse of disabling psoriatic arthritis i’ve been treating with biologics for the last 15 years years continiously, up until last Oct, 2016, when my rheumatologist said “no more biologics until you are rediagnosed due to increased chronic infections over the previous 1-2 years”. 40 ccs of “abnormal” fluid was drained from my knee a month ago, i was given the go ahead to resume a biologic, but more and more tests have been ordered. And i keep getting sick. Over six months without the immune suppressing biologic and i still got one “flu” right after the next. Strange episodes of extreme pain all over fatigue, fever, throwing up, disorientation. And extreme, persistent pain in my right elbow, right in the bone! Mouth sores. Chronic insomnia. I have over 7 specialists and no clue what is really wrong with me! Constant aches and pains everywhere, pain, and more pain!

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Thank you so much! I will do that.

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Hey Guys,
I am new to this site and actually just got diagnosed with MM. I have my bone marrow biopsy scheduled for next Tuesday the 18th and result consultation on the 24th. Mt wife has been my rock and I have so manyfriends and family praying for me and supporting me. Truthfully the love has been overwhelming. I really don’t know what to expect going forward and sometimes am in denial to a degree I think. I have been experiencing alot of lightheadedness and dizziness at times which for now has me unable to work. They have me doing vestibular therapy to try and help with it. I really appreciate all of you for sharing the trials and trubulations of this illness. I’m getting lots of useful tips and information on the road that lies ahead and for that i am eternally grateful. So far my mediacal team is on point but it is early on. I live in the Chicago area and the Hospital where I work and get my treament is affiliated with the Mayo Clinic. May God bles you all today and always.

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Hello,

The first Wednesday of each month there is a support group for MM meets at the CANCER WELLNESS CENTER in Northbrook , Ill. 7:00p.m.

Please come. Ellen

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@juiusd

Hey Guys,
I am new to this site and actually just got diagnosed with MM. I have my bone marrow biopsy scheduled for next Tuesday the 18th and result consultation on the 24th. Mt wife has been my rock and I have so manyfriends and family praying for me and supporting me. Truthfully the love has been overwhelming. I really don’t know what to expect going forward and sometimes am in denial to a degree I think. I have been experiencing alot of lightheadedness and dizziness at times which for now has me unable to work. They have me doing vestibular therapy to try and help with it. I really appreciate all of you for sharing the trials and trubulations of this illness. I’m getting lots of useful tips and information on the road that lies ahead and for that i am eternally grateful. So far my mediacal team is on point but it is early on. I live in the Chicago area and the Hospital where I work and get my treament is affiliated with the Mayo Clinic. May God bles you all today and always.

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Good wishes moving forward. You have much reason for hope.Nancy from PA

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@juiusd

Hey Guys,
I am new to this site and actually just got diagnosed with MM. I have my bone marrow biopsy scheduled for next Tuesday the 18th and result consultation on the 24th. Mt wife has been my rock and I have so manyfriends and family praying for me and supporting me. Truthfully the love has been overwhelming. I really don’t know what to expect going forward and sometimes am in denial to a degree I think. I have been experiencing alot of lightheadedness and dizziness at times which for now has me unable to work. They have me doing vestibular therapy to try and help with it. I really appreciate all of you for sharing the trials and trubulations of this illness. I’m getting lots of useful tips and information on the road that lies ahead and for that i am eternally grateful. So far my mediacal team is on point but it is early on. I live in the Chicago area and the Hospital where I work and get my treament is affiliated with the Mayo Clinic. May God bles you all today and always.

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Hello @juiusd, and welcome to Connect. Thank you for sharing your recent diagnosis with the group. You mentioned that your biopsy was today, how did that procedure go for you?

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@juiusd

Hey Guys,
I am new to this site and actually just got diagnosed with MM. I have my bone marrow biopsy scheduled for next Tuesday the 18th and result consultation on the 24th. Mt wife has been my rock and I have so manyfriends and family praying for me and supporting me. Truthfully the love has been overwhelming. I really don’t know what to expect going forward and sometimes am in denial to a degree I think. I have been experiencing alot of lightheadedness and dizziness at times which for now has me unable to work. They have me doing vestibular therapy to try and help with it. I really appreciate all of you for sharing the trials and trubulations of this illness. I’m getting lots of useful tips and information on the road that lies ahead and for that i am eternally grateful. So far my mediacal team is on point but it is early on. I live in the Chicago area and the Hospital where I work and get my treament is affiliated with the Mayo Clinic. May God bles you all today and always.

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Hello @juiusd,

You mentioned that you had a bone marrow biopsy scheduled for 7/18 and your consult was set for 7/24. I am just checking in and wondering if you feel comfortable sharing with the group how your consultation went and what you learned?

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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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@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.

Liked by lisal64

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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.

Liked by robinraig

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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.

Liked by robinraig

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