1. < Blood Cancers & Disorders

Multiple Myeloma: Come introduce yourself and let's talk

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.

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Nancy, Alumna Mentor | @1nan | Jun 4, 2017
In reply to @lorrainechavez "I am currently being worked up for multiple myeloma. Makes a lot of sense given my..." + (show)
@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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I was diagnosed with MM in 2004 yet didn't start treatment until June 2016. I was diagnosed at Mayo and followed there as well as with my local hematologist/oncologist. If you think I might be of some help, please feel free to reach out to me. Your path has been more difficult than has been mine. I an in PA.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 4, 2017
In reply to @lorrainechavez "I am currently being worked up for multiple myeloma. Makes a lot of sense given my..." + (show)
@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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@ozys Thanks for your encouraging post to @lorrainechavez. I am happy to hear that your husband found some relief from his symptoms as a result of his trip to Mayo.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 4, 2017
In reply to @lorrainechavez "I am currently being worked up for multiple myeloma. Makes a lot of sense given my..." + (show)
@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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@lorrainechavez Thanks for sharing your story with us. I am sorry to hear of these difficult symptoms that you have experienced. I hope that you will get some resolution and treatment soon. If you are comfortable sharing more information, please let us know what the next step will be in your treatment and/or diagnosis. Teresa

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mamaellie | @mamaellie | Jun 4, 2017
In reply to @lorrainechavez "I am currently being worked up for multiple myeloma. Makes a lot of sense given my..." + (show)
@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 Lorraine,

I also have multiple Myeloma (MM). Was identified 2 years ago. MM was my 2nd cancer. I vowed I'd be as informed as I possibly could before treatment began. For 2 weeks I Googled, learned foreign vocab, practiced saying these foreign medical words, learned about treatments , side effects, first course of meds and was even able to attend a support group for more insight.

The identifying test I had was blood work for Lambda and Kappas and then a full skeletal x ray. All classic MM
I began a treatment of Velcade (shot in office) and dexamethasone ((dex) (taken orally/pill form) weekly. I responded well cutting my #'s in 1/2. Treatment was changed after 2 months to Velcade and dex weekly AND Revlimid (Rev ) (taken orally/pill form)) 3 out of 4 weeks. I am currently doing the same and doing well.

There are also other meds you're put on. One is a daily anti fungal, the other a daily anti bacterial, & weekly a bone strengthener FOSSOMAX. The first 2 protect you from any other illnesses that will interrupt treatment Fossomax, or its generic alendronate, is to keep the bones strong. I also take a calcium supplement. After 2 years my bone density is still normal & hasn't deviated from 4 years ago. These 3 drugs are to be prescribed when treatment begins.
Please note if your reaction to DEX is overwhelming it can be divided over 2 or even 3 days.

Initially, a doc tried to convince me into a bone marrow transplant prior to beginning meds. I refused.

One more thing. It's essential you consume only nutritionally dense foods & eliminate the rest. Whether its for MM or any other physical ailment, this will put your body at top fighting capacity, reduce inflammation & improve or stabilize your immune system.

Your test result should be back no later than weeks end.

You are the captain of your treatment and your doc is your co captain. When in doubt as to what your doc says, tell your doc you will go home to study and research what was proposed. Do so via google, phone calls to the Leukemia Society, the MM International foundation and through this forum.

Ellen

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 4, 2017
In reply to @lorrainechavez "I am currently being worked up for multiple myeloma. Makes a lot of sense given my..." + (show)
@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!

Jump to this post

@mamaellie Hi Ellen: Thanks for sharing your story with Mayo Connect. You provided a lot of information about meds and other treatments. You have also been very proactive in your treatment. I like that you describe your relationship with your doctor as captain and co-captain. Best wishes to you as you continue to navigate your treatment. Teresa

REPLY
user_ch3a1e07f | @user_ch3a1e07f | Jun 4, 2017
In reply to @lorrainechavez "I am currently being worked up for multiple myeloma. Makes a lot of sense given my..." + (show)
@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!

Jump to this post

Thank you for the information. Do you go to Mayo? I&apos;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

REPLY
mamaellie | @mamaellie | Jun 5, 2017
In reply to @lorrainechavez "I am currently being worked up for multiple myeloma. Makes a lot of sense given my..." + (show)
@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!

Jump to this post

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.

REPLY
lorrainechavez | @lorrainechavez | Jun 5, 2017
In reply to @lorrainechavez "I am currently being worked up for multiple myeloma. Makes a lot of sense given my..." + (show)
@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!

Jump to this post

Thank you so much! I will do that.

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JuliusD | @juiusd | Jul 14, 2017

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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3 replies
mamaellie | @mamaellie | Jul 14, 2017

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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