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.

@ozys

Hi There colleen:
Thanks for asking, my husband is now in his eleventh year of survival. All seems to progressing nicely for him, meds are doing the job and
the pain meds are in a stable situation for now. Since he has had multiple myeloma for eight years and plasmacitoma for two years before
that, I think we are doing quite well. He has a check up on Jan 19 and we will know more then. He does sleep a lot and there is a lose of
appetite, but just feed him what he wants and that works, he will be 86 next month so we have a lot to be thankful for this year. ozys

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So good to hear from you Ozys. I bet 11 years ago when he was first diagnosed you couldn’t have imagined that you would write the phrase “my husband is now in his eleventh year of survival” — indeed something to be thankful for.

@colleenyoung

Hi Nancy, Linda, Ozys, Ellen, IH
I thought I would start the New Year by checking in.

@1nan – are you still coming to Mayo Rochester this month?
@ozys – how is your husband doing?
@jan52241 – What were the results of the bone marrow biopsy? What treatment are you on?
@user_ch3a1e07f and @mm_MM what does the new year bring for you?

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Thank you, Colleen. I am returning pretty close to remission.

Hi @1nan, I hear you and @MM_MM met up while you were in Rochester. How was your trip to Rochester? Are you home now?

@colleenyoung

Hi @1nan, I hear you and @MM_MM met up while you were in Rochester. How was your trip to Rochester? Are you home now?

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Colleen, we arrived home yesterday, grateful for good news, promising protocol adjustments for moving forward, and hopeful from research based plans next appointment at Mayo, August 2017. The Spine Center Consult resulted in outpatient injections for pain management that will address future possible treatments. Yes, appreciated the outreach visit with @mm_mm, and look forward to conversation another time. There was everything positive in this visit, and we are always feeling blessed to have our care providers at Mayo Clinic available for every question or concern along this journey. Knowing every decision and plan is research based has given us the confidence to continue over the years since diagnosis in 2004.

@colleenyoung

Hi @1nan, I hear you and @MM_MM met up while you were in Rochester. How was your trip to Rochester? Are you home now?

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So good to hear Nan. Keep us posted.

@totopeg

I am a three year survivor of Multiple Myeloma. I receive injections of Velcade every 2 weeks, with 8 mg of Dexamethasone. Velcade is my second chemo drug. Good news is, there is always a new drug! Some ups and downs during this 3 year period. We were going to try a bone marrow transplant, but that did not go well for me. Right now my numbers look good, so I have a lot to be thankful for. I have wonderful doctors and family support which is key. If your doc is not listening to you, find one who will.

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As of three months ago, my doctor decided that I am i remission. No Velcade injections and Dex. I do get blood work done every month and see the doc every two months. Hope, progress and blessings!

@totopeg

I am a three year survivor of Multiple Myeloma. I receive injections of Velcade every 2 weeks, with 8 mg of Dexamethasone. Velcade is my second chemo drug. Good news is, there is always a new drug! Some ups and downs during this 3 year period. We were going to try a bone marrow transplant, but that did not go well for me. Right now my numbers look good, so I have a lot to be thankful for. I have wonderful doctors and family support which is key. If your doc is not listening to you, find one who will.

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@totopeg, this is wonderful news. Thank you for sharing. Can you get the blood work done close to home or do you have to go to the cancer center?

totopeg Just great news when one goes into remission and let’s hope the remission will last a loooong time. We certainly have had a long run
with MM, in our eleventh year now and doing quite well with partial remission for four years now and second round of revlimid for maintenance
for the past 4 years which is working very well. Good luck ozys

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!

0411161047d

@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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Hi Lorraine:
My husband is an 11 year survivor of plasmacytoma and full blown multiple myeloma. He was diagnosed by a test called “bone
marrow biopsy” at the Mayo Clinic in Rochester, Minn. I don’t where you live, but a trip to Mayo Clinic might give you the answers
you are looking to receive concerning your health. Hubby is on revlimid now in the relapse phase of the disease and is doing
fairly well considering he is now 86 years old. Sleeps a lot and is very tired all the time; but does enjoy a movie almost every
day. There are a lot of good medicines out there now that didn’t exist when we first started this journey. Good luck, Ozy

@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.
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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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@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.

Liked by lorrainechavez

@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

Liked by lorrainechavez

@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

@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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@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

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