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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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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 20, 2016
In reply to @jan52241 "Right now, I'm doing 3 month blood panels. I have to go and have a ct..." + (show)
@jan52241

Right now, I'm doing 3 month blood panels. I have to go and have a ct scan of my humerus and have another bone marrow aspiration. The biggest issue I am having right now is trying to help my husband understand that myeloma is a cancer and even though I still feel pretty normal and don't show and outward signs of illness he still doesn't get it. I recently had a severe respiratory infection and ended up in the ER. The doctor that treated me was smart. Blood was taken but my white count was in the normal range. She looked at my records and saw smoldering myeloma and treated me with a strong course of antibiotics. My question is, if I do have an infection, are my white blood cells going to rise to attack the infection?

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Good for you Jan. It sounds like you are taking the proverbial bull by the horns. Might I also suggest that at your appointment tomorrow that you ask questions until the doctor's explanation is clear to you (and your husband). I like using the "talk it back" method where I repeat the doctor's words back to him or her, in my own words. First this helps recognize any possible mis-interpretation of the doctor's words, secondly it possibly gives the doctor some plain language versions of his/her explanations to use with other patients (doctors learn too, right?), and thirdly, by repeating it back it helps you retain the information better - at least it has that effect for me.

Please let us know how your appointment goes tomorrow and what you learn.

REPLY
don't give up | @mm_mm | Oct 20, 2016
In reply to @jan52241 "Right now, I'm doing 3 month blood panels. I have to go and have a ct..." + (show)
@jan52241

Right now, I'm doing 3 month blood panels. I have to go and have a ct scan of my humerus and have another bone marrow aspiration. The biggest issue I am having right now is trying to help my husband understand that myeloma is a cancer and even though I still feel pretty normal and don't show and outward signs of illness he still doesn't get it. I recently had a severe respiratory infection and ended up in the ER. The doctor that treated me was smart. Blood was taken but my white count was in the normal range. She looked at my records and saw smoldering myeloma and treated me with a strong course of antibiotics. My question is, if I do have an infection, are my white blood cells going to rise to attack the infection?

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Glad to hear your husband in on your side! As to flu shots and vaccinations, I am sure your doctor made the right decision for you. Over the many years I learnt trusting the decision of your doctor is of utmost importance. I am also keeping a journal and write down my questions so that I do not forget to ask them. Even after 25 yrs every day is a surprise. By the way I live 5 walking distance from Mayo.
Would love to meet you and your husband. If you feel like it, let me know.
Take care, IH

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Nancy, Alumna Mentor | @1nan | Oct 20, 2016

I haven't heard or read about age and MM, but I have observed that it may be easier to accept and deal with the older we are. For example, I know there are no children or others totally dependent on me, I have been blessed with much time with grandchildren and now great grandchildren, and my husband and I have learned to roll with many of life's challenges knowing that we will be okay on the other side. If I were younger, with a young family, I believe acceptance would be much more difficult. I already know how to deal with many of the challenges coming with this, and even pain doesn't throw me curves because I know how to deal with my own. Like it all? Of course not! But understanding what to expect from myself is major. And there are always lessons to learn along the way - if I am honest with myself about how I feel and what is best for the moment. Only had to land in the back of an ambulance from dehydration once to know that will never happen again! (No, wasn't scared, just figured out real fast what happened and how smart I wasn't. Just when I thought I knew it all. :0)

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jan52241 | @jan52241 | Oct 21, 2016

I had a bone marrow biopsy two days ago. Haven't seen results yet. Had a ct of left and right humerus and I see it mentions osteopenia. I see the Oncologist today and I have many, many questions for him. My husband is coming with me this time. He needs to hear what I hear.

REPLY
jan52241 | @jan52241 | Oct 21, 2016
In reply to @jan52241 "Right now, I'm doing 3 month blood panels. I have to go and have a ct..." + (show)
@jan52241

Right now, I'm doing 3 month blood panels. I have to go and have a ct scan of my humerus and have another bone marrow aspiration. The biggest issue I am having right now is trying to help my husband understand that myeloma is a cancer and even though I still feel pretty normal and don't show and outward signs of illness he still doesn't get it. I recently had a severe respiratory infection and ended up in the ER. The doctor that treated me was smart. Blood was taken but my white count was in the normal range. She looked at my records and saw smoldering myeloma and treated me with a strong course of antibiotics. My question is, if I do have an infection, are my white blood cells going to rise to attack the infection?

Jump to this post

It is a huge comfort and spirit boost to hear all of your stories. Emotionally, it has given me the guts to ask what I need to and put people in their place when they make me feel like a hypochondriac. Doctors appt. today. Let you all know what happens. Thank you for your support my new friends!

REPLY
ozys | @ozys | Nov 6, 2016
In reply to @jan52241 "Right now, I'm doing 3 month blood panels. I have to go and have a ct..." + (show)
@jan52241

Right now, I'm doing 3 month blood panels. I have to go and have a ct scan of my humerus and have another bone marrow aspiration. The biggest issue I am having right now is trying to help my husband understand that myeloma is a cancer and even though I still feel pretty normal and don't show and outward signs of illness he still doesn't get it. I recently had a severe respiratory infection and ended up in the ER. The doctor that treated me was smart. Blood was taken but my white count was in the normal range. She looked at my records and saw smoldering myeloma and treated me with a strong course of antibiotics. My question is, if I do have an infection, are my white blood cells going to rise to attack the infection?

Jump to this post

Hi there jan52241: just wondering how you are doing and if you got any answers of late. Have been there with my husband and
know how waiting for answers can play on one? Take care and know you are being thought of. Take care, ozys

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 6, 2017

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?

REPLY
3 replies
ozys | @ozys | Jan 6, 2017

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

REPLY
1 reply
Nancy, Alumna Mentor | @1nan | Jan 6, 2017
In reply to @colleenyoung "Hi Nancy, Linda, Ozys, Ellen, IH I thought I would start the New Year by checking..." + (show)
@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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We are on our way today, about 1,000 mile trip. Will have Chemo side effects behind me Monday when I have labs, and an MRI for Spine Center consult Tuesday. Hematology appt Tue afternoon. Thank you for remembering!

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 6, 2017
In reply to @colleenyoung "Hi Nancy, Linda, Ozys, Ellen, IH I thought I would start the New Year by checking..." + (show)
@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?

Jump to this post

Best of luck Nancy. Do keep us posted.

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