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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jimbond48 | @jimbond48 | Oct 1, 2021
In reply to @gingerw "@chickey Welcome to Mayo Clinic Connect. I was formally diagnosed with multiple myeloma earlier this year,..." + (show)
@gingerw

@chickey Welcome to Mayo Clinic Connect. I was formally diagnosed with multiple myeloma earlier this year, and am under a wait-and-watch plan, although we may be starting treatment come March 2021.

Here is the link to an article from Mayo Clinic, on multiple myeloma, that will give you some great information: https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/symptoms-causes/syc-20353378
Also, the International Myeloma Foundation has a lot of information, and has a packet of material they will send out to you: myeloma.org

Is your wife's first treatment modality stem cell transplant, or another type [chemo or targeted radiation]? You can check with your local cancer clinic, and get the names of the care team, that will include a patient advocate and social worker. Let them assist you with questions and concerns you and your wife have. It is a great you are there for her! When you said her protein was off the chart, what protein was that? Have there been any other diagnostic procedures done?
Ginger

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I was diagnosed with stage 3 myeloma and had high paraprotein and much bone involvement. That was over 29 years ago. Mayo sesond opinions were key, as described in my book, The Man in the Arena:Surviving Multiple Myeloma since 1992. Profit goes to charity.

REPLY
sylvia67 | @sylvia67 | Sep 30, 2021
In reply to @ozys "I am a caregiver to my husband who was diagnosed with Multiple Myeloma 10 years ago...." + (show)
@ozys

I am a caregiver to my husband who was diagnosed with Multiple Myeloma 10 years ago. We made the trip to Mayo Clinic in Rochester, Minn.
and got expert advice on how to proceed. He started on Revlimid in March of 08, 11 months later he went into remission for four years and again, in
2013 we went on Revlimid again and his numbers have stayed almost normal for three years. With so many new drugs coming on line, there will be
other drugs available when he needs them. Yes, it is possible to live with this disease and do fairly well. It is a long haul and if he needs an update
in medication, we will make another trip to Rochester and go on from there for a long time. Always get a second opinion if you have this malady.

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Blessings on your husbands remission!How old was your husband when he was diagnosed? Did he have bone/kidney issues?

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Mentor
Ginger, Volunteer Mentor | @gingerw | Dec 28, 2020
In reply to @chickey "Diagnosed in October of this year. Went in for her yearly fiscal. Blood work showed her..." + (show)
@chickey

Diagnosed in October of this year. Went in for her yearly fiscal. Blood work showed her protein off the chart and was immediately referred to a local oncology clinic . Start treatment. Next step is a stem cell transplant. So much information overload.

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@chickey Welcome to Mayo Clinic Connect. I was formally diagnosed with multiple myeloma earlier this year, and am under a wait-and-watch plan, although we may be starting treatment come March 2021.

Here is the link to an article from Mayo Clinic, on multiple myeloma, that will give you some great information: https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/symptoms-causes/syc-20353378
Also, the International Myeloma Foundation has a lot of information, and has a packet of material they will send out to you: myeloma.org

Is your wife's first treatment modality stem cell transplant, or another type [chemo or targeted radiation]? You can check with your local cancer clinic, and get the names of the care team, that will include a patient advocate and social worker. Let them assist you with questions and concerns you and your wife have. It is a great you are there for her! When you said her protein was off the chart, what protein was that? Have there been any other diagnostic procedures done?
Ginger

REPLY
1 reply
chickey | @chickey | Dec 27, 2020
In reply to @amandaa "Hi @chickey and welcome to Mayo Clinic Connect. I am so sorry to hear about your..." + (show)
@amandaa

Hi @chickey and welcome to Mayo Clinic Connect. I am so sorry to hear about your wife's new diagnosis of multiple myeloma. As you will see, I moved your statement about her diagnosis to a discussion that was already started about being diagnosed with Multiple Myeloma. I did this so that you can connect with other members that are going through similar situations as your wife.

You can hit the reply button in your email notification or follow this link to get to the discussion https://connect.mayoclinic.org/discussion/multiple-myeloma-26f521/

I'd like to invite back @gingerw, @lkzvlk, and @kandc317 to the conversation.

@chickey, can you tell us a little more about your wife's situation? Where was she diagnosed and what were the key indicators?

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Diagnosed in October of this year. Went in for her yearly fiscal. Blood work showed her protein off the chart and was immediately referred to a local oncology clinic . Start treatment. Next step is a stem cell transplant. So much information overload.

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1 reply
Amanda Burnett | @amandaa | Dec 27, 2020

Hi @chickey and welcome to Mayo Clinic Connect. I am so sorry to hear about your wife's new diagnosis of multiple myeloma. As you will see, I moved your statement about her diagnosis to a discussion that was already started about being diagnosed with Multiple Myeloma. I did this so that you can connect with other members that are going through similar situations as your wife.

You can hit the reply button in your email notification or follow this link to get to the discussion https://connect.mayoclinic.org/discussion/multiple-myeloma-26f521/

I'd like to invite back @gingerw, @lkzvlk, and @kandc317 to the conversation.

@chickey, can you tell us a little more about your wife's situation? Where was she diagnosed and what were the key indicators?

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Jun 28, 2020
In reply to @lkzvlk "It is though the multiple myeloma association at Mayo clinic Rochester Mn and four other hospitals...." + (show)
@lkzvlk

It is though the multiple myeloma association at Mayo clinic Rochester Mn and four other hospitals. To get on it (if they have openings). Cancer will come around 2 years after the smouldering starts. Average is 5 years. Same drugs used for cancer treatment. 2 year study. Follow for 10 years. Of course the have other tests and qualification. They have some info on the mayo clinic site.

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@lkzvlk What a challenge for you, to be able to participate in this trial! I see that there are two currently through Mayo Clinic. I hope you will continue to be able to post here and let us know how you are doing. In November last year I was formally diagnosed with smoldering myeloma, although apparently a year earlier the oncologist in my old town knew of the issues but failed to inform me.
Ginger

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lkzvlk | @lkzvlk | Jun 26, 2020
In reply to @johnbishop "Hi @lkzvlk, Welcome to Connect. Thank you for sharing what helps you with protein intake when..." + (show)
@johnbishop

Hi @lkzvlk, Welcome to Connect. Thank you for sharing what helps you with protein intake when your appetite is not the best. Are you able to share what clinical study you are in for smoldering multiple myeloma?

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It is though the multiple myeloma association at Mayo clinic Rochester Mn and four other hospitals. To get on it (if they have openings). Cancer will come around 2 years after the smouldering starts. Average is 5 years. Same drugs used for cancer treatment. 2 year study. Follow for 10 years. Of course the have other tests and qualification. They have some info on the mayo clinic site.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jun 26, 2020
In reply to @lkzvlk "I am new here but I am going though clinical study for smoldering multiple myeloma. For...." + (show)
@lkzvlk

I am new here but I am going though clinical study for smoldering multiple myeloma. For. protein I take ensure plus. There are plant based shakes I try different ones. I do try to eat regular food but these help when my appetite is not the best.

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Hi @lkzvlk, Welcome to Connect. Thank you for sharing what helps you with protein intake when your appetite is not the best. Are you able to share what clinical study you are in for smoldering multiple myeloma?

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1 reply
lkzvlk | @lkzvlk | Jun 26, 2020
In reply to @ozys "Hi everyone on diet: My husband has such an aversion to food, I am lucky to..." + (show)
@ozys

Hi everyone on diet:
My husband has such an aversion to food, I am lucky to get him to eat at all. So since he really needs the protein and the doc’s do not
want him to lose weight, our solution is a steak once a week, if I am lucky. He doesn’t like a lot of the things that he used to eat. When the veggies are in for the summer, that is an option. We live in Northern Michigan and do not have the fresh gardens here, all is shipped in and not always that good. Melons are about the only thing he will eat now, so use pineapple, and (mandarins) This is a
challenge for all those on chemotherapy and dexamethosone. which really screws up the taste buds, plus my husband had a lifetime
of radiation therapy for the sinus cancer which they thought existed without a biopsy in 07. The radiation was done at a local hospital
and God Bless Mayo who we finally got to see and they corrected all the bad stuff but we’re left with the very limited appetite. Such is
the life of a cancer patient who happens to get the wrong prescription.
So glad everything is working for you and losing weight is always a good thing, I just did it since I knew the caring was going to get
more intense as time goes by, only veggies, chicken and chocolate for me and I have lost 30lbs and feel great, so can relate to the
healthy eating thing.
Ozys

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I am new here but I am going though clinical study for smoldering multiple myeloma. For. protein I take ensure plus. There are plant based shakes I try different ones. I do try to eat regular food but these help when my appetite is not the best.

REPLY
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