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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ozys | @ozys | Oct 8, 2016
In reply to @1nan "This is my first post, and see that I can identify with a number of you..." + (show)
@1nan

This is my first post, and see that I can identify with a number of you who are both caretaker and patient. I was diagnosed with MM 12 years ago at Mayo Clinic, after being followed by our local cancer treatment center for a year with MGUS. My local hematologist works with my Mayo doctor, and actually called Mayo as soon as my labs indicated a need for treatment this past spring before he called me. On Dex, Revlimid and Velcade with Valacyclovir twice a day since June, I am very close to remission already. Annual trips to Mayo and local frequent visits over the years have included MRIs, Skeletal Surveys, and labs every 3-4 months. In treatment, I have significant fatigue, partly in response to anemia. Appetite is non-existent, and eating is functional, and memory is giving us reason to laugh a lot. ("I want to tell you something." "What's that?" "I don't know.") If I get hungry for something, I had better have it fast, because in very short order I could be totally turned off by even the thought of it. And nothing tastes like "normal" to me, if it even has any taste at all. But I have never had one moment of fear or worry, have had no doubt that I will beat this, and know God has this in His hands. The 12 years "waiting" for a need for treatment gave me many opportunities for service through our church, and I have no doubt there are more opportunities waiting for easier days. We will somehow make it to Mayo in January (from PA) and trust safe travels. My spinal surgeries and current lumbar collapse/bulging disks, and crushed nerves seem to be a greater concern to us at this time. Monthly Zometa will hopefully get bone to the point that surgery will be possible this coming year. Meanwhile, Dex is a great help with managing pain levels, so all is good. I can only wish all of you could experience the peace my husband and I have had all this time.

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Hello1nan:
Your journey is like my husbands in the fact that he had a plasmacytoma first and then went into full blown MM. He has survived for
10 years with rev/dex off and on over the years. We just don't think about him having cancer and do the best we can to go on with
life. He has been in remission once and is near remission again, so each day he enjoys his time with family, Doesn't want to eat
and is very tired all the time, sleeps a lot but is in good humor except on dex day, then watch out!!! We don't do a lot of worrying
and go about our daily routine, even went out to eat with family last night. Don't do a lot of meds either. Only a pain med every day
to ease back pain and once that was regulated, now doing much better. Good luck and you will live another 12 years to do God's
work.
Ozys

REPLY
Nancy, Alumna Mentor | @1nan | Oct 8, 2016
In reply to @1nan "This is my first post, and see that I can identify with a number of you..." + (show)
@1nan

This is my first post, and see that I can identify with a number of you who are both caretaker and patient. I was diagnosed with MM 12 years ago at Mayo Clinic, after being followed by our local cancer treatment center for a year with MGUS. My local hematologist works with my Mayo doctor, and actually called Mayo as soon as my labs indicated a need for treatment this past spring before he called me. On Dex, Revlimid and Velcade with Valacyclovir twice a day since June, I am very close to remission already. Annual trips to Mayo and local frequent visits over the years have included MRIs, Skeletal Surveys, and labs every 3-4 months. In treatment, I have significant fatigue, partly in response to anemia. Appetite is non-existent, and eating is functional, and memory is giving us reason to laugh a lot. ("I want to tell you something." "What's that?" "I don't know.") If I get hungry for something, I had better have it fast, because in very short order I could be totally turned off by even the thought of it. And nothing tastes like "normal" to me, if it even has any taste at all. But I have never had one moment of fear or worry, have had no doubt that I will beat this, and know God has this in His hands. The 12 years "waiting" for a need for treatment gave me many opportunities for service through our church, and I have no doubt there are more opportunities waiting for easier days. We will somehow make it to Mayo in January (from PA) and trust safe travels. My spinal surgeries and current lumbar collapse/bulging disks, and crushed nerves seem to be a greater concern to us at this time. Monthly Zometa will hopefully get bone to the point that surgery will be possible this coming year. Meanwhile, Dex is a great help with managing pain levels, so all is good. I can only wish all of you could experience the peace my husband and I have had all this time.

Jump to this post

It sounds like your husband has had a rough road, but with you at his side, he is blessed. As for another 12 years, since I had my 75th birthday last summer, I'll consider that a good life! Believe me, life is good, and I appreciate all I receive. Thank you for recognizing what is so important to me. I have been given many gifts and skills and life experiences over the years, and it is wonderful to have opportunity to use it all.
Nancy

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 18, 2016
In reply to @user_ch3a1e07f "Thank you! Is there a nutritionist at Mayo 56St Phoenix?" + (show)
@user_ch3a1e07f

Thank you! Is there a nutritionist at Mayo 56St Phoenix?

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Hi @ozys
There are several cancer nutritionists at Mayo Clinic in Rochester. In Rochester, dietitians are referred for patients by their Mayo Clinic provider. You can speak with your oncologist to be referred to an “Oncology Dietitian”.

REPLY
don't give up | @mm_mm | Oct 18, 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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If I understand you right your MM is still in the smoldering stage. I was diagnosed 25 yrs ago and in the beginning I had smoldering MM.
My X-husband was in total denial and refused to believe that I had cancer. I certainly can feel with you and hope he will accept your disease.
Perhaps your hematologist can explain MM to him at your next examination.
During the smoldering stage I also came down with many life threatening infections, even meningitis. Once I started treatment infections became less and less. I was told that my immune system is not as strong as before coming down with MM but still works.
I make sure to constantly wash my hands and try to stay away from people with infections. It helps me.
MM certainly has become treatable. So chin up. Best wishes, IH

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 18, 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

Welcome to Connect, @mm_mm.
I'm confident @jan52241 will appreciate your experience from 25 years ago, which seems to match so closely to what she is going through right now. 25 years! Wow.

Certainly hand washing is the single most effective way we can protect ourselves from infection. mm_mm do you also get a flu shot?

REPLY
don't give up | @mm_mm | Oct 19, 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

Colleen, MM is cancer of the immune system. With an impaired immune system, inoculations, immunizations, flu shots do not always work. In my case my hematologist at Mayo stopped inoculations, immunizations and flu shots for me. MM patients are not allowed to get live vaccinations. The doctor will make the final decision which can differ from patient to patient.
IH

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 19, 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

Thank you for explaining.

REPLY
jan52241 | @jan52241 | 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?

Jump to this post

Your blog has helped me tremendously, I went for labs and a bone marrow biopsy yesterday and made my husband watch the biopsy! He came out with a different attitude after that. Tomorrow we meet with my oncologist, Dr. Tricot to go over all results, including the CT I had on my left and right humerus. I want him to give my husband (and me) a clear diagnosis of where I am at in this journey. My Dr. said it would be okay to get flu and pneumonia vaccinations, but I am waiting to see him before I do. This past months have not been going well. I had a respiratory infection, I keep getting cold sores on my lips and my spine and pelvis have been causing my a great deal of pain. Hopefully we can get things cleared up tomorrow. And, as much as I don't want to, I am going to ask for pain medication to have on hand for those really bad days. I have also starting logging in a journal how my days are going. I don't know about you, but every day is a surprise. Thanks for your input. It makes me feel a lot better. 🙂

REPLY
jan52241 | @jan52241 | Oct 20, 2016

When I hear don't worry, or stop worrying, it infuriates me . Don't tell me not to worry, tell me where I am at, what to watch for and explain explain explain the tests I am given. I sometimes feel deserted on a desert island. All of you bloggers are sending me life lines. Thank you.

REPLY
1 reply
don't give up | @mm_mm | Oct 20, 2016
In reply to @jan52241 "When I hear don't worry, or stop worrying, it infuriates me . Don't tell me not..." + (show)
@jan52241

When I hear don't worry, or stop worrying, it infuriates me . Don't tell me not to worry, tell me where I am at, what to watch for and explain explain explain the tests I am given. I sometimes feel deserted on a desert island. All of you bloggers are sending me life lines. Thank you.

Jump to this post

I do not know who told you not to worry. Usually it is a person who does not have cancer. Believe me, it infuriates me too to hear comments, like "Don't think about MM, enjoy life" etc. However i do believe in feeling positive, to laugh at least once a day to surround myself with people that understand.

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