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.

Hello Ozys,

I take velcade weekly at the hospital . Injection/shot in the hip alternating sides each week. First I do labs. If labs are good, then velcade. Then once a month I do major labs consisting of 4-5 tubes of blood. Whose counting. + a 24 hour urine. The monthly labs include lambda and kappa #’s. Others I know do Velcade every other week.

I have been doing this for 1 1/2 years.

Ellen

REPLY

Thanks a lot mamaellen, I live in an area that has a lot of snow in winter and I am worried about driving if we have to go like every other day,
but once a week would be fairly easy to work out with caregivers and the weather. Sounds like you are doing well, and you probably will be
going into remission pretty soon. Hubby has been in once and very close the second time which is this time which is now going on for three
years. He has not failed rev/dex yet so am looking at the next drug for him, which VA says he will have to go for a while until they approve
pomalidimide So there is always something to think about and how to go about the next move.
Take care and hang in there,
Always love to hear good news from mm survivors,
Ozys

REPLY

Hello Ozys,

Glad to learn you are a planner. It is always better to be ahead of the game. Good for you. A year before I was identified with mm I was identified with breast cancer, I was a total basket case and did not begin any research till I was in radiation.. When I was told I had mm, I did get a bit upset, just a little
B I T (ha). I began immediately reading, learning the language/terms, contacting Mayo, Dana Farber and MD Anderson with questions and finding a support group. Within 3 weeks I was making demands to begin treatment and requesting tests on top of what the doc was ordering. I could not let what happened to me with the breast happen with mm.

For the past 11 months, I have been a hair’s breath from remission. But even when that happens, I haVE DECIDED to continue with chemo.

It is wonderful your husband has you.

Ellen

REPLY
@user_ch3a1e07f

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

Jump to this post

Indeed there is. Marcia Larson, RDN, is the nutritionist in the cancer center at the Phoenix campus of Mayo Clinic. You can book an appointment directly or ask your doctor or PA/NP to order a consult with her.

REPLY
@user_ch3a1e07f

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

Jump to this post

Hi Colleen:
Who is the nutritionist at Mayo, Rochester and is there a way that person could help with my husbands’ need for more protein
in his diet? Right now with winter coming, our time frame for getting over to Rochester from here is something that will have to
wait until Spring, which is usually when we take the trip.
Thanks for your help.
Ozys

REPLY

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.

REPLY

Welcome @1nan. Thank you for sharing your story here. Are the spinal and nerve issue related to MM or a separate issue? I can imagine that this complicates travel. Have you used Mayo Clinic concierge travel services when traveling to Rochester? http://mayocl.in/21nM5T6

REPLY
@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

Hello 1nan, I too have MM. I was diagnosed with MGUS in 2007 and also did the wait and watch thing until 07/2013 when I
needed to start treatment. You’re fortunate to be doing so well with Velcade, dex and Rev. I didn’t do well with Velcade or Rev.
I then went to Kyprolis and now I’m on Daratumumab, dex and Pomalyst. It’s going well so I’m grateful. I too, have found great
hope and peace in my relationship with God. I can’t imagine going through this without Him.
Thanks for sharing and I wish you the best!
Linda

REPLY
@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

Thank you, Linda. Keeping the “wait and watch” on the back burner of my mind all those years allowed me to live life and ignore whatever the future held in store. Nothing is worth the worry that would have kept me from living a wonderful life. Good wishes for continued treatment success.
Nancy

REPLY

Partially related, but as with the myeloma, I do what is necessary and live life. Minimal pain management keeps things controlled enough to live and enjoy. In May I was given the ultimate list of “don’ts” so I made my list of “can do” and move forward. Even though I had to give up going to the fitness center, I found many strengthening things that don’t compromise faster deterioration and even two knee replacements in spring and summer of 2014 didn’t get in my way. No, never used any travel services. I can be very creative when I put my mind to a problem, and suddenly the problem really isn’t.

REPLY
@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

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
@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
@user_ch3a1e07f

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

Jump to this post

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
@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

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
@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
Please login or register to post a reply.